The good news ... and the bad

      

                                                                    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.