My name is Len and I love and adore my wife Karen. We have been married for nearly forty years and are each others soul mates and best friends. Karen has Multiple Sclerosis and is chronically ill. It is a cruel illness in which Karen has experienced a period of relapsing remitting phases where she would be struck down with an episode but would then recover to some percentage of previous function. She now has secondary progressive which means she is in a rapid and continuous decline.
Karen is in a wheelchair now and needs carers to get her up in the morning and to put her to bed. She also needs help with all of her functions. She is numb in large parts of her body, experiences violent and painful spasms and is rapidly progressing towards total paralysis. She has constant back pain from sitting and lying all the time. The choice she has now is to live with extreme pain and remain conscious or to take medication that addresses pain but leaves her semi conscious. She lives with teeth gritting pain to be conscious. She is an amazingly strong human being.
I am not ill but have been two steps from suicide on three seperate occassions. Seeing someone I love in so much pain and distress every day is heartbreaking. In rational moments I do not want to end my life but the pressures of the experience I have been going through has made me want to end the unbearable pain I get in to. I have some understanding of what is going on and how hard it can be for a partner to someone with a chronic illness. Put simply the more you love your partner the more painful the experience of their illness.
This work is an attempt in words and images to explain what has happened to me as Karens’ condition has deteriorated. I do so to help others in a similar situation and also as a therapeutic effort to keep myself on the right track.
The Failure of Me
My most recent experience of wanting to end my life was in a beautiful spot in Spain at Cap de le Nau near Javea. It is a place I go to once a month with birdwatching friends to carry out a sea watch and record bird migration patterns. At the time I believed I was more unhappy than any possible cumulative unhappiness I would cause by my action to all those I love. I could not see a way of coping with the challenges I wished to address and just wanted it to end. I stood one step from jumping 600 feet but broke out of my trance when I saw canoeists in the water below me. My previous two instances were two paces from a high speed rail track near Biggleswade and one of the things that had held me back was the impact it would have on the driver of the train. I did not want to hurt canoeists or maybe I did not want to die. I will never know.
On the first two occassions I wanted to end my life I am fairly certain that nobody knew I was in the state I was in. On the recent occassion quite a number of people knew of the state I was in as I had opened up following therapy. The trouble was nobody knew what to do to help. It is hard to understand but one of the reasons I did not jump was that I was held back by not wanting to disappoint my then dead parents. I also wanted to ensure that Karen is cared for in the best way possible.
After my first experience I sought help with a therapist. She was good and got me to understand that I had succeeded in life by solving problems. This sustained my family as in the business world the bigger the problem the more I got rewarded for solving it. There is no bigger problem than multiple sclerosis. For many years I was successful in taking on the continual challenges put in our path. The big early challenges now seem insignificant versus what we are dealing with now but they were big at the time. Karen not wanting to admit defeat and use a walking stick, realising that Karen could feel nothing from an embrace or a kiss and horrible numbness in her body. We lived a normal life and fought these battles together but there was a cumulative toll.
With the therapist I understood that my response to failing to solve a problem was to work harder at it. Then work harder. Two things happened. The first was I did not get solutions. The second was that as this happened more problems came along. Often on top of other problems and before we were able to assimilate and respond. I coped and dealt with things until I reached a point where I fell apart. I saw myself as having failed and eventually arrived at the ultimate punishment for failure which is to end my life.
The problem with my failure is that even though I understand I am not God and cannot solve some problems I still fall in to the trap of believing I have failed if I cannot make things better. Everything I do to make things better has the same result of misery and failure. It is something I don’t seem to be able to accept. I am wired to try harder.
I am trying to plot a course through all this misery and pain. Photographing it is proving to be therapeutic. Seeing images of me or things around me as a well functioning organism (on the surface….and possibly below the surface) gives me a perspective outside myself. The barbed wire above is twisted by force in to the shape it holds. I am twisted by my own force in to the shape I hold and I know that one of the secrets is to untwist some of that shape myself. It is hard.
Writing is also therapeutic. As I develop my project one possibility is a book with words and images. A memoir perhaps. For the time being play some more and explore and let myself progress as if a new born child again.