The long, slow awakening

    

            

                                                     Mary in Cuba, 2008

     During those 11 stormy, unpredictable weeks in ICU, as Mary’s pregnancy neared its end, Paul and myself, and Bob, took on roles none of us ever anticipated. We became a sort of unholy triumvirate, a cohesive threesome, each trying to respect the other, yet each attempting to make Mary’s life – and that of her unborn child – as comfortable and as optimum as it could be in such grim surroundings.

     It was a daunting task: all the more so because we were, essentially, totally and completely helpless. Almost as helpless as Mary herself, a machine controlling her breathing, a tube through her nose feeding her, various other tubes doing other things; we controlled nothing – not even the minutiae of our daily lives.

     If Paul became the steady hand on the rudder, ploughing ahead in a fog so thick we couldn’t see our noses, then Bob was a solid first mate, always there, working through an unexpected grief, a situation completely and utterly beyond his ken.

     As for me, I was more like a demented deckhand, everywhere at once and achieving nothing – not even the swab of a deck. I was unable to function, almost paralyzed with an unfathomable loss.

     And in these times, if you think you can lean on your spouse – well, you can’t, because they are going through the very same thing. Statistics and countless studies (too many to mention if you browse the web), show that many couples split when children become terminally ill and die, or suffer a life-changing illness. There’s a strain on the fabric of everything you’ve built and it becomes rent beyond mending.

     But you trudge on. And when you think you can’t take any more, that you’ve reached the very, very end of the road, that’s when you learn to lean on yourself. You begin to build some sort of rationale, a framework or perspective – call it an inner strength, if you will – that helps you get out of bed in the morning and get through the day.

     It weakened our union; but it strengthened it, too. You can’t watch a child you raised go through something like this without it having a profound and lasting effect on a relationship. You are bound, yet torn from the very person you love. You lose hope for your family, even as it seems you have to hold it together.

     And all of this – all this pain, turmoil, loss and confusion – is just because someone didn’t do their job properly one night, didn’t stop to think of consequences or possibilities; they just didn’t THINK.

     Sometime during those early ICU days, a lovely nurse turned to me and said, “I have two daughters, I can’t imagine …” It was meant as a comfort, but it hurt. I had one – and now it looked as though I would have none.

     The baby was monitored closely during Mary's ICU stay and we were invited, one particular day, to watch as a young woman, an Irish obstetrics resident, came to do an ultrasound. The baby at that point was an unknown. We didn’t know how she would turn out – considering the drugs used to paralyze Mary for CTs, the trauma of asphyxia (was the baby deprived of oxygen, too?), the fall – and it was something that got pushed to the back of our heads as we watched Mary hang between life and death, like so many of her roommates in that silent corridor.

      If we couldn’t wrap our heads around what had happened to Mary, Paul and I certainly couldn’t possibly, at that point, come to grips with the idea of a baby coming into the world as our daughter left it. Worse, after a ‘team’ meeting and the suggestion of putting Mary in palliative care was raised, I was haunted by the possibility of having to watch Mary die a slow and horrid death as the necessities of life were withdrawn, even as a new life was starting to thrive – a life Mary helped create.

     It was unbearable.

  

    The obstetrics resident – herself a mother of three children – looked at me as she readied her ultrasound equipment.

     She knew Alastair had cerebral palsy, had likely seen him labouring along the hallways with his unsteady gait – a solid, tall man, dark-haired and good-looking.

      “Do you have other children, Mrs. Archer?”

      “No.”

       I seriously thought she might cry. She looked away and began the process. Little hands, little feet. The baby looked good, she said. She scanned some more and a small recognizable face, snub nose, small chin floated into view. Dear God. The baby looked like Mary.    

      “Oh, look at that rosebud mouth!” the resident exclaimed.

       And suddenly, the possibility of this baby being born okay was a huge and overriding reality.

    

      One of the last names Mary and Bob had been toying with for a girl before the tragedy was Isobel. I don’t know where that came from. But somehow, in those horrid days, in a mire of despair and hopefulness, the three of us came up with the name Isabella. Bob managed properties near Isabella St., one of them was a co-op called the Grace McInnis. So Grace was added to the mix. She was Isabella Grace and she was suddenly as real as Mary.

      “It’s an odd situation,” an ICU nurse said one day, “because we’re dealing with two patients here.”

   

     Mary’s slow awakening was a long, drawn-out affair that kept everyone guessing. I think we talked the poor girl awake. I think we all poked and prodded so much – Mary didn’t like to be touched by strangers and wasn’t a big hugger or hand-toucher – that she rose up from whatever dark place she was in to tell us all to fergawdsake’s stop.  

       To my utter amazement, she did press my hand one day and I nearly collapsed. It was such a wonderful thing I kept asking her to do it. Bob would ask her to try and lift her hand and she did, a small gesture, but still an answer to a command. She opened her eyes one day, staring at nothing, a wide-eyed, blank look that didn’t alter when you passed a hand in front of her face.

      We asked her to blink twice. She did. We’d ask the stupidest questions – yes, all intelligence seems to flee in these situations – and she’d blink  – once for no, twice for yes.

     Blink, blink. We were overjoyed.

    We take so much in our lives for granted. We just overlook what we shouldn’t. Pure joy isn’t in the things you can buy, the material goods you gather about yourself, the car, the house, the job, the status you attain in your life. It’s all fleeting and it can all pass or be altered in the blink of an eye.

      I hate to say it but whatever it is you do – or think you can do, or want to do, isn’t really that important when it comes down to it. Someone else can do the job if you drop dead, someone else will have those things, someone else can achieve as much as you think you can. Those great individuals who leave permanent footprints for the rest of the world are so, so few.

    What is important is acknowledging the love of the people around you, their gifts, their lives and to cherish each day and the lives we are given. We have to stop and realize our ability to just live. 

     We forget, sometimes, to simply be.

     And I realized this the moment Mary blinked her "yes". I knew then that we might get our daughter back. And with those blinks, nothing I ever had, or thought I had, or wanted to have or to do, was as important to me as that moment my “vegetative” daughter acknowledged I was standing there, asking her a question. That was akin to snatching her from the jaws of death. I could work with that; having her acknowledge our existence – and hers – was life itself.

     You only have to listen to the sobs and cries of family members as someone in ICU – many of them trauma victims in their 20s – slip the bonds of life and go to … wherever … to know how vitally important it is to simply be.

     But it seemed Mary was on her way back. And it was wonderful. And it wasn’t going to be easy.

  

      First of all, we couldn’t convince the doctors that we were getting reactions from Mary. It’s involuntary, they told us. Those twitches in her cheeks were likely small localized seizures. They still had her written off – working with the order to only keep her alive until the baby could be born.

      Still, we persisted. We are getting a reaction, she is squeezing our hands, she will raise her hand if we ask her to, she blinks, for heaven's sake, we told them. And we told them again.

     No. And no, they said. They were still toeing the death line.

     And then one day we came in and one of the many doctor/faces – we gave them all ‘neuro’ nicknames like Neuro Nose, Neuro Clown, Neuro Pasta and even The Neuro Nazi,  because they all seemed alike in attitude and all seemed to hide their name tags – came to us and said, “Yes, we looked at her this morning and you are right. She is responding.”

     Later, one particular ‘Neuro’ came to us and respectfully said: “You never gave up hope. You kept at it.”

      Well, yeah. She’s our daughter, she’s Bob’s partner. What did you expect us to do? Believe you?

                                The respirator removed, Mary seems more at ease.

       And then we had yet another ‘team meeting’ in ICU, all of us squeezed around the table in that dreadful room.

     I had the audacity to ask for Mary’s tube – the respirator – to be taken out as she was quite capably breathing above the machine and able to sustain her own life by this time.

     The company line collectively reared its ugly head: “But that would make it more difficult for her to pass on at the end. It would prolong things,” said one sage, name-tag turned so I couldn’t read his name.

     “I’m not thinking of that right now,” I said, miraculously managing to hold back my notoriously quick temper. “I’m thinking of her comfort. So please take it out.”

     There was some kerfuffling along the table, some throat clearing, some hesitation. But the doctor who commended our hope came through and agreed.

      “We’ll take it out, Mrs. Archer. I tend to agree with you.”

     Three days later a bloodless hole was made – a tracheostomy – and now, instead of the thunk of the respirator, we had the hiss of moisturized oxygen and the sound of Mary coughing and coughing for the first time in weeks. Suctioning became a regular thing – sometimes so often I’d see blood in the tube. Bob became adept at clearing her throat, but we’d leave the deep suctioning to the nurses and look away as Mary’s body would go rigid and arch as it was done.

     Mary, by now, was looking around, dazed, and unseeing. Still, we had a bit of hope and out came the Rancheros Los Amigos scale again and we decided Mary was probably at Level II: ‘Generalized response regardless of type of location of stimuli.’

     Or maybe on a good day it was Level III: ‘Localized response. Blinks to strong light (well, no), responds to physical discomfort, inconsistent response to commands (well, yes).’

      One ICU nurse told me on the second evening she was on duty: “I swear she was tracking me with her eyes last night. I could see her watching as I moved around.”

     So that was good. Or, at least, better. The friends, her social work colleagues, her cousins, aunts and uncles all came in, ignoring the blips and beeps, the hissing and coughing.

    They all have great senses of humour, thank God, and used them as they talked to Mary. One friend, after a machine had gone off one day, leaned over her and yelled the OLG slogan in her face: “Gagnant! You’re a winner!”

     We upped the reading, the talking, the pedicures, the aromatic lotions. We just persisted because we had to. These were ‘have-to’ times and there was no slowing down, no escaping.

     Now it’s Mother’s Day, 2009; everyone has or had one at one time or other. Both my parents were gone and for that, particularly with this tragedy, I was thankful. This was a hideous situation and I can’t imagine my mother’s histrionics had she been alive. She would have had me on life support, too.

     It was a poignant day, an uncomfortable and sad one. But Paul’s mom was still around, the only grandparent still living. She is a wonderful woman, someone I admire greatly, always have, always will. When this whole bloody thing began, the horror, the fear, the angst, it was my mother-in-law – who lost her youngest child in 1974 at age 14 – who came to me, grabbed my hand and said, “I know exactly what you’re going through.”

     I’ve never told her, and I should, but of all the words uttered to us in those early days – it was her words that meant the most to me. Someone else had walked in our steps. Someone else had suffered the same pain. And it was someone I knew.

                     Mary lifts a hand in acknowledgement to our persistent demands.

     

     So Mother’s Day was tough. It was hard to go in there and see my daughter – who was slowly coming around – lie there in such a state. It was her habit to come to our home on Mother’s – or Father’s Day – to make us breakfast. The bacon had to be made in a frying pan. Real bacon is done that way. What’s with this sticking it in a microwave, she’d ask. Yep. Nothing like a smoking hot pan full of bacon getting the house all reeked up on Mother’s Day. Windows open for two days, rain or shine, to get rid of the bacon smell. 

     But it was wonderful, all of it cooked campfire style, eggs too. There was nothing like it.

    Who wants to spend Mother’s Day in an ICU? No one. But there we all were, going in, taking it in turns to visit Mary, still more than a month away from becoming a mom herself. I pointed this fact out to her.

    “Soon, Mary. You’ll be a mother, soon, too.”

      She looked at me blankly. What the hell are you talking about? She has, we soon discover, forgotten she is even pregnant.

     “Can you give me a smile?” I ask. Was that too much? Should I have done that?

      Her eyes blink lazily and slowly, ever so slowly, and her mouth curves up in that quirky way she has and I get a very weak, very beautiful smile – the best smile ever.

Next week: Isabella

Learning to live with ICU

     

                         Mary, the avid animal lover, with our dogs.

     As the days turned into weeks in ICU, as we came and went daily, we were far from alone.

     There is a ‘family’ or  ‘crisis’ room at the end of the hall on the floor, reserved for REALLY BAD situations. It’s also used for ‘team’ meetings and updates on patients, like when something goes quite wrong (as it did in Mary’s case, when, a year after the initial incident, a personal support worker left Mary unbuckled and alone on a commode during the night, causing yet another fall and two craniotomies within 36 hours); there were profuse apologies all round in that crisis room. But even more damage had been done.

    Or, at other times a social worker will arrange a little ‘meeting’ and take you there and pressure you to get those applications in for nursing homes, because spots are going fast, folks, and that’s something you don’t want to miss out on.

     Family members crash in that room in the aftermath of whatever horrible thing has happened to a loved one – hugging those wretched rough flannel hospital sheets for comfort as they shake with shock and decide on those ‘what-do-we-do-next’ steps. Or, in most cases, come to grips with what the doctors think should be done next.

     We recall with unrelenting clarity the story of a young man who took a tumble from a cottage roof. His family members were told he wasn’t going to come around and that he wouldn’t make it. The doctors and trauma people like families to know this so everyone can get used to the idea and make plans to withdraw life support.

   Thankfully, things don’t always go according to prognosis.

   Lo and behold, just a scant few days later – maybe six – this young man was sitting in a wheelchair in the patient lounge with his family, playing with his uncle’s dog and making perfect sense.

    Go figure. Don’t let them pull that plug too quickly.

    This crisis room – the only nice-ish private place on that floor where one can come to grips with reality – is usually only used by one family for one case for a day or two.

   Then, life being what it is, another horrific thing happens to someone else and another bunch of sad people come along and ease their exhausted selves into the worn furniture, try to read by the single dim light (my sister-in-law actually changed the bulb), and hide from what’s happening out there on the floor or in ICU.

    We took over that room for more than a week. We didn’t mean to, but Mary had a very large group of friends and co-workers (most of them social workers, too) who, we discovered, were just as devastated and surprised as we were by the turn of events. They were in the hallways outside, hauling in chairs from God knows where, crying, trying to fathom why and how Mary ended up brain-damaged and “vegetative” when she was supposed to be cared for … and omigod, "she's pregnant, too," they cried.

    And we have a very large family. They were all there and it was, quite simply, a nightmare for everyone.

    This little room, which basically accommodates five people comfortably, became a sort of communications hub for a while with family and friends checking in, the place bursting at the seams. And that was due to the fact you just can’t say much in ICU; it’s a place of goodbyes or great recoveries if you’re lucky, brief reprieves for others and for many, it’s the last, short step between life and life’s end.

    You can’t just walk into an ICU. You have to pick up a phone, identify yourself and wait to be buzzed in, two at a time per patient. It’s kind of grim. I remember one day a woman in the hall asking to see a patient – a daughter or niece, I think – and just as the doors flew open a nurse hearing the request said, “But she’s just died!” The poor woman collapsed on the floor.

    

     There were so many people who wanted to say goodbye to Mary, or to wish her well, or to touch her, or to pray with her – whatever their need – that the ICU rule-makers (hard to know who ran what there) allowed four at a time at one point. We put out notebooks and pens, one book for Bob, and one for us and invited her colleagues and friends to write down whatever came to mind – something Mary did that was good, bad, crazy, helpful.

     Those notebooks filled up quickly.

     We put up pictures of the Mary we knew – so she didn’t just become another sick face for the nurses and doctors. One United Church chaplain looked at them and said, “You know, it’s nice, because what we know of a patient is what we see,” and he looked at Mary as she lay there sprouting tubes.

     That’s not the Mary I know, I told him.

     “I know,” he said sadly.

     “She’s not coming back, they tell us,” I told him.

     “No. She’s not,” he said. Well, that ticked me off. Here was a man of God toeing the science line! He could have been a little more hopeful, a little more positive.

     But they all said the same thing. “She’s not coming back.”

     Chaplains of all stripes are a real and pervasive presence in hospitals. Only once did I see a family chase away a chaplain. But we found they were a bit of sanity in a nutty place and while kind, they soon got the sense we weren’t terribly religious and just came by to talk.

      Mary was raised Catholic and that fact must have been put on record by someone during her admission because a very regular visitor was the Catholic chaplain, a lovely man we got to know quite well.

     A few days into the ICU sojourn he gave Mary last rites, which freaked me out entirely. He, too, believed “she’s not coming back.”

   But we went along with all of it because, well, you never know, do you? And you hope there’s something or someone out there who gets what’s happening because we sure didn’t.

  

    This particular ‘Father’ – I came to greatly admire the Gucci shoes he got at a Rome market – must have known something none of the others did because he’d come by daily, place his hands on Mary’s head and pray. We’d stand back, respectfully, and hope it did something good.

    

       A couple of weeks into this ICU vigil, (it would last a very long stretch, from April 9 to June 26, 2009, the day after Mary and Bob’s daughter, Isabella, was born), we were all a little nuts, clinging to hope, but expecting the worst, wanting a miracle, yet trying to face reality.

     Sometime during the third week, Bob’s mom Lorraine ran out of ICU convinced Mary had squeezed her hand. She was so excited, so sure. She had so much faith and she really believed in a positive outcome.

     Mary’s best friend, Heather, the last person Mary spoke to following her surgery and before the fall in her hospital room, also ran out of ICU one evening a few days later telling us she was absolutely positive that Mary had put pressure on her hand.

     I couldn’t believe it, as much as I wanted to. I’d been standing there day after day, at Mary’s head, whispering in her ear, telling her over and over: “You’ve got to come back. You’ve just got to come back. We need you. Your baby needs you. Please come back.”

     And nothing.

      There is a method used to determine coma levels  – the Ranchos Los Amigos Scale – and we perused it from time to time to determine whether or not Mary was showing any signs of recovery. She wasn’t. According to the scale she was resolutely stuck at Level I: No response to pain, touch, sound or sight.

   And there are a couple of ways nurses determine whether or not a patient is starting to become responsive. Mary didn’t flinch once during these tests: They take the end of a pen and they press very hard into the soft part of the nail bed. Mary’s fingernails in time would be purple and bruised as they tried to get a response from her.

    The other way is for the nurse to rub hard on the patient’s sternum with the knuckles of their hand. It’s painful to watch. And there was nothing. No response, not a flicker of an eyelid, no twitch of a hand, foot, limb.  Mary was far, far away.

    When fluid gathered in her lungs and her breathing rattled, she had to be suctioned. They’d insert a tube deep down into her throat and Mary would kind of convulse, arch and go rigid until this procedure was over.

   “You might not want to watch this,” a nurse told us.

   But still nothing.

   We continued to talk to her as though she was there and able to answer us. We read Winnie the Pooh to her and the baby. We told Mary what was going on, why she was there, what had happened. We talked over her, to her, at her, sometimes softly, sometimes a little loudly in exasperation, or maybe it was desperation. But we talked and we talked. Nothing.

      And we prepared ourselves for life after Mary. We steeled ourselves for what would happen after she was gone.

      During a particularly wretched drive to the hospital one day, Paul and I had a flaming row over where we were going to bury her. I wanted her in Nova Scotia, he wanted her close by so he’d feel she was near.

     I thought cremation was best, Paul didn’t.

     God knows what Bob wanted.  We didn’t dare ask. He was in terrible shape, a lost soul caught up in a dreadful, impossible situation. We were Mary’s parents, but Mary was the love of Bob’s life – and he hers.

   And worse – he was facing being a single parent, knowing well in advance what the future held for him.

    We were all so mired in our own loss. And yet – and yet, Bob, in his quiet way, with his measured and certain intellect, had hope. He dared to hope while we tried to face reality.

      That scene in the car was bad. Mary wasn’t even dead. Things had got silly. But that’s what happens when you hang around a hospital every day. You start to believe what they tell you. And you get ready.

  

      One day, sedated to the eyeballs, I wandered over to a nearby church with Alastair. We needed a place to sit quietly and there really is nowhere to sit in a hospital that’s conducive to achieving any manner of peacefulness. There’s always someone bursting through a door, interrupting, talking.

     If I had any belief system pertaining to my upbringing, by this time in my life, it was gone. What I believe doesn’t in any way, shape or form resemble what I was taught. It’s the way the world goes, I suppose. There are so many ways to perceive and appreciate life – and sometimes the prism of structured religiosity is just a little too fractured, its light frequently a negative one.

     Human beings are exquisite creations and a bloody marvel without the weight of religion. It’s what you do with the life you’re given that counts, how you treat others, I think.

      But this particular day I was plain fed up with the waiting, the lack of answers, the assuredness of Mary’s doctors. I’d had it. I was beyond despair and staring down a long black tunnel.

     Alastair and I wandered around, sat in the church, ambled out into the spring sunshine and talked about what it would be like with Mary gone. We were such a close family of four, a formidable quartet. 

 

                                    Pooh Bear and Mary in ICU

     Not to get spooky or anything, but standing there in the light, the green buds just starting to show promise of another season, it suddenly struck me that Mary was not going to die. And I don’t know where that certainty came from. I was just suddenly sure that it wouldn’t happen. I shared this with Alastair who thought I’d lost my marbles – or “marbs.”

   But it changed the way I looked at things when I went into that ICU. It made me look differently at Mary. What if Lorraine and Heather were right? What if they had felt the pressure of Mary’s hand when they asked her to squeeze?

   

     I started to prod Mary gently, along her arms, on her hands and feet, her fingers, her cheeks. I combed her hair and cut it. I washed it, no mean feat in an ICU cubicle. It involves a washing basin, a large tray on which you rest the patient’s head, and a garbage can to catch the water. I’d be soaked and Mary would be wet down to her shoulders. But it was something positive I could do.

     I cut her nails. I bought flowery smelling washing gels and lotions for her and I put shiny pink lip gloss on her. The nurses joked Mary had ‘Angelina Jolie’ lips. And she did, too.

     And we upped the reading agenda. Mary had been a voracious reader of books and newspapers and we started reading both to her. (We still read children’s books to the growing baby and Winnie the Pooh still got his time in.)

     Bob’s stepdad started bringing in huge stuffed Pooh characters; we had a jaunty Pooh bear that wore, after a while, an old stethoscope around his pudgy neck. There was a large Piglet – a wonderful prop for hands and feet – and Tigger, who draped himself over Mary’s burgeoning belly. It was like a zoo.

   And we talked. We squeezed her hands and stroked her feet. The sister-in-law of the brighter lightbulb gave wonderful foot rubs with aromatherapy creams. Whoever was around would rub lotion on her legs or arms.

   And we were never alone – so Mary was rarely alone. Paul’s siblings and their children and spouses were there – always – to comfort, give us strength, to talk to Mary. It became, and still is, an extended family journey.

     Was it any wonder – with all that palaver, the people, the prodding, the lotions, lipstick and hair-washing, the reading and talk, talk, talking – that Mary would one day squeeze our hands and even better, open her eyes?

Next week: A slow awakening