This is the entry point in to my project. Cemre’s innocent question. I have been thinking about an introduction to my book as a way of structuring some of the work I may do on the images I need to tell my story. So let’s see what comes out.
This book is about seeking to understand the relationship between the surface I show the world and what is going on inside me emotionally and sensorially. My wife Karen is chronically ill with advanced secondary progressive Multiple Sclerosis. She is in a wheelchair, needs round the clock support from carers and is in constant pain. The images presented in this book attempt to convey what it is like for me to live with a partner who is so ill.
It has been a surprising journey gathering this work. At first I took images of myself at times when I was in a bad way. I often get in to a state after putting a lot of energy in to making things better for my wife and then realising she is no better. As I looked at these images I could not see what I felt inside. This made me realise that in the images I was looking at a functioning human being. I can eat, sleep, breathe, do work, go about existing and interact with other human beings. I may be torn apart inside but I am getting on with life.
I realised there are multiple opposing forces acting on and within me as I experience my relationship with Karen and her illness. There is a raging force to survive, to fight and to cope. I must be strong. I must hold myself together. Immense effort goes in to this. At the same time there is the tremendous effort I am putting in to making Karen’s life be as comfortable as it can be. This stokes enormous emotional stresses as I react to the pain and suffering she is experiencing with powerful feelings that scream at me to do more to help her. I am programmed this way.
At the same time I am strong, weak, distressed and alive. In any moment one of these forces dominates but that does not quell the action of the other forces upon me. So I can be very strong and very depressed or weak in the same moment. It is a fight. The images here explore this tension
The world is not the way I want it to be. I can’t make it the way I want it to be and I am struggling to accept the way it is. Thus follows existential angst. Up until the age of 50 we managed Karen’s MS ourselves and nobody else knew. Since then until now, I am 63, it has got worse and worse. For the last five years the last six months have been the worst of my life. We know we still have worse to come. As Karen’s recent medical report says
The patient suffers from severe cramps that last for hours and are extremely painfull on a daily basis. So far no treatment whatsoever has been able to control these severe spasms. Karen is in her wheelchair all day and suffers now from bedsores on her sacrum and gluteal area in spite of excellent nursing care. Furthermore she is completely incontinent to urine and stools.
Diagnosis Chronic Progressive Multiple Sclerosis
Paralysis legs 5/5
R arm 3/5
L arm 1/5
5/5 paralysis means total paralysis and for her legs two years ago it was 3/5. Producing these images has had a therapeutic effect. It has enabled me to see that even in my worst internal moments there is a functioning human being existing in the world. I can observe me photographing a physical organism that is fighting to stay alive and find a way of achieving some form of homeostasis.
I have further work to understand how to live with these powerful opposing forces so they do not crush me. I offer the book for the many people in the world who are silently suffering a similar battle with a loved one who is very ill. What they will know as I have learnt is that to do so you end up very much on your own. Most friends do not know what to do and eventually left me alone to find a way through. A very small number of special people remain.
There is a book to produce on this topic. It is a book about love and trying to survive in a stable way. There is a lot more to do.
My insight from this draft foreword is to focus on these opposing forces. Strong and weak at the same time. Happy and sad at the same time. Crushed and surviving at the same time. Keep the idea of exploring emotions and senses knowing the cognitive will be doing its stuff anyway in the background.
I write this on a day when I cried my eyes out in the car park of my local supermarket. I then broke out while in the shop. I work so hard to hold myself together and cope and then I fall apart. I feel completely drained and wiped out. These are my dangerous moments and I am glad I have put in place a support system to help me get through this phase.