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.