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!
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 …?”
“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.
The day after I got back I started reintegrating into Thunder Bay life. When I was renovating the Whalen Street house I became interested in Interior Design. That September I signed up for an evening course at Confederation College called “The Theory of Colour,” the first of five courses which I took over the next year and a half to earn a certificate in Interior Decorating. I was the single male out of an average 20 participants in each course. At first I felt like a fish out of water. But I got to like being the only man there and I developed a good rapport with the ladies. To this day Interior Design is a keen interest of mine.
Dad’s parents wanted him to be a commercial artist but Dad had his mind set on becoming an engineer like his Uncle Ted. Dad was always doodling caricatures of people and he was good at it. I’ve kept all of his drawings and one of his paintings hangs over my desk. I wondered if I had inherited any of his artistic skills. I signed up for a painting class as well. We made landscape and still life oil paintings and sketches. I found I did have some talent. I joined a painting group in January and found my niche in painting colourful landscapes.
I applied for work in other private labs in Thunder Bay and just about any job I thought I could do but to no avail. Nobody wanted me. There is no doubt in my mind that my general appearance shocked most potential employers. I got to know the expression on the face of a job interviewer seeing me for the first time. His/her eyes would widen slightly and gasp a bit while straightening up in the chair. They would be at a loss for words until I said hello. We politely went through the interview but I knew I didn’t have the job before we started. When I saw night work at the newspaper I applied for it. “At least nobody has to see me on the midnight shift,” I said to myself. I didn’t get past that interviewer either. The interviewers whom I met assumed my physical disabilities impaired my basic intellectual skills. That was their first impression of me and those perceptions are hard to change.
I vented my frustrations to my long time friend, Olga. She thought how unfair it was to turn someone down because of their appearance. Olga had left teaching to become a successful insurance agent and had joined a Rotary club. Twice she took me to a Rotary meeting to introduce me to her business contacts. Olga knew what I was able to do and her contacts would take her word for it regardless of what they thought when they saw me. But I shied away from Rotary. I was feeling very unsure of myself emotionally. The thought of working with confident, self-assured people was daunting. I didn’t join Rotary and I spent many frustrating years searching to find, on my own, those contacts Olga had tried to provide me with. I spoke to Olga a few years later and admitted, “Getting me out to Rotary to find contact people was exactly what I needed.”
Olga looked at me and said, “Brian, you weren’t ready for it.”
In many ways I was lost. In the split second when I found Mom dead in bed the tapestry of the protected world that my parents made for me unravelled. A big chunk of me jumped out of the middle of my chest, out through her bedroom window and away into the sky. It left a fathoms-deep, dark, cold, craggy-edged hole that I wanted to fill with whatever departed. I didn’t know what had left me but I knew I wanted it back. I felt the weight of that hole with every breath.
The effects of the shock wave that hit me that fateful morning when I found my mother dead stayed with me for a year. I shut down emotionally and yet my heart ached with an emptiness I could not suppress. Tears left me that morning and I have not shed a tear since. For the first two months I hurt twenty-four seven. As the year progressed I wasn’t hurting all the time and I felt guilty for not hurting. We’re strange creatures, aren’t we? The hurt turned into what I came to know as anxiety and depression. It was with me all the time dogging every aspect of my life – like wading through waste deep water impeding my progress to do things. Nearly everything I did was such an arduous task that any feeling of accomplishment was taken away and replaced with relief that it was finally done. For ten years I searched for a way to get rid of the grief my nerves caused me.
“I don’t control my nerves anymore. They control me. If only I could find what left me I’d be better.”
Once the first year had passed my anxiety and depression were at their worst from mid November through January. Maybe it was the seasonal bleak, cold weather, the approach of the Christmas season or both. Once November set in I dreaded the coming of Christmas. When the holidays arrived I wished the days away even though I still liked the cakes, goodies and get-togethers that came with that time of year. I breathed a sigh of relief when February came and an even bigger sigh when March arrived.
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.
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.