LDOA Article - Brock Masters' Personal Story

Brock Masters, 24, of Hampton, Ontario tells his story about overcoming his personal hurdles when diagnosed with Spina Bifida and the resulting colostomy that changed his life.• Article added February 2, 2005

My name is Brock Edward Masters, and I was born in Ottawa, Ontario on April 8, 1980. I was quite a handful for my parents right from the get-go. I was a difficult birth, and I became even more of a challenge and a frustration when it was time for potty training. From what I can recall from my childhood, I found just about every way to injure myself:

But despite all of the temporary bumps, bruises and physical injuries that I had brought upon myself over the years, there was a pain that was hidden from my family and even my closest friends. It was a pain that would not go away, an emotional wound that to this day still brings on such difficult memories. It sometimes seems easier to try to forget that it’s there, rather then deal with the pain and the sadness that it brings. You see, as a child I was cursed with the inability to control my bowels. There was neither rhyme nor reason for the problem. There was only the certainty that I was just going to keep having "accident" after "accident". My parents tried everything. We saw pediatricians. We saw gastro- intestinal 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 diagnosis 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 than all of these combined was the dreaded class trip. A journey into the unknown with a busload of children armed with their cruel words, pointed fingers and laughter directed at my embarrassment. The only thing I could arm myself with was a pack of 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 anywhere I was unfamiliar with, but this was almost as embarrassing for me as having an "accident" and it was frustrating for both my parents and I.

The curtain of hope began to rise when I was 10 years old. Something peculiar was beginning to happen 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 some strange shooting pains began to develop 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, Brock Masters, had Spina Bifida. This by no means was a welcomed addition to my life. Children with Spinal Bifida generally have a long and painful road ahead into adulthood. But at least there was now an explan- ation for my childhood affliction – my bowel troubles were not my fault. I could breath with ease about the past only to hold my breath about the 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 with the intent of allowing them to develop in a normal fashion. It took the doctors and nursing staff 12 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, it was determined that this was not the end of my medical journey but truly only the beginning.

As the years passed, the operations continued and the neuro- logical problems worsened. I experienced a complete loss of bladder function, atrophy of my calves, hamstrings, gluteus, as well as the continuing worsening of my gastrointestinal neurology. I required multiple back surgeries, multiple foot reconstructions, full toe fusions, foot and toe-pin insertions and removals, extensions of my heel tendons, an experimental cecostomy (at the time, I was the oldest person to ever receive the procedure) and somehow the problems continued to worsen.

Some Information About Cecostomies

A cecostomy is a catheter that is inserted into the cecum, which is the first part of the large bowel, and is located within the right lower quadrant of the abdomen. The natural passage of food is into the mouth, through the stomach and small intes- tines into the cecum, then through the rest of the large bowel, into the rectum and out the anus.

Placement of a cecostomy tube is a procedure involving insertion of a cecostomy catheter (C-tube) into the person's cecum through a single puncture into the skin.

Since a cecostomy is inserted into the first part of the large bowel, people who have trouble "holding their bowels" can use the cecostomy to administer a small-volume phosphate enema followed by a saline enema to completely evacuate and cleanse the large intestine, emptying through the anal opening. In this way, potentially embarrassing accidents can be avoided.

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 (my cousin was diagnosed with terminal brain cancer at the age of 6 and is a survivor): "Too many people utter the words 'why me' when what they should really be saying is ‘why not me'". And you know what? She was right. If there is only one thing I can say that I know for certain in this world, it is this: disease and personal tragedy will never discri- minate. It doesn't matter what class, creed, race or gender you are. And if it finds you, you will either take it into your life and allow it to help you grow and become more aware and appreciative of what you do have, or it will shatter your soul and turn you into a bitter shell of a human being who cannot appreciate any part of what they have left.

With this as my frame of mind, I chose to push forward with what I did have. For the latter part of my teen years I enjoyed volunteering with the Spina Bifida Association in Ottawa. I helped out with friends at the local soup kitchen when I could, and I looked into opportunities 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, nor was it a shot put or a lance. My personal legacy was built from aerospace aluminum, rubber and carbon fiber. Some of my fondest memories are of the time I spent pushing track wheel- chairs. Within three years, I had reached a national level of competition, had set five state records down South, qualified for both the American and Canadian National Meets and had visions of competing in the Para Olympics.

Some people found it difficult to conceive how I could take so much joy from a sport that required so much loss to be a parti- cipant, but I never saw it that way. I viewed the sport as an oppor- tunity to educate the able-bodied community – to show them not only can someone in a chair excel in competitive sport and fitness, but when I would remove my track pants, unravel my race suit, and walk to my chair on what appeared to be twigs in relation to the rest of my physique, I showed people how disease and disability are not always apparent to the uninformed onlooker. They can affect many people in many ways, some which are not always obvious. I would try to explain the importance of under- standing and accepting what they saw as a "disability" or a "personal set back" as what those individuals would simply consider their normal life circumstances.

In the fall of 1999, I faced another personal hurdle. It was strongly suggested by my neurologist that I cease my racing activities. The constant strain competitive racing was placing on my spinal cord was causing small micro tears and instigating further nerve damage. These circumstances required another operation, how- ever, this time the stakes had been raised. If I did not have the surgery, I faced almost certain confinement to a wheelchair within five years. If I chose to go ahead with the surgery, there was a 65%–75% chance of complete paralysis of my lower body due to the complicated nature of the operation.

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 to urinate and flush my digestive track (cecum ostomy) via a long and painful flushing procedure that had been put in place several years previous. 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 what had been an unforgettable experience, I came to the personal realization that although my trip had been a success, I was still suffering from the constraints of an unpre- dictable digestive track and it was time to look into what to me at the time was the one thing I feared most ... a colostomy.

Having had to give up snowboarding many years previously due to my leg problems and the fear of an "accident" on the hill, 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 in public settings without worry, no longer constantly on the paranoid 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 (having had some interesting encounters). 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 uncom- fortable 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. Let's face it, confidence in yourself is an essential ele- ment in starting, returning to, or maintaining 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 began to feel some discouragement after receiving several letters informing me that they appreciated my efforts but regrettably 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 us to forge 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, which is a company for "people with ostomies" founded by an individual with an ostomy. I truly believe that we are "people with ostomies" and no longer "ostomy patients". I want to see "ostomy products" in the market place, not "medical appliances". We have faced our challenges, had our surgeries and conquered and overcome more adversity than many people will see in a lifetime. I can stand proud when I say I have an ostomy, and even more so now that I am privileged to be part of the UOAC, a group of people who are dedicated to the encouragement, enrichment, and emotional fulfillment of those faced with either having had an ostomy, or needing guidance before having one.

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. If only everyone in this world would lend the support and the helping hand that the members of this organization have given me, I know we would all have a better understanding of what humanity is truly capable of.

I also hope that my personal story will inspire those of you who are facing or have already had ostomy surgery. Never let your ostomy hold you back and always live life to its fullest.

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