Month: March 2015
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.
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!
My health steadily worsened and my parents’ anxiety increased over the next eight months as they took me to see one doctor after another in Thunder Bay. The doctors referred me to the Hospital for Sick Children in Toronto. By October of 1972, one month after the Canada versus Soviet Union eight game hockey series – the 1972 Summit Series – I was back at Sick Kids. My friends and I talked about that series all summer. It was a good distraction for me from the worry of going back to see the doctors in Toronto.
Little was known about the Soviets. The cold war between the East and West was at its height and much secrecy existed between the two sides. At the time Canada playing hockey with the Soviets was a novelty to many Canadians. Everyone learned about the Soviet Union through the games. The whole series, especially the games in the USSR, was like a voyage into the unknown and the mystique sparked intrigue and national pride.
The first four games were in Canada and we were all glued to the TV each evening for every game. The Soviets won two and tied one. The remaining four games were played in Moscow. Because of the time difference they were telecast live in the afternoon. This meant we were at school and not in front of a TV. The games were also broadcast live on radio. One of the boys had a transistor radio in his pocket with an ear phone wire running up his sleeve. The play by play went from student to student up and down the rows for all the games. Not one teacher noticed.
On the afternoon of September 28th, the day of the eighth game, class ended just as the final minutes of the third period were ticking down. The score was tied. There was no overtime. Each team had the same number of wins. If this game ended in a tie the Soviets would take the series because they had scored more goals overall. Canada had to win.
I had just gone to my locker and was heading out the door when a crowd of kids surrounding the bicycle rack suddenly threw their arms in the air shouting, “Henderson scored!” Paul Henderson had scored the go-ahead goal with 34 seconds left in the final minute of play. I ran to the bicycle rack where we huddled around a small transistor radio as we held our breath listening to Foster Hewitt’s play by play of the final seconds. Canada won 6-5 and I wore a smile all the way home.
Then my game began:
Brian vs. Tumour
First Period. The Investigation. One month later I was still smiling from the historic goal when Mom, Dad, Catharine and I arrived in Toronto. I saw the doctors the next day who questioned me about my symptoms and did all the initial tests such as listen to my chest with a stethoscope. They wanted to run more tests on me as an inpatient. I was admitted to Sick Kids the following Wednesday.
After seeing the doctors we went to Woodbine race track with Pat, a family friend. Catharine and I called him Uncle Pat. Pat loved horses and everything to do with them. He spent most of his leisure time and money at Woodbine. There he met Frank “King” Clancy who was vice president of the Toronto Maple Leafs and former Leafs defenseman. Pat introduced us to the King and Catharine and I got his autograph. King Clancy turned to me and said, “Come to the Gardens on Saturday and I’ll give you a Team Canada autographed hockey stick.” I nearly fell over. I couldn’t wait. It’s all I thought about for two days.
Saturday morning came and Dad, Pat and I went to Maple Leaf Gardens. Dad said to the doorman, “We’re here to see Mr. Clancy.” Hearing this the doorman perked up and with a smile pointed out the way to where the King had gone. Any friend of the King’s was a friend of his. When we got to where the doorman said to go Dad was told, “Oh, he was just here, try …” This happened a few more times and each inquiry about Mr. Clancy brought a smile to that person’s face. He was obviously very well liked. Our quest to find King Clancy took us to the top of Maple Leaf Gardens where we knocked on the King’s office door. There he was at his desk. He invited us in and we talked for a bit. Then he asked, “Do you know what C.C.C.P. stands for?”
Hey, I knew everything a 13 year old could possibly know about that series. I piped up, “That’s Russian for U.S.S.R.”
He said, “Right, I never knew that.”
I really thought that King Clancy had gone to Moscow and back with the team not knowing what C.C.C.P. on the Soviet jerseys stood for.
The King took us downstairs around to the back of the Gardens where his car was parked. He opened the trunk and in it was a pile of autographed Team Canada hockey sticks. “Which one do you want?” he asked.
The choice was easy. “Henderson,” I said.
King Clancy rummaged through the pile and said, “Ah, here we are, Henderson,” and handed me the stick.
I marvelled at that hockey stick. It was obvious Paul Henderson had used it. There was a chip off the tip of the blade and the tape around it was worn. I read each autograph carefully – Ivan Cournoyer, Ken Dryden, Phil Esposito … Paul Henderson had signed his stick too. I knew the name of every player on that team and the whole team had signed it. Many of my hockey idols in the NHL were on team Canada. Now I had a hockey stick with all their autographs on it that belonged to Paul Henderson. This was the ultimate hockey prize. Beaming with excitement I proudly showed off my stick to Dad and Pat.
As we walked back into the Gardens King Clancy asked me, “What hand shot are you?”
“Left,” I replied.
“That’s a right-handed stick. You can’t play hockey with that.”
Play hockey with it?! I had no intention of playing hockey with this stick.
Then King Clancy said, “Come back next week and I’ll give you a left-handed stick.”
Wow! I never made it back to Maple Leaf Gardens the following Saturday and I didn’t get a second autographed hockey stick. But I treasure the one I have. I met King Clancy a few more times in the following years and always found him very pleasant and personable. Although he was small in stature compared to today’s NHLers he was big in heart.
The following Monday I saw my first NHL game. Mom, Dad, Catharine and I sat at centre ice ten rows back. I had my first thrill of seeing in person the players I watched on Hockey Night in Canada every Saturday. I felt the coolness off the ice, heard the slap of stick on puck and the players calling to each other. It was an experience wholly different in sound and atmosphere than from watching it on TV.
The Pittsburgh Penguins were in town. That night I discovered a phenomenon named Eddie Shack who played for the Penguins. The Toronto fans cheered for the Leafs as they headed for the Pittsburgh net and I cheered with them. Then I watched in disbelief as those same fans cheered Eddie on when he had the puck charging, like a freight train, for the Toronto goal. Never would I have thought I’d see the Leafs fans cheering for a player on the visiting team. I saw why someone coined the phrase “Clear the track here comes Shack.”
The Leafs won 4-3.
Next season Eddie Shack was traded to Toronto I think just so the Leafs fans could cheer him on as he charged toward the visiting team’s net. Eddie always looked like he was out on the ice having fun. He wore a big smile as he skated around the rink more like a big kid than a serious hockey player. He put a smile on my face as I watched. He said the fans came to be entertained. For that he earned the nick name “The Entertainer,” and he was as entertaining as he was colourful. The Leafs fans loved to see him play including me. I tuned into Hockey Night in Canada each Saturday as much to see Eddie Shack as to watch the Leafs play.
On Wednesday, two days after seeing my first NHL game, I was admitted to the Hospital for Sick Children to investigate the cause of my worsening symptoms. Did I have a brain tumour after all?
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.
It was a two day train trip from Sudbury to Fort William. I remember the gentle sway of the carriage and the clickity clack of the wheels. Most of all I recall sitting aloft seemingly perched on top of the train in the glassed double-decker observation car. I spent most of the trip in my “nest” watching the countryside unfold before me on my adventure northwest. Even then I knew that one day I would ride this train again – at least for nostalgia’s sake.
We arrived at the Syndicate Avenue train station in Fort William on a mid-April evening. George, a man who would be Dad’s colleague for the next 26 years, met us. He brought us to a cozy, small motel called The Uptown. It wasn’t far from the station and just down the street from McKellar Hospital. We stayed there for a few nights. Then we moved to a motel on the Kingsway for a week. We finally rented a house for two years on Dorothy Street in the hilly Port Arthur side of Thunder Bay. The house was within walking distance to St. Bernard’s School where Catharine and I attended grade school.
We went for many family walks around Centennial and Chippewa Parks, visit friends and play board games like Michigan rummy. Mom and Dad made learning arithmetic fun by playing Cribbage. 15-2, 15-4, 15-6 and a pair is 8.
One family ritual I looked forward to each week was Sunday morning breakfast. After church Dad cooked bacon and eggs while Catharine and I set the dining room table with the good china and silverware. Then we ate our meal with fresh Irish soda bread that Mom had baked on Saturday. We only ate at the dining room table on special occasions. Eating Sunday breakfast in the dining room made this a special event I enjoyed immensely.
One Saturday afternoon in July, 1966, a year after moving to Thunder Bay, when I was seven, Mom noticed I was closing my left eye to catch a ball. She asked me why.
“So I just see one,” I replied.
She examined at me closely and saw my left eye had turned in slightly which gave me double vision. I adapted by closing my left eye so I would see only one image. My friends thought it was really cool that I had double vision. Some of them asked, “How come you can see two of everything?” They could only see one.
That August my parents took me to see an eye surgeon in Thunder Bay. During the month since Mom noticed my left eye had turned in to when I saw the eye surgeon, both eyes had turned in making me cross-eyed. The eye surgeon concluded that the problem had little to do with my vision. He said my eyes turned in because the outer lateral eye muscles were paralyzed. He suspected a brain tumour and referred me to the Hospital for Sick Children in Toronto for confirmation.
Mom and Dad were deeply troubled by this diagnosis. They downplayed the seriousness of it to me. My parents enthusiastically told me the eye surgeon wanted me to see a doctor in Toronto. They knew I liked to go places so they pretended to be excited that we were going on a trip. I was excited too.
My parents brought me to Sick Kids in Toronto in September, 1966, where received many pokes and prods from doctors. The one test I remember was the air and dye studies. The doctors put me under a general anaesthetic. Then they injected air and dye into my spinal column and moved my head around while they made their observations. During the procedure I stopped breathing and they had to resuscitate me. This meant they were unable to complete the test which left the results inconclusive. Even with incomplete results the doctors concluded that they could find no evidence of a brain tumour and could offer no explanation as to why I was cross-eyed. When I woke up my head was like a helium balloon bobbing up and down tethered to a string. I felt totally disconnected for a week.
In May of 1967, we moved into a new house that Mom and Dad built on Whalen Street. I turned eight in June. In July we vacationed in Montreal with Grandma, Dad’s mother, who came from England to visit. After we spendt a great time at Expo ’67 in Montreal, during a stopover in Toronto on the way home, my parents dropped a bomb shell. Mom and I would be staying behind while I had eye surgery to correct my double vision. I was upset they hadn’t told me sooner. Mom and Dad didn’t want the thought of the surgery to spoil my trip.
The next day I was admitted to Sick Kids and had eye surgery the day after. The eye surgeon shortened the muscles to pull my eyes straight. I have not been able to move my eyes from side to side since. I spent three more nights in hospital, two nights with Mom at a hotel in Toronto and then we flew back to Thunder Bay. I was home, seeing only one image again and I was glad it was over. I was back to my regular self playing like all the other kids. For the next three years I had no health problems.
In July of 1962, when I was three, Mom, Dad and I flew to Rome. On the flight over, while I looked at the clouds below us, I kept asking to go out and play in the snow. We went to the Vatican where all the cardinals were dressed in red robes. I thought they were all Santa Clauses. From Italy Mom and Dad took me to Ireland, England and France to visit family and the land they hadn’t touched for seven years. It was also their first chance to proudly show me off. I don’t recall much of meeting my relatives. What I do remember is being fussed over by my aunts who had anticipated meeting me for three years. After four weeks overseas we returned to Sudbury.
In August of 1963, I got my wish for a bigger family. Mom and Dad adopted Catharine when she was nine months old. Catharine was born on November 11, 1962 at the Memorial Hospital in Sudbury, Ontario, and put up for adoption from birth by an unwed mother – a common practice back then. She was a ward of the Children’s Aid Society. I vaguely remember the day two women from the CAS brought Catharine to us. With curiosity I watched this little baby girl lying in her pram as Mom and Dad spoke to the women. When they left Mom, Dad and I looked the baby lying in her pram. She was watching us.
“Is she staying tonight?”
“Yes Brian. She is your baby sister, Catharine,” Mom answered.
My sister! I smiled as my heart leapt with joy. Now I was like my friends.
Mom picked Catharine up and held her close to me. Wide-eyed with wonder I reached out as my hands clasped hers. I loved her immediately.
I watched Mom and Dad bathe, change, feed and comfort Catharine. Dad was unusual for a man from his era in that he didn’t mind giving his children baths or changing diapers. I wanted to help as much as I could. It took a few weeks for Catharine to settle into her new life, but she adjusted, and we became a family of four.
Until that time I had imaginary friends. One of them was Fred Flintstone whom I played with often. My imaginary friends were very real to me. One day Dad came home from work and sat down on the sofa. Straight away I cried out, “You sat on Fred Flintstone.” Dad quickly stood up apologizing to me and then turned to apologise to an invisible but squashed Fred Flintstone. The day Catharine arrived my imaginary friends disappeared. I had a sister now who filled up my playtime. I called her Kate. I can’t remember calling her anything else. That is except when we were mad at each other and then she was Catharine. But these times were rare.
Catharine and I enjoyed each other’s company and companionship. We shared many secrets and totally trusted each other. We had a strong bond between us.
Mom, Dad, Catharine and I would often go for walks by Lake Ramsey which is surrounded by the city of Sudbury. I climbed up the side of the life guard’s chair at the public beach as Dad watched. It was a tall climb up to the top for me but eye level for Dad. When I got there I proudly surveyed the houses and hills across the lake. Then Dad lifted me off the chair and put me down on the ground where I would turn around and climb up again.
When the four of us went swimming at Lake Ramsay we put our swim wear on under our clothes before we left home. We dropped our street clothes at the beach and be ready to go into the water. One time I ran off toward the deep water where the bigger boys were swimming. Dad had just dropped his pants when he saw me run off. He started to run after me only to be tripped by the shorts around his ankles. In the heart-stopping moments when Dad struggled to get the shorts off his ankles and scramble to his feet seconds turned to minutes. “Do you know how long it takes to get your shorts off?” he said reliving the moment. Dad had almost caught up with me as I jumped into the water. He leaped in after me and grabbed hold of me just as I was bobbing back to the surface spluttering and laughing. I was having a great time. Dad had his heart in his throat as did Mom who watched all of this from where she and Catharine stood.
Dad mainly read bedtime stories to Catharine and me. Dad would ask, “What story do you want me to read tonight?”
“‘Twas The Night Before Christmas.” It was my bedtime story of choice from Halloween until Easter. Even though I didn’t know what an elf was or had never seen a mouse in our house, that timeless rhyme would cast its spell every night.
The year Debbie, Jill and I turned five, our mothers took us to register for Kindergarten in the fall of 1964. Debbie and I would go to St. Bernadette’s and Jill to another school. During the summer tragedy would strike. Debbie and her family were out boating on Lake Wanapitei with another family when a storm blew up. The other family turned around making it safely to shore. Debbie and her family kept going. Their boat became swamped and all were drowned. Debbie and her father’s bodies were never recovered. As a five year old I couldn’t understand the tragic loss of life. All I knew was that Debbie was gone and her house was strangely quiet.
“She’s gone to Heaven, Brian,” Mom said softly.
I had no idea where Heaven was but I was comforted to know that Debbie was some place. I thought she would come back to see me.
When September came Mom saw me off on the school bus alone. As I climbed aboard I turned and cheerfully said, “Bye Mom.” We waved to each other through the window as the bus pulled away. What I remember most about school are the bus rides, the hallway skylights and the large rooms with all the desks which made the school building look different from any other I had seen. All the teachers were nuns who wore full habits. Three months after I started Kindergarten Dad accepted a job as the Clinical Chemist at McKellar General Hospital in Fort William (now Thunder Bay) in Northwestern Ontario. We had to move.
Mom and Dad held a going-away party for me one stormy winter evening in February before we left Sudbury. Naturally I invited my whole Kindergarten class plus all my friends. Nearly everybody came. It was hotdogs for everyone topped with the usual ketchup, mustard and relish. This was a time when all parties were special occasions. The girls wore dresses and the boys wore dress shirts and pants. Along with everyone dressing up they each had a present for me which included a kiss on the lips from Jill.
When the party was over Dad had the task of driving some of the kids home in his little VW Beatle at night in a snow storm. I had a wonderful time being the centre of attention. Little did I realize that along with the happy excitement I was saying good-bye.
In April, 1965, the morning of moving day came with a late winter snow storm. I remember the movers having to shovel snow off the floor and out the kitchen door as they loaded the house contents into the moving van. The house furnishings would follow us to Fort William. The four of us had an hour to look around the empty house before Jim, a family friend, arrived to drive us to the train station. As we got to his car in the driveway the neighbours from across the street and next door were outside to see us go. In the five years we were on Dublin Street we had made some close friends. We waved back as we drove off. At the train station Jim wished us well as we said good-bye and thanked him. “We’ll be in touch,” we said as the four of us boarded the Canadian Pacific Railway’s passenger train, The Canadian. As the train pulled away from the station I was full of excitement set to embark on my new adventure. The next chapter in my life was beginning. I could not have imagined how my life was about to change.
I glanced into Mom’s bedroom from the hallway as the afternoon sun streamed through the window. The light beckoned me to go in.
“Mom has been dead three months,” I said to myself. “It’s time. I have to do this.”
I took a deep breath to summon my courage and entered her room. All that remained in Mom’s bedroom was the furniture. I had been through her closets filled with neatly hung dresses. They reminded me of so many celebrations and family occasions. I had emptied her bedside table and dresser drawers. Only one thing remained – Mom’s jewelry box atop her dresser. Mom kept anything personal to herself in her jewelry box. I had avoided looking in it when I sorted through her belongings for that reason. I felt I would have intruded on her privacy.
Mom’s jewelry box was now covered with a sifting of dust. In the back of my mind I was apologizing to her for the intrusion as I lifted the hinged lid to reveal two trays of jewelry. I found her favourite pearls, the diamond earrings Dad gave her for their 25th wedding anniversary and the flower broach Catharine and I gave her for Mother’s Day.
I pulled open the bottom drawer. In it was a bulging envelope which contained a letter Mom had written. It was dated six months before her death. As I unfolded the letter I sat down on the side of her bed to read it.
Dear Fr. Matthew
I was so pleased to read in the November Catholic Register of your healing prayers and those who have benefitted from them. I regret not hearing of you before or I would have attended your healing service.
Father, may I impose on you to pray for me and my son. I have been suffering from anxiety and depression for eighteen years. It is really wearing me down. Like the woman who said to Jesus I feel if I could touch the hem of your garment, I could be cured. Father, will you please pray for me for deliverance from this debilitating disorder.
My son Brian, who is now 39, had a brain tumour when he was a child, but not diagnosed until he had surgery six years later. It left him with bi-facial paralysis and medication prevented him from growing.
He is extremely bright. Because of his eye problems he was unable to go to school. My husband and I taught him at home. He made it part time through university right to his PhD. I read most of his material to him. He has had about 16 surgeries, some as long as 6-8 hours. Unfortunately, nobody will hire him because of his facial paralysis. We started him in business, but the “big guy” undersold him. My husband died on Sept. 1/98. I don’t have the money to keep him. Would you please pray that God will intervene and somebody will hire him.
I feel really sorry about your illness. I know the patience you need to have dialysis on top of your cardiac problems. I pray for you. I hope they are heard. Father, please intervene for me.
May God bless you.
When she was young Mom had a broad smile that lit up her face. She had a hearty laugh and her eyes sparkled. As the years passed her brilliance faded as depression took hold of her. I didn’t fully realize how deep it was until I read this letter.
“Could I have done more for her?”
Mom, as well as Dad, took pride in my achievements and championed all my ambitions. I was fortunate to have such dedicated, loving parents who were always there for me. A deep forlornness welled up within me as I fathomed, all at once, the events over 40 years. My face could not express the grief in my heart, but a voice in my soul cried out for the life that had come to a screeching halt. Mom was gone and Dad had passed away just nine months before. My life as I knew it was about to change in a very big way.
My parents told me the story of my birth many times. I was conceived after five miscarriages and they saw my birth as a miracle. There were so many girls in both families Mom and Dad were sure I’d be a girl.
Dad asked, “How’s Cathy today?” They chose the name Cathy for their baby girl. When the day arrived – surprise!
“We have a beautiful baby boy,” Mom excitedly said to Dad, “He’s perfect. What should we name him?”
My parents couldn’t name me Cathy so they settled on Brian after one of Mom’s uncles. They happily counted my fingers and toes.
I entered the world 9:15 AM June 3, 1959 at the Memorial Hospital in Sudbury, Ontario, weighing in at 7 lbs 1 ounce. When they brought me home from the hospital Dad carried me in from the car very slowly and carefully as if I was a very fragile glass treasure. Dad was a proud father. He sat me on his shoulders to walk places while I grabbed a tuft of his hair in each hand like reigns on a horse. Mom finally had to tell him, 3“Brian has to walk too.” Dad said the first few years after I was born were some of the happiest of his life.
My first childhood memories are of Sudbury in our split level house on Dublin Street. I was a happy, active, healthy boy interested in everything. My natural curiosity led me on a journey of discovery every day. Needless to say my inquiring mind kept me very busy. Each new found treasure brought a rush of adrenaline and excitement that inspired me onward. Once a week Mom put my little wooden chair by the front window. I stood on it to watch the garbage men collect the trash door to door down one side of the street and up the other. I imagined the many treasures I could find in all that lovely garbage. I thought garbage men were the greatest. Mom found ten minutes of rest.
I was honest too. If Mom or Dad asked me, “Brian did you do …?” and I didn’t want to admit to it I wouldn’t lie. I said, “I wish you wouldn’t ask me that question.” That was enough of an admission of guilt for them.
I also took things literally. I was taught to say please and thank you. When I thanked somebody and that person responded, “You’re welcome.” I replied, “No I’m not I’m Brian.” One Sunday as the priest came out to say mass I called out, “Fr. Ted has a new haircut.” My comment prompted laughter from the congregation and Fr. Ted.
Being a pleasant and sociable child I soon attracted the attention of all the young girls in the neighbourhood who would stop to play with me. Two little girls my age, Debbie and Jill, really liked me. Debbie lived two doors away and guarded me jealously from any other girl. Jill, who lived five doors down, was undaunted by Debbie’s protective efforts and continued to seek my friendship. I spent a lot of time playing at both their homes and they at mine.
Debbie had two older brothers and a large extended family with lots of aunts and uncles. Of all Debbie’s relatives her Uncle Cliff was her favourite. He was always around the house horsing around with Debbie, her brothers and with me. I called him Uncle Cliff too. Jill had a baby sister. I wanted an uncle and a brother or sister like Debbie and Jill.
After Sunday mass Mom, Dad and I would go to a Dairy Queen where I ordered a black ice cream. The man who served us each week knew I wanted chocolate. He greeted me with my favourite treat and a big smile. I named him Uncle Joe. It wasn’t his real name but he was tickled and quite proud to be my Uncle Joe. I had two uncles now but I still wanted a sibling.
This is my story of how I overcame adversity and found my new life.
Read my memoir from beginning to end in this blog’s memoir category.
I so enjoy the weekly excerpts Brian. Your writing style is smooth and and easy to read. Thank you for sharing. – Judy Lepinsky McGee
Brian you have a real gift. Your words move me. From the first time we met I knew there was more to you than meets the eye! I wish I could have met your father, he sounds like the Dad I deamt of having. – Shawn Maroney, Boss Entertainment
You write with such honesty Brian, I felt like I was there. – Judy Lepinsky McGee
My friend Brian Spare is an amazing writer! His words always move me and his journey in life has been about love and strength. I am so proud to call him my friend. – Shawn Maroney, Boss Entertainment
Your life and all its challenges are an inspiration to all your friends – Earl Smith
Brian, I wait with anticipation every week to read your latest installments – Alan Wade
You have done an amazing job of life Brian. You are truly an inspiration and thank you for sharing. – Judy Lepinsky McGee