[DWJ] Dorian update

Hallie O'Donovan hallieod at gmail.com
Wed Nov 9 16:11:11 EST 2016


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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