[DWJ] Dorian update

Elizabeth Bentley ebsln at icloud.com
Thu Nov 10 04:21:07 EST 2016


Thank you so much. I had been wondering. This is such good news.

Elizabeth

> On 9 Nov 2016, at 21:11, 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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Elizabeth Bentley BA MCLIP
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