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Harfolk Press.  Conseqently, I must insist that you do not make any copies,
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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.