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MY SECOND LIFE

Chapter Six




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.
 In the month following the telephone diagnosis, Esther had increasing
difficulty walking. She got progressively worse as Christmas approached. We
were both very concerned. Parkinson's had advanced a fair bit in me, to the
extent that I couldn't walk without a cane for several hours each day, and
sometimes not even then. Just before Christmas, when the children would be
coming home, Esther called Dr. MacDonald's office to tell him of her
inability to walk. She was concerned about the childrens' reaction to coming
home and finding that neither parent was mobile. Over the telephone,
Prednisone was prescribed. It is a steroid drug which is supposed to
moderate inflammation. It provided some relief, but produced internal
bleeding as a side effect. Over the phone, another drug was prescribed to
deal with the internal bleeding. Not for the first time, I was very
concerned with the quality of medical care Esther was receiving.
 In January, 1993, Esther saw Dr. Trevor Gray. He had been highly
recommended by the friend whose wife had died of MS in 1981. He confirmed
the diagnosis, although with less enthusiasm than Dr. MacDonald had done. As
Esther recovered from the attack of paraplegia, which we wanted to treat as
an exception, we both tried to imagine how she could adjust to living with
MS. I felt she would have to deliberately conserve her energy and lead a
quieter life. If she adopted a routine and followed it, it could make a real
difference. But that was not easy to do as a School Trustee.
 She had taken a leave of absence from the middle of December until the end
of January to get over the paraplegia and to try to get used to the idea of
having MS as a life-long companion. While I tried to be supportive, my
Parkinson's was progressing fairly quickly, so I wound up being resentful
that I had to share the limelight of sympathy and understanding. I am
ashamed now to realise that it was quite a long time, and a change in my own
circumstances, before I really began caring for Esther properly. I was very
good at laying down regimes for Esther to conserve herself that I now have
to acknowledge, were really designed to help her care for me.
 At my next appointment with Dr. Lang, the first thing he said after hearing
the news of Esther's diagnosis was a compassionate, "We have a duty to keep
you mobile as long as possible." He went on to say that there were a number
of options for me, including surgery.
 It was a positive approach that I appreciated, but I was not emotionally
ready for surgery yet. Was he out of his mind? There was no way I was going
to let anyone muck around in my brain. I was beginning to think that there
actually was some good stuff up there. After all, my head was a size eight
and a quarter and I had always had trouble getting a hat to fit. And
everyone knew of someone, or at least knew a story of someone, who had been
totally screwed up by neurosurgeons.
 One thing I was not being considered for was the then current great hope
for some Parkinsonians, a fetal transplant. The theory was that adrenal
glands from aborted human fetuses could be placed in the brain, implanted,
and that they would grow and replace the dead dopamine cells in the brain.
This raised difficult moral and practical problems regarding the
availability of fetuses. The spectre of "fetal harvest" has led to
fascinating research on porcine fetuses, growth factors, and several other
innovative approaches to what is essentially a surgical approach to dopamine
replacement therapy. While some progress has been made on the technology of
transplantation, the fact remains that fetal transplants are significantly
less successful in percentage terms than surgery involving lesions of brain
tissue or brain electrical circuitry.
 After Esther and I began to adjust to the news of her diagnosis, we
realised that we had to face the question of how and where we should live.
We had been in our house on Belsize Drive in North Toronto for sixteen
years, and we liked it. Our preference was to expand it so that Esther and I
and the children who were now fully grown, could continue to live there and
to renovate it so that Esther with her MS and I with my Parkinson's could
more easily move around in it. The two could combine in an awesome synergy
if, for example, Esther had a period when she needed assistance walking
which coincided with one of the "off" periods for my medications; we would
both be immobilized and neither able to help the other. We explained this to
John Vanstone, our friend and architect. I strongly resisted the idea of
"grab-rails", saying that I did not need them, but I realised that at least
we had to make the house barrier free, that is, fully accessible to a
disabled person, if we were to continue living there.  John's first design
seemed too expensive, so the summer of 1992 was spent looking at
condominiums, duplexes and the resale market in houses. Those alternatives
were no better, so we were back to considering a renovation.
 In the previous two years, my mother had died and I had settled her estate,
and my two aunts had died leaving me William Boyne's literary estate and the
massive collection of prints and engravings that he had accumulated. As a
result, I inherited bequests which eased our financial position, enabling us
to proceed with the renovation.
 Our first idea had been that the house would be extended by eight feet,
which would enhance the kitchen and dining room and give more space on the
second floor. We wound up gutting the whole house - the living room was the
only room that wasn't structurally altered - and added approximately 1,000
square feet. We extended the back of the house on the basement, first and
second floors. We went far beyond just making it barrier-free. It was to be
a total renovation. We had to move out of the house for ten weeks in
December, January and February while the construction was at its busiest and
most frantic.
 On a friend's advice we took the kitchen, main floor powder room and
upstairs bathroom away from our contractor and gave the job to Chris and
Gord Smith. They are artists - Gord is one of Canada's leading sculptors and
Chris is involved in installation art - but they are talented artisans as
well. The results were spectacular. All three rooms are barrier-free, yet
you would not know it to look at them.
 One thing that Esther's diagnosis had convinced us to do was to install an
elevator running from the basement to the second floor, with stops at every
level, including the driveway. Dr. Polak convinced us. "What would happen to
your mobility if you sprained or broke an ankle? You would have a big
problem. Put the elevator in."
 We moved back into the house about the middle of February.
One of the first things we noticed was that one of the small drawers in
Esther's dresser was missing. We then found that all of her good jewellery
was missing. It was quite old and valuable, most of it handed down to us
from either her family or mine. We then realized that the drawer had been
stolen too - to carry the jewellery in. And a telephone and a new Fax
machine not even out of its box.
  The police came; then the insurance adjuster and finally the cheque which
inevitably only covered a fraction of the loss. Over the course of the next
two years we discovered, indeed still are discovering, the true extent of
what was stolen. We have concluded that the robbery was not a quick "grab
and run"; rather it was well-organized over time. In our innocence, we
trusted everyone, from family to casual workers to our contractor and his
crew. We do not know to this day who was responsible for the robbery.
 In retrospect, we had picked the worst time to renovate imaginable. Both
Esther and I had a total lack of energy, so things were not packed away as
they should have been. Fortunately, our silver was stored at a friend's
house. We could not have been thinking very clearly or we would have emptied
the house and put everything in storage. But we didn't.
 The stress of the renovation was ongoing, for the painter and landscapers
weren't gone until mid-June. It is one thing to plan a renovation; it is
quite another to make it work. We set about that by scouring design
magazines and hiring a young interior designer to give us ideas. I took
charge of the design because Esther was so depressed and preoccupied by MS.
Actually, she probably realized how much of our capital was being consumed
by the renovation.
 Fast on the heels of discovering the robbery, we decided to make a big
change in our life. We sold our car. Earlier in 1992, I had begun to have
the feeling that my driving was degenerating. Several people had told
Esther, under a cloak of anonymity, that I should stop driving. I paid
little heed to them, partly because I wanted to keep on driving. Only one
friend, Bruce Marshall, had the courage to risk our friendship and tell me
directly that I should not drive. "You are a menace on the road, Bill. For
your own safety and that of others, you have got to stop driving." I was
initially annoyed with him for saying that, but I slowly appreciated the his
open directness. He was right. My decision was not even based on accidents,
although there had been a few small ones. I simply decided not to drive any
more because, even in my eyes, I was no longer safe on the road.
 Now, for driving purposes, Esther was declared blind. She had seen her eye
doctor and was shocked when he said, "Mrs. Harshaw, I must ask you to turn
in your driver's licence." While Esther had not been driving for some time,
the shock of having her licence actually taken away was immense.
 We had to learn to live with and, as best we could, enjoy the consequences
of our limitations. Shannon Graham and Dianne Vanstone, the wives of my
friends Tony and John started taking me shopping - to the St. Lawrence
Market, the Price Club, Loblaws, and so on. It was fun and I remarked at
Esther's 1993 birthday party that I saw more of their wives than they did!
 Learning to accept the help of friends was one of the lessons we had to
learn. Learning not to depend on that help and not to take it for granted
was another. I came to realize that I was using my friends as my personal
support group. I hadn't gone to them and asked, "will you help me cope with
Parkinson's by being my support group?" They just offered of their own
accord: Stephen Booth, Ian Hamilton, Howard Shill, Tony Graham and a number
of others.  What I did not think about at that time was that there are many
Parkinsonians who do not have a supportive family or group of friends.
 During the most intense period of the renovation, from November through
February, we had moved out of the house and into the Royal York Hotel. It
might seem a lavish alternative but in fact it was practical - the hotel
offered us an attractive rate, and we needed the services it could provide.
My Parkinson's had been progressing rapidly, with violently contrasting
moments of akinesia and dyskinesia depending on whether my meds were on or
off. Esther's MS had led to an attack of paraplegia - she was virtually
incapable of walking. At Christmas, Howie and Emily, back from their
schools, stayed at the hotel as well and saw us at our worst. A cousin of
Esther's, Nell West, also stayed with us over Christmas.
 One evening, when neither Esther nor I could walk very well, we were on our
way to dinner in the hotel dining room. Our movement was slow and
hesitating. We must have looked like old people in young bodies.  Esther
could be pulled forward; sometimes when I couldn't walk forward I could walk
backwards. I put my arms around Esther, and said in my best Yul Brynner
voice, "Shall we dance?" And dance we did, in a fashion, to the imaginary
orchestra playing the Rogers and Hammerstein tune from The King and I until
we arrived at our table to the bemused looks of patrons and restaurant
staff. Much to my surprise and embarrassment, they applauded us, not because
we looked like Fred Astaire and Ginger Rogers, but because we got there on
our own.

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