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October 7, 2008

Scraps DeSelby’s in Intensive Care
Posted by Teresa at 11:12 AM * 672 comments

Yesterday Scraps (Soren) DeSelby had a hemorrhagic stroke, and is now in the Intensive Care Unit at New York Methodist Hospital in Park Slope in Brooklyn. (This story has been percolating along in the current open thread, starting here, if you want the as-it-happened version instead of my excerpts.) This morning’s news is guardedly hopeful: he’s not in a coma, he understands language, and the inoperable hematoma hasn’t gotten any bigger. Nothing is guaranteed, and he is not out of danger. Even given the best possible outcome, he’s going to be in there for some time to come.

So often at these moments one wants to help, but there’s nothing you can do. In this case, you might. Does anyone have a superseded iPod, or failing that a CD player or other musical device they won’t mind losing if someone swipes it from his room? For Scraps, music is second only to oxygen, and the only option in the NYM ICU is an obnoxious Top 40 station that plays lots of ads. If we can get that set up, he’ll be a lot happier, and people can send him mix tapes. (Okay, I know they aren’t tapes anymore.) To get a sense of his musical tastes, see his weblog, Parlando, especially the 99 Albums Project and the Song Project.

Velma is the primary contact person for most purposes, and Patrick and I are the secondary contacts, but if someone wants to help coordinate the music thing, that’d be, well, helpful.

One more thing. Nobody’s asked me to say this, but it’s not like I haven’t been in the same position. There’s no such thing as paid sick leave for freelance copyeditors. We should think about this.

Onward. Here’s how this started, at least from my POV:

#446 ::: Teresa Nielsen Hayden ::: (view all by) ::: October 06, 2008, 06:43 PM:

I regret to tell you that Scraps (Soren) DeSelby is having a hemorrhagic stroke right now. His partner Velma Bowen phoned me earlier this afternoon, saying that Scraps was having an odd tingling and loss of muscle control in one hand and one foot, and did I have Macdonald’s phone number?

Jim wasn’t at home, but I talked to Doyle, who declared that she was speaking with Jim’s voice, and that Scraps should go to the ER. Which was the right answer, of course. I felt stupid. I think I was flustered.

I phoned back and talked to Velma and then to Scraps. He wanted to stay home and rest, and see whether that didn’t make it go away. I told him firmly that there aren’t many fast-onset lateralized neuromuscular disorders that aren’t serious. So Scraps and Velma went to the Lutheran Medical Center, where they decided he was having a stroke, and sent him off to New York Methodist in Park Slope, where they have a stroke center. NYM got him CATscanned pronto, and found he had a hemorrhage on one side. Last we heard, they had a neurosurgeon coming in.

Velma said his blood pressure was 220 over 166. She also said his speech was now affected.

He is a beloved friend. We’ve known him since he was 17.

I feel stupid and useless and full of dread.

And don’t we all, at moments like that.
#453 ::: Teresa Nielsen Hayden ::: (view all by) ::: October 06, 2008, 07:59 PM:

Scraps is bleeding on the right basal ganglias. It’s too deep for surgery. They’re admitting him to Intensive Care. He’s forty-four.

It took half of forever for them to get him into Intensive Care. Velma was going to come over to our place after she got Scraps settled in, but she wound up going straight home.
#483 ::: Velma ::: (view all by) ::: October 07, 2008, 02:45 AM:

… I am home from the hospital, dehydrated and exhausted, and trying to remedy the former before I fall over. To clarify: Soren called me in mid-afternoon, and said, “I don’t want to alarm you, but I have numbness and trouble gripping with my right hand…”. He was going to tough it out, and I asked if I should come home immediately. When he said, “Thank you,” I hauled ass into the nearest cab.

Once I got home, we had something of a disagreement about going to the hospital (as he has no insurance/health coverage). That was when I called Teresa to get Jim’s number. We were going to take a cab to Lutheran Hospital, but Soren couldn’t walk down the stairs, and I couldn’t carry him. That’s when I called 911; the ambulance came within about ten minutes, and they had him in the hospital in another ten or less. He got a room in the ICU at 1am.

Prayers, good wishes, good vibes, what-have-you are all appreciated. And if there’s anything that might affect the universe positively in his direction, it would be one of his other great loves: music. So make music, or listen to music.

Today is the eighth anniversary of our first date, which happened, in part, because of Patrick and Teresa playing matchmaker.

This morning, when Velma and Patrick and I were there visiting Scraps, she said, “Dear, for our anniversary next year, let’s do something really boring.
#494 ::: elise ::: (view all by) ::: October 07, 2008, 10:50 AM:

OK. I just got a phone call from PNH, who is at the hospital. He says there are some encouraging things.

He said that the top priority right now is to bring Soren’s blood pressure down from the scary heights it was at. There is definite progress on this; yesterday it was at two-hundred-mumble over oh-god, and now it’s at one-hundred-something over well-that’s-better-than-yesterday-at-least. … Get the blood pressure down and this reduces the risk of further bleeds, and the risk of all sorts of other things. Get him stabilized at a safer level, and then everything else can be addressed.

“Everything else” includes stuff like finding out exactly what the damage is and then working to get back as much function as possible. As Velma and a number of other people said, he doesn’t have speech right now, though he’s made some words here and there, and PNH reports that Velma said he achieved a couple of phrases during the night. (“Oh, come on!” being the most memorable, apparently; last night Patrick said that Soren’s pissed off, which is kind of a good sign, you know?) Patrick says that though Soren’s not talking, he is answering questions with eloquent gestures. TNH asked him point-blank, “Do you have language?” and she got a strong affirmative nodding in reply. This is major goodness, because he’s in there processing, even if his speaker isn’t working at the moment, and he can communicate that he is processing. …

He slips in and out of sleep every few minutes. His left leg and arm are twitchy and irritable (he keeps trying to turn over on his side, which is how he always sleeps), but his right arm and leg don’t move. He can’t talk. He can’t stick out his tongue. But when I said “Scraps, do you have language?” he made it clear that he did. “Oh, thank god, you’re still in there,” I said, sitting down. “Let me see if I can remember everybody who sends their love…”

Updates as they occur. Watch this space.

Comments on Scraps DeSelby's in Intensive Care:
#1 ::: Xopher ::: (view all by) ::: October 07, 2008, 12:43 PM:

Bright Blessings for a swift and complete recovery. Scraps is in my prayers and thoughts.

#2 ::: Nancy C. Mittens ::: (view all by) ::: October 07, 2008, 12:44 PM:

I might have a spare CD player at home, will poke around tonight and see.

#3 ::: Fragano Ledgister ::: (view all by) ::: October 07, 2008, 12:45 PM:

My best wishes for his prompt and full recovery.

#4 ::: Marna Nightingale ::: (view all by) ::: October 07, 2008, 12:53 PM:

I have a 2G iPod shuffle I can easily spare. For hospital, it's ideal: small, brightly coloured, easy controls, can be clipped to a gown.

El means to call me today, so I can get an address to send it to. Somebody want to tell me what genres to load it with?

#5 ::: kouredios ::: (view all by) ::: October 07, 2008, 12:54 PM:

When the time comes, I can help with music gathering. I have a number of those albums on his list.

#6 ::: Marna Nightingale ::: (view all by) ::: October 07, 2008, 12:55 PM:

Read too fast. Off to look at the music.

#7 ::: Harriet Culver ::: (view all by) ::: October 07, 2008, 01:00 PM:

I never use my Discman any more -- what would be the quickest way to get it into play here? I spose I could drop it off somewhere in Chelsea or something?

#8 ::: Harriet Culver ::: (view all by) ::: October 07, 2008, 01:02 PM:

though an iPod does sound much more ideal for the situation...

#9 ::: Andrew Willett ::: (view all by) ::: October 07, 2008, 01:10 PM:

I have an old (2nd generation, 10-gig) iPod at home... somewhere. It was showing signs of old-age floobiness -- periodic out-of-nowhere reboots and such, hence the deprecation -- but it would probably still be vastly better than nothing if nobody has a shinier one. Will look for it at home this evening.

#10 ::: Luke McGuff ::: (view all by) ::: October 07, 2008, 01:12 PM:

Good luck to Soren and all concerned. This is surprisingly saddening to me.

I'll send some music his way.

#11 ::: abi ::: (view all by) ::: October 07, 2008, 01:13 PM:

My prayers and my heart goes out to everyone in the situation.

Scraps (assuming someone reads this to you), I've never sat down and told you how much I value you and admire you as a member of the community. This is mostly because the times I find myself most staggered by your wisdom and your charm are usually when I'm focusing on the bad behavior rather than the good. I look forward to your return to the community in whatever timescale you can manage.

Velma, be of what good heart you can. You are surrounded by friends on all sides, both virtually and physically. Remember to take care of yourself too, though.

Patrick and Teresa, this is a sucky time to be visiting people in the hospital, I know. It's a mitzvah that you're doing.

My love to everyone.

#12 ::: Tom Whitmore ::: (view all by) ::: October 07, 2008, 01:14 PM:

An iPod (or several) would probably be much better -- no need to change disks or have a large number of disks around. I'm on the wrong coast to get one there quickly. Hmm, though -- perhaps an e-address to which we might send music that someone nearer could then put onto iPods for him? And what would be the DRM complications of doing such a thing? Is there an exemption for "compassionate, non-commercial use"?

#13 ::: ethan ::: (view all by) ::: October 07, 2008, 01:20 PM:

Good christ. I've been incommunicado for a while and just heard about this. Get all better damn fast, Scraps.

I can make tapes, CDs, or mp3 playlists. Do we know a format yet? Where can I send them?

#14 ::: martyn ::: (view all by) ::: October 07, 2008, 01:21 PM:

That description of the symptoms made my memory go very cold, and then his bp . . . Prayers and good wishes to everyone concerned. Be strong.

#15 ::: Doc Hatter ::: (view all by) ::: October 07, 2008, 01:22 PM:

I've got a 4G Mini (one of the last; I got it right before they announced the Nano) that I don't use anymore, & would be happy to donate.

#16 ::: Lucy Huntzinger ::: (view all by) ::: October 07, 2008, 01:23 PM:

No insurance and no sick leave would crush me with fear the moment I had leisure to think if I were in that situation. I'd like to help set up something that will alleviate that; it would be good to work with others on it.

#17 ::: Gavin Edwards ::: (view all by) ::: October 07, 2008, 01:27 PM:

Also handy, I'm guessing, would be a cradle or iDock or something of that sort, both so Scraps can listen without requiring headphones, and so the iPod can charge up.

I have an old iPod that I'd be happy to send over, already loaded with music Scraps will enjoy (including copies of some of the many CDs he's burned for me over the years). Like Tom, I'm on the wrong coast, but I will head right over to Federal Express if Scraps isn't already buried with local iPods.

I'm totally in a state of denial about this news. My fervent wishes for quick healing to Scraps and my deepest sympathies to everyone here who loves him (especially Velma).

#18 ::: John Chu ::: (view all by) ::: October 07, 2008, 01:28 PM:

I also have an old 2G iPod at home somewhere. The last I checked, it was in perfect working condition. Well, I dropped it crossing the street from Port Authority once years ago. It's a bit dented now, but plays fine.

However, it dates from the bad old days when there were "Mac iPods" and "Windows iPods." It needs to be reformatted in order for a Windows box to write data on to it. (Instructions are on the web.) It is also firewire only. (This may be a bigger problem. Hopefully, I can find the cable that goes with it.)

I'll look for it when I get home from work. (Unfortunately, a guiding principle of my life seems to be any object I haven't seen for a while may be irretrievably lost. e.g., my copy of Margo Lanagan's Black Juice.)

If I can find it, and you still need it, I'll ask about how to get it to you.

#19 ::: Tom Barclay ::: (view all by) ::: October 07, 2008, 01:30 PM:

Good thoughts and best wishes for Scraps, Velma and friends and family.

Let us know where to send contributions.

#20 ::: meryl ::: (view all by) ::: October 07, 2008, 01:31 PM:

Well I'm sorry, but this just pisses me off. I mean, I send my warm fuzzies and best wishes and hopes and prayers along with everyone else, but it all makes me so damn mad.

Soren and Velma have been given far more than their fair share of medical horrors, and now this. I call foul.

Soren has been one of my most favored freelancers for many years (and Velma, his package schlepper supreme), so you can believe me when I say long is the litany of ailments that have been visited upon those two.

There is something seriously askew in the universe. Somewhere there lives a hideously awful couple enjoying a robust health they don't rightfully deserve.

Get better right quick, Soren. The world is more boring without your voice in it.

M

#21 ::: Tim Walters ::: (view all by) ::: October 07, 2008, 01:33 PM:

I have about half the albums on his (excellent) list in mp3 format, and would be happy to burn them to a CD-R and send them to whoever is loading the iPod.

#22 ::: Tania ::: (view all by) ::: October 07, 2008, 01:33 PM:

Scraps, I love your music blogging and enjoy your commentary here as well. Please heal completely and speedily.

#23 ::: Rozasharn ::: (view all by) ::: October 07, 2008, 01:35 PM:

Not that he knows me at all, but best wishes.

#24 ::: Michelle ::: (view all by) ::: October 07, 2008, 01:39 PM:

I want to send my best wishes and hopes.

Send.

#25 ::: Caroline ::: (view all by) ::: October 07, 2008, 01:41 PM:

I have a 20 gig (I think) photo iPod that has been superseded. It is a couple years old but still works fine. Happy to load it up and send it out if it would still be wanted/needed (I can has address? -- can be sent to the email linked from my name). I don't have everything on the 99 Albums list, but I have some, and many things along the same lines. Also possibly audiobooks and podcasts? Escape Pod? Pseudopod?

And, regarding the no paid sick leave note -- is there perhaps a Paypal somewhere?

#26 ::: LauraJMixon ::: (view all by) ::: October 07, 2008, 01:43 PM:

Oh, God. I am freaked.

I don't have a spare iPod -- is there anything else we can do to help?

Keep us posted, Teresa. Thank you.

(And speaking of scary cardiovascular incidents, are you doing OK?)

#27 ::: Caroline ::: (view all by) ::: October 07, 2008, 01:44 PM:

(Okay, so my name now links to my blog. If you click view all by, the URL includes my email.)

#28 ::: Marna Nightingale ::: (view all by) ::: October 07, 2008, 01:48 PM:

OK, I think everyone else has better iPods. I can do some music and I can offer some server space for people who want to send money that way. Let me go figure out the best way to do that and I'll come back and post that here.

#29 ::: Emily ::: (view all by) ::: October 07, 2008, 01:55 PM:

I'm so sorry.

Blessings to all who love him, and my best wishes for health for the man himself.

#30 ::: Marna Nightingale ::: (view all by) ::: October 07, 2008, 01:58 PM:

Of course I meant "for people who want to send music that way."

Well. Teresa DID suggest we think about that other problem... apparently I'm very suggestible.

#31 ::: Nina A ::: (view all by) ::: October 07, 2008, 02:01 PM:

Oh, no. I'm fairly sure I have an extra iPod dock here somewhere. I shall begin looking now. Best wishes to him and his loved ones.

#32 ::: Eileen Gunn ::: (view all by) ::: October 07, 2008, 02:06 PM:

John and I send Scraps and Velma both our love and encouragement.

Eileen & John

#33 ::: Gavin Edwards ::: (view all by) ::: October 07, 2008, 02:21 PM:

Patrick/Teresa: Please email me the best (work?) address to send a FedEx package so it will get to one of you. If I get the iPod out this afternoon, Scraps should be able to have music by tomorrow evening.

#34 ::: Clifton Royston ::: (view all by) ::: October 07, 2008, 02:23 PM:

Again, best wishes and hopes.

It sounds like music is well covered; when the money hat is set up, I'll be glad to kick in something, however inadequate.

#35 ::: Dan Layman-Kennedy ::: (view all by) ::: October 07, 2008, 02:25 PM:

I don't have equipment to donate, but I can send some music on CD. If there's an address for that, whoever's coordinating should feel free to drop me a line at the addy in my VAB.

#36 ::: Mez ::: (view all by) ::: October 07, 2008, 02:30 PM:

Aaargh! Ran into this on Open Thread 114 while catching up after a busy exhausting time. Thanks especially to Velma, and Teresa and Elise for bringing us news.

I hope it is some comfort to know that there's a web of people linked around the whole round globe who are concerned and hoping good things for Scraps/Soren and Velma. For us far away with little effect there, at times like this it can also be comforting to remember "They also serve who only stand and wait". (Milton)

Going back to Our Hostess' recent health-related incident, for non-prayers who are sending their good wishes, Xopher at #189 in 'Remembrances and anniversaries' has one recommended method and Pyre at #358 and #386 in 'Either a heart attack, or a Greek of the same name', suggests a variation, conversing with Xopher at #382, who said: "the green [Tara] is primarily associated with rescue from danger, while the white is more associated with longevity". I hope for both for you there.

#37 ::: Mary Dell ::: (view all by) ::: October 07, 2008, 02:43 PM:

Oh no. Scraps, best wishes for a good recovery.

Can someone set up a paypal drop for well-wishers to send cash?

#38 ::: D. Potter ::: (view all by) ::: October 07, 2008, 02:46 PM:

I, too, am on the wrong coast, but prayers will be sent up tout de suite--Soren and Velma are two of my favorite people.

#39 ::: Michael Roberts ::: (view all by) ::: October 07, 2008, 02:46 PM:

The lack of a safety net is inherent in the concept of "freelancer". I'm a freelancer. If I fall ill, I'm screwed. So far, at 42, it's never been a serious problem.

Beyond moving to Germany, I don't see that there's much we can do about it. The United States is certainly never going to have an equitable system -- it costs too much to have to worry our beautiful minds about the plight of the unfortunate.

I feel a quiet sense of desperation when I see online communities responding to situations such as this. It's great, and I'm immensely happy that Scraps (whom I don't know) is finding at least a little help in this dire calamity. But what about all the other 44-year-old stroke sufferers with no coverage who don't know any Nielsen-Haydens?

Life is way scarier than it should be. Maybe I should move back to Europe. Their economy is stronger anyway.

#40 ::: Mary Dell suggests a Ouija board ::: (view all by) ::: October 07, 2008, 02:55 PM:

When my sister had her stroke, she temporarily lost all speech, movement on both sides, and her vision became blurry. She rapidly recovered movement on the left side but not the right, and she was able to point to a Ouija board to spell out things and communicate despite the blurry vision and the aphasia.

After a few months of therapy she recovered her speech and much of her right-side mobility, including being able to walk and stretch out her right hand, and she learned to write and do other dominant-hand stuff with her left hand (previously not dominant). So, you know, not 100% but also not sidelined for good.

Anyway, a Ouija board might be a good thing to find or make; hopefully he'll get better motor control on his good side as things progress and this is something that doesn't require any fine motor skills.

#41 ::: Xopher ::: (view all by) ::: October 07, 2008, 03:04 PM:

If you're going to make a pointing board, lay it out in ETAOINSHRDLU instead of ABC or QWERTY.

Also, we don't know that he can't write. Not explicitly, anyway. I seem to remember that he's right-handed, so it would be tough, and they may have thought it inadvisable for him to make the effort just yet.

Of course he may recover some speech before we can get any of these plans in motion. I hope for that.

#42 ::: Mary Dell ::: (view all by) ::: October 07, 2008, 03:10 PM:

I'm not suggesting it as a long-term solution :) - just a quick way to allow him to spell out things that he wants, water/music/lights etc. Since TNH said his left arm and leg are twitchy I figure writing is probably not currently an option (and pointing probably isn't, just yet, either, but hopefully will be soon). Also aphasia can take odd forms and make it harder to conjure letters than to recognize them.

I'd recommend *not* laying the letters out in an unfamiliar order, FWIW.

#43 ::: Ken MacLeod ::: (view all by) ::: October 07, 2008, 03:11 PM:

Aw shit. I only met Scraps once, and it's still vivid. Best wishes to him and Velma - and to Patrick and Teresa.

#44 ::: Lila ::: (view all by) ::: October 07, 2008, 03:14 PM:

No need to reinvent the wheel; the hospital is likely to have communication boards of various types, including ones with pictures of likely needs/wants.

#45 ::: Xopher ::: (view all by) ::: October 07, 2008, 03:15 PM:

Hmm, given Scraps' history and knowledge base I'm not certain ETAOINSHRDLU counts as an unfamiliar order, but perhaps you're right.

#46 ::: Kate Nepveu ::: (view all by) ::: October 07, 2008, 03:17 PM:

People I like need to stop going in the hospital.

Best wishes to all.

#47 ::: Kip W ::: (view all by) ::: October 07, 2008, 03:22 PM:

God, I hope he's already better. I'm in denial over this right now. If there's anything I can do at all, please tell me what!

Listen, I'd be happy to lay out a speech sheet for him. I'm thinking of something with letters but also a bunch of often-used names and words so he doesn't have to go a-b-c for everything. I'll start working on it, and can send a PDF that would fit on, say, two 8-1/2 by 11 sheets taped together (card stock preferred).

Soren, old man, please tell that blood to circulate through you and carry that oxygen to the proper places. My atheistic old heart is praying for your swift, boring recovery.

#48 ::: Leslie in CA ::: (view all by) ::: October 07, 2008, 03:22 PM:

Sending good thoughts and prayers for Scraps' recovery, and comfort to all who love him.

#49 ::: DBratman ::: (view all by) ::: October 07, 2008, 03:34 PM:

So, um, if we want to send some music, how do we do this? Is someone's e-mail accepting mp3s?

#50 ::: Bruce Cohen (Speaker To Managers) ::: (view all by) ::: October 07, 2008, 03:41 PM:

My computer is out for repair; I only just found out about this a few hours ago when I got an email that was mistakenly sent "reply-all" that mentioned that something had happened to Scraps. I hate getting news like this, but I would hate even more not knowing, and I really hate finding out by accident because I'm out of the loop. And I agree with meryl, Someone Up There is Doing It Wrong.

I'm on the left coast, so not much help, but if you need another iPod, I have a 1 gig Shuffle that just sits on my night table, replaced by a Touch.

It would be nice if one person volunteered to manage the hat-passing, when the time comes. I'm sorry I can't; I have some medical things that are in the process of being taken care of that use up more of my time than I can spare from my job as it is. But I will be more than glad to add to the hat.

May whatever forces Scraps believes in help him to a better time.

#51 ::: mcz ::: (view all by) ::: October 07, 2008, 03:46 PM:

My best wishes and prayers to Scraps and Velma.

#52 ::: Barbara Nielsen Dowell ::: (view all by) ::: October 07, 2008, 03:53 PM:

Love and best wishes to Soren and Velma. He is far too young for this horribly scary activity. TBNH, take care of yourself, too.
BJ and Soap

#53 ::: Hal O'Brien ::: (view all by) ::: October 07, 2008, 03:56 PM:

I've passed this along to scaps' friends at USSMariner.com. I hope he has a full recovery.

#54 ::: Hal O'Brien ::: (view all by) ::: October 07, 2008, 03:58 PM:

...and that previous post shows why I can never really be a copyeditor or proofreader.

#55 ::: RMKrist ::: (view all by) ::: October 07, 2008, 04:16 PM:

OMG. Damn.

I've only met Soren once but Velma and I go back a ways, although we've been out of touch for a few years. (I don't have a current phone number for her.... shit.)

I guess I'll send her an email... Teresa or Patrick, could tell her that Rosemarie sends her thoughts and prayers for them both (or have her read the comments here). Thanks.

#56 ::: Ron Drummond ::: (view all by) ::: October 07, 2008, 04:19 PM:

I have a mix tape for Scraps, but I don't have Velma's email address. Can you provide it?

#57 ::: Lydy Nickerson ::: (view all by) ::: October 07, 2008, 04:20 PM:

This is dreadful. I've always enjoyed your company, Soren, seldom as it's been. I hope you get a speedy recovery. Warm wishes to Velma as well. This is an incredibly tough row to hoe.

#58 ::: Andi Shechter ::: (view all by) ::: October 07, 2008, 04:22 PM:

I have a boombox but I suspect shipping it would be silly if anyone there has something like it. If not, please email me and i'll package it up and get it out to whomever. I found it on the curb a few blocks away a few weeks ago. It appeared to be something that someone had, like, in a garage (was a bit dirty) and just didn't want any more. I took it home, plugged it in and it played a CD so it's sitting here. It is am/fm radio and CD player from aiwa (which apparently plays cassettes too?) will ship right away from Seattle if anyone emails and says "why yes,please, that would be useful". (AIWA model CSD-ES220U, if you care) and has batteries too apparently but I haven't checked.
Would this help?

#59 ::: Jim Frenkel ::: (view all by) ::: October 07, 2008, 04:45 PM:

Geez, I didn't know Scraps was in this kind of trouble until I saw an email from inside Tor about Patrick maybe not being in the office tomorrow.

I don't have music for him, but wish I did. I just hope things get better; glad to hear his B.P. is coming down. That is a positive sign for sure.

Never a dull moment, eh? Our (mine, Joan's) thoughts and well-wishes are with him and Velma!

jim f.

#60 ::: Jim Frenkel ::: (view all by) ::: October 07, 2008, 04:45 PM:

Geez, I didn't know Scraps was in this kind of trouble until I saw an email from inside Tor about Patrick maybe not being in the office tomorrow.

I don't have music for him, but wish I did. I just hope things get better; glad to hear his B.P. is coming down. That is a positive sign for sure.

Never a dull moment, eh? Our (mine, Joan's) thoughts and well-wishes are with him and Velma!

jim f.

#61 ::: Rafe ::: (view all by) ::: October 07, 2008, 04:58 PM:

So horrifying to read this news. He and Velma are in my thoughts.

#62 ::: Steven Gould ::: (view all by) ::: October 07, 2008, 05:02 PM:

I've known Scraps since he wrote me my first fan letter. He was nineteen so that's a quarter century ago. And the story really didn't =deserve= a fan letter, but I was very grateful he sent it.

What a fall we're having. Next one to visit him, send my love.

#63 ::: meredith ::: (view all by) ::: October 07, 2008, 05:16 PM:

Wow.

I've only met Scraps a few times, but I have a very fond memory of attending a particularly kickass Throwing Muses show at Maxwell's with a group of people of whom he was one.

I'm sending all my good healing vibes his (and Velma's) way. And if someone does end up collecting MP3s, I have some I'd love to share with him.

Why does the bad crap always have to happen to the good people?!

#64 ::: Kate ::: (view all by) ::: October 07, 2008, 05:17 PM:

Lots of offers of iPods already, but I've also got one I can send. 15GB, 3rd or 4th generation (whichever one is immediately pre-click-wheel). Battery life is down to about 4 hours or so, but it has a charger to keep it going.

#65 ::: Paula Lieberman ::: (view all by) ::: October 07, 2008, 05:46 PM:

I'm feeling appalled and shocked, at the bad things happening to good people. Here's wishing/hoping for a strong recovery and good things, not bad, happening to Scraps and Velma going forward (and the USA's healthcare nightmare stopping being a nightmare, for people lacking one or more of dayjobs with affordable premiums that stays available when the healthcare coverage gets uses, coverage under such federal programs as Medicare (strange thing how when it's Elders and Medicare, the Repukes aren't calling it "socialized medicine), retiree benefits health coverage, etc.).

#66 ::: Angus MacDonald ::: (view all by) ::: October 07, 2008, 05:48 PM:

I know Scraps from The Well; I'm hoping for the best for him and Velma.

#67 ::: Michael Weholt ::: (view all by) ::: October 07, 2008, 05:52 PM:

I can't give much money, but I'm happy to give more than I should in order to maybe give Velma and Scraps a little peace of mind and maybe something a bit more than a scrap of help. Considering our effed up medical care system (at least with regard to money) I fear even as a group we can't do much to really help, but perhaps there is a way to make a dent in things.

I would like to see a PayPal account set up for those of us who can use credit cards, and a mailing address to which people can send checks. Of course it would be best if someone closer to Scraps could do this -- I have met him only a few times but have always found him to be a fascinating and wonderful guy -- but if no one else can do it, I will gladly do it.

I am as honest as the day is long, to which, I think, people who know me in here can probably attest, and I will give an exact accounting of all monies received. I will do it if nobody else closer to Scraps and Velma can, though I think it would be better if a close friend did it for them.

And I don't imagine for a moment that if even the entire sf community gave $10 it would come close to covering costs, but it might help some.

And I don't doubt there are other deserving people in the sf community who could use such help. I happen to know Scraps and like him and hate to see him suffer this way. So, you know, you do what you can.

If Velma or Patrick or Teresa or someone else certifiably close to Velma and Scraps wants me to do this, please ask. Otherwise, if someone else wants to do this, please let us know the PayPal and/or mailing address.

#68 ::: Madeline F ::: (view all by) ::: October 07, 2008, 06:19 PM:

Wishing all of you guys who know (or are) Scraps the best. Very tough time. Hope it passes as smoothly as possible. Wishing you warm, supported, and getting decent sleep.

#69 ::: elise ::: (view all by) ::: October 07, 2008, 06:39 PM:

Michael @ #67:

I'd chip in. It would be a really good thing if they didn't have to panic about being able to pay the rent, on top of all of this.

#70 ::: Tom Whitmore ::: (view all by) ::: October 07, 2008, 07:18 PM:

I've got a bit set aside for times like this as well -- and we may want to think about some on-going possibilities. And how to make sure the maximum amount goes to the necessaries with the minimum tax implications.

#71 ::: Bruce Adelsohn ::: (view all by) ::: October 07, 2008, 07:24 PM:

Yow. I don't know him personally, but do know Velma. Sending healing thoughts and prayers to both, and concur with Michael @67 -- just let me know the address.

#72 ::: Ambar ::: (view all by) ::: October 07, 2008, 07:27 PM:

Am assisting with a fundraiser for a similar situation in my horse community, and recently learned about the Horsemen's Distress Fund. (We are now funneling donations through them, as they are a 501(c)3.) Does this community (SF professionals, fen, etc) have a 501(c)3 in its pocket for similar purposes?

#73 ::: Penelope ::: (view all by) ::: October 07, 2008, 07:29 PM:

You don't know me, but I'm a long time reader. I have a working walkman CD player (with cheap, but working headphones) that I'd be more than happy to "donate" as I certainly don't use it anymore. (I'm in NYC and while I don't know Scrap so wouldn't feel comfortable going to the hospital, I am at Tor almost every day so could do a hand off there tomorrow)

I assume you can see my e-mail so e-mail me if you need it/want it. I'll also check back later tonight/tomorrow before I leave for work.

I certainly hope his recovery goes well.

#74 ::: Madeleine Robins ::: (view all by) ::: October 07, 2008, 07:41 PM:

Soren and Velma, all my love and good thoughts.

And by all means, let me know where I can send a mite to help with the bills. No one should have to deal with that on top of recuperating from a stroke.

#75 ::: Darkrose ::: (view all by) ::: October 07, 2008, 07:49 PM:

I don't have a spare iThing, but seconding Madeline@74: if there's a collection to help with the bills, please let us know.

#76 ::: Lizzy L ::: (view all by) ::: October 07, 2008, 07:49 PM:

An acquaintance of mine recently had the same sort of stroke, and he has recovered rather well. Just sayin.'

Scraps, I don't know you or Velma, but I don't need to. Thought and prayers. And Patrick and Teresa, prayers for you too. You shine brightly.

#77 ::: Melissa Mead ::: (view all by) ::: October 07, 2008, 07:50 PM:

:sending good thoughts:

#78 ::: MoXmas ::: (view all by) ::: October 07, 2008, 07:50 PM:

Aw, this sucks. Scraps is one of the good people. I'll put the word out to other folks in NYC who know him.

I've never met Velma, but love to her anyway.

#79 ::: Fred ::: (view all by) ::: October 07, 2008, 08:06 PM:

Michael @ #67- That's an excellent idea; when next I speak to Velma, I'll ask her about it, and see if I can't help coordinate something.

#80 ::: Lila ::: (view all by) ::: October 07, 2008, 08:06 PM:

Ambar @ #72, I had never heard of the HDF, but it sounds cool. If SF doesn't have something similar, maybe we should start something. (Incidentally, that sort of mutual-help association was the origin of health insurance, and I think it's high time we went back in that direction.)

#81 ::: Tom Barclay ::: (view all by) ::: October 07, 2008, 08:14 PM:

By any chance, is Scraps a member of SFWA? Probably not or the Emergency Fund would have been mentioned already.

#82 ::: Gavin Edwards ::: (view all by) ::: October 07, 2008, 08:17 PM:

Okay, one loaded iPod is en route to NYC. Velma, I sent it to Bill T., who will swing by the hospital to drop it off (if that's not a good idea, and you'd rather he do the handoff elsewhere, let him know).

#83 ::: Michael Weholt ::: (view all by) ::: October 07, 2008, 08:19 PM:

#79 Fred: Michael @ #67- That's an excellent idea; when next I speak to Velma, I'll ask her about it, and see if I can't help coordinate something.

Thanks. I do work for a 501(3)(c) and it is my feeling that something like this does not require all the hoo-haw involved with making it into a charitable thing. That's a lot of paperwork for probably not a ton of money, not to mention other legal questions. I am not a lawyer and that is not a legal opinion, but I just think it ought to be kept to the level of friends helping friends without it turning into tax-exempt situation.

Some folks we know could use some bucks. We send them some bucks. Nobody needs to make, in the words of 1930s gangster movies, a Federal case out of it.

#84 ::: Lizzy L ::: (view all by) ::: October 07, 2008, 08:45 PM:

People can give other people gifts of money. Money given as a gift is not taxable income. Any one person can give any number of other people gifts of money. The gift does not have to be reported by the recipient; if the amounts given go over $12,000 per year per person gifted, there is some paperwork that needs to be done to avoid tax consequences for the giver -- but it isn't hard to do, any competent tax professional can do it. The giver get no tax deduction.

That's all.

#85 ::: Michael Slavitch ::: (view all by) ::: October 07, 2008, 09:08 PM:

Hey Velma, Scraps is in good hands with you.
Ellie, thanks for being there for Scraps and Velma. Redheads are not to be taken lightly.
For anyone I've missed, my apologies.

Scraps is one tough number and he's got good people at his back.

#86 ::: Lisa Padol ::: (view all by) ::: October 07, 2008, 09:44 PM:

While I'm guessing the music issue has been taken care of, if it hasn't, I'm in NYC, jobhunting and thus, silver lining-wise, free to travel and deliver stuff, and I have a Rio device. It runs on an AAA battery and can take up to 2 gig cards. It can hold considerably less without out a card. It has, nevertheless, served me well, and it is something whose loss in a good cause I would not mourn. Let me know if it's needed. (I have never owned an I-music-device.)

#87 ::: Victor Gonzalez ::: (view all by) ::: October 07, 2008, 10:04 PM:

Christ. I received word from Kate today via a phone message. (And thank you, Kate; that was a commission well carried out.) I saw Soren and Velma last in 2003, while passing through New York on an indirect solo road trip to Seattle. Despite years of physical distance, Soren and I snapped back into our comfortable, trusting friendship in minutes, if not seconds.

Aside from his family, I might be Soren's oldest friend; we met between classes in high school -- I was 15, he was 17 -- while waiting for Mr. Mead to come open up the computer lab. He was Tom Weber then, as he has always been to me. (An unsophisticated fly on the wall, time after time having observed my failure to adapt, might reasonably have assumed that "Tom, no, fuck, I mean Soren," was my friend's full name.)

We spent a year of afternoons talking about music and science fiction, sitting in Seattle Prep's athletic equipment room, in which Soren distributed towels and pads nearly every day, to help cover his tuition.

We spent another year or two, less scheduled, discovering the wonders of the Rocky Horror Picture Show, public radio broadcasting, lysergic acid diethylamide, and women. We walked everywhere, finding that five miles on foot, in conversation or debate, far surpassed the rapid but confining pleasures of Metro Transit.

He has always been as forgiving and patient with my moods and irrationalities as anyone I've ever known. ("You broke my book!" he said incredulously.) We played chess, and published fanzines, and listened to loud rock music. I rarely tired of him; if he tired of me, he never mentioned it. He pushed me, successfully, to resume my education, and never once displayed bitterness that he couldn't afford to take the same path that my grandparents subsidized for me.

I have missed his presence for years, but I was glad that he'd found some relative peace and continuity through a strong relationship with Velma.

I reckon I think of him at least several times a week, perhaps because of the vast influence he had on my cultural awareness. He introduced me to the work of many writers and musicians that I still read and listen to. Scraps has a breadth of experience that promotes his naturally strong critical skills; he showed me what books and bands I might enjoy, and then he often explained why I enjoyed them, lighting the path on which I later grasped and honed my own aesthetic sensibilities. Some 24 years ago he introduced me to fanzine fandom, a community that to this day is the locus of many of my friendships.

Damn. Soren, Scraps, Thomas, Tom: I love you and I miss you and I wish I could afford to get out there and see you. If I could give you what remains of my physical health, I would be honored to do so, to repay your intellectual encouragement during the more difficult moments of my young adulthood. You presented me with real value, value you discovered within me. It's a gift I can still register and measure, despite the personal failures and semi-random abandonments that have subsequently bumpered my sapient career.

(With what sense of grand futility, I wonder, am I continuing to "command" these useless words? We have discovered to this information age a critical limitation: electrons can't convey saltwater.)

In pre-Classical Greece, laboring farmers thought their final end was to be a "Sweet Release" from the burgeoning tortures of old age; it is a fearless philosophy that sprouts in my mind more fervently every year. A fearless philosophy, yes, but it is also blind. Perhaps our personal end is far too close a subject to come into true focus and harrow us as it should. I say: struggle, Soren. Struggle for pain and tumult. Struggle toward rough sensation and livid emotion. Remember that bit of speech from Coriolanus: "Peace? Peace is a very apoplexy, lethargy; mulled, deaf, sleepy, insensible."

Whatever happens, my thoughts are with you. I'm scared, Tom; I'm scared for you and Velma, and I'm scared for me. I hope you will recover from this terrible blow.

I must be strong too, for that is my only defense against helplessness. I look foward to soon renewing our friendship in lengthy conversation; dissonant chords blooming from the speakers, strong drink poured frothy tall, and, if the wall-fly observes carefully, twin smiles savoring recollected contentment.

--Victor

#88 ::: Luke ::: (view all by) ::: October 07, 2008, 10:36 PM:

Victor @87: Damn, that was beautiful.

#89 ::: Ellen Asher ::: (view all by) ::: October 07, 2008, 11:07 PM:

Damn; I know Scraps only through Making Light, but he has all the good wishes I can find for his recovery. I hope it all goes as well as we hope and better than we fear.

Meanwhile, let those of us who don't do Pay Pal know where to send a check.

#90 ::: Paula Helm Murray ::: (view all by) ::: October 07, 2008, 11:09 PM:

Victor, ditto for #88. I'm a bit weepy with that information.

At least when I lost my job we already knew and were treating my hypertension. And our* doctor gave me almost a year's worth of medicine when my partner asked about it at her physical in February.

He also told her that when they ran short to call him and he'd gather up some more. (aside from the hypertension medicine, all I use is an albuteral inhaler for occasional wheezy moments, mostly in the cold, dry months.)

*he sees all three  of us. The bad thing is that Jim and I were covered by my work, Jim is in a four-person sign shop and there is no hope they could cover with insurance.


#91 ::: Loren MacGregor ::: (view all by) ::: October 07, 2008, 11:35 PM:

There is a litany, and it is appalling, of events happening that are universally wrong. Please convey my thoughts, good wishes and prayers to Scraps and to Velma.

What follows is a rant; please feel free to stop reading here.

Lauryn and I were without insurance and surviving by the incredible support we received from Volunteers In Medicine. We are both diabetic and would not have survived without their almost-free medical care. (The cost was designed to offset a small part of their office space and utility bills.)

Until May of this year, we have had "company sponsored" medical insurance at a base cost to us of $12,000 annually with a $15,000 deductible. Several people told us this was very good insurance for the money. I hope that is not true.

Now I'm back at Microsoft and things are better, so that we are able to advance the $250.00 per month for my mother-in-law's out-of pocket medication expenses. These are the costs Medicare won't absorb, and the dollar figure is a minimum.

One political candidate wants to do for the medical insurance industry what he did for the banking industry. I'm voting for the other candidate.

At a charity event some years ago, I sat at the same table with a doctor who practiced in both the U.S. and in Canada. I asked him why. He said, "When I want to make money, I work in the U.S. When I want to practice medicine, I work in Canada."

Of all the crises facing us, though all of them scrape flesh to the bone, the crisis of medical coverage is the one that uses a flensing knife.

-- LJM

#92 ::: Velma ::: (view all by) ::: October 07, 2008, 11:55 PM:

Quick incoherent thoughts:

In the bitterly amusing realm, when a troupe of doctors came into the room this morning, while Teresa and I were sitting by Soren's bedside, the lead doctor concluded that of course the white woman in the room had to be attached to the white man, and spoke directly to Teresa for ... what? five minutes? more? before Teresa could correct her. (A polite person would have asked, "Who is his wife?" An observant person might have concluded that the bald woman with the three gold rings in her head was attached to the bald guy with the three gold rings in his head.)

The same doctor, at the end of the day, told me that the odds of Soren's recovery, and even survival, are very low. (Mind you, she told me this while Soren was in the middle of a nine-minute conscious interaction, first with me, then with Helen, in which he was clearly responsive to words.)

Having said that, he has had several more periods of consciousness, and crankiness, including removing the oxygen thingie from his nose, glowering at it, and growling and removing it each time a doctor or intern replaced it. He only let it stay when Maria, the excellent nurse, said, "You need to take in more oxygen than you can breathe," so he's definitely still there. He glowers when the doctors shout at him, and glowers more when they call him Thomas.

He also responded well to Parsley, Sage, Rosemary and Thyme and Joel Forrester's solo piano work, including "Industrial Arts," so tomorrow I'm bringing in more Simon and Garfunkel (thank you, Patrick), since he knows that note for note. (He wasn't thrilled with the Jobim.)

I thank you all for your good wishes and offers of help. I haven't gotten my head organized enough to do more than get back and forth to the hospital, these late-night updates, and calling my office.

He smiled at me, and patted my hand when I sang "Papa Was a Rodeo" to him; I'm holding on to that.

#93 ::: Bob Rossney ::: (view all by) ::: October 08, 2008, 12:02 AM:

Bedside manner FTW!

I'm glad there's an excellent nurse on the scene. That makes a huge difference.

#94 ::: Michael Weholt ::: (view all by) ::: October 08, 2008, 12:24 AM:

#92 Velma: The same doctor, at the end of the day, told me that the odds of Soren's recovery, and even survival, are very low.

Holy shit. I refuse to believe that. That simply isn't true. I don't give a fuck what any doctor says.

#95 ::: Xopher ::: (view all by) ::: October 08, 2008, 12:32 AM:

I don't buy it either. But I'd especially like to pop that doctor one in the nose.

#96 ::: Rikibeth ::: (view all by) ::: October 08, 2008, 12:39 AM:

A word of advice:

If Soren has allergies, PLEASE stay vigilant, and do not trust that, even with clear markings on the chart and large signs hung in the room, the medical staff will think about all possible routes of exposure.

A good friend had a series of strokes this summer. She's severely allergic to mint, to the point where she'll have trouble breathing if someone walks into the same room as her with an Altoid in their mouth. The allergy was posted all over her room.

When they switched her from breathing tube down the throat to a tracheotomy, naturally dry mouth became more of an issue. So they used hydration swabs as a comfort measure.

Guess what those swabs were flavored with?

This was almost certainly the cause of her cardiac arrest while in the hospital, and undoubtedly set back her recovery a great deal. She's finally shifted out of the hospital and into a rehab facility, which is WONDERFUL, because at one point after the cardiac arrest they were talking hospice.

Don't take anything for granted when it comes to allergies. Question EVERYTHING.

Stay safe.

#97 ::: Adam Burr ::: (view all by) ::: October 08, 2008, 12:39 AM:

That bedside manner is unspeakable.

It sounds like he's in good musical hands, with all the offers above- if there's anyone I don't doubt can send him a collection he'll enjoy it's Gavin. If he winds up with a discman I would be pleased to send him a CD or three to supplement, though.

I've already said this elsewhere, but you're both (all!) in my thoughts and I wish him a speedy recovery. Like the posters above, I refuse to believe Mr Rude Doctor.

#98 ::: geekosaur ::: (view all by) ::: October 08, 2008, 12:47 AM:

Music: Based on the 99 I can offer Dave Grusin's Homage to Duke in the vein of the Ellington albums, and in the light of Meshugga I have SuidakrA's Caledonia, Slipknot's All Hope Is Gone (leaving out the title track!), Testament's The Formation of Damnation, and Soilent Green's Inevitable Collaps in the Presence of Conviction. (I don't have that much "real" jazz, sadly. I'm somewhat amused by someone whose musical tastes are as varied as my own — Duke and Meshugga are almost polar opposites.

#99 ::: geekosaur ::: (view all by) ::: October 08, 2008, 12:50 AM:

That doctor needs his arse kicked... although it's possible that, knowing that Scraps can understand him, he's trying for "dmnt, I'm gonna show him!".

The simple fact that he can understand what's going on around him and communicate to some extent makes his survival pretty likely, along with at least partial recovery.

#100 ::: Lisa ::: (view all by) ::: October 08, 2008, 12:51 AM:

Thank you so much for the updates, from Ken and I.

#101 ::: Scorpio ::: (view all by) ::: October 08, 2008, 12:57 AM:

A dear friend who had a major stroke had a doctor who declared the same stupid (and incorrect)thing, saying that she would not recover -- and she lived another 14 years or so. Sometimes doctors are not right bright.

#102 ::: meredith ::: (view all by) ::: October 08, 2008, 12:58 AM:

In my experience, ICU-based hospitalists have absolutely no clue how to deal with anyone other than unresponsive patients. Their bedside manners are nonexistent. :P

Continuing to send all good vibes toward Scraps and Velma...

#103 ::: Mary Frances ::: (view all by) ::: October 08, 2008, 01:02 AM:

Velma, I am not anything in the medical field, but I've spent a lot of time around stroke survivors. Hemorrhagic strokes are vile, monstrous events, but they are survivable. Every day, every hour, of life after the initial stroke improves the long-term term survival chances. As the blood pressure goes down and the bleeding slows and stops, the survival rates improve. Was that doctor a neurologist specializing in stroke patients? If she wasn't, ignore her. If she was . . . she's still an idiot.

Praying for both of you.

#104 ::: elise ::: (view all by) ::: October 08, 2008, 01:17 AM:

Wow. The doc was a twofer: offensive assumptions about race and partnership, and lousy bedside manner. Sheesh. She's a real peach.

On the other hand, yay for the good nurse.

And many hugs for you and for Scraps. Tell him I intend to come to a piano bar with the two of you in the not too distant future, so he's gotta get his singing chops back, OK?

#105 ::: Arachne ::: (view all by) ::: October 08, 2008, 01:21 AM:

@ Velma #92
The same doctor, at the end of the day, told me that the odds of Soren's recovery, and even survival, are very low.

... I can't believe she said that to you this early. Is she made of magic neurology knowledge? Doubtful.

Best wishes to you and Scraps and hopes for his speedy recovery and that he gets to hear lots of music he loves.

I don't have anything interesting to offer except The Section Quartet, and I don't know if it's something he would like---I don't know very much about modern music (e.g. 20th century or later).

#106 ::: ethan ::: (view all by) ::: October 08, 2008, 01:30 AM:

Can someone in New York punch the doctor for me? Thanks.

#107 ::: Nancy H. & Elric ::: (view all by) ::: October 08, 2008, 01:42 AM:

VELMA -- Elric and I send our love; are you picking up Soren's email? (Turns out the number I have for him, stupidly, is the old apt phone and not his cell. I am an idiot. And probably the worst production manager alive. Doh. So I can't call -- but would if I could.)

We're praying for Soren and for you, though prayers of an Episcopalian-Jew and a nondescript-Quaker are going to be pretty funky.

We love you both and will send music as soon as we can.

#108 ::: miriam beetle ::: (view all by) ::: October 08, 2008, 01:43 AM:

i don't know scraps outside of his comments here & on ethan's blogs, but i've always enjoyed the insightfulness, clarity, & stunning musical knowledge of those.

if he might like to hear that from an internet stranger, please tell him. meanwhile, i'm sending my hopes.

#109 ::: Nenya ::: (view all by) ::: October 08, 2008, 02:51 AM:

I only know Scraps through MakingLight, but he's been one of the people whose name carries good vibes with it. May things continue to improve and shock the doctors in positive ways.

If anyone does set up a PayPal address to donate, please post it here! (Maybe to the main page?) I have a little bit of money this month to go to a good cause (I was earning money while visiting Nicole LeBoeuf-Little last week--wonderful time!) and would be very glad to send it to help out Scraps and Velma.

Prayers and hugs.

#110 ::: Kathryn from Sunnyvale ::: (view all by) ::: October 08, 2008, 03:12 AM:

Whatever that ICU doctor wanted to say--and I know from experience that they'll give the worse case scenario-- saying it in front of the patient is wrong. Tell them not to do it again. Have other doctors/nurses say something positive (like @103) in front of him.

I've twice had ICU doctors tell me bad probabilities for someone (much older, not as strong) and in both cases they pulled through.

Local family had someone in the ICU room as much as we could, and we always assumed he could hear us. I'm a night person, so I came in at 10PM and stayed until four. Anytime the machines beeped loudly, anytime his heart rate moved from probably sleeping to possibly awake, I'd start with the same phrases: "Hey, it's me, K. Don't be confused: you're in the hospital because X happened. They're giving you extra oxygen to help you breath, and medicines... That beep just means they need to change the IV--you'll be back asleep soon. Don't worry about those beeps. We've got a great team of doctors here. They say once you get to A and B you'll be out of here and into a regular room..."

With that, we tried to keep him from ever being awake and confused. We absolutely and relentlessly made sure he heard a positive message of what he needed to do, which was to believe us, to not worry*, to get better*, and to feel loved. (and then I'd talk, or when one-sided conversation grew difficult read out loud short articles, reader's digest vignettes, nothing too long.)

That's all I could do, that's what I did. Of course the doctors and nurses and vancomycin and everything else out of our hands was probably 98% of what helped him, but that 2% was the entirety of my focus.

Wishing you strength in this.

---------------
* there's a place for unslanted truth, but the ICU isn't it (not in the case I'm writing of). When he didn't have wakeful rational thought (able to draw on his own reserves), we didn't give him information that required those reserves. What was too negative we kept hidden behind visine and pancake makeup. We had to tell the truth, sure (in case a doctor misspoke--a sudden surprise wouldn't have helped), but we got to control the interpretation.

#111 ::: edward oleander ::: (view all by) ::: October 08, 2008, 05:15 AM:

Velma - All my best wishes to you and Scraps. Even disagreeing with him (which happens rarely!) is an enlightening experience because he makes you think... and really understand what the discussion is about. You and all the people here on ML who get to know him in real life are very fortunate, and I get the impression that he's a lot tougher than that dipshit doc gives him credit for...

If you need to let off some tension in all this, I would recommend an animated discussion with the Patient Advocate or Ethical Practices representative at the hospital. As a nurse, I found what that numbnuts MD said to be infuriating and completely inexcusable. The only medical job he should hold is as a test subject for pain-heightening drugs. I'm supposed to be therapeutic, so I would LOVE to therapeutically put his tongue through a pencil sharpener...

#112 ::: Eimear Ní Mhéalóid ::: (view all by) ::: October 08, 2008, 05:18 AM:

Just to add my thoughts and wishes. I've seen someone in much worse condition (comatose for 3 weeks, paralysed for much longer) achieve a decent level of recovery and would have thought the prospects sounded pretty good for Scraps, considering his level of function now and his comparatively young age. The human brain is amazingly plastic.

As Katherine says, there is a reason they give you the worst case scenario. But your own assessment doesn't have to agree with that.

Crankiness, besides being perfectly understandable in the circumstances, is a common effect of any insult to the brain.

It shocks me yet again that you and other Americans in similar positions have to worry about monstrous bills in this situation. Even the inadequate Irish public health system would do much better.

#113 ::: heresiarch ::: (view all by) ::: October 08, 2008, 05:48 AM:

Best wishes for Scraps. I don't know him except through his posts here, but that's a good way to know him: I second (or third or whatever) abi's praise of his good humor and wisdom. There's many a flamewar that wasn't because of him.

Get better soon. The world needs voices like yours.

#114 ::: Mez ::: (view all by) ::: October 08, 2008, 06:06 AM:

Re doctors and their prognoses: Stephen Jay Gould, on his diagnosis with mesothelioma, 20 years before dying of a different cancer, wrote 'The Median Isn't the Message'. Is good.

#115 ::: skzb ::: (view all by) ::: October 08, 2008, 07:11 AM:

One thing that is useful (I know from personal experience) is to send a box of candy to the nursing staff, with a note thanking them for taking such good care of your friend.

#116 ::: Velma ::: (view all by) ::: October 08, 2008, 08:47 AM:

I should clarify: I had stepped out of Soren's room to tell the doctor he was having a longer period of lucidity, so he didn't what she said. While I was outside of the room, Helen was continuing the conversation with him: he'd recognized her voice, was waving his hand and responding to her, and nodded when she told him I was outside, talking with the doctor.

I have already asked all three of the patient advocates for a taser. The Director of Patient Relations (who is helping me figure out how to get health proxy rights*) wants to borrow it, should I get one.

Mind you, she's the only one who's been that ...well, that way with me. Most of the other staff have been polite and cheerful. Maria's been amazing, and I think Soren responds to her better than anyone else there.

* And those health proxy rights... Soren's not lived with his parents, who are in Seattle, since some time in the mid-80s. He's lived with me for seven years; we've been procrastinating about getting married for seven and a half years or more (we knew that we wanted to share our lives within six weeks of our first date).

Guess who are his health proxies, by law?

That little detail has caused one other doctor not to tell me (in the hospital with him) as much information as he's told Soren's mother.

His parents can -- and will -- send a letter to the hospital ceding as many of the rights as they can to me; they understand our relationship, and love me. But they can't give me complete control.

If you're not married, research health proxy forms, please. And get your blood pressure checked.

#117 ::: Jo Walton ::: (view all by) ::: October 08, 2008, 08:49 AM:

Velma: That doctor, as well as making racist assumptions, can't know. It's too soon.

Through all of this it's been giving me flashbacks to my grandfather's stroke. It sounds very similar -- even to the nursing staff insisting on using his formal name. (They said he wasn't responding to his name -- well, if you'd been "Jack" your entire life, "John" doesn't make you look round, no matter what it says on your birth cert or medical records.) He was much older, of course, but he made a good partial recovery. He came out of hospital and, despite remaining paralysed down one side, lived at home and talked and engaged with life for another seven years. He was 71 when he died. Scraps is that much younger to start with and has that much more probability of bouncing back.

My heart goes out to you both.

Michael: How about if we organized a "benefit" where SF people raise money for this? The people reading my LJ donated over $3000 for the John M. Ford Memorial Library fund. Soren copyedited for a lot of people who might not be in a position to give much money but who might well be able to donate a story other people would bid for, or a redshirt Tuckerisation or something of that nature, to encourage others to give.

#118 ::: Nancy C. Mittens ::: (view all by) ::: October 08, 2008, 09:21 AM:

Would Scraps like a small handmade toy, or a scarf, or fingerless gloves, or slippers or something? I have not much money but I have a pile of inexpensive yarn, and the time to make and ship something off to NYC.

#119 ::: Serge ::: (view all by) ::: October 08, 2008, 09:24 AM:

Velma... Again, and never enough, my best wishes to Scraps and you.

#120 ::: RMKrist ::: (view all by) ::: October 08, 2008, 09:36 AM:

Velma, along the lines of Nancy C. Mittens question -- is there a scarf or shawl or something you'd like to cuddle with. I crochet (and have been doing it big time for months now) and have lots of yarn in my stash.

Continuing to think good thoughts for you and Soren.

#121 ::: JJ Fozz ::: (view all by) ::: October 08, 2008, 09:38 AM:

I've looked thru Scraps' 99 albums, I have a few I can burn and send.

Is there an address someone can email to me?

I can get to it tomorrow. I have a midterm this evening. My prayers and good vibes go out to both of you.

That doctor needs a cockpunch.

#122 ::: beth meacham ::: (view all by) ::: October 08, 2008, 10:05 AM:

Oh, Velma -- I'm sending you as much strength as I can squeeze into the aether. I'm so glad that Scraps has you there to fight for him.

And so glad that his parents can cede that proxy to you.

Let people take care of you as much as they want to. You need help too.

#123 ::: Bill T ::: (view all by) ::: October 08, 2008, 11:01 AM:

Hi everyone -- this is Bill, a Scraps-friend in Brooklyn not generally known to most of you. Gavin is fed exing an ipod to me here at my office. I think it'll arrive tomorrow, and I can drop it by Methodist after work if I can coordinate a way for someone to get it (Velma, I don't want my schedule to be an additional burden to you; I'll follow up with an email). It sounds like this is just one of many musical efforts, but more, I would think, is better.

Anyone who wants a similar route to send stuff (cds, etc) from afar is welcome to use my work addy to ship and my delivery service to get it there. Email me at btipper AT book DOT the usual com and I'll give you the info.

#124 ::: Lizzy L ::: (view all by) ::: October 08, 2008, 11:10 AM:

Velma, there's a book you might look for; My Stroke of Insight. I'm blanking on the author's name, sorry. It's new. It's written by a neurologist, a specialist in researching brain function, who had a hemmorhagic stroke when she was 35 or so. It's all about what worked for her recovery, and yes, she recovered, wrote the book, is back at work, etc. There may be useful stuff in there for you in dealing with Scrap's recovery process.

Hang on.

#125 ::: Martin Declan Kelly ::: (view all by) ::: October 08, 2008, 11:16 AM:

Scraps and I have had a lot of knock-down-drag-out fights over the years, but that was in large part a source of the high regard I hold him in.

That, and the fact that he taught me how to appreciate music rather than just listen to it.

This breaks my fucking heart. Glad he has so many people close by who love him.

riffraff

#126 ::: Kip W ::: (view all by) ::: October 08, 2008, 11:52 AM:

Velma, thanks for the update. Any bit of information on this is extremely welcome.

I sent Patrick a PDF of a homemade 'point to talk' chart with an alphabet and a few phrases and names and a chunk of the 100 most common words, set up for two letter-size sheets of paper to be taped together. If, as seems likely, he's doing too many other things to stop and read all his mail now, I can send it to you or anybody there who wants to bring it in to him. (And I will take any suggestions people there have and send a new version.)

(Loren, I keep wondering how you are. I'm glad things are going a little better in some ways. Rassf sucks without you, but then it sucks without everybody.)

#127 ::: Fragano Ledgister ::: (view all by) ::: October 08, 2008, 12:14 PM:

Velma: All I can say is hang in there and hope.

#128 ::: Lisa Hirsch ::: (view all by) ::: October 08, 2008, 12:50 PM:

Argh, that doctor is a horror. I am so sorry.

Wishing the smoothest and most complete possible recovery for soren and hoping folks in NY are taking care of Velma.

People on the Well, where scraps is fondly thought of, are talking about a financial barn-raising to help out as we can.

#129 ::: oliviacw ::: (view all by) ::: October 08, 2008, 01:20 PM:

My best wishes for his recovery. My brother-in-law had a small hemorrhagic stroke, hmm, not quite two years ago. They didn't actually get it diagnosed for a while, because his initial symptoms were vertigo and weakness (which can be a lot of things). By the time they figured it out, the bleeding had stopped and it was just a question of waiting to see how he would recover (he did amazingly well - his biggest problem now is a lack of temperature sensation on the right side. He has to be careful cooking!).

The good news is that the human body can do a lot to heal itself. Hang in there.

#130 ::: Magenta Griffith ::: (view all by) ::: October 08, 2008, 01:20 PM:

My thoughts are with Scraps and Velma today, sending energy and healing.

I have known quite a few people over the years who the doctors didn't think would walk out of the hospital, and lived years, even decades, longer. The double cluelessness of that one doctor is appalling.

#131 ::: Xopher ::: (view all by) ::: October 08, 2008, 01:26 PM:

Did everyone see that Velma said the doctor was outside the room? A callous judgement, probably inaccurate, but NOT said in the patient's actual hearing, if I read Velma's post correctly.

Still kind of a jerk, but not quite as egregious.

#132 ::: Vicki ::: (view all by) ::: October 08, 2008, 01:27 PM:

Kip:

Current plan is for me to go visit Soren after work today. If you can get that chart to me by 5:00, I can print it out and take it with me.

#133 ::: Ellen Datlow ::: (view all by) ::: October 08, 2008, 01:30 PM:

I've been out of town and although Ellie called to tell me, I just found the information here.
I'm sorry to hear all the shit Velma is going through and hope that Scraps recovers. Love to them both.

#134 ::: pixelfish ::: (view all by) ::: October 08, 2008, 01:32 PM:

I've still got my fingers crossed for you guys and hoping that Scraps not only pulls through but that he comes back with a vengeance.

(That doctor. What a piece of work. I'd've been downright cranky if that happened to me.)

#135 ::: pixelfish ::: (view all by) ::: October 08, 2008, 01:37 PM:

I've still got my fingers crossed for you guys and hoping that Scraps not only pulls through but that he comes back with a vengeance.

(That doctor. What a piece of work. I'd've been downright cranky if that happened to me.)

#136 ::: Laurel Krahn ::: (view all by) ::: October 08, 2008, 01:40 PM:

Still so shocked and worried. He and all those dear to him are in my thoughts and prayers.

Scraps was a dear friend to me and more when I really needed one. He introduced me to some music and authors I hadn't been exposed to before; we'd also talk for hours about every damn thing.

I'm with the folks who wanted to punch that doctor in the nose. The fact that Scraps is recognizing people and interacting with them is an encouraging sign-- I hope it's the first of many.

#137 ::: Kristen ::: (view all by) ::: October 08, 2008, 02:09 PM:

Patrick and Teresa, this is Kristen, Scraps' sister in Portland Oregon. Regarding Velma's comment at #116, I just called my parents in Seattle and read that to my mother. She said that she had emailed the letter right away, and now she's worried that Velma somehow didn't get it. I know that checking email hasn't been high on Velma's priority list, but do you think you could check with Velma that she has, in fact, received the things that my mother sent her regarding ceding health proxy rights? Mom's going to try calling Velma, also, but we understand that Velma may not be answering her phone at times. Thanks.

Also, Mom sent an email that Mom and I are coming out Sunday through Tuesday. It's got all the details, but the most important thing is that Velma doesn't need to worry about us - we've taken care of our own lodging and will take care of our own transportation, etcetera. We just want her to know that we're coming. (Velma spoke with my Dad this morning, but he forgot to pass on that particular piece of information!)

Thanks. I really appreciate your being an information center for this, your support of Velma, your love and presence to Scraps, and all of the people who are holding Scraps in their hearts and prayers.

#138 ::: ethan ::: (view all by) ::: October 08, 2008, 02:14 PM:

Urk, this is just really hitting me now. I want him to get better right now so I can stop worrying about him.

#139 ::: ethan ::: (view all by) ::: October 08, 2008, 02:15 PM:

And, duh, so he'll be better right now.

#140 ::: beth meacham ::: (view all by) ::: October 08, 2008, 02:25 PM:

Kristin, my heart goes out to you as well. If you see this, please explain to your mother that she'll have to sign some papers at the hospital, in front of witnesses, in order to give Velma a health proxy.

And god bless you for doing it.

#141 ::: Caroline ::: (view all by) ::: October 08, 2008, 02:51 PM:

Velma @ 116, this comment has caused me to think long and hard about my situation with my boyfriend, which would be very much like yours if something were to happen to him.

And this whole situation has caused me to get even angrier about how health care works here.

So the story on music seems to be that Bill T is the point person for music-related donations? Is this correct?

Bill, do you think that Gavin's iPod donation is sufficient hardware, and we should send CDs rather than more gadgets? Or is more hardware wanted or needed?

And has there been a consensus on where to send some assistance with the bills? I would like to send something via PayPal or by check -- either way is fine.

#142 ::: Laurie Mann ::: (view all by) ::: October 08, 2008, 03:16 PM:

Velma, hang in there. Sorry some of Scraps' doctors are such jerks. The fact that he's able to respond to stimuli is an excellent sign.

Please let us know if a PayPal account goes up for helping out.

#143 ::: Michael Weholt ::: (view all by) ::: October 08, 2008, 03:18 PM:

#141 Caroline: And has there been a consensus on where to send some assistance with the bills? I would like to send something via PayPal or by check -- either way is fine.

So far as I know, there isn't, yet. I'm just keeping my "helpful bucks" handy and waiting to see what happens in this regard.

#144 ::: Bill T ::: (view all by) ::: October 08, 2008, 03:24 PM:

I haven't heard back from Velma yet (no surprise, she has more pressing items on her plate), so I don't know exactly what's wanted -- I know that Gavin is sending an iPod, but there's the question of getting new, additional music from various CDs onto a digital player.

I will look at home tonight for a discman -- there may be one that's no longer getting any use. That would be an easy way that CDs could be played, obviously.

To clarify: no one's deputized me to be the clearinghouse for donated music, but Gavin's already arranged to send the iPod through me. And I'm happy to do it, and to ferry other material comforts, as directed by Velma and/or others on the scene. It may be that there's someone else better situated to get music to Scraps; I'm just one option. In any event, if you send it to me here (again, email btipper AT book DOT com for the physical address) I will get it to the patient as quickly as possible.

#145 ::: Dan Blum ::: (view all by) ::: October 08, 2008, 03:29 PM:

Kristen @137:

Based on our experience with these proxies (done in advance when our son is visiting relatives), I suspect an e-mailed document may not be sufficient. However, I am not sure that Beth @140 is correct that the document must be signed at the hospital - what we have always done is write a letter and get it notarized. Of course this will then have to be mailed physically.

It's also entirely possible that Beth is correct - this probably varies by state and I have never done this for New York. The real question is what the hospital says they require, which I assume Velma knows.

#146 ::: Patrick Nielsen Hayden ::: (view all by) ::: October 08, 2008, 03:29 PM:

I'm at work and haven't had time to catch up with this whole thread, but between BillT's iPod and the CD Walkman that ML reader Penelope gave me today at Tor (thanks again!) I think we've got the dispensable-players situation covered.

#147 ::: beth meacham ::: (view all by) ::: October 08, 2008, 03:40 PM:

Dan, I don't know for sure what NY might require. But I am sure that the hospital itself will have the necessary forms on hand, and that the patient advocate will know how to fill them out to get the desired result.

Since Scraps' mother and sister will be present, it seems easier to do it that way than to try to find a lawyer in Seattle who knows what NY needs. Also, with Scraps present and able to communicate his wishes to some extent, it will all be much more binding.

But everyone should watch out for being asked to sign a statement of financial responsibility.

#148 ::: Sisuile ::: (view all by) ::: October 08, 2008, 03:48 PM:

I only know Scraps through his commenting here, but he always has been a person of thought and wisdom.

As for the fundraiser - I know Albacon is this weekend and so is probably too soon, but is there a local con coming up soon where someone can arrange such a thing? Looking at the fanlist, the next biggies I see are Arisia and Boskone. That's three months out. Someone want to take the ball and run with it?

#149 ::: Nancy C. Mittens ::: (view all by) ::: October 08, 2008, 03:53 PM:

New York State has an official health care proxy form:

http://www.health.state.ny.us/professionals/patients/health_care_proxy/intro.htm

I was under the impression that it is the only way to appoint a proxy in NYS, but I could be very wrong.

#150 ::: Tom Whitmore ::: (view all by) ::: October 08, 2008, 03:54 PM:

That's on the East Coast -- there's a possibility I might be able to put something together on the West Coast. I'll drop a note to the Orycon folks, as their con is a bit over a month away.

#151 ::: Andrew Willett ::: (view all by) ::: October 08, 2008, 04:04 PM:

I dashed out to Brooklyn on my lunch break to visit Scraps and Velma. He was intermittently awake -- a couple of deep breaths at the surface, eyes open; a couple of minutes snoring gently -- and intermittently cranky, which I take to be a good sign. He was certainly present enough, even in those brief moments, to answer Velma's questions. We're still in the wait-and-see period, but I have hope.

#152 ::: Jon Meltzer ::: (view all by) ::: October 08, 2008, 04:05 PM:

I was my mother's health care proxy. New York State required a form signed by the individual, the proxy, and two witnesses. It didn't have to be notarized.

I don't know what the procedure is for transferral of proxy rights when none have been formally designated.

#153 ::: Ursula L ::: (view all by) ::: October 08, 2008, 04:36 PM:

Another interesting form for doing a health care proxy is "The Five Wishes."

Nice because it gives a chance for more information than just designating a person as your proxy, and valid in many (but not all) states. (List of states where it is valid, and info on what needs to be done to make it valid, at the website.)

http://www.agingwithdignity.org/

#154 ::: Nevenah ::: (view all by) ::: October 08, 2008, 05:30 PM:

Velma: I have been so terribly worried since I heard about this, and I hope with all my heart that you get a good outcome. I'm glad I had a chance to see you both when I was in NY some years back and sorry we've fallen so out of touch.

I know you're probably overwhelmed with the number of people conveying their best wishes, so I'll just say that I send mine and if that gets passed along at some point to Scraps, that would be nice.

I'll keep reading here to see if there's anything more concrete I can do from this distance. Don't hesitate to let me know if there's anything you need from me.

As a footnote, I find it interesting the number of people on this thread who got the gender of the Dr. in Question wrong. A bit of unconscious social bias still hanging around? Insidious thing, that.

#155 ::: Xopher ::: (view all by) ::: October 08, 2008, 05:44 PM:

Nevenah 154: I find it interesting the number of people on this thread who got the gender of the Dr. in Question wrong. A bit of unconscious social bias still hanging around?

What, you mean the assumption that a male doctor would be thoughtless and stupid, and that a female doctor wouldn't?

#156 ::: Steve Roby ::: (view all by) ::: October 08, 2008, 05:44 PM:

I doubt Scraps would remember my name from my handful of posts in the Well's newmusic conf, where I first encountered him, but he's always been one of the most reliably interesting and intelligent participants in any online forum I've seen him in. Hoping for the best for him and Velma.

#157 ::: Geri Sullivan ::: (view all by) ::: October 08, 2008, 05:44 PM:

#124: The author's name is Jill Bolte Taylor. In addition to My Stroke of Insight, which I haven't read yet, her TED Talk on the subject ranks as one of the TED Top Ten.

#158 ::: Kathryn from Sunnyvale ::: (view all by) ::: October 08, 2008, 05:57 PM:

For these sorts of legal questions--health power of attorney, billing--I'd found the legal forums at freeadvice.com to be a useful starting point.

The forums have a critical mass of competent people answering questions, and because you give your state, the answers you get are more relevant.

Of course it is not a substitute for a lawyer, but it lets you get initial information about what to do and not to do. When I asked about a different sort of question they pointed out some pitfalls to avoid, for example.

And you're anonymous (get someone else to post the question, even), so you can give hypotheticals or ask questions you can't necessarily ask the hospital.

#159 ::: Lexica ::: (view all by) ::: October 08, 2008, 06:26 PM:

#124, #157 (and anyone else interested in the book) — I recently got My Stroke of Insight from the library. It goes into much more depth than she could in her TED talk. (Does not come with the preserved human brain visual aid, though. Thank goodness.)

It's an interesting book purely as a book, as well as informative (I learned more about stroke than I ever knew before). It also might be heartening for anyone who's feeling depressed by Scraps' doctor's pessimistic prediction — seeing how much damage Dr. Taylor's brain had, and seeing how fully she's recovered, might help you not put too much faith in what Dr. Too-Brusque says about Scraps's prognosis. Watching Dr. Taylor's TED talk might be encouraging on that front as well.

#160 ::: Ginger ::: (view all by) ::: October 08, 2008, 08:01 PM:

Lexica @ 159 wrote: "...seeing how much damage Dr. Taylor's brain had, and seeing how fully she's recovered, might help you not put too much faith in what Dr. Too-Brusque says about Scraps's prognosis."

That's very true. I remember a statement by a neurosurgeon that said (or words to this effect) "We can remove scoops of brain, with little effect upon the patient, or you can have a pinpoint lesion with devastating results." We just don't know enough about the brain to be able to make definitive statements like that doctor did, although we can make generalized sweeping statements.

I do have some clinical experience with hemorrhagic strokes, as they are an unexpected and unwanted byproduct of some of our research. Early detection and early treatment is absolutely key. I've seen our patients recover hand and leg function, although they don't speak so they can't "recover" that. Recovery from stroke depends on the location of the lesion, the size of the lesion, and the unknowable internal factors of the patient (drive, desire to recover, luck, family and friends to support, good genes, etc.) as well as on early treatment.

A stable patient at this stage is a good sign. Best wishes to Velma and Scraps for a continued recovery.

#161 ::: LauraJMixon ::: (view all by) ::: October 08, 2008, 08:05 PM:

Just checking in -- Steve and I are keeping Scraps and Velma in our thoughts. Love you guys.

#162 ::: Martha Soukup ::: (view all by) ::: October 08, 2008, 08:13 PM:

I just found out through a mutual friend.

Please give Scraps absolutely all my love.

#163 ::: geekosaur ::: (view all by) ::: October 08, 2008, 08:29 PM:

nevenah @154:
I will confess to using the "generic he", as opposed to gender-specific; while I do sometimes use "they" and (rarely) "s/he", I was brought up with he/his/him used generically and I still use that when not formally composing a statement. (Helped along by Hebrew, Turkish, French, and Spanish doing the same thing and not having alternative formulations to my knowledge.)

#164 ::: elise ::: (view all by) ::: October 08, 2008, 08:51 PM:

Dammit, I want to fly out there and sing to Scraps.

Pesky things like money and time get in the way, dagnabbit. Where's our instantaneous transporter when we need it?

#165 ::: Bruce Cohen (Speaker To Managers) ::: (view all by) ::: October 08, 2008, 08:55 PM:

Lexica @ 159

I heard an interview with Dr. Taylor on NPR which was inspiring: she lost all language during the stroke, but now she is as articulate and erudite as you would expect an undamaged medical researcher to be. Just another proof that we don't know as much as we'd like to think about what we ourselves are capable of.

Velma, remember that a lot of what doctors say is dictated to them by lawyers; there have been lawsuits that claimed that a doctor didn't give the relatives information about the worst possible outcome, so now they often talk about it even if it's not relevant in the particular case, just to cover their asses.

#166 ::: Chris Willrich ::: (view all by) ::: October 08, 2008, 08:59 PM:

Best wishes and good thoughts.

#167 ::: Marilee ::: (view all by) ::: October 08, 2008, 10:18 PM:

Michael, Jo, Caroline, and others, we're working on a donation setup. I'm waiting for some details from Velma before we post.

And in the recovery from stroke -- I had a massive bilateral stroke with six-week coma when I was eight years younger than Soren. The doctors were sure I was going to die. Then I woke up and they were still sure I was going to die. I didn't remember the names of people or things for another six weeks, but that came back. I learned to read, walk, and take care of myself again. I hear Soren is as stubborn as I am.

#168 ::: Rivka ::: (view all by) ::: October 08, 2008, 10:46 PM:

Thinking of Scraps, Velma, Kristen, Scraps's parents, Patrick and Teresa, everyone. And feeling really useless.

Teresa, I hope that you are not straining your own health right now - although I know how impossible it would be to hold back and take care of yourself.

This is so awful.

#169 ::: siriosa ::: (view all by) ::: October 08, 2008, 10:58 PM:

Holding you all in the light: Scraps, Velma, the relatives, TNH, PNH, whoever's organizing the PayPal thingie, the Fluorosphere. Light and healing.

#170 ::: Arachne ::: (view all by) ::: October 08, 2008, 11:09 PM:

I just bought My Stroke of Insight on the Kindle because the Wikipedia entries are making me cringe. A lot. argh argh argh argh argh

I'll be looking for the PayPal link (or similar) when it shows up.

#171 ::: David Harmon ::: (view all by) ::: October 08, 2008, 11:31 PM:

Another who knows Scraps only from ML, but he and Velma have my sympathies and best wishes.

#172 ::: Lin D ::: (view all by) ::: October 08, 2008, 11:44 PM:

From a sporadic poster: Scraps, continue healing. Velma, stay well. Teresa, keep yourself rested as well.

I'll keep my eye out for the hat when it comes around.

#173 ::: Velma ::: (view all by) ::: October 09, 2008, 02:31 AM:

Memory blurs, and I can't figure out where I wrote the notes, but third CAT scan this evening: a little more swelling and slightly bigger blood area than they'd like, so starting him on a medication (mannitol? vannitol?); they've not started a feeding tube yet, because it will just make him even crankier; he refuses to wear the oxygen thingie; he's tried to pull the catheter out once already; he's continuing to recognize voices and body shapes (he'd had his glasses off), and was surprised that our friend Jessica hasn't given birth yet (she's due next month, but he, like me, may have gotten her confused with another friend who spawned about a week ago); this morning he was awake and pretty lucid for about 40 minutes or better; he likes the Simon & Garfunkel... I should burn Mingus Ah Um for him. And perhaps "Maggot Brain."

Visiting hours are 9am to 8pm, and technically, they don't allow more than two people in at a time, and for no more than twenty minutes. So the seven of us who were up there this evening were obviously an illusion. If you want to drop by, late morning to mid-afternoon are good hours, as many people come by after work.

I am amazed and awed by the amount of love and support expressed for both of us. Howard has gotten me a cellphone with unlimited texting and thousands of minutes, so I don't have to keep refilling mine; Kris and Danielle and Liz are cooking for me; Kris is going to come help me with laundry; people are offering money to help with bills and expenses; and everyone says, "Just say 'thank you' and accept," and they don't let me argue. Not that I would: I have no pride where Soren is concerned.

Thank you all.

I worry about sounding too sentimental, but the woman I have been since Soren chose me is ... just so much more than I think I would have been on my own. He is an amazing man, and my heart's favorite song.

#174 ::: adam ::: (view all by) ::: October 09, 2008, 07:54 AM:

Don't worry about sounding sentimental. It's just right.

I am thinking good thoughts for you both, and hope that you'll soon both be out at the piano bars, singing the night away.

#175 ::: Ginger ::: (view all by) ::: October 09, 2008, 09:20 AM:

173: "starting him on a medication (mannitol? vannitol?)"

Mannitol is a compound that shrinks the brain, and may also have some other neuroprotective properties. Shrinking the brain gives you more room inside the skull, and neuroprotection protects against further damage. It's been around a long time.

#176 ::: beth meacham ::: (view all by) ::: October 09, 2008, 09:31 AM:

Velma, we all want to help.

Is there a pay pal address yet?

#177 ::: Bill T ::: (view all by) ::: October 09, 2008, 09:38 AM:

Well, there's some Mingus on the way (not Mingus Ah Um but Pithecanthropus Erectus, courtesy Darius Bacon) when I'm able to stop by after work. Ipod from Gavin with a good chunk of Scraps-friendly music is due to arrive today, so I'll be bringing that too. If the room is already crowded, I'll try to arrange a handoff with someone there.

#178 ::: John Houghton ::: (view all by) ::: October 09, 2008, 10:09 AM:

Some practical advice on dealing with Doctors and Hospitals:

Label the room boldly with the name caregivers should use to address Scraps. See if you can get it in bold on the chart as well (conspire with the Nurses).

Post a happytime picture of Scraps and Velma where caregivers cannot fail to see it. This will give the needed clue of Velma is the partner, and remind them of the desired outcome.

All the little ducklings following Rounds are not caregivers, if they are really annoying they can be made to wait outside the room. This has the downside of annoying the Alpha Duck.

In addition to chocolate, the Nursing staff is fond of flowers that are actually for them, and good coffee.


Hang in there Velma. Scraps? Don't give the bastards the satisfaction.

#179 ::: Jason Hare ::: (view all by) ::: October 09, 2008, 10:27 AM:

Hi everyone,

This is Jason, one of the editors over at Popdose, where Scraps contributed a Name That Tune column every Friday afternoon.

We have decided that for the moment, we will collect PayPal donations until Velma and others can set up something more "official." We are currently working out the logistics. When we know where the donations are to go, I'll post the information here.

We will also be posting donation information at Popdose tomorrow at 12:30 PM, which is when his Name That Tune column was always set to run. We believe we'll be able to attract some visitors who probably make a regular visit at that time to play the game. We will also feature a static graphic/link on the left-side of the page so people can donate any time.

If anybody comes up with a more official means of making a donation, please let either myself (jason at popdose dot com) and/or Jeff Giles, Editor-in-Chief (jeff at popdose dot com) know so we can update our site.

All our best to Soren and Velma, and to all of you who clearly care so deeply. All of us at Popdose are devastated by this news, and are keeping Soren and those who love him in our thoughts.

#180 ::: Vicki ::: (view all by) ::: October 09, 2008, 10:45 AM:

Kristen--Yes, Velma knows your travel plans and that you have a hotel arranged. (She mentioned this yesterday evening while I was there.)

[Putting this here because redundancy is better than omission at times like this.]

#181 ::: Caroline ::: (view all by) ::: October 09, 2008, 10:45 AM:

Marilee, thank you.

I had a math professor who had had a stroke a few years before I took his class. As you can tell by that intro, he was perfectly capable of teaching a graduate-level math course.

He still had some aphasia (and tended to teach the course in math rather than in English -- although I gather that this was not terribly different from how he taught it before the stroke). He could, however, almost always write down the word he meant, even if he couldn't say it aloud (although composing a long piece of written English, like an email, was still difficult for him). He could read fluently and understand spoken language without a problem. And his mathematics was totally unaffected. He says that the day after the stroke, when his language seemed totally gone, he realized that he still had all of his mathematics.

I have not seen him in a couple of years, but he is still alive, well, and cheerfully assigning problem sets that cause first-year BME students to curse creatively and tear out their hair.

My point here is to tell another positive stroke recovery story -- and to say that the brain is magnificent and marvelous, and its powers of recovery should not be underestimated.

#182 ::: Michael Weholt ::: (view all by) ::: October 09, 2008, 11:22 AM:

#176 beth meacham: Is there a pay pal address yet?

Coming very soon. My understanding is that it will be announced fairly loudly when it is ready.

#183 ::: ethan ::: (view all by) ::: October 09, 2008, 11:37 AM:

If I make an mp3 playlist or two for Scraps and upload them to my FileDen account, is there someone I could email a link to who could download them and put them on his iPod? Or is that too much work for busy people?

#184 ::: Bill T ::: (view all by) ::: October 09, 2008, 11:55 AM:

Ethan, if you send the list to me (you can use the linked email here) I will either get it on an ipod or failing that burn and deliver.

#185 ::: Bruce Arthurs ::: (view all by) ::: October 09, 2008, 12:00 PM:

Adding my own best wishes for Scraps' recovery.

#186 ::: ethan ::: (view all by) ::: October 09, 2008, 12:25 PM:

Thanks, Bill--if all goes according to plan, you'll get an email from me late this evening, to deal with as you please.

#187 ::: elise ::: (view all by) ::: October 09, 2008, 12:32 PM:

Velma just phoned me to say that Scraps sang a scale to her!

I want to put a million exclamation points behind that.

#188 ::: Teresa Nielsen Hayden ::: (view all by) ::: October 09, 2008, 12:36 PM:

Elise beat me to it. I was about to post the same thing. Scraps can't talk, but he's still in there.

#189 ::: Bill T ::: (view all by) ::: October 09, 2008, 12:39 PM:

Well damn. That's too poetic.

Tearing up here at work.

#190 ::: Clifton Royston ::: (view all by) ::: October 09, 2008, 12:41 PM:

Oh yes! That's very very good news!

When my best friend's dad lost his speech following a stroke, he gradually got it back by way of singing, starting with nursery rhymes. Singing seems to follow different pathways in the brain.

Velma, maybe ask Scraps to sing a nursery rhyme with you? (Longest known = easiest to bring back.)

#191 ::: elise ::: (view all by) ::: October 09, 2008, 12:50 PM:

John Houghton @ #178:

Some practical advice on dealing with Doctors and Hospitals:

Label the room boldly with the name caregivers should use to address Scraps. See if you can get it in bold on the chart as well (conspire with the Nurses).

Post a happytime picture of Scraps and Velma where caregivers cannot fail to see it. This will give the needed clue of Velma is the partner, and remind them of the desired outcome.

All the little ducklings following Rounds are not caregivers, if they are really annoying they can be made to wait outside the room. This has the downside of annoying the Alpha Duck.

In addition to chocolate, the Nursing staff is fond of flowers that are actually for them, and good coffee.

Oh, those are REALLY good. Yes.

Hmm. And I think I have a cunning plan on how to help from afar, too. Thank you!

#192 ::: Racheline ::: (view all by) ::: October 09, 2008, 12:50 PM:

The scale is great news. Makes me think of what someone said further up about how the professor retained his math while he had to work to reacquire language. A scale is math, of course!

#193 ::: beth meacham ::: (view all by) ::: October 09, 2008, 12:56 PM:

Oh, that's great news!

#194 ::: Martha Soukup ::: (view all by) ::: October 09, 2008, 01:19 PM:

That's beautiful, romantic, and very hopeful.

#195 ::: ethan ::: (view all by) ::: October 09, 2008, 01:34 PM:

Oh my god, that's awesome. Keep it up, Scraps.

#196 ::: Kip W ::: (view all by) ::: October 09, 2008, 01:44 PM:

Ascending scale, of course. Things are looking up!

#197 ::: Xopher ::: (view all by) ::: October 09, 2008, 01:44 PM:

YES! *happy dog dance*

#198 ::: Randi ::: (view all by) ::: October 09, 2008, 02:05 PM:

Friend three times removed, if I've counted right, but hopefully it made sense to chime in.

I know some of the staff at NYM so I called my contact there to see what they usually do about payment for the uninsured.

She was going to send someone down to talk to Velma so hopefully the financial situation wouldn't be a stressor on top of everything else.

The problem was she couldn't find any listing for Soren DeSelby or any of the variations we could come up with, so we couldn't do anything about it.

If someone wants to get back to me with more details so that we can locate his records in the NYM system I will try to facilitate that connection. I'm rimason AT yahoo DOT com

If it would just cause more stress on the two of them to have someone talk to Velma, I'll let that lie.

Also, if they still need the iPod dock or could use a CD player that plays mp3s, let me know. I can drop them off after work.

#199 ::: Lizzie Vixen ::: (view all by) ::: October 09, 2008, 02:10 PM:

So glad to see this news! Thanks.

#200 ::: Caroline ::: (view all by) ::: October 09, 2008, 02:21 PM:

Racheline @ 192, I thought about that after I posted -- math and music are very interconnected in the brain, from everything that I know (I'm no specialist, though).

Hooray for Scraps and his scale! :)

#201 ::: P J Evans ::: (view all by) ::: October 09, 2008, 03:10 PM:

#198
Seeing as the doctors were calling him Thomas (see upthread at 92, from Velma), probably he's listed under his birthname.

#202 ::: Harriet Culver ::: (view all by) ::: October 09, 2008, 03:20 PM:

Randi @ 198 - probably the experts have replied via email but just in case no one has yet, I've just sent you an email suggesting your friend try the name Victor mentioned above @87. Just in case the other folks haven't had net access yet.

#203 ::: Randi ::: (view all by) ::: October 09, 2008, 03:23 PM:

Many thanks for folks that sent me names to work with!

#204 ::: Arachne ::: (view all by) ::: October 09, 2008, 03:33 PM:

I'm very happy to hear about the scale.

I came across some interesting passages in My Stroke of Insight, and one of them was

Since my surgery, I have heard of many stroke survivors who, although they could not speak (left hemisphere), they were capable of singing their messages (both hemispheres).

One important thing too... Jill Taylor also said that it's important to notice every small accomplishment. It took her a while to recover and much longer for simple language, but after some months she was able to type out a simple letter of thanks to all the people who supported her.

(What was interesting to me was that handwriting involves whichever is the language hemisphere of the brain, it depends on which half is dominant, but typing involves both hemispheres, so it's quite possible to regain typing before handwriting.)

Not yet finished with the book, but it's much better than pictures of slices of brains. Although there's an early illustration in the chapter where she talks about the morning she had her stroke, with the usual little image of the brain's profile, and an arrow with a label that said "Jill's stroke here!"

#205 ::: Marilee ::: (view all by) ::: October 09, 2008, 03:45 PM:

I was just checking news before I wrote the blurb for Patrick -- yes, I did math and music, too. They always seemed related to me, the same way so many seemingly complicated tasks are just ordered logistics.

#206 ::: Rose White ::: (view all by) ::: October 09, 2008, 03:59 PM:

Music-handling folks: Do we know if there is a CD player at NYM now that will play CDs of mp3s? Francis and I can burn some of what I think of as the more obscure stuff (Dismemberment Plan, Loud Family) on Scrap's list, and I can drop it off tomorrow (the hospital is 2 stops away from me).

I was just in ICU for a day a couple of weeks ago (appendix!), and I can't remember it, and it was still horrible. My heart is with Velma and Scraps and everyone who loves them.

#207 ::: Kathryn from Sunnyvale ::: (view all by) ::: October 09, 2008, 04:17 PM:

Following up on John @178,

The nurses aides are often the ones who know where the most comfortable chairs are. (when my relative was in the ICU, they had a recliner we kept in the room: much better for napping)

We put a small poster up with his name, photos, and a few facts about him. This gave new medical staff something to talk about with him. "oh, I see you're now a grandpa / play piano / worked in the space program..."

Visiting hours are for visitors. If a friend is coming by to help--to spot someone else some time to sleep, change, etc-- they're not a visitor (same as how a partner stays there in the maternity room while a woman is in labor). And then don't forget to ask for this help. I know at times I'd be so focused I'd forget I needed to head home for a bit.

If there was any one thing that we family might notice before the medical staff did, it was keeping an eye out on liquids (IVs getting low, etc)

For reasons we never figured out, it always took some time to get him one of those electric air mattresses. (The ones that have many compartments and change how much air pressure is in each one. If his medicines are making him move less during sleep, then a mattress that moves for him helps relieve pressure). If it's relevant, ask for one early and often.

#208 ::: Bill T ::: (view all by) ::: October 09, 2008, 04:28 PM:

I think there is or soon will be an mp3-compatible cd player, so it does sound like you could bring those discs.

I am going to deliver an ipod later today, which just arrived from Gavin Edwards, and which has lots on it that falls within Scraps's taste.

If there's as much musical donation as there seems to be, one solution I can think of is this: I can turn a 4GB ipod nano into a "Music from Soren's Friends" device, and load it with mp3s. I can't really alter what's on Gavin's ipod easily, but it's not hard over the weekend to load up mine. So, if you're sending me music for Scraps (either on a CD or via the net) I can try to deliver it that way.

#209 ::: Soon Lee ::: (view all by) ::: October 09, 2008, 04:41 PM:

Just another mostly-lurker adding to the chorus of well-wishers. It's sucky to be going through something like this.

#210 ::: Stefan Jones ::: (view all by) ::: October 09, 2008, 05:04 PM:

Portable CD players that can play MP3s have been out for out least 5 years.

Mine has been collecting dust for four! I'd donate it, but it might be easier for a NYC local to supply one.

#211 ::: Madeleine Robins ::: (view all by) ::: October 09, 2008, 05:33 PM:

The scale is wonderful and very hopeful news. Hope he's singing arias very soon.

#212 ::: Tlönista ::: (view all by) ::: October 09, 2008, 05:45 PM:

So very glad to hear about the scale!

I only know of Scraps from ML comment threads, and am on the other side of the pond, but would like to help in some way. Bill T, are you the right person to send mp3s to?

#213 ::: Ken ::: (view all by) ::: October 09, 2008, 06:51 PM:

Scraps, we've not met other than through an exchange of notes in the CE process but you're in my thoughts. Best wishes for a speedy recovery.

#214 ::: Marilee ::: (view all by) ::: October 09, 2008, 08:05 PM:

Donations to Soren -- We think Patrick has been delayed, and so many people want to donate now, that Michael has set up the donation page on his site. If Patrick posts, we'll make Michael's page refer.

#215 ::: Michael Weholt ::: (view all by) ::: October 09, 2008, 08:22 PM:

Yeah, okay, give now folks! You can send a check, forward funds through your PayPal account, or if you don't have a PP account, you can give via credit card. (Just like Obama's page!)

#216 ::: Kristen ::: (view all by) ::: October 09, 2008, 08:37 PM:

To Randi, at #198.

His legal name is Tom (Thomas) J. Weber. (I'm one of his sisters.)

#217 ::: Sarah ::: (view all by) ::: October 09, 2008, 09:29 PM:

Hello everyone,
I'm Sarah, Soren's younger sister. I feel like I refresh this post every few minutes for news. It comforts me a great deal to see the support that you all are giving Velma, and the love and care that you so clearly feel for and show to Soren and Velma. Being in Seattle and feeling soooo far away has been agony.

I teach first graders, and my little students are also very concerned about Soren. They have been making him sweet cards that say things like "when we sing we are thinking of you"...and they are. Each time we sing a song (and we sing a lot), one child or another will look to me and say, "We're dedicating this to your brother" or "This song is for your brother, right?" It's a little something that makes me smile.

Thank you, thank you to all of you as you do what you can for my/our brother/son/uncle...our family is so grateful that he has all of you.

#218 ::: Mez ::: (view all by) ::: October 09, 2008, 09:33 PM:

Trouble with names in hospital: Mine was mostly listed as Family, Firstname Middlename. Someone would look quickly at a label/wristband/nameplate, the name at the end would be what stood out, and they'd call me Middlename (unlike Edward Gough Whitlam, John Malcolm Fraser, I almost never use it).

So you may need to check someone hasn't listed him somewhere with the "J" as a first name, if the usual searches don't turn up an entry.

#219 ::: Patrick Nielsen Hayden ::: (view all by) ::: October 09, 2008, 10:17 PM:

Apologies for the delay--Marilee's message is now on the front page of Making Light.

The generosity shown so far has been amazing.

#220 ::: elise ::: (view all by) ::: October 09, 2008, 11:16 PM:

Hey, I just put together twenty pairs of little earrings, each attached to a card that says "Thank you for taking care of 'Scraps' (Tom Weber)."

They're for the various nurses, techs, and aides who are looking after Scraps. The idea is to give them a thank-you that will help them remember his nickname.

I can express-mail them tomorrow morning to anyone who can receive them Saturday. Any takers?

#221 ::: elise ::: (view all by) ::: October 09, 2008, 11:18 PM:

... and even if they don't wear earrings, most of them have somebody at home or in their lives they might give them to.

#222 ::: Marilee ::: (view all by) ::: October 09, 2008, 11:25 PM:

Oooh, great idea, elise!

#223 ::: Clifton Royston ::: (view all by) ::: October 10, 2008, 01:01 AM:

Thank you again, Marilee. You're our resident bodhisattva.

#224 ::: Velma ::: (view all by) ::: October 10, 2008, 01:10 AM:

Major update: about 7:00 pm, Scraps said, "I... want..." two or three times, before getting frustrated by not being able to get any more words out. Nurse Singh, who was on duty tonight, like Maria, has been amazing: she doesn't shout at him, she explains why he has to keep the oxygen thingie (what is the word for that?) in his nose, despite the discomfort, and he listens to her. He is enjoying music immensely; the last thing he chose to listen to was Elliott Smith's XO, which is the album he was playing in 2000 when we remet....

Goofy family moment: my nephew, Franklin, came by. He and Soren have done some serious bonding over r&b and hip hop music. Franklin "suggested" that we try something other than Simon and Garfunkel, and chose a Public Enemy/Anthrax song (I don't know the title, but everyone else on the planet seems to)... so we changed from my .mp3 player to Franklin's iPod.

Soren went from eyes-closed, asleep-looking, to eyes-open, turning to us, and glower of "What the F*** are you doing?" in about three seconds. Franklin, of course, said, "It was her idea; I tried to talk her out of it."

I don't think Scraps believed him, but I think we're all in trouble.

Other thoughts: yes, if you're looking for him, he's listed under Thomas Weber, though friends have found him under Soren Weber and Soren deSelby today. it's been interesting, watching the doctors call him Thomas, noting "patient does not respond to name," and then I say, "Soren, it's a doctor who doesn't know your real name," and seeing him turn to me and nod; the nurses seem to get it, though, so he responds well to them.

I've left a container of roasted almonds for the night shift, and will probably bring cookies for the day crew tomorrow.

Kip, it was a descending major scale; I think because I had been singing something that descended in the right way to inspire him. My love, always the music geek.

#225 ::: Tim Walters ::: (view all by) ::: October 10, 2008, 01:46 AM:

I don't know Scraps, but I've been greatly enjoying reading back through his blog. Get well soon and write more, please!

#226 ::: ethan ::: (view all by) ::: October 10, 2008, 01:53 AM:

Velma, that's awesome! Scraps kicks Stroke's ass, any day.

#227 ::: Marilyn Holt ::: (view all by) ::: October 10, 2008, 03:33 AM:

Cliff and I send our best to Scraps. We wish him a full recovery. We hope that Velma takes care of herself, too.

#228 ::: Martha Soukup ::: (view all by) ::: October 10, 2008, 04:16 AM:

Starting to talk already! Very encouraged here on the left coast.

You were driving me nuts wondering what IS the oxygen nose thingie, so I kept googling until I got it: it's a nasal cannula. Invented in 1949 by Wilfred Jones, though his employer got the patent.

#229 ::: Bob Rossney ::: (view all by) ::: October 10, 2008, 04:34 AM:

XO kept me alive through a time I wasn't going to survive. I have great faith in it.

The difference between no words and two words is enormous. I hope that gives him a thread that he can follow.

#230 ::: Velma ::: (view all by) ::: October 10, 2008, 08:14 AM:

(Bob, you've seen this one before.) For anyone wondering why I chose such a bleak album to play for him, this is a post Soren made five years or so ago about Elliott Smith:

http://www.deselbybowen.com/parlando/2003/10/22/goodbye-elliott-smith/

It's a great example of how he relates to music.

I'm heading over to the hospital shortly, and will post updates when I get home.

#231 ::: Kevin J. Maroney ::: (view all by) ::: October 10, 2008, 09:28 AM:

I volunteered in a hospital for several years (yes, I was a teenaged candystriper, though they didn't make the boys wear the vest--I got to wear a real lab jacket) and I never heard anyone actually call it a cannula. It's just "the oxygen feed".

(I am so pleased that he's got words, even if only a few. Please tell him that being frustrated that he can't speak more is like being frustrated that he can't climb the Empire State Building without taking a few breaks. He's strong and smart, he'll understand.)

#232 ::: beth meacham ::: (view all by) ::: October 10, 2008, 09:45 AM:

Oh, words! That's so good. The music is making channels for the words to flow through.

#233 ::: Bill T ::: (view all by) ::: October 10, 2008, 10:00 AM:

I can't believe I missed the words! Must have happened right after I left. Hooray!

Tlönista @212: yes, you can send me mp3s and I'll deliver in some appropriate digital form. I suggest using my gmail account, william period tipper at gmail period com. Please note: I can't check that during work hours, but I'll get on it over the weekend.

#234 ::: Lila ::: (view all by) ::: October 10, 2008, 10:12 AM:

"Nasal cannula" is what we called it when I worked in acute care.

Hooray for words!

Sarah and Kristen and all the other family: hang in there!

#235 ::: ethan ::: (view all by) ::: October 10, 2008, 10:22 AM:

Bill, just to double-check--I e-mailed you at the address linked in your name, not your gmail. Should I re-send, or did you get that OK?

#236 ::: Kip W ::: (view all by) ::: October 10, 2008, 10:24 AM:

Velma, keep him singing! Words are fantastic, but they're even better with the tune.

Tell him I sent a decent, manly hug along. And I'm not crying, I'm just admiring the Winged Victory of Samothrace. Over there.

#237 ::: Clifton Royston ::: (view all by) ::: October 10, 2008, 12:21 PM:

Oh, fantastic!

#238 ::: Gavin Edwards ::: (view all by) ::: October 10, 2008, 05:44 PM:

Hey, New Yorkers: Here’s something you can do to help.

Velma has been at Scraps’ side pretty much constantly, and could seriously use some relief. But for obvious reasons, she wants there to be a friendly and familiar face for Scraps whenever he’s conscious.

If you could take a full day or even a half day off work in the next couple of weeks to come to Methodist Hospital and sit with Scraps, it would be a blessing and a huge help.

Bill Tipper has volunteered to get the ball rolling on organizing a schedule. Email him at
william period tipper at gmail period com
and let him know when you could take a shift (and of what length). Scraps’ mother and sister are about to come to town, so we’re looking to start next Tuesday (the 14th of October) and get a schedule through the end of the month.

(This effort may need organizational help in the future--if you’re interested in being point person after this first fortnight, let Bill know that too in email.)

#239 ::: Marilee ::: (view all by) ::: October 10, 2008, 07:02 PM:

Words! Wonderful!

#240 ::: elise ::: (view all by) ::: October 10, 2008, 08:36 PM:

Earrings for the nursing staff and other caregivers are en route, each with a card saying "Thank you for taking care of Soren "Scraps" deSelby (Tom Weber) - with love, from his friend." Maybe they'll help with the name thing, as well as being a thank-you gift to some of the people working to look after Scraps.

They've been mailed to Ann Q., who volunteered to bring them in. Somebody let me know how it goes, OK?

#241 ::: elise ::: (view all by) ::: October 10, 2008, 08:37 PM:

Ack! If this double-posts, I missed catching it before I could fix the typo: the cards say "from his friends" plural!)


Earrings for the nursing staff and other caregivers are en route, each with a card saying "Thank you for taking care of Soren "Scraps" deSelby (Tom Weber) - with love, from his friends." Maybe they'll help with the name thing, as well as being a thank-you gift to some of the people working to look after Scraps.

They've been mailed to Ann Q., who volunteered to bring them in. Somebody let me know how it goes, OK?

#242 ::: Helen ::: (view all by) ::: October 11, 2008, 09:02 AM:

This is from and IM conversation with Velma this morning:
This, I think is going to be the scary part. They put him on a CPAP machine late yesterday afternoon, and it seemed to help him sleep more soundly (when he's out, I'm having him tested for sleep apnea; that seems likely). But they're going to give him a feeding tube, unless he displays that he can swallow, which he hasn't.

And then he's going to have to be restrained all the time, because he's already been trying to take off the catheter and the cannula. And he'll be restrained, and effectively blinded, with a painful thing stuffed down his throat. and he'll be alone, and scared and angry, and I won't be able to be there all the time.

#243 ::: Velma ::: (view all by) ::: October 11, 2008, 09:13 AM:

Update: They're probably going to start with a feeding tube today, as he was not swallowing/was not cooperating with the speech pathologists. And they have him on a CPAP machine (for anyone who's ever heard my beloved snoring, that seems reasonable) to improve his breathing. This is going to be the point where he's most scared/angry, I think: he can't see, he has invasive painful tubes in nose/throat and urethra, a mask over his face, and restraints. (Did I mention he's tried to pull out the catheter, and to climb out of the bed? Or that he got a grip on the nurse's hand when she was cleaning his mouth yesterday -- which he did not enjoy -- that took both her and me to free?) So familiar voices beside him are definitely good things.

(He got mad at me for siding with the nurse, which... well, hurt, but is to be expected, but he reached over and patted my hand later.)

#244 ::: Kip W ::: (view all by) ::: October 11, 2008, 10:25 AM:

He can't see? That's because of the mask, right? The CPAP? Gahhh.

It sounds like everyone's patience is being tried. Would that I could email you some extra-strength Strength! Instead, here are good wishes and fierce hopes. If there's any music that I have that he wants, I can send it out there. I have "The Music Man" OMST and "The Raymond Scott Project," one of which is on his 99 and the other is a paraphrase of one of his (I am guessing he's already covered for the Beatles, which are the only other things I have from his list in a form that can be sent).

#245 ::: elise ::: (view all by) ::: October 11, 2008, 11:05 AM:

Oh, honey. Continuously praying for ya.

#246 ::: meredith ::: (view all by) ::: October 11, 2008, 01:32 PM:

Oy. If I had all that stuff going on with me, I bet I'd be pissed off, too. :/

When my dad spent 10 days in the ICU, I saw parts of his personality I'd never seen before. The nurses called it "ICU psychosis", and said it's a very common thing. You're in a place where there is absolutely no sense of time -- no day, no night, no weekends, just people constantly bugging you every 5 minutes and machines beeping incessantly and things stuck into you and all you want is for people to leave you the hell alone so you can get some REST, dammit.

Continuing to send all good vibes toward Soren and Velma...

#247 ::: Laurel Krahn ::: (view all by) ::: October 11, 2008, 09:14 PM:

Kip,

The CPAP shouldn't interfere with his sight; as I understand it he's not able to wear his glasses right now and that's why he can't see.

#248 ::: Gavin Edwards ::: (view all by) ::: October 11, 2008, 09:52 PM:

Received in email from Eleanor Lang:


The big news is that Scraps is in fact making progress. The bleeding in his brain has stopped, and while there is still swelling, the doctors expect that it’s starting to go down. All of his vital signs are stable, and he continues to respond well to all neurological stimuli. In short, Scraps is pretty much out of the woods, and we can all indulge in a very small sigh of relief. Yesterday, he was very agitated and was able to communicate that we was in pain. The neurologist came in and ordered a shot of morphine, which took about four minutes to work. He has not needed one since. While yesterday he was alert but highly agitated, today he is more alert but much less agitated, which is a good sign. He received a feeding tube yesterday, and now, for the first time since admission, he is receiving more nutrition than can be administered through an IV. The speech pathologist comes by each day to do a “speech and swallow” evaluation, which assesses his ability to swallow food and control his throat. Today, he showed progress and ate applesauce, which he seemed to enjoy, although he couldn’t manage water, and the speech pathologist seemed to think that this was an excellent sign and said that as soon as he can actually swallow enough calories each day, they’ll remove the feeding tube. It should be noted that yesterday, he would not swallow soft food, but it was vanilla pudding, which he loathes.

Scraps can clearly understand much, if not all of what is said to him. While he has not cooperated with some doctors, it seems to have as much to do with cranky preference as ability; today’s neurologist and speech pathologist were both pretty young women. Yesterday, not so much. He tries to communicate, but has difficulty with hard consonants. He can clearly say some words, like “OK,” “No,” “Where,” “When,” “Now,” and “Home,” but becomes frustrated when he tries to put a sentence together. He has been able to communicate what music he wants, that he wasn’t worried about the manuscript he was working on, and when he wants to sit up or lie down. He knows he is in a hospital, but looks somewhere between panicked and outraged when he’s reminded of why he’s there. Today we tried giving him a pad and a sharpie, and he really understood the concept, couldn’t quite grasp the pen. If there are any OT specialists in the house, suggestions on better tools would be appreciated.

He knows when people are in the room, and when they’re talking to him, however, he doesn’t seem to recognize or track on all people. Part of this is because he doesn’t have his glasses and can’t see. Not surprisingly, he tracks best on the people and voices he knows most well. Similarly, he does best listening to Simon and Garfunkel, Paul Simon, Elvis Costello, and other artists he knows note for note.

While his recovery will be a long haul, the preliminary signs for the recovery look good.

#249 ::: Pat Cadigan ::: (view all by) ::: October 11, 2008, 09:54 PM:

Please give both Scraps and Velma my love. Somehow I missed this, having been tied up with my elderly mother and deadlines for the last week. Please let them both know that I care about what's happening with them and my thoughts are with them.

#250 ::: Kip W ::: (view all by) ::: October 11, 2008, 10:19 PM:

Thanks, Laurel. That's an explanation I can understand!

#251 ::: Terry Karney ::: (view all by) ::: October 11, 2008, 10:37 PM:

My thoughts and prayers. I feel so helpless.

Thank god for the Net, and the amazing connexions it allows.

#252 ::: Magenta Griffith ::: (view all by) ::: October 11, 2008, 11:33 PM:

Re #248
If this is any help, please forward to someone there. Instead of a sharpie, which is smooth and harder to grasp, try getting a dark pencil with the kind of triangular plastic or rubber piece on it that people with bad arthritis in their hands use for grasping a pencil. I hope this is making sense, I've had a long day. But I know someone who needs this kind of add on to hold a pencil and write, and I could see it being useful in this case.

#253 ::: Clifton Royston ::: (view all by) ::: October 11, 2008, 11:34 PM:

Wildly brainstorming:
Do the hospital have a picture board that Scraps could point to to communicate simple needs, like those used with some nonverbal autistics? Or can someone improvise one and bring it in?

Can someone bring him an allowed soft food that he likes?

I'm sure you're already trying to figure out some substitute for the glasses if he can't wear them. I'd be feeling completely nuts in that situation, especially if I couldn't see. Somehow that brings it home. Wish I could do something to help. Still sending Scraps and Velma all good thoughts.

#254 ::: beth meacham ::: (view all by) ::: October 12, 2008, 12:19 AM:

Gavin, thank you so much for posting Ellie's notes. I am very relieved to read that!

To make it easier to hold a pencil or pen, try these: Writing grips.

And in fact, that site, North Coast Medical, may be a useful resource for the future.

#255 ::: Teresa Nielsen Hayden ::: (view all by) ::: October 12, 2008, 12:30 AM:

We're back from the ICU. Scraps is markedly better, but he has a long journey in front of him.

He's forming words again, very laboriously. This evening he had a question that recurred to bug him every five or ten minutes. Most often he'd say Where --?, less often When --? or Do --?; but he couldn't finish the question. At one point, in frustration, he worked his way through where, when, what, and how. "Collect the set!" I told him.

He knows he isn't finishing his sentence, and makes appropriate "Jeez, isn't this stupid and frustrating?" faces. Sometimes, when he's indicating that he knows it isn't working and he's going to give up on it for a while, he says "Well..." and grimaces apologetically.

He brightened up markedly when I told him that McCain/Palin have continued to fall in the ratings, Obama and Biden are contesting areas like North Carolina and West Virgina, and Palin got nailed on Troopergate. He also followed Patrick's not-uncomplicated account of the current state of the polls.

Kip, I pasted up printouts of your charts on sheets of corrugated cardboard. When we showed them to him, he stared for several seconds, then suddenly smiled. I'm betting it was the presence of "potrzebie" in the vocabulary list that did it to him. So: he can read, and he gets jokes.

On the bad side, his right arm and leg didn't move the whole time I was there. He's got a feeding tube run in via his nose. He's only conscious for short periods between spells of sleep. He intermittently has to have his left arm restrained -- he's been messing with his various pipes, tubes, and connections, which he understandably finds irksome.

At the moment, he's a weird combination of confused and incapacitated, on the one hand; and on the other hand, momentary but definite exclamations, gestures, and facial expressions that I'd recognize anywhere as his.

Still. It's a remarkable amount of progress, given the scary condition he was in on Tuesday.

#256 ::: Teresa Nielsen Hayden ::: (view all by) ::: October 12, 2008, 12:34 AM:

Things I forgot to say:

1. He's only forming some words. I don't think he managed a single noun while I was there. He also isn't doing well with any of those sounds you make with the forward part of your tongue.

2. My updates on Scraps can be copied, pasted, passed on, and otherwise treated like a public utility by anyone who wants to use them.

#257 ::: elise ::: (view all by) ::: October 12, 2008, 12:40 AM:

God.

I wish I could send him my sister, to help with the communications stuff. It used to be her job, helping people recover this stuff.

At the very least, she'd make jokes about fannish accents while she worked with him.

#258 ::: beth meacham ::: (view all by) ::: October 12, 2008, 12:45 AM:

I bet his ability to speak improves considerably as the brain swelling goes down.

Is there any way to get him his glasses? Are they forbidden for some reason?

Thanks for the good news, T.

#259 ::: siriosa ::: (view all by) ::: October 12, 2008, 12:58 AM:

There must be hundreds of us projecting ghostly presences into his room, holding him, supporting Velma, cheering him on, holding our breath when he tries to say something. The air is thick with us.

And each of us brings some light. On a spiritual level, I bet you could find his room from outer space.

#260 ::: Velma ::: (view all by) ::: October 12, 2008, 01:19 AM:

I have his glasses with me, and have asked him if he wants them; each time, he's shaken his head or mouthed "no."

I stayed until a very short while ago, because they hadn't put the CPAP on him, and I wanted to be there until he seemed to be sleeping with it. He made very distinct faces at me through it, and tried to stick his tongue out, before he fell into what seemed to be a sound sleep.

They are also trying him on several meds, including the anti-seizure one, through the feeding tube, and if they work, some of the IVs will come out. That will be a blessing, as the swelling in his right arm will go down.

Friends are being amazing. I came home, and the dishes were washed, and the fridge is full of home-made food from our friends in the neighborhood, so that I should not (if I remember) run myself ragged and hungry. (Look, I'm trying to remember to eat, okay? I'm just kinda preoccupied. I haven't even managed to write a journal entry since Monday.)

#261 ::: Serge ::: (view all by) ::: October 12, 2008, 01:30 AM:

Velma... My best wishes.

#262 ::: abi ::: (view all by) ::: October 12, 2008, 04:08 AM:

He knows he isn't finishing his sentence, and makes appropriate "Jeez, isn't this stupid and frustrating?" faces. Sometimes, when he's indicating that he knows it isn't working and he's going to give up on it for a while, he says "Well..." and grimaces apologetically.

Aww, poor guy! I know that feeling, in miniature, from dealing with a language I can't quite speak. Of course, it's lot harder having it be your only channel of communication.

#263 ::: Velma ::: (view all by) ::: October 12, 2008, 08:29 AM:

One correction to Eleanor's email: he was never offered vanilla pudding, but that is one of the test foods they use for swallowing, and I was particularly emphatic about his loathing for it.

I did not mention that he actually ate some soft food. Not really enough to keep him going, but he did swallow applesauce, and mashed potatoes with butter. (He refused the "meatloaf" with gravy, like any sane person: it was a color and consistency that was rather terrifying.)

I am, on many levels, sorry if this makes me sound ungrateful for support, but I have to put the same request here that I have just posted in my LiveJournal.

If you are someone who is not at present on good terms with Soren or me (estrangement, outright feuding, etc. [not plain respectful disagreements online with Soren]) or you are not sure, please be very careful how you interact with me right now. I am on a very short emotional fuse, and frankly, don't have the energy to care right now about how much you've missed Soren in your life, or how much you've always valued him. There will be no hospital bedside forgiveness scenes, or anything of the sort.

Keep your distance, offer your help through intermediaries if you like, but right now, there isn't room in my heart or mind to deal with sudden repentance and changes of status.

#264 ::: Velma ::: (view all by) ::: October 12, 2008, 08:34 AM:

Did I mention that my last surviving uncle died on Friday? I am now two people away from being the oldest generation on my father's side, and one away on my mother's. Shall we say that I am so unthrilled with certain aspects of 2008 that I simply don't have the words?

#265 ::: beth meacham ::: (view all by) ::: October 12, 2008, 11:05 AM:

Oh Velma, I'm so sorry about your uncle. 2008 sucks big-time.

Thanks for replying about the glasses. If Scraps doesn't want them, then that's different. I remember being in the hospital and full of tubes, and the last thing I wanted then was to see it all clearly.

Hoping today brings as much improvement again.

#266 ::: Dave Bell ::: (view all by) ::: October 12, 2008, 12:20 PM:

Velma, this may be a bit of wild thinking, but do the hospital know the prescription for his glasses? If they want to check how he's seeing stuff, it might matter.

#267 ::: JESR ::: (view all by) ::: October 12, 2008, 02:46 PM:

Velma, so sorry about the additional sadness of losing your uncle; I'm down to two uncles and one aunt-by-marriage on Mom's side, after spending most of my life with six uncles, three aunts, their spouses, and cousins like most people have casual acquaintances. The two aunts and an uncle left on Dad's side are going strong, but still, I can see the day when I'm a member of the unquestionably older generation, and feel unprepared for the honor.

Rejoicing that people are caring for you, and wishing reality allowed me more for you than words and prayers.

#268 ::: Terry Karney ::: (view all by) ::: October 12, 2008, 04:40 PM:

Velma: I can't offer much, just hope and kind words. When he is longer alert, I can say he will need an OT. She (the default is female, by about 9:1) will work with you too.

It will make a world of difference, and I wish I could be there to help in a more concrete way (and not be spouting things I know, but which aren't really relevant... it's my way of dealing with the frustration).

#269 ::: Velma ::: (view all by) ::: October 13, 2008, 02:46 AM:

I am home, and very frazzled, but wanted to post a couple of notes about visiting Soren.

1) Please use either Soren or Scraps when addressing him. He does not like diminutives of either, and right now, they add additional irritation and confusion to him, as well as confusing the hospital staff.

2) He cannot speak clearly, but he is aware of conversations around him, and comprehends a good 95% or better of what's said. He will get annoyed if you tell the same story about him more than once at this point, and he will get more annoyed if you speak about him solely in the third person, instead of including him in the conversation. He's there, even when half-asleep.

3) Soren seems to respond to voices pitched slightly higher than normal in most cases right now. Think Mandy Patinkin, rather than Eamonn Walker.

4) The most common question he asks is, "Where am I?" If he nods when you repeat that to him, for consistency's sake, what we've been saying, moderately slowly is, "You are in New York Methodist Hospital, in the ICU. Today is [Sunday, October 12th]; you had a stroke on Monday, October 6th. The bleeding was on the left side of your brain; this is why you have no voluntary muscle motion on your right side, and very little on the left. You have a feeding tube and cannula in your nose." He may ask that more than once in a short period of time.

5) To make things easier for him, phrase questions as "Yes/no," rather than multiple-choice.

6) As he dozes off, he sometimes tries to remove the catheter. This is a BAD IDEA; you may need to take his hand and suggest he do something else.

Thanks.

#270 ::: Velma ::: (view all by) ::: October 13, 2008, 09:20 AM:

Updates:

1) He is improving enough that he may be shifted to the Stroke Unit within a day or two.

2) To clarify: even though he's asking "Where?" he may actually be looking for another word, so asking "Do you know where you are?" or "Where am I?" is the best way to start.

Last night, while he had the BPAP machine on, he ran his hand over my face, then pulled me over so that I put my head (lightly!) on his chest while he stroked the back of my head, then made a face at me for needing a haircut. (I wound up kneeling on that folding hospital chair, so that he could hold me, for about forty minutes, and my back would like a word with me about it, and not a friendly one. But I don't care.)

#271 ::: Serge ::: (view all by) ::: October 13, 2008, 09:36 AM:

Touching is good, Velma.

#272 ::: Caroline ::: (view all by) ::: October 13, 2008, 10:41 AM:

Velma @ 270, I teared up right here at my very public desk reading that, and I don't care. Praying that you'll be able to hold each other in good health, for years and years to come.

#273 ::: Claire ::: (view all by) ::: October 13, 2008, 03:12 PM:

Hey, Velma -

Pretty sure I've found a ginormous 80's style hard glasses case for you. :)

Great to hear that Soren's ready to perhaps move to the stroke unit, even more wonderful that he's reaching out to hold you close -- I'll bet that's the best medicine he's got, hands down.

Oh, and about your back wanting to have a word with you... say when, and I'll be there to hush that back and set it right.

Thinking of you both constantly, I'll be in touch tomorrow. Give Soren my regards,

-Claire

#274 ::: Bill T ::: (view all by) ::: October 13, 2008, 05:17 PM:

Just spoke to Velma and she wanted me to pass this very good news on: Scraps continues to improve and the doctors have told Velma that he’s "out of danger." (those were the words she used on the phone) She expects that he’ll be able to be moved out of the ICU to the stroke unit within a couple of days (I know she said that in the comment above, but it's good to hear it confirmed.)

She wants potential visitors to know that’s he’s responded very well to people singing to him, and today was serenaded with the hymn “How Can I Keep From Singing,” and Elvis Costello’s “Everyday I Write the Book.” Start warming up your vocal cords, people!

On a related note, we’re assembling a schedule of folks who could spell Velma and sit and talk with Scraps – this will allow her to make arrangements at work and do some important things she can’t accomplish at Scraps’s bedside. I’ve only got a few names at present – so if you’re in the NYC area, and have a schedule flexible enough to spend ½ a day at Methodist in Brooklyn (it’s close to the 7th avenue stop on the F train), starting next week particularly, Velma (and of course Scraps) could really use the help. Weekdays are good, but weekends too.

Email me directly if you’d like to be included on the schedule: william dot tipper at gmail dot com. Thanks.

#275 ::: ethan ::: (view all by) ::: October 13, 2008, 05:52 PM:

My god, hooray for "out of danger".

#276 ::: beth meacham ::: (view all by) ::: October 13, 2008, 06:49 PM:

"Out of danger" are beautiful words.

#277 ::: Xopher ::: (view all by) ::: October 13, 2008, 07:04 PM:

Hooray for Out Of Danger!!!!

#278 ::: Epacris ::: (view all by) ::: October 13, 2008, 07:22 PM:

Huzzah! Steps on the road, one by one.

#279 ::: Marilee ::: (view all by) ::: October 13, 2008, 10:17 PM:

Good news! I'm so glad to hear he's moving to the Stroke Unit soon!

#280 ::: Serge ::: (view all by) ::: October 13, 2008, 10:31 PM:

Hurrah!

#281 ::: Kathryn from Sunnyvale ::: (view all by) ::: October 13, 2008, 11:11 PM:

That is great news!

(and getting out of the ICU will mean far more sleep and rest for all--no more constant pings & beeps.)

#282 ::: Arachne ::: (view all by) ::: October 14, 2008, 12:34 AM:

Yay, Soren's out of danger!

Hope he gets to eat things he likes, and not vanilla pudding again.

#283 ::: Velma ::: (view all by) ::: October 14, 2008, 01:30 AM:

Someone has been cranky tonight: refusing to wear the albuterol nebulizer (though he did allow the nurse to hold it to his face for a minute or two at a time, probably totalling five to seven minutes); refusing to wear his hospital gown; and refusing to wear the BPAP mask.

The aforementioned cranky person is also managing the occasional softer consonant, like "d" or "j" (the word "jeezus" has appeared frequently. He's also now getting some of his meds through the feeding tube, rather than in IV form, and the ultrasound showed no blood clot in his right arm: the swelling is just from being immobile and being used to hold a number of IVs.

He is also continuing to eat small amounts of the pureed foods. The shaped carrots and pureed seafood are as scary as the meatloaf. (The carrots and corn look to be the same stuff, just dyed and shaped in different colors, as do the meatloaf and the seafood. When the instant mashed potatoes are the most natural looking food, it's scary.) They brought him vanilla pudding today, and I made them take it back.

Tomorrow (well, today, after I sleep, and visit Soren), I speak with the social person who actually handles the grants and finances for patients without insurance. And then I go into my office for a few hours.

Thank you all, so much, again.

#284 ::: Clifton Royston ::: (view all by) ::: October 14, 2008, 01:39 AM:

Such good news. Still sending you positive thoughts...

#285 ::: Linkmeister ::: (view all by) ::: October 14, 2008, 02:21 AM:

That's wonderful news!

I propose that somebody who's waiting to get into the room do a little research to see whether Gerber's has the food concession at that hospital, based on those descriptions.

#286 ::: Velma ::: (view all by) ::: October 14, 2008, 08:31 AM:

The night shift has loved the earrings (I assume there are some left for the day shift, but I didn't put them away)> Elise, they think you're amazing. The night shift has been very patient with Soren; the day shift nurses, too, but it's much busier in the ICU during daylight, what with more visitors, more doctors, flocks of student doctors, more testing, and the like.

(I was very pleased that the night nurse and the night respiratory therapist let Soren not wear the nebulizer and BPAP, rather than restraining him and running to complete their rounds.)

I'm off to the hospital, then my office, then the social work office. Buzz, buzz, whee!

#287 ::: beth meacham ::: (view all by) ::: October 14, 2008, 09:25 AM:

This is sounding very encouraging. Velma, I hope you can find a minute in this busy day to breathe and relax a little.

#288 ::: Helen ::: (view all by) ::: October 14, 2008, 10:27 AM:

Velma just called me to say that she just got a phone call telling her that Soren is extremely lucid today. He is getting back more letters in his speech. He's eating more food, including yogurt, and is doing so well that the doctors have removed all the IVs and are actively looking to move him to the stroke unit today. If they can't find a bed there, Soren will be staying one more night in the ICU but will definitely be moved soon.

#289 ::: Claire ::: (view all by) ::: October 14, 2008, 11:48 AM:

Wow, that is awesome! Go Soren! I'll bet the sheer awfulness of the food is compelling him upward and outward. :)

#290 ::: Xopher ::: (view all by) ::: October 14, 2008, 12:15 PM:

Didn't I read a study that showed that fiesty/cranky patients have the best chance of recovery? Go Soren Go!

#291 ::: Debbie ::: (view all by) ::: October 14, 2008, 12:29 PM:

Yay!!!!!!!!!!!!!!!!!

#292 ::: Velma ::: (view all by) ::: October 14, 2008, 12:42 PM:

Sneaking in a few minutes while I'm in the office... right now, Kris and Sally (sister and mother) and Ellie are with him, while I run around like a loon in Manhattan, checking in at my office, checking the post office box, etc. When we got in to see him, he was awake, and Nurse Virginia proudly told us that he ate yogurt and oatmeal (two foods he hates), so he's definitely hungry. His neurologist says that he'll be transferred to the stroke unit as soon as a bed is available, so visiting hours may change within a day.

He was very much awake, very responsive, frustrated with his inability to speak clearly, aware of his surroundings (and unthrilled by them), and glad to see people. We got to show him the pictures drawn by his sister Sophia's first grade class (who are singing for him and sending him good wishes), and he enjoyed them. (First graders do interesting art: one had a picture of him being taken on a stretcher to an ambulance; another had pumpkins as musical notes. I may scan some of the artwork.)

His copy of the Oxford American Writer's Thesaurus arrived last week in my office, so I'll bring it to show to him. The promise of that has been making him happy since he ordered it, so it will cheer him up. (Wonder if he'd mind if I looked at it....)

Kip, he really likes your word list. Rose, I have not had time to download your music to one of the devices, but I hope to within the next few days.

I am zipping madly about, but we are much more cheerful and hopeful than we were even yesterday.

#293 ::: jennie1ofmany ::: (view all by) ::: October 14, 2008, 12:50 PM:

Yay disgusting yoghurt and oatmeal! May good things continue to happen.

#294 ::: RMKrist ::: (view all by) ::: October 14, 2008, 01:02 PM:

Velma,

These latest entries on Soren's condition are so good to read.

Continuing to think positive thoughts for you both.

#295 ::: PixelFish ::: (view all by) ::: October 14, 2008, 01:59 PM:

I've been checking this thread every day this week, even though I don't know you (Velma) or Scraps in Real Life, but I'm so relieved to hear that he's being upgraded to "out of danger".

#296 ::: Mary Aileen ::: (view all by) ::: October 14, 2008, 02:30 PM:

That's wonderful news!

#297 ::: Laurie Mann ::: (view all by) ::: October 14, 2008, 05:03 PM:

That's wonderful news!

#298 ::: Stefan Jones ::: (view all by) ::: October 14, 2008, 05:15 PM:

Wonderful news, that is!

#299 ::: Lydy Nickerson ::: (view all by) ::: October 14, 2008, 05:35 PM:

Velma, thanks for all the updates. Yay for Soren moving on to the stroke unit, and more letters, and eating yoghurt and oatmeal (that sounds just grim), and everything else. Good luck with the nice ladies with the paperwork.

#300 ::: Marilee ::: (view all by) ::: October 14, 2008, 06:04 PM:

I like oatmeal! But I agree about yogurt. The nurses kept trying to give me jello and it came back up so often I prefer not to even see it now.

This is really excellent news, I'm so happy!

#301 ::: Lila ::: (view all by) ::: October 14, 2008, 06:36 PM:

I'll have your oatmeal and yogurt, darling, I love oatmeal and yogurt (separately).

Jello, OTOH, is not food.

Velma, congratulations on the wonderful news!

#302 ::: vian ::: (view all by) ::: October 14, 2008, 06:38 PM:

Another who does not know either of you apart from on these boards, rejoicing at the great news, and lighting candles down here in Oz.

Velma, you are an incredible person, and you're doing an amazing job of handling this.

#303 ::: Mez ::: (view all by) ::: October 14, 2008, 07:22 PM:

Happy, Happy! Joy, Joy!
Getting as many as possible of the tubes OFFA ME! and the needles OUTA ME! was such a good feeling. Hope it feels as good for Scraps. (Though the self-dosing morphine feed was pretty nice.)

Jelly (your Jello), smooth porridge/oatmeal, well-scrambled eggs and soup in cups (no spoon) were some foods I relied on in hospital. Taste & texture were OK (for me), and they could be managed, more or less, just with a spoon and not many teeth when I wasn't very physically or visually capable (once someone got the lids off).

Probably this is part of the reason for puree-everything. Half-squished or made into stew/ragout/casserole style is better, but may be harder to do. I wonder if there are nutrition/diet people around who could suggest appetising but practical nummies?

Still thinking supportive & healing thoughts for both, and those gathering 'round.

#304 ::: Lizzy L ::: (view all by) ::: October 14, 2008, 07:29 PM:

Great news!!!

*Lizzy does the Happy Dance for Scraps and Velma*

#305 ::: Tycho Manson ::: (view all by) ::: October 14, 2008, 11:33 PM:

Best wishes to Scraps from an old WELL acquaintance.

#306 ::: Velma ::: (view all by) ::: October 15, 2008, 12:32 AM:

Tonight has been a rough night. He's been moved to the Stroke Unit, which is noisier, of course. His blood pressure has gone up again, scarily so.

During the hours I was there, he refused the albuterol nebulizer the first time, accepted it only when the nurse held it to his face, had difficulty with the new catheter, and, while staring deliberately at me, removed the feeding tube from his nose.

He's now restrained, of course, and they'll probably put a new feeding tube in in the morning.

On the positive side, he's already seen the physical and occupational therapists for a preliminary check-in, and will see the speech pathologist tomorrow.

Still, trying to wrestle him into keeping the feeding tube has exhausted me. Forgive my lack of clarity, please.

#307 ::: Clifton Royston ::: (view all by) ::: October 15, 2008, 01:07 AM:

Velma: Ow. Rough indeed. Hang in there; I can only imagine what you're going through right now.

#308 ::: Rob Hansen ::: (view all by) ::: October 15, 2008, 01:41 AM:

Nothing to forgive, Velma. And please be sure to attend to your own physical needs, too.

#309 ::: Francis ::: (view all by) ::: October 15, 2008, 09:08 AM:

Hi, Velma -- I'm Rose's husband, Francis. If you have a portable CD player at the hospital, you might not need to re-rip those albums; many portable CD players can play mp3 CDs. I'd be willing to make more if it's helpful; will take requests. (^_^)

#310 ::: LauraJMixon ::: (view all by) ::: October 15, 2008, 09:24 AM:

Velma, thanks for these updates! Steve and I have been very worried. I so wish we could be there to lend a hand.

Someone upstream suggested a Ouija board, to make communication easier for him. Can we send one? Would that be a help?

#311 ::: beth meacham ::: (view all by) ::: October 15, 2008, 09:39 AM:

Ach, that doesn't sound like any fun at all, Velma. I hope his BP stabilizes as he gets used to the new surroundings. And that he agrees to let the feeding tube stay in until he can eat more on his own! It must be so heartbreaking for you to see him have to be restrained. I'm so sorry.

Laura, Kip sent a "communication board" which has common words one would need in a hospital on it. Velma said that Scaps was using it and liking it.

#312 ::: beth meacham ::: (view all by) ::: October 15, 2008, 09:42 AM:

Ach, that doesn't sound like any fun at all, Velma. I hope his BP stabilizes as he gets used to the new surroundings. And that he agrees to let the feeding tube stay in until he can eat more on his own! It must be so heartbreaking for you to see him have to be restrained. I'm so sorry.

Laura, Kip sent a "communication board" which has common words one would need in a hospital on it. Velma said that Scaps was using it and liking it.

#313 ::: beth meacham ::: (view all by) ::: October 15, 2008, 09:43 AM:

Oh yikes, sorry for the double post.

#314 ::: LauraJMixon ::: (view all by) ::: October 15, 2008, 10:14 AM:

Sorry -- missed that. Thanks, Beth.

#315 ::: Jane ::: (view all by) ::: October 15, 2008, 10:33 AM:

I laughed a bit at Soren looking you in the eye and taking the tube out. Poor Velma! Poor Soren!

Well, maybe the pleasure of having that thing out of his nose is worth the aggravation of having his hands tied down.

And it is nice to know he hasn't lost his stubbornness. :-)

#316 ::: Marilee ::: (view all by) ::: October 15, 2008, 06:47 PM:

Oh dear. I hope his BP comes back down at a reasonable rate. I don't blame him for pulling the NG tube out, they're pretty awful. Have they explained to him that he has to eat or keep the NG tube because otherwise he might starve to death? That (and the threat of peristalsis) was the only thing that kept mine in, and let them put new ones in when the old ones came up into my throat.

#317 ::: Mez ::: (view all by) ::: October 15, 2008, 09:58 PM:

One day I may get round to writing a longer post/comment about "the lesser of two evils" that's been discussed in political threads. In light of my record, it's unlikely. But it does apply here too.

I've struggled through a lot of pain, humiliation, discomfort, petty everyday awkwardness, exhaustion and much assorted unpleasantness in treatment, rehabilitation and just living on with remaining disabilities from my series of illnesses in the last decade. They continue in varying degree.

My opinion sometimes wavers, but up to now they've mostly been the Lesser Evil compared to death and oblivion (… peace is tempting). For quite a while this is going to be your lives too, along with whatever Good can be mixed in – there's always a bit, somewhere. My hopes go out that you both have the strength, and support for when you don't, to keep on. It's probably worth it.

#318 ::: Velma ::: (view all by) ::: October 17, 2008, 12:24 AM:

By the way, I'm also posting news in my LiveJournal, roadnotes.livejournal.com. I had trouble trying to get this morning's post over here, so you might want to go read that first. (http://roadnotes.livejournal.com/658804.html)

Back to the ICU today, where his blood pressure has gone down to a reasonable level. If it stays down tonight, they'll try to get him back up to the stroke unit. (Mind you, they moved him at 6am, and when I went there, shortly after noon [I'd overslept], they'd left all his belongings upstairs. Hmph.)

He was 18 years old for a while today, again, glaring at me somewhat skeptically, then 44 and wondering why I kept asking him how old he was. At one point, he drank the apple juice they had left for him, then took the little pink pitcher (which Bill had filled with about a quart of ice and water), removed the lid himself, and drank out of it without spilling any on himself. (Which is better than I can do -- I always get ice bouncing down my chin.)

He got very goofy at me this evening, rolling his eyes, and sticking his tongue out. He has more words, when he's awake, and is bouncing back and forth between getting angry and frustrated, and making a face and saying, "Oh, well." He's also asking a lot of questions about time: how long have I been here? how long will it take to leave?

(I did speak with the social worker today, and am not thrilled with the way we have to request the emergency grants, but so it goes.)

He's going through a lot of mood swings, which is to be expected, of course: frustration, confusion, resignation, anger, and "this sucks, but it's also weird" or something like it.

And yes, he did try to climb out of the bed and stand up again, and he got very cranky when I thwarted him again; he forgave me, though, and pulled me over to kiss him before I left for the night.

#319 ::: Julie L. ::: (view all by) ::: October 17, 2008, 12:51 AM:

Yeek. Good wishes and happy thoughts.

#320 ::: Bill T ::: (view all by) ::: October 17, 2008, 01:26 PM:

I'll just add to Velma's note about the episode with the pitcher. Scraps was sleeping when I got there, and after a while stirred. He seemed pretty annoyed and uninterested in V. and I for a bit, but then he seemed to wake more fully and read the note that reminds him where he is.

He began gesturing at the tray full of food and drinkables. Velma went over to help, offering each one in turn. But as he pointed at various cups, the only word he seemed to be able to manage was "no" in a tone that strongly suggested it would take a saint's patience to deal with two morons such as we.

I'm not sure I'm properly remembering the sequence that followed, but basically: first he made it clear that he wanted the (nearly empty) water pitcher. He examined it, tried to drink from it, and poured some on himself. Then we got him to take the cup of apple juice, which he drank with audible relish; the poor guy was apparently parched.

I refilled the water pitcher as Velma mentioned, and soon he took it again (to my alarm, since I thought he'd pour ice water all over his lap). But this time he sat with it and began drinking from it with ease, treating it like a big gulp, and looking at both of us with the particular benevolence of an exasperated man who has for once triumphed over the less imaginative types who so regularly stand in his way. I hope never to forget it.

#321 ::: Kip W ::: (view all by) ::: October 17, 2008, 01:44 PM:

I'm glad the talking board is turning out to be of some use, and thanks to Mary Dell for saying "Ouija Board" way up there in the posts. In retrospect, I wish I'd put the words "monkey" and "dishwasher" up there too, but live and learn.

I'm glad he has all of you guys, especially Velma. Gotta run now; I'm taking Sarah to the dentist.

#322 ::: PixelFish ::: (view all by) ::: October 17, 2008, 01:47 PM:

Glad to hear his BP stabilised somewhat and that he's hopefully back in the stroke unit as opposed to the ICU. Still thinking about you guys.

#323 ::: Mary Frances ::: (view all by) ::: October 17, 2008, 07:44 PM:

Hold it. Scraps is drinking water? And clear juice? Wow. Velma, I don't know if you've spoken to the speech pathologist yet, but I suspect that that's more than just a hopeful sign. I've known stroke survivors who weren't allowed any liquid clearer than heavy milkshakes for months after the stroke . . .

#324 ::: Velma ::: (view all by) ::: October 18, 2008, 09:20 PM:

Well, he cooperated with the speech pathologist, and is now on "soft" foods. However, the kitchen seems to be having weirdnesses: his list of allergies/sensitivities is avocado, banana, pineapple, wrinkly nuts, and artificial sweeteners; so with his lunch today, he got tropical fruit mix and a banana. I've also pointed out that he doesn't drink tea or milk, and he gets those with every meal. The latter I can deal with; the former makes me very antsy. (I mentioned this to the day nurse, and I gather she had words with the dietician.)

He drank most of his chicken broth at lunch, tried a bite of the pureed seafood, and gave me The Look. He had "fish nuggets" as part of dinner, tried one, and I got The Look again, so I asked, "Should I try one?" and he said firmly, "yes."

I repent.

I deeply repent ever trying to convince my beloved to eat one of those things.

Anyway, he's anxious to leave the hospital, and now anxious to start the physical therapy, to escape the food.

#325 ::: beth meacham ::: (view all by) ::: October 18, 2008, 11:13 PM:

Gah. Why all the seafood, I wonder? It all sounds quite repellent.

#326 ::: Bill T ::: (view all by) ::: October 19, 2008, 02:01 PM:

Hi everyone -- I just wanted to everyone here to know two things --

1. If you sent music for Scraps through me, electronically or otherwise, I was able to deliver it in the form of an ipod with the music loaded onto it. Thanks to everyone who did so!

2. If you're a friend who is local to NYC and/or particularly to Brooklyn, and want to help out, Velma is still in need of folks to come spell her spending time at Scraps' bedside for half- or full days. This coming week we've currently got a couple of half-days accounted for, but it would be great to schedule in some additional time so that Velma can attend to some needful things.

While of course it's quite useful to have familiar people schedule some time during the weekdays (which is when more casual visits are difficult for most), it's equally useful to have some planned visits on evenings or weekends. Please let me know via email (william dot tipper at gmail dot com) if you can come for a set time, or if you're already in direct communication with Velma, you can let her know.

Thanks, folks.

#327 ::: Clifton Royston ::: (view all by) ::: October 19, 2008, 02:12 PM:

Thanks so much for keeping us all posted here, Velma! It sounds very hopeful.

#328 ::: Marilee ::: (view all by) ::: October 19, 2008, 06:01 PM:

And to follow on Bill T's note, it took a long time for me to ask for help I needed and I still sometimes put it off.

Those of you who are local might want to make a set of cards for Velma that have things like "Run an errand," "Clean the apartment," "Buy groceries," "Take out to dinner," etc., so she can redeem them when needed.

The neighbor who's changed my smoke detector battery for years moved this year, but there's new neighbors and I'm pretty sure one of them will do it. Sometimes you think there's nothing you can do to help, and you can help.

#329 ::: Velma ::: (view all by) ::: October 20, 2008, 02:02 PM:

Today's news: he survived a night in the "quiet zone" (HA!) of the stroke unit without his blood pressure skyrocketing again, so he's going to be moved to another step-down unit; in two or three days, they should have a preliminary schedule for physical and occupational therapy planned for him, and he may then be moved to another unit on the same floor, or to an outside location.

I am in the office today, for a few hours, and am going back to the hospital tonight, and should be able to make a more detailed report later.

#330 ::: beth meacham ::: (view all by) ::: October 20, 2008, 02:25 PM:

That's good news, Velma. Thanks so much for taking time to keep us updated.

#331 ::: Xopher ::: (view all by) ::: October 20, 2008, 02:26 PM:

Great news! Bright blessings for more of the same.

#332 ::: James D. Macdonald ::: (view all by) ::: October 20, 2008, 04:23 PM:

Everyone who's reading this: Please take a moment this week to get your blood pressure checked. (Many places will do this for free.)

#333 ::: Velma ::: (view all by) ::: October 20, 2008, 05:25 PM:

Since Soren went into the hospital, I've been asking all my friends and acquaintances "When did you last have your blood pressure checked?" The number of people who are answering, "Uhhhh..." is frightening.

Folks, please take the time to do it. Even if you're uninsured, once you know, there are things you can do to help lower your blood pressure.

#334 ::: Joel Polowin ::: (view all by) ::: October 20, 2008, 05:26 PM:

Hereabouts -- and I'm under the impression that it's true elsewhere in Canada also -- many drugstores have self-serve blood-pressure checkers. Not as accurate as a professional test, no doubt, but possibly useful as a quick-and-dirty check.

#335 ::: Madeline F ::: (view all by) ::: October 20, 2008, 05:54 PM:

If you donate blood at the Red Cross, they check your blood pressure for free as part of the screening... Just sayin'. ;) (They also check your iron level!)

#336 ::: James D. Macdonald ::: (view all by) ::: October 20, 2008, 06:37 PM:

Hypertension (high blood pressure) has no symptoms. For many people who have hypertension the first sign is catastrophic illness. Yet the test is fast, easy, and painless. And if caught in time, lifestyle changes (diet and exercise) may be all that's needed to correct it.

(Oh, and don't be too alarmed by one reading out of norm. It's what you get week after week that counts.)

#337 ::: Marilee ::: (view all by) ::: October 20, 2008, 07:57 PM:

More great news, Velma!

I have a wrist BP monitor* and check twice a day (my BP was recently low enough that I got to decrease dosage on the only BP med I take now), but a lot of grocery stores have machines that check BP for free, although they're more likely to be in the general area than exact.

Watch/read your local news because lots of community groups and banks and even restaurants will have a day with free BP checks.

*Huh, 16 new up on eBay for a lot less than I paid years ago.

#338 ::: Epacris ::: (view all by) ::: October 20, 2008, 08:08 PM:

Madeline F #335, it was during one of my regular Red Cross blood donations they picked up my high blood pressure. Treating it cured symptoms I didn't even know were from it, like cluster headaches and giddiness sitting up suddenly.

#339 ::: Serge ::: (view all by) ::: October 20, 2008, 10:14 PM:

Velma @ 333... take the time to do it

Done a few weeks ago, and about once a year. Everything is looking good.

#340 ::: elise ::: (view all by) ::: October 21, 2008, 12:05 AM:

In Minneapolis and St. Paul, you can get your blood pressure checked for free at any fire station. (Guess they like to keep in practice, and meet the neighbors while they're doing it.)

#341 ::: geekosaur ::: (view all by) ::: October 21, 2008, 01:45 AM:

I started taking my b.p. regularly when I went on the Seroquel, which can cause dehydration and low blood pressure — and my average blood pressure is slightly low to begin with (118/76). But I keep hydrated enough that no reduction is noticeable usually (I have rarely seen 110/70).

On the flip side, my dad died of a heart attack complicated by very high blood pressure. (He'd already had 2 heart attacks by the time he was my age; I should probably arrange to get another EKG just to be safe, as the last one was 2001ish.)

#342 ::: David Goldfarb ::: (view all by) ::: October 21, 2008, 06:44 AM:

I also get my BP checked when I donate blood -- my last was about five weeks ago.

And let me put in a word about sleep apnea. Untreated sleep apnea is associated with higher risk of heart attack and, well, stroke. I seem to recall that Scraps was diagnosed with it while in the ICU? I hope he'll keep on using a CPAP machine once he's out of the hospital.

Sleep apnea correlates with being overweight, and with having a thick neck. Symptoms include loud snoring, daytime drowsiness, recurring acid reflux, and waking up in the night with the need to pee. (I used to get up and pee in the middle of the night, practically every night. I didn't know it was a symptom.)

Cally Soukup has a huge file of stories about James Nicoll injuring himself. In recent years he's had his apnea treated, and suddenly the new entries in the file are all funny cat stories instead.

#343 ::: R. M. Koske ::: (view all by) ::: October 21, 2008, 09:07 AM:

#342, David -

Hm. My husband and I both snore slightly. He gets frequent acid reflux and I get up in the night to pee, but I'm fairly thin and he's quite thin. I had episodes of apnea years ago, sleeping semi-upright in a recliner. (I know I stopped breathing because it woke me completely up and there was an eternity where couldn't breathe before I figured out how to relax my throat to resume.) I must investigate more.

#344 ::: Caroline ::: (view all by) ::: October 21, 2008, 09:35 AM:

And many pharmacies here in the U.S. -- like at Target, possibly Walmart, CVS, etc. -- have a little free blood pressure check machine, where you sit in the chair and stick your arm in the cuff and push a button and get a digital readout.

Can't swear to its accuracy, but it's been within the range of my BP numbers as checked by trained medical personnel, so it's at least not way off. (My BP tends to be low-normal.)

#345 ::: Kevin J. Maroney ::: (view all by) ::: October 21, 2008, 10:05 AM:

Because of my build and problems in my nasal passages, I'm borderline apneaic. I have had a tremendous reduction in symptoms in the last few months by treating my chronic nasal inflammation and by learning to sleep face-down rather than face-up. Less pressure on the throat means less constricted breathing. Before I made the conscious effort to go to sleep face-down, I would usually turn over in the night and wake up face-down anyway.

Not all snoring is tied to apnea, but enough of it is that if you seriously snore, you should definitely get checked out.

#346 ::: Velma ::: (view all by) ::: October 21, 2008, 12:11 PM:

Today's update: I received a call, about ten minutes ago, from the head of the visiting nurses, who wanted to verify his address and phone number for future services, because she was told that they are discharging him today.

He still cannot talk clearly, cannot walk, cannot control his bladder or bowels, has no voluntary motion in his right arm and leg, and we live in a third-floor walk-up.

I'm going to leave the office in a few minutes, head down to the hospital, and find his doctor. I dare say that if I'm in jail for attempted homicide, and there's no one at home to take care of him, the hospital will keep him longer.

#347 ::: Caroline ::: (view all by) ::: October 21, 2008, 12:36 PM:

Velma @ 346, if you go to jail for attempted homicide, we will pay your bail. I don't think any jury in the world would convict you.

W. T. F.

#348 ::: ethan ::: (view all by) ::: October 21, 2008, 12:49 PM:

Are you fracking serious? Why would they do that?

Must be a mix-up.

#349 ::: Xopher ::: (view all by) ::: October 21, 2008, 12:50 PM:

Snoring, even without apnea, is a serious sleep disorder and can lead to many of the same symptoms. I had a little apnea before my surgery, but my heart was so strong that my blood oxygenation never dropped. The surgery corrected my snoring, which had been a 7 on a scale of 10.

I'm told I seldom if ever snore now, though I do still talk in my sleep (in languages no one can identify). I have found the BreatheRight™ strips and throat spray helpful. I live alone, so I'm not sure they help my breathing/snoring, but I do know that I get a much better night's sleep with them than I do without.

Velma, there must be some mistake. That's just crazy.

#350 ::: Kip W ::: (view all by) ::: October 21, 2008, 01:02 PM:

Good grief! Maybe the hospital is going out of business. I hope the doctor gives you a better option than that, with a third-floor walkup.

#351 ::: beth meacham ::: (view all by) ::: October 21, 2008, 01:36 PM:

Good grief. They can't discharge him home. They might discharge him to a rehab unit.

I hope that this is some mistake.

#352 ::: John Houghton ::: (view all by) ::: October 21, 2008, 03:11 PM:

Discharge a single adult, who is unable to care for himself, feed himself, clean himself, express himself clearly, or move around on his own? Expecting his roommate* to provide round-the-clock support? Don't kill the doctor, Velma -- the malpractice suit should be much more entertaining.
A Roommate-for-Life, even one with power-of-attorney and health-care proxy is still a roommate in a legal sense, with no legal duty to provide care.

*Isn't reframing a wonderful tool?

#353 ::: Michael I ::: (view all by) ::: October 21, 2008, 06:26 PM:

Xopher@349

in languages no one can identify

Obviously you're getting divine messages in your sleep.

Now all we need to do is find a translator...

#354 ::: Harriet ::: (view all by) ::: October 21, 2008, 06:31 PM:

Velma -

Thinking good thoughts fervently in the direction of the hospital all afternoon, and hoping that rationality might prevail.

#355 ::: PixelFish ::: (view all by) ::: October 21, 2008, 07:02 PM:

Eeeeps. That's not good. Here's hoping people can explain this at the hospital and provide a rational and helpful option. (Such as letting him stay until he's healed more fully.)

#356 ::: David Harmon ::: (view all by) ::: October 21, 2008, 08:11 PM:

Velma @#346: I suddenly have a nasty suspicion that his insurance coverage just ran out....

#357 ::: Lydy Nickerson ::: (view all by) ::: October 21, 2008, 08:20 PM:

They will probably assign Soren a PCA, which will help some, but not so much, really. Can do some of the heavy lifting. But even with a PCA, if Velma goes back to work she may well be leaving Soren home alone for long stretchs of time. A good PCA is made of gold. A friend of mine was a PCA, and he used to stick around and socialize with his clients. (Of course, he also snuck them dope and alcohol on the grounds that they were old enough to know their own minds. He never got caught doing it. He got busted in Oklahoma in a random search. Served 3 months county time and is barred from ever being a PCA again.)

#358 ::: Julie L. ::: (view all by) ::: October 21, 2008, 08:27 PM:

David @356: did you forget the second paragraph of Velma's #483 up in the main entry?

#359 ::: Patrick Nielsen Hayden ::: (view all by) ::: October 21, 2008, 08:38 PM:

Voicemail from Velma: It was a mistake. There is discussion of getting him into a rehab unit, and she will be following up on this tomorrow, but they are not going to be turfing him out with noplace to go.

#360 ::: Mary Aileen ::: (view all by) ::: October 21, 2008, 08:56 PM:

Oh, thank goodness.

#361 ::: P J Evans ::: (view all by) ::: October 21, 2008, 09:25 PM:

Good!
I was hoping it was a mistake. (Someone misunderstanding what they were supposed to be doing was the best I expected.)

#362 ::: beth meacham ::: (view all by) ::: October 21, 2008, 09:57 PM:

Phew. Thanks for the update, P. Obviously it was a mistake, but with hospital bureaucracies, one can never tell how far a mistake is going to go.

#363 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: October 22, 2008, 01:07 AM:

Even if you are being treated for hypertension, you should check your bp at regular intervals. For many people, the correct mix of drugs for treatment can change over time, and having some warning of the need to talk to your doctor about updating dosages is a good thing.

For example, I've been treating hypertension for more than 10 years now, and I'm on my 3rd drug regime, about to up dosages of a couple of the drugs because I've been getting some high readings lately, and because those particular drugs have some effectiveness at preventing migraines.

#364 ::: Kip W ::: (view all by) ::: October 22, 2008, 09:51 AM:

I am somewhat relieved at the good news, and the report of words being uttered -- I should say sung, because "sung" sounds twice as good to me.

#365 ::: Serge ::: (view all by) ::: October 22, 2008, 10:15 AM:

These are not nice mistakes to make.

#366 ::: ethan ::: (view all by) ::: October 22, 2008, 10:59 AM:

Thank god it was one, though.

#367 ::: David Harmon ::: (view all by) ::: October 22, 2008, 11:46 AM:

Julie L. @#358: did you forget...

Indeed I had. Unfortunately, "no insurance" just shifts the question to whatever hidden budget or subsidy covers such patients. Thankfully, the issue seems to be moot for now....

#368 ::: Fragano Ledgister ::: (view all by) ::: October 22, 2008, 11:46 AM:

Glad it was just a mistake.

#369 ::: glinda ::: (view all by) ::: October 22, 2008, 04:09 PM:

Glad it was a mistake; I'm more than willing to contribute what little I can towards bail money for Velma, but am glad I don't have to!

(As I posted in comments on someone's LJ yesterday: Hey, universe, I can handle the several-days-of-higher-than-level-8 migraine, but for fuck's sake let up on my friends, and *their* friends and loved ones, dammit!)

#370 ::: Velma ::: (view all by) ::: October 23, 2008, 08:06 AM:

1) His emergency Medicaid grant request is now "pending," which means that rehab places will now consider him.

2) One of the rehab places considering taking him is considered one of the best in the country. I spoke with the woman who came to observe, and asked if he would be a lab rat; she laughed and said, "No." He seemed a bit disappointed.

3) I have finally spoken to the doctor handling his case, who is not the doctor listed on the paperwork, who is not the doctor who has given me most of my information.

4) Blood pressure is stabilized, no more bleeding in the brain (despite falling out of bed Tuesday morning, which led to another CAT scan), blood clot is breaking up, brain is shifting back to midpoint.

5) He's very verbal when he's awake, and frustrated with his temporary lack of nouns for abstract concepts. He goes back and forth between being angry with visitors who don't get it, himself, and shrugging and saying "Oh, well...". Sentences that have come up are "Teresa knows" and "Time is slippy and difficult."

6) He likes juice boxes -- less messy, and reasonable for him to hold. He continues to like to be sung to, and will sometimes sing along, either melody or harmony.

7) I'm taking a set of clothes over with me this morning, in case he gets discharged to a rehab unit today or tomorrow.

#371 ::: Fragano Ledgister ::: (view all by) ::: October 23, 2008, 08:18 AM:

Velma: This all sounds very positive. I'm glad.

#372 ::: RMKrist ::: (view all by) ::: October 23, 2008, 10:05 AM:

Velma: That is all good news. Continuing to keep you both in my thoughts.

#373 ::: Marilee ::: (view all by) ::: October 23, 2008, 02:02 PM:

Great news, Velma! I didn't have the names of people or things for six weeks, and then they just came back. Before that, it was like they were in a folder just out of reach -- I knew I knew them, I just couldn't get them into my mind and out my mouth. Very frustrating.

#374 ::: ethan ::: (view all by) ::: October 23, 2008, 02:11 PM:

Marilee, thanks for mentioning that--I've been wondering what Scraps's recollections of this time will be like once he recovers. Interesting to hear a little about yours.

#375 ::: Velma ::: (view all by) ::: October 23, 2008, 02:32 PM:

I am in the office, sneaking in a couple of moments online. When Elise walked into the room and told Soren she was here, his face lit up, and he let out a heartfelt, happy, "Wow!" Thank you, everyone who helped bring her out here. She was filling him in on politics (which I have not been following), which makes him happy.

Today, he says that he doesn't remember anything of the first week in the hospital (just as well), and that "time is adjectival," which I think is an interesting way to phrase it.

Weird but cheerful: he's eating sweets, and he ate broccoli with enthusiasm today. Do strokes often affect taste buds?

#376 ::: Ginger ::: (view all by) ::: October 23, 2008, 02:44 PM:

Velma @ 375: Yes, taste does change -- it may be the medication*, it may be the dry air in the hospital, it may be just pleasure at being able to chew and not noticing that it's broccoli..it could be a combination of things.

*Medications are well known to modify taste perceptions.

#377 ::: beth meacham ::: (view all by) ::: October 23, 2008, 03:01 PM:

Or it could just be that after the processed mystery seafood objects, a little fresh broccoli is just the thing.

#378 ::: Earl Cooley III ::: (view all by) ::: October 23, 2008, 03:15 PM:

I count myself lucky that the hospitals I (too frequently) use (the Seton Healthcare Network) have really good food. I have them to thank for turning me back on to Cheerios.

#379 ::: joann ::: (view all by) ::: October 23, 2008, 03:29 PM:

Earl, we'll have to agree to disagree here. Worst most tasteless apples I've ever had in my life, and nothing, I mean nothing, will ever reconcile me with Cream of Wheat. (I also disagree with their diet kitchen deciding that a nice juicy slice of ham was just what I needed for a low-fat diet, and that people weak as a kitten should be required either to lift multi-pound domes off their food or to unwrap utensils shrouded in plastic so tough and unyielding that I just lay back whimpering in frustration.)

As to Scraps, I'm wondering if strokes do any sort of sensory rewiring; was he a supertaster before, and now is not, or is it possible that all the breathing tubes and stuff played around with his sense of smell? (Both factors could affect one's perception of broccoli.)

#380 ::: Xopher ::: (view all by) ::: October 23, 2008, 04:30 PM:

He's eating sweets and likes to be sung to: now we're up to TWO things I could come and do! I haven't visited yet, I know, and I should.

Is he allowed to have sweets from outside? Or should I bring them for the nurses instead?

#381 ::: Velma ::: (view all by) ::: October 23, 2008, 04:41 PM:

Soren's been accepted to NYU-Rusk! That's the brain rehab place we were hoping he'd get into! (I got the call from the Rusk therapist who'd seen him a couple of days ago, then I called Elise to make sure I wasn't dreaming.)

They're finishing up the paperwork now. I'm not sure when he'll be transferred; it might be as early as tomorrow, or over the weekend.

My bosses are telling me not to hyperventilate.

Xopher, you could bring sweets for the nurses/technicians/etc., and for Dr. Philip, on 8 North, at any time.

#382 ::: Serge ::: (view all by) ::: October 23, 2008, 04:45 PM:

Velma @ 381... My bosses are telling me not to hyperventilate.

My favorite kind of boss.

#383 ::: Debra Doyle ::: (view all by) ::: October 23, 2008, 04:47 PM:

Velma@381: Soren's been accepted to NYU-Rusk! That's the brain rehab place we were hoping he'd get into!

That's very very good to hear. May there be more good things like it.

#384 ::: ethan ::: (view all by) ::: October 23, 2008, 04:49 PM:

Hooray, congratulations! (Are congratulations appropriate here? I think they are, but I'm not sure.)

#385 ::: abi ::: (view all by) ::: October 23, 2008, 04:53 PM:

(does a small dance of delight and triumph)

#386 ::: Patrick Nielsen Hayden ::: (view all by) ::: October 23, 2008, 05:00 PM:

This news is so good that I can barely believe it. The Rusk Institute of Rehabilitation Medicine has a world-class reputation.

#387 ::: beth meacham ::: (view all by) ::: October 23, 2008, 05:46 PM:

This is the best possible news. This place is one of the best in the world. Thanks to all the Powers that be.

#388 ::: miriam beetle ::: (view all by) ::: October 23, 2008, 06:23 PM:

velma,

i am so, so glad. scraps is clearly fighting so hard for his brain & body, it's only fair that some of the best people in the business should be fighting alongside.

#389 ::: Caroline ::: (view all by) ::: October 23, 2008, 06:36 PM:

Great news! I echo miriam beetle @ 388.

#390 ::: Lila ::: (view all by) ::: October 23, 2008, 07:09 PM:

Oh, Velma, how magnificent!! Happy dance from down here in Georgia, from someone who has probably never even met anyone who's met either of you. Congratulations!

#391 ::: Geri Sullivan ::: (view all by) ::: October 23, 2008, 07:26 PM:

That's fabulous!

I look forward to reading about Scraps' progress with Rusk's various therapies.


#392 ::: Lydy Nickerson ::: (view all by) ::: October 23, 2008, 07:53 PM:

That's wildly wonderful!

#393 ::: Mary Aileen ::: (view all by) ::: October 23, 2008, 08:02 PM:

That's terrific!

#394 ::: John Houghton ::: (view all by) ::: October 23, 2008, 08:21 PM:

Oh Frabjous day!!

#395 ::: elise ::: (view all by) ::: October 23, 2008, 08:39 PM:

OK, here's my report from the Scraps' Palace of Recuperation and Fun:

I went in today in the mid-late morning, joining Velma in Scraps' room. It was really, really, REALLY good to see both of them. I hung out there until, oh, not quite six p.m. I guess it was. Many, many things happened today, some of which Velma has filled people in on already, so I'll just tell a few of the others.

Scraps has a rather limited set of words in his magnetic poetry set just now, if you know what I mean. I'm told that this is fairly common after a significant brain injury, actually, and that things improve as more connections are made and vocabulary is broadened. Anyhow, the words he's definitely got in several fonts and sizes at the moment are "time," "yes," "no," and "whatever." He's also got a good supply of "Yes, but..." and a few "No, but..."s. According to one of the nurses, he was using "time" for everything: "time" means lower the bed, "time" means raise the bed, "time" means bring me some juice, and so on. However, he was also definitely making some more complicated phrases at least part of the time. He did tell Velma that time was adjectival; later on, he told me that time is an asterisk. I think he's still looking for the right word(s) there, but he's working on it.

A couple of big things today: he said my name! This was a big deal, because finding names and nouns can be particularly hard after a stroke. He also said Patrick's name, very clearly and with great effort, during a discussion where this was a very pertinent utterance. (He looked a bit triumphant when he managed that one.) And later on in the day, after someone mentioned Vicki, he came out with "PffVICKI!" (F and v are a little tricky, as he hasn't got all that much control over his lips and tongue sometimes. I think the plosive p was a way to get it started. It worked, too.)

I pushed him a little on communication, too. He'd been saying "yes" for everything, and I'd been told that it's important to ask questions that sort of fork the subject, to determine for sure how much comprehension there is. So when he waved at the light, people had been saying, "Do you want the light off?" and he'd say "yes," and they'd turn it off. I wasn't sure whether he really meant that, and it seemed worth trying to get more verbalization, so the next time he did that (the lights kept getting turned back on every time somebody came in to draw blood or change sheets or do anything), I said, "Do you want the light off?" and he said, "Yes." I said, "Do you want the light on?" and he said, just as decisively, "Yes." I said, "Ooookay, do you want the light yes-on, or do you want the light yes-off?" He made this exasperated face at me, and I said, "I know, honey, I ask all the difficult questions," and I waited.... and he carefully rounded his mouth and said "Off!" So I said, "OK, then, off it is!" and I turned the light off. He let out a huge happy sigh of relief and said, "Yes!" We did that three times over the course of the afternoon, and he said "Off" each time, after a little effort. (OK, the last time he said, "on... OFF!" which was sort of like he got the pair, but the wrong one came out, but then he corrected it emphatically. Which seemed like it counted, you know?) Anyhow, I think it was OK to try these things, and he definitely did them, and I told Velma about them before I left. So he's working on more words and being able to use them appropriately -- which will be good, because I think "yes," "no," and "time" will deserve a little vacation, given their current workload.

At one point, after he'd been saying, "Time, time, time, time!" over and over, I said, "Dude, after you get out of here, you so have to start a weblog called 'Time.'" He laughed a little at that one.

Later on, he was saying "time, time, time," again, and I said, "The only thing I am sure about is that you are NOT requesting that we play you 'Time in a Bottle.'" He rolled his eyes and said, "No," and chuckled. Then I told him a story about how when I was in high school, we had a dance marathon to raise money for something, and there had been a television crew filming us. Something kept going wrong with the lights or cameras, so they played the song over and over, I told him. "They played 'Time in a Bottle,' like, forty-seven times! And even if you liked the song when you started out, man, forty-seven times of it would cure you of that."

At this point, Scraps had been holding my hand; he squeezed it, looked up, and said in this very clear and perfectly timed comedy voice, "Forty-six?"

It was hilarious, and a perfectly Scraps joke.

He's still having trouble with memory; he needs to be reassured that he hasn't been in the hospital forever or for years (both of those were things he asked me today), and that he is making progress, and that yes, time was doing weird things, but that he's getting better. But he's clearly himself, and he's having moments -- no, more than moments, stretches of time -- of lucidity and clarity in comprehension, even if he can't get the words out that he wants. It's a pretty damned severe brain injury, but I believe that he's got a lot of things going for him, and that with good care and good work, he's going to amaze us.

He needed to know how long he had been asleep when he napped today -- finding out it was twenty minutes instead of several days was reassuring. And there's stuff about time that he keeps trying to tell us, and mostly it seems to boil down to "time is really really weird right now, and it was even weirder before." He told me, "Two days..no time," and "time went away," and later he said, "Five days... of... severed hours," after the two days, and he seemed to be indicating that now he's at least got a sense of time actually passing. He keeps saying, "Time... wow."

Anyhow, that's the report for today. I was really REALLY glad to see him, and I told him that everybody said hi. He sort of snorted -- we had just been telling him that many people sent their love and were thinking of him, and he was sort of all "oh, pshaw!" about it -- but then he raised his hand and waved it a little and said, "hi!"

So, you guys, he says hi.

#396 ::: Xopher ::: (view all by) ::: October 23, 2008, 08:48 PM:

Thanks Elise. Damn, you got me teared up at the end there!

#397 ::: Marilee ::: (view all by) ::: October 23, 2008, 08:54 PM:

Rusk! Yeah!

Elise, great report!

#398 ::: Tom Whitmore ::: (view all by) ::: October 23, 2008, 08:55 PM:

Mirabile visu!

#399 ::: Xopher ::: (view all by) ::: October 23, 2008, 09:11 PM:

Dictu, surely? But who's counting? Mirabile is the keyword here!

Go, Scraps!

#400 ::: Yatima ::: (view all by) ::: October 23, 2008, 09:25 PM:

Listen: Billy Pilgrim has come unstuck in time.

#401 ::: Tom Whitmore ::: (view all by) ::: October 23, 2008, 09:27 PM:

Xopher, I use my eyes here, not my throat or ears.

#402 ::: Arachne ::: (view all by) ::: October 23, 2008, 09:27 PM:

Hooray for Scraps heading to Rusk!

... and yes, he definitely needs to start a blog about time. And possibly taffy.

#403 ::: Debra Doyle ::: (view all by) ::: October 23, 2008, 09:36 PM:

Xopher@399: Dictu, surely?

Not necessarily. Assuming I'm recollecting my Latin correctly, if it's the experience of seeing the enpixeled words that's being referred to, rather than the experience of speaking them, then visu would be appropriate, as the ablative form of the past participle of videre.

#404 ::: Xopher ::: (view all by) ::: October 23, 2008, 09:37 PM:

Ah, I see, it's a levels-of-metaphor thing. You were speaking of seeing it written about and I was interpreting it as seeing the thing itself...and suggested it was told about rather than seen, but of course it was written about. Mirabile scriptu? Lectu? Are those even correct forms? I doubt it.

Anyway, it's a wonderful thing. Shutting off the PedanTech™ module now.

#405 ::: Mary Frances ::: (view all by) ::: October 23, 2008, 09:48 PM:

Rehab! Oh, that's wonderful.

#406 ::: beth meacham ::: (view all by) ::: October 23, 2008, 09:49 PM:

Thanks, Elise! And thanks for going to be there.

You know, I can't think of a community better suited to understanding that Scraps is feeling unstuck in time, and why, and to come up with ways of making that a little better.

And I'm still feeling gleeful that he's getting into Rusk.

#407 ::: elise ::: (view all by) ::: October 23, 2008, 09:57 PM:

I am so, so, SO very grateful to everybody who made it possible for me to be here. Some of you are in this here conversation; thanks, guys. A lot.

#408 ::: Rivka ::: (view all by) ::: October 23, 2008, 10:09 PM:

Wow, the Rusk program looks really, really good. I am so very glad that Scraps' ability to pay is not going to compromise his care.

#409 ::: Caroline ::: (view all by) ::: October 23, 2008, 10:13 PM:

"Time, time, time" makes me think of the beautiful Tom Waits song "Time."

And it's time, time, time
And it's time, time, time
And it's time, time, time that you love
And it's time, time, time.

#410 ::: Stacy ::: (view all by) ::: October 23, 2008, 10:23 PM:

I've never met Scraps, but I wish him well. I still struggle with aphasia six years after my very, very minor stroke, so I empathize with his efforts and frustration.

#411 ::: Christopher Davis ::: (view all by) ::: October 23, 2008, 10:54 PM:

Time, time, time, see what's become of me....

That's great news about Rusk.

Elise: many thanks for being there for those of us who can't, and for letting us know how things are going.

#412 ::: Mary Dell ::: (view all by) ::: October 23, 2008, 11:55 PM:

elise: Yay! That's great news! And I know I've been saying this a lot, but my sister, post-stroke, went from no words/"never talk again" to having pretty much her full vocab back with the occasional word search trouble. It's terrific that Scraps is making this progress before even getting started with rehab!

And I'm really glad you're there with them, for your sake as well as theirs.

#413 ::: Jane ::: (view all by) ::: October 23, 2008, 11:58 PM:

I face east, wave my hand, and say, "Hi" to my beloved friend.

#414 ::: ethan ::: (view all by) ::: October 24, 2008, 12:24 AM:

I'm thrilled to hear that he's making complicated jokes--I don't know much about neurological crap, but that seems significant.

I really hope that once he's more recovered, Scraps can remember enough and figure out how to express what it is that he's getting at now with time.

#415 ::: Velma ::: (view all by) ::: October 24, 2008, 12:51 AM:

Some time after Elise left, he asked me, "Is that Elise?" and "Is she coming back?" Both were very clearly enunciated; when I asked, "Do you want to talk with her?" he nodded vigorously and said, "Yes, yes, yes!"

Unabashedly romantic moment:

Tonight, for the first time in almost a week, when I asked him if he wanted music, he said, "Yes." Now, Gavin loaded his iPod with songs he knew Soren would like, songs he didn't think Soren knew, and "songs that will make [your] skin crawl." I asked Soren how he felt about Billy Squier's greatest hits, and got The Look once again; he approved of Sufjan Stevens, and when I went through the album titles, settled on Seven Swans, an album he thinks is magnificent.

He lay there, listening to the album and smiling. When the title cut came on, he started mouthing the words, and crying ... and all I could think of was the way he responds to music, the way he reacted to the Elliott Smith song the night I fell in love with him, and how this man, with his totally open responses to things that bring him joy, is the one I want to spend the rest of my life with.

#416 ::: Gavin ::: (view all by) ::: October 24, 2008, 02:10 AM:

As it happens, Seven Swans is playing in the other room right here as I read this. Moments of beauty shared thousands of miles apart.

So so so glad to hear all this good healing news.

#417 ::: Wordweaverlynn ::: (view all by) ::: October 24, 2008, 03:14 AM:

I am so glad he is doing better. I'm keeping him and all of you in my prayers.

Oliver Sacks has written often about ways that music, theater, and ritual can help a person who has brain damage. Can give them a voice, or comfort, or deep centering calm. Even when much else is gone, hearing music can still reach what is whole in a person, and the love of music can remain intact.

Musicophilia is a bit rambly, but The Man Who Mistook His Wife for a Hat has some moving stories of music's ability to bridge the damage.

#418 ::: Fragano Ledgister ::: (view all by) ::: October 24, 2008, 07:12 AM:

Light and love in the gloom.

#419 ::: Xopher ::: (view all by) ::: October 24, 2008, 12:12 PM:

Velma 415: May it be so.

#420 ::: elise ::: (view all by) ::: October 24, 2008, 08:50 PM:

All righty, here's another update from Scraps' Palace of Recuperation, Frustration, and Various Amusements. First, though, Velma gave me the go-ahead to tell you guys about two important things that she could really use help with right now.

1. Hospital bedside company for Scraps for this weekend and early next week. Velma's wrangling some paperwork that needs to be tamed before Rusk can finally admit him. (They've accepted him, but there's one more paperwork hoop to jump through with Medicaid now.) She really needs some time to deal with some of that this weekend, and I'm going to help her with that. Can some people please sign up to sit for a few hours with Scraps, so that she can whomp the paperwork? It would be especially helpful to have people this weekend and on Monday -- and if someone can sign up for Monday evening, she's got a rare and sorely-needed chance for a little musical R&R that she really wants to take.

It's not hard work; just come and hang out, talk with Scraps if he's in a talking mood, or sit and read if he's in a napping mood. You might occasionally need to press the call button for the nurse if something is beeping or needs attending to, but that's about it. People have been talking with Scraps about music, or just telling him stories, and that's been good when he's in a sociable mood. Sometimes he needs reassurance that he's making progress; he's pretty frustrated right now, understandably. (But he really is making progress, and once he gets to Rusk he'll be able to work more intensely and probably the progress will become more apparent to him.) So if you can come and be a friend to him at bedside for a bit, please could you? Bill Tipper has been coordinating shifts of visitors, and I expect he'll come post contact info here again, or you can mail me and I will pass your info along to him.

The other thing Velma gave me the go-ahead to look for was somebody who would be willing to be what I call "Coordinator of Helpfulness" for a while. (You get to say how long, but a few weeks would be good, and a couple of months would be awesome.) My friend Jenett did this for me when I was incapacitated by illness after Mike's death, and I can truly say that it makes all the difference in the world to have one person who keeps track of everybody who says, "Tell me if there's anything I can do to help," and who gets back to those people and says, "Why yes, there is: would you be able to do Velma's laundry for her next week?" Or pick up groceries, or mail cards, or whatever thing is useful. It's also handy to have someone who can say, "Hey, an anonymous person wants to know if you'd like a gift certificate for therapeutic massage at the Shiatsu Center," and who can then coordinate someone to give you a ride there and drive you home afterwards so you don't have to undo the precious stress relief. (I speak from experience here.) Anyway, if any of you might be willing to do this for a certain number of weeks (your choice of time period), please get in touch with me and I can tell you more about it.

OK, those are the two things I was empowered to ask for. Now, the update.

Scraps has a bunch of new words today, but the two most pertinent are the ones that describe how his experience is right now: "hospital" and "frustrating." He's pretty frustrated right now because he's so much more conscious of what's happened, and yet he hasn't gotten enough speech back to really communicate about it, plus he's afraid things won't get better. And on top of that, time's still being weird to him, apparently. He does ask if he's been like this for years, or if it will be forever. We reassure him that no, it was two weeks and a few days ago that it happened, and that he's making major progress and will not be like this forever, as long as he keeps working with the physical therapy people. This is apparently a pretty well-known part of recovery, and it's understandable that he'd be freaked out and frustrated and prone to moments of despair.

He's got other moments too, though; he had some moments of joy today. When he saw the blank book that Abi made, he said, "Wow!" and he admired it and the letter and the card. When I told him that he probably wouldn't have to stay in this hospital all that much longer because he has been accepted to a very good program at Rusk, who do good work getting speech and walking back after brain injury, he said, "OK," and then I said, "And Beth Meacham said it sounded like a very good place for recovery from brain injury and stroke," his eyes lit up. I said, "Beth is pretty smart," and he said, "Yes. Yes!" And then he sighed in what seemed to be relief, relaxed for the first time in a couple of hours and took a nap.

Like I said, he has more words today. He said, with appropriate hand gestures, "Past. Future." And then I went over the timing of what happened to him, but he mostly seemed to want to say that his past and his future are sort of disconnected just now. He also instructed me very clearly to re-cut his dinner: he said, "Smaller!" So I did. He ate all the miniature cooked squash, and a good half of the glazed grilled chicken, and lots of apple juice.

Claire from Rose's and the Stonewall came by (I hope I get everybody's names and affiliations right) and that was good; she talked with him for a while, and told me he looks a lot better than he did when she saw him last. I could even tell a big difference between yesterday and today: he has his color back, and he's definitely inhabiting his body and his face more, if that makes sense. (He's grumpy that his beard and hair are longer and fuzzier than usual, but I think Velma will be attending to that as soon as she can.)

Longer periods of consciousness and more complicated thought, though, mean that he's lying in a bed unable to get up and go back to his life, just thinking about things. So, like I said, it's no wonder that he's frustrated and kind of scared just now. We keep telling him that he's making big progress, but today he said, "No," pretty emphatically to that at one point. I think as soon as the Rusk thing happens, though, he'll get more evidence of what to hope for and what to work for.

Me, I am so tired I can hardly see, so I am going to crash out pretty soon, and then get up and find out what needs doing tomorrow. There's probably a bunch of stuff I've forgotten to tell you, but I'll have to add it in when I remember it.

Hang in there, hug your dear ones, get your blood pressure checked, and do contact Bill or me if you can help with visiting shifts over the next five or six days especially, OK? Thank you, you guys.

#421 ::: elise ::: (view all by) ::: October 24, 2008, 09:07 PM:

Oh, also: man, oh, man, Scraps really does have the most eloquent facial expressions I've ever seen. Especially when he's exasperated.

And the amount of meaning he can pack into the intonations of "Whatever," is quite something.

#422 ::: elise ::: (view all by) ::: October 24, 2008, 09:26 PM:

Jenett has just posted a Guide to Coordinated Helpfulness in my LJ: http://elisem.livejournal.com/1357491.html

#423 ::: beth meacham ::: (view all by) ::: October 24, 2008, 10:24 PM:

I am just thrilled to be reassuring from a distance. It is a very good place -- one of the best in the world. May the paperwork go quickly.

#424 ::: elise ::: (view all by) ::: October 24, 2008, 11:35 PM:

He's got a pretty high opinion of you. It was cool. It was also a blessed relief to see him reassured for a little while, enough to rest a bit.

#425 ::: Kip W ::: (view all by) ::: October 25, 2008, 12:42 AM:

Time for a new iPod playlist of "Time" related songs. "Time Has Come Today" by, uh, the Walker Brothers. "Time Is" by It's a Beautiful Day. "Sign of the Times" by Petula Clark. "Time of the Season" by the Zombies. "Does Anybody Really Know What Time It Is?" by Chicago. "Time Won't Let Me" by... well, you get the idea and I'm out of time. No Jim Croce, though.

It's just so good to see him climbing out of this.

#426 ::: Lee ::: (view all by) ::: October 25, 2008, 01:33 AM:

Kip, #425: Close, but no cigar -- "Time Has Come Today" is by the Chambers Brothers.

#427 ::: Linkmeister ::: (view all by) ::: October 25, 2008, 01:56 AM:

Kip,

"Time (is on my Side)," by the Stones.

"As Time Goes By," from Casablanca

#428 ::: Catelynn ::: (view all by) ::: October 25, 2008, 01:57 AM:

A website that might be helpful with coordination:

http://www.lotsahelpinghands.com

#429 ::: abi ::: (view all by) ::: October 25, 2008, 03:05 AM:

I'm so glad that he likes the book.

([*] -> It's one of a set of blank books that I bound using misprints of Pablo Defendini's Little Brother poster, and sent to various people involved in the production. Scraps did the copyediting, and I have an affinity for copyeditors.)

I was vexed with myself when it took me so long to send it that he was in hospital by the time it arrived, but I see it's better this way.

#430 ::: Tim Walters ::: (view all by) ::: October 25, 2008, 03:07 AM:

Lal Waterson & Oliver Knight, "Bath Time"
Robin Holcomb, "The Big Time"
Leonard Cohen, "Closing Time"
Charming Hostess, "Give Him A Little Time"
Skip James, "Hard Time Killing Floor Blues"
Sandy Denny, "It'll Take A Long Time"
Peter Blevad, "Meantime"
Ennio Morricone, "Once Upon A Time In The West"
Bellowhead, "Rigs Of The Time"
Nick Drake, "Time Of No Reply"
The Loud Family, "720 Times Happier Than The Unjust Man"

#431 ::: siriosa ::: (view all by) ::: October 25, 2008, 03:38 AM:

More words! Eating solid food! Facial eloquence! That's tremendous progress, from outside. From inside, I suspect he's just focusing on how far he is from where he wants to be.

Got blood pressure checked: 108/68. Regular exercise is my new religion.

Thanks, Elise, for the update. I wish I could come help out. Holding you and Velma and (of course) Scraps in the light.

#432 ::: elise ::: (view all by) ::: October 25, 2008, 09:42 AM:

OK. I just got a call from Velma. She's been there all night -- she got there a little after 6 p.m. -- and they're still waiting for a bed change (for the last two and a half hours) so Scraps isn't lying in wet cold sheets. This is why we have people there with him, because he can't tell the nurses himself.

Velma said she isn't going home until the bed gets changed. She wants to know if anybody's signed up for today at all, and if she's going to get any sleep. Last I heard, there isn't anyone signed up for any time all weekend.

Guys, we NEED PEOPLE.

I'm going to go over there as soon as I can, so she can at least get some sleep.

If you're a friend of Scraps or Velma, and you can spare even two hours, now would be the time.

If you email me at elise@lioness.net, I'll get it.

Please?

#433 ::: elise ::: (view all by) ::: October 25, 2008, 03:33 PM:

OK, I've had a bit of a break, thanks to Ellie, and I have obtained cookies to take to the nursing station, and I am heading back over there now. I will be there until Velma calls, or all night if that's what it takes.

We have somebody signed up for 1:30 tomorrow afternoon and another person signed up for part of tomorrow afternoon (uncertain time due to transit) -- you guys are heroes.

We still are looking for more people, especially on Monday afternoon when neither Velma nor I can be there.

OK, gotta run and relieve Ellie.

#434 ::: geekosaur ::: (view all by) ::: October 25, 2008, 07:03 PM:

Blood pressure: 110/70. (well, at the moment a bit higher, taking Sudafed to relieve symptoms of multiple upper respiratory infection. yug. better than headache and pressure, though, at least until/unless I have an anxiety attack which is a lot more likely when I'm on Sudafed)

Songs in my library with "time" in their name:

"Beside You In Time", Nine Inch Nails
"Child of Burning Time", Slipknot
"Darkane Times", Suidakra
"A Good Idea At The Time", John Jarvis
"Modern Times Blues", Jean-Luc Ponty
"Third Time Lucky", Basia
"Time And A Word [Live]", Yes
"Time Is Running Out", Muse

(not as much as I thought, oh well)

#435 ::: LauraJMixon ::: (view all by) ::: October 25, 2008, 07:25 PM:

Elise, the next time you see him, could you please let him know Steve and I are thinking of him with lots of love? I wish I could help out. Scraps is one of my favorite people and I can only imagine how frustrating and frightening all this must be for him.

#436 ::: elise ::: (view all by) ::: October 25, 2008, 08:08 PM:

OK, I'm back again, and Velma's at the hospital now, much to Scraps' relief. She promised me that she did indeed sleep a little while she was off-duty. I'm going to sleep tonight and then go in in the morning and relieve her.

We do have people for tomorrow afternoon (YAY!!! You are heroes of the revolution!) and for Monday night now (YAY!! More heroes! Comrade, we are going to be needing more medals) so far.

We could really use people for Monday daytime, particularly in the afternoon, as neither Velma nor I will be available. (Late morning would be OK too, though I play to be available for the early and mid-morning, but afternoon is the remaining crunch time.)

If we can manage to get the relevant paperwork taken care of Monday, then the path is clear for him to go to Rusk. (Hey, he did even look at the brochure a little bit today!)

Now for the Scraps news: They did a chest X-ray today to make sure he didn't have pneumonia or anything, because he had been running a bit of a temperature. When I got there, he had just gotten back from it, and a little while later he said to me, "X-ray?" and I said, "Yes, you had a chest X-ray because..." and explained stuff. He also at some point today said to me, "Time... banana." I said, "Time flies like a banana?" and he laughed and said "Yes!" So I said, "... and fruit flies like an arrow?" and he made a snorty laugh and nodded.

Also, today we may have created a monster of empowerment, because I showed him how to use the bed buttons to raise and lower it. He still mostly asks us to do it (usually by saying, "Time, time, time!" and then waving an arm -- "time" is still the word in the most fonts and sizes in his magnetic poetry kit), but he did do it himself three times today. He's also gotten very deft at untangling the IV line and making sure it's not stuck under him when he changes position. Oh, and I held the cup of applesauce for him, but he ate the entire thing himself with the spoon in his left hand, expertly chasing around the last bits of applesauce in the bottom, and getting them! He did not, however, deem dinner to be really food, so mostly he had applesauce, apple juice, grape juice, and water.

When I left, he and Velma were communicating about what music he was going to listen to.

Oh, and he did come out with a very exasperated shout of "Shit!" when I misunderstood whether he wanted the bed up or down one time.

He looks a lot better today than yesterday; his color is good, and he's very animated, and he is very Scraps. Although he still isn't moving his right arm or leg, both sides of his face are working in perfect harmony and his expressions are, as I said before, most eloquent.

His speech is improving, too. He said several new-to-my-hearing words today, too many to remember, in fact, and he's stringing three and four words together now. The other thing he did was utter what was clearly a complex sentence with subordinate clauses, even if the words in it were word salad. Oh, and he asked Velma if he was going to be "average" -- at least we think that's what he was asking.

The most amusing moment of the day was when Velma asked him, just before I left, whether he was asking us to leave the bedrail down because he was planning on making a break for it. He answered with the most determined-yet-sheepish "yes" I have ever heard, and then he laughed! I told him, "Dude, you are so busted!", and put the bedrail up and he laughed again. Last I saw, he and Velma were making sweet eyes at each other, and discussing music choices.

So that's the haps. Catch us tomorrow for another thrilling episode of How Scraps Got His Parlando Back, or whatever the title of this adventure ought to be.

#437 ::: Finny ::: (view all by) ::: October 25, 2008, 08:15 PM:

Hey. I'm Finny, hopping over from Elise's LJ (where I"m finnyb), just to add good wishes. I don't really know any of you, though I'm an avid sci-fi fan and writer, but Elise posted asking for help getting to NYC on her LJ, I helped a bit (shinies!), and I only wish I could help more. Don't think there's anything I can do from Calgary, but if there is, feel free to let me know.

#438 ::: beth meacham ::: (view all by) ::: October 25, 2008, 08:24 PM:

Hmph. Scraps will never be average. Obviously his intelligence is unimpaired. The only question is fine and gross motor control, plus getting time to settle down to a straight line again.

#439 ::: Harriet Culver ::: (view all by) ::: October 25, 2008, 10:11 PM:

Here's a possibility: I was just reading over the "About Scraps" page at Parlando, when what to my wondering eye should appear but the following tantalizing words, "Meaning may sometimes be recovered with a vigorous application of moist towelettes."

Would it help if potential visitors were to bring along canisters of Wet Ones?

#440 ::: David Goldfarb ::: (view all by) ::: October 26, 2008, 01:58 AM:

Pink Floyd, "Time" (from _Dark Side of the Moon_)
Enya, "Only Time"

#441 ::: elise ::: (view all by) ::: October 26, 2008, 07:53 AM:

OK, I'm getting ready to go in again, so Velma can get some sleep. Looks like I'm on-duty until 1:30 this afternoon, at which point other folks come in (yay!) and I go help Velma prep what we hope is that last bit of paperwork. Then there's the long stretch from 5 p.m. tonight (or whenever our afternoon people need to leave) until Avram can come in on Monday afternoon (yay, Avram!)... figure about a nineteen hour stretch that Velma and I will have to split between us, I guess. No, wait, I have to take morning, because that's when Velma files the paperwork we work on this afternoon. OK. So it looks like I do 9-1:30, 5-whenever tonight, hand off to Velma for the night shift, and then come in in the morning as early as I can manage so that maybe Velma gets a little sleep before dealing with the last of the Medicaid stuff and then going to work.

If somebody turns out to be available for some early morning stuff Monday it would mean Velma coud go home earlier and maybe get a nap.

Pleasepleaseplease let the paperwork stuff go through smoothly.....

#442 ::: elise ::: (view all by) ::: October 26, 2008, 03:43 PM:

Back from the hospital for a bit, and about to help Velma print out paperwork.

Hey, a piece of good news -- Harriet just called me and asked me to bring a fivethirtyeight.com printout of red and blue states and relevant stats. Apparently Scraps is asking her and Xopher about Pennsylvania and New Hampshire!

Also, he can definitely tell time today, because he knows exactly how long it is until the next dose of Percocet. He can also enunciate "Percocet" quite well. The other thing he did today was say, "One hour, two hours, three hours, four hours, five hours, six hours, seven hours, eight hours, nine hours, ten hours!" And then he sort of waved his hand, which might have meant "they fly by" or might be "they all blur together." I am not sure about which. I hope he'll tell me which it was when he reads this later.

Speaking of reading this, are you guys still there? I feel like I'm talking to an empty room just now; wave back if you can, OK?

#443 ::: elise ::: (view all by) ::: October 26, 2008, 03:51 PM:

Oh, and Bill Tipper just said (and I hope he doesn't mind me quoting):

Maybe we should have a swing-state calling party from Scraps's bedside. "Hi, is this Alice Jones of Columbus, Ohio? I'm in my friend's hospital room, and the first thing he asked when he regained the use of his speech was if you had adequate directions to your local polling place."

Hee! I am gonna tell Scraps that when I get back there.

#444 ::: Andrew Willett ::: (view all by) ::: October 26, 2008, 03:53 PM:

elise@443: Maybe we should have a swing-state calling party from Scraps's bedside.

"Don't make us put him on the phone."

#445 ::: abi ::: (view all by) ::: October 26, 2008, 03:56 PM:

Elise, my dear, we are reading avidly and eagerly. And we're grateful that you can be there as our proxy. Thank you ever so much.

#446 ::: Arachne ::: (view all by) ::: October 26, 2008, 05:41 PM:

*waves back*

I'm subscribed to the comments here and I look for every update. I don't know Scraps but I'm worried for him anyways, and also relieved that things currently are going well (and they are actually).

#447 ::: Lydy Nickerson ::: (view all by) ::: October 26, 2008, 05:45 PM:

I'm here, appreciating all your hard work. As I'm in Minneapolis, my volunteer opportunities are limited. I'd always wondered how "normal" people managed situations like this. Scraps and Velma turned to fandom and some close friends. I think that normal people must manage somewhat less well, although most of them have churches that will help coordinate things the way Elise is doing. I never really realized before how commplicated it was to provide quality assistance.

#448 ::: Mary Dell ::: (view all by) ::: October 26, 2008, 06:04 PM:

elise @#444: I'm here! Hugs to all of you. Are you still ok for cab fare and so forth?

#449 ::: Serge ::: (view all by) ::: October 26, 2008, 06:09 PM:

elise @ 442... wave back if you can, OK?

Reading and waving back, elise.

#450 ::: Melissa Mead ::: (view all by) ::: October 26, 2008, 06:24 PM:

:waves back:

I haven't been posting because I don't know Scraps, but it's great to hear about his progress, and the way everyone's pulling together for him is wonderful.

:Sending good thoughts for all involved:

#451 ::: Mary Frances ::: (view all by) ::: October 26, 2008, 07:15 PM:

I'm reading, praying, and trying to jump in when I think I can say anything even remotely helpful long distance. Bless you, Elise, for being there, for organizing all this--I've been in Velma's place, more or less, and I still remember each and every instance of people helping, from the friend who brought me that bagel and coffee at 6am to the cousins who visited on not-really-visiting days to . . . well, you get the idea.

I've never met Scraps or Velma--or you, for that matter--so I don't want to overdo the comments. But I'm still here.

#452 ::: beth meacham ::: (view all by) ::: October 26, 2008, 07:23 PM:

I wasn't here for a while today, but now I am. :waves: I am keeping close track of what's going on. I wish I could be there to help in this hard time.

Tell Scraps about the daily tracking poll that Kos is paying for. Give him the numbers. It's very encouraging.

#453 ::: JESR ::: (view all by) ::: October 26, 2008, 07:43 PM:

Still here, still concerned. Currently flummoxed by the longest stretch of dry weather since last spring, blinking at turquoise sky and brilliant leaves inappropriate to a Puget Sound October.

#454 ::: elise ::: (view all by) ::: October 26, 2008, 07:56 PM:

Hey, other people are doing lots of stuff -- like helping me get here! I just happened to ask for help to get here for this particular 8-day stretch, because I know from experience that the real hard part of any catastrophe starts about two weeks in, after the immediate stuff is dealt with and when the transfer is being made from "acute stuff" to "long haul stuff." I was nervous about asking friends for help to get here, but wow, did people ever come through!

Everybody who's visiting, and Bill T. who is keeping the schedule for visiting, and everybody who is making sure Velma eats -- you guys are heroes, and everybody who donated is a hero, and, well, I am on the edge of getting all maudlin here. What I'm doing is no huge hairy deal; it's actually sort of on the order of paying back a little of the help everybody gave me two years ago, especially Jo Walton and Patrick and Teresa and my friend Jenett and M'ris and a whole bunch of people. I'm really grateful to be able to help. Wish I could do a ton more, because this long haul is really going to be a lot of work. Worth it, of course, but work.

Now, my little update for the day: This afternoon we went over the paperwork to be turned in tomorrow, and also I fed Velma some avocado and a bunch of swiss-basil-tomato tart, via the old "Oh, dear, I have put this in the microwave and it's huge! Surely you'll help with a little bit of it, yes?" technique. (Velma, I grin at you if you are reading this.) Then we fielded the aforementioned phone request for election statistics, printed out some useful things, and went over to the hospital.

When we got there, it was all like "WOO HOO PARTY IN SCRAPS' ROOM WOO HOO PARTAY !!!1!ELEVENTYONE!!!" Seriously, we came in to a wave of laughter, and in the middle of it was Scraps with his eyes all alight and a circle of friends around. When I left, he was firmly reaching for and grabbing the sheaf of fivethirtyeight.com printouts, so I expect they all went on from there. Don't tire him out too much, guys -- but it sure looked like you were brightening his day.

I'm going to do some laundry and get some sleep and go over again in the morning. We've got people to cover everything from 1 p.m. until late evening when Velma gets there again -- thank you guys again, and as I said, you are wonderful for helping. We've also got somebody for daytime Tuesday -- one of Scraps' and Velma's piano bar friends -- and for a good chunk of Wednesday afternoon and evening. I'm planning to be there around the edges of all these times as needed, and to give people breaks, and do some errands for Velma.

Keep your fingers crossed for smooth paperwork sailing and speedy transfer to Rusk.

OK, I better go have supper and get on with this laundry thing, unless I want to be wearing things that could stand up by themselves.

#455 ::: beth meacham ::: (view all by) ::: October 26, 2008, 08:07 PM:

That's very encouraging! Also, you know, election stuff is very time-bound.

Do laundry, eat, sleep. My fingers are crossed on the paperwork for transfer. I hope I can visit Scraps at Rusk when I'm in town next month.

#456 ::: Caroline ::: (view all by) ::: October 26, 2008, 08:13 PM:

Oh heck yeah I'm reading. I've got this comment thread's RSS feed reporting directly to Mail. Like Arachne, I don't know Scraps personally, but I still care.

The WOO HOO PARTAY sounds great -- and I know fivethirtyeight lifts my spirits every time I look at it; I hope it has the same effect on Scraps.

You should so have a swing-state calling party!

#457 ::: elise ::: (view all by) ::: October 26, 2008, 08:27 PM:

Mary Dell: I'm good so far. Have gone through about half the fundage, and I'm halfway through the visit. Have used a bunch of it to buy cookies for the nursing staff, which resulted in their putting up a sign to make sure people call him by his current name. (Yay, nursing staff!) Have also bought food (made a serendipitous Fairway run after discovering the magic IKEA free bus) including the aforementioned sneaky tart, and a few things in the cafeteria or on the way to/from, before I managed the Fairway run and had carryable backup food. Probably going to have to restock on beverages soon; hospitals are such thirsty places. Oh, and huge thank-yous to both people who enabled me with partially-full metro cards, because I was able to use one of them to enable another volunteer.

#458 ::: Vicki ::: (view all by) ::: October 26, 2008, 08:48 PM:

Yes, Elise, I'm reading. I forgot to mention that in between copy-and-paste reposting, but we're here, and glad you are physically here.

#459 ::: Lila ::: (view all by) ::: October 26, 2008, 09:32 PM:

keeping up eagerly; please continue.

Obama HAS to win now; think how much it will speed Scraps' recovery!

#460 ::: siriosa ::: (view all by) ::: October 26, 2008, 09:35 PM:

elise: Speaking of reading this, are you guys still there? I feel like I'm talking to an empty room just now; wave back if you can, OK?

I'm watching, and reading, and sending light. I've been in a similar hard place to Velma's, and the person who elised for me will always be my hero.

Partay on.

#461 ::: Clifton Royston ::: (view all by) ::: October 26, 2008, 09:46 PM:

Reading and hanging on your updates, elise and Velma. I don't know Scraps or Velma except from here, but I'm sending both my love and good wishes.

#462 ::: Lizzy L ::: (view all by) ::: October 26, 2008, 09:55 PM:

*waves to elise* Hi from California! Thinking of you, and Scraps, and Velma, and wishing I could bring you all stuff to eat. (It's what I was taught to do in a crisis, any crisis -- bring food.)

Clean clothes are good, too.

#463 ::: Xopher ::: (view all by) ::: October 26, 2008, 10:11 PM:

Scraps keeps getting new words; he's very good at expressing himself with the words he has, considering. For example, he kept pointing at various states on the 538 map and saying "Time out!" We figure this meant "OMG THAT state is going blue?!?!?" It did seem to brighten him up.

He does appear to understand everything you say to him, though at one point when I said this he said "no." Trouble is, 'no' can mean 'yes' and vice versa. He definitely seems to get it and react appropriately.

He was astonished and delighted to learn that McCain appeared to have closed up shop in New Hampshire. (This was before the 538 printout arrived.)

#464 ::: elise ::: (view all by) ::: October 26, 2008, 10:43 PM:

Clean clothes would indeed be good. However, my current state of emotion on that subject is, as Sarah Monette's cat would say, M'WOE!!"

#465 ::: Marilee ::: (view all by) ::: October 26, 2008, 11:02 PM:

You know I'm reading because I'm emailing!

More good news today, the political interest is very good.

#466 ::: geekosaur ::: (view all by) ::: October 26, 2008, 11:08 PM:

Here, reading, contributing when possible, sending light and prayers ("blessed is He who heals the sick").

#467 ::: Christopher ::: (view all by) ::: October 26, 2008, 11:09 PM:

elise @442,

I would guess that there are many here, like myself, that haven't posted yet but still eagerly await any updates. I am Scraps's brother-in-law. After the news of his stroke first hit, this quickly became the place his sister Kristen and I clung to for news and updates. When friends, co-workers and family ask for the latest info, this is the source I find myself quoting.

I would like to thank all here who have stepped in to contribute to this thread with support or encouragement as well as to those who have provided hands-on assistance to Scraps and Velma.

The hardest part of this ordeal for me as a family member on the other coast has been the waiting part, especially waiting to hear of good news regarding Scraps's progress, which was not certain to happen from the earliest.

It has been a great comfort to have this one place to access from anywhere the internet is available, simple by doing a Google search for "making light", and to see how many friends have made it here during Scraps's time of need. We should all be so lucky in that regard.

Thank you again for the updates, and please keep them coming.

#468 ::: Christopher Davis ::: (view all by) ::: October 26, 2008, 11:13 PM:

elise: still here, still reading, still sending best wishes to all y'all: Scraps, Velma, you, and everyone else who can be there physically for those of us who can't.

Thank you for every update, every little bit of help, everything.

#469 ::: Ellen Asher ::: (view all by) ::: October 26, 2008, 11:32 PM:

Elise: I don't know Scraps and Velma personally -- and don't comment much anyway -- so I haven't said much here, but I'm reading every time I go on line and sending hopes and prayers for full recovery. Thanks so much for keeping us all up to date.

#470 ::: Adrian ::: (view all by) ::: October 27, 2008, 12:51 AM:

Thank you for being there and helping. If you have a calling party to swing state voters from Scraps' room, would it be appropriate to talk about health insurance?

#471 ::: Marilee ::: (view all by) ::: October 27, 2008, 12:55 AM:

Donation Update, you wonderful people!

#472 ::: Nina A ::: (view all by) ::: October 27, 2008, 01:27 AM:

Good wishes and thoughts from Arizona as well.
/relurking.

#473 ::: ethan ::: (view all by) ::: October 27, 2008, 01:38 AM:

elise, I refresh this thread about every fifteen minutes every day at work, check it again as soon as I get home, and then as often as possible while home. If the updates stopped I don't know what I'd do. Thank you.

#474 ::: Velma ::: (view all by) ::: October 27, 2008, 07:55 AM:

When I left him last night, about midnight, he was cheerfully tired out. He did comment approvingly on Xopher's hairstyle, and was pleased by the political discussion (I get my news from him, so am not the person to explain details to him).

He looked at old photos with us, and filled us in on names and ages, making really sweet "awwww!" sounds at the photos of Kris and Chris, and his family in Seattle. He did opt for music, before he went to sleep: XTC's Black Sea and Skylarking.

#475 ::: elise ::: (view all by) ::: October 27, 2008, 08:09 AM:

Am on my way in now. Running about twenty minutes behind schedule, which, given last night's meshugass, isn't really bad at all.

#476 ::: Ken MacLeod ::: (view all by) ::: October 27, 2008, 08:19 AM:

Waves back, from the other side of the Atlantic.

#477 ::: Lin D ::: (view all by) ::: October 27, 2008, 10:39 AM:

*waving*
Elise, you're not posting into a vacuum. I check in here every so often, and am avidly interested in Scraps' progress and how well you and Velma are doing. Other than my donation, not much physically I can contribute from the left coast. Energy and good wishes always.

#478 ::: Andrew Willett ::: (view all by) ::: October 27, 2008, 11:30 AM:

Just got off the phone with Elise, and here's the latest: Scraps had a session of occupational therapy this morning which left him feeling frustrated and physically wiped out. When it was over, the therapist left, and Elise and Scraps had a brief conversation about her visitor's pass, which had a typo on it. (Copy editors take their joy from odd things.) The therapist returned to the room just in time to see Scraps turning over the pass to examine the other side, and got a funny look on her face.

"Can you read that to me?" she asked.

"New York Methodist Hospital," he said.

The therapist started scribbling notes into Scraps's chart. Apparently this was a Big Deal.

"Would you like a newspaper?" she asked. "Something else you can read from?"

"God, yes," he said.

Elise was making haste for the Barnes & Noble down the block as we spoke. There are copies of Newsday and the Times in his immediate future, and smiles all 'round.

#479 ::: Mary Frances ::: (view all by) ::: October 27, 2008, 11:42 AM:

Reading is a HUGE deal--not just because it's, well, y'know, reading, but because it implies all sorts of good things about possible language impairment.

That's spectacular.

#480 ::: Rikibeth ::: (view all by) ::: October 27, 2008, 11:54 AM:

Oh, that's WONDERFUL news about the reading!

I know that if I were in the hospital, even if it weren't for a stroke, I'd find it MUCH harder if I weren't able to read. I had a bout of iritis last winter, and spent a great deal of time with dilating drops in my eyes, and I was setting my browser to an enormous font and re-reading my Little House books, because those had fairly large print, and it was easier to try to make out what print I could than to try to adjust to days without reading.

It's wonderful to hear about the progress.

#481 ::: beth meacham ::: (view all by) ::: October 27, 2008, 11:58 AM:

But guys, he's been able to read all along -- using the word board, and laughing at the jokes, told us that. Reading Teresa's sign.

The hospital staff haven't been paying attention.

#482 ::: Lizzy L ::: (view all by) ::: October 27, 2008, 11:58 AM:

Reading!!! Yes!!! Andrew, that's great. Thank you for that news. As I understand it, reading skills relate to speech, so recovery of reading suggests recovery of speech. Good news indeed.

#483 ::: Andrew Willett ::: (view all by) ::: October 27, 2008, 12:15 PM:

Good point, Beth -- I don't know whether it was that he was reading out loud (translating written language into spoken language) or just that he was doing it in front of a staff member that was the big deal. Anything that excites the staff is fine by me.

#484 ::: Harriet ::: (view all by) ::: October 27, 2008, 12:18 PM:

To quote one of the things Scraps said yesterday, "WOW!"

(Yesterday, he was checking out new blue states on the fivethirtyeight.com maps. And yes, "we" knew he could read, but now that THEY know it - WORD!))

#485 ::: Lila ::: (view all by) ::: October 27, 2008, 12:21 PM:

Cut the OT some slack, y'all, that may have been the first time she'd worked with him!

#486 ::: Xopher ::: (view all by) ::: October 27, 2008, 12:29 PM:

Well, on the off chance that it wasn't that he was reading aloud, someone should tell the OT that he's been reading the cards and getting the written jokes and looking at the 538 numbers (not just the map) and understanding what they mean.

Also, speech and writing are pretty different. I wonder if he might be able to write down words that he can't say yet. It's even possible that he can write things down and read them aloud, when he can't just say them right off. The brain is a marvelous and wonderful thing, and lots of stuff that you wouldn't think could be separate is separate.

For example, some native bilinguals with severe traumatic brain injury can still interpret between their two languages, even when they're having an attack of total aphasia and can neither speak for themselves nor understand a word said to them, including what they've interpreted. What really bakes my noodle, though, is that some have aphasia of only one language, and if you speak to them in that language, they can't understand, but they can interpret into the other language, and after they say it aloud in the working language, THEN they understand.

So you never know.

All that said, however, I'm absolutely kicking myself that I didn't ask him if he wanted to read something. That's something I, of all people, should have thought of, and didn't. Sorry, Scraps.

#487 ::: beth meacham ::: (view all by) ::: October 27, 2008, 01:12 PM:

Lila @485 -- not ragging on the OT, at all. But there should have been a note in his chart that he could read. It's kind of an important point when you're dealing with brain injury.

#488 ::: Tom Whitmore ::: (view all by) ::: October 27, 2008, 01:22 PM:

An odd thought -- nowadays many children manage sign language before they actually have words. Given the impaired movement, this might not work well, but I wonder if it might get him some extra communication faster.

#489 ::: Lucy Huntzinger ::: (view all by) ::: October 27, 2008, 01:33 PM:

I will now commence using "that bakes my noodle" when I am mad.

The updates are infinitely welcome.

#490 ::: Mary Dell ::: (view all by) ::: October 27, 2008, 01:36 PM:

Xopher's hairstyle? Xopher, for some reason I've always pictured you as being bald. Maybe a picture I saw? I did a google image search and it appears that you do indeed have hair; also a beard, a little hat, and a very fancy suit.

Apologies for having such a wrong mental image of you; thank goodness I've now corrected it!

#491 ::: Velma ::: (view all by) ::: October 27, 2008, 01:39 PM:

Xopher, don't kick yourself. I didn't think of newspapers, either. I should bring my laptop tomorrow morning, and see if we can get a wireless connection somewhere. (This is why we post here, to get more minds working.)

One glitch is that he's very right-handed, and that's the side most affected by the stroke, so writing may be hard. I need to find out whether Rusk has computers accessible to patients. (I feel sure that they do.)

Today, I am jumping through more hoops for Medicaid and Rusk, and trying really hard not to lose my temper, as there are forms that the doctors were sent last week, which may or may not have been filled out, but which have evidently not been received by the powers-that-be at Rusk. I am also in my office, trying to make my bosses' lives easier, and soothing myself by doing work here.

Oh, today, Soren very clearly said, "No more bendy straws!" He wants cups, or the pitcher of ice water, to drink from; he also wants his older, larger glasses, and more things to do, because it's "BOOOOOOORING!" in the hospital.

#492 ::: Caroline ::: (view all by) ::: October 27, 2008, 01:59 PM:

Xopher @ 486: Also, speech and writing are pretty different. I wonder if he might be able to write down words that he can't say yet. It's even possible that he can write things down and read them aloud, when he can't just say them right off. The brain is a marvelous and wonderful thing, and lots of stuff that you wouldn't think could be separate is separate.

Yes, this. The professor I had who'd had a stroke was frequently able to write words on the whiteboard when he couldn't get them out verbally.

#493 ::: Harriet ::: (view all by) ::: October 27, 2008, 02:01 PM:

Velma @491

ISTR seeing a complaint somewhere on the innertubes bemoaning the fact that NY Methodist doesn't offer wifi. Worth checking out tho.

Also, what about "sippy cups" to replace the bendy straws? might Scraps be willing to try one, as long as it was free of Smurfs or Barney or similar? (can one GET them free of such imagery?)

#494 ::: Harriet ::: (view all by) ::: October 27, 2008, 02:15 PM:

Aha! I'll take some of those plastic lids for styrofoam hotcups with me when I go over this afternoon and see how they're received.

#495 ::: Debbie ::: (view all by) ::: October 27, 2008, 02:15 PM:

Yay! for progress!!

Re: sippy cups: Tupperware™ makes a no-frills sippy cup in a couple of different sizes, but I'm not sure whether they have them with handles. You'll need to see whether he needs those or not. OT may be able to help you out there.

Yeah, strokes are weird. I've seen people who could say and spell things, but couldn't recognize a corresponding picture. And every imaginable variation.

#496 ::: Xopher ::: (view all by) ::: October 27, 2008, 02:19 PM:

Famous case: guy was being tested for noun-memory for common objects. Did fine until he got a picture of a comb. Then he stopped.

"It's what you use to comb yourself," he finally said, "but I can't think what it's called."

#497 ::: Xopher ::: (view all by) ::: October 27, 2008, 02:30 PM:

Re the bendy straws, I got the strong impression he'd rather drink out of a regular cup, even with spilling, than use the bendy straws. He was slurping soup out of a bowl the same way (spilling some of it the same way), and a) declined my offer to hold the bowl so he could use a spoon, and b) gave up on the soup when it was put into an "easier" container.

I could be wrong, but I sense he would not want to use a sippy cup either. "This is something the Captain needs to do for himself" may be the operative principle here. He seemed (in the few hours I spent with him) to want to try to do things as normally as possible, and even partial success was a victory; whereas complete success with a "crutch" felt like a failure.

Full Disclosure: I am not a telepath, and could be thoroughly, totally, utterly wrong about all the above.

And being bored is a VERY good sign, IME.

#498 ::: Harriet ::: (view all by) ::: October 27, 2008, 02:39 PM:

I suspect you're right about the "crutchness" of a sippy cup, Xopher. I wonder how something like the "Fan Hydration Device" from Denvention (I've still got mine at home) would be received -- or one of those commuter mugs. Stuff for grups.

#499 ::: Velma ::: (view all by) ::: October 27, 2008, 03:41 PM:

Cross your fingers, folks. I just got a call from the therapist from Rusk who saw him last week, and she thinks I may have done all the hoop-jumping I will need to do for admissions. She says he's the sort of patient they'd like to have, but did not cackle like a mad scientist when she said so, much to my disappointment.

Could be tomorrow.

#500 ::: Tom Whitmore ::: (view all by) ::: October 27, 2008, 03:51 PM:

I doubt her bosses would be happy if you taught her to cackle properly, Velma. More's the pity.

Fingers crossed! Makes typing difficult, though.

#501 ::: beth meacham ::: (view all by) ::: October 27, 2008, 04:09 PM:

Fingers toes eyes crossed.

I expect that most patients' families would not be happy to hear that their loved one is to be a lab rat. We are an unusual bunch in that regard.

#502 ::: abi ::: (view all by) ::: October 27, 2008, 04:31 PM:

B-b-but lab rats have the most fun*! And Scraps is so neat that any sane mad scientist would want to study him.

----
* and get to try to take over the world

#503 ::: LauraJMixon ::: (view all by) ::: October 27, 2008, 06:19 PM:

I'm still here, too, and checking in often. Sounds like many good bits of news -- thanks to Velma and Elise for keeping us apprised! I wish I could be there to help.

#504 ::: Marilee ::: (view all by) ::: October 27, 2008, 06:26 PM:

I had to learn to read again after I had my stroke and I'm much slower at it now. Then again, I could talk when I woke up from the coma, I just didn't have nouns. When I have dysphasia, I can usually still type, but if my typing gets weird, it's time for a nap.

Great news that the hurdles may be over for Rusk! And we'll be expecting Soren online with us election night!

#505 ::: Magenta Griffith ::: (view all by) ::: October 27, 2008, 07:44 PM:

Putting energy out to the aether that the transfer to Rusk goes smoothly and quickly.

Iatrogenic infections and boredom are the two biggest dangers in hospitals, IMHO.

#506 ::: elise ::: (view all by) ::: October 28, 2008, 12:37 AM:

Hi, guys. Here's my Scraps report for part of the day. And no, you should not get grumpy at the physical therapist, really. She acquired clue when it was there to be had.

The physical therapy thing went like this: I wound up in the PT room with him, because they said I could go in and keep him company. He was in a foul mood at first, having refused to go and then grudgingly gone. They started with exercises to get him to start trying to move his right arm; the exercise I recall was using his left hand to push his right hand down on some brightly-colored silly putty stuff. He did a little of that, and then stopped. He was sitting at a desk, and the next thing they did was strapped his right hand (the non-moving one) to a little wheeled device.

The PT said, "Do you skateboard?" and Scraps gave her The Look. She then tried, "Do you roller-skate?" This earned her another dose of The Look.

I said, "Oh, look, Scraps, you have a planchette!" He rolled his eyes at me a little, but at least I didn't get The Look.

She asked him to try to move his hand, and then to guide it with the other if necessary. He refused, and refused to do any other PT exercises.

I took a chance and said, "You want to be able to walk again, right?"

He said, "Yes."

"Well, then, you'd better start doing these exercises."

And he did.

He got grumpy and stopped again, but then started up in a few minutes. His moods are all over the place, and move quickly, which I understand can be part of the whole stroke thing. He goes from saying "Please, please, please, death, please!" to willing-to-try in about a hundred and twenty seconds sometimes.

Eventually, after he did a whole bunch of leg exercises, he was sitting there resting, and I was talking quietly with him while the PT folks attended to someone else for a couple of minutes. I handed him my visitor's pass and said, "They really do need a copyeditor here," referring to a typo most of his visitors have noted. He took the paper, read it, and turned it deftly over to read the other side. This is when the main PT (of the two who had been working with him that session) looked over and saw him handling the paper so easily and apparently reading it. She came over and I said to her, "He read me a word from it before."

She said, "Soren, can you read that to me?"

He gave her an eye-rolling version of The Look.

She said, "Please read that out loud to me."

He brought the paper up and read, slowly but clearly, "New York.. Methodist... Ho-ospi-tal... ffffffVisitor's......Pass."

I said to the PT, "He's a professional copyeditor."

She said, "Well! Of course you can read, then. No wonder you looked at me like I was an idiot!"

That got a laugh out of Soren, and one out of her. So don't be hard on her. She then said to him, "Would you like a newspaper?"

Soren burst out with, "Oh, God, yes!" The PT said, "We'd like you to read out loud to your fiance. That will be very good for you." And shortly thereafter I was sent out by Velma to procure Newsday and the NYT.

(I did wonder later whether the PT folks are used to not working with reading because some of the patients are not literate, and because they seem mostly working with large and small limb and body movements in that particular program. For us, reading is a basic thing we'd check out early, but for many people, it's probably not.)

Back in the room, Soren had a visit from a speech therapist who said he had seen him on his first day or two there, and congratulated him on a lot of progress. They worked a little bit on having Soren find names for common objects. It was kind of interesting to see that here is a place his reading actually impedes his therapy a little: the speech therapist held up a marking pen and said, "What is this?"

Scraps promptly said, reading it, "Ssssharp-ie!"

The speech therapist took a pen from his pocket, and asked, "What is this?"

Scraps took it from his hand, turned it until he could read the writing on it, and did so.

However, he can't find the word "pen."

The speech therapist then picked up the New York Times, and said, "What is this?"

Scraps looked mildly startled and immediately said, "Everything!"

The speech therapist laughed (a little bit and in a nice way) and said, "Well, yes, it does have everything in it, but I was asking for the class of object."

Scraps can't locate the word "newspaper" yet.

Still, it was a day of much work and some big progress.

In other news, this evening I accompanied Velma to a concert that she and Scraps had planned to attend. It was a very good show, and I think there was some much-needed unwinding there. Afterwards we headed back to the hospital, sweet-talked our way past the security guard, and went up to Scraps' room. I said good night quickly and took off, along with the other two stalwart visitors who had stayed until we arrived, and Velma stayed with him for a while longer.

And then I came home to Patrick and Teresa's place, and now I have written you this.

Tomorrow morning I plan to go along with Patrick to have a brief political update chat with Scraps before Patrick goes in to work. Then I will do errands for Velma.

And that's the haps.

#507 ::: beth meacham ::: (view all by) ::: October 28, 2008, 12:50 AM:

Thanks, Elise, that's an excellent report! Very cheering progress. And I'm glad you and Velma had some R&R.

#508 ::: elise ::: (view all by) ::: October 28, 2008, 01:03 AM:

We have a Cunning Plan for dealing with the paperwork hassles tomorrow. We'll report back on it if it works. It involves a Seekrit Weapon.

#509 ::: miriam beetle ::: (view all by) ::: October 28, 2008, 01:07 AM:

thanks so much for keeping us updated, elise! i read the thread several times a day.

and thanks for, you know, everything else, every day.

#510 ::: David Goldfarb ::: (view all by) ::: October 28, 2008, 05:17 AM:

Here's another wave back -- I'm reading all the comments and updates. (As indeed I read everything posted to ML that is not either disemvowelled or on the "Salwar Kameez" thread. And I read quite a bit of the disemvowelled stuff, at that.)

Elise, it sounds like you are doing wonderful things. Please continue to keep us informed.

#511 ::: Mez ::: (view all by) ::: October 28, 2008, 07:39 AM:

G'day Over There! *waves across Pacific Ocean, North American continent* Glad to read some good happenings. This here code wiress is knocking me about, but I'm trying to keep an eye† on some things, including Scraps' situation and Elise's efforts.

Humble thanks to geekosaur for your thoughts, and to Marilee (others??) for hunting down something more solid.

†whenever there's one working – yet another story.

#512 ::: Serge ::: (view all by) ::: October 28, 2008, 07:47 AM:

elise @ 508... We have a Cunning Plan

I hope it doesn't involve Nurse Baldrick or Doctor Blackadder.
Best wishes.

#513 ::: Michael I ::: (view all by) ::: October 28, 2008, 01:36 PM:

Serge@512

Don't worry. I'm sure it just involves Jayne.

#514 ::: Vicki ::: (view all by) ::: October 28, 2008, 04:05 PM:

Quick report: I was at the hospital this morning. Scraps is still not happy, and still having trouble finding words, but he's getting a lot of use out of the few he has, with some patience and goodwill from the people he's talking to.

It took us a while to sort out that when he kept saying "four hours" he was telling us that he'd been in pain for several hours, and not been given anything to relieve it; the physical therapist was unable to make sense of "pro...caine," but when I followed that hint and asked whether he was in pain, and whether he wanted something for it, he said "yes" emphatically, and we found someone with the ability and authority to give him that help.

Vocabulary access is a weird thing: he was using the same few words (including, again, "time" and "time out" a lot) for most things, but then "procaine" came out of somewhere.

Once he got that, he rested a while; he'd had PT earlier, but was back in his room and in bed by then. [He was drowsing and considering eating something when I left, around 12:30]

#515 ::: Velma ::: (view all by) ::: October 28, 2008, 05:50 PM:

For you rockers out there, one of Soren's favorite local bands, System Noise (http://www.myspace.com/systemnoise) will be doing a benefit show for him at Desmond's Tavern on Saturday, 8 November, at 10pm. I'll fill you in on more details when Sarah Mucho, the lead singer (who's been coming to visit him a bunch) gives them to me.

(Mathematically precise rhythm section, with sweeping vocals over them; the sort of thing that Soren loves.)

#516 ::: Marilee ::: (view all by) ::: October 28, 2008, 09:49 PM:

Mez, #511, lots of others. The cards that say "From the Fluorosphere With Love" mean it; I'm just the money handler. (You should have gotten the necklace already and there are three books either there or en route.)

#517 ::: Terry Karney ::: (view all by) ::: October 28, 2008, 11:15 PM:

I can't read this thread too often. There is heartbreak and hope in equal measure, and it's hard to deal with.

But I am so glad he is getting better.

#518 ::: elise ::: (view all by) ::: October 28, 2008, 11:38 PM:

Patrick and I went to the hospital again in the early evening, and Scraps had a rousing discussion of politics with us and Bill Tipper, who stopped by for a while. He was pretty excited about the recent gains by Obama, and at one point he asked about Arizona by saying "Arizona" without any hesitation. (This is a good sign because finding words seems to be becoming easier for him when he's not feeling pressure. At that point he was in the flow of the discussion, and apparently the apraxia or whatever-it-is didn't stop him. Yay! Oh, and he said "Obama" twice, and although each version had either one or two extra syllables, it was pretty darned good and again it was a gain of a word that he said without getting stuck trying to get it out.)

I told him everybody at Making Light says hi, and he said hi back. Same for the WELL folks, and I will have to go over there and say hi from him to them.

#519 ::: Lizzy L ::: (view all by) ::: October 29, 2008, 12:00 AM:

elise and Vicki and Velma, and everyone else who's hanging out with Scraps: I wonder if he could be (deliberately or just as it comes) using rhyming slang when he can't grab hold of the right word; i.e. "procaine" for "pain." Just a thought...

#520 ::: Bill T ::: (view all by) ::: October 29, 2008, 12:13 AM:

Following on what Elise said -- it was really wonderful to see Scraps so improved. Although the aphasia makes it difficult for him to express himself, it still feels very "conversational" hanging out, and (as ever) Scraps has one of the most expressive faces of anyone I know.

At one point (I forget what was under discussion) I believe Elise asked if we were boring him or should stop, and he looked shocked and said "no" -- it was abundantly clear that focusing on the conversation is not a problem.

On to the question of

Visitor Scheduling:

With any luck, Scraps will be leaving Methodist and heading to NYU's Rusk institute rehabilitation unit quite soon. We do not yet know what the policies and general visiting situation will be at Rusk, but we'd like to try to schedule companionship for him on much the same schedule that we've tried to for his stay at Methodist, at least through the course of the next week.

Tomorrow he's still at Methodist, and we have coverage more or less worked out, but we really need folks who can be available for daytime or evening hours (mornings especially helpful) Thursday and Friday or over the weekend.

We've all benefitted from Elise's heroic efforts, but she's going home on Thursday, and will no longer be our crutch to lean on. Velma and Scraps could really use all the help they can get, and this is probably the most important way those of us who are local can give aid and comfort. (The exception is if you own a nice, unoccupied apartment in Brooklyn, and are looking for wonderful tenants).

Those of you who don't live in Brooklyn (but do live in the city or nearby) and would have had a hard time getting to Methodist may find it's a bit easier to make it to Rusk, which is in the East 30s, part of the big NYU medical complex over there.

If you think you have any time at all (even an hour or two is helpful!) please don't hesitate to email me at william dot tipper at gmail dot com. If it's during the 9-5, you might also try btipper at book dot com. That's my work addy -- I can't pick up gmail during the workday, sadly.

A lunch hour, an evening after work, a morning when you can get away -- it all adds up.

Thanks, folks. And thanks again to Patrick and Theresa for (among many other things) letting this be an info-clearinghouse.

#521 ::: elise ::: (view all by) ::: October 29, 2008, 01:51 AM:

And after he said "no" he then said "fassitating," which he then corrected to "fascinating." He was pretty clear about it.

Pardon me; I am not only a crispy critter, but there was a hamster jailbreak chez NH which has only just been resolved. He got out while T was talking to me, to keep me going while I finished the three necklace-chains Velma asked for.

#522 ::: geekosaur ::: (view all by) ::: October 29, 2008, 02:01 AM:

Harriet @493:
Travel cups. Handles and, while usually not sippy tops, have small openings designed to not slosh coffee all over in a moving vehicle.

Marilee @516:
I think Mez was referring to my rejoinder to "what could be more righteous than Schneier on ML?" elsethread.

#523 ::: Vicki ::: (view all by) ::: October 29, 2008, 07:57 AM:

One correction to Bill's post: Karlene from Rusk says that he'll be at 17th Street and Second Avenue, not 34th and First. That's at least as easy to get to.

#524 ::: Velma ::: (view all by) ::: October 29, 2008, 08:40 AM:

This is, of course, assuming he gets to Rusk. We are having some turmoil, because the procedures for the health care proxy to choose at least three rehab places were not followed (read: no one ever told me that until yesterday; when the clinical liaison from Rusk expressed interest in Soren, the hospital decided not to follow protocol, and seems rather unapologetic about it), so with the delays in paperwork at Rusk, New York Methodist is trying to shuffle Soren off to another rehab place, without giving me time or opportunity to research any of the alternatives.

I am, shall we say, less than thrilled. Soren is articulate, and restless, and impatient, but understands more of what's going on than the hospital thinks. When he has more words back, things will be interesting.

#525 ::: Bill T ::: (view all by) ::: October 29, 2008, 09:50 AM:

Argh! That's even more bureaucratic nastification than I'd imagined...

Nevertheless, thanks for the updates, Vicki and Velma. And yes, 17th and 2nd is much easier to get to; a reasonable walk from both Union Square and also the 1st or 3rd Ave. stops on the L. Now, of course, we just have to get him there.

#526 ::: Bill T ::: (view all by) ::: October 29, 2008, 09:51 AM:

Excuse me, for that "we", please read "they" -- need more coffee.

#527 ::: beth meacham ::: (view all by) ::: October 29, 2008, 10:09 AM:

oh dear. Velma, can you enlist the hospital social worker to help you here? It seems to me that the Rusk paperwork probably hasn't gotten to the Hospital administration office.

#528 ::: Vicki ::: (view all by) ::: October 29, 2008, 04:33 PM:

Velma @524:

I suspect that the patient's bill of rights may be relevant here: it gives the patient/their proxy the right to written notice of discharge plans, and the right to appeal such plans. I'm not a lawyer, of course, but I suspect "we're sending you to a facility not of your choosing" may count as a discharge plan in this sense. The patient bill of rights is also your counter to any suggestion that if you won't accept the facility of their choice while waiting to hear from Rusk, they'll kick Soren out.

#529 ::: Bill T ::: (view all by) ::: October 29, 2008, 05:18 PM:

I had a voicemail earlier this afternoon from Velma that indicated that the Rusk paperwork had gone through, and that it was now a matter of transport being arranged.

However, I didn't get a chance to talk to her, so I don't know how copper-bottomed the assurances were. Fingers, as it were, crossed.

#530 ::: abi ::: (view all by) ::: October 29, 2008, 05:22 PM:

Fingers, toes and eyes crossed.

#531 ::: Harriet ::: (view all by) ::: October 29, 2008, 06:52 PM:

Hope!

#532 ::: beth meacham ::: (view all by) ::: October 29, 2008, 07:35 PM:

What I want to read is that Scraps is safely ensconced at Rusk. Fingers crossed!

#533 ::: Marilee ::: (view all by) ::: October 29, 2008, 07:52 PM:

geekosaur, #222, I think she meant that for your part, but she said me and others? for something more solid. I think that's the gifts from the group.

Boy, I hope Soren is in Rusk soon!

#534 ::: Marilee ::: (view all by) ::: October 29, 2008, 09:50 PM:

Lizzy L, #519, he could be doing it purposely or his brain could be shoving it on him. When I lose words, the word my brain supplies is usually the same starting sound, syllables, and rhythm. I've learned to just say that word to my friends with a rising-voice question and they'll give me the right word and we just go on.

#535 ::: Adrian ::: (view all by) ::: October 29, 2008, 11:54 PM:

It's strange how most people continue to think of a medication in terms of a brand name, even after the generics have become so commonplace most people haven't used the brand name stuff in 20 years, if ever. If Soren had said, "Novocaine," I expect everybody in the room would have known he was talking about a pain relief shot. (Unless he likes a song by that name, which is entirely possible.)

#536 ::: siriosa ::: (view all by) ::: October 30, 2008, 12:05 AM:

This is me, visualizing Soren safely ensconced at Rusk. This is me, reminding myself to breathe.

:: hope, hope, hope, hope, hope ::

#537 ::: elise ::: (view all by) ::: October 30, 2008, 12:18 AM:

Hello from this crispy-critter Lioness; I said my au revoirs today, and Scraps squeezed my hand and smiled at me. Last night he said, "Thank you," to me, which meant a lot.

I'm off to my far-off home in Mee-nah-soh-tah tomorrow. My deepest gratitude to everybody who made it possible for me to come here and try to be of help, and whose good wishes and love I carried. Thank you guys a lot for trusting me with that. I hope I helped.

And I am really looking forward to a party when Scraps graduates from inpatient rehab. We were making jokes about it, suggesting that everybody there had to have a bendy straw in their drink *except* Scraps. Whether I'm able to be there in person or virtually, I'll be raising a glass for sure.

And now I must fall over and get up and get on a big silver bird and go home, and look after my Juanster for a while, and make a lot of shinies. Hang in there, you guys. Now I'll be among the ones waiting for updates.

P.S. Thank you, Bill, for all your help in scheduling. Hugs all around.

#538 ::: Lizzy L ::: (view all by) ::: October 30, 2008, 12:23 AM:

elise, you are the best.

#539 ::: Mary Dell ::: (view all by) ::: October 30, 2008, 12:45 AM:

elise @#537: I hope I helped.

I'm certain you did. Well done.

#540 ::: Serge ::: (view all by) ::: October 30, 2008, 02:51 AM:

A big huzzah für elise!

#541 ::: Bill T ::: (view all by) ::: October 30, 2008, 12:03 PM:

I just got this text message from Velma:

"Rusk-301 E. 17th Street, room 390, bed 1. Visiting hours 2:30-8:30."

So, it's official. For those of you who've been waiting to schedule visiting time until you knew the score, there it is. Please let me know if there's a particular time you're planning on being there, so we can try to stagger folks through.

#542 ::: John Houghton ::: (view all by) ::: October 30, 2008, 12:08 PM:

All hail elise the Pagan Saint of Medical Crisis Intervention!

#543 ::: John Houghton ::: (view all by) ::: October 30, 2008, 12:14 PM:

Bill T:
Thanks for the news, my fingers and toes were getting all cramped up from being crossed for so long.
And Great news it is!!

#544 ::: elise ::: (view all by) ::: October 30, 2008, 12:23 PM:

Oh, thank goodness, the Rusk thing happened!

#545 ::: Lin D ::: (view all by) ::: October 30, 2008, 01:04 PM:

Bill T. #541: HUZZAH!!

#546 ::: Xopher ::: (view all by) ::: October 30, 2008, 01:26 PM:

Yeah Rusk!!! And that's closer to where I live, too.

#547 ::: Jo Walton ::: (view all by) ::: October 30, 2008, 01:33 PM:

Oh thank goodness.

And Elise, you are a hero and I will send you a salt caramel the next time I see one.

#548 ::: Epacris ::: (view all by) ::: October 30, 2008, 02:09 PM:

Huzzah again! Very good news indeed.

#549 ::: Vicki ::: (view all by) ::: October 30, 2008, 02:16 PM:

I have reposted the news about Rusk, and Bill's email for arranging visits, to my LiveJournal (redbird.livejournal.com), since a bunch of people are looking there rather than, or before, here.

#550 ::: ethan ::: (view all by) ::: October 30, 2008, 03:51 PM:

Hooray, Rusk!

#551 ::: beth meacham ::: (view all by) ::: October 30, 2008, 05:32 PM:

Yaay! Such good news.


Beth in Calgary

#552 ::: siriosa ::: (view all by) ::: October 30, 2008, 07:02 PM:

:: exhales ::

whew. yay!

#553 ::: Mary Dell ::: (view all by) ::: October 30, 2008, 07:52 PM:

Hip Hip Hurrah! Great news.

#554 ::: Ginger ::: (view all by) ::: October 30, 2008, 09:07 PM:

Great news indeed!

#556 ::: JESR ::: (view all by) ::: October 30, 2008, 11:38 PM:

Great news!

#557 ::: Velma ::: (view all by) ::: October 30, 2008, 11:43 PM:

Am home. Have been at Methodist and Rusk since about 9:30 Wednesday morning, as Soren asked me to stay overnight. Will not discuss Methodist's final shots yet, but sexism and stupidity still run rampant there.

By contrast, Rusk evidently full of courteous people who do not shout, do not order Soren to "be a man" when he's crying in frustration and pain, and who speak to both of us simultaneously as adults. Have spent a good two hours with three of his doctors, and have a lot of information.

Soren has also received another CAT scan, ultrasounds, and chest X-rays. He has a blood clot in his right leg (unsurprising) and will get an IVC filter tomorrow morning. He's not thrilled, but is willing. Rusk intends to work him hard: at least three full hours of physical, occupational, and speech therapy five days a week, plus other therapy as needed/desired.

He has asked to have the television turned on, so I've paid for a month of TV time. The History Channel seems to be what he wants. He's wearing his glasses again, and responding enthusiastically to conversations, and has decided that he doesn't like Percoset: it makes him too woogly.

Velma fried. Sleep now.

#558 ::: Velma ::: (view all by) ::: October 30, 2008, 11:53 PM:

Elise Hero of the Realm. P&T, Bill, Vicki, Ellie, Kris and the Bar BQ gang also heroic.

Velma verbless.

#559 ::: Paula Helm Murray ::: (view all by) ::: October 31, 2008, 12:21 AM:

I so wish I could get there easily. I have no commitments except a fairly small freelance project a friend has given me.

But I'm stuck in Kansas City and we're pretty much totally broke. We DO have small convention here in town, I'll make a bit of dough on my dealer's table, but probably barely make the room charge.

Best wishes to all and I hope Scraps has a good recovery.

#560 ::: elise ::: (view all by) ::: October 31, 2008, 12:25 AM:

Home safe. Tired. Still thinking of Scraps. Love to all.

E,
soon to zzzzz

#561 ::: geekosaur ::: (view all by) ::: October 31, 2008, 12:40 AM:

Yay Søren and Rusk, boo Methodist.

#562 ::: elise ::: (view all by) ::: October 31, 2008, 01:13 AM:

It suddenly occurs to me -- did they put TED stockings on him at any point in his long bedrest, or do anything else to protect against blood clots in the leg?

If you should decide you need it, I left the contact info with Patrick of the law firm with the best record of prosecuting medical malpractice cases in Brooklyn. Just in case.

#563 ::: Harriet Culver ::: (view all by) ::: October 31, 2008, 03:37 AM:

Elise @ 562 -

They certainly didn't have anything at all on his feet or legs either of the two times I was there, which I think added up to about 9 hours together.

What I did see was that (ISTR it was while Laura and I were there on Monday evening) a nurse came and took away that mass of plastic-tubing-stuff that had been draped on the footboard of the bed, just to the left of the control buttons for the bed, to use in another patient's room. She indicated to us, as we were scooting around to let her get by on our side of the bed to unplug the thing from the electrical wall outlet, that it was connecting tubing for those pneumatic compression boots (such as I remember using during my two week-long postsurgical hospitalizations last year). But there was no sign of the 'boots' themselves at any point that I saw. Still, perhaps the fact that the tubing was draped there over the foot of his bed indicates that they had used such boots at some point during his long stay?

#564 ::: Velma ::: (view all by) ::: October 31, 2008, 08:17 AM:

They had used the pneumatic compression boots for the first two weeks or so of his stay at Methodist. He became very expert at removing them and kicking them out of the bed.

Just one last word about Methodist: you would think that when someone is to be discharged at 9:00am, that there would be some reference to this in the patient's charts accessible to the staff on duty at 8:15am, when the health care proxy walks up to the desk to ask whether she should dress the patient, wouldn't you?

#565 ::: Velma ::: (view all by) ::: October 31, 2008, 02:04 PM:

i have Soren's absentee ballot! It went, oddly enough, to the post office box -- but I don't care. We have it!

#566 ::: Allan Beatty ::: (view all by) ::: October 31, 2008, 09:53 PM:

Velma, thanks for sharing Scraps's progress. I've been checking here every day.

He'll be pleased to know I cast my early ballot for Obama instead of going third party, thanks in part to his speech about "Vote your conscience, not your pride."

#567 ::: Xopher ::: (view all by) ::: November 01, 2008, 11:21 AM:

Apparently y'all are doing everything exactly right by making sure Scraps has his favorite music. Patients who have music (with words) when recovering from stroke recover language faster than ones who only listen to audio books.

Apparently this is because melody is stored on the right side of the brain, and language on the left, so words and music together encourage whole-brain function. Or something like that; I didn't follow everything they were saying. I'm pretty sure they said that familiar songs are better than new ones, for obvious reasons.

Studio360 piece about it here (second one down on the right, "Music, Language, and Memory); article from the journal Brain here.

The lady on the Studio360 piece was a lot older than Scraps when she had her stroke, and she had a much more severe one; again, I don't remember all the details, but they talked about multiple events in different parts of her brain, and she didn't go to the hospital anywhere near as quickly as Scraps did.

#568 ::: Bruce Arthurs ::: (view all by) ::: November 01, 2008, 11:27 AM:

I had an experience the other night that gave me a better idea of what Scraps is going thru.

Hilde had woken me about 3am for the extra set of middle-of-the-night meds she frequently requires. Usually this proceeds on a fairly automatic basis.

This particular time, however, fell right into the worst possible point of my sleep cycle, compounded by having been short on sleep anyway and getting to bed late again.

So every step of getting out of bed, getting pills together, etcetera, was a struggle. A big struggle. I felt like my head was wrapped in about fifty pounds of cooked oatmeal.

At some point, I needed to say something. And the word that I needed to say was not there.

But I needed to say it. So I tried to struggle thru that oatmeal weighing me down, trying and trying. There was a word, it was the right word, if I just fought and struggled hard enough I could find that word.

Yes! There! The word! The right word, the exact word I needed! There, in my head! Yes! Yes! Yes!

And I opened my mouth and I said:

"Godzilla!

Even now, a day later, I'm struck by the absolute certainty in my mind then that I had the right word, that I was saying the right word.

What a weird... and in some measure, alarming... experience.

And this, I think, is some of what Scraps is going thru. All the time. So I'm glad to hear that he's showing improvement, and hope the personnel at Rusk speed that recovery along.

#569 ::: elise ::: (view all by) ::: November 02, 2008, 01:01 AM:

Yay for having his ballot. I am sure he will be glad about that.

And yeah, he's in the hard part. But he is making progress, even if he doesn't believe it, or is too heart-sore to want to embrace life-as-it-is just now. A guy might be in a bad mood about it... but that, too, will pass, according to a lot of stroke survivors.

Now and always, I have a candle lit in my heart for Scraps.

#570 ::: Velma ::: (view all by) ::: November 02, 2008, 09:22 AM:

Update: He's on real food again, which is making him happy, though on thickened liquids. I understand the reasoning behind the pureed diet until the Rusk speech pathologist could see him, but there was a delay in activating the soft food order, which meant that he refused several meals.

The IVC filter was installed through his throat, so he's a bit sore. I got to trim his moustache and buzz off his head hair; today, I may work on his beard. They're trying new painkillers, as the Percoset is not working to anyone's satisfaction.

Big accomplishment yesterday: he stood, with weight on both legs, for about 30-45 seconds yesterday, with help from the therapists. It was painful, and exhausting, but he did it.

#571 ::: P J Evans ::: (view all by) ::: November 02, 2008, 09:25 AM:

Yay!

#572 ::: Mez ::: (view all by) ::: November 02, 2008, 09:51 AM:

#570: Food and Standing — Oh Yeah!

#573 ::: Lila ::: (view all by) ::: November 02, 2008, 09:53 AM:

Hooray for the standing, from this physical therapist assistant down in Georgia. Go Scraps!

Velma: someone's probably told you this already, but it bears repeating: Neurological recovery is characterized by multiple plateaus. Apparently the brain has to pause every so often to consolidate the recent progress it's made; so you'll see improvement, followed by a period where nothing seems to be changing, followed by more improvement.

All this is to say, when a time comes that it looks like he's stopped progressing, don't assume that's all he's going to get. It's not.

#574 ::: edward oleander ::: (view all by) ::: November 02, 2008, 10:01 AM:

Velma that's great! I know it will be tough to convince Soren about just how significant that is, but bearing weight bilaterally really is huge. It has positive implications for future therapy, as well as being a big step (groan!) on it's own...

I'm with Scraps on the percocets. The docs always seem surprised when I refuse them, telling them that I might as well eat M&Ms 'cause at least they taste good.

There's a pain combo that is often overlooked by the docs, but has worked for me after surgery: Tylenol with codeine (30mg)(Tylenol #3) supplemented at the same time with regular dose aspirin. Larger amounts of aspirin may or may not be an option right now, but it's worth asking the docs about.

I looked up every doc at Rusk... no AMA complaints back to 1991, and impressive resumes...

Hugs to you and Scraps!

#575 ::: elise ::: (view all by) ::: November 02, 2008, 11:03 AM:

both legs both legs both legs YAY!!!

#576 ::: xeger ::: (view all by) ::: November 02, 2008, 11:36 AM:

Woo hoo!!!! :D

#577 ::: James D. Macdonald ::: (view all by) ::: November 02, 2008, 12:30 PM:

This is better than the best news. It's outstanding news.

#578 ::: ethan ::: (view all by) ::: November 02, 2008, 12:59 PM:

This is better than the best news. It's outstanding news.

Upstanding, even. Woo hoo, Scraps!

#579 ::: Serge ::: (view all by) ::: November 02, 2008, 01:05 PM:

Good news, Velma!

#580 ::: Lizzy L ::: (view all by) ::: November 02, 2008, 02:31 PM:

Great news, Velma! Both legs, woot!

Pain med: I am allergic to ibuprofen and because of that can't take naprosyn or aspirin. For pain which (which? that? Help, I need a copy-editor!) overwhelms Tylenol, I take 50-100 mg Darvocet-N. It works for me and best of all it does not fuzz me out: I can drive, read, and think. It's amazing to me how individual the response to pain medications is. My mother, alas, was allergic or had lousy reactions to many of the standard narcotics, including morphine. I react very badly to Vicodin. We're all different.

#581 ::: LauraJMixon ::: (view all by) ::: November 02, 2008, 03:44 PM:

Lizzy: "that." :)

#582 ::: siriosa ::: (view all by) ::: November 02, 2008, 04:46 PM:

Huzzah! A standing O for soren standing!

Bet it was the longest half minute in his life so far.

#584 ::: Xopher ::: (view all by) ::: November 02, 2008, 07:26 PM:

Wooooooot! Standing! Yay!!

#585 ::: Caroline ::: (view all by) ::: November 02, 2008, 08:40 PM:

Get up, stand up,
Stand up for your rights.
Get up, stand up,
Don't give up the fight.

That's absolutely fantastic news!

#586 ::: Marilee ::: (view all by) ::: November 02, 2008, 11:05 PM:

Standing up, then marching in place, then moving to a close chair, then walking. It hurts, it's annoying making your legs move, but it's how you walk again. Yaaaaay, Soren!

#587 ::: Velma ::: (view all by) ::: November 04, 2008, 03:30 PM:

At 9:30pm on Saturday, 8 November 2008, the band System Noise is performing at Desmond's Tavern, 433 Park Avenue South. Sarah Mucho, the lead singer, has decided to make it a benefit concert for Soren. I continued to be awed and humbled by our friends.

The band... well, he'd be able to describe them better, but it's a wonderful mathematically precise rhythm section, with fierce wailing vocals on top. They're good; we've gone to see them a number of times, in all sorts of places. You can find some of their music at http://www.myspace.com/systemnoise. The facebook information is here: http://www.facebook.com/event.php?eid=33638048215&ref=nf

#588 ::: ethan ::: (view all by) ::: November 05, 2008, 10:24 AM:

Sounds awesome, Velma. Wish I could be there.

#589 ::: Marilee ::: (view all by) ::: November 05, 2008, 10:56 PM:

Velma has been posting more in her LJ, including a picture today!

#590 ::: Jeff Nye ::: (view all by) ::: November 06, 2008, 12:21 AM:

Scraps, everybody at USS Mariner is pulling for you.

Get well soon, and we'll be sure to have a huge argument about Willie Bloomquist waiting for you when you get back.

#591 ::: ethan ::: (view all by) ::: November 06, 2008, 01:40 PM:

That is a severely awesome picture.

#592 ::: Velma ::: (view all by) ::: November 13, 2008, 04:06 PM:

Quick catch up:

I had the meeting with his team on Monday: speech therapist, physical therapist, occupational therapist, doctor, neuropsychologist, and social workers (the neurologist was off duty). I have three pages of notes which include: transcortical motor aphasia, apraxia, perseveration, limited multitasking capacity; slightly more movement in right side of body, including right trunk, ability to flex right hip; problems balancing because of lack of control of right side; subluxion, because right shoulder girdle is weak; medically stable; off blood pressure and heart-rate meds; on assorted pain and mood meds (he dislikes the Percoset, even though it's effective, because it makes him woobly); no more suicidal ideation -- in part because the pain is being managed better.

One of the most important things about his pain management is that after much discussion, one of his nurses and I finally convinced the doctors that, yes, Soren does have a smaller than normal bladder, and making him wait for a normal man's level of fullness before catheterizing him meant that he is in pain/agony for at least an hour, several times a day. That alone has made him a happier person; he's still in pain, but he doesn't have an overloaded bladder on top of the other pains.

I am beginning to suspect all hospital kitchens of evil: they've been putting bananas on his lunch trays here, as well. A memo has been sent, I believe. (Fortunately, he doesn't like bananas; unfortunately, the smell sometimes puts him off eating.)

I'm working during the weekdays, and seeing him in the evenings. We've been watching Jeopardy; he can't find the words fast enough to guess the questions, but he's still enjoying watching.

We are also watching The Daily Show and The Colbert Report, and he's been laughing his head off. (We may have to get cable at last.)

On Tuesday, he got a visit from Eric Schwartz (of "Keep Your Jesus Off My Penis" fame), who's an old friend of mine, and that brightened up his evening as well. (No, Eric did not sing, which is both a bad -- he's got a lovely voice -- and a good -- he's got a wicked mind -- thing.)

Soren enjoys having company, and has no qualms about telling people to slow down, to repeat themselves, or to be quiet, so if anyone wants to drop by during the afternoon (visiting hours are 2:30-8:30), his therapy sessions usually end by 3pm.

I'm sorry I've not been updating as much. I'm trying to catch up with things like bill paying (which he handled), email, work, financial issues, and reviewing the list of potential sub-acute rehab places for him to go to. As most people probably know (I didn't), all insurance companies use charts: a stroke victim with, say, paralysis on one side, inability to walk, aphasia, etc., will get a certain number of days paid for in acute rehab, then a certain number in sub-acute rehab.

His anticipated discharge date from Rusk is 25 November.

Here we go again.

#593 ::: P J Evans ::: (view all by) ::: November 13, 2008, 04:11 PM:

Thanks, Velma! I was wondering how he was doing.
(Insurance companies can be Evil.)

#594 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: November 13, 2008, 08:39 PM:

P J Evans

Insurance companies can beare Evil.

FTFY

#595 ::: P J Evans ::: (view all by) ::: November 13, 2008, 09:55 PM:

I was trying to be cautious. Sometimes they're okay.

#596 ::: Marilee ::: (view all by) ::: November 14, 2008, 12:17 AM:

I hope you find a good place for the sub-acute care!

#597 ::: Earl Cooley III ::: (view all by) ::: November 14, 2008, 05:25 AM:

When insurance companies appear to be not evil at a particular moment, it only means that they're being evil to someone else, and you'll just have to wait your turn. Heh.

#598 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: November 18, 2008, 07:58 PM:

I'll be more forgiving of insurance companies if I can just get mine to stop trying to stop my back surgery. Currently working with 3 doctors and a lawyer to bury them in documentation.

But the same company is also giving us trouble over Eva's dental work. The dentist is a friend, and she's really trying hard to keep our costs down because Eva's teeth have been badly damaged by reflux; we're currently north of several thousand dollars out of pocket, and even when they do pay, they only pay half.

Evil, I say! Most Evil!

#599 ::: Marilee ::: (view all by) ::: November 19, 2008, 12:23 AM:

Yes, very bad insurance company!

#600 ::: Velma ::: (view all by) ::: November 19, 2008, 11:11 AM:

A few quick updates: Soren is regaining control of his right leg, and is standing for longer periods. The physical therapist is working on his standing and his balance, and he's getting much stronger.

I convinced the doctors to let me take him outside yesterday for a little while, so Claire and I bundled him up and wheeled him out to the front of the building, and he got fresh air and daylight for the first time in six weeks.

I have also been smuggling food, as Rusk, for all its good qualities, seems to have only six dinner entrees for the standard menu, and he's stopped eating out of boredom. On Monday, I brought a tuna and avocado roll, and he pounced on it with cries of delight; yesterday, I brought him yellowtail and mackerel.

His words are coming back steadily, and he's observed that he actually finds it easier to talk with two to four people, as more minds seem to help find the words he's missing.

The anticipated discharge date has been moved to 5 December, and I've got several places that I'm investigating. I'm also going to try to sign up for the half-day workshop on being the partner of someone with a traumatic brain injury that's taking place on Saturday.

#601 ::: Velma ::: (view all by) ::: November 19, 2008, 11:52 AM:

I have successfully signed up for the program (which, conveniently, is at Rusk); however, it runs from 9am to 4pm on Saturday. If anyone is available to hang out with Soren from 12:30 to 4pm Saturday (or any section of that time), please let me know.

(Did I mention that yesterday, he told all his nurses and therapists and doctors that it was my birthday, so I got birthday wishes from the entire staff? Or that the staff like him, because he has a sense of humor, and keeps making smartass remarks?)

#602 ::: Lizzy L ::: (view all by) ::: November 19, 2008, 12:23 PM:

Thanks for the update, Velma. It's terrific to know that Scraps is improving!

Fresh air, sunshine, good.

#603 ::: elise ::: (view all by) ::: November 19, 2008, 12:28 PM:

I am utterly certain he has charmed the staff.

#604 ::: Xopher ::: (view all by) ::: November 19, 2008, 12:49 PM:

Is he getting enough visitors? I've been awash in other concerns lately, but I don't want to abandon him completely.

#605 ::: Velma ::: (view all by) ::: November 19, 2008, 12:59 PM:

Visitors are pretty much always welcome, particularly in the 2:30-6:30 period (when I'm at work), though he sometimes has therapy as late as 3-4pm, so you might find yourself waiting, or sitting beside him while he's getting a workout. Which is not a bad thing, as the more friends who understand how to help him recover, the better.

Part of what's going on is that he is having difficulty reading, and tracking what's he's read, so conversation is better for him. And people who can discuss politics well are always welcome.

And if you're experienced with wheelchairs, now that he's been cleared to go out, he would love to get out and get fresh air every so often. (I'm only licensed to go to the edge of the porch; I need more training.)

#606 ::: Jacque ::: (view all by) ::: November 19, 2008, 01:26 PM:

With all the music mavens around here, y'all probaly know about this already, but the discussion of sleep apnea reminded me and I thought I'd pass this along: Singing for Snorers

#607 ::: Linkmeister ::: (view all by) ::: November 19, 2008, 01:40 PM:

There is an art to pushing an occupied wheelchair. Sudden bursts of speed are disconcerting to the person in the chair, as are things like squeezing along narrow walkways without assurances that it can be done easily. If you're easily frustrated by backseat drivers, tamp down the frustration. The person being wheeled about has zero protection from the impending collision, unlike in a car where at least there are engine compartments and front seats to minimize its results. His/her worry may seem foolish to you, but to the occupant it's very real.

#608 ::: Madeline F ::: (view all by) ::: November 19, 2008, 03:43 PM:

I have a friend who is sometimes in a wheelchair, and from her rantings the thing I picked up is: the wheelchair is part of her body. Do not touch it without asking. Do not bump it without apologizing. Do not presume to move her.

Might be different for people who aren't accustomed to wheelchairs, but eh, who knows.

#609 ::: Earl Cooley III ::: (view all by) ::: November 19, 2008, 05:30 PM:

Since Joann mentioned at @379 her dissatisfaction with food service at Seton Healthcare, I've had an opportunity to reevaluate my findings, due to a brief hospitalization (which today is my first day of freedom from same, as I am feeling much, much better). Wearing a more analytical Saturday Dining Conspiracy hat this time, I've come to understand that my misplaced affection for food at the Seton hospitals was based on a couple of factors: I didn't have to prepare the meals myself, and they presented a much wider variety of foods than I am used to having on my own under the ramen-dominated Solitary Curmudgeon's Diet Plan. One thing in particular which annoyed me this time was the fact that they would make changes to the standard menu and not consistently document them. Some substitutions were reasonable, but often there were items missing for no reason I could ascertain. The longest delay was over two hours to receive the missing items. Distribution was an issue as well, as room placement seemed to affect delays in tray delivery; I only received hot coffee once during my entire stay.

#610 ::: Marilee ::: (view all by) ::: November 19, 2008, 10:09 PM:

I'm glad you're home Earl. Next time, have them teach you more exciting things to do with ramen!

I had PT today and the therapist is working hard on my balance. I walked on a treadmill for the first time! Sideways sidestepping, and as slow as it goes, but still. Once the first minute was up, I wasn't so scared. And there's a little clip thing that's a form of killswitch.

#611 ::: Velma ::: (view all by) ::: November 20, 2008, 12:10 AM:

Oh, Helen (fimbrethil on LiveJournal) posted, and reminded me of something people might find amusing: over the weekend, when she, Howard, Ann and I were with Soren, he had a moment when he couldn't find the words he wanted, so he waved at us, and said, "Talk amongst yourselves." This, as Helen wrote, resulted in a room full of hysterical laughter.

He told me that he walked today! A few steps, with help, but he walked. Ellie may have more details -- he said she was there. wooHOO!

#612 ::: Serge ::: (view all by) ::: November 20, 2008, 02:55 AM:

Velma @ 611... Woohoo indeed!

#613 ::: Velma ::: (view all by) ::: November 20, 2008, 10:38 AM:

Update from Ellie this morning:

Friends of Scraps!

This is a bonus progress report because Scraps took his first steps yesterday!

Yesterday, I got to Rusk in the middle of the physical therapy session, just in time to see Scraps stand, which I’ve witnessed before. Holding the back of a tall chair, the physical therapist then had Scraps walk across the room! He was able to take normal steps with his left foot, shuffled with the right, at times aided by the PT, who would give his foot a little push. He really booked across the room, and the PT had to ask him to slow down a few times, and while it was clearly exhausting, he was determined to get across the room. When he could go no further, the PT got his wheel chair and had him sit. He looked at me and said, "I want a hug!" which he had surely deserved.

When we went back to his room, we talked about games (he told me that Rock Band is lots of fun but not a game) and cards -- he pantomimed sleeping when we talked about bridge. He listened to music with his new iPod dock, and the speech therapist came in and “danced” with him for a minute. While I was there, he got a card, which made him happy, and also passed judgment on my purse, which he considers excessively big. In general, he was in excellent spirits, very funny, laughed a lot and had more words at his disposal, in addition to more memory. After he ate dinner, he wanted to nap and I went home.


WOOHOO! He told me about this when I got there after work, but I was waiting for Ellie's eyewitness report.

#614 ::: elise ::: (view all by) ::: November 20, 2008, 11:03 AM:

EXCELLENT!!

Please to give him my congratulations on this milestone!

#615 ::: Caroline ::: (view all by) ::: November 20, 2008, 11:17 AM:

YAYAYAYAY! Cheers, champagne! Walking is GREAT!

#616 ::: Lila ::: (view all by) ::: November 20, 2008, 12:30 PM:

Yay Soren!! When I worked (briefly) in inpatient rehab, helping someone walk for the first time since their admission was one of my absolutely favorite things.

#617 ::: Christopher Davis ::: (view all by) ::: November 20, 2008, 01:05 PM:

Velma (#611/613): Absolutely wonderful news. Wonderful.

#618 ::: abi ::: (view all by) ::: November 20, 2008, 01:51 PM:

w00t! Yay Scraps!

#619 ::: Velma ::: (view all by) ::: November 20, 2008, 02:41 PM:

Another bit of awesome and humbling news: our piano bar friends are having a benefit for Soren on Monday night, 24 November. It will be Upstairs at The Stonewall Inn (53 Christopher Street), starting at about 7:30. I'm not entirely sure of all the details, though I know that Clare Cooper will be playing, and Kimlee Hicks will be singing; there will also be plates of food for sale.

I'm trying to put together a few of Soren's and my posts about our piano bar experiences, as well as some flyers about strokes and how to recognize them. (I will actually not get to the benefit before 9:00, as I spend my evenings with Soren, but I will definitely be there, and might even sing with Ricky afterwards, if I'm not too verkempt.)

#620 ::: Nina A ::: (view all by) ::: November 20, 2008, 03:24 PM:

Woo Hoo! Go Scraps!

#621 ::: ethan ::: (view all by) ::: November 20, 2008, 07:09 PM:

This is all very, very exciting. Hooray!

#622 ::: Harriet ::: (view all by) ::: November 20, 2008, 07:58 PM:

O wow! what great progress!

#623 ::: Melissa Mead ::: (view all by) ::: November 20, 2008, 08:49 PM:

That's fantastic!

#624 ::: Velma ::: (view all by) ::: November 23, 2008, 11:44 AM:

Soren says "Hello, all," by the way. I printed out this thread a few days ago, and he read it; yesterday, I brought our Asus EEE, and went online, and he looked at USS Mariner for about fifteen minutes. He's having trouble focusing on more than a paragraph or so of text at a time, but wanted to check in. (Today, it'll be Popdose, I think.)

We went out for a very short time yesterday -- too cold and windy for him, but he did want the air -- and if all goes well, in the next few days (possibly this afternoon), I'll get trained in how to operate a wheelchair on the streets. I got a little training from the physical therapist yesterday, but not enough to make me feel secure about going out on my own. Howard will probably put me through boot camp shortly.

He is bored, as you might expect. Conversation, games, movies, and exercise make up most of his stimulation. I expect to be sent on missions for more games shortly, particularly two-player games.

#625 ::: Serge ::: (view all by) ::: November 23, 2008, 12:31 PM:

My best wishes to Soren, Velma.

#626 ::: Melissa Mead ::: (view all by) ::: November 23, 2008, 04:24 PM:

:Waves: Hello back!

My sympathies. Hospitals and their ilk can be so boring.

#627 ::: Marilee ::: (view all by) ::: November 23, 2008, 10:07 PM:

Say Hello back!

#628 ::: Terry Karney ::: (view all by) ::: November 23, 2008, 11:32 PM:

Hello Scraps.

An entertainment.

Le Penseur

#629 ::: LauraJMixon ::: (view all by) ::: November 24, 2008, 06:51 PM:

Hello, Scraps!

#630 ::: miriam beetle ::: (view all by) ::: November 24, 2008, 09:09 PM:

hello, scraps!

i greedily await your name back up at the top of a making light comment box.

#631 ::: Raphael ::: (view all by) ::: November 25, 2008, 05:21 AM:

Hi Scraps!

#632 ::: Velma ::: (view all by) ::: November 25, 2008, 03:34 PM:

And while I'm still stunned by the generosity of our piano bar and LJ and SFWA friends, I got a message today:

Wednesday, November 26th 9:00-Midnight: Ray Gehring & W.I.G.
@ ELLIS BAR 627 5th Ave., Park Slope
Sean Wayland: piano/keyboard, Ronen Itzik: drums, Ray Gehring: guitar

This night of music is dedicated to our friend Soren deSelby-Bowen, a great lover of music, who suffered a stroke earlier this Fall. Please donate anything you can to his overwhelming recovery costs and receive a free Ray Gehring Trio CD. No cover: Except can of food and anything to contribute to Soren's recovery.

Ellis Bar is in Park Slope, Brooklyn at 627 5th Ave. btwn 17th & 18th Streets. 718-768-0532

You are all leaving me breathless with gratitude and wonder.

#633 ::: Marilee ::: (view all by) ::: November 25, 2008, 08:10 PM:

That's great, Velma! I wish I lived closer!

#634 ::: Dusti ::: (view all by) ::: November 27, 2008, 01:09 PM:

Hi, Scraps!
You are amazing. :)

#635 ::: Nina A ::: (view all by) ::: November 27, 2008, 01:49 PM:

Hi Scraps!

#636 ::: elise ::: (view all by) ::: November 27, 2008, 01:55 PM:

Woo! Hi, Scraps!

#637 ::: Lizzy L ::: (view all by) ::: November 27, 2008, 03:07 PM:

Hi Scraps, hi Velma, wonderful news -- and Happy Thanksgiving!!

#638 ::: Melissa Mead ::: (view all by) ::: November 27, 2008, 08:10 PM:

Happy Thanksgiving to both of you!

#639 ::: Velma ::: (view all by) ::: November 28, 2008, 09:14 AM:

Quick update: Soren used a walker yesterday -- yes, he gets physical therapy seven days a week at Rusk -- and walked about thirty feet.

The therapists are also using something like a TENS unit on his right arm, hoping to get more muscle responses out of it.

Sorry this is so brief, but I'm on the verge of meltdown....

#640 ::: P J Evans ::: (view all by) ::: November 28, 2008, 09:33 AM:

That's excellent news!

#641 ::: Serge ::: (view all by) ::: November 28, 2008, 11:00 AM:

Hang in there, Velma.

#642 ::: LauraJMixon ::: (view all by) ::: November 28, 2008, 07:23 PM:

Velma, thanks for these periodic updates. They're appreciated. Sending positive thought waves your way.

#643 ::: Ginger ::: (view all by) ::: November 29, 2008, 10:23 PM:

Great news, hope it all keeps moving smoothly along.

#644 ::: Velma ::: (view all by) ::: November 30, 2008, 10:10 AM:

The device on his arm is a BioNess, for the record, and we're going to look into whether he can get one when he's in outpatient work.

Big news yesterday: he flexed his right arm, bringing his forearm up to a 90-degree angle. Three times in physical therapy, then three times while Bill and I watched in mid-afternoon.

Progress!

#645 ::: Mary Aileen ::: (view all by) ::: November 30, 2008, 10:27 AM:

Yay, progress!

#646 ::: Serge ::: (view all by) ::: November 30, 2008, 10:49 AM:

Hurrah for progress!

#647 ::: Linda ::: (view all by) ::: November 30, 2008, 11:39 AM:

Scraps, old friend, I am so grateful for all your current friends whom I see keeping up with you here. I wish I could be one of those who gets to hang out with you but it's a long way from Texas.

#648 ::: Lila ::: (view all by) ::: November 30, 2008, 12:39 PM:

Hooray for the right-upper-extremity movement and walking with a walker!

#649 ::: Mez ::: (view all by) ::: November 30, 2008, 03:21 PM:

Good to hear Scraps is still progressing. It sounds like Velma is working to not get overwhelmed.

I hope all you in the support net are able to keep it working. My best wishes that the 'official' supports are available and effective. I wouldn't have survived this long without a lot of help, both acute and chronic, social/government and personal.

#650 ::: Terry Karney ::: (view all by) ::: November 30, 2008, 10:30 PM:

Go Scraps (and what a time to have a good name. Scrappiness is what's needed to put up with PT).

#651 ::: Velma ::: (view all by) ::: December 02, 2008, 04:10 PM:

Cross your fingers, light candles, or whatever you do, folks: the applications for Soren's sub-acute rehab have gone in. I walked over to Village Nursing Home/Short-Term Rehabilitation Program, which is near my office, and while they were busy, it was a "we have people to take care of" busy, rather than, "check this case off my list" busy, and I liked the way the people there talked with each other and the patients I saw.

Hope...

#652 ::: Marilee ::: (view all by) ::: December 03, 2008, 12:34 AM:

Can't cross my fingers and type, so I crossed my toes.

#653 ::: Velma ::: (view all by) ::: December 03, 2008, 05:17 PM:

Well, he won't be in Manhattan.

#654 ::: Xopher ::: (view all by) ::: December 03, 2008, 05:34 PM:

Is your office in Manhattan? Is that good or bad, in other words?

#655 ::: Marilee ::: (view all by) ::: December 03, 2008, 10:15 PM:

Bad. But he can be transferred when there's an opening in the place they want, so they just have to hang on.

#656 ::: Stefan Jones ::: (view all by) ::: December 03, 2008, 11:30 PM:

I think we should retire this thread and open another with a less alarming title.

To continued progress!

#657 ::: Velma ::: (view all by) ::: December 04, 2008, 04:35 PM:

He's been accepted to Atlantis Rehabilitation and Residential Healthcare Facility. (I'm not sure we want to try the whirlpool, though....) He's moving over there tomorrow, so this might be a good time to either open a new thread, or end this one.

After he gets over there, I am going to melt down for a bit.

#658 ::: P J Evans ::: (view all by) ::: December 04, 2008, 04:41 PM:

#657
Their website has a front page with the headline 'Welcome to Atlantis!'

I think I'd want to avoid more than just their whirlpools.

#659 ::: Terry Karney ::: (view all by) ::: December 04, 2008, 05:05 PM:

Velma: That's great news, and a small meltdown might be in perfect order.

#660 ::: Kristen ::: (view all by) ::: December 04, 2008, 06:19 PM:

Hey, it's by a park! That seems good.

#661 ::: LauraJMixon ::: (view all by) ::: December 04, 2008, 10:46 PM:

Thanks for these updates, Velma. They're appreciated.

#662 ::: Velma ::: (view all by) ::: December 17, 2008, 11:06 AM:

Some horrific, some good, some potentially amazing things going on, but I am in a very brittle, very overwhelmed state, and am not up for posting details right now. Your good wishes are appreciated, but I'm asking people not to press me for information, not to push me to immediately take the actions they think are best, and not to leap in and try to take over for me without actually consulting me.

I'm going to use the word "boundaries" here. Soren and I are a private couple, something of a duprass in fact, and have been living a very public life for the past two months. This is hard on us, and as the one who is currently the most vocal, I don't want to rip anyone's head off because they were the most recent person to hit one of my sore spots.

#663 ::: Xopher ::: (view all by) ::: December 17, 2008, 11:15 AM:

I hear you, Velma. Bright blessings, and please let us know what you need whenever you need it. Right now, that's pretty much "being left alone," so I for one will do so.

#664 ::: Vicki ::: (view all by) ::: December 17, 2008, 04:12 PM:

Velma has asked me to pass on a request.

Please email her before going to visit Soren. It's not that he doesn't want company, because he does. It's that they also want some time alone, with something resembling privacy, and that's very hard for him to get at the rehab facility. Knowing ahead of time who's going to be visiting will help a lot.

Also, please be flexible if at all possible: there might be good reason for you to come Friday instead of Thursday or vice versa. (This paragraph is mine, not hers, so if it seems unreasonable, take it up with me, not Velma.)

#666 ::: Scraps ::: (view all by) ::: October 06, 2009, 02:01 PM:

I'm not the type who posts just to have a number in the thread. But I will this time -- 666! -- because the thread is, well, mine; and this has been one year exactly. Hello!

#667 ::: abi ::: (view all by) ::: October 06, 2009, 04:11 PM:

Scraps @666:
I wish we had a time machine, to send that comment back a year.

I know you're struggling, and not where you wish you were with your recovery, but I look back at this thread and I start crying again. We were so afraid for you.

#668 ::: Xopher ::: (view all by) ::: October 06, 2009, 04:19 PM:

Scraps, I ditto abi.

#669 ::: TexAnne ::: (view all by) ::: October 06, 2009, 06:25 PM:

And I, Scraps.

#670 ::: Stefan Jones ::: (view all by) ::: October 06, 2009, 07:21 PM:

Aieee! The Post of the Beast!

#671 ::: Terry Karney ::: (view all by) ::: October 08, 2009, 05:01 PM:

Scraps @ 666: And there was much rejoicing.

#672 ::: David Harmon ::: (view all by) ::: October 08, 2009, 06:11 PM:

So any archive-readers can follow along... Scraps has a new thread.

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