Toronto
The New Brian
It was then that the weight of depression lifted from my shoulders. I found my self-confidence and strength-of-will once more knowing I have the capacity within me to take on whatever may come my way. Hugh told me after I had come out of my depression that he never thought I was depressed.
“What was I then?” I asked Hugh. I’d been struggling against something for the past ten years – this monkey on my back or whatever it was.
He looked at me and said, “I saw someone dejected and demoralized.”
I had searched for a decade trying to find what I could never have found. I was increasingly frustrated by my fruitless trek and my body’s failings that thwarted my efforts to make a life for myself. I became more dispirited and disheartened as time went by. All this I saw as depression and the resulting insecurity as anxiety.
But never again!
I am now Brian in my own right. I live life as my own person. I am able to meet whatever life has in store.
As the veil of my depression started to lift I found the inspiration to follow my dream to do Voice Over (VO). I had wanted to give voice to animated characters since I was a teenager for two reasons. First, it would be a really cool thing to do. Second, because of my facial paralysis I couldn’t make facial expressions such as frown, raise my eyebrows or give a big, wide smile – but the characters I gave voice to could.
Just as for teaching, giving a workshop and working in a medical lab, there were people who told me, “Brian, you can’t do Voice Over.” Some people told me this out of genuine concern that I was destined for certain failure and didn’t want to see me get hurt. I appreciated their concern but as I listened in my mind I said, “Oh please save it.” Then there were people who told me I couldn’t do VO just for their own satisfaction of telling me so. For these people my sentiment was, “Take a hike!” My reply to everyone was, “I’m working on it.”
In April of 2010 I joined Voices.com, a Voice Over marketplace, and started receiving their emails, newsletters and job notices. That September I went to the Voices of Vision event in Toronto where I got a good feeling for the VO industry that I couldn’t find in Thunder Bay. At Voices of Vision I met Pat who gave the first workshop. He emailed me two weeks later inviting me down to a Voice Over event in October at his studio in West Hollywood. “Awesome, I can’t pass this up.” I did something that was totally out of character for me. I jumped on a plane for LA with no idea how I was going to pay for it. I was nervous. At Pat’s VO event I got two turns to stand in a recording booth in front of a microphone and read a script. I know I can trust Pat’s word when he said I was fine. When I came back to Thunder Bay from Pat’s VO event I felt I needed to strengthen my vocal skills. I saw Mona, a speech pathologist, monthly for a year and a half. She had done some VO herself so she knew what I wanted to do with my voice. Mona was very creative and helpful. We improved my voice as best we could given my impediments. I gained more confidence in speaking. Then I took voice lessons over Skype for a year from a woman named Sunday, a voice coach in Toronto. With her guidance I focused on how I can best employ my vocal skills.
When I decided to do VO I joined Toastmasters. I wanted to improve my public speaking and interpretive reading skills. I belong to two Toastmasters clubs in Thunder Bay, compete in speech competitions and have earned my Advanced Communicator – Bronze and Competent Leader standings. Toastmasters taught me a lot about the craft of speaking. My confidence in public speaking and reading aloud has grown tremendously. Best of all I enjoy it.
Like Mom and Dad I was an active member of Corpus Christi. When I moved into my condo I involved myself in all the church functions at St. Agnes to forge an identity of my own. After four years I became discontented with the church services and the whole church scene. I couldn’t put my finger on why but it all started to feel hollow. I could experience the building and the people but no spiritual connection. I realized I was trying to live my mother’s relationship with Catholicism. I had to find my own spirituality. I stopped going to church and I didn’t miss it.
I lived in spiritual limbo. No longer did I have a spiritual basis in church and I didn’t know where else to look. Counselling for my depression revealed the wholeness within me. My ascent from the depths of depression began when I discovered that the light of my spirit and strength shines outward from my heart and soul.
Since then my spirituality grew beyond any one set of beliefs. No longer could I adhere to the teachings and edicts of some external church telling me what my beliefs were. I found spirituality to be much more. Now my spirituality comes from a variety of sources and always shines out from within me. I will never knock organized religion. It is a source of spirit and strength for many people as it once was for me.
I met my health challenges of facial paralysis, speech impediment, poor balance, hearing loss, obesity and depression. I surrounded myself with people who could help me with my disabilities and forge ahead with life. When I saw how technology could help me I embraced it. I now know the joy of expanding my creative mind: Interior Design, Architectural Technology, Copywriting, Artist, Writer, Voice Actor, Toastmaster and … There are many more things I want to learn and do. These are my dreams. Anyone who looks with an open mind at all the things out there to do will find the opportunities are endless. I’ve gained confidence travelling by myself to reintroduce “Brian” to my family and preserve the family history. Moving in with Catharine and her children enhanced my family life tremendously. I have found fulfillment in writing and speaking. My new spirituality has given me a sense of inner peace and joy. Despite all I that have been through I am living my dreams.
Dad aptly chose The Old Man and the Sea to read to me in the ICU after my neurosurgery at Sick Kids in 1972. He chose the story of a man who kept his courage in the face of defeat who won a personal triumph from loss that, for me, proved to be prophetic. It would be the story of my life.
In my world there are no final frontiers. There are only new frontiers to be discovered and explored. My life is my continuing mission. What else is in store for me? What new adventure awaits? Whatever it is I will face it with a smile!
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Overcoming another road block
Even though I had dealt with the changes in my body and the deaths of my parents I was unable to handle life very well. The emptiness was still there. When I started to manage the geochemical lab the stress made it harder to keep my head clear. I felt like all the nerve endings under my skin were jumping to the surface. I saw my doctor who put me on 40 mg of Paxil antidepressant medication. It took the edge off my anxiety.
I took Paxil for four years until my final year in the Architectural Technology program. During that year a feeling within me grew that said the Paxil was no longer doing anything for me. I weaned myself off Paxil over two months and found my nerves were no different. I was right. Paxil was no longer helping me cope. “Why am I taking this stuff?” I asked myself. I was handling life well enough even though Paxil wasn’t helping me so I stayed off it.
Also during my final year at college I found I couldn’t afford my condo anymore. Catharine had been separated for two years. So she and I started a partnership. We searched for a house that she, Sarah, Matthew, Tessa and I could live in. We found one and we had a home. I invested money from the sale of my condo in the house to lower the mortgage payments. It went unsaid but Catharine and I both wondered how this was going to work out since we hadn‘t lived in the same house in 26 years. With some give and take and understanding Catharine and I got to know each other better than when we were kids.
I continued with my studies and graduated with an Architectural Technology diploma in June, 2005. The program had taught me a lot of new things such as building construction techniques and codes. As it turned out I would never work as an Architectural Technologist because of another blow as a result of the radiation therapy I had as a child.
Two weeks after I graduated from the Architectural Technology program and three weeks after getting back from setting the date for plastic surgery I suffered another big drop in my hearing. This time it was my left ear and again it was overnight. I woke up one morning in June, 2005, with profound deafness in both ears. I was left floundering.
Suddenly the phone was virtually useless and face to face conversations were difficult at best. It was yet another frustration and I was exasperated. Here I was trying to make a life for myself, and had a sense of getting somewhere, only to be kicked back. Again I had to regroup. Now depression more than anxiety ruled my life. In hindsight this was a blessing in disguise. I was forced into making another life change that would be very positive for me.
“Now what do I do?”
Any job that required me to answer the phone or talk to people was just about out of reach. I couldn’t call to inquire about a job. Even if I got a job interview I wouldn’t be able to get through it without frequently having to ask the interviewer to repeat him or herself.
I went to see Patrick, my audiologist, who fitted me with hearing aids that made me fairly functional with face to face conversation and I could use the telephone with difficulty as long as it had a volume adjustment. For three years I used these hearing aids and I avoided using the telephone as much as possible. My confidence with the phone was completely shattered.
My saving grace when I lost the hearing in my left ear was that I was living with Catharine and her kids. After a few disastrous attempts at trying to answer the phone Catharine said, “Brian, don’t answer the phone. If it’s for you we’ll tell you.” Catharine helped me with the important calls so that I could catch everything said. I was fortunate to have friends who were understanding and patient with my difficulty when they called.
A month after my hearing loss I expressed my frustrations about my dilemma to Catharine. She suggested trying to do things online. I had thought of it but not seriously. My email account was all but dormant. I hadn’t surfed the net much for anything. Catharine’s suggestion made sense though. I started to look for things to do on the net. I hear email just fine.
A whole new world of things to see and do opened up to me. Google and Wikipedia became routine for anything I wanted to look up or know about. There were websites to look at, newsletters I signed up for and I patted myself on the back the first time I watched a YouTube video. Now I don’t know how I managed without it. Of all the things I found on the net I was most intrigued by copywriting – the craft of writing ads, brochures, articles and, best of all, getting paid to do it. I decided to focus on what I considered to be my last remaining asset – writing. I was more comfortable writing than with anything else. It had always come easily to me.
Once I decided on copywriting I read all the books and articles I could find. But reading about copywriting wasn’t enough. I needed a qualification. I found “The Institute for Copywriting” in England. This was my first online course. When all the assignments were completed The Institute mailed me my diploma.
I had my diploma but I came up short of starting a career in copywriting. I was used to taking courses. When it came time to put into practice what I had learned I faltered. It was as if someone was reaching through me from behind, grabbing hold of my sternum and pulling me back. My nerves and self-doubt would take control of me. But the willingness inside urged me on.
I continued to look into copywriting. I spoke with a copywriter from Utah who was very patient with my difficulty in using the telephone. He had learned copywriting through American Writers and Artists Inc. (AWAI). I decided to take that course. In November, 2008, I went to AWAI Bootcamp, a copywriting conference in Florida. The main reason I went to Bootcamp was to meet people working in my chosen profession. I attended some very insightful workshops and met 300 copywriters. Up until then I hadn’t met even one. I came back from Florida with my batteries charged but something held me back.
The one drawback to copywriting, even though most of it is done online, was that I couldn’t avoid having to pick up the phone to call someone. I was frustrated but it wasn’t going to stop me. I went to the Canadian Hearing Society (CHS) in Thunder Bay where I hoped they could show me a way of handling phone calls. I was out of ideas. I met a counsellor there named Jeff. He showed me the various devices I could use that I tried with limited success. When I found Bluetooth hearing aids in their catalogue I knew right away that these were the answer. They worked like a wireless head set. By pairing a cell phone with Bluetooth hearing aids I heard the caller in my hearing aids just like a face to face conversation. I responded by speaking into the microphone in the remote hanging around my neck. They weren’t the perfect solution but they were light years ahead of anything else. With the Bluetooth hearing aids I regained my confidence in using the telephone.
Jeff was hearing impaired and the first person I met who was more comfortable with American Sign Language (ASL) than with verbal speech. Our counselling sessions were staged with Jeff and me in a room at the CHS in Thunder Bay with Jeff on camera. Glenda, a hearing ASL interpreter, who was on camera in Guelph saw what Jeff signed and said it out loud so I could hear it through a speaker phone. Karen, a captionist in Toronto, heard what Glenda said and typed it out so it appeared on a laptop screen in front of me so I could read it. This worked well since I only caught half of Glenda’s words. Glenda listened to my response and signed it to Jeff.
Jeff and I covered a lot of ground this way. I could talk to him easily about my frustrations with life and how I could best handle my deafness. Jeff taught me about the Deaf community and culture. I became involved with many of the CHS functions. I’m now on the Community Development Council for the CHS in Thunder Bay. The Canadian Hearing Society has been a very positive experience for me.
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Time For A New Direction
After many failed interviews I found work for a short time in a geochemical lab. Then I applied to work in a medical lab only to be told that I would have to re-train since I had been out of the field too long. This rejection was my motivation to try new things. I had a decision to make. Do I spend three years of full time school retraining to get my old medical lab job back or do I try my hand at something new – something of my choosing? I opted for the new. The time for change had come. I would close the door on the scientific world and open another to take my life in a different direction. When I came to this decision I was filled with a sense of freedom. I felt some guilt too since I was departing from the life my parents had worked so hard to forge for me. Even though I was more or less forced into it all the feelings I had about this change were very positive. I knew intuitively that making my way through life on my terms was what I had to do.
My parents had been dead for over a year and I had made many decisions of my own accord like renovating the house and settling Mom and Dad’s estates. When it came to changing the direction of my life, despite the positive feelings, I wanted their consent – as if I needed to hear them say, “Brian, it’s all right.”
I went to St. Andrew’s cemetery and told Mom and Dad my plan as I stood in front of their headstone. What I got for a reply was a resounding silence. It was a shock but what was I expecting? I realized then that this grave was only a marker of my past life and not an anchor to it. Until that moment I couldn’t fully separate my parents from my new life. I had decided that since my parents were buried in Thunder Bay here is where I must stay. But the silence of their grave shouted back at me to make that final separation. Never again would I consider what my parents might have wanted. If ever I needed to leave Thunder Bay I would.
The question now was – what should I do? Drawing and designing were things I had always loved to do. So in September of 2002 I enrolled in the three year Architectural Technology program at Confederation College in Thunder Bay. When I started the program I weighed 186 lbs. With the stress of full time study adding to my bad nerves I resorted to comfort foods. At the end of my second year in the Architectural Technology program in April of 2004 I was 207 lbs.
That July my doctor discovered I had high blood pressure. I was shocked. My blood pressure had always been normal.
The doctor said, “Brian, the number one cause of high blood pressure is being overweight and not exercising.”
I sat for hours in front of a computer at the college, drove home to sit in front of the TV and I was very overweight. There was no denying it. I was fat.
The year before I started college I told Catharine about my frustrations in my inability to find work. “Thin people are taken more seriously than fat people,” I said, “I can’t do anything about my facial paralysis or my balance but I can thin myself out.” Even then I wasn’t seriously trying to lose weight. I sought to solve my weight problem with plastic surgery. I’d simply have the fat removed – a quick fix – and I started to look for a plastic surgeon.
After I was told that I had high blood pressure something clicked inside me. I became so frustrated with myself in knowing that I was the author of this. I had let myself get to this point. For years I said I should lose weight. I went on a diet and dropped a few pounds only to put them back on plus a few more. When I spoke to the plastic surgeon at St. Michael’s Hospital in Toronto who eventually operated on me, she said she could do the surgery but first I had to lose 50 lbs. There was no easy way out and that’s what I needed to hear. Now I was adamant. “I will lose weight,” I said and I set out a plan to do it. I made an oath with myself. “I’ll be 180 lbs by Christmas and after that I’m losing five pounds a month.” It was a challenging but realistic goal – a goal where I had to change my diet and lifestyle enough so the weight would stay off.
From then on I watched every calorie and reduced the amount I ate to the point of feeling a bit hungry most of the time. I needed to get my stomach to want less food. Comfort foods were out and fruits and veggies were in. The only exercise I could do with any proficiency was walking. So everywhere I went involved going for a walk. I went for a long brisk walk (and sometimes two) every day. By New Year’s, 2005, I was 180 lbs (close enough?), 175 by the end of January, 170 by February 28th, and by April’s end I had lost 50 lbs. I saw the surgeon in June of 2005 and we scheduled my surgery for October 30th. A pang of emotion swept over me as we set the date. “It’s really going to happen,” I said to her. The goal I diligently worked so hard at for over a year was going to become reality.
“Yes it really is,” she said.
I chose this surgeon because I sensed she understood why I was doing this. She saw it was part of what had become a personal mission to better myself and to get ahead in life.
For the months up until surgery I stayed on my weight loss regimen. As I got down to 160 lbs I asked myself, “How much weight is enough to lose?” My body told me. When I reached 140 lbs I started to feel thin. I knew I was close to the weight I should be. By the time I had surgery I was 131 lbs. I lost 76 lbs. This surgery was the first of two. It was a tummy tuck and buttock lift to remove the excess skin left over from losing weight and the skin folds I’d had for years from being on decadron.
When I woke up I had a gruesome-looking surgical wound that went right round my middle just above my hips. I looked as if I’d been chopped in half and sewn back together. Fortunately it didn’t hurt that much. I dropped ten pant sizes from 40 to 30 and medium sized shirts to small. Best of all my blood pressure returned to normal. The second part would be done the following October to remove the redundant skin folds on the insides of my upper arms and inner thighs.
The night before I went into St. Michael’s for my second plastic surgery I sat in a chair of my hotel room and thought. “How many surgeries have I had by now?” Counting them up I’d had 20. Tomorrow’s surgery would be number 21. Four years passed from when I started looking for a plastic surgeon to my second surgery.
But it wasn’t enough to find a surgeon. I had to pay for the plastic surgery. I used most of my savings to do this. It was money well spent. I have no second thoughts about that. My body is no longer the source of embarrassment that it had become for years. I have more energy and people take me more seriously. I’m proud of my achievement. All the positive feedback from people was terrific.
“Are you Brian Spare who …?”
“Yes.”
“Wow, you lost so much weight I hardly knew you!”
It’s great to hear and it boosted my sense of accomplishment tremendously. I got comments like this for over a year.
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Through Loss Is My Beginning.
Mom often told me the story of how she met Dad.
“I met your father in the men’s washroom at Hillingdon,” Mom smiled and laughed as she relived the moment.
In the summer of 1953, Mom was assisting a male patient to the washroom one afternoon. She met a handsome young man, Peter Spare, the Assistant Clinical Chemist. As a nurse she was one of the few women permitted into the men’s washroom.
“He was surprised to see me,” Mom said.
A few days later when they crossed paths they smiled as they talked about their bathroom encounter. That started a two year courtship.
Once Mom and Dad got to know each other they found, despite their very different upbringings, they had many things in common. Both had grown up on a farm and hated the farming life. Each had chosen a profession in health care and had achieved their education through their own means, hard work and determination – and they both desired to leave the UK. When it came to getting an education and forging ahead in life Mom like Dad found her helping hand at the end of her own arm.
Dad owned a three-wheeled, two-seater, Bond Minicar convertible powered by a motorcycle engine. It was constantly breaking down so he kept a tool box in the back to change a spark plug or whatever needed fixing. Often it needed a push to start it. But Mom didn’t know how to drive. Dad would have to steer while Mom pushed. When the car started Mom jumped in and off they went. They made a good team.
“I swear I pushed that car everywhere we went,” Mom said.
September 3, 1955, Mom and Dad were married at St. Patrick‘s church in Northampton, England, and they spent their honeymoon at Shakespeare’s birthplace in Stratford on Avon. When they returned from their honeymoon Mom and Dad made their final preparations to set sail for their new life together in a new land. In early October they sailed to Canada. They docked in Montreal and rode the train to Sudbury, Ontario, with just $18.00 cash between them.
Soon after they arrived in Canada Mom and Dad tried to start a family. I was born four years later and they adopted Catharine three years after that. Mom and Dad were dedicated parents who raised Catharine and me in a loving and stable environment. They were always supportive to each other and were unwavering in their parental duties.
All through my grade school years we had family, neighbours and friends in and out of our home and guests over for dinner. For every occasion throughout the year we had people and parties at our home. My illness changed all that. From my neurosurgery at Sick Kids in Toronto until my recovery the house parties stopped. During those two years only a few friends came by. An elephant lived in our house and many people didn’t know what to say or do. Adults with healthy children were silently thankful they weren’t in Mom and Dad’s shoes.
The traumatic experience of my brain tumour had affected all of us. I was left with disabilities and the plight of adjusting to them. Mom and Dad had to recover from coping with the distress of watching me get sicker during 1973. They seriously wondered if I would live though it. Catharine quietly watched as the world focused on me. Being younger she weathered the storm better than any of us. When the two years of my recovery had passed, and I was getting out again, the house parties gradually started. Once more other people’s voices enriched our lives.
Mom and Dad continuously applauded my efforts to overcome my disabilities. They did anything and everything to forge a successful path in life for me. Mom never accepted what had happened to me. She had a mother’s guilt of thinking she could have done more for me. She saw the perfect little healthy boy that she had prayed so hard for become sick. Mom was thankful for me but felt cheated that she couldn’t bear more children. Also Mom didn’t become the woman of wealth and prominence she had dreamt about. Mom lived her days looking back to her troubled childhood and it influenced every decision she made. She worked hard to get out of her impoverished life and she sensed she was succeeding in her aims only to be thwarted by circumstances. She wondered when the cruelties of this world would let up on her. Mom felt as if life had been very unfair to her.
“Why do some people go through life with hardly any problems,” Mom said to me, “and others get so many?”
The culmination of all her worries sowed the seed of her depression that didn’t surface until the 1980s. The love that brought Mom and Dad together and bonded them through their life’s journey was always there. As Mom’s depression took root a wedge was driven between them.
Part of Mom’s depression stemmed from the fact that she had no siblings in Canada to support her. “If only Rita had lived she would have come with me,” Mom said to me with a mournful sigh. I recall how her spirits were lifted when she received a letter from one of her sisters. Mom yearned to return to Ireland but Dad had no desire to do so. Although she dearly loved her husband Mom very much resented his choice to stay in Canada. Mom and Dad remained together out of their commitment to each other and to Catharine and me.
Even after Mom’s depression started to take hold of her the get-togethers with friends continued. Not until 1985 did the house parities start to taper off. During the three years I was in London, Ontario, things really diminished. When I came back to Thunder Bay the house was much quieter and even general house maintenance had been left. It demonstrated to me how central I was to Mom and Dad’s lives. Without my presence they lost the focus of what had driven them forward together for many years. Mom and Dad lost each other in their efforts to build a life for me.
When we started Tara Scientific Laboratories my parents found a renewed energy in helping me build a future. Running Tara demanded a lot of our time and by and large took the place of our social lives. Not until the final three months when Mom and I were shutting Tara down did I truly notice just how quiet the house had become. Many of the family friends who were in and out of the house over the years had moved out of town, passed away, or just stopped coming – friends who were never replaced. Our home had become a lonely place.
Once Tara was finished and Dad’s affairs had been put in order, Mom began to lose her positive outlook. She sensed the emptiness of our house too and didn’t see how or have the energy to liven it up once again. Mom lost her focus of helping me build a life now that Tara was gone. She had seen me to my 40th year but she could find no more of herself to give. Mom died of a heart attack in her sleep June 10, 1999. I think her spirit drained away over the last three months of her life.
I laid Dad to rest and then Mom. On June 15, 1999, the day after I buried Mom, I filed Tara’s final taxes. Maybe it was meant to be that way. Mom and Dad steered the course of my life for its first 40 years. Tara Scientific Laboratories was the last part of it on which my parents had influence. When I laid Tara to rest I put aside my parents’ capacity to shape my life. Now navigating my way was solely up to me.
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My Smile!
During the time of Dad’s struggle with cancer Mom found an article in the newspaper about a new surgery for people with facial paralysis called Smile-Surgery. It was pioneered by two plastic surgeons in Toronto. I saw the surgeons in March, 1977, to find that I was a good candidate for this procedure. After the surgery I would be able to move the corners of my mouth outward and up to smile.
Smile-Surgery: One end of the gracilis muscle is attached to the chin and the other end to the cheek. The blood supply and nerve are connected to the jaw muscle. After 12 weeks the surgery heals enough for the “smile muscle” to start working. It contracts when the jaw muscle is tensed causing the corner of the mouth to move outward and up to smile.
“Is this the answer?” I wondered, “Would I finally have what I had dreamt of for so long? Would I get my smile back?” I was afraid to hope. I didn’t want to be disappointed again and yet my intuition told me to have the surgery. I thought about it for months.
In October of 1997, I had Smile-Surgery on the right side of my face at the Toronto Western Hospital while Dad and Jeanne ran Tara.
The Smile-Surgery involved taking some gracilis muscle from my inner thigh and transplanting it into my face (right thigh for the right side of the face and left thigh for the left side).
The lack of a smile wasn’t my only problem. Since I didn’t have cheek muscles to support my lower eyelids they sagged. During this Smile-Surgery the surgeons made a sling for each lower eye lid from a tendon out of my left wrist to hold them up.
When I woke up after surgery the incision on my face went from my right temple, down past my ear, around the corner of my jaw and along it to my chin. I had an incision along the inside of my right thigh from my knee to my groin with drains sticking out. I had swollen, bloodshot eyes I couldn’t focus. They had taken a tendon out of my left wrist and there was an IV in my right hand. I was sore all over and all I could do was lie on my back and stare at the ceiling. Man was I ever feeling sorry for myself.
“Brian,” I said, “what on Earth were you thinking? You didn’t have to do this.” Wah wah wah.
Two days later I wasn’t as sore. I could focus my eyes again and I was glad it was over. Four days after surgery the drains came out and I could get up. Three more days in Toronto and I was back in Thunder Bay.
It took two weeks for the swelling in my face to go down. The surgeons gave me step-by-step instructions on how to strengthen my new muscle. I stood in front my bedroom mirror daily to practice twitching it by tensing my jaw muscles. There was no movement at all at first. The right side of my face looked to be more alive but, try as I might, the corner of my mouth wouldn’t budge. I was disheartened but I reminded myself that the surgeons had told me that the muscle needed time to heal before it would work. Of course I wanted the smile muscle to work right away. I kept practicing. Twelve weeks after surgery I was sure I could feel a tug in the corner of my mouth. It was also time for Smile-Surgery on the left side. In early January, 1998, I was back at Toronto Western Hospital.
Now I practiced twitching both corners of my mouth. To the surgeons practicing twitching the smile muscles every day was very serious business. I was like a kid with a new toy. Each day I stood in front of my bedroom mirror to practice twitching my smile muscles. At first I watched the corners of my mouth move slightly. The twitches got broader as the smile muscles became stronger. The joy in my heart grew and grew as I witnessed my motionless, expressionless face come to life. For the first time in 25 years I had movement in my face. I had my smile! It wasn’t the big, wide smile I would have liked but it was bigger than Mona Lisa’s.
“Why not have some fun with this too?” I thought. I discovered that, along with regaining my smile, I could make sounds again that I hadn’t made since I was a kid such as blow raspberries. Awesome!
The surgeons brought each smile muscle around under my lower lip as well. To have working muscles support my lower lip again proved to be a permanent solution to the problem of it curling down.
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LU Here I Come
Although the surgery in Cleveland wasn’t successful I succeeded in becoming a student at Lakehead University in Thunder Bay in September of 1977. Some of my friends started university that year. I wanted to try university. Since I had been out of school for more than three years for reasons beyond my control Lakehead University allowed me to take at least one course. If I did reasonably well I could register in a program at LU the following September as a mature student. My goal was to get into the Bachelor of Science (BSc) in Biology program. I enrolled in first year calculus, a requisite course, and Astronomy, a science elective. I could drive myself to classes but I worried the walk from the parking lot to lectures would be too far for me. It was a bit of a hike at first but with practice it became routine.
The high school correspondence courses had provided me with all the education I needed for university except Chemistry. I took a non-credit course at LU as well which taught high school plus some first year university chemistry. There I met Terry. He was from Toronto and had a BA in Psychology from the University of Toronto. He came to Thunder Bay to take a Masters degree in Psychology and also to study science. We quickly became good friends. Terry had a wild streak in him. He was eight years older than me and had seen much more of the world. Terry possessed a natural propensity for making friends many of whom I got to know.
I was still finding my way out of the house when Terry took me under his wing. He made sure I got out to experience the world. Terry took me to a bar one night and got me drunk. I could barely stand up. Another time he set me up with a date, Anna, a nursing student. Our date didn’t lead to second but she and I liked it when crossed paths at LU. Terry knew how to throw some great parties all of which I remember well. He was also licensed to fly small planes. Now and againTerry rented a Cessna C127 from the Thunder Bay Flying Club and take me up flying. When the plane was in level flight he let me steer. I felt so free and in control of myself as I flew the plane over Thunder Bay and the countryside. The coolest was to see my house from 10,000 feet up. When we landed I was eager for our next flight.
I squeaked through Calculus with 51% and got a respectable 68% in Astronomy. My marks were good enough to make me a university student in September of 1978. I have to say that Dad’s encouragement and his affiliation with Lakehead University as Professor of Medical Laboratory Sciences had a lot to do with my chance to try out for LU.
I enrolled in the Biology program at Lakehead University as a part time student and took three credits. Full time students take five. Mom and Dad thought that three courses would be all I could handle. They were right. My writing was still slower than average. The amount of reading required for just those three courses overtaxed my eyes. Sometimes I came back from LU after classes and asked Mom if she would read a section of the textbook to me. We sat at the dining room table across from each other just as we did for high school and she read the textbook as I covered my eyes with my hands to rest them. I passed my courses and together with the two I’d taken the previous year I had the five credits I needed to complete the first year of the Biology program requirements.
I took a course in the spring and another in the summer. These were intensive full courses that went five hours a day Monday to Friday. It was a gruelling overload of information each day. But the classes were small, we helped each other and I earned a credit in just six weeks.
Armed with my two second year credits I registered for another three courses in the fall. In April of 1980, I completed the second year of the program. Once more I took a course in each of the spring and summer terms.
During that summer I had to say good-bye to Terry. For the three years he was in Thunder Bay Terry was a regular around my home. His colourful personality filled the house as soon as he walked in the door. Terry was my good and constant companion during his time in Thunder Bay. With his MA degree in hand Terry bought an old car. He packed all his belongings in it, which were not much more than his clothes and guitar, and headed off on his next adventure. I missed him when he left. Terry moved west to Edmonton, got married and settled down.
In September I started the last three courses for the BSc degree. At the convocation ceremony on May 31, 1981, I received a BSc degree in Biology from Lakehead University. I had accomplished what some people thought I would never live to do.
I wanted to continue on to become a graduate student and earn a Master of Science (MSc) degree in Biology. I had to have an Honours BSc (HBSc) to do that. I needed a course average of at least 70% to get into the honours or forth year, but I pulled up short with 68%. I was determined. I studied for another year at LU as a full time student to get a four year BSc pass degree in Biology in May, 1982.
Four years of university had taught me about plants, animals, anatomy and physiology, but I still didn’t have a skill to find work. In September of 1982, I enrolled in the two year Medical Laboratory Technologist diploma program at the Thunder Bay Institute of Medical Technology. It was a requirement for the HBSc in Medical Laboratory Sciences program at Lakehead University. In May, 1984, I received my diploma and enrolled in the HBSc program at LU. I had all the courses for the degree from my BSc in Biology except the core courses. In a year and a half I had an HBSc in Medical Laboratory Sciences. I set my sights on the MSc in Biology degree.
I enrolled in the Master of Science in Biology program at LU in September, 1984, and worked as a teaching assistant. The pay wasn’t great but it paid my tuition and gave me some pocket money. On graduation day in May of 1986, I received my MSc degree in Biology. I walked in procession into the convocation hall. When I stopped I had a front row seat in front of the podium. Dr. David Suzuki addressed the graduates. He talked about how hard we worked to earn our degrees and that we should take pride what we had achieved. Next Farley Mowat spoke. As I listened I was transported back to the desperate times of 1973 and the evenings I lay tucked into bed listening to Dad reading his stories. I clearly realized then just how far I had come. I held my MSc degree knowing how hard I had worked for it, how determined I had stayed and how much adversity I had overcome to attain my goal. I was definitely proud of my achievement.
While I was a Teaching Assistant I thought I would like to teach in a university. To do that I needed a Doctor of Philosophy (PhD) degree, but LU didn’t have a PhD program. In the fall after I graduated with my MSc degree Dad was invited to speak at a conference. He met a former colleague from London, Ontario, who knew of an opportunity. He suggested that I could work at St. Joseph’s Hospital lab in London where he worked. I could try some courses at the University of Western Ontario in London and possibly get into a PhD program.
During the year after I graduated with my MSc I applied for work in the medical labs in all the hospitals in Thunder Bay but to no avail. The opportunity Dad’s colleague in London proposed seemed better and better as the months passed. London offered me both a job in a medical lab and a chance to earn a PhD.
I planned on moving to London in late August of 1987 but I was faced with a challenge once again. I woke up one morning just before the move to discover that I was completely deaf in my right ear. When I had my hearing tested I was told that my deafness was caused by damage to the auditory nerve. They couldn’t offer a solution to the problem. I didn’t know until then that my tumour and the radiation therapy damaged the myelin sheath around the nerve. The damage impaired its function and started a progressive hearing loss. I carried on hearing only through my left ear.
Despite the loss of hearing in my right ear I packed my belongings and moved to London. I enrolled in a physiology course at Western and started part time work at St. Joseph’s Hospital. I worked there for two and a half years as a technologist in the hospital medical laboratory with a great group of people. After three years of trying I was no closer to getting into a doctoral program at Western than when I had first travelled to London. The professors I approached about doing a PhD with them kept citing their lack of research funds.
In June, 1990, I moved back to Thunder Bay with my tail between my legs. The London experience was the first time a lot of work and perseverance didn’t get me to where I wanted to go. I was burned out. I couldn’t push anymore. There was some good that came out of my tenure in London. It was a time of much personal growth. I lived by myself independent of my parents. And I clearly demonstrated that I could organize my life and take care of myself. After all I was 30 years old.
When I got back from London Dad had a plan. He proposed that we should start an environmental laboratory business. I had the chemistry skills and Dad was confident I could do it. We took a chance and created Tara Scientific Laboratories.
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Someday I’ll Get My Smile Back
In the mid 1970s biofeedback captured the public’s interest and became my hope to overcome my facial paralysis. I dreamt of making facial expressions again and most of all to be able to smile. A doctor in Los Angeles was well known for his expertise with this technique. In late May of 1975, Mom, Dad, Catharine and I were en route to California. We stayed at a hacienda-style hotel called Griswold’s in Claremont, a suburb of LA, where the doctor had his practice. It was a two storey building and the elevator was outside. The vending machine beside the elevator sold Canada Dry soft drinks. I had never seen a vending machine selling Canada Dry soft drinks in Canada.
Biofeedback: A training technique whereby an electromyograph is used to measure electrical impulses produced by muscle movement. The impulses are displayed on a screen to the person being monitored in order to assist that individual to improve muscle function.
At his office the California doctor stuck three electrode needles in each side of my face. Each needle hurt like sticking an IV needle in my hand. My face felt like a pin cushion. The electrodes were wired to an electromyograph to measure the electrical impulses produced by muscle movement in my face. My facial muscles were paralyzed so they didn’t produce electrical impulses. Since they didn’t produce electrical impulses biofeedback wouldn’t work for me. After watching the screen while adjusting the electrodes the doctor decided he couldn’t do anything for me. I was disappointed. I had imagined myself with a big smile again and placed all my hope in this doctor being able to help me.
Despite the disappointment we spent some tourist time there. We visited Disneyland for a day and toured Universal Studios the next. It was really cool to see how Hollywood shot movie scenes and made things appear a certain way for the camera. There were no sides on the tour bus. Every now and then a man dressed as Frankenstein suddenly poked his head into the bus to give us a scare. He got a lot of gasps followed by laughs and I laughed with them. That evening we drove around Rodeo Drive to find the homes of the movie stars. Next day was the long flight home.
I turned 16 in June of 1975. Like most 16-year-olds I wanted to get my driver’s licence and I vowed to get it before I turned 17. I passed the application for my learner’s permit. Now I could practice driving with a licensed driver with me, usually Mom or Dad, and take driving lessons. I took lessons with two driving schools and got a lot of practice driving my parents around town. When the instructor thought I was ready we booked a driving test. After a third test I got my licence in May of 1976 one week before I turned 17.
Mom was waiting for me when I got back with the good news. She gave me a big hug and disappeared for a moment while I sat down relieved at the kitchen table. She came back with a set of car keys that had been waiting for me since my first test. I proudly put them on my key ring.
Driving afforded me the ability to expand my world. I could go places, see friends, meet new people and run errands. Most importantly I experienced different situations that the limited mobility I had in those years after my recovery would not have allowed. This was especially poignant to me because I well remembered what losing my independence to my failing health was like while I was in a wheelchair.
My health issues continued. Another consequence of my facial paralysis was that my lower lip tissue stretched so that it curled out and down because of the lack of muscle support. By July of 1975, I was getting leather lip where the lip skin grows back into the mouth. I saw a plastic surgeon who proposed a simple procedure done under a local anesthetic. He would cut a wedge out along the inside of my lower lip which would raise it up when the two sides of the gap were sown together. This seemed like a good solution. The only drawback was that since my lip tissue would keep stretching and curling down I had to have this surgery every four to five years.
The following October I was back in Toronto at the Wellesley Hospital for the surgery. I was brought into a small OR while still in my street clothes. I got up and laid flat on the operating table and they covered me with a green sterile sheet. The surgeon marked out on my lip where he had to cut. Then came the needle. Starting on my right he poked my lip and injected the freezing. EXCRUTIATING! I gasped each time he injected the freezing as I laid there as rigid as a board trying my best to endure the pain. It took five pokes to freeze my lip all the way across. Next he picked up a scalpel in his right hand and forceps in his left. He started to cut out the wedge pinching the end of it with the forceps. As he cut along the lines I could see an ever increasing length of tissue that was once part of my lip. Blood trickled down my throat. After he cut the wedge out he proceeded to stitch me up. The freezing was wearing off as he was finishing just as he said it would. I felt the last few stitches going in. It took half an hour from start to finish. I walked out of the hospital accompanied by Mom with a swollen, bloody, stitched–up lip. My lip healed during the next two weeks.
Over 22 years I had this procedure four times – two at the Wellesley Hospital in Toronto and two at St. Joseph’s Hospital in Thunder Bay. I still wonder if cutting with the scalpel would have hurt less than injecting the freezing.
I never gave up on the hope of regaining the ability to smile. So in 1977 I was excited to discover a doctor at the Cleveland Clinic in Ohio had developed a new surgical technique to help people with facial paralysis. It involved rerouting a sensory nerve from the front of the neck and attaching it to the obicularis oris muscle surrounding the mouth. If it worked I would be able to move my lips again. But there was a trade off. I would lose the feeling in an area of my throat in exchange for regaining the use of my lips. It was a trade off I was willing to make.
Mom, Dad and I flew to Cleveland to see the doctor. He said he could do the procedure the next day. If I wanted to go ahead with it he had to know soon so he could book the OR. I had an hour to decide. At 17 this was the first time the decision to have surgery or not was mine. It was a huge decision to make on the spot. As I thought about it I said to myself, “Why am I here? He can do it tomorrow so let’s go for it.” My answer was an enthusiastic, “Yes.” I had to get pre-op bloodwork, have an ECG and be at the clinic for 6:00 the next morning.
To get the obicularis oris muscle to function fully the doctor would have to take a nerve from the right side of my throat and try to attach it to the right side of the obicularis oris muscle. Then he would do the same with the left. He would do both sides if the right was successful. When I woke up after surgery only the right side of my throat was bandaged. The surgery was unsuccessful. Since the muscles in my face had lost their nerve supply five years before they had wasted away. The doctor could not find any trace of the obicularis oris muscle to attach the nerve to so he put it back in my throat. It took six months for the feeling to come back.
It was the second try to regain at least some movement in my face. Again I was disappointed. Biofeedback couldn’t help me and the surgery in Cleveland was unsuccessful. My quest to find someone who could give me facial movement was like Dorothy searching for the Wizard of Oz. But I didn’t want a heart of courage – just a smile.
“Someday I’ll get my smile back.” I was confidence that another surgical technique would be developed.
That fall Aunt Josie, Mom’s sister, and Uncle Jimmy came to visit us from London, England. I was apprehensive. My appearance had changed so much since I saw them seven years earlier when Mom took me overseas to visit the relatives when I was ten. I didn’t want them to see me until my facial muscles had regenerated and I was back to looking the way I was then. When we met I was no different to them. Their acceptance encouraged me to come to terms with the changes in my body. I had adapted to my balance and co-ordination issues but I hadn’t fully accepted my facial paralysis. I still clung to the hope that somehow the cranial nerve would regenerate and I would get the movement in my face back. The cold, hard fact was the nerve would never regenerate. My Aunt and Uncle’s acceptance of me, despite the changes in my body, helped me accept who I had become.
“I’ll have facial paralysis for the rest of my life!”
The thought fell on me like a ton of bricks. I couldn’t grasp a sense of how long that was, but I accepted that facial paralysis would always be part of me.
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Getting Back Out There.
In January of 1975, when I was 15, I was back at Sick Kid’s to have my eyes straightened once more by the same surgeon who had operated on me when I was eight. This was minor compared to what I had just been through. I knew the surgeon, I knew the drill and I knew the hospital. I spent two nights in the hospital, one night in a downtown Toronto hotel and then home to Thunder Bay. Two weeks after surgery the stitches were out and I got back to my daily routine. With all the trials of surviving my brain tumour behind me I was confident my life could move forward.
Dad and I began building projects again. Dad introduced me to electronics. I soldered resistors, capacitors and transistors together by following schematic circuit diagrams with my trusty magnifying glass. Dad helped me by guiding my hand as I held the soldering iron until I could do it on my own. My most ambitious project was a radio. When it was assembled it wouldn’t work. After examining the schematic diagram I concluded that I hadn’t followed it properly. All the same I had fun piecing the radio together.
I got a rock tumbler and started polishing small bits of amethyst. Dad helped me glue the polished rocks onto jewelry mounts purchased from a craft store until I could do it competently for myself. I made pendants, bracelets and broaches and gave them away to Mom, her friends and the church bazaar to sell at their craft table.
I believe that challenging my eyes to focus on small rocks and electronic components helped to clear them. My eyes were like muscles that had been weakened by illness and needed strengthening. Once they were strong enough my eyesight became clear again. The dexterity needed to solder electronic components together and to make jewelry improved my co-ordination by making my fingers manipulate small objects.
By the time I finished homeschooling in 1976 the world was much clearer. I could see large objects in detail such as cars and people but reading remained a problem. Lines of 12 point serif text were still hard going – especially a full page of text. My eyes gave out toward the end of one page. They hurt and I had to stop to rest them.
I was probably physically well enough to attend high school by September of 1975. But the outside world had changed dramatically. Maybe the outside world seemed different because I had changed. I had spent two years inside the house. How would people accept me with my facial paralysis, poor balance, and the way I spoke? These questions swirled around in my head and made me anxious about the world out there that was so unfamiliar to me now – the world I wanted to re-enter – the world I yearned for but was fearful of. Home was what I knew and where I felt safe. Like a chick ready to hatch I pecked away at the inside of my shell of fear. Once I got out of my eggshell I liked being out as much as any teenager. The people who knew me were glad to see me back out in the world. With youth on my side and with the support of my family and friends I quickly adapted to the changes in my body, my life and how I had to interact with the world.
At age 15 I began to venture out into the public. People had a hard time understanding me. Their difficulty was due partly to me not moving my lips to pronounce words and not making facial expressions. As well my tongue was a half step slower and my articulation was poor. People would be confused. It sounded like I was talking to them but it didn’t look like it. Dad suggested that I had to animate myself by moving my head or hands while I spoke so people would know it was my voice they heard. It helped.
When I went to a coffee shop or restaurant I learned to point to whatever I wanted on the menu. When the server looked at what I pointed to, and wasn’t looking directly at me, I asked for what I wanted. This worked well. More often than not I was understood because he or she didn’t see me say it.
Another technique I learned to help people understand me was to put my hand in front of my mouth when I spoke as if I was scratching the bridge of my nose. My hand masked my mouth so they couldn’t see my lips. This was effective especially when pronouncing bilabial sounds like “b”, “m” and “p”.
People including me hear with their ears and listen with their eyes. That is we lip read. When I speak, since I don’t move my lips, it doesn’t look like what I am saying. Some people are not fazed at all. Others have difficulty with my “accent” initially and I understand this. Still there are those people who are completely floored. I see a wall go up, a glaze cover their eyes and an aghast expression that says, “I can’t understand this person.” These people I find very frustrating. I’ve been given a pad and pencil more than once to write down what I said. Communication on the phone has always been easier because people can’t see me and must hear and listen with their ears.
One day in May of 1975, I was walking through Grandview Mall, a small shopping mall near where I lived. In passing I met Mrs. D who was a friend of Mom’s. We said hello and I continued on my way. She was speaking to Mom a few days later and said, “Brian gave me the nicest smile.” The fact is that I couldn’t have physically smile at her but I left her with that impression. I took note of that and began to watch how people are left with an impression.
Something else that affected my interactions with people was that I didn’t smile when I laughed. I learned to wait a second. When they weren’t looking straight at me I laughed at what they said. This largely solved the problem. Since they weren’t looking directly at me when I laughed in their minds I smiled.
My whole life has been one of adapting to ways of doing things varied from the “usual” way people do them. Sometimes I had to cajole people into letting me try. More often than not they found I could do it. My methods were at times unorthodox but I got there. I set a ground rule for myself, which was, whatever I start I finish. Anyone who knows me can tell you that I don’t damned well quit.
I found that, as a group, women are the most impressionable people who use a lot of body language. This was most apparent when I was at a party and watched two women have a conversation using only body language. No words were spoken. “Cool,” I thought. From then on I watched how women express themselves using body language. I adapted it to help me convey my thoughts when I speak. It works well and it’s not surprising that women are generally the first to pick up on it. Be advised ladies I’m looking at more than your legs.
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Brian Wins!
1974 began with me clunk-stepping my way around the house. It was slow going but at least I could get about. Using the walls and furniture for support was no longer an option. I had to keep my knees locked when standing or walking. If they buckled even slightly down I went. I had to climb furniture to get up again. If I fell in a hallway with no furniture around I was stuck. Mom suggested putting a horn on the walker so I could honk for help. Dad fixed a bicycle horn to the walker. At the same time he attached a blue plastic bicycle basket to the top crossbar. This simple basket afforded me a lot of independence. I could do things like get something from the cupboard, drop it in the basket and take it to the kitchen table. It may not seem like much to an able-bodied person but after months of having to depend on other people to do everything for me except breathe I welcomed the freedom.
Dad pushed me around in a wheelchair when we went outside. All street curbs were square. If we were going down a sidewalk and we wanted to cross the street, we had to wheel down the sidewalk of the adjoining street to find a driveway to take us to street level, cross the street, go up an adjacent driveway to the sidewalk, go back up the street and continue down the sidewalk that we were on originally.
Dad and I wanted to see a hockey game at Fort William Gardens in January. Dad phoned the Gardens to find out how to get access for someone in a wheelchair. He was told that he had to wheel me in the back way where they herded the circus elephants, go under the stands and stay at ice level. When I heard this I said, “No.” Why couldn’t I go in the front doors like everyone else? Why shouldn’t I?
In February the doctors started another attempt to wean me off decadron. They lowered the dose as before but this time they replaced the decadron with prednisone. This regimen worked for me and by midsummer I was off all medication.
Prednisone: A synthetic corticosteroid medication used to reduce swelling and inflammation.
As the dose of the medications decreased my legs got stronger, my eye sight started to clear, my co-ordination, speech and swallowing improved, and I was expanding my chest again. My clunk-stepping was faster and I leaned less on the walker. I started to lift my walker and take two or three steps. I felt a wonderful sense of achievement because I knew in my head and heart I would walk again.
At long last it was time to put the walker aside and take a step without support. I was nervous. I remember standing beside the fridge in the kitchen. I held the walker beside me with my right hand and firmly grasped the counter with my left. Then I let go of the counter and walker. With my arms spread wide I stepped forward into Mom’s waiting arms. With daily practice that one step became two then three then four. I can’t adequately describe in words my sense of joy, freedom and accomplishment in taking that one first step.
I have always loved the rich character and ornate architecture of 19th and early 20th century buildings. But I am dismayed at how they were designed with only able-bodied people in mind. These buildings have been retrofitted to be wheelchair accessible. However they can never be as accessible for persons with mobility problems as modern buildings that are designed to accommodate people in wheelchairs. Even though I can walk, because of my mobility problems due to my poor balance, retrofitted buildings are harder for me to use. I should have started Grade 9 at Hillcrest High School in September of 1973. Because of my health I couldn’t go.
I should have started Grade 9 at Hillcrest High School in September of 1973. Because of my health I couldn’t go. My parents arranged with the local Board of Education for me to receive my high school education through the home schooling program set by the Ministry of Education in Toronto. I guess you could say my high school was 909 Yonge St. in Toronto. When asked I say, “Hillcrest,” to avoid explanation.
Academically I received a thorough high school education. What I missed out on was the social part of going to high school. When I attended LU I listened to my classmates talk about the parties and outings they had with their high school friends. I missed all of that.
The Ministry mailed the texts and materials to me. At home I wrote out the assignments onto a note pad of lined paper with a section at the top of each page for name, date, course and assignment number. I tore the pages off the pad, put them in the envelope provided and return them to the Ministry for marking.
At the time I started the high school correspondence courses my writing was reasonably legible although my hand was slow. Given my blurred eyesight my writing stayed on the lines of the page for the most part. But because of my poor vision I couldn’t read the books or instructions. Mom began reading the books to me. For three years we sat across from each other at the dining room table. She read course instructions, assignment questions, text books, short stories, novels and plays as I made notes. I best remember the dystopian world of Fahrenheit 451 where a government tries to suppress the knowledge of its people through burning books. It was scary. Never had I imagined such a society could exist. I was inspired as I listened to The Miracle Worker, a play about the fortitude of a young woman, Anne Sullivan, who taught Helen Keller, a deaf/blind girl, to read and write. Helen Keller became a personal hero as I learned about her resolve to conquer her disabilities just as I was trying to overcome mine. The correspondence courses didn’t start in September and finish in June. They went all year round which allowed me to work at my own pace.
On the other hand math was Dad’s domain. He read the math texts and course assignments to me. However it’s hard to read out an equation so the listener can understand. So Dad and I sat beside each other. I made notes as he read. When I needed to I held my magnifying glass over the equation or formula to read it for myself.
After the first year of study my eye sight began to clear, my hand was faster, my writing was more legible and it stayed on the lines more. Even the teacher who had been marking my assignments at the Ministry of Education in Toronto noticed the improvement.
Christmas of 1974 was a happier time than the last. There was no doubt in anyone’s mind I would live. I was getting steadily stronger, speaking more clearly, no longer incontinent and able to do more things for myself. The year 1975 would be a time I could look to the future once more. Brian wins!
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My Game – Second Period – The Game Is Tied
Second Period. The game is tied. A week and a half after I was sent back to the neurosurgical ward at Sick Kids I was transferred to Princess Margaret Hospital in Toronto to receive the radiation therapy treatments. I met more kids there all of whom had been diagnosed with one form of cancer or another. Even though I didn’t have cancer I would receive the same radiation therapy. Two of them were from Thunder Bay – a little four year old girl named Tina and a boy, John, who was a year younger than me. John and I quickly became friends.
Tina returned home with her mother a week after I got to Princess Margaret. Dad and Catharine had to go back to Thunder Bay at the same time and the four of them travelled together. Sadly Tina didn’t live to see Christmas.
John returned to Thunder Bay before I did only to be admitted to McKellar Hospital for more treatment. The doctors in Toronto felt they had done all they could for John. They sent him home for one final attempt to save him. John lost his life to cancer near Easter of 1973. When I found out I was shaken. I never knew the actual date he passed away but every Easter I think of John.
Although I appeared sicker than most of the kids in that hospital ward with my poor balance, unsteady motion walking and slurred speech, the one thing I had going for me was that I didn’t have cancer.
In preparation for radiation therapy an orderly brought me downstairs to have a plaster cast helmet made. The technician sat me on a chair and donned a tight, stretchy, rubber sort of shower cap on my head that covered all but my face. She covered the cap with strips of cloth soaked in Plaster of Paris. She said, “Sit there for 20 minutes while the plaster dries and don’t turn your head.” Staying still for 20 minutes was the hardest part.
When the plaster dried she picked up what looked like a carpet knife to halve the helmet. She started by running the point along the middle of the top of my head from my forehead to the crown and down the back. I gasped as I felt her run the knife along the top of the helmet. She made a second pass and finally a third. The two halves parted and I could breathe again. The shower cap came off and it was over.
I saw the helmet again a week later at my first treatment. The Chief Radiologist at Princess Margaret decided to treat my tumour by administering 5,250 rads of radiation over a course of 30 treatments from late November 1972 to early January 1973. Blast the hell out of it!
Rad: Radiation Absorbed Dose is the unit for measuring the amount of ionizing radiation delivered to the body.
An orderly walked me down to the radiology department for my first treatment. The radiologist sat me on a chair in the middle of a 10×10 foot room and clipped the helmet around my head. Each half sported a 1×2 inch hole cut out around my ear lobes. I looked up and saw what looked like an X-ray machine suspended from the ceiling on rails. She guided it over to me and connected one end to the opening in the right side of my helmet. Once again I had to sit still but for only 2½ minutes. After she went into her booth I heard the machine start up. I waited. Then I heard it shut off. She came back and repeated the procedure on my left side. This would be the drill for the first five treatments. “Piece of cake,” I thought when the first treatment was over. No pain, no hassle, no problem at all. This was going to be easy.
The second treatment went differently. The next day another orderly came to take me for treatment number two. We walked downstairs. I got my radiation therapy without incident and had almost made it back to my room when I suddenly felt violently nauseous. “I feel sick,” I blurted out and hurried to the toilet to throw up. It didn’t happen after every treatment, but sudden nausea happened a number of times during my radiation therapy. The rest of the treatments would alternate between my left side one day and right the next. Adding it up at five minutes apiece for the first five treatments and 2½ minutes each for the rest I logged 1½ hours sitting in that chair being bombarded.
On the whole I was handling the radiation therapy treatments well,. The doctors decided I could to have the bulk of my treatments as an outpatient. When Mom and Dad found out how long my radiation therapy would take they knew they couldn’t spend the next two months in a hotel in Toronto. They started to look for an alternative. One evening riding back to the hotel from Princess Margaret Mom asked the taxi driver if he knew of any places nearby. “There’s a new apartment hotel called the Town Inn at Church and Charles,” he said, “You can rent a small suite with a kitchenette by the week.” They checked it out and decided to take it. The suites were modest but affordable. I travelled from there each weekday for my treatments. Mom, Dad, Catharine and I spent Christmas and New Years there together with some friends from Toronto.
After my first few treatments a doctor informed that me that my hair would fall out in the area I was getting the radiation. I imagined myself going completely bald. How could face my friends with no hair? I didn’t like this at all but what could I do? After treatment number 15 my hair started to fall out. I wore a hair net at night. I could reach back to pluck the hairs out of my scalp without feeling a thing.
The skin became tender and crisp on my ears and especially on my ear lobes – like after a bad sun burn. They were cooking my ears but they had to pass the radiation through them to get at the tumour. My ears kept getting worse until the treatments finished. The skin healed over the next two weeks. I thought my hair would grow back but it never did.
Forty years later I still have a one inch wide band of baldness going across the back of my head from ear lobe to ear lobe. I keep it covered up by letting the hair above grow over the area. I’m careful to point this out every time I get a haircut with instructions to leave the hair longer there to keep that spot covered. Hair stylists are generally okay with this. Some have commented on it being an odd place to be bald.
“Yes, isn’t it?”
When I was in Princess Margaret Hospital I started to get headaches during the night. I walked out to the nurse’s station to tell them only to be given two aspirin and told to go back to sleep. One evening I discussed this with a nurse on duty. She realized I hadn’t had a bowel movement since the day before surgery and I was badly constipated. She ordered a Fleet enema for the next day. The enema cleared my rectum and the headaches stopped. Somehow during the month since I had neurosurgery nobody checked to see if I was having bowel movements. Since I didn’t feel the need to “go” I never thought about it. I had lost the ability to have a bowel movement. The surgery must have affected the nerves for that. This meant getting a lot of enemas to keep me “regular.” Most were administered by Mom. Four months after surgery my ability to have bowel movements was coming back – or at least the feeling to want to go. It was a lot of effort at first but by eight months after surgery, when I was 14, it was pretty much business as usual.
Dad had to work and Catharine had to go to school so just Mom and I stayed in Toronto at the Town Inn for the two months while I had the radiation therapy. Dad and Catharine visited a few times and our Toronto friends stopped by as well. Mom and I went for walks around the Town Inn. We got to know the area fairly well. Our walks often took us past Postal Station F. I remember the big grey squirrels scurrying about. They had to be at least three times the size of the small brown squirrels in Thunder Bay.
My last treatment was on January 6, 1973. In the two days until we caught a plane back to Thunder Bay we packed our things and said good-bye and thank you to our friends who had seen us through the last three months. As we got ready to leave the Town Inn for the airport I reached into the closet and pulled out my Team Canada autographed hockey stick. I grasped it firmly on the taxi ride to the airport, on the plane and on the drive home.
Joe, a family friend, picked us up at the airport in Thunder Bay to drive us to our home. Along the way I happily looked left and right to gaze at all the familiar buildings and streets. It seemed I hadn’t seen them for such a long time. As we turned a corner my heart jumped for joy when I first glimpsed the sight of our house.
“I’m home. I’m finally home.”
It was a sweet homecoming and a welcome chance to breathe a long sigh of relief. We had endured the three month ordeal in Toronto. As that ordeal ended another was soon to begin.
