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.
Second Period. The game is tied. A week and a half after I was sent back to the neurosurgical ward at Sick Kids I was transferred to Princess Margaret Hospital in Toronto to receive the radiation therapy treatments. I met more kids there all of whom had been diagnosed with one form of cancer or another. Even though I didn’t have cancer I would receive the same radiation therapy. Two of them were from Thunder Bay – a little four year old girl named Tina and a boy, John, who was a year younger than me. John and I quickly became friends.
Tina returned home with her mother a week after I got to Princess Margaret. Dad and Catharine had to go back to Thunder Bay at the same time and the four of them travelled together. Sadly Tina didn’t live to see Christmas.
John returned to Thunder Bay before I did only to be admitted to McKellar Hospital for more treatment. The doctors in Toronto felt they had done all they could for John. They sent him home for one final attempt to save him. John lost his life to cancer near Easter of 1973. When I found out I was shaken. I never knew the actual date he passed away but every Easter I think of John.
Although I appeared sicker than most of the kids in that hospital ward with my poor balance, unsteady motion walking and slurred speech, the one thing I had going for me was that I didn’t have cancer.
In preparation for radiation therapy an orderly brought me downstairs to have a plaster cast helmet made. The technician sat me on a chair and donned a tight, stretchy, rubber sort of shower cap on my head that covered all but my face. She covered the cap with strips of cloth soaked in Plaster of Paris. She said, “Sit there for 20 minutes while the plaster dries and don’t turn your head.” Staying still for 20 minutes was the hardest part.
When the plaster dried she picked up what looked like a carpet knife to halve the helmet. She started by running the point along the middle of the top of my head from my forehead to the crown and down the back. I gasped as I felt her run the knife along the top of the helmet. She made a second pass and finally a third. The two halves parted and I could breathe again. The shower cap came off and it was over.
I saw the helmet again a week later at my first treatment. The Chief Radiologist at Princess Margaret decided to treat my tumour by administering 5,250 rads of radiation over a course of 30 treatments from late November 1972 to early January 1973. Blast the hell out of it!
Rad: Radiation Absorbed Dose is the unit for measuring the amount of ionizing radiation delivered to the body.
An orderly walked me down to the radiology department for my first treatment. The radiologist sat me on a chair in the middle of a 10×10 foot room and clipped the helmet around my head. Each half sported a 1×2 inch hole cut out around my ear lobes. I looked up and saw what looked like an X-ray machine suspended from the ceiling on rails. She guided it over to me and connected one end to the opening in the right side of my helmet. Once again I had to sit still but for only 2½ minutes. After she went into her booth I heard the machine start up. I waited. Then I heard it shut off. She came back and repeated the procedure on my left side. This would be the drill for the first five treatments. “Piece of cake,” I thought when the first treatment was over. No pain, no hassle, no problem at all. This was going to be easy.
The second treatment went differently. The next day another orderly came to take me for treatment number two. We walked downstairs. I got my radiation therapy without incident and had almost made it back to my room when I suddenly felt violently nauseous. “I feel sick,” I blurted out and hurried to the toilet to throw up. It didn’t happen after every treatment, but sudden nausea happened a number of times during my radiation therapy. The rest of the treatments would alternate between my left side one day and right the next. Adding it up at five minutes apiece for the first five treatments and 2½ minutes each for the rest I logged 1½ hours sitting in that chair being bombarded.
On the whole I was handling the radiation therapy treatments well,. The doctors decided I could to have the bulk of my treatments as an outpatient. When Mom and Dad found out how long my radiation therapy would take they knew they couldn’t spend the next two months in a hotel in Toronto. They started to look for an alternative. One evening riding back to the hotel from Princess Margaret Mom asked the taxi driver if he knew of any places nearby. “There’s a new apartment hotel called the Town Inn at Church and Charles,” he said, “You can rent a small suite with a kitchenette by the week.” They checked it out and decided to take it. The suites were modest but affordable. I travelled from there each weekday for my treatments. Mom, Dad, Catharine and I spent Christmas and New Years there together with some friends from Toronto.
After my first few treatments a doctor informed that me that my hair would fall out in the area I was getting the radiation. I imagined myself going completely bald. How could face my friends with no hair? I didn’t like this at all but what could I do? After treatment number 15 my hair started to fall out. I wore a hair net at night. I could reach back to pluck the hairs out of my scalp without feeling a thing.
The skin became tender and crisp on my ears and especially on my ear lobes – like after a bad sun burn. They were cooking my ears but they had to pass the radiation through them to get at the tumour. My ears kept getting worse until the treatments finished. The skin healed over the next two weeks. I thought my hair would grow back but it never did.
Forty years later I still have a one inch wide band of baldness going across the back of my head from ear lobe to ear lobe. I keep it covered up by letting the hair above grow over the area. I’m careful to point this out every time I get a haircut with instructions to leave the hair longer there to keep that spot covered. Hair stylists are generally okay with this. Some have commented on it being an odd place to be bald.
“Yes, isn’t it?”
When I was in Princess Margaret Hospital I started to get headaches during the night. I walked out to the nurse’s station to tell them only to be given two aspirin and told to go back to sleep. One evening I discussed this with a nurse on duty. She realized I hadn’t had a bowel movement since the day before surgery and I was badly constipated. She ordered a Fleet enema for the next day. The enema cleared my rectum and the headaches stopped. Somehow during the month since I had neurosurgery nobody checked to see if I was having bowel movements. Since I didn’t feel the need to “go” I never thought about it. I had lost the ability to have a bowel movement. The surgery must have affected the nerves for that. This meant getting a lot of enemas to keep me “regular.” Most were administered by Mom. Four months after surgery my ability to have bowel movements was coming back – or at least the feeling to want to go. It was a lot of effort at first but by eight months after surgery, when I was 14, it was pretty much business as usual.
Dad had to work and Catharine had to go to school so just Mom and I stayed in Toronto at the Town Inn for the two months while I had the radiation therapy. Dad and Catharine visited a few times and our Toronto friends stopped by as well. Mom and I went for walks around the Town Inn. We got to know the area fairly well. Our walks often took us past Postal Station F. I remember the big grey squirrels scurrying about. They had to be at least three times the size of the small brown squirrels in Thunder Bay.
My last treatment was on January 6, 1973. In the two days until we caught a plane back to Thunder Bay we packed our things and said good-bye and thank you to our friends who had seen us through the last three months. As we got ready to leave the Town Inn for the airport I reached into the closet and pulled out my Team Canada autographed hockey stick. I grasped it firmly on the taxi ride to the airport, on the plane and on the drive home.
Joe, a family friend, picked us up at the airport in Thunder Bay to drive us to our home. Along the way I happily looked left and right to gaze at all the familiar buildings and streets. It seemed I hadn’t seen them for such a long time. As we turned a corner my heart jumped for joy when I first glimpsed the sight of our house.
“I’m home. I’m finally home.”
It was a sweet homecoming and a welcome chance to breathe a long sigh of relief. We had endured the three month ordeal in Toronto. As that ordeal ended another was soon to begin.