December 27, 2008
Posted by Patrick at 11:42 PM * 86 comments
Our friend Soren de Selby gets released from post-stroke rehab for a few hours in a Brooklyn restaurant with friends.
That's Helen in the black-and-silver sweater, and Howard at the other end of the table, and Lydy in the lavender t-shirt. Howard and Helen and Velma did all the work of getting Scraps there and back again.
He's still got a long way to go and a lot of work to do, but it was a good day.
Weirdly, photos make him seem less impaired than he is, because one thing the stroke hasn't interfered with is his facial expressiveness. He's profoundly aphasic in speech, and eloquent (and well-timed) as ever with a raised eyebrow or a deadly straight-on stare.
He looks great, and plopping around with friends over the holiday weekend is probably one of those really big spirit lifters.
Scraps isn't profoundly aphasic, but he is aphasic. He makes meaningful speech, but he's only successful on some of his tries, and what he tries to say is a simplified and approximate fraction of what he wants to say. It's a lot of work for him to get it out. He sometimes fills gaps with mime and improvised signs.
However, as I'm sure you can see if you know him, he's still very much himself.
The phrase "profoundly aphasic" was stupid of me. All I wanted to convey was that he still has a lot of trouble talking, and it grieves him. The pictures of him smiling around friends don't convey that. I want those friends of his who aren't local to realize that things, while (very slowly) improving, are still hard.
It's so hard to articulate the right balance of realism and hope.
It looks like the rehab facility hasn't starved him - he looks pretty good (though as tired as I feel). And he has better T-shirts than I have.
This is great.
Scraps always has great t-shirts. I believe he's lost about thirty pounds since the stroke, but he was looking a tad middle-aged before it happened.
One of our kids' dear friends, a 3 yr old who has most of a brain tumor cut out 3 weeks ago, made it home late Christmas Eve. She gets to be in her own home and own bed for a week or so, untill she has to return to Seattle for the next stage of treatment.
It was very good to get the call that they all made it home. Best part of Christmas, really.
This is great to see. Happy Monkey, all.
I am so pleased to see that. Thanks.
Fresh air and friends! Not
the sovereign cure-all, but
a gentle healing.
This is good. I continue to hold Soren and Velma up to the light.
Soren's shirt can be purchased here. Warning: not responsible for any music that gets stuck in your head.
Fantastic news! Getting out of the hospital for a while like that can only be a good thing. We all struggle for the occasional word as we get older, but I can only imagine how frustrating that level of aphasia must be. Let's hope his recovery continues.
What a great post to find this morning! Yay!!
Made my sore throat and hurting ears feel much better just viewing those pix. I hadn't seen an update on Scraps in quite some time and was afraid to ask.
Jane
That is heart-warming and encouraging. Scraps looks happy in the photos, and that's a good thing. Thanks for the pix!
Allen @6:
The current rehab facility is not feeding him well, if we define that as "presenting food that he actually wants to eat" rather than "the plate contains significant amounts of things that can be legally defined as foodstuffs." But he is eating some of the dubious food they're offering, and in these pictures he's at a restaurant with food people actually want and will eat when they have a choice of where to get their meals.
He has lost significant weight, but not to the point where he's problematically thin, as I understand it.
I don't know him, but I wish him well.
To be precise, he's lost sixty pounds -- half in muscle mass, unfortunately -- since the stroke.
Patrick at #5 is right. There's a long way to go, and he grieves, and is impatient with himself, but he's there, very much so.
He had a great time, and told me that he hopes to see more people this week.
What wonderful pictures! I'm so glad he got out to hang, surrounded by friends. And Velma looks positively lit up with the joy of having him by her side. So glad.
That's wonderful! Here's to more and better days like this!
Just out of curiosity, does he have the same problem writing? And yes, I concur that in the photos he doesn't seem impared at all. No matter how frustrating his condition, it is great to see that gleam in the eye. I know non-stroke people who look far less alive and smart.
Wonderful! Thank you for the picture and for the good news.
I'm happy to see Scraps among friends and having a good time. Also hoping for his further recovery. Thank you for posting this.
Joining in the chorus -- huzzah! I'm quite sure the aphasia is frustrating. This is still much, much better than many options.
The best possible thing to see first thing this (still snowy and with ominous forecasts) wintery Sunday morning. Scraps was on my middle-of-the-night godbothering list today.
Wonderful! Thanks for the pictures--
Thanks for the photos, P&T. Glad to see Scraps having a good time with his friends. I can only imagine how frustrating it must be not to have many words, as expressive as he has always been.
Having food in front of you that's pleasing to the eye and the palate can't be overstated. Good on
Scraps and his friends.
John Scalzi's wife models that t-shirt too; I knew I'd seen it somewhere.
**happy dance**
Congratulations, Scraps and Velma! Keep up the good work!
Trouble remembering words:
I saw a video documentary of Ram Dass, who had suffered from a stroke shortly before the film was made.
Apropos of the fact that he was having trouble remembering words, he said "Words are the clothing that ideas wear when they go out."
I've gotten a wireless connection on the Naked Pink Molerat, up here in Soren's room. We just came back from a jaunt through part of Fort Greene Park, and around the block. I started to wheel him up the road to the monument, then realized that I had no idea how far I had to go, that there is no seatbelt on his wheelchair, and that going downhill with a wheelchair is not the easiest thing to do. So we're back, having a snack, and I'm realizing just how muscular my arms will become.
Soren says, "Aphasia -- profound. I cannot talk." He also just told me, "Don't go straight down --zig-zag; it's better."
(Soren says he took half an hour.)
...to go straight down the hill. He typed that parenthetical sentence himself. It took him ten minutes, he says, to type that with one hand.
As TNH describes it: He makes meaningful speech, but he's only successful on some of his tries, and what he tries to say is a simplified and approximate fraction of what he wants to say. It's a lot of work for him to get it out. He sometimes fills gaps with mime and improvised signs.
That's me in Dutch. I find it easy to imagine that in my sole means of communication. Difficult.
But it's good to see him out, about, and happy. Yay Scraps!
Yay Scraps! Good news, which brightened my, otherwise frustrated, day.
I'm so happy to see him out!
I remember being that aphasic, and it gets better for most of us.
This is a very good thing.
This is happy news! I've heard about your friend's tough medical journey second- and third-hand from many folks, and it's lovely to see photos of him having fun in the midst of the hard, unforgiving work of healing.
Best wishes to him, to his brave and tireless partner, and to all the friends who are helping him along this path.
Free Scraps!
I'll bet it is tough. I'm glad he's a tough bird, and that he's got good friends in his corner. It's been one small step for him, over and over, and it's nice he could step out for a nice time.
It's hard to explain, but whenever I read about his progress, I feel like I just had a near miss, like a car almost ran me down or something. Keep the good news coming, and thanks for all we've gotten so far. Scrap by scrap, he's coming back.
A Happy New Year to Scraps and to Velma!
oh, YAY. Being able to socialize, even imperfectly, in a normal place with friends--this is a particularly good milestone.
Patrick @#5: It's so hard to articulate the right balance of realism and hope.
I find "struggles with" and its ilk to be useful for this sort of thing. My sister struggles with aphasia, I battle depression, and so forth. The verb can be changed up or modified as needed to indicate how things are going without directly characterizing the degree of depression, aphasia, etc. I like this phrasing because it puts the focus on the fight; also because it leaves the subject of the sentence unmodified and has a fairly strong verb, and the questing beast is pushed to the end of the sentence.
Yay Scraps! What a nice piece of news!
Continued good wishes and thoughts comin' your way, Scraps and Velma!
Mary Dell @ 51: Oooh! I love that thinking!
Yay!
Yeah, I know. There's a long way to go still. But, still, yay!
That's great news! A long way yet to go, but still, progress is worth cheering for. And you guys are still in my prayers.
So great to see these faces all lit up like that!
(In fact, I was so struck by the expressions on all the photos, especially those of Soren and Velma, that I "saw" that top photo about two dozen times before I observed what Velma was doing in that shot :-)
Good news to take into 2009. May the recovery continue.
#56
You're right - I'd missed that also!
Happy news! Happy new year! I'll repeat what I have been saying: I hope 2009 will be filled to bursting with good and improving health for all of us.
So so good to see these pictures.
Brings tears to the eyes, but is good to see.
Yesterday afternoon, Soren called me at work to say, "Look at the moon!" Today, I'm going over to his rehab facility, so that we can watch it rise together.
I love this man.
That's wonderful. I can't really say how happy that makes me to hear.
Velma @ 61... I'm going over to his rehab facility, so that we can watch it rise together
Share the Moon and the sense of wonder of being alive together.
The moonrise here in the Netherlands was wonderful - a rich golden red full circle. Martin showed me it, and I called the kids out to see it.
Seeing the moon rise with your best beloved FTW.
Hi.
Scraps here. Anyone want to come hang with me Sunday, maybe take me out for a while, so Velma can have an afternoon off? Buzz her and let her know!
Hey, nice to see you on here!
Vicki beat me to it, unless y'all could use more company.
Soren! Good to see you posting!
I'm stuck on grand jury duty, which is taking an unbelievable amount of my time and I'm not allowed to say anything about it. I suspect, alas, that I won't be able to come by Atlantis until it's over.
Tip: Never, ever serve on a grand jury.
scraps,
wow, i'm so glad to see your voice again. my very very best wishes for your recovery, & a fervent hope you can continue to grace us with your textual presence here.
(for your question, unfortunately, i'm on the other side of the continent. & also have never spoken with you personally.)
Dude! You're posting! Yay!
I will be in NYC in a couple of weeks. I'll come see you.
Scraps, it's really good to see you posting. There haven't been a lot of points of light out there lately; your post is a magnesium flare.
I'll email you guys about logistics, and thank you so much.
I will note that the books he's asked for are Bridge of Birds (found), Nova (found), and The Einstein Intersection (not found, and there are at least two copies in this apartment, doggonit!). Things are getting interesting.
(He also called me to alert me to the news of the plane in the Hudson yesterday afternoon.)
And Teresa, he'd love to see you. Your name comes up in conversation a lot. (Sorry about speaking about you in the third person, Soren.)
I just brought the EEE in last night, so I don't know how often he'll be on line -- or even how often he'll want to be on line -- yet, so don't expect immediate responses.
I'm thinking of spending Saturday on Ellis, if it's a nice enough day. (If it's it all right for Velma, of cource.)
Soren, I'm so glad you're posting! I wish I could come up and talk, since I can't push wheelchairs, but I think about you often.
He's concluded that the EEE's keyboard, and Linux, are too hard for him to deal with, so I need to find an inexpensive Windows laptop with wireless. Out into the wilderness I go....
scraps! velma! you may be going through a lot, but let's be real. what matters is what's really important in this life. our values as people. our strength as humans. our national pride.
in other words: what really matters is that you guys look hot! keep postin' the photos. xoxo
Triffic News! Yet more steps forward. It's so good to hear of them.
Good luck with compu-searches.
Scraps! I'm late to the party here, but glad to hear you're getting out and about.
Soren just posted an essay, "Stroke", on his blog Parlando, that is the longest, most cogent piece of writing I've seen from him since the stroke. And it's the first time he's posted on Parlando since b.t.s., though he's posted some short things on his LJ. Well worth reading, and a real landmark.
http://www.deselbybowen.com/parlando/2009/03/10/stroke/
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