LIFE SUPPORT
(A personal experience)

It was in late September of 1969, when the true meaning of 'life support' became a reality to me; until then, it had just been an oft-repeated phrase of the tabloid press.

When the year began, I was still coming to terms with the successive deaths of two sisters and a brother. All in their late thirties and each had died suddenly during the preceding three years. Their deaths had been caused by respiratory failure, due to the progressive weakening effect of Muscular Dystrophy, (M.D.) on the respiratory system. I was devastated and left with a sense of hurt and anger at the waste of life.

Just as my sisters and brother did, I too suffered from M.D. and by 1 969 had been using a wheelchair for six years. Nevertheless, I had a full time lob and was driving myself to work every day in my battery powered three-wheeled car; watched over by elder brother; who worked for the same company. Life was a challenge and one, which I was enjoying.

However, 1969 was not a good year - my strength rapidly began to deteriorate and every day became one long struggle. My symptoms were all unexplained. My family doctor was away and his stand-in wanted to treat me for nervous depression. I declined his offer of tranquillisers. However, any little exertion left me exhausted and breathless. I lost weight: mainly because eating became more and more laborious, chewing food, a long tiring process, even swallowing liquids was difficult. My hands began trembling and I started to drop things from my grasp. My days too were filled with sudden jolts, for I would keep falling off to sleep and then waking up in a fright. Yet, I became frightened to go to sleep at night - for my nights were filled with terrifying, recurring nightmares and I would wake with my head aching and feeling nauseated. Perhaps the most disturbing symptom was that my ability to concentrate became increasingly difficult. At times, on waking I did not know if I was awake or dreaming; hearing speech, but unable to communicate with the person speaking to me.

Then one day, I found myself trying to focus my gaze onto the blurred face of a man whom I did not know. He was looking at me so intently, who was he, where was I? Later; I learnt that when my brother had called me for work that morning, he had been unable to wake me. By the time the ambulance arrived at the National Hospital for Neurology and Neurosurgery, London, I was barely conscience. M.D. had caught up with me too, and I wanted so much to live, but my past experience of recent deaths in the family convinced me that I too was dying.

I was in the 'Intensive Care Unit' of the hospital and it was the Consultant Anaesthetist speaking to me, his voice was very reassuring. Dr. Beaver's long experience and knowledge of the many neuromuscular diseases which can cause respiratory insufficiency and the nursing team he had built up around him, I still believe saved my life.

I really don't remember being attached to the Cape Cuirass Ventilator. When I awoke, I was wearing a bright blue breathing jacket which encased my chest from neck to thigh, looking not unlike a space-suit. It had a long black rubber tube which seemed to disappear into the
jacket, where my upper chest was. The other end of the tube disappeared into an enormous, somewhat noisy machine, which stood beside my bed. It was making a huffing, puffing, rhythmical sound. However, the effect this strange contraption had on me was nothing short of miraculous. My breathing was no longer laboured, my vision had cleared and my head no longer ached. I had slept normally. I felt great and it was so good to be alive. Each day that followed I became stronger. My mysterious debilitating symptoms had disappeared and it was riot long before my love of life returned once more. The symptoms that I was suffering from, which led to my dependence on a home ventilator are now well documented in medical journals and classic examples of someone who is suffering from oxygen starvation, resulting in carbon dioxide (CO2) poisoning.

To begin with, each of us on the ward had been very frightened at the situation we had found ourselves in. Not being able to breathe is a terrifying experience. I too found all the machinery, which surrounded every bed somewhat intimidating at first, involuntarily listening to the different sounds coming from each of them. Sometimes, on a bad day, my imagination would run riot and a kind of uneasy panic would set in - supposing all the machines stopped working Nevertheless, as I grew stronger and the days turned to weeks, my confidence grew and I began to think more positively.

My brother visited me everyday in the hospital and three months later I left hospital and returned home with my 'Cape Cuirass Ventilator' to take up the threads of my life once again. Although not a cure - but an aid to life - this incredible piece of machinery was going to give me a new lease of life. But for my brother; who was to become my main carer; life would hold new responsibilities, for without his commitment, the sense of pleasure that I felt on returning home would not have lasted.

In 1 975 my brother married, I was very happy for him. They included me in their plans for their future, which I felt was more than I could reasonably have expected.

In 1979 my breathing again caused me problems, during sleep it was found my tongue dropped back, blocking off my airway. My brother suggested, 'we tie a brick on it!' I was not amused - a tracheotomy was the only answer. Today, I am totally reliant on my respirator and this means that we have all become experts at dealing with mini-crises that are likely to occur when one relies on a 'life-support' system for one's every breath.

Thirty years on from when my brother took on the role of carer; he has become ‘jack-of-all- trades' carer; physio, electrician, mechanic, inventor. He fitted my portable respirator to my wheelchair; giving me control over my own space. The simple portable table top he made means I can eat and drink unaided - without this simple innovation I would not be able to raise my sherry glass to my lips.  It also means my beloved computer would be more difficult to access and thus I would be denied all the enjoyment of being in touch with information technology and all the benefits it offers to people like me who have difficulty in communicating in the normal way. Among other things, including the support she gives me, my sister-in-law is now an expert on cooking light appetising meals that Delia Smith would be proud of. l am fortunate in having a great team of community nurses, a caring GP and the support of  'Chelmsford Crossroads Care Scheme', a charity whose main aim is to care for carers, has been invaluable over the years.

Within the restraints of my disability and with the help of statutory caring bodies and the informal care of my family and friends those early days of learning to live with the accompanying background noise of my life-support machine seem a million years away. I still enjoy my life to the full. I try to keep abreast of what is happening around the world. I am a news-alcoholic, people watcher and love a good political debate. At this moment in time, I am in my sixth year of study with the Open University, looking forward to taking my degree in social science in the year 2,001. I have found the OU a truly enabling university who still uphold their original aim of bringing education to all who wish to learn, whatever the difficulties to be overcome.

I have found that this balance between formal and informal care has been a crucial aspect for me,  ensuring that my life in the community has been free from as much restraint as possible and in the process ensured me a great deal of autonomy of how my daily life has progressed. However; it has to be said that community care for me did not begin with the Community Care Act (1991), but thirty years ago when a decision was made by one individual to care for his sister against all the odds.

Joan L. Dillon
October 1999