Waiting can be a pain in the ... tooth

                                                       
                                                                Mary: Brighter and more alert

      We’re playing the waiting game again. It grates on your nerves and has you reaching for the phone two or three times a week to chivvy things along, if that's at all possible. We take turns calling the concerned parties: “I did it yesterday, your turn today.” A grimace, a sigh; it all seems so fruitless, this chasing bureaucracy.

      Except for a spell wearing orthodontic headgear for 20 hours a day when she was 11 years old, Mary has always had exceptional teeth. No cavities, huge bright, white smile. A cleaning twice a year would do it for her and she’d bounce out the dentist’s door and forget about it.

        But she now faces a dilemma. She has cavities.

        Her diet, since she came out of the coma, has been restricted to soft food, which looks dreadful but smells great. If it’s all you can manage, you knock it back without a thought. Who’d believe mushy food and no sweets could wreak such havoc? Those cherished moments of wrangling with a banana or piece of fruit are rare for Mary, but we make sure she does get one thing each day: Coffee. She adores her coffee. Last I heard, plain old coffee doesn’t cause cavities.

        About six weeks ago, Mary had her three-times-a-year oral hygiene check-up, which she patiently endures and is quite able to tolerate. Due to her swallowing difficulties, the only thing the hygienist has to do more often is suction her mouth to keep the detritus from sliding down her throat. Due to weakened muscles, some spasticity and God knows what else – we still can’t find out what  – she has quite a difficult time eating and swallowing. It takes time, and anyone helping her to eat has to have the patience of Job. Complicating the matter; Mary loves to eat, although you’d never know it when we stand her up to her 5’ 8” height. She’s rail thin and is one of those women who can cross their legs while seated and wind them around each other like noodles. (A side story here. This habit has, in the past, caused ankle swelling. Pressure socks are always on hand and the nurse has recommended their use when the first sign of puffiness occurs.)

        Dental hygiene – even when she was in hospital and visited every three months by a hygienist – has always been at the top of Mary’s list. She has great teeth, yet even now, aware that she can drool at times, she’ll hold a handkerchief to her lips to keep people from noticing this unfortunate symptom of her brain injury.

       Mary has her teeth brushed by PSWs who, while gentle, can’t always navigate Mary’s stiff jaw and mouth. She tries to help when possible and it is imperative, at some point down the road, that Mary gain enough hand co-ordination to do things like this for herself.

          And we’re aiming for that – among other things.

         But something has happened: While she got an all-clear five months ago, she received a thumbs-down six weeks ago. This most recent trip uncovered cavities in a back molar and quite a bit of gum irritation and redness. We were told it would be best if the work was done much sooner than later. So our dentist booked her in for the work.

         For us, it would be a simple thing, an hour out of our day, a frozen mouth for a few hours, a lecture to do more flossing, (which she can’t do on her own), instructions to do some vigorous brushing on the molars and to exercise more vigilance. 

         Several days later, and after much consideration (he’s known her since she was 7), the dentist called us and expressed some concern over doing the procedure. There are risks of dealing with someone like Mary, who cannot signal if she is in trouble, who has spasticity problems in her neck and jaw.

         So, a simple filling or two? Not so for Mary: We were told, due to the high risk and swallowing problems, Mary would need a full anesthesia and intubation. In a hospital.

         We were referred first to a specialist dentist who does anesthesia in his high-tech office. He assessed Mary and said he’d want to have more staff on hand to handle her if anything went wrong. “I’d feel happier with that button to push if something happened.”

         He was apologetic and kind. He referred her on an urgent basis to a hospital where a staff dentist works with people like Mary. That was weeks ago.

         The past week has been a game of call and wait as we negotiate between the dentist who referred her to the hospital and our dentist. It’s getting ridiculous.

        My first inclination, since Mary doesn’t eat hard food, would be to simply pull out the damaged tooth and let her get on with it. Who needs the risk of anesthesia for a filling? Not to mention the side effects of the whole procedure.

        But we’ll wait this one out and go with the expert advice. (Hasn’t that always worked well in the past five years? Hell, no.)

   

        The upside of the past few months for Mary has been her brand new wheelchair, a veritable cobalt blue chariot, and increased memory and cognizance. It is as though she has looked around and noticed a world beyond her four walls. She fights to communicate more. She comments on funny things. She reads what she can of her newspaper every day. She’s even walking better in her big walker.

        In an attempt to spur on this spurt of awareness and memory, we decided Mary needed a long, slender table to help her co-ordinate activities and aid her eating and drinking. We ventured into the confusion of an Ikea store and wrestled huge boxes off shelves onto a cart (Tylenol for Arthritis does what it says, by the way), including a rather stylish office chair (which I lusted after briefly) for the PSW to sit at and help with feeding and other activities.

        The whole thing about brain injuries is to get the person back to doing as much as they could before – on their own and with practice and repetition.

        “Let her follow her own instincts,” advised the neuro-physiotherapist a few years ago. “Don’t jump in and do it for her. She can figure it out.” And it’s true. We’ve run with that advice. The phsyio would hold her up and hand her a cane. As they walked, he’d let Mary instinctively move the cane to support her weight as she moved her legs.

         We do have a body memory and it does come back, with encouragement.

          Bob recently found Mary’s thermal coffee mug that she’d carry on the subway to work. When he brought it in, she immediately picked it up and tried to drink out of it. She recognized it and knew right away that it was an old friend. Now we give her coffee in the mug and let her go to it. It aids her co-ordination and muscle control and it’s familiar, part of her past, something she used daily and which brought her some joy. Heaven knows, we can’t find enough of that for her.

          It all seems so simple, does it not? Lifting a mug of coffee? Getting a tooth filled?

          For people like Mary, it’s just not so.

    

    

                                                            Rediscovering her coffee mug.

This blog is updated about once a month now, as developments occur or new treatments are found for Mary.

Coping with the fallout

                                                                    Mary on Monday, May 24


      

      There’s really only one way to cope with a tragedy of this magnitude. It doesn’t go away and it only gets better if Mary gets better – and that’s been slow in coming.

      So we deal with much of the situation on a daily basis by using as much humour as we can muster, by finding the funny in the absurd. And heaven knows, this has been one strange journey for us all.

      We do it – find the funny – because Mary had a fabulous sense of humour. She found the most ridiculous things hilarious and had a fairly balanced way of dealing with life’s problems. She had a lot of common sense, a quick intellect and a marvellous sense of funny.

      We take our cue from her.

      As the spring has crept in, Mary’s well-being has improved, even if her memory hasn’t. We brought her to our home this week, walked in the woods, looked at the fledgling blooms of neighbourhood gardens and sat her up to the table for dinner. But not before she nibbled on potato chips (a first) and quite adeptly drank ginger ale. If that didn’t surprise us, we were amazed when she grabbed her fork and did her best to feed herself for most of the meal.   

      She was amazingly well and was communicating above her usual level. Mind you, on the way home she tapped out to Bob on her alphabet sheet: “What did I eat for dinner tonight?”  (Still, we’re finding more and more, if we prompt with a letter or word, she will recall names, places and events. We hope this means that cognitively, things are improving. Maybe all those games on the iPad are working, all the prompting, cajoling and repetitive reminders.)

      Best of all, we laughed, Mary sniggering at our sarcasm and understatement, bad jokes and observations.

      We take it as it comes now. But it wasn’t always so.

    

      As with any disaster or loss that befalls a family – and I’m talking major accidents and death – there is a horrific period of mourning, an anger and then some sort of resignation and acceptance.  It can take years, I’ve been told. That person is always missed, there’s a huge hole in the family structure, their history and life story.

       But a death in the family usually brings closure over time. We have no closure. We’ve had people who’ve lost loved ones say to us, as they observe Mary in her chair, “Well, at least we had closure.”

    It may be tragic, horrid, unforeseen and unfair. But death is closure. And the bereaved, I was reminded by a health professional a few weeks ago, do move on – reluctantly, with part of their souls gone.

       We’re still trying to cope, and that isn’t easy. We make it up as we go along as best we can. There is really no solution, as I was reminded by that same health professional.  We are still mired in trying to accept a desperate situation while dealing daily with the fallout.

       Every time we look at Mary – which is most days – we are reminded that there may never be a solution to her problem or a way to get her back. And God knows, we’ve tried.

       We are constantly reminded of one doctor’s failure to obtain the proper vigilance and care in an ICU for a pregnant, post-op, neuro-patient. The confirmation by the College of Physicians and Surgeons that this was so has gone a long way to helping us cope. We know now, through consulting with expert witnesses, more of what happened that night. That helps, too. It doesn’t mitigate the anger, or the overpowering sense of disbelief, but it does help even though it’s likely to be as much as we’ll ever know.

     (Unfortunately you can’t sue a resident doctor on those findings, even if those findings are given by a professional board of his peers.)

       It’s a medically sordid tale still mired in legal wrangling.

       So. Everyone else involved that night in the situation that caused the tragedy has moved on; the resident, the nurses who took part in the Code Blue (“people die, what can I say?” one said to me when I expressed my horror of the situation), but we are still trying to find closure and it’s nowhere to be seen.

      An apology or lawsuit might have helped us to come to grips with what happened to Mary, but lawsuits cost law firms huge dollars, take years and a lot of work. If it’s not cut and dried, you’re out of luck; and doctors and hospitals have deep and well-stocked war chests.

       So you cope as best you can, taking things a day at a time. But our lives

 have changed beyond belief.

      Moving on? That will take some work, even though we’re not alone in helping to care for an brain-injured loved one.

      There are many people like Mary out there behind closed doors, in homes and nursing facilities. That much we do know. Pushed into the medical tragedy corner and hanging out at various places that deal with such horrors, you meet people who’ve also been wounded, their loved ones struggling with the things-that-happened-that-shouldn’t-have-happened while going about their lives. We meet people who have suffered traumatic brain injury, had hemorrhages, strokes, clots or tumours, falls. We commiserate. Swap tales. It’s not much fun.

       There is always the fear of some program or other being cut, of having to pay ever more for therapies and help. And finding that help, and the right programs, is another situation altogether. The more brain-injured the individual, the harder it is to find health workers willing to take on a tricky patient like Mary.

      It’s a conundrum. But you keep going.

      There has been a lot of fallout.

       When this happened to Mary five years ago, our disabled son (Mary’s twin), was so overwhelmed by the loss he moved back in with us temporarily. When he finally returned to his own apartment, his loss was still so great, he returned to home base and has remained with us to this day. He’s a lost soul without his social worker twin, finding his parents a bit fuddy-ish and not quite up to date in all things. Still, we’re his port in the storm.

       And we manage to keep him laughing.

       Somehow, the three of us muddle along, missing Mary, but looking out for better days.

      We’ve made dreadful mistakes since this happened: we’ve been panicked, frustrated and fearful and haven’t always been thinking straight. We now hold moratoriums on huge decisions; three heads are better than one. And anyone’s head is better than our three, it would seem.

      Coping often comes at a cost.

      So a few weeks ago, when I visited a specialist to try and help me find a way to move on and cope better –  a lovely individual, but with no answers – he simply looked at me and said: “Mary could live a long time. You’re just going to have to put the situation in a compartment and carry on with your life.”

      My life. It’s missing someone I love dearly; someone who is still here, but not here, who may never be here again, but who still looks at me and tries to be here for me, for all of us.

      Guess I’d better get busy constructing that compartment. Wood? Concrete? Or, perhaps a filmy structure of dreams and wishes,  memories and hope.

Mary is stable, fairly healthy and still having vigorous private therapy; there are tentative plans to increase some therapies, if possible.

I will be updating this blog from time to time, probably monthly, as things change or improve in Mary’s journey.

In the meantime, we will continue to do all we can for Mary. Thanks for reading!

   

Struggling to be heard

  

                                                    Mary and her twin brother Alastair indulge
                                                           their love of coffee two weeks ago.
     


      Mary loved to talk. Boy, could she talk. And talk. She’d phone us a few times each day to fill us in on what was going on, to tell us funny things that had happened to her at work, to moan about things that weren’t going right … or, to just talk. She was the Queen of Communicators. You knew exactly what she was thinking. She gave outreach talks at centres for the disabled, was eloquent and none too shabby in the writing department.

      She called us once – it came through on the car phone – laughing hysterically to tell us she’d just walked down Yonge St. with a schizophrenic client who’d yelled her name over and over at the top of his lungs.

      “Oh God, how embarrassing,” one of us said.

      “He can’t help it, not his fault. His meds aren’t working,” she said.

      Compassionate: an advocate for the hurting, the wounded, the people who have a hard time in this life. She understood.

        It has been more than five years since Mary has been able to really communicate. The first sign we had that she was still there, still Mary, was on Mother’s Day, 2009. She was very pregnant, essentially still in a coma, but opening her eyes at times and trying to look around. She was in an ICU unit and monitored closely –  the plan to place her in palliative care once Isabella was born by C-section still very much an option.

      I asked her if she could smile for me – a daring thing as she was only in what they called a slightly heightened state of awareness. Could she understand me? It was worth a try. I noticed the nurse watching closely as I asked her again, “Mary, can you give me a smile?”

     Eyes barely open, she moved slightly in the bed and the corners of her mouth lifted and stayed that way. It was a start. I was ecstatic – to the point where I kept saying, “smile again for me.” She would have been rolling her eyes at me and sighing if able.

    Five years:  Imagine wanting desperately to communicate and you just can’t; the muscles in your throat become taut, your jaw seizes, your mouth just won’t move to form the words. That’s Mary. And the sound she makes, instead of speaking words, is a constant moaning sound that lifts and falls, breaks and stops. She so desperately wants to talk as quickly and fluently as she did at one time – and she can’t.

     It was always important for us to be able to understand Mary, to know what she was thinking, feeling, wanting. It became even more crucial this past autumn when a psychologist determined Mary’s intelligence is fairly intact. When he quizzed her about a hypothetical situation and asked her to define it, she croaked, “patronization.”

    When prompted, surprised, upset or angry, she can squeeze out a word or two that is completely comprehensible.

     There was an incident a few years ago, while still in hospital, that convinced us that Mary could speak if only she could get all the parts that comprise speech to work at once. We were visiting and talking about religion, something we don’t usually discuss. A staff PSW was sitting at the end of the bed, listening as Paul and I were admitting that we really couldn’t grasp the idea of belief anymore. Mary’s head came up and she said, as clear as day: “I still believe.”

     We were utterly amazed. Paul said to her: “Well, I guess if anyone’s seen the face of God, it’s you.”

     These periods of speaking clearly to us are few and far between. And why? We don’t know. We can’t get any answers. We know there was no damage to her vocal cords as a result of being intubated for an extended period of time; they did tests at our request.

   But we do know this one thing: Mary has a great desire to talk. She could talk the hind leg off a donkey (a dreadful cliché).

    She now fights like mad to work all the muscles that help us speak, including the proper exhalation of breath. But she just can’t. It’s a matter of the brain damage causing spasticity in the face and throat, the brain unable to give the right messages. But she tries. And tries. And yes, there are words buried in that moan and we can, incredibly, sometimes make out some of them.

     A few specialists have told us that she may never speak again, that the damage to her brain is so great, her memory so crappy that she will never regain the ability.

    And yet. Tell her something surprising and she’ll pop out a full short sentence and leave you gaping. How can that be? Why can she not consciously speak and yet speak when she’s distracted or surprised?

       In the early days, when she was still in hospital, we got Mary on a rehab list to have her equipped with a Dynavox. It’s a clunky machine that attaches to the frame of her wheelchair and works with Microsoft. You can send email, program sentences and phrases and do all kinds of things with it. But, due to her questionable eyesight, Mary’s Dynavox came with a fairly large keyboard, which was then covered with a piece of thick, clear plastic with holes. She was supposed to put her fingers through these holes to reach the correct letter of the alphabet.  

      It was useless, but we rented it for a year – better than its $10,000 cost. And she persisted with it. We programed in phrases, names, places and her bio. At the push of a button she could ask you how you were, she tell you what she wanted, she could give you her resume and work experiences. It was brilliant. But she just couldn’t get used to it.

     Mary has a certain amount of spasticity in her limbs that causes no end of concern and panic, at times. She was getting Botox injections in her arms to try and help this, but the last few times she’s seen the neurologist, her arms flop when he lifts them. He can move them, raise them, flex them. And he’s decided she doesn’t need it. And she probably doesn’t.

      But – and there’s always a but when it comes to Mary – ask her to use a finger to poke out a message on the Dynavox keyboard and she hits everything but the right key. Her arm shoots this way and that. It’s not so much spasticity, we’ve been told, but dystonia. Whatever it is – the lack of co-ordination and her eyesight put an end to the Dynavox.

      We then tried various excellent programs on a large iPad. Again, while it is a marvellous device for disabled individuals, it was useless for Mary; her hand would drag across the surface as she attempted to tap out a message and she’d end up frustrated and in tears.

     What has worked is a laminated alphabet page and we have several of those lying around. It’s primitive and although it works, it still doesn’t enable Mary to say more than a few words at a time.

      But we’re still trying for something better, a light box that the psychologist believes would really help her. “It’s not Mary, we just haven’t found the right technology,” he assured us. She is now officially on the waiting list for a light box, which is the type of device used by Stephen Hawking.

       The wait could take 18 months.

       This is the kind of thing that drives the parents of disabled children crazy. It’s the waiting. And waiting. There simply are not enough resources out there to help the disabled.

        Meanwhile, the iPad now holds short stories Mary can listen to as well as a number of cognitive brain games. Downloading a novel would be futile as her short-term memory loss wouldn’t let her recall what was going on in the book. It’s really too bad because she was a voracious reader.

       So we wait. And we play those cognitive games, and memory games, and we do exercises with Mary and remind her to move her mouth when she tries to talk.

       Just as dementia robs families of loved ones, brain injuries wipe out the person you knew. Gone is the extra-huge smile, the rapid-fire wit, the quirks and intelligence that comprise a whole personality. You are left with a shell, a horribly hurt brain that doesn’t allow your family member to skip and run as they used to, to laugh uproariously, to bustle about, to tell stories, to joke, to sit comfortably, to remember the times when … you are left with remnants.

      It is from those remnants that you try and mend the fabric. They’re odd-shaped pieces that don’t fit anywhere, don’t connect to other bits. So you move them about, try this way and that.  You work the bits that have some shape and you hope that by doing that you’ll tease other parts of the brain to figure out the pattern, to rewire, reconnect. And you watch closely.

       There are good days and bad. What we have discovered is that Mary – a whirlwind on two feet prior to her brain injury – needs a lot of stimulation, a lot of talk and conversation. She is bored just sitting in her wheelchair. She wants to be around a lot of people, that much is clear to us. She brightens up and listens when she has visitors, she taps out messages on her primitive laminated board. She tries to join in. She comes … alive, almost.

       So we hope. And we watch.

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.