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,
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and serious consideration

MY SECOND LIFE
Chapter Seven, Part 1 of 2
ADVENT

 Mornings were a dull routine.
 Immobile.
Many hours would pass until my brain's command
My anxious limbs its tortured message reached.
And permitted steps, first halting
Like a child would take.
 Then runstumble.
Strangers asked:
"What troubles him?
His legs like branches on a misshaped tree
Do move in deformed harmony

 *****

 I was walking along Yonge Street in Toronto one day in the summer of 1993.
Some passers-by would give me an unusual look, some a frightened, uncertain
stare; a few even crossed over to the other side of the street. They felt
threatened by the contortions of my upper body. I was writhing
uncontrollably, like some sort of primitive reptile and my face was
distorted, mask-like. My walking was distinctly irregular, with both legs
limping and dragging and I seemed almost incapacitated. I looked like an
escapee from Wanless's freak show that Robertson Davies so effectively
described in his novel, World of Wonders. My speech was slurred and rushed
as if I was drunk. To people who encountered me I seemed to be
incomprehensible, probably a lunatic, possibly dangerous.

 I didn't fully realize that this was how most people saw me until a dinner
party we had with the Van Straubenzees and the Grahams in December. I gave a
dramatic reading of one of the short stories which I had been writing over
the past few years, and Tony Graham videotaped my performance on our
camcorder. I was shocked at the result.

 For the first time I realised how grotesque and freak-like I was in
appearance. Parkinson's had really disfigured me. I was abnormal. The
contortions of my face and body were more like a person with cerebral palsy,
but without the internal harmony and rhythm that characterizes that
neurological affliction. My face had become an immobile reptilian mask. It
was devastating to me. The tormented apocalyptic visions that William Blake
and John Martin had portrayed in their nineteenth century engravings did not
come close to the way I saw myself. What I felt was more akin to the agony
portrayed in Francis Bacon's Study after Velásquez's Portrait of Pope
Innocent X, the supreme modern representation of anguish and powerlessness.
And the irony of Parkinson's, for me at least, is that the anguish is
emotional - I have never endured significant physical pain.

 Did I rage against God? Not exactly, although I asked why both Esther and I
were afflicted with incurable neurological diseases. I raged against Man.
Who, specifically, did I rage against? The editors at ABC for lack of
editorial direction, the duplicity of my independent editorial readers, and
the thieves who robbed our house while the renovation was going on, to name
just three that come immediately to mind. I raged against anyone and
anything that seemed to be against me, who treated me condescendingly. I
raged and railed against them as examples of the bad things in God's
creation. Pretty immature and trivial compared to some of the world's great
human tragedies. As humanity is made in the imagination of God, I got angry
at God's limited imagination.

 Here is a poem I wrote during these months that conveyed something of what
I was feeling.








   LAZARUS
I

The day began normally for me
Up at five. Run.
At seven leave.
Drive there on the 401.
Arrive shaking from the tension
of driving. Or so I thought.
Until the doctor said:
"Parkinson's." Esther cried.
The doctor said:
"You will be able to tie flies again."
The fool had no sense of what's important

Nor had I.
I tried to hide the shaking hand,
the dragging foot.
To no avail. One day I said:
"No, not hangover. Parkinson's."

No pain
No movement
No work.
Pension at forty five.

A baker's dozen years now
I raged like Sampson.
I did not curse God
I tried to understand
Why me?
There is no reason.
There never is.
So, why not me?

It is perverse.
Some days I move at will
Others cannot despite my will.

It moves in leaps as if to curb
My pleasure.
I am trapped inside my body
But not in prison.
For I have much to do before I go;
I must complete the task
Fulfil the vision

II

There are others who do not know
Why they are different,
Or what makes them so.
They live in squalor and
Fear
Of what they do not know.

Because we are indifferent
Because we care more for the far away
Than the near
Bosnia, not Regent's Park
New neighbourhoods to us
Xenophobia is powerful
We are afraid of what we do not know.

The Good Samaritan shared not our cares
He helped without reward.
We have neither
Soul nor imagination.
We care what others think
Emotion does not show.
It is unmanly
To stop before satiety
Or so we think.

He said: "The poor are always with us."
Do not make Him a liar,
For He is Perfect
And cannot lie.

We are our brother's keeper.
Providence keeps us.
We defy it hedonically
Always testing limits
We are the hollow men
and do not know it.
We whimper at affronts to comfort
And repeat old words
That cleanse guilt
Like silver polish
No effort.


III

We go about from day to day
Seeing nothing but footsteps,
Smelling only the ordinary and execrable
Feeling nothing but kitchen textures and
Bedroom emotions.

What closes our eyes to wonder/
Our touch to the exquisite?
The mind to the unknown?

Why are we afraid to explore the beyond?
Examine the rose without thought of time
Or consequence
Shut off all around.
Let concentration become meditation
Surrounded by what was always there
Now understood.

Creation transforms us
I we let it, into
New people freed of the opaquing caul
that clouds the senses
numbs the mind

IV

We do not think
of disability
When we are young.
We will be forever young.
Perfection
we look for and find not

Now half the time
I cannot walk
Cannot write
Speech is slurred.
I can see and
Hear
And touch.

Pain is transient.
It is easy to sit and
Not initiate ... anything.
People understand that it is hard.
The anguish of a song unsung,
A book unwritten is as impotence
To creation.  We are free to choose.

We become the passive people
Beneficiaries of goodwill expressed
Without asking us
What, when, where ...
We would like ...
No matter ... they know best
We only have PD,
The object of their charity

I am Larazus
There are gradations of Hell
I know them all.
I am not a survivor
I am the strongest and best.
I must be
To endure Hell.
I am Lazarus
I am not chosen
I have made the choice
to be free.


 Parkinson's had progressed in me in the past year to the stage where I was
now immobile, trapped, for half the waking day. During the other half, I
needed help walking, usually using two sticks. There were short periods when
I could walk unaided, but these were unreliable. Without medication I could
not move at all and had to be in a wheel chair. Dyskinesia, a side-effect of
L-dopa medications, had become a real problem. The radius of my upper body
movement was two and a half feet, 80 centimetres for metric types. If I were
in a China shop, I would be a bull.

 My appearance and slurred speech, which did not reflect anything I felt
physically or emotionally, were extremely offputting to others, particularly
people who did not know me, and alienating for me. The neurologist and
writer, Oliver Sacks, gives a vivid description of one of his patients which
applied well to me.
  ... he would sometimes speak of his body as a prison, with windows but no
doors. He also saw himself as being exiled from proper life and from other
people ...

 The principal anti-Parkinsonian medications - Sinemet CR and Prolopa
effectively moderate Parkinsonian symptoms of immobility but they also cause
dyskinesia as a side-effect. As dosage rises and the length of time the
patient uses the medication increases, the side effects become worse. The
physician, working with the patient looks for an acceptable compromise. By
this time, I was taking fourteen Sinemet CR tablets daily, well over the
usual maximum recommended dosage. But I was faced with a Hobson's choice: to
increase the dosage to the extent necessary to make me fully mobile, in
which case the accompanying dyskinesia would be incapacitating; or to reduce
the dosage to the extent required to eliminate dyskinesia in which case I
would be immobilized.

 Despite the horror I felt at the video film of my reading at our dinner
party, I actually had a reason to hope that my condition might be improved.
Earlier that year, in April, Dr. Lang had suggested that I consider
experimental neurosurgery as a partial alternative to drug therapy. He
recognized that mobility was a real priority for me because of the
implications of Esther's condition. He explained that the surgery was not a
cure for Parkinson's, but would be an interim solution to my declining drug
response rate. The medications were simply becoming less effective,
increasingly going "off" at random during the day for periods of time
varying from half an hour to three or four hours, and.

  The proposed operation, a pallidotomy, involves making a lesion, or scar
tissue, on the globus pallidus, the part of the brain that regulates
movement. To make the lesions, the surgeon would have to make precise,
minute probes through my skull into the brain. The probe would then be
heated and burn a tiny part of the brain tissue that was producing the
difficulties in movement in my body. This surgery, if successful, could ease
the symptoms, meaning a lower dosage of the drugs could provide me with the
same or better relief. I had resisted the idea at first, but as the summer
wore one I became increasingly attracted to it.