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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 Does anyone have a superseded iPod, or failing that a CD player or other musical device they won’t mind losing if someone swipes it from his room?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:And don’t we all, at moments like that.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.
#453 ::: Teresa Nielsen Hayden ::: (view all by) ::: October 06, 2008, 07:59 PM: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.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.
#483 ::: Velma ::: (view all by) ::: October 07, 2008, 02:45 AM: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.”… 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.
#494 ::: elise ::: (view all by) ::: October 07, 2008, 10:50 AM: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…”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. …
Bright Blessings for a swift and complete recovery. Scraps is in my prayers and thoughts.
I might have a spare CD player at home, will poke around tonight and see.
My best wishes for his prompt and full recovery.
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?
When the time comes, I can help with music gathering. I have a number of those albums on his list.
Read too fast. Off to look at the music.
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?
though an iPod does sound much more ideal for the situation...
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.
Good luck to Soren and all concerned. This is surprisingly saddening to me.
I'll send some music his way.
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.
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"?
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?
That description of the symptoms made my memory go very cold, and then his bp . . . Prayers and good wishes to everyone concerned. Be strong.
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.
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.
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).
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.
Good thoughts and best wishes for Scraps, Velma and friends and family.
Let us know where to send contributions.
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
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.
Scraps, I love your music blogging and enjoy your commentary here as well. Please heal completely and speedily.
Not that he knows me at all, but best wishes.
I want to send my best wishes and hopes.
Send.
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?
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?)
(Okay, so my name now links to my blog. If you click view all by, the URL includes my email.)
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.
I'm so sorry.
Blessings to all who love him, and my best wishes for health for the man himself.
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.
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.
John and I send Scraps and Velma both our love and encouragement.
Eileen & John
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.
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.
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.
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.
Oh no. Scraps, best wishes for a good recovery.
Can someone set up a paypal drop for well-wishers to send cash?
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.
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.
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.
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.
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.
Aw shit. I only met Scraps once, and it's still vivid. Best wishes to him and Velma - and to Patrick and Teresa.
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.
Hmm, given Scraps' history and knowledge base I'm not certain ETAOINSHRDLU counts as an unfamiliar order, but perhaps you're right.
People I like need to stop going in the hospital.
Best wishes to all.
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.
Sending good thoughts and prayers for Scraps' recovery, and comfort to all who love him.
So, um, if we want to send some music, how do we do this? Is someone's e-mail accepting mp3s?
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.
My best wishes and prayers to Scraps and Velma.
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
I've passed this along to scaps' friends at USSMariner.com. I hope he has a full recovery.
...and that previous post shows why I can never really be a copyeditor or proofreader.
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.
I have a mix tape for Scraps, but I don't have Velma's email address. Can you provide it?
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.
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?
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.
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.
So horrifying to read this news. He and Velma are in my thoughts.
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.
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?!
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.
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.).
I know Scraps from The Well; I'm hoping for the best for him and Velma.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.)
By any chance, is Scraps a member of SFWA? Probably not or the Emergency Fund would have been mentioned already.
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).
#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.
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.
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.
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.)
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
Victor @87: Damn, that was beautiful.
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.
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.
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
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.
Bedside manner FTW!
I'm glad there's an excellent nurse on the scene. That makes a huge difference.
#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.
I don't buy it either. But I'd especially like to pop that doctor one in the nose.
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.
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.
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.
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.
Thank you so much for the updates, from Ken and I.
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.
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...
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.
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?
@ 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).
Can someone in New York punch the doctor for me? Thanks.
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.
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.
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.
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.
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...
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.
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.
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.
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.
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.
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.
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.
Velma... Again, and never enough, my best wishes to Scraps and you.
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.
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.
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.
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
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