LIVING WITH DYING EXTRACTS

Chapter 1 THE WORST DAY OF MY LIFE?

Nothing prepared me for Wednesday 18 January 1995. True, I had an appointment with a neurologist to investigate possible Carpal Tunnel Syndrome, a minor wrist nerve problem. But I considered this more of a nuisance than anything else. I was not particularly concerned, as I sat doing a crossword until the doctor was ready to see me.

While I was watching Dr Z examining my hands the strangest feeling came over me. I distinctly heard my father's voice encouraging me through childhood's fears, pains and sufferings; 'Oh dear, oh dear! Big girls don't cry! Especially brave big girls like you!' Over the years it had become a family saying. Now I suddenly felt in total despair. Tears started rolling down my cheeks.

I must have gulped, for the doctor looked up and asked, 'What are you so upset about?' A minute ago I would have been amazed to hear the words that came flooding out. I had no idea how much the last few months had drained me.

'I'm sick of getting one damn thing after another. I'm sick of being brave and I'm sick of being alone. I've had polymyalgia rheumatica since last June, then my osteoporosis became much worse. I have stress fractures in my spine and my back aches all the time. I can hardly stand up straight let alone play golf, and now I seem to have this Carpal Tunnel thing to cope with. All I really want is to be healthy and get away in April to enjoy my European trip.' I went on weeping silently as he continued examining my hands, then, very carefully, my arms, legs and face.

After some time he said quietly, 'This is the part of my job I hate doing. I have to tell you that you will need to go on being very brave. You don't have Carpal Tunnel Syndrome. You have Motor Neurone Disease. Do you know what that is?'

He had to repeat the words twice before I could make sense of them.

'No, I've never heard of it.'

I tried to concentrate on what he was saying, but only the odd word or two got through my distress. I heard 'degenerative...muscles...no treatment...fatal...no pain.'

He opened a drawer in his desk and gave me several pamphlets. 'You'll find a lot of good information in these.'

I was so stunned I could only say, 'You mean I'm going to die? I suppose I'll have to cancel my travels in April! It's all booked and paid for,' I added pleadingly, as if that must make a difference.

'Not at all,' he said. 'But you'll never be better than you are today, so start doing everything you want to while you can. Go on your travels sooner rather than later. Do something unusual for a change - go on the Concorde,' he suggested.

Only a fraction of what I was hearing was getting through. However well-meant, the last suggestion crashed down like a lead balloon. I started crying again.

'How long will I have?' I asked, gulping.

'Up to 10 years possibly. More probably four or five. It's only a guess at this stage. Come and see me after your travels and we'll see how you're progressing.'

For some reason I had a vision of myself eating my very first ice-cream at an Italian restaurant. It was in Cairo - called Groppi's, I think. The kindly waiter beamed at my delight and taught me the Italian word for ice-cream - gelato. Thereafter I took great pride in explaining to people, 'Not "jelly". It's Italian - "gelato".' I savoured foreign travel very early in my life. 'Gelato' also became a catchword to make me smile for photographs.

Beating back tears, I asked, 'How am I going to manage? I live by myself. I don't have a carer.'

'You can stay at home. There are all sorts of assistance schemes available for disabled people.'

'But what about later? Where will I die?' I was panic-stricken.

'In your bed I hope. That's the proper place for us all to die.'

I asked if I needed any more tests. I heard the word 'scan', then a description of a procedure I had never heard of. Seeing my confusion he added kindly, 'I'll be in touch with your doctor. He'll arrange it'. He ushered me out.

A few minutes is all it takes to discover one's life is not going to stretch into a limitless future. I stumbled out into the summer heat and slumped in the car. I could not absorb the enormity of what I'd been told.

My brain switched off, resorted to frivolity. A line from some sophisticated Noel Coward comedy popped into my mind: 'My dear, one simply makes oneself comfortable, relaxes, and thinks of England.' I had no choice either. The thought sobered me down again.

Although my health had not been as reliable as usual over the past three or four years, my minor illnesses had not caused undue alarm. I was only 65, still felt young and vigorous, full of enthusiasm, enjoyed life to the full. I had planned ahead for more travels. But I had to admit I had developed a sense of urgency about everything after my husband, Gref, died in 1991 and, sometimes, a feeling of unease about my present life. It could have been a premonition that it was all too good to be true and couldn't last.

'But this is my life!' I told myself. 'This is what sustains me. I thought I was doing my best...why has it all gone wrong?' Last year I had studied a course in hospital chaplaincy for lay people, to improve my visiting and supporting skills. Why, if I were never going to be able to practise my new knowledge? I was shocked, bewildered, panicky, totally selfish in my disbelief. I fought to stay calm enough to drive home safely.

I thought of my lifestyle. How remarkably things had fallen into place after Gref died. Even before then, I had begun to feel that my home of 16 years in Brisbane was no longer right. It was too large and I felt overburdened by possessions. After his death I sold up without regret, got rid of everything I didn't actually use or specially enjoy, and moved to the Gold Coast to start a new life.

During Gref's illness in hospital and then a nursing home, I realised how many elderly people were alone in the world and in need of support, especially in times of sickness or misfortune. I found myself identifying with their problems, hoping to bring some comfort and optimism into their lives.

Once settled on the Gold Coast, I joined two community support organisations, making hospital visits for my church and mainly home visits for the Cancer Fund. This added direction and purpose to my life. It was good to give something back in return for the many advantages I had enjoyed.

I also helped in church activities, joined some voluntary and social groups, made new friends and enjoyed some travelling. As the grief of bereavement eased, I began to feel much younger than my years, regained my vigour and enthusiasm for living. My life became busy, fulfilling, pleasurable and, I hoped, useful. I was stunned by the thought that it would all be changing, maybe all too soon.

Dr Z had assured me I could stay in my own home. It is a small, bright, high-rise apartment with water views and large views of the sky. The sky fills me with awe at the majesty of creation and a tremendous feeling of freedom. It sets off my imagination. I am unhappy if I cannot see plenty of sky from wherever I live. Water is also an important element to me. 'The strong choose mountains,' say the Chinese. 'The wise choose water.' Water is stronger than mountains. It is interjacent, it permeates, creates change, wears mountains away gradually, as new ideas wear down inflexibility and rigidity. Water refreshes; water is life.

I also enjoy the practical advantage of having shops on the ground floor of my apartment building. 'How convenient if one's sick or can't drive', I had said when buying. How prophetic, I thought as I drove away from Dr Z's.

On the way home I decided to call at my GP's rooms, in case I could see him soon. We get on well and I hoped he could reassure me that things were not as gloomy as I feared. Alas, he could not, Dr Z having already phoned. Dr X was really upset for my sake, saying motor neurone disease was often very difficult to diagnose in its early stages. I had again forgotten the name of my disease and now wrote it in my diary while he was speaking. Upon re-examining my arms and legs minutely he could see what Dr Z had discovered.

All I could think of was 'fatal' and my travel bookings. I took the latter up with Dr X, looking for something familiar to hang on to in my nightmare. He agreed that I should go ahead with my travel arrangements, if I felt well enough. He would also prefer me to go earlier than April, and maybe reduce the amount of touring. But April is the earliest that tours begin in Britain and Europe...

Alarm bells began ringing about this projected trip. It entailed three separate tours from early April until mid-June. I had seen quite a lot of my family and friends in England recently, but I had not toured Britain or Europe for years. Now I craved to see the places I had chosen, before it was too late.

The scan I needed was known as MRI. 'Magnetic resonance imaging,' said Dr X. I wrote that down, too. It was still all Greek to me. I was shocked at the cost. I continued on my way home, feeling even more dejected at the thought of maybe having to cancel my bookings. Somehow, I felt that if I could cling to that I could face up to this fatal disease.

For shock we need shock absorbers. By the time I arrived home I desperately needed someone to talk to, so I reached for the phone. I knew that news like this quickly sorts out those who can cushion the 'shockee' from those who can't. My next phone account showed I made six STD and IDD calls that day - neither my family nor closest friends live on the Gold Coast.

Some could not cope with my news. They had helped me in the past but couldn't now. No one knew the disease. I could not enlighten them much, apart from saying there was no treatment and it would be fatal in a few years. I felt bereft, at one with the lonely people I visited in my community work. I would need to think about my own support system for the future. Self-preservation thoughts filtered through my shock.

The more I discussed my disease on the phone, the more its reality began to make an impact on me. There would have to be changes in my lifestyle right from now for 'I would never be better than I am today,' as Dr Z had put it. I wouldn't be going to the Health Club any more. Dr Z had said, 'Use your muscles for whatever is important to you.'

Gymnasium exercises and aqua-aerobics were already getting beyond me. I might as well return to the shop the new swimsuit I had bought yesterday. If my hand muscles were already this wasted, I wouldn't be able to manage lunch or dinner parties for eight people any more. So, back goes the dinner set I had also bought yesterday. I should cancel my subscription tickets for the symphony concerts. I was not driving with confidence these days, especially the 180km to and from Brisbane at night. These matters kept me busy and were a welcome escape from thinking any more about the future.

Later, I watched the sunset. What a day. Had this been the worst day of my life? There had been other terrible days of shock, grief and loss through news of fatal illnesses or accidents, deaths of infants and those closest to me, shocks occasionally through others' deception and malice, shocks brought about by my own failures.

This one still had not sunk in. Physically, I felt all right. I looked all right. I had no particular pain, apart from my back, which had ached on and off for months. I was not missing anything important, I thought, as I sipped my drink. Yet I knew subconsciously that this was the big one - the one I could never expect to compensate for, rectify, talk down, ignore, get over. This was the end of the line, the one I had to face alone, live with as it killed me.

'Is one's death sentence the worst news one can hear?' I pondered. As a Christian I was not meant to think so, nor did I, for death is the one certainty every living creature can rely on ('and taxes,' say the cynics). It is usually the hardest news for most of us to accept, because it is inevitably accompanied by fear of the unknown, of losing control over our lives, of pain and loss - often loss of what we hold dearest in life, very often by loss of hope.

I knew all these things intellectually, but I did not yet feel any of the emotions. Just as I had never asked, 'Why me?' when extra good things had come my way, I did not ask, 'Why me?' over this. Rather, I asked, 'Why now?' I felt desperately puzzled about what I could have been doing wrong with my life for it to be changing so dramatically for the worse. I felt crushed and terribly alone.

I wept as I recalled the day I first became a widow, 18 years ago. I remembered how it felt when I realised no one really needed me. Alan's death had taken my partner. No longer did I have someone who was my first priority as I was his. The first time I experienced that terrible grief remained the worst day in my life. But this was the second worst.

My heart was heavy. My prayers were by rote. God was a long way off that night.

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