Sick Kids

Through Loss Is My Beginning.

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Mom often told me the story of how she met Dad.

“I met your father in the men’s washroom at Hillingdon,” Mom smiled and laughed as she relived the moment.

In the summer of 1953, Mom was assisting a male patient to the washroom one afternoon. She met a handsome young man, Peter Spare, the Assistant Clinical Chemist. As a nurse she was one of the few women permitted into the men’s washroom.

“He was surprised to see me,” Mom said.

A few days later when they crossed paths they smiled as they talked about their bathroom encounter. That started a two year courtship.

Once Mom and Dad got to know each other they found, despite their very different upbringings, they had many things in common. Both had grown up on a farm and hated the farming life. Each had chosen a profession in health care and had achieved their education through their own means, hard work and determination – and they both desired to leave the UK. When it came to getting an education and forging ahead in life Mom like Dad found her helping hand at the end of her own arm.

Dad owned a three-wheeled, two-seater, Bond Minicar convertible powered by a motorcycle engine. It was constantly breaking down so he kept a tool box in the back to change a spark plug or whatever needed fixing. Often it needed a push to start it. But Mom didn’t know how to drive. Dad would have to steer while Mom pushed. When the car started Mom jumped in and off they went. They made a good team.

“I swear I pushed that car everywhere we went,” Mom said.

September 3, 1955, Mom and Dad were married at St. Patrick‘s church in Northampton, England, and they spent their honeymoon at Shakespeare’s birthplace in Stratford on Avon. When they returned from their honeymoon Mom and Dad made their final preparations to set sail for their new life together in a new land. In early October they sailed to Canada. They docked in Montreal and rode the train to Sudbury, Ontario, with just $18.00 cash between them.

Soon after they arrived in Canada Mom and Dad tried to start a family. I was born four years later and they adopted Catharine three years after that. Mom and Dad were dedicated parents who raised Catharine and me in a loving and stable environment. They were always supportive to each other and were unwavering in their parental duties.

All through my grade school years we had family, neighbours and friends in and out of our home and guests over for dinner. For every occasion throughout the year we had people and parties at our home. My illness changed all that. From my neurosurgery at Sick Kids in Toronto until my recovery the house parties stopped. During those two years only a few friends came by. An elephant lived in our house and many people didn’t know what to say or do. Adults with healthy children were silently thankful they weren’t in Mom and Dad’s shoes.

The traumatic experience of my brain tumour had affected all of us. I was left with disabilities and the plight of adjusting to them. Mom and Dad had to recover from coping with the distress of watching me get sicker during 1973. They seriously wondered if I would live though it. Catharine quietly watched as the world focused on me. Being younger she weathered the storm better than any of us. When the two years of my recovery had passed, and I was getting out again, the house parties gradually started. Once more other people’s voices enriched our lives.

Mom and Dad continuously applauded my efforts to overcome my disabilities. They did anything and everything to forge a successful path in life for me. Mom never accepted what had happened to me. She had a mother’s guilt of thinking she could have done more for me. She saw the perfect little healthy boy that she had prayed so hard for become sick. Mom was thankful for me but felt cheated that she couldn’t bear more children. Also Mom didn’t become the woman of wealth and prominence she had dreamt about. Mom lived her days looking back to her troubled childhood and it influenced every decision she made. She worked hard to get out of her impoverished life and she sensed she was succeeding in her aims only to be thwarted by circumstances. She wondered when the cruelties of this world would let up on her. Mom felt as if life had been very unfair to her.

“Why do some people go through life with hardly any problems,” Mom said to me, “and others get so many?”

The culmination of all her worries sowed the seed of her depression that didn’t surface until the 1980s. The love that brought Mom and Dad together and bonded them through their life’s journey was always there. As Mom’s depression took root a wedge was driven between them.

Part of Mom’s depression stemmed from the fact that she had no siblings in Canada to support her. “If only Rita had lived she would have come with me,” Mom said to me with a mournful sigh. I recall how her spirits were lifted when she received a letter from one of her sisters. Mom yearned to return to Ireland but Dad had no desire to do so. Although she dearly loved her husband Mom very much resented his choice to stay in Canada. Mom and Dad remained together out of their commitment to each other and to Catharine and me.

Even after Mom’s depression started to take hold of her the get-togethers with friends continued. Not until 1985 did the house parities start to taper off. During the three years I was in London, Ontario, things really diminished. When I came back to Thunder Bay the house was much quieter and even general house maintenance had been left. It demonstrated to me how central I was to Mom and Dad’s lives. Without my presence they lost the focus of what had driven them forward together for many years. Mom and Dad lost each other in their efforts to build a life for me.

When we started Tara Scientific Laboratories my parents found a renewed energy in helping me build a future. Running Tara demanded a lot of our time and by and large took the place of our social lives. Not until the final three months when Mom and I were shutting Tara down did I truly notice just how quiet the house had become. Many of the family friends who were in and out of the house over the years had moved out of town, passed away, or just stopped coming – friends who were never replaced. Our home had become a lonely place.

Once Tara was finished and Dad’s affairs had been put in order, Mom began to lose her positive outlook. She sensed the emptiness of our house too and didn’t see how or have the energy to liven it up once again. Mom lost her focus of helping me build a life now that Tara was gone. She had seen me to my 40th year but she could find no more of herself to give. Mom died of a heart attack in her sleep June 10, 1999. I think her spirit drained away over the last three months of her life.

I laid Dad to rest and then Mom. On June 15, 1999, the day after I buried Mom, I filed Tara’s final taxes. Maybe it was meant to be that way. Mom and Dad steered the course of my life for its first 40 years. Tara Scientific Laboratories was the last part of it on which my parents had influence. When I laid Tara to rest I put aside my parents’ capacity to shape my life. Now navigating my way was solely up to me.

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Getting Back Out There.

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In January of 1975, when I was 15, I was back at Sick Kid’s to have my eyes straightened once more by the same surgeon who had operated on me when I was eight. This was minor compared to what I had just been through. I knew the surgeon, I knew the drill and I knew the hospital. I spent two nights in the hospital, one night in a downtown Toronto hotel and then home to Thunder Bay. Two weeks after surgery the stitches were out and I got back to my daily routine. With all the trials of surviving my brain tumour behind me I was confident my life could move forward.

Dad and I began building projects again. Dad introduced me to electronics. I soldered resistors, capacitors and transistors together by following schematic circuit diagrams with my trusty magnifying glass. Dad helped me by guiding my hand as I held the soldering iron until I could do it on my own. My most ambitious project was a radio. When it was assembled it wouldn’t work. After examining the schematic diagram I concluded that I hadn’t followed it properly. All the same I had fun piecing the radio together.

I got a rock tumbler and started polishing small bits of amethyst. Dad helped me glue the polished rocks onto jewelry mounts purchased from a craft store until I could do it competently for myself. I made pendants, bracelets and broaches and gave them away to Mom, her friends and the church bazaar to sell at their craft table.

I believe that challenging my eyes to focus on small rocks and electronic components helped to clear them. My eyes were like muscles that had been weakened by illness and needed strengthening. Once they were strong enough my eyesight became clear again. The dexterity needed to solder electronic components together and to make jewelry improved my co-ordination by making my fingers manipulate small objects.

By the time I finished homeschooling in 1976 the world was much clearer. I could see large objects in detail such as cars and people but reading remained a problem. Lines of 12 point serif text were still hard going – especially a full page of text. My eyes gave out toward the end of one page. They hurt and I had to stop to rest them.

I was probably physically well enough to attend high school by September of 1975. But the outside world had changed dramatically. Maybe the outside world seemed different because I had changed. I had spent two years inside the house. How would people accept me with my facial paralysis, poor balance, and the way I spoke? These questions swirled around in my head and made me anxious about the world out there that was so unfamiliar to me now – the world I wanted to re-enter – the world I yearned for but was fearful of. Home was what I knew and where I felt safe. Like a chick ready to hatch I pecked away at the inside of my shell of fear. Once I got out of my eggshell I liked being out as much as any teenager. The people who knew me were glad to see me back out in the world. With youth on my side and with the support of my family and friends I quickly adapted to the changes in my body, my life and how I had to interact with the world.

At age 15 I began to venture out into the public. People had a hard time understanding me. Their difficulty was due partly to me not moving my lips to pronounce words and not making facial expressions. As well my tongue was a half step slower and my articulation was poor. People would be confused. It sounded like I was talking to them but it didn’t look like it. Dad suggested that I had to animate myself by moving my head or hands while I spoke so people would know it was my voice they heard. It helped.

When I went to a coffee shop or restaurant I learned to point to whatever I wanted on the menu. When the server looked at what I pointed to, and wasn’t looking directly at me, I asked for what I wanted. This worked well. More often than not I was understood because he or she didn’t see me say it.

Another technique I learned to help people understand me was to put my hand in front of my mouth when I spoke as if I was scratching the bridge of my nose. My hand masked my mouth so they couldn’t see my lips. This was effective especially when pronouncing bilabial sounds like “b”, “m” and “p”.

People including me hear with their ears and listen with their eyes. That is we lip read. When I speak, since I don’t move my lips, it doesn’t look like what I am saying. Some people are not fazed at all. Others have difficulty with my “accent” initially and I understand this. Still there are those people who are completely floored. I see a wall go up, a glaze cover their eyes and an aghast expression that says, “I can’t understand this person.” These people I find very frustrating. I’ve been given a pad and pencil more than once to write down what I said. Communication on the phone has always been easier because people can’t see me and must hear and listen with their ears.

One day in May of 1975, I was walking through Grandview Mall, a small shopping mall near where I lived. In passing I met Mrs. D who was a friend of Mom’s. We said hello and I continued on my way. She was speaking to Mom a few days later and said, “Brian gave me the nicest smile.” The fact is that I couldn’t have physically smile at her but I left her with that impression. I took note of that and began to watch how people are left with an impression.

Something else that affected my interactions with people was that I didn’t smile when I laughed. I learned to wait a second. When they weren’t looking straight at me I laughed at what they said. This largely solved the problem. Since they weren’t looking directly at me when I laughed in their minds I smiled.

My whole life has been one of adapting to ways of doing things varied from the “usual” way people do them. Sometimes I had to cajole people into letting me try. More often than not they found I could do it. My methods were at times unorthodox but I got there. I set a ground rule for myself, which was, whatever I start I finish. Anyone who knows me can tell you that I don’t damned well quit.

I found that, as a group, women are the most impressionable people who use a lot of body language. This was most apparent when I was at a party and watched two women have a conversation using only body language. No words were spoken. “Cool,” I thought. From then on I watched how women express themselves using body language. I adapted it to help me convey my thoughts when I speak. It works well and it’s not surprising that women are generally the first to pick up on it. Be advised ladies I’m looking at more than your legs.

The Time To Act Was Now!

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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!

Then My Game Began – First Period – The Investigation

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16 Family portrait 1969My 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?