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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 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.