“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of those depths.” Elisabeth Kubler-Ross
Elisabeth Kubler-Ross was in many ways the founder of the Hospice movement. She was the drive behind this movement because she believed that euthanasia stopped people from completing their unfinished business. She believed that we should heal those who were dying, support them to have a good death and enable their families to grieve properly. It was revolutionary, and it was necessary.
When I was a jobbing writer, I secured a position at a Hospice – 2 days a week for 6 months and then 1 day a week for another 6 months. It was an extraordinary time, and for a while I knew a lot of people who were near death. Well, nearer death than me as it turned out – though of course we can never be certain about that.
My job was to work with patients in day care. I mostly worked Tuesday and Thursday (although not always) and so I began to build relationships with a lot of people who were either in remission or who were well enough to still be at home but who came to day care to receive treatment, socialise or get out from under the feet of their loved ones.
There were many people over the course of the year that I got to know very well – initially there was some suspicion about who I was as I wandered round with my notebook as well as what I was trying to do but as time went on people spoke to me, told me their stories. Together we wrote poems and books, embroidered words into banners or other things made with love.
A number of people stick out in my memory – slivers of lives I got close enough to touch.
One man, I’ll call him Clive, sat alone by a window and always seemed sad. I chatted to him. In his younger days he’d been a grave digger, and he told of the process of burying a man. It was as if his insider knowledge weighed him down. Clive told me he’d never really had much but when he found he was going to die he gave it all away. I told him that was an amazing thing to do, “I won’t need it where I’m going,” he said. Weeks later he discovered he wasn’t dying at all but Clive was resigned nonetheless and never regretted the loss of all the things that would have made his life easier – like his TV, his record collection and his books.
Patients sat around in armchairs – some making rugs, some doing art, some staring into space. Others chatted to other patients as if they were old friends. The rules of friendship are changed in day care and the connections were often deep and heartfelt.
Volunteers supported the process every day: all vetted to make sure they weren’t morbid or moribund or nefarious in their need to be close to the dying.
Another patient, Claire, was younger than me although we’d had very different lives. She had four kids and was the youngest of five herself. Her cancer had started on her leg as a lump then grew like a banana from her thigh. “Have you ever noticed,” she said, “How they always describe lumps via fruit?” She laughed and then added, “It’ll be the size of a melon, or an orange, or a grape.” I smiled, nodded, “They use sports equipment too…”
“Ah yes, the size of football, a golf ball, a cricket ball. Although that wasn’t the case with my leg. It just grew like an inner-tube, a spur. I knew right away I was doomed.” And she was – all the time she had left she gave to her children, making memory boxes until she died – weakened by the drugs and treatment – of pneumonia, a common cause for those in end of life care.
Another person who sticks out in my mind was John – who looked so well. “People say that! I must have looked shocking before.” John was a lovely man, the sort you’d want as a father or a grandfather. But he was bitter, angry. “I’m the fourth person I know who worked for the Electricity board who have a cancer – is that coincidence? We used to shimmy up those poles, and without any protective clothing at all, get to work. Know the worse thing Mary? They can’t say what my primary cancer is. Know what the problem with that is Mary? I’ll tell you: they can only treat symptoms and not the source. So I’m dying but I can’t say what of, because they don’t know. I’m a man of mystery!”
The other reason John was bitter was that his grandchild was also dying. “I can’t even say take me, Mary, because they already are doing. But I’d give anything to save him.”
Another time he said, “Mary the problem with children dying of a brain tumour is that apart from that, there’s absolutely nothing wrong with him. He’s as fit as a fiddle. Apart from that, there’s nothing wrong and he’ll live for a long time.”
He did. John outlived his grandchild, and his pain was so deep and profound and palpable he’d no longer speak to me at all as though my writing it down would make it real. More real. But John stayed ramrod straight and dignified in his stoic acceptance of the terrible fate of his family. He would sit in the mini-chapel, not because he believed but because he was left in peace.
Overall, I was sometime chronicler, some part therapist or listener and some part a weaver of tales.
Even the volunteers spoke to me. “I wanted to be a help.” Dorothy confided one day, “When my boy Alex died I felt I needed to put something back. And I know how profoundly painful grief is and how it never passes completely.”
“I’m sorry to hear that.” I did not invite any kind of confession but she was quick to share. Her son, a bright able strapping young man went to bed one day and never woke up, dying of an undiagnosed heart condition: sudden adult death syndrome.
“I can’t tell you how I missed him Mary – for a long time we kept the rental on his flat and I’d go in and just feel him. I’d stand in the wardrobe and smell his smell and for those moments it was as if this terrible nightmare had never happened. And then the smell began to fade, and I realised that although it never passes – grief changes. In my dreams Alex lives a parallel life, marries, has children, gets to middle-age. I know he doesn’t but it’s a blessed comfort, and it means that I can live with the space where Alex should be, but isn’t. And coming here I know I can enrich these people’s lives and my own too. It’s more than I expected to feel and I’m grateful for that.”
Dorothy was so dignified and so alive. And practical – an extra pair of uncomplaining hands. She was one of the beautiful people who had suffered, and struggled but she had survived. She had found a path from deep, unremitting pain and was living again.