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!
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.