Written by Prof Irene Tuffrey-Wijne, Project Lead, Kingston University.
The year is 2006. I am a brand new researcher, sitting in the Research Advisory Group in the first year of my first major study into the needs of people with learning disabilities who are at the end of their lives. I am reading the group the story of John Davies, one of my first research participants.
John has been diagnosed with a devastatingly advanced form of penile cancer. He has ignored his symptoms for many months, and despite initial hopes to the contrary, both surgery and chemotherapy have proved insufficient to keep the cancer at bay. He is dying, and he knows it. I explain to him that my job is to tell the stories of people like himself, and he is delighted, because telling his story is one way to make sense of it. He takes ownership, dictating the story of his life and his illness fluently into my little microphone. It is the draft of this story I am reading to my group of advisors, which includes a professor of learning disabilities, a hospice doctor, a psychiatrist, and two people with learning disabilities. As part of ongoing data analysis, I want to get their perspectives on it.
“Hello, my name is John Davies,” the story starts. “I am 44 years old. I’ve got cancer, and I don’t want to happen to other people what happened to me. I left it far too late.”
John talks briefly of his childhood:
“Name calling is the worst thing that happens, and it’s no picnic being called a spastic. But then I’ve learned to think, ‘sticks and stones break my bones’… and I just kept plodding along, going along in my own little way.”
He then quickly moves on to telling us how he became seriously ill, how he went to the doctor with pain when he went to the toilet but was sent home with antibiotics for a urine infection, and how he subsequently ignored worsening symptoms. First he thought it would clear up (the doctor had said so), but then he simply became too embarrassed to tell anyone. He explains:
“I really found it difficult when it got worse. I found it difficult to hide because by then it was noticeable not only to me (I could see it), but everybody else could smell it. There was a bad smell coming, and it didn’t matter how many times I got in the bath… My mum noticed that I was getting skinny. I said not to worry, that I was OK. But I wasn’t really OK at all. And I was very tired. In the end I just went home and went to bed, and I didn’t get out for 4 days. My mum said to my brother: ‘You go round and see John, I am worried about him’. So my brother came round, pretending that he was just passing by and that he wanted a cup of tea. Well, if he wanted a cup of tea he wouldn’t have got one because I had the tea bags but no milk: I hadn’t been out of bed for 4 days. I just had bottles of water beside me to drink from, and I was using a bucket to do wee-wee. There was nothing coming out the other end because I weren’t eating anything. I’d let it get untidy and there was a bad smell because I couldn’t empty the bucket that had the wee-wee in. I hadn’t been able to keep the house clean, everything that was in the house smelled of wee-wee. Later on the council had to come and fumigate the whole house. When my brother came he just took one look at me. I tied the coat round me but the coat fell off and he saw this lump, and this stuff coming out of it… It made him feel sick. He just got on the phone and called the ambulance there and then. And I got carted off to hospital.”
The story continues with treatments, in and out of hospital, hopes raised, hopes dashed, and worst of all: having to tell his mother that he has cancer.
“Sometimes I think: I wish… But you could wish a thousand wishes, and there is nobody with a magic wand to make it better. Sometimes I look at myself and think, ‘I lost my dingly-danglies. And I could have saved them. Now I take one day at a time. Life is too short, so I take one day at a time. You try to make the best out of a bad thing, which is what I have been trying to do.”
I manage to get to the end of reading the story, just about. But by now, several people in the meeting are so distressed that we stop, make some more tea, and talk about it. The doctors and nurses in the group are devastated by the terrible sequence of events, from first mis-diagnosed symptoms to the final verdict that the cancer has come back and John will die. But our two advisors with learning disabilities are particularly upset. They are crying. What has upset them most? There was barely anything in John’s story that was not upsetting. But what they focused on was the one thing I had glossed over, one thing I had not picked up as important.
“He was bullied at school,” one advisor says. “That happened to me.” The other advisor nods, in tears: “Yes, me too.”
That was my first lesson in the importance of having people with learning disabilities help us with making sense of what we hear in our research. They brought a perspective that turned out to be crucial. They helped me see that your life-long experience of not being important, not being valued, shapes the way you experience serious illness. Yes, John was devastated by having such a terrible form of advanced cancer, but he was unexpectedly uplifted and delighted by all the attention he received in the hospice (“They treat me like a king”). And he could never have dreamed that anyone would ever want to read his story. I managed to get it published under his own name (we had to go back to the Research Ethics Committee to allow him to do this), and I showed him the proofs nine months after I first met him. He was amazed and delighted. “I have achieved everything now,” he said. He died a few days later.
You can read his story here.
I have never forgotten John. He has stayed with me all these years. He also became the posthumous model for the main character in the Books Beyond Words story “Am I going to die?” (We used those pictures a lot in our focus groups).
Fast-forward 17 years. The Victoria & Stuart Project. Nine people with learning disabilities are meeting in the All Together Group, to help us think about good ways to plan for the end of your life. We are experimenting with the “Washing Line” idea: telling the story of your life with pictures and other items pegged along a long line that symbolises your life. We wonder whether that might help us think about the remaining, still-empty bit of washing line: What would you want to see there?
Richard has agreed to try it out. We think we know his story already, as he published his a book about his life last year. It’s a brilliantly triumphant one of achievements against the odds. Richard starts his washing line as he starts his book, with him mum who was told to “put him away” along with his disabled brother, because they’d never achieve anything. We watch and smile and cheer as his line fills up with being a college student, a baker, a swimmer, an artist, an advocate, and eventually a university researcher. Someone who lives in his own flat and makes his own choices.
And yet, at the end of all this, when I am thinking about the marvellous way in which we can now all visualise and applaud Richard’s life (and applaud we did), and pondering how that might help planning for what comes next, there are tears in the group. Why?
Because Richard’s parents were told that he was not worth anything. The person who cries about this (“That brought back memories because the same happened to me”) has others wiping their eyes. Me too, me too.
And once again I am stopped short. Here we are, busy trying to make sure people are valued at the end of their lives, trying to make sure they have their wishes met when they are dying. But perhaps we are not quite seeing the huge impact of being told, right from when you are first born, that you shouldn’t really have been alive in the first place. That your parents shouldn’t have any more children in case they have another one like you. A lifelong message that is reinforced by bullying and abuse, discrimination, by the unspoken (perhaps no longer noticed) impact of nobody coming to sit next to you on the bus.
Making end of life choices? In advance? And people actually listening to your wishes? Perhaps that possibility is as surprising, maybe even unimaginable, as it was for John to find himself treated like a King and see his name in print.