hope

Hope

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Hope is being able to see light despite all of the darkness..

Desmond Tutu

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Hope

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Hope is being able to see light despite all of the darkness.

Desmond Tutu

Someday I’ll Get My Smile Back

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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.

My Game – Third Period – My Fate Is Decided

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Third Period. My fate is decided. My brain tumour went away. It never came back. But the drastic treatment – the radiation therapy – came at a price.

Whenever I recall the whole ordeal with my brain tumour I first think of 9:00 AM, Friday, November 3, 1972. It became an anniversary date. But my struggle to survive didn’t end with those three months in Toronto. It continued in Thunder Bay. The year of hope, 1973, was the fateful year that decided whether I would live past 14 years old.

In 1972, the radiation therapy could only be targeted at an area. Along with killing my tumour it caused a lot of collateral damage. As the doctors predicted a delayed reaction started six weeks after the treatments ended. Up until the radiation therapy reaction began my co-ordination, balance, swallowing and speech were improving – and my smile was getting broader.

When the radiation therapy reaction set in, my brain tissue in the irradiated area swelled blocking the normal flow of cerebrospinal fluid (CSF) that caused the intracranial pressure (ICP) to increase which would kill me if left untreated. The doctors were ready for this. When the reaction began they put me on decadron medication to keep the swelling down.

Cerebrospinal fluid (CSF): The fluid circulating in and around the brain.

Intracranial pressure (ICP): The pressure of the CSF.

Decadron (dexamethasone): A steroid medication used to counteract swelling and allergic reactions.

As the reaction progressed my face became completely paralysed. The 7th cranial nerve controlling the muscles in my face died leaving me with no facial movement at all. My speech became more slurred. My eyes turned in giving me double vision again. I had more difficulty swallowing. I had to chew each mouthful of food thoroughly and wash it down with milk. My co-ordination and balance got steadily poorer. I had so much trouble handling utensils at the dinner table that Mom spoon fed me. I started to use a cane when I was outside. In the house I used the walls and furniture to help me get about.

Trying to communicate wore me down. Since my lips were paralysed I couldn’t press them together to pronounce letters like “b”, “m” and “p” properly. In time I learned to pronounce all letters fairly well with my tongue. But my tongue was getting slower. I was frustrated day after day as I lost my ability to communicate through speech. Not being able to make facial expressions like raise my eye brows, frown or smile added to my communication problem. Now not only was my smile gone but my mechanical speech as well. Mom and Catharine were the first two people to catch on to my new way of speaking. I called it my accent. Dad and my friends took a bit longer. Dad seemed more disheartened than me at not being able to understand what I said. It didn’t take him long to catch on.

I felt trapped. My world was caving in on me. Many of my days were filled with desperation and helplessness as I succumbed to my declining health. I was heartbroken having to let people do more and more of the things for me that I used to do for myself. I could at least have bowel movements again by September but somebody, usually Mom, had to clean me up. I had the humiliation of becoming incontinent and was wetting the bed at night. There I was 14 years old and wetting the bed. I was so embarrassed. In the back of my mind was the fear of what my uncertain future may bring.

Only one activity lifted my spirits. Dad took me out for a drive every evening after supper. It gave Mom a breather after taking care of me all day. We often stopped at Chippewa Park. Arm-in-arm Dad helped me slowly walk around as much as I could which wasn’t very far. We often stopped at a Dairy Queen on the way back and I’d get a Dilly Bar, my favourite. I looked forward to our drives every evening. Dad and I shared our thoughts about a current event or Dad told me a story about his youth in England. It took my mind off my desperate situation and kept a glimmer of hope in me that one day I would overcome this.

When we returned home I told Mom about my adventure. We watched TV or I just said good night to her and make my way to my room. Dad helped me get ready for bed. I sat in the chair beside my bed and Dad, often assisted by Catharine, gave me my tooth brush and held a bowl for me to spit in. When that was done I crawled into bed. Then Dad sat in the chair beside my bed. As I lay tucked tight with the room light off and just the light streaming in from the hallway Dad read to me. Dad liked reading to me as much as I did listening. It was soothing to both of us.

Dad chose several wonderful books. Farley Mowat became my favourite author as I listened to many of his works. My favourite was the warm and funny story of Mutt in The Dog Who Wouldn’t Be. By the time Dad had finished the book I felt as close to Mutt as if he was my dog. Dad introduced me to Stephen Leacock’s colourful wit and humour in Sunshine Sketches of a Little Town. He read The Mapmaker about David Thompson, who surveyed much of North America in the 1800s and who kept many of the maps he drew in Fort William right where we lived.

I can’t recall when Dad stopped reading to me every night. When I started to feel better and more confident with life he tapered off. In my mind I can still see and hear Dad reading to me as he sat by my bedside illuminated only by the light from the doorway.

My parents were distraught by my failing condition. The doctors said it was likely the result of neurological damage caused by the radiation therapy. My health would stop deteriorating when the radiation therapy reaction subsided. If my brain tumour was the reason they were at a loss for options as to how else they could treat it.

Was the radiation therapy the cause of my declining health? If my brain tumour was still growing could the doctors find another way to deal with it? Would my brain tumour prove to be untreatable? Only time could provide the answer. For the time being my only option was to stay the course of the long months of decadron treatment. As it turned out, time showed the radiation therapy to be the cause.

Decadron irritated my stomach which made me feel hungry all the time. With a good appetite and decreasing mobility I quickly put on weight. During the year I was on decadron I doubled my weight from 80 to 160 pounds. I have the stretch marks and flat feet to prove it.

Decadron also promoted premature closure of the ends of my long bones. When the long bone ends close normally after the growth spurt in adolescence you stop growing taller. A doctor in Thunder Bay took angled X-rays of my leg. He told me I should have been 5’10” instead of 5’4”. It’s safe to assume I should have been at least as tall as Dad who was 5’9”. A few more inches would have been useful but it’s hard to miss what I never had.

A week after got back from the Toronto ordeal I went back to school excited to catch up with friends and finish Grade 8. A month after I returned to school the radiation therapy reaction set in. I could no longer physically attend school. I was upset. My friends came to see me at home but as my condition worsened they stopped coming. They couldn’t handle seeing my health decline. I couldn’t blame them because I would have done the same thing in their place. The school board arranged for supply teachers to drop off text books and assignments at the house in the morning on their way to work. This didn’t work out. So the school board found a teacher, Olga, who had retired to raise her family. She came twice a week to help me with her four year old son, Lornie. Lornie kept Mom entertained with his stories while Olga taught me my lesson. Between Olga’s visits I worked on the assignments she gave me. Olga made schooling both interesting and fun and with her guidance I finished Grade 8. In those few months Olga became more than my teacher. She is a good and valued friend that I stay in touch with to this day.

By September, 1973, it was time to get off decadron. It was not just a matter of stopping the medication. My body had become used to it. I was hooked. The doctors started the process to wean me off decadron by first lowering the dose gradually over the next few months. They started me on cortisone acetate along with the decadron.

Cortisone acetate (glucortizoid): An adrenocortical steroid medication used to reduce swelling and inflammation.

The plan was to take me off decadron altogether by getting the cortisone acetate to take over keeping the swelling brain tissue in check. Then they would stop the cortisone acetate. The doctors examined me every two weeks for signs of ICP build up to see if things were going as planned. If this regimen didn’t work my brain tissue would swell, block the flow of CSF and make the ICP increase. They lowered the dose of decadron. If I said I felt all right they left me on the lower dose for two weeks. If I was still okay they decreased the dose some more.

I wanted to get off decadron. In my mind getting off it was the remedy for all of what was happening to me. I said I was fine when I really wasn’t. It didn’t hurt but my head just didn’t feel right. It was like everything was churning away inside.

“Soon I’ll be off decadron,” was all I thought about, “I can put up with my head until then.”

As they decreased the dose of decadron and simultaneously increased the cortisone acetate the worse my head was. But I wouldn’t give in. The cortisone acetate wasn’t keeping my brain tissue from swelling like the decadron had.

One evening in mid November Catharine and I were watching TV in the den. She noticed me becoming nauseous and ran to get Mom and Dad in the living room. When they got to me I was already throwing up. Mom being a nurse recognized the signs of intracranial pressure build up. My brain tissue had started to swell. They rushed Catharine down the street to the neighbours and me to Emergency at McKellar Hospital.

The doctor who had monitored me just a few days before examined me. He had no explanation. There was no sign of pressure build up those few days prior. My brain tissue suddenly swelled making the ICP spike. He admitted me, injected me with a big dose of decadron and hoped the medication would reduce the swelling to relieve the pressure. Dad went home to stay with Catharine and Mom stayed the night at the hospital. The big question now was – would I make it through the night?

The decadron did its job. This meant I was back on full doses of decadron and another attempt would have to be made to get me off it. The doctor quickly scheduled me for neurosurgery to have a CSF shunt implanted in my head to prevent this situation from happening again.

CSF shunt: A long flexible plastic 1/8 inch diameter tube inserted into a ventricle cavity in the brain that allows the CSF to flow even if its natural course is blocked. If the CSF flow is blocked the CSF accumulates in the reservoir of the shunt. The resulting increase in ICP opens a pressure release valve in the reservoir which allows the CSF to drain away into the abdomen to relieve the pressure.

On November 17, 1973, just over one year after my first neurosurgery, I was in the OR in McKellar Hospital. Surgery went smoothly. Again I hallucinated but not as much as before. I spent the next three weeks in the hospital. The shunt will be forever in my head. I no longer need it but it would be another surgery to take it out.

When I woke up the morning after being admitted to McKellar I couldn’t see clearly. Blinking and rubbing my eyes didn’t help. An eye surgeon was called to examine my eyes. The sudden ICP increase damaged the blood vessels in the backs of my eyes making them bleed which caused my vision to blur.  After examining me the eye surgeon expressed to my parents his concern that the damage could be permanent. Mom and Dad downplayed the news to me. They said that the eye doctor said it would take a while for my eyes to get better. I was disappointed by the news but I remained optimistic. It was yet another harsh blow in what had been a year of one heart break after another. Over the following year my eyes gradually healed.

One evening while I was in McKellar after neurosurgery a very thoughtful nurse named Laura from the neurosurgical ward gave me some large print books to read. She had gone to the library after work and picked out some books she thought I would like.

I made it home two weeks before Christmas. My time in that hospital bed left me unable to walk without a lot of help. We rented a walker from the Red Cross which I started using when I got home. It was a light aluminum frame that I lifted ahead of me with a clunk and stepped up to it. When it came time to trim the Christmas tree I had to sit in a chair and watch Mom, Dad and Catharine decorate it. With legs that wouldn’t support me, poor co-ordination, double vision and now blurred eye sight I was unable to help. Still I was home.

I did my Christmas shopping that year from a wheelchair with Dad pushing me around the malls. I quickly learned how hard it is to get around slushy parking lots and through narrow, closely-set double doors that many stores had in the 1970s. We celebrated Christmas as we did every year with all the cakes, goodies, roast turkey, and friends stopping by with their Season’s Greetings. I know they wondered if this Christmas would be my last.

On New Year’s Eve we raised a glass to toast 1974 with Johnny Carson on The Tonight Show as the ball dropped in New York’s Times Square. A new year had arrived and with it came renewed hope. Score!