Print

---

 Copyright ©1999
 The Harfolk Press
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 thanone
copy, send me an E-mail with the details and I will give your request prompt
and serious consideration

MY SECOND LIFE
Chapter Seven, Part 2 of 2
 ADVENT


 Even our idyllic holiday at Blue Sea Lake had its frustrations. We have
been staying with Nell West since Esther's sister Mary and her husband Tony
bought the big cottage on the hill. Nell is Esther's cousin and has been to
me like the sister I never had. She has been totally and unreservedly
accepting of me as Parkinson's steadily progressed through my body. She is a
V.O.N. nurse and is very familiar with Parkinson's - probably more than she
would like to be - and with Multiple Sclerosis. It was her mother, Esther
West, the twin sister of my Esther's mother, who had had MS. Nell's
laid-back manner is very deceptive: it conceals a love of fun and parties as
well as detailed knowledge of what is and is not important in the scheme of
things. These were qualities that Esther and I came to appreciate more and
more as our conditions developed.
 Nell's cottage has an inadequate septic field which can't absorb a full
summer's use. Consequently we used the outhouse as much as possible. I was
determined to co-operate and used it all the time, even when it made no
sense to do so. When it was pouring rain for instance. One night I woke up
at about 3 am and tried to make it to the outhouse, even though my meds were
off and I could hardly move. It was a combination of bullheadedness and
sheer stupidity. I stumbled and fell; no damage was done, except to my
pride. After all, if you cannot go to the bathroom on your own, you're in
pretty rough shape. Anger and frustration welled up in me. I was at the end
of my tether.
 When I got back in the cottage, I stumbled to my bedroom, got a cheque,
made it out to Nell and signed it, leaving the amount blank. I had made
quite a commotion, so Esther and Nell were awake and were worried about me,
wondering if I had hurt myself. I brushed aside their questions and shouted:
"Take this cheque and fix the bloody septic field so it can be used all
summer long. I damn near killed myself out there."
 They both started crying. "Bill", said Nell, "we were worried about you;
you could have hurt yourself badly."
 It was an emotional scene. I realized slowly how stupid I had been, taking
such a high risk to satisfy my stubborn pride. I had to face the fact that I
was disabled, nearly crippled.
  During the summer my condition continued to deteriorate and I was being
tried on liquid Sinemet, in the form of a cocktail comprising Tang, ascorbic
acid, and Sinemet 100/10 and water. This was supposed to be absorbed into
the system more quickly by taking pills, and therefore to cross the
blood/brain barrier more quickly. Only it didn't in my case.
 In late August I described my condition in a letter to Dr. Lang.
  During the course of the last month, both walking and dyskinesia have
deteriorated to the extent that my waking hours are, on an average day, more
off than on,
 notwithstanding attempts to regulate walking with regular Sinemet. I
suspect its use makes dyskinesia worse.

  Two weeks ago, Jan phoned to ask I would be interested in an experimental
neurosurgery procedure which could have the effect of improving walking and
permit a reduction in drug dosages. My answer then was "yes". Now, with the
experience of the last couple of weeks, my "yes" is even stronger. Esther
and I have discussed it as far as we can without my having discussed the
procedure and the probabilities with the surgeon. I look forward to his
call.


 In August, Jan Duff, Dr. lang's clinical trials co-ordinater, gave me a
date for surgery, October 27, and said that I would have to come to the
hospital for baseline testing about two weeks before. The idea behind the
tests was to have a benchmark against which the doctors could measure my
post-surgical performance. One aspect made me very apprehensive: I would
have to go off my medications for about twelve hours. I would probably be
completely incapacitated and would see more fully than I could bear how far
Parkinson's Disease had progressed in me, and how utterly dependant I was on
drug therapy. I should not have worried about that. For a period of time in
early October there was doubt about my making it to the starting gate, to
say nothing of winning the race.
 At about this time, the subject of assisted suicide was very much in the
public eye. It was an approach to which I strongly objected. A British
Columbia woman with terminal Multiple Sclerosis who wished to end her own
life had carried on a campaign with dignity. At about the same time, Erwhin
Krickhaln, a patient with a chronic and terminal neurological condition and
a pathetic individual to boot, had carried on his campaign with all the hype
and dignity of a circus freak show and received a lot of publicity. He had
proposed selling his story to the press and admitting certain member of the
press to witness his assisted suicide. A article sympathetic to Krickhalm
and the subject of assisted suicide had appeared in The Globe and Mail. I
wrote a letter of reply to the editor which was published.

 A private act has been turned into a public spectacle ... Death is the last
act of our temporal lives. With the abolition of public executions in the
nineteenth century, even criminals were allowed to die in privacy. What
right does Mr Krickhaln have to impose the act of his death on the public?

 At this point may I say that I have some knowledge of the manner in which
neuro-degenerative diseases affect those that have them. I am 50 and have
had Parkinson's disease for 13 years. My mobility becomes more constrained
with each passing day. For about half my waking hours I cannot walk
unassisted if at all, and my situation is not unique. I do not despair. I
have never contemplated killing myself. Nor do most men and women with
complex neurological diseases.

 Articles like this one do a grave disservice to the thousands of men and
women who do not let their diseases defeat them; who with little more than
their own initiative to guide them surmount the obstacles their diseases
place in front of them. Indeed, articles such as Sean Fine's could give
newly diagnosed patients the impression that suicide is the preferred course
of action in the long term. Nothing could be farther from the truth. Courage
and determination have not been tried and found wanting. They have been
found difficult and left untried.

My views on assisted suicide haven't really altered in the years since the
article and my letter were written. I still feel it is giving up on life at
a time when the prospects seem utterly bleak. I am an optimist.  The
American surgeon Sherwin B. Nuland, in his wonderful book, How We Live,
expresses the point very well:

 A disease presents itself in a unique form in each person it attacks, and
it pursues a unique course. Every good or bad prognosis is a statement of
probability, not of fact. .....Whether the number appear favourable or foul,
the outcome of your or my sickness is ultimately decided by unknown factors
within us. They will probably remain unknowable for decades or even
centuries to come, if not forever.

In our society, the emerging consensus is increasingly in favour of
permitting assisted suicide for patients in narrowly defined terminal
situations. But I think the opposing views should continue to be heard.
 My letter to The Globe and Mail shows, as clearly as anything can, the
extent to which I had turned the tables on Parkinson's. It no longer ran my
life. In fact, despite the many frustrations, I was becoming almost manic in
my approach to life, feeling there was so much I wanted to do - no, felt I
must do.
 My biography of Archbishop Clark was close to completion. Ted Scott had
discussed the final draft with a quartet of editorial readers: Stephen
Booth, Eugene Fairweather, Michael Hicks and Barry Valentine. Editorial
changes were made and the final draft was sent to the Anglican Book Centre.
Its response was delivered to me second-hand from Bishop Jack Bothwell, who
was readying a book of his own for publication by the ABC: "Tell Harshaw
that he might want to leave a copy of his manuscript with General Synod
Archives."
 On the delivery of that insult, I determined to publish the book myself. As
I quickly learned, there is more to publishing a book than just paying the
printer's bill. There is typesetting, design, distribution to be arranged,
publicity, International Standard Book Numbers ... the list seemed endless.
All these things had to be done in October and November if I wanted the book
out in December. Friends pitched in. Julian Porter helped with choosing the
printer, my account manager at Scotiabank played a key role in negotiating
the contract with the printer, Peter Paterson organized the photographs and
the layout and Joyce Hamilton designed the book and the cover.
 That summer, 1993, I found myself again reminded of how ineffectual
Parkinson's was rendering me. I had been a member of Synod, the governing
body of the Anglican Diocese of Toronto, for over twenty years. The 1993
session was controversial, in part due to me. I wanted to raise a
constitutional issue: on a vote would "refused ballots" be counted as cast
ballots or spoiled ballots? A refused ballot is one taken by an voter, and
immediately turned back to the scrutineer unmarked. Traditionally, in
Anglican Church procedure, refused ballots were treated as spoiled ballots
and not counted. In civil politics, at all three levels of government, they
are treated as cast ballots counted. I believed this principle should apply
to votes at Synod. As I am a Bishop's appointee to synod, I informed him and
the Chancellor, the chief legal officer, of my intention to ask that refused
ballots be counted as cast ballots. I did not want to blindside either one
of them.
 Rising - that's an ironic turn of phrase - "Slowly and haltingly got up"
would be better, on a point of privilege, I gave my speech in an almost
inaudible voice, rushing my words together. I felt embarrassed. My point
would be lost. and what was more important to me, the world, or at least the
members of synod, could see how incapacitated I had become. The Bishop came
to my rescue, asking the Chancellor to read my remarks, which I had typed
out. He read my statement perfunctorily and then dismissed my request as
inappropriate.
 Stephen Booth asked, "Is that a ruling?"
 The Bishop nodded to the Chancellor. The Chancellor replied, "Yes, My
Lord."
 A second priest asked: "Is the ruling subject to appeal?"
 The Bishop nodded again.
 "No!" said the Chancellor.
 At a break in the session, friends congratulated me in taking what was
bound to be an unpopular stand against the Bishop. Nonetheless, I was still
humiliated; I felt I had been patronised by the Bishop and Chancellor
because of my Parkinsonian disability.

During this summer and autumn, Esther was in comparatively good shape. The
serious MS attack she had the previous December had abated and she was now
back to being a school trustee, albeit at a slower pace than before. She
told her colleagues and others that she was "temporarily otherly-abled."
 On the last Sunday in September, just a month before my scheduled
operation, I staged a lunch for my dining club, the Alderbrandin de Sienne
Society. Esther had an appointment the next day with an MS specialist in
Buffalo, so she wasn't there - Gillian Booth acted as hostess. Eighteen for
lunch - I would be testing myself even if I did not have Parkinson's. The
menu was melon soup, leg of lamb, and a cold Grand Marnier souffle and the
wines were an '89 Ockfener Bechstein Auslese, '80 Romanée Saint Vivant and
'76 Reisling Beerenauslese. I did all the cooking, but hired two maids to
help serve. The eighteen of us sat at the dining room table and at two
bridge tables. The lunch went well, indeed, all went well. There were
leftovers of everything and I took them over to John and Dianne Vanstone's
for dinner. It was a perfect day. I had pulled off the lunch party!
 I woke up at 2:00 am the next morning with no strength in my left side at
all. "Shit! ... have I had a stroke?" was my first thought. I made it to the
bathroom, which was why I had wakened, and back to bed with great
difficulty. I can't have taken the idea of a stroke very seriously because I
got back to sleep in no time. When I woke up in the morning, about a third
of my strength had returned. I fussed and fumed all morning trying to decide
whether or not to tell the doctors. I was afraid the incident would lead to
postponing or cancelling the operation. I finally did the responsible thing
and called Dr. Polak at noon; about half my strength had returned. He saw me
at 3 pm by which time about 75% of my normal strength had returned to my
left side.
 Dr. Polak examined me thoroughly but could find no explanation for what had
happened. He then diagnosed it as transitory selective muscle weakness (I
later learned that is what they call something when they don't know what
causes it), and assured me that there were no implications for my pending
operation. "But, I'll phone Tony Lang and let him know." That was on Monday.
Lang saw me on Thursday at noon; usually it takes three months to get an
appointment with him.
 When he asked me to get on the examining table, I leapt up, doing a half
turn in mid-air, like Baryshnikov, at least I thought I looked like him.
 "Show-off" said Dr. Lang, cooly. His examination of me was comprehensive
and led to one conclusion. "There's probably nothing wrong with you, but I
wouldn't want you to have a stroke on the operating table. I'm putting the
operation on hold pending the results of some tests you're going to have."
 My fears of having my operation deferred were realized. Ontario's medical
system was being subjected to an economic squeeze referred to, without
irony, by the premier of the time as the Social Contract. The tests could
not be done for two weeks, and the results would not be to hand until the
end of the month. And I hadn't even had my baseline tests that were to
precede the operation. But, despite the delay, Providence was on my side.
The tests showed there was nothing to prevent me from having the operation.
The problem now lay with operating room time. The Social Contract again.
This was elective surgery, i.e. it was not required to save my life. The
hospital had to put elective surgery on hold. It looked like I was going to
be put off until the New Year.
 I did not take this lying down. On October 21, I wrote to Dr. Lang.

 I was taken aback yesterday when Jan Duff told me that I would not likely
have surgery until January next year, a delay of at least two months; the
delay being due to the Social Contract causing the hospital to close the
surgeon's operating theatre for December and half of November.
  I am shocked and not a little depressed that, after the matter leaves your
hands and enters the bureaucracy, it will take four weeks to order and get
back test results, when surgery time had been booked for October 29.
  As well, the effect of the Social Contract on health care is a random
shock that you could not have factored into your plans; I was naive enough
to think "it will not effect me". I do not envy you and your colleagues as
you are forced to practice triage that has a political imperative rather
than a battlefield cause. Perhaps it is a different battlefield, one few of
us are equipped effectively to deal with.
  Of course, I will manage until surgery can be scheduled. My mobility is
increasingly constrained. As I write - it is now 11:15 am - I have been up
for seven hours and will not likely be "on" until early afternoon, and then
there is no guarantee how long I will be "on".

 A few days later, in a moment of intense frustration, I said to Dr. Lang
and Jan Duff: "If you're in line to see a movie and you leave to take a
leak, when you return, you resume your place in line; you don't go to the
end." My remark seemed to have the desired effect. I was booked for testing
on November 8 and 9, with the operation scheduled for December 8.
 On October 31, I had turned 50. To celebrate, Esther had a lunch party for
me on November 7. There were 60 guests. It began at one and ended about
five. The day gave me a real lift. The big surprise came when I was
presented with a Certificate of Merit by Bishop Finlay for my service to the
Church in the Diocese of Toronto.
 The next day I set off to the hospital for the pre-operative testing. The
procedure was exhausting but fun. Most of the time the first day was taken
up with neuropsychological testing - things like word association,
short-term memory, relationships between shapes, abstract thinking, and
numerous other tests to establish a cognitive baseline of data against which
my post-operative neuro-psych tests would be measured. A few of the answers
were "non-standard", that is, they did not conform to standard responses.
For instance, in a verbal association test when the word "fabric" was given,
I responded "church", because it is the traditional term referring to the
construction and maintenance of church buildings. The neuropsychologist who
was administering this battery of tests did not know what to make of me.
When the testing was completed, he consulted Dr. Jean St. Cyr, the chief of
the service. St. Cyr's assessment: "Mr. Harshaw, you are very bright, if not
brilliant. You are also a bit of a smart ass." I did not demur.
 I stayed overnight in hospital. The next day I was to do the neurological
tests which were what I had been most apprehensive about. They involved
being "off" medications, so my meds were withheld from 10 pm the evening
before until Jan Duff had done the "off" tests on the following morning.
That meant no Sinemet or Pergolide at midnight, 2:30 a.m., 5 a.m. and 7:30
a.m., my normal nightly regimen. "Off meds," the phrase was enough to strike
terror into my heart. I didn't know what it would be like but I imagined
that I couldn't do anything by myself, not even pee, or brush my teeth. And
it would show me how completely dependent I was on medication for what
little mobility I did have.
 All this was true, although the anticipation was much worse than the event.
I was still terrified. As I could not move, I had to be bathed by an
orderly, and eating breakfast was difficult. Jan came to get me at 8 am with
a wheelchair. I certainly wasn't going anywhere on my own! We got up to the
Movement Disorders clinic and the tests began. The tests, which were
videotaped included walking, standing up without assistance, balance,
various tests of muscular rigidity and a speech test. After those tests, I
was scored between the eightieth and eighty-fifth percentiles. That meant
only fifteen to twenty per cent of Parkinsonians had worse symptoms than me.
No more slow marches; Parkinson's was going through me at double time.
 I was frightened by those results. If the operation wasn't successful I
realised there was the likelihood that I would sooner rather than later be
incarcerated in a chronic care institution, not being able to see or write,
with my speech being impaired. I could be cut off from the world and the
world would be cut off from me.
  Esther says that I have never complained about Parkinson's. But I did my
best to hide my anxiety. If I accuse Esther of being a good actress, I am
guilty of the having the same skill. During the previous couple of months I
had been so busy with getting my book published, and getting organized as
Vice-President of the Toronto Chapter of the Parkinson's Foundation (which
is described in a later chapter) that I ignored my disabilities. How long
could I expect to do this?
 In fact, I was so concerned with the book, that Peter Paterson and I met at
lunchtime on the day I was having the neuropsychological tests and he
brought the layouts for the photographs over to the hospital that evening.
 Later that same evening, Dr. Ronald Tasker came to see me. He was the
senior functional neurosurgeon at the Western. Neurosurgeons are reputed to
be prima donnas in a profession where arrogance is assumed to be a sine qua
non. As a group, they are probably brightest of the best, simply because the
brain is the most complex organ in the human body and it is the last great
frontier of medical science. I have now got to know three of them. Rather
than arrogant, I have found them single-minded in their pursuit of
understanding the brain, and singularly compassionate in their dealings with
patients.
 Dr. Tasker,the doyen of the very small and exclusive fraternity of
functional neurosurgeons around the world, was a balding, slightly portly
man wearing a turtle neck sweater that was his trademark. I learned that he
was a keen ornithologist.  That evening, in what I thought was a desultory
sort of way, Dr. Tasker and I chatted about my upcoming pallidotomy. I later
realized that his laid-back style was calculated to relax me and give him
the opportunity of assessing for himself whether or not I would be a
suitable candidate for the operation. Like many surgeons, Tasker felt his
own judgement was a key factor. Indeed, he would book patients referred from
outside The Western without the pre-op work-ups. It was not arrogance;
rather it was confidence in his ability as one of the most innovative
functional neurosurgeons of his generation.
 My surgery date, less than a month away, was confirmed.

5426 words