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Appendix: Taking Stock – My Disabilities

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Appendix

Taking Stock – My Disabilities

In June of 1976 the doctors at Princess Margaret Hospital were satisfied my tumour had been successfully controlled. Tumours have a habit of growing back or showing up in different parts of the body. Mine never did. I was treated for my tumour and that was that. The condition my body was left in after I recovered from my radiation therapy reaction hasn’t changed in 40 years. Except, of course, that I am 40 years older and all the effects of aging that happen normally to everyone else are happening to me – those little aches and pains, grey hair and bifocals.

It never occurred to me until writing this memoir that the doctors would only say they controlled my brain tumour and not that they killed my tumour as I do. I guess they could never be 100% certain that they eradicated it but only hopeful that they had. After 40 tumour-free years I can safely proclaim my brain tumour dead and gone.

As I recovered from my radiation therapy reaction everything I did was by conscious thought – every hand movement and every step. I remembered doing all of these things because I had to consciously think about them. When I started doing things automatically again I’d be checking myself to see if I had done it – ordinary things like pick up a mug and put it in the cupboard, turn a light off or push a door closed behind me.

After I recovered from my radiation therapy reaction in 1974 I had an acquired brain injury which left my body in the following condition:

  • Facial paralysis
  • 85% ability to swallow
  • Speech impediment
  • Ataxia – dexterity, balance
  • Muscle wasting – Upper calves, Fronts of thighs, Triceps and Lower back
  • Progressive hearing loss
  • Expanding my chest
  • Facial paralysis

My brain tumour damaged the cranial nerve controlling my facial muscles. The radiation therapy together with the reaction killed the nerve. Even though I lost all movement in my face I kept the feeling. I will never make any facial expressions like raise my eyebrows, frown, squint or have a big, wide smile.

I lost the ability to press my lips together to close my mouth while I eat and drink. Eating involves cutting up food, putting it in my mouth and pinching my lips together while I chew and swallow. If I don’t the food falls out as I chew. Pinching my lips together only approximated closing my mouth. There are times when bits of what I’m chewing fall out. I try to be diligent to prevent this from happening but it does now and again. I also make more eating noises when chewing and swallowing. I try my best but some of it just can’t be helped. Have you ever tried swallowing with your mouth open? It’s hard but you can.

I don’t have a wall of muscle in each side of my face to keep what I’m chewing in the centre of my mouth. As a consequence food collects in my cheeks. Along with pinching my lips together, I’m constantly pushing the sides of my face with my fingers to get the food out of my cheeks back into the centre so I can chew and swallow it.

Drinking from a cup is a similar procedure. I partially pinch my lips together with my left hand to approximate the form I need to drink. Then I put the cup to my lower lip supported by my thumb, pour some of whatever I’m drinking into my mouth and pinch my lips together before I take the cup away. If I don’t pinch my mouth closed right away the liquid runs down my chin.

Nobody told me, “Brian now that you have facial paralysis this is how you eat and drink.” I doubt anybody could have. It’s my solution to the problem. I hope sharing my method can help someone deal with a similar situation. After 40 years of eating and drinking this way it’s automatic. I would rather not have to do this but if I want to be as neat as I can be, and I do, this is life. My method of eating and drinking makes many people visibly uncomfortable. Their discomfort makes me uncomfortable.

Facial paralysis does not allow me to close my eyelids so that they meet. This gap means I constantly have dry eyes and need to put drops in them daily. I can open and close my upper eyelids but they are weak. Because I don’t have cheek muscles pushing my lower eyelids up I can’t scrunch my eyes shut. I have to cover my eyes when washing my hair or I get shampoo in the gap between my eyelids.

  • 85% ability to swallow

During 1973 and into 1974 I had to chew food well and wash it down my throat more than swallow it. By the end of 1974, 85% of my ability to swallow returned. Things I can’t chew well such as raw vegetables (carrots, broccoli and cauliflower) or dry rice get stuck in my throat. I have to wash them down with more than a sip of whatever I’m drinking. You never see me chewing on carrot sticks at a party. Celery sticks are okay. They’re a bit stringy but they go down well.

  • Speech impediment

After my radiation therapy reaction recovery I was left with a tongue that was a half step slower than average. I have to pronounce all sounds of speech with my tongue. This impedes my speech. Not being able to alternate between lips and tongue to pronounce words further slows my speech. Over time I learned to mimic the bilabial “b,” “m” and “p” sounds closely with my tongue. The fact that I don’t move my lips to pronounce these letters confuses people at least at first. This adds to my communication problem.

Ataxia: The impairment or inability to co-ordinate voluntary muscle movements. It is symptomatic of some central nervous system disorders or injuries.

Ataxia – dexterity

I always knew my dexterity was slower than most people’s because of the damage caused by my brain tumour and treatment. Not until I was 52 did I get it tested. It’s now official. According to the General Aptitude Test Battery results I am half speed. That is I flip ten pegs to the average person’s twenty in the allotted time. Although my hands are slower I can manipulate most objects fairly well. This affects my hand writing which makes it less legible. I found one of my Grade 5 school workbooks. I think I had better hand writing back then. My top typing speed is 20 words a minute. Not bad. I keep practicing but my fingers don’t seem to want to move any faster.

As I said every hand movement I made after my recovery required a conscious thought to control it. I could reach for and pick up a cup as I had always done but it had become clumsy. So I closely watched the cup as I concentrated on my task. I consciously thought out the hand movements involved in reaching for the cup, grasping hold of it and picking it up. Then I slowly reached for the cup. I did this for every object I used. After a year of practice I became fairly proficient at manipulating most objects.

Ataxia -balance

The increasing loss of balance was one of the symptoms which lead to the diagnosis of my brain tumour. My balance was poor when I went to Toronto in 1972. It got worse during my radiation therapy reaction in 1973.

Over time I adapted to it. I observed after learning how to walk that one important aspect of maintaining my balance is where I placed my feet when walking or turning on the spot. When I lost the ability to walk I forgot where to place my feet so I wouldn’t lose my balance. Paying close attention I learned proper foot placement. Because of the ataxia I’m slower placing my feet in the correct position to prevent losing my balance. Improving the muscle tone in my legs and lower back helped improve my balance as well.

My sense of balance is poor and will always be. The neurological damage that caused it is permanent. I’m always watching where and how I can best walk over different terrains. I’m frustrated by my mobility problem at times but I only have to think back to my walker and wheelchair to snap me out of it.

One fear I have is being pulled over by the police and asked to walk a straight line – heel to toe. I can’t do it regardless of my state of sobriety. The same goes for blowing on a breathalyzer straw. I’ve never been asked to do either and hope I never am.

Muscle wasting – Upper calves

The muscle wasting in my upper calves was one of the symptoms of my brain tumour noted by the doctors in 1972. As this muscle wasting developed I found it harder to hop as in Jumping Jacks.

  • Fronts of thighs

The wasting of these muscle groups occurred during my radiation therapy reaction. When I was walking again, and felt confident enough to run (trot), I found when I got up to a certain speed I’d trip and fall over. “What did I trip on?” I’d ask myself as I looked around. I realized that the thigh muscles weren’t strong enough to lift my knee fast enough to take the next stride. This is still the case. Weakness of the thigh muscles contributes to my balance problem.

  • Triceps

I first noticed how weak my triceps were after my radiation therapy reaction recovery when I was next door shooting hoops with a friend. I’d take the basketball in my hands. When I threw it up to the hoop by pushing it I could only throw it three quarters of the way.

  • Lower back

It was during my radiation therapy reaction recovery when I first found that my lower back muscles were weak. I pulled a lower back muscle lifting something fairly light. I could only be down on my hands and knees while gardening for 20 minutes. After shoveling snow my lower back would hurt and seize up and I had to lie down to rest it. Not until I was 50 years old did I think of strengthening my abs to do some of the work for my lower back. It really helped.

Light weight training and daily exercise helped strengthen all of my muscles but the muscle groups that had wasting are weak. I didn’t get stretch marks until my radiation therapy reaction and being on the decadron medication. The only places I have stretch marks are over the muscle groups where the wasting occurred.

Progressive hearing loss

The condition my body was left in after my radiation therapy reaction has pretty much stayed the same except for my hearing. When I was twelve I remember not understanding some of the words spoken to me even though I had no trouble hearing them. Thinking back it was a symptom caused by my brain tumour that was considered to be me not paying attention. My tumour was starting to press on the auditory (8th cranial) nerve. The radiation therapy caused partial destruction of the myelin sheath around the auditory cranial nerve which further restricted its action. I’ve had progressive hearing loss ever since. My hearing in both ears has degraded to the point where I’m dependent on hearing aids to function.

Expanding my chest

By the time I was diagnosed and treated for my tumour I had lost the ability to expand my chest. During 1974 it gradually returned. It’s the only body function I lost or was losing to my tumour that I fully regained.

In 1973 at one point I had lost most of my dexterity and co-ordination so that I could barely feed myself, swallow, or speak. I get tense remembering my frustration and heartbreak as I gradually lost my independence. I regained these functions in time, albeit not fully, but I am aware of what might have been. Sometimes I ask myself, “How close did I come to staying that way?” With the help of family and friends and a lot of determination I was able to cope through the ordeal of my brain tumour and recovery. I put my walker aside and I got out of my wheelchair. My sense of balance is as poor now as it was then and always will be. The muscle wasting in parts of my legs, arms and lower back has left those muscles weak. I will always need to use a handrail to steady myself going up and down stairs. At times I feel that I never left that wheelchair far behind. Still I got out of it and I never want to have to sit in one again.

As I take stock of my life I ask myself, “If this didn’t happen to me what would life have been like?” Would I have gone through my teen years like most teenagers? Maybe I would have been married in my 20s and soon be celebrating my 25th wedding anniversary. I might have had a family and possibly have grandchildren by now. Or maybe I’d have remained a bachelor. I may be living half way round the world and never been a chemist or entrepreneur. The possibilities are endless. Things may have been different for me but the way everything has turned out just might be the way they should be.

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!