smile

Be the reason

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Let my soul smile

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Let my soul smile through my heart and my heart smile through my eyes that I might scatter rich smiles in sad hearts.

Paramahandsa Yogananda

The New Brian

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It was then that the weight of depression lifted from my shoulders. I found my self-confidence and strength-of-will once more knowing I have the capacity within me to take on whatever may come my way. Hugh told me after I had come out of my depression that he never thought I was depressed.

“What was I then?” I asked Hugh. I’d been struggling against something for the past ten years – this monkey on my back or whatever it was.

He looked at me and said, “I saw someone dejected and demoralized.”

I had searched for a decade trying to find what I could never have found. I was increasingly frustrated by my fruitless trek and my body’s failings that thwarted my efforts to make a life for myself. I became more dispirited and disheartened as time went by. All this I saw as depression and the resulting insecurity as anxiety.

But never again!

I am now Brian in my own right. I live life as my own person. I am able to meet whatever life has in store.

As the veil of my depression started to lift I found the inspiration to follow my dream to do Voice Over (VO). I had wanted to give voice to animated characters since I was a teenager for two reasons. First, it would be a really cool thing to do. Second, because of my facial paralysis I couldn’t make facial expressions such as frown, raise my eyebrows or give a big, wide smile – but the characters I gave voice to could.

Just as for teaching, giving a workshop and working in a medical lab, there were people who told me, “Brian, you can’t do Voice Over.” Some people told me this out of genuine concern that I was destined for certain failure and didn’t want to see me get hurt. I appreciated their concern but as I listened in my mind I said, “Oh please save it.” Then there were people who told me I couldn’t do VO just for their own satisfaction of telling me so. For these people my sentiment was, “Take a hike!” My reply to everyone was, “I’m working on it.”

In April of 2010 I joined Voices.com, a Voice Over marketplace, and started receiving their emails, newsletters and job notices. That September I went to the Voices of Vision event in Toronto where I got a good feeling for the VO industry that I couldn’t find in Thunder Bay. At Voices of Vision I met Pat who gave the first workshop. He emailed me two weeks later inviting me down to a Voice Over event in October at his studio in West Hollywood. “Awesome, I can’t pass this up.” I did something that was totally out of character for me. I jumped on a plane for LA with no idea how I was going to pay for it. I was nervous. At Pat’s VO event I got two turns to stand in a recording booth in front of a microphone and read a script. I know I can trust Pat’s word when he said I was fine. When I came back to Thunder Bay from Pat’s VO event I felt I needed to strengthen my vocal skills. I saw Mona, a speech pathologist, monthly for a year and a half. She had done some VO herself so she knew what I wanted to do with my voice. Mona was very creative and helpful. We improved my voice as best we could given my impediments. I gained more confidence in speaking. Then I took voice lessons over Skype for a year from a woman named Sunday, a voice coach in Toronto. With her guidance I focused on how I can best employ my vocal skills.

When I decided to do VO I joined Toastmasters. I wanted to improve my public speaking and interpretive reading skills. I belong to two Toastmasters clubs in Thunder Bay, compete in speech competitions and have earned my Advanced Communicator – Bronze and Competent Leader standings. Toastmasters taught me a lot about the craft of speaking. My confidence in public speaking and reading aloud has grown tremendously. Best of all I enjoy it.

Like Mom and Dad I was an active member of Corpus Christi. When I moved into my condo I involved myself in all the church functions at St. Agnes to forge an identity of my own. After four years I became discontented with the church services and the whole church scene. I couldn’t put my finger on why but it all started to feel hollow. I could experience the building and the people but no spiritual connection. I realized I was trying to live my mother’s relationship with Catholicism. I had to find my own spirituality. I stopped going to church and I didn’t miss it.

I lived in spiritual limbo. No longer did I have a spiritual basis in church and I didn’t know where else to look. Counselling for my depression revealed the wholeness within me. My ascent from the depths of depression began when I discovered that the light of my spirit and strength shines outward from my heart and soul.

Since then my spirituality grew beyond any one set of beliefs. No longer could I adhere to the teachings and edicts of some external church telling me what my beliefs were. I found spirituality to be much more. Now my spirituality comes from a variety of sources and always shines out from within me. I will never knock organized religion. It is a source of spirit and strength for many people as it once was for me.

 

I met my health challenges of facial paralysis, speech impediment, poor balance, hearing loss, obesity and depression. I surrounded myself with people who could help me with my disabilities and forge ahead with life. When I saw how technology could help me I embraced it. I now know the joy of expanding my creative mind: Interior Design, Architectural Technology, Copywriting, Artist, Writer, Voice Actor, Toastmaster and … There are many more things I want to learn and do. These are my dreams. Anyone who looks with an open mind at all the things out there to do will find the opportunities are endless. I’ve gained confidence travelling by myself to reintroduce “Brian” to my family and preserve the family history. Moving in with Catharine and her children enhanced my family life tremendously. I have found fulfillment in writing and speaking. My new spirituality has given me a sense of inner peace and joy. Despite all I that have been through I am living my dreams.

Dad aptly chose The Old Man and the Sea to read to me in the ICU after my neurosurgery at Sick Kids in 1972. He chose the story of a man who kept his courage in the face of defeat who won a personal triumph from loss that, for me, proved to be prophetic. It would be the story of my life.

In my world there are no final frontiers. There are only new frontiers to be discovered and explored. My life is my continuing mission. What else is in store for me? What new adventure awaits? Whatever it is I will face it with a smile!

 

 

A warm smile

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Koala

A warm smile is the universal language of kindness.

William Arthur Ward

A warm smile

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A warm smile is the universal language of kindness. - William Arthur Ward

My Smile!

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During the time of Dad’s struggle with cancer Mom found an article in the newspaper about a new surgery for people with facial paralysis called Smile-Surgery. It was pioneered by two plastic surgeons in Toronto. I saw the surgeons in March, 1977, to find that I was a good candidate for this procedure. After the surgery I would be able to move the corners of my mouth outward and up to smile.

Smile-Surgery: One end of the gracilis muscle is attached to the chin and the other end to the cheek. The blood supply and nerve are connected to the jaw muscle. After 12 weeks the surgery heals enough for the “smile muscle” to start working. It contracts when the jaw muscle is tensed causing the corner of the mouth to move outward and up to smile.

“Is this the answer?” I wondered, “Would I finally have what I had dreamt of for so long?  Would I get my smile back?” I was afraid to hope. I didn’t want to be disappointed again and yet my intuition told me to have the surgery. I thought about it for months.

In October of 1997, I had Smile-Surgery on the right side of my face at the Toronto Western Hospital while Dad and Jeanne ran Tara.

The Smile-Surgery involved taking some gracilis muscle from my inner thigh and transplanting it into my face (right thigh for the right side of the face and left thigh for the left side).

The lack of a smile wasn’t my only problem. Since I didn’t have cheek muscles to support my lower eyelids they sagged. During this Smile-Surgery the surgeons made a sling for each lower eye lid from a tendon out of my left wrist to hold them up.

When I woke up after surgery the incision on my face went from my right temple, down past my ear, around the corner of my jaw and along it to my chin. I had an incision along the inside of my right thigh from my knee to my groin with drains sticking out. I had swollen, bloodshot eyes I couldn’t focus. They had taken a tendon out of my left wrist and there was an IV in my right hand. I was sore all over and all I could do was lie on my back and stare at the ceiling. Man was I ever feeling sorry for myself.

“Brian,” I said, “what on Earth were you thinking? You didn’t have to do this.” Wah wah wah.

Two days later I wasn’t as sore. I could focus my eyes again and I was glad it was over. Four days after surgery the drains came out and I could get up. Three more days in Toronto and I was back in Thunder Bay.

It took two weeks for the swelling in my face to go down. The surgeons gave me step-by-step instructions on how to strengthen my new muscle. I stood in front my bedroom mirror daily to practice twitching it by tensing my jaw muscles. There was no movement at all at first. The right side of my face looked to be more alive but, try as I might, the corner of my mouth wouldn’t budge. I was disheartened but I reminded myself that the surgeons had told me that the muscle needed time to heal before it would work. Of course I wanted the smile muscle to work right away. I kept practicing. Twelve weeks after surgery I was sure I could feel a tug in the corner of my mouth. It was also time for Smile-Surgery on the left side. In early January, 1998, I was back at Toronto Western Hospital.

Now I practiced twitching both corners of my mouth. To the surgeons practicing twitching the smile muscles every day was very serious business. I was like a kid with a new toy. Each day I stood in front of my bedroom mirror to practice twitching my smile muscles. At first I watched the corners of my mouth move slightly. The twitches got broader as the smile muscles became stronger. The joy in my heart grew and grew as I witnessed my motionless, expressionless face come to life. For the first time in 25 years I had movement in my face. I had my smile! It wasn’t the big, wide smile I would have liked but it was bigger than Mona Lisa’s.

“Why not have some fun with this too?” I thought. I discovered that, along with regaining my smile, I could make sounds again that I hadn’t made since I was a kid such as blow raspberries. Awesome!

The surgeons brought each smile muscle around under my lower lip as well. To have working muscles support my lower lip again proved to be a permanent solution to the problem of it curling down.

Someday I’ll Get My Smile Back

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In the mid 1970s biofeedback captured the public’s interest and became my hope to overcome my facial paralysis. I dreamt of making facial expressions again and most of all to be able to smile. A doctor in Los Angeles was well known for his expertise with this technique. In late May of 1975, Mom, Dad, Catharine and I were en route to California. We stayed at a hacienda-style hotel called Griswold’s in Claremont, a suburb of LA, where the doctor had his practice. It was a two storey building and the elevator was outside. The vending machine beside the elevator sold Canada Dry soft drinks. I had never seen a vending machine selling Canada Dry soft drinks in Canada.

 

Biofeedback: A training technique whereby an electromyograph is used to measure electrical impulses produced by muscle movement. The impulses are displayed on a screen to the person being monitored in order to assist that individual to improve muscle function.

 

At his office the California doctor stuck three electrode needles in each side of my face. Each needle hurt like sticking an IV needle in my hand. My face felt like a pin cushion. The electrodes were wired to an electromyograph to measure the electrical impulses produced by muscle movement in my face. My facial muscles were paralyzed so they didn’t produce electrical impulses. Since they didn’t produce electrical impulses biofeedback wouldn’t work for me. After watching the screen while adjusting the electrodes the doctor decided he couldn’t do anything for me. I was disappointed. I had imagined myself with a big smile again and placed all my hope in this doctor being able to help me.

Despite the disappointment we spent some tourist time there. We visited Disneyland for a day and toured Universal Studios the next. It was really cool to see how Hollywood shot movie scenes and made things appear a certain way for the camera. There were no sides on the tour bus. Every now and then a man dressed as Frankenstein suddenly poked his head into the bus to give us a scare. He got a lot of gasps followed by laughs and I laughed with them. That evening we drove around Rodeo Drive to find the homes of the movie stars. Next day was the long flight home.

I turned 16 in June of 1975. Like most 16-year-olds I wanted to get my driver’s licence and I vowed to get it before I turned 17. I passed the application for my learner’s permit. Now I could practice driving with a licensed driver with me, usually Mom or Dad, and take driving lessons. I took lessons with two driving schools and got a lot of practice driving my parents around town. When the instructor thought I was ready we booked a driving test. After a third test I got my licence in May of 1976 one week before I turned 17.

Mom was waiting for me when I got back with the good news. She gave me a big hug and disappeared for a moment while I sat down relieved at the kitchen table. She came back with a set of car keys that had been waiting for me since my first test. I proudly put them on my key ring.

Driving afforded me the ability to expand my world. I could go places, see friends, meet new people and run errands. Most importantly I experienced different situations that the limited mobility I had in those years after my recovery would not have allowed. This was especially poignant to me because I well remembered what losing my independence to my failing health was like while I was in a wheelchair.

My health issues continued. Another consequence of my facial paralysis was that my lower lip tissue stretched so that it curled out and down because of the lack of muscle support. By July of 1975, I was getting leather lip where the lip skin grows back into the mouth. I saw a plastic surgeon who proposed a simple procedure done under a local anesthetic. He would cut a wedge out along the inside of my lower lip which would raise it up when the two sides of the gap were sown together. This seemed like a good solution. The only drawback was that since my lip tissue would keep stretching and curling down I had to have this surgery every four to five years.

The following October I was back in Toronto at the Wellesley Hospital for the surgery. I was brought into a small OR while still in my street clothes. I got up and laid flat on the operating table and they covered me with a green sterile sheet. The surgeon marked out on my lip where he had to cut. Then came the needle. Starting on my right he poked my lip and injected the freezing. EXCRUTIATING! I gasped each time he injected the freezing as I laid there as rigid as a board trying my best to endure the pain. It took five pokes to freeze my lip all the way across. Next he picked up a scalpel in his right hand and forceps in his left. He started to cut out the wedge pinching the end of it with the forceps. As he cut along the lines I could see an ever increasing length of tissue that was once part of my lip. Blood trickled down my throat. After he cut the wedge out he proceeded to stitch me up. The freezing was wearing off as he was finishing just as he said it would. I felt the last few stitches going in. It took half an hour from start to finish. I walked out of the hospital accompanied by Mom with a swollen, bloody, stitched–up lip. My lip healed during the next two weeks.

Over 22 years I had this procedure four times – two at the Wellesley Hospital in Toronto and two at St. Joseph’s Hospital in Thunder Bay. I still wonder if cutting with the scalpel would have hurt less than injecting the freezing.

I never gave up on the hope of regaining the ability to smile. So in 1977 I was excited to discover a doctor at the Cleveland Clinic in Ohio had developed a new surgical technique to help people with facial paralysis. It involved rerouting a sensory nerve from the front of the neck and attaching it to the obicularis oris muscle surrounding the mouth. If it worked I would be able to move my lips again. But there was a trade off. I would lose the feeling in an area of my throat in exchange for regaining the use of my lips. It was a trade off I was willing to make.

Mom, Dad and I flew to Cleveland to see the doctor. He said he could do the procedure the next day. If I wanted to go ahead with it he had to know soon so he could book the OR. I had an hour to decide. At 17 this was the first time the decision to have surgery or not was mine. It was a huge decision to make on the spot. As I thought about it I said to myself, “Why am I here? He can do it tomorrow so let’s go for it.” My answer was an enthusiastic, “Yes.” I had to get pre-op bloodwork, have an ECG and be at the clinic for 6:00 the next morning.

To get the obicularis oris muscle to function fully the doctor would have to take a nerve from the right side of my throat and try to attach it to the right side of the obicularis oris muscle. Then he would do the same with the left. He would do both sides if the right was successful. When I woke up after surgery only the right side of my throat was bandaged. The surgery was unsuccessful. Since the muscles in my face had lost their nerve supply five years before they had wasted away. The doctor could not find any trace of the obicularis oris muscle to attach the nerve to so he put it back in my throat. It took six months for the feeling to come back.

It was the second try to regain at least some movement in my face. Again I was disappointed. Biofeedback couldn’t help me and the surgery in Cleveland was unsuccessful. My quest to find someone who could give me facial movement was like Dorothy searching for the Wizard of Oz. But I didn’t want a heart of courage – just a smile.

“Someday I’ll get my smile back.” I was confidence that another surgical technique would be developed.

That fall Aunt Josie, Mom’s sister, and Uncle Jimmy came to visit us from London, England. I was apprehensive. My appearance had changed so much since I saw them seven years earlier when Mom took me overseas to visit the relatives when I was ten. I didn’t want them to see me until my facial muscles had regenerated and I was back to looking the way I was then. When we met I was no different to them. Their acceptance encouraged me to come to terms with the changes in my body. I had adapted to my balance and co-ordination issues but I hadn’t fully accepted my facial paralysis. I still clung to the hope that somehow the cranial nerve would regenerate and I would get the movement in my face back. The cold, hard fact was the nerve would never regenerate. My Aunt and Uncle’s acceptance of me, despite the changes in my body, helped me accept who I had become.

“I’ll have facial paralysis for the rest of my life!”

The thought fell on me like a ton of bricks. I couldn’t grasp a sense of how long that was, but I accepted that facial paralysis would always be part of me.

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!