Month: May 2015
Taking Stock – My Disabilities
In June of 1976 the doctors at Princess Margaret Hospital were satisfied my tumour had been successfully controlled. Tumours have a habit of growing back or showing up in different parts of the body. Mine never did. I was treated for my tumour and that was that. The condition my body was left in after I recovered from my radiation therapy reaction hasn’t changed in 40 years. Except, of course, that I am 40 years older and all the effects of aging that happen normally to everyone else are happening to me – those little aches and pains, grey hair and bifocals.
It never occurred to me until writing this memoir that the doctors would only say they controlled my brain tumour and not that they killed my tumour as I do. I guess they could never be 100% certain that they eradicated it but only hopeful that they had. After 40 tumour-free years I can safely proclaim my brain tumour dead and gone.
As I recovered from my radiation therapy reaction everything I did was by conscious thought – every hand movement and every step. I remembered doing all of these things because I had to consciously think about them. When I started doing things automatically again I’d be checking myself to see if I had done it – ordinary things like pick up a mug and put it in the cupboard, turn a light off or push a door closed behind me.
After I recovered from my radiation therapy reaction in 1974 I had an acquired brain injury which left my body in the following condition:
- Facial paralysis
- 85% ability to swallow
- Speech impediment
- Ataxia – dexterity, balance
- Muscle wasting – Upper calves, Fronts of thighs, Triceps and Lower back
- Progressive hearing loss
- Expanding my chest
- Facial paralysis
My brain tumour damaged the cranial nerve controlling my facial muscles. The radiation therapy together with the reaction killed the nerve. Even though I lost all movement in my face I kept the feeling. I will never make any facial expressions like raise my eyebrows, frown, squint or have a big, wide smile.
I lost the ability to press my lips together to close my mouth while I eat and drink. Eating involves cutting up food, putting it in my mouth and pinching my lips together while I chew and swallow. If I don’t the food falls out as I chew. Pinching my lips together only approximated closing my mouth. There are times when bits of what I’m chewing fall out. I try to be diligent to prevent this from happening but it does now and again. I also make more eating noises when chewing and swallowing. I try my best but some of it just can’t be helped. Have you ever tried swallowing with your mouth open? It’s hard but you can.
I don’t have a wall of muscle in each side of my face to keep what I’m chewing in the centre of my mouth. As a consequence food collects in my cheeks. Along with pinching my lips together, I’m constantly pushing the sides of my face with my fingers to get the food out of my cheeks back into the centre so I can chew and swallow it.
Drinking from a cup is a similar procedure. I partially pinch my lips together with my left hand to approximate the form I need to drink. Then I put the cup to my lower lip supported by my thumb, pour some of whatever I’m drinking into my mouth and pinch my lips together before I take the cup away. If I don’t pinch my mouth closed right away the liquid runs down my chin.
Nobody told me, “Brian now that you have facial paralysis this is how you eat and drink.” I doubt anybody could have. It’s my solution to the problem. I hope sharing my method can help someone deal with a similar situation. After 40 years of eating and drinking this way it’s automatic. I would rather not have to do this but if I want to be as neat as I can be, and I do, this is life. My method of eating and drinking makes many people visibly uncomfortable. Their discomfort makes me uncomfortable.
Facial paralysis does not allow me to close my eyelids so that they meet. This gap means I constantly have dry eyes and need to put drops in them daily. I can open and close my upper eyelids but they are weak. Because I don’t have cheek muscles pushing my lower eyelids up I can’t scrunch my eyes shut. I have to cover my eyes when washing my hair or I get shampoo in the gap between my eyelids.
- 85% ability to swallow
During 1973 and into 1974 I had to chew food well and wash it down my throat more than swallow it. By the end of 1974, 85% of my ability to swallow returned. Things I can’t chew well such as raw vegetables (carrots, broccoli and cauliflower) or dry rice get stuck in my throat. I have to wash them down with more than a sip of whatever I’m drinking. You never see me chewing on carrot sticks at a party. Celery sticks are okay. They’re a bit stringy but they go down well.
- Speech impediment
After my radiation therapy reaction recovery I was left with a tongue that was a half step slower than average. I have to pronounce all sounds of speech with my tongue. This impedes my speech. Not being able to alternate between lips and tongue to pronounce words further slows my speech. Over time I learned to mimic the bilabial “b,” “m” and “p” sounds closely with my tongue. The fact that I don’t move my lips to pronounce these letters confuses people at least at first. This adds to my communication problem.
Ataxia: The impairment or inability to co-ordinate voluntary muscle movements. It is symptomatic of some central nervous system disorders or injuries.
Ataxia – dexterity
I always knew my dexterity was slower than most people’s because of the damage caused by my brain tumour and treatment. Not until I was 52 did I get it tested. It’s now official. According to the General Aptitude Test Battery results I am half speed. That is I flip ten pegs to the average person’s twenty in the allotted time. Although my hands are slower I can manipulate most objects fairly well. This affects my hand writing which makes it less legible. I found one of my Grade 5 school workbooks. I think I had better hand writing back then. My top typing speed is 20 words a minute. Not bad. I keep practicing but my fingers don’t seem to want to move any faster.
As I said every hand movement I made after my recovery required a conscious thought to control it. I could reach for and pick up a cup as I had always done but it had become clumsy. So I closely watched the cup as I concentrated on my task. I consciously thought out the hand movements involved in reaching for the cup, grasping hold of it and picking it up. Then I slowly reached for the cup. I did this for every object I used. After a year of practice I became fairly proficient at manipulating most objects.
The increasing loss of balance was one of the symptoms which lead to the diagnosis of my brain tumour. My balance was poor when I went to Toronto in 1972. It got worse during my radiation therapy reaction in 1973.
Over time I adapted to it. I observed after learning how to walk that one important aspect of maintaining my balance is where I placed my feet when walking or turning on the spot. When I lost the ability to walk I forgot where to place my feet so I wouldn’t lose my balance. Paying close attention I learned proper foot placement. Because of the ataxia I’m slower placing my feet in the correct position to prevent losing my balance. Improving the muscle tone in my legs and lower back helped improve my balance as well.
My sense of balance is poor and will always be. The neurological damage that caused it is permanent. I’m always watching where and how I can best walk over different terrains. I’m frustrated by my mobility problem at times but I only have to think back to my walker and wheelchair to snap me out of it.
One fear I have is being pulled over by the police and asked to walk a straight line – heel to toe. I can’t do it regardless of my state of sobriety. The same goes for blowing on a breathalyzer straw. I’ve never been asked to do either and hope I never am.
Muscle wasting – Upper calves
The muscle wasting in my upper calves was one of the symptoms of my brain tumour noted by the doctors in 1972. As this muscle wasting developed I found it harder to hop as in Jumping Jacks.
- Fronts of thighs
The wasting of these muscle groups occurred during my radiation therapy reaction. When I was walking again, and felt confident enough to run (trot), I found when I got up to a certain speed I’d trip and fall over. “What did I trip on?” I’d ask myself as I looked around. I realized that the thigh muscles weren’t strong enough to lift my knee fast enough to take the next stride. This is still the case. Weakness of the thigh muscles contributes to my balance problem.
I first noticed how weak my triceps were after my radiation therapy reaction recovery when I was next door shooting hoops with a friend. I’d take the basketball in my hands. When I threw it up to the hoop by pushing it I could only throw it three quarters of the way.
- Lower back
It was during my radiation therapy reaction recovery when I first found that my lower back muscles were weak. I pulled a lower back muscle lifting something fairly light. I could only be down on my hands and knees while gardening for 20 minutes. After shoveling snow my lower back would hurt and seize up and I had to lie down to rest it. Not until I was 50 years old did I think of strengthening my abs to do some of the work for my lower back. It really helped.
Light weight training and daily exercise helped strengthen all of my muscles but the muscle groups that had wasting are weak. I didn’t get stretch marks until my radiation therapy reaction and being on the decadron medication. The only places I have stretch marks are over the muscle groups where the wasting occurred.
Progressive hearing loss
The condition my body was left in after my radiation therapy reaction has pretty much stayed the same except for my hearing. When I was twelve I remember not understanding some of the words spoken to me even though I had no trouble hearing them. Thinking back it was a symptom caused by my brain tumour that was considered to be me not paying attention. My tumour was starting to press on the auditory (8th cranial) nerve. The radiation therapy caused partial destruction of the myelin sheath around the auditory cranial nerve which further restricted its action. I’ve had progressive hearing loss ever since. My hearing in both ears has degraded to the point where I’m dependent on hearing aids to function.
Expanding my chest
By the time I was diagnosed and treated for my tumour I had lost the ability to expand my chest. During 1974 it gradually returned. It’s the only body function I lost or was losing to my tumour that I fully regained.
In 1973 at one point I had lost most of my dexterity and co-ordination so that I could barely feed myself, swallow, or speak. I get tense remembering my frustration and heartbreak as I gradually lost my independence. I regained these functions in time, albeit not fully, but I am aware of what might have been. Sometimes I ask myself, “How close did I come to staying that way?” With the help of family and friends and a lot of determination I was able to cope through the ordeal of my brain tumour and recovery. I put my walker aside and I got out of my wheelchair. My sense of balance is as poor now as it was then and always will be. The muscle wasting in parts of my legs, arms and lower back has left those muscles weak. I will always need to use a handrail to steady myself going up and down stairs. At times I feel that I never left that wheelchair far behind. Still I got out of it and I never want to have to sit in one again.
As I take stock of my life I ask myself, “If this didn’t happen to me what would life have been like?” Would I have gone through my teen years like most teenagers? Maybe I would have been married in my 20s and soon be celebrating my 25th wedding anniversary. I might have had a family and possibly have grandchildren by now. Or maybe I’d have remained a bachelor. I may be living half way round the world and never been a chemist or entrepreneur. The possibilities are endless. Things may have been different for me but the way everything has turned out just might be the way they should be.
These words speak to me in the deepest way. In my 10 year decent into depression and anxiety I did all of these 5 things along my 2 year climb out of it. If you are suffering from depression and anxiety and can’t see a way out know that there is and here is how to do it.
Photo Credit: http://www.cardstore.com
Four years ago today, I took my first tiny, shaky steps down the road to recovery from the depression and anxiety that devoured me. As I look over my shoulder, the anxiety and depression no longer are bearing down on me, waiting to pounce again, and there is enough distance between the road I traveled then and the road that I am on now for me to look to the future, not the past. On this unconventional “anniversary”, though, I find myself recalling how I got from there to here and feeling immensely grateful for that journey.
When my world imploded, I had no idea just how many steps it would take to find, get on, and stay on the right path that would lead me out of the suffocating darkness back to the light. There were plenty of proverbial “one step forward and two steps back”…
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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!
By January of 2009 I was out of money. I had spent what I had left on new hearing aids trying to get my hearing back and on learning once again a new trade. Catharine suggested I apply for the Ontario Disability Support Plan (ODSP) – essentially a disability pension. I applied with her help. For the first time in my life it was beneficial for me to have disabilities. Once I had described all of my disabilities to them and how they impacted on my life it wasn’t hard to qualify. ODSP gave me the breathing space I needed to regroup. My disabilities had gained the better of me and I needed time to get a handle on them. Being on disability allowed me access to the counselling I needed to deal with my depression.
Three months after I started receiving disability benefits a program called Building Bridges (BB) started. Building Bridges was for anyone who wanted to start a business and become self-employed. BB participants could either supplement their ODSP income or get off it altogether. I jumped at the chance. After my longstanding troubles with trying to find paid employment, I now saw self-employment as my most viable option if I was ever going to get back into the workforce. I was determined. This time being in business would be different. There was very little stress in copywriting, virtually no overhead and I could work from where I lived.
The timing of this program couldn’t have been better. Building Bridges was formed through the partnership of two agencies – Ontario March of Dimes (OMOD) and Independent Living Resource Centre (ILRC) – plus the PARO Centre for Women’s Enterprise (PARO), a not-for-profit business helping women start a business to achieve their independence. ODSP oversaw the progress of the BB participants. The beauty of BB was that social service agencies were partnered with the corporate smarts of a business.
I was in the pilot project for the Building Bridges program. In its 15 year history I was one of the first three men to receive business help from PARO. As you can imagine the men were widely outnumbered by the women. I called it “mixing it up with the ladies” and it was an experience. PARO helped me complete what I’d tried unsuccessfully to do by myself which was to compose a business plan and start a copywriting business. On February 16, 2010, I proudly started BGS Communications, (Brian G. Spare Communications). I became a freelance copywriter with PARO as my first customer.
Then I had an idea for Herman Melville’s Moby-Dick. I really liked the story but the 1850s English was hard going. “Somebody should re-write this into modern prose,” I thought. I decided I would do it. Over two years I abridged and translated Moby-Dick. When I was finished my work was different enough in from Melville’s novel to give it its own title. On October 12, 2012, I launched my first book The Hunt for Moby Dick.
The Independent Living Resource Centre (ILRC) ensured that the Building Bridges participants, given their disabilities, could apply the business skills they learned at PARO. The workshops and seminars at PARO and ILRC provided me with much needed practice in listening to lectures and participating in group discussions. My confidence level was boosted enormously as I learned to adapt my hearing. I was inspired to join the Board of Directors for the Independent Living Resource Centre Thunder Bay.
Ontario March of Dimes’ part in the Building Bridges program was to test for and to teach me the basic skills that I needed to work such as computer and typing. Their aptitude test showed me to be suited for writing among other things.
There was a constant conflict inside me. I wanted to forge ahead in life but at the same time go away and hide.When I explained my situation to OMOD they found me a counsellor for my depression. His name was Hugh. I was expecting Hugh to have a Dr. Phil look with a regular hair cut, standard sports jacket, dress shirt, dress pants and shoes. The man I met was ten years older than me with thinning, grey, shoulder length hair. He wore a denim vest, button up shirt, jeans and moccasins. I found Hugh to be a very knowledgeable, highly intuitive, warm and peaceful man. He wore a broad smile, had a genuine concern for people and was sincere in everything he said. Hugh and I worked well together.
During two years of monthly sessions Hugh coached me out of my depression. It took me that long to change my mindset and really catch on to what he was telling me. Hugh got me to face the hostility in the dark, craggy, cold, gaping hole in my chest. He said the hole was not hostile. It was my space and I had no reason to get rid of it. I learned from Hugh that the hole – the deep emotional wound I couldn’t heal – was my parents’ influence on my life which left me the morning Mom died. What I lost that morning was what I needed to lose if I was truly going to find myself. From then on that hole became a friendly, clean-edged, light-filled space – my space – a womb full of warmth that I could expand to accommodate and nurture all my thoughts, dreams, feelings and experiences. I was released from a feeling of deficiency and found that I am, in a word, complete. I could believe in myself again.
After many failed interviews I found work for a short time in a geochemical lab. Then I applied to work in a medical lab only to be told that I would have to re-train since I had been out of the field too long. This rejection was my motivation to try new things. I had a decision to make. Do I spend three years of full time school retraining to get my old medical lab job back or do I try my hand at something new – something of my choosing? I opted for the new. The time for change had come. I would close the door on the scientific world and open another to take my life in a different direction. When I came to this decision I was filled with a sense of freedom. I felt some guilt too since I was departing from the life my parents had worked so hard to forge for me. Even though I was more or less forced into it all the feelings I had about this change were very positive. I knew intuitively that making my way through life on my terms was what I had to do.
My parents had been dead for over a year and I had made many decisions of my own accord like renovating the house and settling Mom and Dad’s estates. When it came to changing the direction of my life, despite the positive feelings, I wanted their consent – as if I needed to hear them say, “Brian, it’s all right.”
I went to St. Andrew’s cemetery and told Mom and Dad my plan as I stood in front of their headstone. What I got for a reply was a resounding silence. It was a shock but what was I expecting? I realized then that this grave was only a marker of my past life and not an anchor to it. Until that moment I couldn’t fully separate my parents from my new life. I had decided that since my parents were buried in Thunder Bay here is where I must stay. But the silence of their grave shouted back at me to make that final separation. Never again would I consider what my parents might have wanted. If ever I needed to leave Thunder Bay I would.
The question now was – what should I do? Drawing and designing were things I had always loved to do. So in September of 2002 I enrolled in the three year Architectural Technology program at Confederation College in Thunder Bay. When I started the program I weighed 186 lbs. With the stress of full time study adding to my bad nerves I resorted to comfort foods. At the end of my second year in the Architectural Technology program in April of 2004 I was 207 lbs.
That July my doctor discovered I had high blood pressure. I was shocked. My blood pressure had always been normal.
The doctor said, “Brian, the number one cause of high blood pressure is being overweight and not exercising.”
I sat for hours in front of a computer at the college, drove home to sit in front of the TV and I was very overweight. There was no denying it. I was fat.
The year before I started college I told Catharine about my frustrations in my inability to find work. “Thin people are taken more seriously than fat people,” I said, “I can’t do anything about my facial paralysis or my balance but I can thin myself out.” Even then I wasn’t seriously trying to lose weight. I sought to solve my weight problem with plastic surgery. I’d simply have the fat removed – a quick fix – and I started to look for a plastic surgeon.
After I was told that I had high blood pressure something clicked inside me. I became so frustrated with myself in knowing that I was the author of this. I had let myself get to this point. For years I said I should lose weight. I went on a diet and dropped a few pounds only to put them back on plus a few more. When I spoke to the plastic surgeon at St. Michael’s Hospital in Toronto who eventually operated on me, she said she could do the surgery but first I had to lose 50 lbs. There was no easy way out and that’s what I needed to hear. Now I was adamant. “I will lose weight,” I said and I set out a plan to do it. I made an oath with myself. “I’ll be 180 lbs by Christmas and after that I’m losing five pounds a month.” It was a challenging but realistic goal – a goal where I had to change my diet and lifestyle enough so the weight would stay off.
From then on I watched every calorie and reduced the amount I ate to the point of feeling a bit hungry most of the time. I needed to get my stomach to want less food. Comfort foods were out and fruits and veggies were in. The only exercise I could do with any proficiency was walking. So everywhere I went involved going for a walk. I went for a long brisk walk (and sometimes two) every day. By New Year’s, 2005, I was 180 lbs (close enough?), 175 by the end of January, 170 by February 28th, and by April’s end I had lost 50 lbs. I saw the surgeon in June of 2005 and we scheduled my surgery for October 30th. A pang of emotion swept over me as we set the date. “It’s really going to happen,” I said to her. The goal I diligently worked so hard at for over a year was going to become reality.
“Yes it really is,” she said.
I chose this surgeon because I sensed she understood why I was doing this. She saw it was part of what had become a personal mission to better myself and to get ahead in life.
For the months up until surgery I stayed on my weight loss regimen. As I got down to 160 lbs I asked myself, “How much weight is enough to lose?” My body told me. When I reached 140 lbs I started to feel thin. I knew I was close to the weight I should be. By the time I had surgery I was 131 lbs. I lost 76 lbs. This surgery was the first of two. It was a tummy tuck and buttock lift to remove the excess skin left over from losing weight and the skin folds I’d had for years from being on decadron.
When I woke up I had a gruesome-looking surgical wound that went right round my middle just above my hips. I looked as if I’d been chopped in half and sewn back together. Fortunately it didn’t hurt that much. I dropped ten pant sizes from 40 to 30 and medium sized shirts to small. Best of all my blood pressure returned to normal. The second part would be done the following October to remove the redundant skin folds on the insides of my upper arms and inner thighs.
The night before I went into St. Michael’s for my second plastic surgery I sat in a chair of my hotel room and thought. “How many surgeries have I had by now?” Counting them up I’d had 20. Tomorrow’s surgery would be number 21. Four years passed from when I started looking for a plastic surgeon to my second surgery.
But it wasn’t enough to find a surgeon. I had to pay for the plastic surgery. I used most of my savings to do this. It was money well spent. I have no second thoughts about that. My body is no longer the source of embarrassment that it had become for years. I have more energy and people take me more seriously. I’m proud of my achievement. All the positive feedback from people was terrific.
“Are you Brian Spare who …?”
“Wow, you lost so much weight I hardly knew you!”
It’s great to hear and it boosted my sense of accomplishment tremendously. I got comments like this for over a year.
The day after I got back I started reintegrating into Thunder Bay life. When I was renovating the Whalen Street house I became interested in Interior Design. That September I signed up for an evening course at Confederation College called “The Theory of Colour,” the first of five courses which I took over the next year and a half to earn a certificate in Interior Decorating. I was the single male out of an average 20 participants in each course. At first I felt like a fish out of water. But I got to like being the only man there and I developed a good rapport with the ladies. To this day Interior Design is a keen interest of mine.
Dad’s parents wanted him to be a commercial artist but Dad had his mind set on becoming an engineer like his Uncle Ted. Dad was always doodling caricatures of people and he was good at it. I’ve kept all of his drawings and one of his paintings hangs over my desk. I wondered if I had inherited any of his artistic skills. I signed up for a painting class as well. We made landscape and still life oil paintings and sketches. I found I did have some talent. I joined a painting group in January and found my niche in painting colourful landscapes.
I applied for work in other private labs in Thunder Bay and just about any job I thought I could do but to no avail. Nobody wanted me. There is no doubt in my mind that my general appearance shocked most potential employers. I got to know the expression on the face of a job interviewer seeing me for the first time. His/her eyes would widen slightly and gasp a bit while straightening up in the chair. They would be at a loss for words until I said hello. We politely went through the interview but I knew I didn’t have the job before we started. When I saw night work at the newspaper I applied for it. “At least nobody has to see me on the midnight shift,” I said to myself. I didn’t get past that interviewer either. The interviewers whom I met assumed my physical disabilities impaired my basic intellectual skills. That was their first impression of me and those perceptions are hard to change.
I vented my frustrations to my long time friend, Olga. She thought how unfair it was to turn someone down because of their appearance. Olga had left teaching to become a successful insurance agent and had joined a Rotary club. Twice she took me to a Rotary meeting to introduce me to her business contacts. Olga knew what I was able to do and her contacts would take her word for it regardless of what they thought when they saw me. But I shied away from Rotary. I was feeling very unsure of myself emotionally. The thought of working with confident, self-assured people was daunting. I didn’t join Rotary and I spent many frustrating years searching to find, on my own, those contacts Olga had tried to provide me with. I spoke to Olga a few years later and admitted, “Getting me out to Rotary to find contact people was exactly what I needed.”
Olga looked at me and said, “Brian, you weren’t ready for it.”
In many ways I was lost. In the split second when I found Mom dead in bed the tapestry of the protected world that my parents made for me unravelled. A big chunk of me jumped out of the middle of my chest, out through her bedroom window and away into the sky. It left a fathoms-deep, dark, cold, craggy-edged hole that I wanted to fill with whatever departed. I didn’t know what had left me but I knew I wanted it back. I felt the weight of that hole with every breath.
The effects of the shock wave that hit me that fateful morning when I found my mother dead stayed with me for a year. I shut down emotionally and yet my heart ached with an emptiness I could not suppress. Tears left me that morning and I have not shed a tear since. For the first two months I hurt twenty-four seven. As the year progressed I wasn’t hurting all the time and I felt guilty for not hurting. We’re strange creatures, aren’t we? The hurt turned into what I came to know as anxiety and depression. It was with me all the time dogging every aspect of my life – like wading through waste deep water impeding my progress to do things. Nearly everything I did was such an arduous task that any feeling of accomplishment was taken away and replaced with relief that it was finally done. For ten years I searched for a way to get rid of the grief my nerves caused me.
“I don’t control my nerves anymore. They control me. If only I could find what left me I’d be better.”
Once the first year had passed my anxiety and depression were at their worst from mid November through January. Maybe it was the seasonal bleak, cold weather, the approach of the Christmas season or both. Once November set in I dreaded the coming of Christmas. When the holidays arrived I wished the days away even though I still liked the cakes, goodies and get-togethers that came with that time of year. I breathed a sigh of relief when February came and an even bigger sigh when March arrived.
My life quickly changed. It now took a different road – one which did not include my parents. As I endeavoured to trek down that path I asked myself, “Who am I now? What am I? Should my life take the direction it was heading when my parents were alive?” Only one thing became clear. Who and what I am had changed and I had to redefine myself. It was somewhere in that redefinition I would find answers.
I concluded that I couldn’t stay in the Whalen St. house surrounded by the trappings of the past while I searched for my new life. I also realized that just changing where I lived wouldn’t be enough to remake myself. The church I attended had to change as well. The decor of Corpus Christi church would constantly remind me of the many Christmases, Easters and special events of my past life that took place there. The people had to change too. I needed to be part of a parish community where the congregation would know me as Brian and not as my parents’ son.
“If I’m going to move this house needs renovating,” I told myself.
Room by room I painted walls and steam cleaned carpets. As I worked my way around the house I sorted through literally one ton of books and gathered the collectables accumulated by my parents over five decades. No way could I cart all this stuff around with me nor did I want to. It was my parents’ life and not mine. I donated the collectables and novels. The old sets of encyclopedias went to the recycle depot. Working on the house was a transition period when I prepared for my new life.
Two weeks before Christmas I finished renovating. I called Catharine. “Why don’t you and the kids come for Christmas dinner? It’s probably the last Christmas in this house.” She thought it was a great idea. That year I did something I had never done. I roasted a turkey. We had a wonderful holiday meal. In so doing Catharine and I started to say good-bye to the house we grew up in.
By March, 2000, my mind was set. I’d sell the house and a FOR SALE sign went up on the front lawn. Three months later on June 15th, one year to the day that I laid Tara to rest, the house was sold. I bought a condo across town and took with me only a scattering of memorabilia and, of course, my Team Canada autographed hockey stick. Catharine came over the morning of moving day and we toured the empty house talking about all the things that happened over the years. We ended up in the living room and decided it was time to go. I followed Catharine out the door and locked it. She drove with me to my condo and helped me move in.
Once I was settled into my new home I began the search to find myself. My first plan was to travel. I wanted to visit Switzerland. I waited five years to do this. In 1995, when Mom and I flew overseas to see relatives during the month I took off from Tara, while in France, I wanted to tour neighbouring Switzerland. It wasn’t in Mom’s plans and I didn’t go. This time I set the agenda and I made it my first order of business to see Switzerland.
The other goal was to establish my own relationship with my relatives. On the previous trips I was an appendage to my parents’ plans. As long as I was simply a part of Mom and Dad’s visits I remained, at least in my aunt’s and uncle’s eyes, my parents’ son Brian the boy. On this trip I was visiting everyone by myself on a schedule that I set. I would be Brian the man and self-determining individual.
My journey started when I arrived in Paris the morning of August 1, 2000. First on my itinerary was a city bus tour. Seeing the Louvre and Eiffel tower again was nostalgic. They reminded me of my previous visit with my mother when I was ten.
“It’s been 31 years since I’ve seen this.”
The buildings hadn’t changed but I had. In 1969, I was a boy led around by his mother. In 2000, I was an independent confident man. The day was mine. I freely spoke with people and walked about the city.
Back at the hotel I got ready to begin the rest of my trip. As I reviewed my plans I was filled with an anticipation of both excitement and anxiety. I was going to see a country of my choosing and establish my own relationship with my relatives. That evening I eagerly waited at the train station to board an overnight train to Zurich to start a three day jaunt through Switzerland. Day one saw me on a bus tour through Zurich, the financial capital. The next morning I rode the train to Luzern. It was a quaint little town with all its shops. I felt so at peace. A cogwheel train took me up the side of Mt. Rigi through “Heidi country.” The third day I travelled to Geneva for the most awesome fireworks display on the waterfront. The sky was a perpetual burst of colour celebrating Geneva’s birthday. It was worth the trip to Geneva just to see that.
The next day I caught the train to Lyon, France to meet my relatives there for the first time by myself. I was openly welcomed by Mom’s sisters, Delia and Nell, and cousins, Claire and Johnny (Delia’s children). It was a very pleasant four day visit. All too soon it was time to go and Aunt Delia and Johnny saw me off on the train back to Paris to catch my flight to Dublin, Ireland. As I left Lyon I knew I was leaving behind aunts and cousins who had bonded with me.
I spent four days in Ireland at Aunt Gertie’s house in Corofin, County Galway on the farm where Mom was born and grew up. As soon as I set foot in Corofin something stirred within me. It’s hard to put into words the yearning in my heart that began when I arrived in Corofin. I had a burning desire to record and preserve these moments. From then on my trip became a mission which I was compelled to complete. I walked around the area taking pictures of everyone and everything. While I walked I tried to imagine Mom’s life growing up on the farm and her thoughts when she last visited here in July, 1995. Was I seeing this place for the last time? Would I have conversations with my relatives here again? When would I be back? I had no idea. So I had to document it all.
I stayed at my Cousin Kay’s house in Dublin for my last day in Ireland. She and husband, Tom, saw me off on the plane to England to visit Aunt Jean, Dad’s sister, in Northampton, and her daughters, Diane and Valerie, for a week. I went to nearby Lower Harlestone, the village where Dad was born and raised, and where I would have liked to have grown up. Roaming through the village I noted all the places in Dad’s stories. Just as in Corofin I had to photograph and commit to memory as much as I could.
For the last three days of my trip I stayed with Mom’s sister, Josie, in London. I wanted to see Uxbridge and Hillingdon Hospital. They were only a short train ride away. I had to see the town and hospital where my parents had worked and met and where my story began. I had no idea where in Uxbridge Mom and Dad had lived. So I looked around the train station knowing they must have gone through it many times. I needed to walk around a few streets of Uxbridge to get a feel for what they might have seen. Then I walked to Hillingdon Hospital. As I approached I took a picture of the old exterior and went in to walk around the ground floor halls. I wanted to get a feel of the place and wondered what the walls could tell me. Eventually I had to admit it was a hospital that looked much like any other and had no special appeal to me. I left Hillingdon Hospital and Uxbridge with the satisfaction of having been to see them. With my mission complete I headed back to Aunt Josie’s. Early the next morning I said a quick good-bye and thank you to Aunt Josie, got into the waiting taxi and caught my flight back to Canada. This trip gave me a sense of closure on my parents’ lives and on the life I had with them. It opened the door to my own relationship with my relatives.
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.