You may not be responsible for being down, but you must be responsible for getting up.
Let my soul smile through my heart and my heart smile through my eyes that I might scatter rich smiles in sad hearts.
I am always inspired to see someone challenging the norm.
Madeline Stuart is an 18-year-old aspiring model, and she’s here to challenge society’s rigid definition of what “beautiful” is.
Madeline, who lives in Brisbane, Australia, has Down syndrome.
She writes on her Facebook page that she believes;
“modeling will help change [society’s] view of people with Down syndrome.”
“Exposure will help to create acceptance,” she says.
According to WPVI-TV, Madeline struggled with her weight as a youngster. Thanks to healthy eating and exercise, the teen lost 45 pounds. Madeline now dances, swims and does gymnastics and cheerleading.
Madeline’s mom, Rosanne Stuart, said she hopes her daughter will inspire other individuals with Down syndrome to make similarly positive lifestyle choices. Studies have suggested that children with Down syndrome are more prone to be overweight.
“People with Down syndrome can do anything,” Stuart told Buzzfeed. “They just do it at their own pace. Give them a chance andyou will…
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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.