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Chapter Six Part One Chapter Six SHALL WE DANCE? From the fall of 1991 onwards, I had the feeling life was closing in on me. I was I suppose, close to paranoia. There was no doubt my Parkinson's was getting worse, particularly akinesia - extreme poverty of movement - and its opposite, dyskinesia, (literally "bad movement") the involuntary shaking that is characteristic of Parkinsonians. Generally akinesia came when my meds went "off". Dyskinesia was a side effect of my meds when they were "on." Because of akinesia, I was becoming increasingly constrained, as my legs would freeze and immobilize me. My stride would shrink from a normal couple of feet to a few inches and I began freezing in my tracks. This was frightening because it seemed to happen at random, regardless of whether or not I had taken my medications on time. My ventures out from the house became less frequent and for shorter distances - I would have to estimate the duration of a meds "on" period and guide myself accordingly. I wouldn't dare take the subway during rush hour. And driving was increasingly problematic! After the accident on the way to Blue Sea in the summer of 1988, Emily would not drive with me on the highway, and nor would Esther. My physical world was getting smaller. The attacks of akinesia were disconcerting to others and were inconvenient because I became unreliable. It was a struggle to come to terms with this, but the Clark method helped here too. Eventually I realized that the world would not stop if I was half an hour late. I would just get myself to a place where I could sit down and have a cup of coffee and wait until I could walk again. That was like a revelation to me. Yet, it is so obvious. Ted Scott said to me that what I should be doing was to permit the world to accept me as I am, not with a barrier around me. "People will accept your disability." That was all very well. But I did not relish the thought of ending up like the British Physicist Stephen Hawking who has the full use of his brain, but who is utterly constrained physically. The dyskinesia was a side effect of the l-dopa medications Sinemet and Prolapa. The shaking came from involuntary muscle movements in the arms, legs, hands, feet, head, face and neck. The movements, more like contortions, meant that I needed a clear five feet to walk because the radius of my contorted movement was two-and-a-half feet. At about this time a friend of mine, the photographer Pete Paterson, took a series of photographs which give, as clearly as pictures can, an indication of the extent of difficulty I had moving about when my meds were "off" and just how bad dyskinesia was. In mid-November 1991 Dr. Lang had switched me from regular Sinemet to Sinemet CR, a controlled release form of the medication. Instead of releasing all the L-dopa at once, the CR version released the medication slowly into the bloodstream and then to the brain. It did do that. But, it became apparent hat I needed approximately 40% more of the CR medication than of the regular Sinemet. By now I realized that life was a series of trade-offs. The trade-off this time was more and worse dyskinesia. The autumn of 1991 was time for another re-election campaign for Esther as school trustee. I wanted to use my newly developed skills as a writer. I worked hard writing speeches, draft after draft, trying to get just the right tone, style and content. But Esther had her own ideas and was very hard to please. She even wanted to write her own material! I thought it was preposterous! After all, she was only the candidate. Instead, since workers were scarce that year, I wound up delivering coffee party invitations, putting lawn signs in - and taking them out after the election. Some of our traditional workers committed themselves in other wards, feeling that Esther was not running as hard as she had been in the past. She didn't seem to have the energy to campaign for a sustained period of time, and couldn't go for more than an hour or two without having to take a break. I thought she was getting lazy. What's more, she did not seem interested in the outcome. Esther's financial supporters, however, remained constant. Her fundraisers put in a tremendous effort through all four campaigns to ensure that Esther could finance re-election. This was particularly important by 1991 as I was on my long-term disability pension and so had a substantially reduced income. Allan Portis, a colleague from the Bank, joined the campaign as Chief Financial Officer, looking after the financial control and audit functions, and did a super job. Esther, was pessimistic and held her campaign thank-you party before the election. Her voters came through, however, and she was elected to a fourth term as School Trustee with a record plurality. Yet, somehow her victory seemed hollow to her. There was little of the enthusiasm, boundless energy and bounce that had characterised her earlier victories. I blamed it on the psychiatrist who had been seeing Esther three times a week as a patient in analysis since 1984. She had begun seeing him to help her resolve some problems mainly relating to coming terms with her father's death and with the diagnosis and consequences of my Parkinson's. But now, she would often go for several sessions without a word of feedback from him. In fact, at about this time, Esther was undergoing her own severe depression, which he failed to recognize. Analysis was not the right sort of therapy for Esther. She concealed very adroitly her main reason for needing help: a fear, verging on paranoia, that she was going mad. She felt that the world was closing in on her, yet there was nothing she knew that was wrong with her. At times, she could not move in crowds or walk up onto a stage. There were other disturbing symptoms which she tried as much as possible to conceal or disregard. Her energy level was much lower and she could no longer walk for more than a few hundred yards without feeling fatigued. Sometimes She had difficulty walking and maintaining her balance and her eyes were doing strange things, blacking out for short periods of time without warning, for example, and her vision generally was deteriorating. She was, indeed still is, a superb actress. When the occasion demanded, or at least when she was "on parade", Esther could put on a marvellous performance, stretching her resources to the limit. These virtuoso performances fooled just about everyone, including me and the children. Her symptoms had first begun appearing about ten years earlier, and Esther had been hospitalized twice to try to get a diagnosis. The second time was in 1984, for a drooping of one side of her face and weakness on her left side. When that cleared up on its own accord, no diagnosis was made. After discharging her from hospital, Dr. Macdonald, the same neurologist who had diagnosed my Parkinson's, had said to Esther, "Not much that I can find wrong with you now. Maybe in ten or twenty years you'll turn out having something like Multiple Sclerosis. Maybe not." Nothing more was said. But seven years later the problems were still there. She had given up on an exercise programme because she simply could not raise either leg. Worse than that, she fell frequently. I later discovered that she would often have to crawl up or down stairs, when no one was watching, because she was afraid of falling down - she could not see to put one foot in front of the other. In October, 1992, Esther had another appointment, with Dr. Macdonald and was waiting for the results of some tests. She had heard nothing and was feeling frustrated and anxious. I said to her, "It's been a week since you saw him. Why don't you telephone him.?" I listened to the call. "May I please speak to Dr. Macdonald? ... It's Esther Harshaw ... . Good afternoon, Doctor. ... Do you have the results of my test yet? ... Yes ... what does that mean? ... no doubt in your mind. Thank you. goodbye." Tears were streaming down Esther's face. She began sobbing. I crossed the kitchen and hugged her. "What did he say?" "Dr. Macdonald said I have demylenating multiple sclerosis, just as he thought seven years ago." "Seven years ago! Christ, why didn't he tell you then?" "Don't get mad at me, Bill. I'm only telling you what he told me." It was eerie, weird. The same doctor, Ronald MacDonald, was now giving Esther the same sort of bad news he had given me, but this time over the phone. At least she now knew what was wrong with her. "Do you remember how keen he was about your diagnosis?" "How could I forget?" "His voice on the phone just now was enthusiastic!" To Esther, MS was associated with her namesake aunt, her mother's twin. The aunt's struggle with MS had been a bitter one. Consequently, Esther had blocked that possibility from her mind. Perhaps too she felt unable to cope with each of us having a chronic neurological condition. "Look at the broken towel racks in the bathroom," Esther had said, blaming me for the damage. Only after she had the diagnosis did she confess that she was responsible. Looking back, it is easy to see that the problems she had been having, the deteriorating eyesight, the awkward gait and poor balance, the lack of energy, were all classic symptoms of Multiple Sclerosis. Like Parkinson's, MS is one of the great neurological mysteries. The odds of a randomly selected couple like ourselves having each member contract one of these neurological conditions is minute. However, the fact that Esther's father had both spondylitis and Graves' disease, a chronic thyroid condition, and that Esther also had Graves', significantly increased the probability of her contracting Multiple Sclerosis. But we did not know that at the time of her diagnosis. The only knowledge of MS that I had, other than the story of Esther's aunt, was that a friend's wife had died of it about a dozen years earlier. Now I had to learn. Multiple Sclerosis is a condition of the body's central nervous systems. It occurs when the myelin, a protective sheath around the spinal cord and the nerve fibres in the brain are eaten away, rather like an electrical wire without insulation. The nerve fibres are so densely packed that when the brain's electric current is travelling along the nerve fibres it can short out like an electrical circuit. Which parts of the body are affected depends on which circuits are compromised by the demylination process. It is principally a young person's medical condition. Most patients develop the condition by their early twenties. Looking back, I now realize that the first signs of Esther's Multiple Sclerosis probably came in the early 1980s with her drooping face. There are three types of MS. Esther's is chronic progressive, which means that she does not recover from an exacerbation in a "two steps forward, one step back" fashion. The condition just steadily gets worse. After absorbing the news of the diagnosis we realised that we had to tell Howard and Emily. We were determined not to repeat the mistake we had made after I had received my diagnosis, which was to keep them in the dark. Howard was attending Lakehead University while Emily was doing her final year of high school year at the Lycée Canadien en France. We phoned Howard and got him at his apartment. He took the news with equanimity and sympathy. With Emily it was much harder. The only number we had was the school number and she was called out her English class - they were going over Dylan Thomas's Do Not Go Gentle into that Good Night. Emily fought back tears as she spoke to us. We cried too. Her class turned into a support group for her that day, bonds of friendship with some have lasted to this day. Dr. MacDonald's diagnosis was just that, a diagnosis. It didn't make Esther's condition any better or worse. But we now knew, and had to accept, that in the long run, we would have to cope with more and more difficult conditions. In the meantime, all we could do was to continue living our lives as best we could. There were practical considerations. Would Esther continue as a Trustee?. She cared deeply about the issues and realised that if she resigned she would likely be replaced by someone from the socialist NDP, a possibility which she and I viewed with horror. Apart from the question of who would succeed her, there was the salary of approximately $50,000, one-third of it tax free, which was very important to our welfare, and which would end if she resigned.