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.
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.
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.
By mid October of 1972 I was having even more trouble swallowing, my balance was poorer, my speech had degraded further and Mona Lisa had a bigger smile than me. I had more air and dye studies (which they were able to complete this time). As before the results were inconclusive. The medical team decided to investigate surgically.
The last two weeks in October was a time of emotional turmoil and reckoning for me. I knew intuitively for a year before this trip to Toronto that something was wrong with me, but I wasn’t about to admit it to anyone including myself. I convinced myself that if I didn’t say anything about it or pretended it wasn’t there it would go away. I kept everything bottled up inside. Now and then something small would set me off. I became very upset and tearful. Getting away from the situation and be alone and quiet seemed the only way I could calm down. Family, friends and teachers would ask me what’s wrong when I was upset but I clammed up. How could I explain what I didn’t understand nor was willing to admit to?
At Sick Kids after enduring test after test, had many heartbreaks and shed many tears, I broke down the barriers that I had set up in my mind. I finally faced the reality of my situation.
I was moved from the general ward to the neurosurgical ward. There I found kids, some older but mostly younger than me, all waiting their turn for neurosurgery. Being with a group of kids all about to meet a similar fate made my wait easier. We quickly got to know each other exchange names and our home towns. Most of the kids were from the Toronto area. We asked each other like inmates doing time in prison, “So what are you in for?”
Our answers were always candid. I told them they were investigating my balance and speech problem which was true. By now I could admit only to myself that I couldn’t smile – a big, wide smile. I sensed that the one thing so uniquely human, to smile, was the one thing I couldn’t do. It was upsetting.
At 9:00 AM, Friday, November 3, 1972, a nurse wheeled in the gurney to take me for neurosurgery. All I could think was, “They’re taking me to the OR to cut my head open!” I was scared silly. What was about to happen to me? Was I going to wake up with a big hole in my head? I started to panic. Tears filled my eyes. I started to pant.
The nurse pushing the gurney tried to calm me down. “Take deep breaths,” she said quietly, “You’ll be all right.”
I remember being transferred from the gurney to the operating table. They placed a gas mask over my nose and mouth and the anesthetist told me to count slowly to ten.
“One, twooo, threeeeeee, fou…”
The surgeons cut from the crown of my head down the back and into my neck muscles to part my skull. They found the tumour. It was a yellowish-white mass of cells that was growing on the brainstem part of my brain, the floor of the 4th ventricle, which lead out into the spinal cord that involved cranial nerves 6 – 11. Because of my tumour’s involvement with the nerves, the cause of my symptoms, they couldn’t remove it. The surgeons took a biopsy and identified my tumour as a low grade (benign) Type II astrocytoma. The doctors wondered that since the rate of onset of my symptoms was increasing if my tumour was becoming malignant.
Astrocytoma: A brain tumour composed of astrocytes which are star-shaped cells that act like connective tissue in the brain.
Surgery lasted five hours and went smoothly. When I woke up in the ICU the first thing I sensed was a throbbing pain in the back of my head.
“My head. It hurts,” I called out.
The anaesthetic made me nauseous and I kept throwing up. I had to lie on my side and a nurse turned me every 20 minutes to prevent bed sores. The only relief from the throbbing was to lie still. It would take 20 minutes for the pain to die down which was time to turn me and the throbbing started again. Throwing up made my head throb too. Between being moved and throwing up there was no escape from the pain for two days.
As a result of exposing my brain to air I hallucinated for the first two days after surgery. People and things appeared as concretely before my eyes as if they were actually there. I interacted with whoever was at my bedside but beyond that was a world like one created on a starship holodeck. I remember seeing a crowd of people standing at the end of a short, wide hall looking at me. I spoke to them but they just stood there motionless with unchanging blank expressions on their faces. When Mom was sitting by my bed we were on a conveyer belt travelling around a large, dark wood, 1950s style gymnasium. It had a mezzanine track around it with people doing various things. We slowly moved along the floor, up onto the mezzanine, around the gym and back down again. The sensation of motion was very real.
Mom and Dad took turns sitting by my bed in the ICU. Mom and I would talk or she would sit there quietly keeping me company as I dozed in and out. Dad read to me. Unable to hide a look of concern on his face Dad said how sorry he was to see me lying there.
I said, “That’s okay Dad, I’m just the right height for when the nurses bend over.” We both chuckled. The nurses did wear their skirts a bit shorter back then and at 13 I had an eye for it.
On the fourth day after surgery the pain in my head was considerably less and my stomach had pretty much settled down. I was released from the ICU and sent back to the neurosurgical ward.
Between the kids in the neurosurgical ward the word was that you had to learn how to walk again after surgery. I resolved that there was no way I was going to have to learn to walk again after my surgery. So on the fourth morning back in the neurosurgical ward with the bed sides finally lowered and the IV out of my leg I decided that I was getting up.
I slowly sat up. It took a while to get used to being upright again after more than a week lying down. Then I gradually let my feet slip to the floor. The full weight of my body on my legs and the feeling of the floor on the soles of my feet took a minute to get used to. I held onto the bed as I gingerly walked around it. When I felt confident enough I slowly walked out of the room and down the hall. Nobody was more surprised than the nurses as I walked past their station and said, “Hi.” I was up for good and the only time I would lie down again was to sleep at night.
Two weeks after surgery I was well enough to go down to the main public area in the front of the hospital with Mom or Dad. Even though I was walking the trip downstairs was a bit far for me. So Dad pushed me in a wheelchair. Catharine hadn’t seen me since the day before surgery. As she was only nine she wasn’t allowed on the ward or in the ICU. Mom cautioned Catharine that my appearance had changed but I don’t think any amount of counselling could have prepared her. Before surgery I was thin and weighed 80 lbs. The ravages of neurosurgery and having little solid food for over a week had thinned me out even more. I was frail, gaunt and pale. When Catharine saw me she gasped and tears rolled her cheeks.
“Hi Kate,” I said and we embraced. I asked her what she had been doing the last two weeks. As we talked her shock wore off. A few days of regular food, the ability to go downstairs to change the scenery from the ward and to see Catharine and friends soon got me on the mend.
Because my brain tumour was inoperable the doctors decided to treat it with radiation therapy. Leaving it alone wasn’t an option. If my tumour went untreated my symptoms would only worsen. Eventually I wouldn’t be able to swallow at all, have virtually no balance and unintelligible speech. The biggest concern – was my tumour about to turn into cancer? One thing was for sure. Left untreated my brain tumour would kill me. The time to act was now!
When the eye surgeon in Thunder Bay examined me in August, 1966, he also found that I was going blind in my left eye since I wasn’t using it. Mom had noticed this as well. She suggested to the eye surgeon that I should wear a patch over the right eye a few hours a day to make me use the left eye so I would regain the sight in it. The eye surgeon didn’t think this would work. Mom persisted. She made me wear a patch over my right eye for two hours every evening and got my teacher to make me wear it for two hours daily during class. I regained the sight in my left eye over six months.
I started Grade 3 in September, 1966, at St. Bernard’s when Catharine began Kindergarten. I liked being a big brother and proudly walked her to school until she was older and joined her friends. We met up with each other at home for lunch and often walked back to school together. I liked running into her in the school yard at recess or when school was out.
We watched out for each other during the four years both of us attended St. Bernard’s. One time Catharine slipped on the ice in the playground and sprained her arm. She was in a sling for two weeks and I walked with her into her classroom to help her with her coat. Another time Catharine saw a boy grab a ball away from me. She wouldn’t have it. She went straight up to him to retrieve my ball and got it. Catharine was always tougher than me in that way.
In July, 1969, Mom took me to Ireland, England and France to visit relatives. I don’t know why Dad and Catharine didn’t come. It seemed strange leaving them at home and I missed them.
We had just arrived at our hotel in Dublin when I decided to turn on the radio on the bedside table. I heard Walter Cronkite saying, “six … five … four … three … two … one …… lift off, we have lift off …” Apollo 11 roared from the launch pad.
Four days later I was at Aunt Gertie’s home, Mom’s sister, in Corofin on the farm where Mom was born and raised. This was the first time in my life I remember living in the same house with my Aunts, Uncles and cousins. We ate together, talked for hours and I befriended my cousins as we played. We sat in front of a small TV set to watch the dramatic first lunar landing and hear Neil Armstrong’s famous words, “The Eagle has landed.”
The lunar landing brought to life one of my favourite TV shows in the 1960s, Star Trek. Following Capt. Kirk, Mr. Spock and Dr. McCoy as they zoomed through the galaxy on their adventures captured all my imagination. By September of 1970, the crew of the Enterprise had finished their journey, but at 11 years old, mine was only beginning.
Like Dad I enjoyed working with my hands designing and building things. When I had just turned ten Dad bought a set of Do-It-Yourself encyclopedias. He and I looked through them for a project to do.
The encyclopedias had plans for a working hover craft. It was a big challenge for me at 10 years old to carefully draw all the pieces as specified in the book, cut them out of balsa wood and glue them together. When it was finished I had a 7”x4” hover craft 3” tall. I painted it silver and red with cellophane windows at the front and an airplane tail on the back. It was a really nifty looking job. Dad helped me mount a small electric motor vertically in it. I put a propeller from a toy boat of mine onto the drive shaft.
We made a box with an on/off switch to house two D cell batteries to power the motor. When I turned it on the propeller produced enough down draft to lift the hover craft up to glide over a four sheet stack of paper. I felt as if I was on my own trek of creation – an engineer like Scotty.
I entered the hover craft in the Science Fair competition at St. Bernard’s and won. Then it was off to the bigger Science Fair at the Faculty of Education building at Lakehead University. There I was up against older kids with more impressive projects and I didn’t advance. I was heartbroken. I put my heart and soul into that hover craft as I did with most things. Dad was philosophical about it. I had given the Science Fair my best effort and that’s what counted. He was right but my pride was still bruised.
The next project Dad and I built from the Do-It-Yourself encyclopedias was a wood lathe. I had just turned eleven. It was mounted on a 4×1½ ft. plywood base and driven by an old electric washing machine motor. I turned two bowls on that lathe which I stained and gave to Mom. They sat on the kitchen counter for years holding fruit and mail.
During the year I was eleven I started to become dizzy and lightheaded when I tumbled during gym class or lay flat on my back. Sometimes I was nauseous. Once I became dizzy it lasted all day.
Several times I woke up from a sound sleep and held my mouth as I tried to run to the toilet to throw up. Mom and Dad rushed to the bathroom to help me in any way they could. All they could do was be there to console me as I threw up. The first few times this happened I was frightened.
“What’s happening to me?”
Mom and Dad didn’t have an answer. Maybe my head fell off the pillow and I had a dizzy spell. That seemed like the most plausible explanation. Once the episode of nausea was over, and I regained my breath, they gave me a face cloth to wipe my mouth and a glass of water to drink. Then they guided me back to bed. My head would be swimming and I was seldom fit to go to school the next day. My parents took me to see our family doctor but he didn’t have an answer either.
Just after my twelfth birthday my parents had a photographic portrait of me made – a family tradition (a rite of passage). In it I sported a Mona Lisa smile which looked pleasant enough but it was as big a smile as I could make at the time. Throughout that summer I started to have trouble swallowing. My sense of balance was getting poor, my speech was starting to slur and I had lost the ability to expand my chest as I was only diaphragm breathing – and my facial muscles were becoming paralysed. My parents’ concern grew as they watched my health decline. By August Mom and Dad decided that there was something seriously wrong with me. Something had to be done.