The Last Act of Love

by Cathy Rentzenbrink

  When my parents moved back into this house, the house where my mother grew up, and stripped off the layers and layers of wallpaper, they found his name scratched into the wall by her during the decorating she did with her father before leaving home. They left it uncovered and put a frame over it. It looks down on them when they sit on the sofa beneath, over forty years later, still more in love than anyone else I have ever seen.

  More albums: photos of Matty and me as chubby-cheeked children being bathed together in the sink of the caravan, opening presents and putting on plays against the orange and brown decor of the seventies. There are photos of one Christmas where I appear to be continually playing a recorder, which must have been a treat for everyone. I found a photo of the record player that was the unfairly blamed culprit in the mystery of the missing words of ‘Frosty the Snowman’. There we were with our cousins, Deb, Tadgh and Kevin in Ireland. Tadgh and Kevin were in identical home-made sweaters, and Matty was sticking his tongue out.

  We get older. I am transformed from a fat baby to a dreamy, quiet little girl, into a boisterous teenager with Sun-In hair and ill-advised blue eyeliner. I was forever pulling faces, posing, laughing. All that arrogant, unbruised promise. I hated to think how little time there was before my younger self would have all her joyful silliness crushed out of her.

  I found it almost as painful to remember how happy we were before the accident as I did to think about what had happened afterwards, and knew that I should try to stop allowing the accident to ruin my memories.

  When I got back to London, I only just stopped myself collapsing on the escalator at Piccadilly tube station when a busker played ‘Wish You Were Here’, and it prompted me to make a playlist of all the songs that reminded me of Matty, which I listened to again and again. It felt like I was reclaiming my family. The Dubliners, ELO, Gerry Rafferty. The first song on the list was ‘Mattie’s Rag’, which Dad always sang to us after being away, or when he came home from a night shift.

  I remembered Dad being away for work in Dubai and how powerfully I missed him. I used to get into the cupboard under the stairs and wrap myself up in his coat – a big blue checked woollen thing with a fleecy lining – so that I could smell him.

  We were such a happy family.

  Not all the memory ambushes were bad. I bought Matt several pairs of new pyjamas, including some in a Superman design with a wonderful detachable cape. As I was helping him put it on, adjusting the Velcro pads, he looked up at me through his eyelashes, slightly shy, and asked, ‘I won’t be able to actually fly, though, will I, Mummy?’

  ‘No, darling,’ I said, and out of nowhere I remembered being with Matty at Almond Tree Avenue and using towels to make wings so that we could practise flying off the sofa. We took it in turns. When Mum asked what we were doing, we told her, ‘We’re learning to fly.’

  So I was learning to fly with my brother when we were probably both not much older than my son. I don’t remember how often the flying happened – whether I’m remembering a few minutes, an afternoon, or whether it was a regular game – but I do remember it, and at a time when I thought all my pre-accident memories of my brother had been played to death, it felt like a most precious gift.

  THE BOX OF DESPAIR

  I retrieved what I thought of as the box of despair from my parents’ house and brought it up to London. It sat in the corner of my bedroom for a few weeks as I threw it occasional nervous glances.

  Then one morning I woke up and decided to go for it. I spread the contents out on the sofa. First I looked at the diaries my mother had kept in little red notebooks. The opening pages showed me I had wrongly remembered the trip from Pontefract to Leeds on the first night of the accident. I thought I’d been alone in the back seat, whereas in fact my mother had sat with me, trying to console me in an agony of crying.

  I found Matty’s exam certificates and a card holding the £10 voucher from WHSmith, the prize that I had collected on his behalf along with the trophy when I went to the presentation evening at his school. His school reports told of a bright, inquisitive and easily distracted boy. I read some of his essays, running my fingertips over his handwriting.

  I felt again the tragedy of Matty’s transformation, the loss of him as a person, but I also felt full of fondness and compassion for everyone involved, including myself. I’d spent so much time stewing in guilt, worrying about the ways in which I had failed Matty and my parents. Perhaps now, I thought, I should try to simply feel sorry for the girl who flits through the pages of her brother’s life and death. She was very young, and very hard on herself, and living through a truly awful situation.

  As I looked at Matty’s beautiful face staring up at me from the newspaper clippings and read the opinion of one of his examining doctors that ‘Matthew Mintern is the most severely brain-damaged person that I have ever seen’, I considered the other pillar of my guilt: that I should be more over it, that I should be able to count my blessings and get on with life. But as I looked through all the notes and diaries that charted our journey, I saw clearly that it would be impossible to have had a heart and lived through this unscathed, and I felt a growing sense that maybe I could look my guilt in the face and think about being a little less hard on myself in the future.

  PROLONGED DISORDERS OF CONSCIOUSNESS

  I wanted to find out what was going on in those cases in the paper where people woke up from a coma after many years, and also whether there had been any medical or legal developments in the years since Matty’s accident. I didn’t approach it lightly, and was terrified I’d induce the spiralling despair I had felt in Holland on reading the coma article. However, I screwed my courage to the sticking post, and Mum offered to help. It was she who found a recently published report on ‘Prolonged disorders of consciousness’ from the Royal College of Physicians. I read it with a growing sense of delighted relief.

  The legal precedent for withdrawal of CANH [Clinically Assisted Nutrition and Hydration] in VS [vegetative state] was set in 1993 in the case of Anthony Bland, who sustained catastrophic anoxic brain injury in the 1989 Hillsborough disaster. As a result of that judgement, the legal position is that it is lawful to withdraw CANH from a patient who is in VS. Since then, over 40 applications have been made to the Court of Protection to withdraw CANH in patients in permanent VS, and the required declarations have been granted.

  Once it is known that a patient is in permanent VS, the Court accepts that further treatment is futile. It is not only appropriate but necessary to consider withdrawal of all life-sustaining treatments, including CANH. Indeed, to continue to deliver treatment that prolongs their life in that condition in the absence of a reasonable belief that treatment is in the patient’s best interests may be regarded as an assault.

  I fell in love with that phrase: ‘not only appropriate but necessary’. I felt the burden of responsibility shift.

  Many families will have been informed during the early acute stage of injury that the patient is unlikely to survive. Once the patient has survived, apparently against all odds, miracles may seem not only possible but likely, and family members may see their loved one as a ‘fighter’ with a determination to recover which will overcome physiological obstacles.

  Yes! I remembered our absolute conviction that Matty’s fitness and determination on the football field would translate into recovery.

  However, with hindsight, efforts to save their loved one’s life may be viewed with regret. One family member said: ‘Would that they hadn’t got to Charlie in time to resuscitate him – knowing now what I didn’t know then.’

  Even those who fight for all active measures in the early months or years may change their minds about the appropriate course of action in the future.

  Yes and yes. I remembered Killingbeck and the heroic attempts to cure the lung infection that could so easily have been allowed to develop into pneumonia, those hard years of gradually coming to see the futility of our efforts to prolong Matty’s life.

  On occasions, th
e initiation (and cost) of bringing applications to the Court has been left to the family. The GDG believes this is wrong. The legal costs of the Court application should be borne by the responsible public body, and the onus for initiating the application should lie with the treating clinical organisation or those who commission the care.

  We all felt too responsible. Too much like it was us giving up. I had started to feel like a murderer.

  Challenges for end-of-life care and place of death

  Patients dying in VS pose a number of challenges for management which include the following:

  The process of dying is often prolonged and timing of death difficult to anticipate.

  Patients with profound brain injury typically have complex spasticity and involuntary movements requiring skilled postural handling techniques and specialist equipment often not available in standard hospice settings.

  Patients dying in VS frequently exhibit signs of ‘physiological distress’ (see below), which may give the appearance of suffering even when the patient him/herself is unaware. Such signs are distressing for family and care staff to witness.

  Managing end-of-life care in this difficult situation often challenges care staff to their limits. For all these reasons, end-of-life care for patients with VS or MCS requires a team-based approach with close coordination between specialists in palliative care and neurodisability management. The combined skills of both specialties are required to optimize medication, to support distressed family members, and also to support the care team.

  I read through the report again and again and found it very comforting. There was a lot about the burden on relatives that made such brilliant sense. I felt less like a weed when I read about how clinicians have to be specially trained, that withdrawal is distressing for everyone, that counselling programmes should be in place. I wasn’t cross – I didn’t think it was anyone’s fault – but I hoped that if it happened now it wouldn’t unfold for others the way it did for us. It really shouldn’t have been Mum and Dad alone in the bungalow with a supply of diazepam suppositories.

  In all the medical reports about Matty in the box of despair there are occasional mentions of me, of my psychological problems, of my state of mind, of how I was finding his condition difficult to come to terms with. Reading this report, I realized that there was nothing unusual in that, there was nothing unusual about me, there was nothing unusual about my family, except our exposure to a desperately cruel and unusual situation.

  AN IMPERFECT WORLD

  Feeling buoyant after the success of my research, I decided to revisit the hospital in Leeds as it was the site of so much of my story. I emailed the infirmary, who said that a chaplain would show me round.

  Everything looked different when I got off the train. It could have been anywhere. I bought a coffee, fumbling over the change with nervous fingers. Only when I reached the town hall with its giant outdoor chessboard was I in familiar territory.

  I’d thought a lot about the chapel over the years, about the night I’d prayed there after leaving Matty’s bedside. In my mind I was expecting a carefully non-denominational wooden box, underground and airless. When I got there, I stared at the stained-glass window and the altar and was disorientated to realize I’d misremembered it.

  Jane, the chaplain, exuded practical kindness and I felt I was in the hands of an expert. She had brought me a booklet about the history of the chapel and pointed out the lurid green face of the ill person depicted in the stained glass. I learned that I wouldn’t be able to wander into the chapel late at night now. It closes at 9.30 p.m. because they had too many problems with syringes behind the altar. I’d asked if I could see one of the overnight bedrooms for relatives, wondering if the tiny white room was as I’d remembered, but they are long gone too. In front of the prayer tree, reading the supplications of those in agonies of worry for their loved ones, I wished I could pray for them. I hope things work out, I said in my head, or if they don’t, I hope the aftermath is not too brutal; that it is not as long as it has been for me.

  Jane told me about the baby memorial service they hold each year before Christmas. One year four friends, women in their eighties, came after seeing the ad in the local paper. They’d all lost a baby and had never spoken about it to each other, or anyone, until the ad in the paper had prompted them to make a group expedition, each of them holding a rose, each of them crying for a lost baby. I was struck by the gap, the huge length of time over which they had bottled up their own toxic narratives. Fifty, sixty years, probably. How long does grief last?

  Jane and I had discussed by email that I wouldn’t be able to see the ICU and that the other wards had all moved, but she took me to see an old-style ward that would have been similar to the one Matty was on, and a new-style ward where an adult male patient who had had neurosurgery would now be transferred to after intensive care.

  There was a fresh, fruity smell in the air not dissimilar to the mango-scented preventative nit spray I combed through Matt’s hair every morning. We walked through the wards and on past the garden where we’d wheel Matty on fine days, and on again to the canteen, which was transformed. But everything was different now. There was a roof terrace. And a Costa.

  We stood and chatted in the corner of the canteen, which had been renamed the Food Court.

  ‘Can I ask you a theological question?’ I said to Jane.

  ‘Oh, go on then.’ She laughed.

  ‘Where do you think the soul is, in a very brain-damaged person?’

  I had worried about this a lot over the years. What would a religious person think about where Matty’s soul was and at what point it left his body?

  ‘I believe in an all-loving God holding our souls safe. It’s an imperfect world, though, I know that.’

  I wasn’t sure I understood, but I liked Jane. We talked about the benefits of faith, about the difficulties of not knowing what to believe when you don’t believe.

  Then I thanked her, left the infirmary and walked back down past the chessboards to the train station.

  On the train back to London, I thought about why revisiting the hospital was so much less distressing than I’d feared, and realized that I’d braced myself to cope with the sight of a patient who would remind me of Matty. I didn’t need to, because we didn’t see anyone in his condition. That’s how rare it was.

  According to the report on ‘Prolonged disorders of consciousness’, there had been forty successful applications for withdrawal of clinically assisted nutrition and hydration since the case of Tony Bland in 1993. Someone was far more likely to have won the lottery than they were to have died by withdrawal. I wondered how the stats stacked up: how many people had brain surgery after an accident, how many survived, how many got some kind of meaningful life back, how many were left with severe neurological deficits, how many were left in PVS.

  Did anyone get fully better? Was there ever any real possibility that Matty would have recovered anything of his real self? I thought of all those cases you read about in newspapers where people magically wake up, but realized that I didn’t remember one single real example of anyone being left in anything other than a pitiful situation. No one had ever said to us, ‘Oh, you need to meet Jamie/Michael/Bob – in a coma for three weeks and then PVS for a couple of years but now skipping around like a good ’un.’ Nothing like that ever happened.

  I needed to find some proper answers, and the next day I went back to the report, hoping I’d be able to find someone involved who might talk to me. Looking at the list of authors, I saw that Jenny Kitzinger was both a professor at Cardiff University and an insider researcher; her sister had been in a minimally conscious state after a road accident. Knowing that she too had witnessed the destruction of a sibling helped me feel brave enough to email her to ask if there were any statistics on likely outcomes following head trauma and surgery. Jenny emailed straight back offering to chat, and I tapped out her number with shaking hands. As we talked, she told me reliable statistics were hard to come by, b
ut it was estimated that 6,000 people in the UK were in VS. Her own research was focused on collecting experiences of relatives of someone with a brain injury to share with medical professionals and practitioners and other families. After we’d been on the phone for over an hour, Jenny asked how I’d feel about being interviewed on film for her project. I agreed immediately. She was kind and knowledgeable and I was full of relief that I no longer felt so alone.

  ‘Can I ask you something else?’ I said, my heart thudding.

  ‘Of course.’

  ‘I worry about this a lot. I know deep down that Matty was wrecked, his brain was destroyed, but what is happening in those cases where people wake up from comas after several years? I don’t understand it.’

  ‘Well,’ said Jenny, ‘miracle stories do float about, but in general the person will have been less ill than reported and the recovery will be less dramatic than reported. Newspapers like a good story, don’t they?’

  It was a revelation. But, I realized, I should have known. The same thing had happened to us when Matty’s exam results were supposed to have triggered him waking up and smiling. Our story too had contributed to the false idea that a serious head injury can be fixed with a bit of good news.

  A few weeks later I sat in Jenny’s house in Cardiff and looked out over Penarth Bay as she filmed me crying my way through the whole story. I was in tears telling her about the journey in the ambulance.

  ‘I didn’t think I’d start crying this early. This isn’t even the bad bit. I find talking about the accident quite easy, because in comparison to what came later it’s not particularly distressing.’

  ‘What do you mean?’

  ‘It’s such a tiny part of the whole. I accumulated all this knowledge I didn’t want after Matty was knocked down. That first night I learned how it feels when the person you love most is close to death. It was rough at the time, but it doesn’t even make the Top Ten of the worst moments.’