Patients' Stories

An Inspirational Story
From Captivity to Creativity

It was on the day before Christmas 1979 that I had an acute episode of low back pain followed shortly afterwards by sciatica and unpleasant sensations in both legs. From that day my life changed forever.

When the symptoms persisted after surgery, a Failed Back Syndrome was diagnosed but it soon became apparent that I had developed Arachnoiditis. Frequent hospital admissions, investigations and pain control programmes were undertaken over subsequent years without significant of lasting relief. I was locked into a prison of unremitting incapacitating pain, which there would be no escape.

There were times when initial improvement following medical intervention raised my hopes; but inevitably within weeks or even days pain would emerge once more. As time went by I was able to do less and less because of the physical limitations imposed by the spinal nerve root injury.

Despite the crippling pain I battled on with my duties as a full time hospital consultant but eventually recognised the futility of beating against the doors of circumstance as they relentlessly closed against me. I requested early retirement feeling that I had been cheated out of a successful and fulfilling career. I had not been able to start my medical studies until 31 years of age and now I was being forced to give it up too soon. My hopes, dreams and ambitions were shattered and lay in pieces around me. I felt angry, and in deep despair.

It seemed that I was living only to experience pain and this was so physically and emotionally draining that life was becoming meaningless.

Yet I alone carried the responsibility of choice about how to react to what had happened to me.

I could let it control me, making me bitter, unhappy and friendless. Or I could choose to confront it with courage, gain control over the situation, and use it creatively for some meaningful purpose.

At the core of my being I was the same person and while the previous mosaic of my life could never be restored the pieces could be used to create a new design - if I had the will to do this.

The will, however is powerless without hope.

I certainly had no control over the medical situation but I had what Viktor Frankel has described as the greatest of human freedoms - the choice of attitude in any given set of circumstances, a spiritual freedom that makes life meaningful and purposeful. I chose to keep hope alive and to maintain a positive attitude.

I was then able to relinquish anger, assess my losses realistically, and recognise that rebuilding a new life pattern involved firstly acceptance, then doing what must be done in spite of my own vulnerability and no matter how overwhelming the odds seemed to be. The need to "accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference" took on a new meaning for me as I faced the challenge of transforming a negative experience into a dynamically positive one.

The next stage was adaption, a process which had previously occurred haphazardly, being dependent on the circumstances of the moment. It now required a conscious effort to redesign the pattern of my life by modifying my activities within the changed and changing boundaries of the disabilities and levels of pain. The objective pathological changes of the disease process could not be changed but I found that it was possible to alter my subjective experience of it and to control my reactions to it. Thus the illness could be incorporated into my self-image, my life role being adapted accordingly so that it would begin to have some meaning, with the illness actually contributing to my goals and aspirations.

Florence Stroebel-Kahn, a quadriplegic, wrote "you can be angry and scream 'Why, why, why? Why did this happen to me?' and never get any place. The only way to go is to ask 'What meaning does this have for my life?'"

Learning to live a new life in spite of the disease, rather than an abnormal life because of it, includes attention to personal appearance, maintaining a good posture as far as possible, wearing a smile, concentrating on other people's interests, and limiting comments about one's own physical disabilities. It is important for one's well being to reach outside of and beyond the pain, especially when it is not to bad, so that a positive attitude becomes a way of life.

Reinforcement of positive thinking is possible with the aid of music, relaxation techniques, a sense of humour, reading about others who have triumphed over adversity, striving for achievable short-term goals.

Physical limitations are likely to increase over time, and episodes of discouragement and despair are to be expected. At such times one needs to draw on support and guidance from family, friends, health professionals and fellow sufferers.

Renewal is reached when we discover valued aspects of the self and an ability to experience contentment and joy again within the constraints of illness - but separated from it so that we are no longer defined by the disease, and with a flexibility that allows for continued creative and constructive adaption to the severe pain and associated physical limitations. Always keep this thought in mind:-

 "Physical restrictions may hinder me bodily but my spirit is always free to soar. Circumstances do not have the last word in my life". (Selwyn Hughes)

Recommended Reading:

Man's Search for Meaning - Viktor E. Frankl. Hodder and Stoughton. 1962

The Problem of Pain. - C.S. lewis. Collins. 1940

When Bad Things Happen to Good People. - Harold S. Kushner. Viking 1996.

Where is God when it Hurts? - Philip Yancy Zondervan. 1990

Don't Waste Your Sorrows - Paul E Billheimer. Kingsway Publications. 1983  

Beyond Rage - Jo Ann Le Maistre. Alpine Guild. USA. 1985

Seeing Voices - Oliver Sacks. Picador. 1989

An Anthropologist on Mars. - Oliver Sacks. Picador 1995

The Man Who Mistook His Wife for a Hat. - Oliver Sacks. Harper & Row. 1987