Coming to grips with loss

     We told ourselves, as the early days passed by painfully: You couldn’t make this up. It was fantastical. Mary was lying in an ICU, on life support, rigged with tubes and wires – not because of a car accident, a hit and run or other horrific incident – but because hospital staff didn’t properly care for her post-surgery.

     And worse, no one came to us to explain what had happened that night. We just didn’t know. Even Mary’s copious medical files wouldn’t tell us the true story.

     There was a wall of silence. And no one was talking to us, which made the situation so much worse. We felt, from the beginning, that we were treated as though it was our fault, as though Mary – or all of us – had done something wrong. And this was only due to the attitude of those treating her. It was disgraceful – now that I look back on it.

     We now know a lot more about what happened that night, of course. But that’s because we’ve filed complaints with the College of Physicians and Surgeons. The young R2’s (resident’s) response to our complaint was an eye-opener.

  We will always believe he – and the nurse assigned to Mary that night – failed in their duty to adequately direct her care after the fall in her room following surgery, and to make certain Mary’s safety was ensured.

     “Someone dropped the ball,” we kept saying to each other in the days after the horrific incident. But in those early days, and for months after, we just didn’t know how.

      I’ll never forget that night, early April 9. Yet even then I somehow knew the Mary we had raised, the one who came home, drank all our bottled water,  made us dinner, exchanged witty barbs with her father (she was so, so like him – bizarre sense of humour, long legs, long arms, tall with wildly curly hair), got the dogs in a frenzy, passed on her news and gossip, threw out sarcastic comments and left us all in a mess, but totally happy – was gone. For good.

     It would all be a guessing game now.

     Mary spent 11 weeks in a trauma/neurological ICU (where you land if you have a serious accident or have a stroke, brain hemorrhage or tumour removed, etc.), an incubator tucked just around the corner in case she spontaneously delivered her baby. This can happen, we were told, to women in a coma.

    And Mary was indeed in a deep, deep coma, far away in a world where no one or nothing could touch her. A ventilator kept her breathing, her chest rising and falling as it hissed and pumped. She was so, so still. There were a couple of computer screens that monitored various readings. I watched them blankly, the lines and numbers jumping occasionally.

    But Mary slept on. And on.

    I worried that the tape on her face holding the tube in place hurt her. I worried that she was cold as she only wore a thin blue gown, which they sometimes only placed across her body. Was she comfortable? Could she feel pain of any kind? Where was she? Could she hear us? Did she know we were there?

    And how on earth could her baby survive?

    I recall a couple of very early meetings with ICU staff doctors who had assessed Mary. These meetings were held in a small room at the end of the unit. It was crowded once everyone was seated and it was not the most pleasant place – if there even is such a spot – to be told your child is going to die.

      The room seemed to double as a small kitchen, yet it was an austere room. But not as austere – or at least emotionally spartan – as the medical staff who addressed us.

    Our first inkling that this was an unusual situation was the presence at these meetings of the hospital bio-ethics advisor. He sat in with us – Paul, myself, Alastair (Mary’s twin) Paul’s brother Marty, Bob, his mom Lorraine – as well as a social worker and chaplain, as doctors explained what had happened to Mary’s body as she was deprived of oxygen.

    

   One doctor told us that as the oxygen had failed to reach Mary’s brain, it had failed to feed other organs, too, meaning her heart would be badly damaged. Another told us she would be vegetative and never wake up as the CTs showed widespread damage to the brain. She’d never talk or walk. She’d never wake up. They were so, so sure of that.

     Another told us they would keep her alive – but only until the baby could be born. She just wasn’t coming back. And that was that. It seemed, in those early days, that just so we understood, some resident would come by daily and remind us: She’s not coming back.

    The doctor who told us she was vegetative – “I thought perhaps at first it might be locked-in syndrome, but it isn’t” – also went on to tell us we might want to consider that hospital’s palliative care unit after the baby was born as his grandfather had died there and the family had been quite happy with the care.

     This suggestion shook us.  (Hello baby, welcome to the world; goodbye our darling daughter.)

                Paul, left, and Bob, a few days after hearing the bad news.

     We were in such a state of turmoil, trying to come to grips with a coma, a lost daughter, an injury that seemingly could have been prevented, and a doctor sitting at the end of the table was talking about his grandfather and palliative care. It was too much. 

      The meeting ended, the deeply saddened bio-ethics man talked to us gently, telling us he’d told the doctor in charge of ICU that when it was time for the baby to be born, three months away at least, there was to be no pain, nothing was to go wrong, that it was all to go to smoothly. He was a kind man, perhaps the only wise one we met on our epic journey through the tragedy.

     I hadn’t known that hospital bio-ethics advisors had so much clout. But they do, apparently.

   

     The second day Mary was in the unit, at the end of that meeting, was the first time it really hit us. We left the meeting, Paul’s brother slipped away in tears, and we went back to the darkened cubicle where Mary lay, a plethora of tubes and wires keeping her alive, monitoring what seemed to be left of her life, as the life inside her continued to grow.

      There were chairs at the end of the bed and I sank into one, Paul into the other. ICU is quiet. You get used to it, the hiss of machines, like a steady rainfall but not nearly as pleasant, the quiet voices, the scribble of pens recording notes, soft footfalls, quiet patients. Very quiet patients in most cases. Next door a gunshot victim, across the way a man with part of his skull removed, a ‘left flap’ sign hanging above his bed; stroke victims, accident victims, people who have had brain tumors removed. It’s a scary place, a place you never want to visit, let alone have to visit.

       We took this all in as we sat there holding hands.  I listened to all of these soft sounds, watching Mary’s chest rise and fall to the rhythm of a machine, trying to grasp the prognosis we’d been given, the final word. From somewhere in the L-shaped ICU, I heard a terrible crying noise, a rising wail and uncontrolled sobbing and wondered who on earth would have the nerve to do that. It was a desperate, wretched sound and it was very out of place. My hands lay in my lap and I watched Mary as that sound rose and rose. It was painful to listen to.

     It wasn’t until two hands clasped my face and a voice said, “Oh, I wish I could help you,” that I realized that truly dreadful sound was coming from me. The woman holding my face was an Anglican woman chaplain who looked as desperate as I felt.

     (We’re not traditionally religious in any sense, but we are spiritual. The presence of chaplains might put some off, but I have to say I was calmed by their presence. They have an awful job, too – they work alongside science, belief systems trying to maintain a foothold amongst cold, hard facts.)

     Tears streamed down Paul’s face and he held me in an awkward sideways hug; we were two miserable people and one chaplain with an awful job on her hands.

      It had finally sunk in. It was the beginning of our grieving process, for even as Mary lived, we began the process that is still ongoing – deeply grieving what we have lost.

     It was, quite simply, the worst day of our lives – far worse than being told our son, Alastair, had cerebral palsy when he was two months old; far worse than being told he had cancer when he was 21. Even with those prognoses there was hope.

    We were now told there was no hope whatsoever for our remaining child, who until recently had been such a healthy, laughing individual.

      (And Alastair? He survived the cerebral palsy and the cancer and is a strapping man with a huge laugh that didn’t exist before he had cancer. Every day, he tells us, is a gift, a chance.)

      But this was bad. It was so bad I just wanted to die with Mary.

     I soon found out you just don’t die because you want to – and you come to realize that you can’t; there’s job to do, an outcome to achieve. You feel you somehow have to live forever to make sure everything is okay – with Mary, with Paul, with Alastair, with Bob  ….

     You have to stay alive and you have to keep things going and you have to find ways to make everything okay. Because if you grow in up a Presbyterian household as a Presbyterian minister’s daughter with that Calvinistic thing going on you have to make sure things are all right all the time. It’s the only way things are done.

     Well that’s a myth. I realize now that isn’t what you have to do – that you can’t make everything all right all the time and that you certainly can’t live forever. (I’m working on that one, though.)

    But you can, taking small steps, make a huge difference for the person you love trapped in a hospital setting. You can fight, scream, shout, disapprove and get downright demanding if you have to.

     We had to – because, damn it, things continued to go wrong in that place and if we hadn’t stuck around every single day I hate to think of what else might have happened to Mary.

   

      If you have to be truly ill – and it's not something I recommend to anyone – then ICU is the very best place to be. In ICU, patients are looked after by real, honest-to-goodness angels who don’t have to fluff their wings, adjust their halos, or arrange their heavenly garb.

    They remain resolutely positive and talk to you kindly and explain things. They’re there to monitor, care for and make sure your loved one is as fine as they can be in such a place. They want to help. And they do help.

      A few days after Mary’s arrival in the unit, a nurse explained to me that when they do emergency surgery, the surgeons just shave off the hair to make the incision and leave the hair where it is – lying in a shaved mess on the head.  So, the nurse explained, Mary still had a huge hunk of shaved hair under that green tea towel-like dressing and would I like to help her remove it?

      I would. I managed to clamber behind the bed, under wires and machines and all manner of equipment. The nurse handed me the scissors and I began to cut through Mary’s long, very curly locks to get to the mass of shaved hair that looked like a bird's nest.

    Would I like to save it, she asked. It was the only thing in the world I wanted at that moment. She handed me an empty plastic biohazard bag and I carefully folded Mary’s hair – which still smelled sweetly of the shampoo I used when I bathed her at the first hospital – and I put it in the bag. That bag is still in my night-table drawer. I’ll go to the grave with it, although I can’t explain why.

     When you know you’re going to lose someone, you hang on to the things they gave you, the little things they did for you, the places you went, the things you did.

       The night before Mary became really ill – the shunt slowly becoming blocked, the pump quitting – she came out to our east-end home and made dinner for us. She was a terrific cook. We had such a wonderful evening, the four of us, seated around the dining room table. We all have pretty good senses of humor – which has stood us in good stead and helped us keep our sanity – and we laughed a lot that night. That night was such a blessing.

    

    Mary and I took a holiday in London together two years prior to the brain injury. We stayed in a tiny flat just north of The King’s Road and we’d walk past a little jewelry shop on our way to the tube station. We’d window shop and talk about things, comment on passersby – as you do, nothing hugely intellectual.

     One day I noticed a delicate bracelet that was linked by mother of pearl hearts, tiny fish and other things. It was exquisite. And then we moved on. Mary was meeting her friends, one who was in town, another who had moved home to London a few years earlier.

    I didn’t know it, but Mary returned to that store and bought the little bracelet for me for Mother’s Day. She gave it to me over breakfast at Heathrow,  just before she flew home to Toronto and as we waited for Paul’s flight in. 

    I knew the bracelet was probably too expensive, I knew she couldn’t afford it, but I was so surprised and overjoyed with the gift.

    I’ve hung on to that bracelet like some sort of talisman since Day 2 of this whole tragedy and you’ll never find me without it.

    Because tragedy does the strangest things to you.

Next week: Refusing to agree