wheelchair

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.

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Brian Wins!

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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!