On the mend
The good news is Mary seems to be a bit better. Her reduced dose of Amantadine has made enough of a difference that she has been able to say a few words to us; her concentration is improved and her focus is back.
But we’ve been through this many, many times. And it could happen again
soon. A cold, slight infection, a change of medication could plunge her into a
place that looks dark to us, is misery for Mary. We could count all those
downs if we had to; if we were forced to account for changes in her condition
we’d just have to flip through a pile of
black day-timers.
Paul has kept meticulous diaries since Day One of this journey. He is
our official family chronicler, only feeling the urge to count out his days in
his middle age. He’d be the first to stick his hand up when the late Ruth
Clark, editorial assistant to the City Editor, strolled about the Toronto star
newsroom handing out the thick daybooks.
Every year, pertinent information would
be carried forward into the new tome and life would roll itself out on the
pages. We have a marvellous record of our lives, not in detail, but in
highlights. And because no one can read his handwriting, nor would you want to
try, this collection seems destined largely for his own perusal. His scrawl is
a nightmare that has been misread and misconstrued by many who’ve been
recipients of his notes or messages.
Email has saved him in more ways than
one.
His collection holds holiday plans,
family dates, doctors’ appointments, plays we’ve seen, symphonies we’ve heard,
the names of airports where we’ve waited or landed, flight numbers, phone
numbers, hotel confirmations, vet visits, inoculation dates, people he’s seen,
people he hasn’t seen, baseball scores and other sporty-type stuff I don’t
understand. It is a concise list of
times and places, actions or events he believed, at the end of any day, were
pertinent. And the last five diaries contain an amazing story.
They’ve become a crucial monitor
for us – were even submitted to the College of Physicians and Surgeons at one
point. Paul has recorded the ups and downs of Mary’s brain injury, the doctors’
quotes, the misquotes, the good news and the bad. He has underlined the contradictions and misinformation.
But most of all, he has counted the days. And he’d remind us of the number of
days that we had travelled down Brain Injury Road: “We’re at Day 635 … Day
1,000 … Day 1,525.”
A few weeks ago, as we sat having coffee,
he announced that it was Day 1,819 and that he was going to stop counting.
Maybe that’s a sign. For Paul, counting the days was a measurement of the
amount of time he’s been in pain without the daughter he so adored; the number
of days that we, as a family, have been in pain. It was one of the ways he dealt
with the trauma and was able to assemble his perception of Mary’s
incapacitation in the long weeks and months that followed her injury: Some of his scribbles read: “Mary tried
stairs with help in physio.” “Mary’s g-tube fell out – again.” “Meeting with
lawyers.” “Dr. xxxxx said any sort of
recovery might take up to 10 years. Maybe.”
Every
day for the first few years: Then only when something happened. Good news and
bad.
Sometime during Mary’s first go-round at a Toronto rehab facility, six
months after the initial brain injury, a physiatrist (a doctor who treats
individuals with brain injuries), told us it would take a very long time for
her to attain any sort of recovery. And that recovery would only come with a
steady and reliable stream of rehab and physio, which she has never been able
to get.
That’s been the bad news.
But she would, this specialist said, have
a quality of life – in time, maybe ten years. That, of course, was before the
second and third rehab attempt, all of which ended in tears and hasty ambulance
rides back to hospital with horrific urinary tract infections that left her
nearly comatose.
While the good news - and we are
often reminded of it by people who really haven’t a clue as to what’s going on
- is that she’s alive, the bad news is what it takes to keep her alive and try
to keep her comfortable, understand her needs, what she requires to stay alive.
So we’re in a good news state right now.
She has rebounded, although we have no concrete idea as to why she took this
temporary plunge or what caused it. It could have been altering the drug dose,
it could have been a cold. It could have been something else altogether. Mary’s awareness, and perceptions of life
around her, is up and down. At the lowest of the downs, when she seems
disinterested and is crying and unable to concentrate, we despair. More bad
news. It’s at these times – and there have been many - that we sit and have The
Talk, which is the one where we face reality and wonder just how long Mary will
actually live. We step out of our ‘forge on’ mode and indulge in the worst-case
scenario. I suppose, in a way, we are preparing ourselves for the worst news,
for a day when she doesn’t emerge from one of these bad times.
Truth is, we sit at Year Five now and we’re still waiting for the big
breakthrough, the really good news. Those diary entries of Mary trying the
stairs were when she did get steady OHIP-covered physiotherapy, when she was
making strides to recover. The bad news is you can’t have daily physio outside
a facility because the cost is prohibitive. Even twice a week is a phenomenal cost.
Yes, Mary can walk around the block in
her huge walker, but it’s painful and slow for her. Both ankles are strapped
into brace supports. Each infection, each setback costs her whatever she has
gained and she has to start all over again. That’s really bad news. If she
isn’t on her feet every day and using what she does have, her sense of balance goes
off.
Yes, her intellect is intact, largely,
and she understands and takes part in her small world when she’s not utterly
exhausted from sitting strapped into her wheelchair. And yes, fifteen minutes
after she returns from walking in that walker, she has forgotten she did it and
is probably wondering why she’s so exhausted.
So the bad news – even more of it – is
that she requires massive amounts of cognitive and physiotherapy. So we plug
away. But we’re not professionals.
Mary understands more than we realize – good news? – and for brief
periods is aware of our desire for her recovery. She has one parent who holds
out great hope for her while the other is fairly resigned and skeptical. There
has been such a plethora of bad news, the resigned parent – me – has come to
accept the worst and believe the best is unattainable. It’s just the way things
have gone. It’s what happens in a
long-term crisis; there’s a slow realization that there may not be a happy
ending.
Paul, the diary-keeper, still carries
this flame of optimism that he’ll walk in the door some day and Mary will greet
him with her old “Hi, Dad. Where have you been the last two days?”
Anoxic brain injury is the unknown. A book written by Norman Doidge,
M.D, “The Brain that Changes Itself”
(Penguin Books, 2007), discusses ‘Stories of Personal Triumph from the
Frontiers of Brain Science’. It is a wonderful book, but it you look up anoxic
brain injury you will find two pages. Two Pages. That’s it.
Those pages, mind you, are inspirational. They record the case of a New
York woman who was strangled in Central Park. Her oxygen deprivation was
sufficient for doctors to believe her hippocampus had been damaged. Five years
after the event, with “a severely damaged motor cortex” and “severe memory
problems,” she was still in a wheelchair with “wasted muscles”. Doidge writes
that she was “assumed to be beyond help, since anoxic injury leaves behind vast
amounts of dead brain tissue.” Clinicians, he writes, assumed the brain could
not recover from this.
Still – good news here – the patient
began to receive “the vigorous rehab usually given to those in the first weeks
of their injuries.” (This early work is crucial, we were told, for any real
recovery for Mary.)
In the end, the New York patient was able to recover enough from this
rehab, Doidge writes, to go back to school and get a job. Although she never
fully recovered, he reports the improvement in her quality of life “was stunning.”
We need that kind of stunning.
Realistically – barring the miracle of vigorous rehab such as this - I
don’t think Mary will ever recover enough to enjoy a really good quality of
life. She needs a framework for that – and that framework begins with her
memory, with a lot of therapy, different kinds of therapy over a long period of
time. And she needs constant reminders of the work being done with her.
She has never had the chance to experience
that level of rehab.
I recall very well the day her nurse
practitioner said to me: “She’ll never walk again, Heather, I’ve seen the CTs and
the damage.” That was the kind of bad news that shaped my perception of things
very early in this crisis. To this day it sits within and darkens the shred of
hope I have left. But at the time I
thought, sure, and the idiot down the hall told us she was vegetative and
should be put in palliative care after Isabella was born.
Another hospital staffer mused out
loud one day. “We’re amazed you still come by every day to visit Mary, that
you’re still hanging in. A lot of families would have given up by now.” Really?
Who abandons their children when they need you most?
Really?
This is the attitude that confronted us in the hospital. It still
affects me.
The positive and the negative, the good
and the bad, the hope and despair; it’s what happens when you’re caught up in
an impossible situation. I like to think I balance Paul, and he balances me.
Maybe that’s good news. But it isn’t easy; while I stand squarely up to reality
and hold the skeptic’s card, Paul holds out the hope sign. Neither of us is
right, neither of us is wrong. It’s just how people cope. Deep down, I want to
be proved wrong. Paul dearly wants to be proved right. Very early on in the
crisis, when it was tearing at our hearts and souls, we made the decision to
remain in harness, to stay the course and take turns steering. So far, so good. That’s good news.
The bad news is Mr. Brain Injury
holds the whole deck of cards and he hasn’t even begun shuffling. We’re still waiting. And so is Mary.
