Hydrocephalus Canada

BROCK MASTERS – No Obstacle Too Large

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My name is Brock Edward Masters and I was born in Ottawa on April 8 1980. I was quite a handful for my parents right from the get go. I found just about every way to injure myself: Falling off of my bike; Jumping off of the highest part of jungle gyms; Being the neighborhood toboggan terror; and Fighting with my siblings. I broke my left eye socket white water kayaking on the Madawasks River, (Now I have a titanium plate in my face); And last, but not least, when I was 17 years old, believe it or not, I was struck by lightning while working at a summer camp.

On top of all the obvious bumps, bruises and physical injuries that I had brought upon myself over the years, I was experiencing a pain that I hid from my family and even my closest friends. It was a pain that would not go away, an emotional wound that to this day brings back difficult memories. As a child I was cursed with the inability to control my bowels. There was neither rhyme nor reason for the problem, only the certainty that I was just going to keep having “accidents”.

My parents tried everything. We saw pediatricians. We saw gastrointestinal specialists. We saw psychologists. The answers they offered us ranged from “Mr. and Mrs. Masters, we believe your son could potentially have an intestinal parasite” to “Mr. and Mrs. Masters, your son has behavioral issues and this is his way of seeking attention. We suggest you try punishing him for his behavior.” But the worst and most frightening of all the diagnoses was “We don't know why Brock is doing this, from what we can tell he looks to be a normal healthy kid.” I was afraid to leave my house to go on sleepovers. I feared long drives and visiting shopping malls. But more terrifying then all of these combined, was the dreaded class trip. A journey into the unknown with a busload of children armed with cruel words, pointed fingers and laughter directed at my embarrassment.

The only thing I could do was pack wet naps, a plastic bag, some spare underwear and the inner certainty that this was not my fault. The temporary “solution” became having an enema in the morning before going to an unfamiliar place. But this was almost as embarrassing for me as having an “accident” and certainly it was frustrating for both my parents and me.

The curtain of hope began to rise when I was ten years old. Something peculiar was happening to my lower extremities. My legs were beginning to bow inwards. My feet and toes were curling under themselves (club foot and hammer toes). And I began to feel strange shooting pains in my back. Now some people would say that this doesn't sound like a “curtain of hope” but to my pediatrician it was a sign. Finally there was something definite that could be used to make a diagnosis.

I went to see a neurologist at the Ottawa’s Children’s Hospital [CHEO]. After many tests
it was confirmed. I had spina bifida (sb). This by no means was a welcome addition to my life. Children with sb generally have a long and painful road ahead. But now at least we had an explanation for my difficulties, my bowel troubles were not my fault. I could breath with ease about the past only to hold my breath about a new and uncertain future.

My first experience in the hospital was far from what one would call pleasant. I required a spinal cord operation to release the nerves in the spinal column (tethered cord). It took the doctors and nursing staff twelve hours to perform what we at the time thought would be the “ cure” for my condition. After two and a half weeks of bed rest I was excited to get the feeling back in my legs. Learning to walk all over again was a humbling experience, I felt like an infant taking his first steps but for the second time. After I achieved full recovery I realized that my medical journey was just beginning.

The years passed. The operations continued. And the neurological problems worsened. I experienced a complete loss of bladder function, atrophy of my leg muscles as well as the continued worsening of my gastrointestinal problems. I required multiple back surgeries, foot reconstructions, and an experimental “ cecostomy” surgery. Somehow the problems continued to worsen. The list of what needed to be fixed grew beyond what I ever pictured to be humanly tolerable. I can laugh about it now, but there was a time when I was on stand-by for O.R. time; I felt like someone standing at the airport with a fist full of cash hoping to catch a cheap flight. “Hey Brock what are you doing tomorrow?” the doctor would say over the phone. “We have a cancellation in the O.R. are you up for surgery?”

Whenever I would start to feel down, I reached for the words of wisdom my Aunt once spoke after her son survived cancer, “ Too many people utter the words ‘why me’ when what they should really be saying is ‘why not’” . She was right. If there is only one thing I know for certain in this world, it is this: Disability and personal tragedy will never discriminate. It doesn't matter what Class, Creed, Race or Gender you are. And if it finds you, you can either take it into your life, and allow it to help you grow; or it will shatter your soul and turn you into a bitter shell of a human being. I chose to push forward with what I did have.

For the latter part of my teen years I enjoyed helping out with friends at the local soup kitchen when I could and volunteering with the Spina Bifida & Hydrocephalus Association in Ottawa, helping to raise money with the Christmas wrapping each year at Billings Bridge Plaza. This was a way Mom and I could help raise both awareness and funds to help the SB&H Association. I also attended many of their different social functions. SB&H helped me to better understand how I could cope with the challenges that I faced. I grew as a person teaching leadership and the ability to help problem solve for those other individuals in the community who faced physical challenges. I took every opportunity to become active and fit, in whatever way I could. I started weight training and became a force to be reckoned with on the track. However my weapon of choice was not hi-tech shoes, but a racing wheelchair. Some of my fondest memories are of the time I spent pushing track wheelchairs. Within three years I had reached National level competition, had set 5 state records in the United States, qualified for both the American and Canadian National Meets and had visions of competing in the Paralympics.

Some able-bodied people found it difficult to conceive how I could take so much joy from a sport that required so much loss to be a participant. But I never saw it that way. I viewed the sport as an opportunity to educate the able bodied community. I showed people how disabilities are not always apparent to the uninformed onlooker. They can affect many people in many ways, some which are not always obvious.
In the fall of 1999, I faced another personal hurdle when my neurologist strongly urged me to stop racing. The constant strain of competitive racing was causing small micro tears and further nerve damage. These circumstances required another operation. This time the stakes had been raised. If I did not have the surgery I faced almost certain loss of function in my legs within five years. If I chose to go ahead with the surgery there was a good chance of complete paralysis of my lower body due to the complicated nature of the operation.

Choosing to proceed with the operation I hung up my race chair and gloves and made a pact with two close friends who were off to Europe for the year. If the operation went poorly they would be on the first plane back to lend support when I would need it most. If it were a success, I would pack my bags once recovered and join them on their worldly adventure.

Six months later I was purchasing my ticket to step out and prove I could be nomadic for nine weeks with no more than a tent, my clothes and more incontinence supplies than a medical supply warehouse. At the time I had to catheterize and flush my digestive tract (cecostomy) regularly. But nothing was going to hold me back. Not my bladder, not my guts, not my legs. I had a personal mission to accomplish, to prove to myself that no matter what this great world of ours could throw at me, I could look it square in the eye and say “sorry, better luck next time”.

Upon returning from an unforgettable odyssey I came to the personal realization that although my trip had been a success, I was still suffering from the constraints of an unpredictable digestive tract and it was time to look into what to me at the time was the one thing I feared most ... A colostomy.

When I first looked into having the colostomy surgery I was terrified. At this point in time I had come to terms with the differences in my physical appearance but was still very scared that having “ the bag” would be perhaps more than I was ready to deal with. I could not find all of the information I wanted before my operation, and I did not know what to expect.

Once I had the surgery I found that my health and emotional state improved dramatically. Although I had tried not to let my gastro-intestinal issues hold me back in the past, I was now truly free to completely enjoy a life from pain and the constant worry of “accidents”. Having had to give up snowboarding many years previously, I was once again out participating in winter’ s wonderland with a new passion for sit skiing. My confidence in public situations improved dramatically. I found myself out and about with friends and family without worry, no longer constantly on the lookout for the closest restroom. But something to me was still amiss.

Within hours of the ostomy operation, while I was still recovering in the hospital bed, I began writing and drawing up ideas to improve my ostomy supplies. I felt that they were functionally adequate at best and nothing more. I wanted to feel good about what I was wearing and know that it was going to stay where I put it while enjoying rigorous activity like sit skiing. I wanted to be able to be shirtless at the beach and not feel uncomfortable about the way my belly looked. I wanted to sit in the hot tub with friends and relax and laugh rather than worry about who was more uncomfortable, them or me. I wanted to feel the warm embrace of a loved one and still feel good about the way I looked and felt. Lets face it, self-confidence is essential to a healthy intimate relationship and I wanted to do something to ensure people had a chance to feel that way.
I did some research, confirmed that I had some truly new and inventive ideas for my products, and put several patents in place. I then attempted to license my ideas to the companies already in the market place. I quickly got discouraged after receiving several letters informing me that they appreciated my efforts but were not interested in my ideas. Determined not to give up I began to search for other means of seeing my dream become a reality.

While I was still exploring several options an opportunity that was clearly unlike any other arose. I heard about a famous Canadian inventor living a few hours from my home in Ottawa and I arranged a meeting to discuss my ideas for ostomy appliance improvements. After several lengthy meetings with Wayne Conrad our discussions led to a strong business partnership. Wayne, with over 25 years of manufacturing and business experience, took the time to educate me in product development, manufacturing, and establishing a new business.

It has been just over three years since I drew my first sketch of an ostomy product, while lying in my hospital bed. In that short time I have become the President of Active Lifestyle Products Limited, a company for “ people with ostomies”, founded by an individual with an ostomy. I want to see “ ostomy products” in the market place not “medical appliances”.

The companies latest success story is the launch of the Documentary "Reach for the Sky" co-sponsored by both Active Lifestyle Products Limited and Omachron Technologies Inc. Reach for the Sky is a powerful documentary which takes the viewer into the private lives of people facing ostomy surgery and shares the intimate thoughts of people who have built a new life after ostomy surgery.

I can stand proud when I say I have spina bifida. Yes, I have an ostomy. Yes I have to catheterize, and yes thoughts of my future health pass through my mind from time to time. I am privileged to be part of the United Ostomy Association of Canada and have an affiliation with the Spina Bifida & Hydrocephalus Association of Ontario. Both groups are made up of people who are dedicated to the support, enrichment, and emotional fulfillment of those facing the challenges of ostomy surgery, spina bifida and/or hydrocephalus.

I truly feel in my heart, that I am a better person having met and connected on a personal and emotional level with the people I have met through the UOAC and SB&H. If only every one in this world would lend the support and the helping hand that you, the members of this organization have given to me, I know we would all have a better understanding of what humanity is truly capable of.