What is wrong with me?

by LEN Project Development SP

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.

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LEN

I am a Photographer. As well as taking many photographs I am currently studying for an MA in Photography at Falmouth University. I will direct my attention through the lens of my camera for the next couple of years and see what shows up. I see a photograph as a little bit of magic capturing a moment in time. If successful it surprises and engages your emotions. It tells a story about the wonders of being alive or tells us what we need to change to make it a better world to live in. That is enough for me to get going and then like walking a 1000 miles, which I did across the UK in 2010, or walking 200 miles across Cyprus, which I did in November last year, it is one step at a time.

I was a writer. The title of my unpublished book was ‘You Would Have Done The Same.' It is about a successful guy in love with his wife who lets her die when he discovers her in the process of committing suicide. The title gives a clue as to what I think you would have done. The book is 200 pages long. I found it cathartic to write it but after two years of work and reviewing with agents decided it probably needed another 2000 hours to get the whole book up to the standard of some of the pages. Writing is great but it is a lot of sitting down so I decided to get out and walk, play tennis, play bridge, go birding, watch football at Nottingham Forest, Arsenal and Valencia and anywhere else if I can, meditate, cook and eat. I was a writer who has so far failed to become an author.
I was a young man who loved Mathematics and thoroughly enjoyed getting a BSc at Liverpool University. While there I went often to Anfield and the Philharmonic Hall. I was all set on doing a PhD until I went for interview practice at BP and got seduced by the excitement of an International business career. BP was a great adventure building trading teams and businesses in London, Antwerp, Cleveland Ohio and Singapore. Fabulous people and some great challenges and also very hard work, constant jet lag and lots of fun along the way. I married Karen, my stunning wife, and had the most amazing time with her and our three boys Alex, Tom and Dan. She has multiple sclerosis and we have taken on many challenges together but somehow keep creating a new normal against the horrors thrown our way. She is the love of my life.

After BP I decided to coach senior executives and quickly realized I had a lot to learn
about what makes people tick. I had a fantastic 18 months on the International Programme of the Cleveland Gestalt Institute. A great faculty and a
wonderful group of people on the programme. We studied and worked in Dingle, Singapore, Holland, Cape Town and
Lisbon. This also got me interested in the way we think and make decisions so I studied for an MSc in Psychology atUniversity College London in 2010. The
Masters was in Cognitive and Decision Sciences and I found it fascinating what
we do know but also how much we don’t know about how we think and make
decisions.

I loved coaching and making a difference. I got a number of people to hear themselves, remove some of their own chains and free up the way they thought about the world. I remain fascinated by how people react to and engage with the world. My Masters thesis was why do two people given the same information make different decisions? Put simply, it is because each of us are unique in the way we are constructed.

Since returning from Singapore I found English winters tough so moved to Spain where I now live. The people are lovely, the scenery amazing, food delicious and the sun shines all the time. Almost.

All of these experiences will feed in to my time now as a Photographer. Three motivations I am lucky to have are enthusiasm, curiosity and a continuous interest in learning. All the time I look forward to meeting old friends and making new friends and experiencing this wonderful life together.