[DWJ] Dorian update

Gili Bar-Hillel gbhillel at netvision.net.il
Thu Nov 10 03:25:48 EST 2016


Thanks for this update. Has me quite teary-eyed.
I haven't shared this before because it seemed so pessimistic, but my
brother-in-law had similar injuries to Dorian's following an accident on
his motorcycle (I remember the phrase "open book pelvic injury") and so
everything to do with Dorian's recovery has extra resonance for me, as a
"might have been". Sadly, he lived for only 9 days after his accident.
Trust Dorian to be a medical wonder with her reading abilities. I am so
glad she laughs at cat stories, so glad she can tell Patrick she loves him,
so glad she has a friend like you.
Gili

On Wed, Nov 9, 2016 at 11:11 PM, Hallie O'Donovan <hallieod at gmail.com>
wrote:

> I'm guessing a lot of people will be feeling in serious need of some
> cheering news today, so here's a long-overdue update! Dorian is currently
> in the National Rehabilitation Hospital, where people who've had strokes or
> brain and/or spinal cord injuries get 12 weeks of pretty intensive therapy.
> The consultant is the one who supervised her care while she was in the
> primary care hospital, which is great because he knows her in all her
> unique glory quite well by now. She's made huge progress, surprising the
> consultant and therapists, but not her family and friends, by recovering
> the ability to read before she could speak or understand spoken language.
> This changed so much, obviously, although she's still not quite at the
> stage where she can read longer books, nor can she turn the pages of a book
> or e-reader independently. Still, it let us communicate with her, which was
> brilliant.
>
> After her 12 weeks (mid-December), she'll probably be going to one of two
> long-term care centres, and eventually she should be able to live at home,
> with some assistance. Their house can't be adapted for her needs, so the
> plan is to sell it and buy another which can be fully wheelchair-accessible
> and so on. That can't happen until there's a settlement on the court
> case(s), so probably looking at a year or two. Sooner if Patrick can find a
> way to make it happen sooner!
>
> She's made enormous progress, as I said, but there are no guarantees about
> whether she'll have other significant jumps, or continued slow recovery in
> all areas, or if this is about where it'll remain. The areas governed by
> the frontal lobe, like short-term memory and problem-solving/initiative,
> are still quite badly affected, but she's already made prognosis-defying
> leaps, so there is good reason to be hopeful.
>
> That's the report, and just some cheerful stories to finish, in case
> anyone's interested in hearing some of the high points of my weekly visits
> with her over the months. Patrick guessed that she was reading just before
> Christmas last year, when he was sitting beside her and writing in a
> journal that he kept there for observations. He noticed she was looking
> over his shoulder and was obviously tracking the words on the page. He told
> me about it in a casual 'She can read, you know' tossed-off comment, to
> which I responded with anything but calm! We started keeping a notebook
> there to write to her, and trying to find the easiest way for her to
> respond to us. At first she wasn't able to point to things at all, so we
> usually opted for 'lift your arm' or 'nod your head'. The therapists didn't
> believe she was really reading, but after a few weeks we all knew beyond
> any doubt. One Friday afternoon her father, Patrick and I were all there
> and brought her to the cafeteria. I was on the outside, so when Patrick saw
> the consultant walking towards the exit, he sent me running down the hall
> calling after him. Good man that he is, he expressed appreciation for being
> flagged down late on a Friday afternoon as he was heading out of the
> hospital (far on the other side of town from the NRH, no less), and came in
> to talk to everyone. Patrick asked if the therapists had told him Dorian
> could read, which got a slightly skeptical negative answer. When he saw her
> respond to what Patrick wrote for her to do, he said 'That's astonishing',
> and a minute later 'This changes everything'.
>
> By the Monday morning, the physio, OT and speech and language therapists
> had already been informed and were writing things for her instead of trying
> to talk to her - and were, of course, delighted with how much easier
> communication with her was. She wasn't speaking, but a few times after that
> I asked her if she could say 'no' instead of shaking her head. She
> wouldn't, but did nod in agreement that she might be willing to at some
> point in the future. One Friday I was there and Patrick, who usually came
> in later on Friday afternoons hadn't turned up, so I texted to see when he
> was expecting to be in. Then I figured I'd ask her if she could say no
> again, and she made an unmistakable nuhhh noise. And of course there was
> NOBODY I knew around, not even one of the regular nurses or health care
> aides. She did it again, making a much clearer 'no', and then said 'yes' as
> well. Finally I saw the ward manager at the nurses' desk, so I went over
> and told her Dorian had said no. Naturally she assumed it was shaking her
> head, but when I explained, came right over and Dorian did it on request
> again. Pretty soon there were 7 or 8 nurses gathered to hear her speak,
> some in tears. (The miracle was that Dorian didn't object to demonstrating
> for everyone repeatedly, and yes, I did thank her every time!)
>
> The ward manager went off to try to see if the consultant was still in the
> hospital (Friday's his day over in Beaumont) and Patrick happened to phone
> me instead of just texting, as he normally would. I put the phone on
> speaker and wrote again asking her to say 'no' for him, which she did, but
> he didn't get it was Dorian. (I did a lot of excited squeaking that day, of
> the 'NO, that was DORIAN. SPEAKING' variety.) We were talking a bit about
> it, and I scrawled asking her if she could say 'I love you' for him, and
> she did. He'd phoned to tell me he was going away for the weekend, and said
> after that he was walking through college with tears pouring down his face.
> Not bad for the first time talking in well over a year! She still doesn't
> speak very much, and mostly when prompted, but some days it's easier to get
> a spoken answer than others. Some of this may be related to her having lost
> all hearing in one ear, and they'll be evaluating the likely usefulness of
> a hearing aid now.
>
> Her parents were away the week the bed opened up for her in the NRH, so I
> went over to help Patrick with the move. She was pretty miserable, as not
> only had she been in Beaumont for 18 months, but the lack of short-term
> memory made a huge change like that even more stressful. The consultant had
> told the nurses I was allowed in outside of visiting hours, and Patrick
> couldn't get in until after lunch, so I turned up in the morning the day
> after she'd been transferred. If she hadn't been *so* miserable, I'd have
> snapped a picture because her friends and family would have been very
> amused to see her propped up in bed with a gossip magazine in front of her.
> It was a sweet effort but NOT her preferred reading material. Funny stories
> about cats are, on the other hand, and her mother said the first time she
> read one about a neighbour's cat, who'd 'caught' a seagull and was seen
> being carried off in its claws past the kitchen window, she laughed so much
> they were afraid something was wrong. She got a real kick out of her
> glasses getting caught on Patrick's jacket yesterday when he was hugging
> her goodbye. She gives wonderful hugs, and it never gets any less special.
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