The Big Deal

The following piece was written in response to a request from the MND care and research term for a piece to be read at a meeting of the local community teams and doctors on the 22 May, on what it was like for me living with MND. Obviously I didn't read it!

The Big Deal

In speaking to an audience of those engaged in the research and care of MND, I presume we are all aware of the accepted psychological presentations in the coping with terminal illness: denial, anger, anxiety, bargaining, and acceptance. The list is in no particular order except the last: the realisation and emotional acceptance of the fact that one is dying. Sometimes the response to the diagnosis is one of denial. I did not travel this path as I knew, to a certain extent what was happening through the various stages of diagnosis.

The next response is one of anger. Why me? Why not? I was not particularly angry as such but I did resent and do resent in an envious way the people I meet who can still do all those things I can’t. I can't speak anymore so the possibility of holding a fluent conversation with someone is now not possible. It is also not possible to express one’s thoughts and ideas with any sophistication or finesse. “Oh how I would love to have an argument? " However, I can communicate with the text to speech app on my iPad. It is moments like this that I feel the anger bubble up and the frustration. This also has another effect: a feeling of isolation and it is so easy to silently, slip inside myself and let all about me flow past. In group situations I can feel “left out" and this makes me sad. I see myself in the distance. This sadness is another aspect of depression. I can allow myself sadness, and sometimes deep sorrow, because through it I can cry and relieve the psychological tension and smile at myself. A note on the I Pad -I was loaned this device with speech app by the Speech and Language Service. I have since bought my own and it is now, literally, my window on the universe.

An aspect of my condition of course is emotional lability and I can cry at the drop of a hat and sometimes hats are dropped in inappropriate places. The performance of a children's choir, the kindness of a friend or the sudden fear of a visit to the dentist occasions a flood of tears. There again my wife is there with a rueful smile or a gentle hug. Nora grants me the freedom to be what I want to be and so conserves my self-esteem.

When this all started I began to keep a journal after reading about Joss Ackland’s wife. A friend saw what I was doing and suggested I start a blog: a personal journal posted on the World Wide Web. It was a way of making my voice heard. I started out aiming to give my response to the world, to find something beautiful in a darkening world, mainly in short pieces of poetry. The pages are read across the world by friends and a great number of anonymous readers. The main response has been to keep going. Some people find them inspiring and read me every day. I almost feel responsible to publish something every day for those people who like to start the day with me. This has given me a purpose when it would be so easy to feel useless and worthless. I will continue until my finger has ceased to be able to touch the keys of my iPad. It is my strategy for keeping sane. I do feel useless in the face of buttons, zips, bottle tops and using a screwdriver. I can’t use a urinal now as my fingers can’t manage my clothes fastenings . I surrender.

And then there is not being able to eat: the burden of bacon frying and knowing I will never be able to eat another bacon sandwich or the drifting aroma of Coq au Vin from the kitchen, make me bite my lip and keep a smile in my mind's eye for those who will have the pleasure of eating them. I bite my lip quite often as the result of jaw muscle spasm and that does make me angry. Sitting round a table and chatting over food and wine is a basic human activity and this has been stolen from me. There is no substitute so I try not to look, no need to whip myself. I manage soft dairy foods and my delight is a sweet espresso coffee.

I am fed through a PEG three times a day, which is no big deal except when the hole becomes infected and smells like a drain or the inside of a dustbin. The fitting of the PEG was no holiday. I have now grown used to being told that an improvement in my quality of life is simple and then it results in a week’s stay in hospital.
I have reduced respiration so I retain carbon dioxide and I had a stay in Preston to be be provided with a ventilator for use at night. Then I spent a twenty four hour stay in Aintree on a bed of nails while having blood taken from my wrist and then a return, weeks later for a new mask. This one is fine and assists sleep although the harness bites into my left ear. I don’t feel sleepy in the afternoons now but on the other hand I miss an effortless dreamless sleep for two hours. Then there is the growing fatigue which swallows my intentions and the slow unsteady walk which saps my strength. It is a slow disintegration bit by bit.

So I have dealt with denial, isolation, and depression but the other common strategy is bargaining.” If I do this God, will you do that? I don't waste my time down this blind alley.

Finally, and you are probably saying. “Thank God for that!” I come to acceptance.
Once I was stopped in the street by a person I know who is a member of my parish. She said "Do you thank God for this gift? My comment was, “No not really”, while internally I was thinking, "Sod off you stupid woman!" Now I am not too sure. It has certainly given me the impetus to write creatively for a definite purpose.

Here I will embark on trying to explain my spiritual approach to managing the slow dying process of MND. I am a fully paid up member of the Catholic Church though certainly not uncritical. I had heard of people who had lost their faith in the face of HIV and MND. This is relevant to all faith traditions, be it Christianity, Islam, Judaism or Lao Tse Taoism. I try to keep in touch with my spiritual side whenever I am really challenged in my feelings. I believe in the transcendental nature of the human spirit. There are numerous learned articles in the,” American Journal of Holistic Nursing” which are relevant to spirituality in the care of the terminally ill. I find my spiritual awareness to be a good fall-back position. I consider myself to have a spiritual dimension. Death is not the problem. It is germane to the human condition. It is the process of dying which causes the apprehension. I am dying bit by bit. I just pray that I have the strength to stay the course with some personal dignity which I can create within myself when my body suffers all the indignity. For this I will hope for the assistance of those about me.

In doing some research on spirituality and care of the terminally ill, I was amazed to find almost 1500 citations since 1995 and an article on “a grounded theory of spirituality and care, for undergraduate nurses as a part of holistic nursing”. …Assisting patients spiritually is a growing focus. This was taken from an abstract in the present issue of the, “Journal of Clinical Nursing”.
“Research on spirituality and health needs to move forward in a systematic and coordinated way." JCN July 2006.

So there you go.

They also asked to use the "Majesty" poem from the blog on 10 May.

JL May 26 11:22