may have read the pages I have written about my work and my spiritual
journey. Occasional references are made here to my chronic health
problems for they have become central to my spiritual journey and are an
important component of my work. Yet they are something more than
this. So pervasive have they become that I increasingly experience them
as the central context of my life: I am a person who experiences pain and I
am a person who is disabled. The theological resonance of ‘I
am’ seems to me significant, I am not ‘I am who I am’ as
much contemporary culture seems to be encouraging me to think about myself
but rather I am this contingent being who struggles with his own pain and disability.
I’m surprised that this is where I have got to in my journey.
Elsewhere I tell my illness story in more detail but here I want to give a
brief description of my growing awareness and my writing about it
I grew up as a pretty healthy child. I played sport every day. I ate well. I had a loving family. From the age of 15 or so I began to experience physical pain, with hindsight I can see that my body was not altogether at ease with itself. But I didn’t think about it and I certainly didn’t write about it. As I moved into my twenties my various problems began to place a limit on my life, I’d turn down an opportunity, for example, to work on the West Bank and the chance to visit Nigeria. At work there were certain things I couldn’t do and I avoided going on holiday with friends because I knew I couldn’t physically keep up with them. But still I didn’t think of myself as having a chronic illness or being disabled. Nonetheless being alone became increasingly attractive because then I didn’t have to manage other people’s expectations and my own physical frailties. Frustrations with my health began to creep into my poetry and a friend turned to have these lyrics into songs. But my disabilities were still distant from me, they were obstacles to be overcome rather than central to my identity. This began to change through my involvement with Dr. Mike Sheldon and his work on holistic Health Care. After a while he asked me to take on a research fellowship for a new organisation called WholeCare into the experience of ME and other chronic fatigue conditions. This precipitated a process of research and writing which I found enlightening and nurturing. At the same time I began to look at disability issues through my work with Barnardos CANDL project and started a chronic illness programme with the Urban Churches Support Group, working with Elizabeth Bayliss and Maggie Hindley on this was a really positive experience and leads to the Be Not Afraid programme. Working on chronic illness issues has now become central to my professional life and this, perhaps, has made its central to my identity.
But I think there is also something deeper. I remember when looking at mental health issues a strong theme was people asserting that they were more than their illness. In that context I think I understood what they were saying, because to be a schizophrenic or to be a manic depressive could be oppressive, particularly because it was coming as a diagnosis from an authority figure. But when I say I am disabled or I am my chronic illness, it is not a diagnosis but a self designation. I suppose it is in some way similar to the use of the N word by African Americans but I am not using it with subversive intent. My illness was not done to me, I did not have an accident, if I was infected by something I don’t know what it was. No this is a way of being who I am. It is my modus vivendi. My way of life. I would not choose it, if I could I would change it but I can’t so I say this is who I am. It is the shadow which underwrites my life. It is the dark presence in all my writing.