This work is copyrighted by my business name, The Harfolk Press. Conseqently, I must insist that you do not make any copies, except one for your own private use. If for any reason you want more than one copy, send me an E-mail with the details and I will give your request prompt and serious consideration. Bill MY SECOND LIFE Chapter Three: Coming Out Part One In May of 1984 I had my first appointment with Dr. Tony Lang at The Toronto Western Hospital's Movement Disorders Clinic. Lang's clinic was busy, and there was a sense of organized chaos about it. Somehow it seemed warm and friendly, and it reflected Sir William Osler's description of medicine as "a calling in which your heart will be exercised equally with your head." The "flow" was managed by Mrs. Jan Duff, R.N., who gave life to another of Osler's aphorisms: "The trained nurse has become one of the great blessings of humanity". Before the appointment I had been sent an exhaustive questionnaire to be filled out. It seemed to cover all the medical information one could want to know for assessing a Parkinson's patient and then some. Dr. Lang told me that he wished all his patients took such care in filling out forms. He proceeded to ask questions arising from the questionnaire. I had great confidence in him. After completing the questionnaire and the interview, I felt I had transferred to Dr. Lang virtually all my knowledge of myself. He then called in one of his colleagues, described my symptoms and asked what he would recommend. The other doctor responded with a suggestion to add to the medication I had been taking. Lang commented, "My thoughts exactly." He confirmed that I had Parkinson's. That was not as redundant as it might seem. There are several neurological conditions which have a some symptoms in common, but are in fact quite different. Consequently, approximately one-quarter of all patients initially diagnosed with Parkinson's are later re-diagnosed with another condition. Other possibilities unrelated to Parkinson's, to name only two killers, were Shy-Dragger's Syndrome and Progressive Supra-Nuclear Palsy. Dr. Lang ruled these and then gave me the bad news. Early onset patients, those who clearly have Parkinson's before the age of fifty, have much more rapid symptom progression than do patients who develop the condition when they are older. "Not very pleasant", he said breezily, "but I think you should know this. Dr. Macdonald was right when he told you that Parkinson's is very individual, so I can't be specific about its rate of progress. You might begin considering the possibility that you will have to stop working long before your normal retirement age." The news was not good. But I had been treated as an adult, capable of understanding the consequences of what he was saying. I went away with a new prescription in my pocket, this one for Bromocriptine, a dopamine agonist. There are dopamine transmitting cells and receiving cells, the latter being called receptors. An agonist is a drug which activates a dopamine receptor, extending length of time that the L-dopa medication remains active in the brain, like a catalyst. And at first it seemed to make me feel better. I didn't realise that I was falling into the typical Parkinsonian's trap. Following on my assumption that Dr. Lang was omniscient as far as my case of Parkinson's was concerned, it was an easy leap to the expectation that every prescription and recommendation would be successful. I could not tell that, in some cases, I was experiencing the "placebo effect," the illusion of feeling better simply from being treated. That is why clinical trials of new drugs include "double blind" tests in which neither the physician nor the patient know if a particular patient is taking the real drug which is being tested or a placebo. While I understood at an intellectual level what Dr. Lang was saying about the possible implications of Parkinson's for me, that abstract assessment did not spill over into concrete reality for a couple of years. I still was not ready to accept the fact that I had Parkinson's, and to consider the possible consequences for me and my family. I was almost schizophrenic in my attitude to Parkinson's. I could have an intellectual conversation about chronic illness or Parkinson's, but I would not consider my family in relation to my Parkinson's. As simple a thing as discussing the practical effects of Parkinson's with the children was not on my agenda. Howard, who was now fourteen, and Emily, who was eleven, knew I had Parkinson's, but were unaware, or so I thought, of the implications. In fact, as they observed my condition deteriorating, or, in the perverse language of medicine, progressing, they assumed the worst. One evening Esther, who had been a School Trustee for over two years by this time, had her assistant over for a family dinner. In the course of the evening he talked about an uncle of his who, he said, had died of Parkinson's. He went into a lot of grisly and, I felt, unnecessary detail. What killed him, the assistant said, was his inability to swallow. Apparently all the things that could go wrong in a Parkinsonian went wrong with the uncle and he choked to death on his own saliva. In the middle of his story our guest realized what he was saying and the effect it was having. With each attempt to extricate himself from this tale of horror, his foot became more deeply implanted in his mouth. Howard and Emily, then 13 and 10 respectively, were transfixed by this account of Parkinson's and the death it caused. Howard was egging him on. Each time the man paused, Howard, eager for more information, would say, "Go on!" Later that night, Emily was sitting on the chaise longue in our bedroom with tears streaming down her face. She wailed to Esther, "I'm watching Daddy die before my eyes - he's shaking to death!" It took some time to calm her down. She was convinced by the version of the reality of Parkinson's she had heard at dinner, because it was the only account of Parkinson's she had heard. Up to that time I had said virtually nothing to either Howie or her, assuming in my passive-aggressive fashion that things would work out in the fullness of time, that there was no need to discuss Parkinson's because of the inevitability of it all. There was nothing I could do about Parkinson's, so why discuss it? Both children bottled up their concerns. Emily repressed them. That year, Howard went away to Sedbergh, a boarding school near Montebello, Quebec, and was not faced with the problem on a daily basis. We had not sent him away to school because of my Parkinson's but because we thought he would benefit from a change of environment. After some initial problems, his years at Sedbergh were a great success. Nonetheless, everyone in the family except Esther was now actively involved in denial. The strain on all of us was immense, and it spilled over to episodes of anti-social behaviour for both children. They would each become very withdrawn, exploding from time-to-time when the pressure of denial got too great for them. This put an incredible burden on Esther, whose focus was more inward than the children's. The difference was that she tended to implode, resulting in periods of depression that were almost disabling in their severity. Such was the effect of my denial. My family was becoming dysfunctional. One weekend, Esther and I went to Sedbergh school for a parents' weekend. On the Saturday, after the interviews with the teachers were over, I went cross-country skiing with Howie and a friend and the friend's parents. I was lagging behind. When asked if I was having trouble, I replied: "damn shin splints are giving me a problem!" It was really Parkinson's of course, but I wasn't going to let my secret out to anyone who didn't have to know. As I struggled with my denial of my Parkinson's and the reality of it, I often had difficulty squaring this experience with my Christian faith. Sometimes I thought of the phrase "an outward and visible sign," from the traditional Anglican definition of a sacrament. With Parkinson's it has always seemed to me a cruel irony, because the other half of the definition, "of an inward and spiritual grace" could not be further from the truth. Spiritual grace is "the supernatural assistance of God, bestowed upon a rational being, with a view to his sanctification." There was no grace associated with Parkinson's for me:if anything it was just the opposite. I was reminded of the lines from Archibald MacLeish's play, J.B.: I heard upon his dry dung heap That man cry out who cannot sleep: "If God is God He is not good, If God is good He is not God Take the even, take the odd, I would not sleep here if I could Except for the little green leaves in the wood And the wind on the water About this time I came across an article by Norman Cousins, a distinguished American journalist who had discovered his inner resilience to a chronic medical condition and captured it in a phrase "defiance, not denial". By this he meant that if you accept a chronic illness, and even its inevitable progress, you can still defy it to have a negative mental effect on you, provided a sense of humour is retained. At this time, early 1985, I thought that Cousins was pretty facile and superficial. After all, what did he know? He was only a writer. It took me many years to realize the depth of his experience and to admire his ability to express it in clear, simple prose. What he had done in a humanistic way, was to inject hope, the greatest of the Christian expectations, into a life with chronic medical conditions. For instance, as movement becomes more constrained, the patient should think "What things can I do now that I could not do before? How can I turn my constraints to advantage?" But at this point in my life, I was not thinking of new freedoms or how I could profitably use the hours time when Parkinson's left me immobile. I was far too busy feeling sorry for myself. I had a long way to go. I had no promises to keep, just miles to go before I slept. I knew that Esther's father, Archbishop Clark, had succeeded brilliantly in turning disadvantage to advantage. When spondylitis forced him to take nine months off from his duties as Dean of Ottawa, Clark did not just languish in bed feeling sorry for himself. Instead, he used his time to great profit reading philosophy and theology as well as coming to know his five children better. Knowing that my father-in-law had made a success of his illness was not merely a part of the family's lore, it was part of the Anglican Church's. If that was not enough to put me off, I do not know what would be. It was so much easier to be a failure: no one expects anything of you! If I was not careful, I would wind up with a ruined family and a promising career cut short as my sole legacy. The situation at the Bank was tricky. At work, I was frightened. I'd put myself in a real pickle. By claiming being hungover as the reason for my tremor, I had set myself up for my manager to conclude that I had a drinking problem serious enough to warrant sending me to Donwoods to have it treated. My initial focus wasn't on that, however. I had to correct the bad performance appraisal. My manager would have none of it. Attempts on my part to rewrite it, softening some of the negative comments were greeted with derision. To be sure, there were elements of truth to the p.a., but I felt the picture of me that emerged was a cruel caricature. I finally realized that I had no alternative. I had to tell him about Parkinson's. When I brought up the subject, I told him that I had mentioned it to his predecessor, and that he had seemed unconcerned. "It's getting worse now, as you can see," I said. "Parkinson's is starting to affect my job performance." "I don't want any phony excuses out of you. Just get down to work and forget about excuses." I bought a bit of time when I told him about changing doctors, but his reaction was disappointment at not being able to put the blocks to me. I wasn't getting anywhere with him: once his mind was set on a course of action, he would not let facts alter his goal. Unfortunately, he was determined to get my team as well as me. In fairness to my manager, I must say that I was pretty insufferable at this time. I was by no means a model employee. Despite my efforts not to put my foot in my mouth, or to be too quick with my tongue, I was not totally successful. As I mentioned earlier, our personalities fundamentally clashed. But there was more to it than that. We came from different business cultures. At Wood Gundy and at Molson's, individualism was encouraged and a strong independent personality could flourish. At Molson's there were only three levels between me and the chairman. At the bank there were six. It was extremely hierarchical and there were incredible internal politics. It was a business culture where you stuck to the rule book. My manager had grown up in the bank, loved it, and to an extent had the affection reciprocated. He was a living example of the company man that William H. White had so successfully personified in his 1956 book The Organization Man, and he was always trying to ingratiate himself with senior executives. He knew and followed to the letter, the precise rules set down in the Bank's Manual of Routine Procedure. From his point of view I was a hazard. For example, the Bank has financial reporting requirements in virtually all loan agreements and financial tests, such as working capital ratios, tangible net worth, etc. Most bank employees had systems, ranging from simple to complex, which ensured that they could check to see if the reports had arrived on time and if the tests had been met. He asked me one day to describe my "bring forward system", as these things were called. "It's up here", I said, pointing to my head. And so it was. I kept track of the requirements for my portfolio of companies in my head, without the benefit of hard copy. For him, this was a shocking violation of the system, and pure arrogance on my part to believe that I could keep in my head all the key dates when borrowers had to have their financial reports in.