An Uncommon Life
6 December, 2014 | By Goldie Alexander
Here is a piece I wrote some years ago about a close friend. It was never published:
My friend Bob recently died. As he would have been eighty five this October, his death came as no shock. But what is remarkable is that nature had intended for him to die thirty years earlier. That was when he was diagnosed as suffering from Motor Neuron Disease. In this illness, there is increasing paralysis of the muscles that control movement, and a shortened life expectancy. Yet like Stephen Hawking, who also suffers from this disease, Bob defied the odds to go on living. And the more his body deteriorated, the more his wisdom and compassion seemed to expand.
I first met Bob eighteen years ago. Curled into a chair, he reminded me of a tortoise inside his carapace. What struck me at the time was his youthful complexion and alert blue eyes through which intelligence shone out like a beacon. This was late summer. Even so, his body was wrapped in blankets, his poor swollen feet encased in heavy boots, his legs supported by calipers. That day he’d been feeling rather sprightly. On bad days, even sitting in a chair could be too demanding on his frail body.
Bob’s illness finally forced him to live like a hermit, and except for Christmas and birthdays, he seldom emerged from his room. From his bed, he could observe the flowery bushes on the other side of his window; that plentiful larder for the hungry rosellas, wattle birds and wrens who lived and died in the garden beyond.
Though virtually speechless and immobile, Bob listened to the news, both the shipping and the daily, on his short-wave radio. He knew more about current events than anyone else I’d ever met, and he held strong views on just about everything. He read widely, tapping out his stories, letter by slow letter, on a computer, rarely redrafting as that would have been too physically demanding. Some pieces recalled growing up in Bunbury during the Depression. Much of his fiction was to do with the sea, based on his experiences in the navy during WW2, sometimes unexpectedly erotic; a salutary reminder of how the mind will rove no matter what happens to the body.
Face to face Bob communicated via an alphabet painted onto a see-through plastic board. Conversation was slow. I would chat for a while, then wait for Bob, using a pencil as pointer, to shakily spell out a pithy reply. He was a good judge of other people’s creative efforts. ‘EDIT!’ was his only comment on one of my early pieces of fiction. After leaving the navy, he had worked as an accountant and those few people with whom he stayed in contact sometimes consulted him on business ventures. ‘YES. ‘NO.’ ‘BUY.’ ‘SELL’ ‘DONT.’ Typical advice slowly spelt out on his see-through board.
Nothing isolates the individual more than experiencing long term incapacity or discomfort. Sometimes as I sat there, I would try to put myself in Bob’s place. I would picture the indignity of being fed, bathed, forced to wear a catheter, of lying in one position for twenty-four hours unless someone moved me; my body reduced to the status of an infant, yet my mind retaining the experiences and emotions of eight decades. Perhaps the worst would be an inability to communicate at any length, to be forced to give monosyllabic utterances to complex ideas. Once, after I got to know Bob very well, I dared point to his bed and ask, ‘Aren’t there times when all this gets too much?’
A feeble hand pointed to the alphabet board. ‘IM FINE,’ he spelt out.
The twentieth century has many heroes who have survived to tell their story: Mahatma Gandhi, Primo Levi, Nelson Mandela, just to name a few. However, what separates these heroes from Bob, is that all had a cause to sustain them through their adversities. But say you are struck randomly by an appalling accident or a cruel disease. And if you are an avowed agnostic like Bob, what then will give meaning to your life?
The day after Bob died, I put this to a mutual friend. ‘Maybe it’s just that he knew who he was,’ he suggested. ‘He had a real sense of himself. It’s about not giving in. When he got sick, he just wasn’t ready to die.’
‘That’s my point,’ I said. ‘If you’re a political or a religious victim, you can always live in hope that that one day you’ll be freed. But Bob was confined to the prison of his own body. Imagine not being able to speak, to be totally dependent on others, and to know that nothing will ever change. It’s worse than a life sentence. Most people in Bob’s position would just give up and die.’
‘Maybe it’s about expectation,’ the friend suggested. ‘We never know what we can really cope with until the worst actually happens. Anyone who came into contact with Bob was impressed with his capacity to remain aloof from what was happening to his body, his determination to live as best he could. The rest of us get bogged down with everyday worries. Will I keep my job? Lose weight? Keep my partner from straying? Looked at from Bob’s perspective, these cares are almost irrelevant. Whenever I mentioned something that was really bothering me, he would shrug it off as if to say, That too, will pass.’
We lapsed into silence. Outside, it had started to rain. People rushed past our window. Rush hour traffic was starting to bank up, and cars honked impatiently. We sat there thinking about Bob, about his hard earned ability to detach himself from the worst of what had happened to him; his ability to make the most of what he had; about his patience and self control. A truly uncommon man.
Bob was buried under a pine tree. The tree is huge. Old and gnarled. Storms have weathered and twisted its branches, yet its life force is strong. Good for at least another hundred years.