This is the story of how I came to be the face of the Canadian Continence Foundation.
Let me start from the beginning. I was born with a high imperforate anus, which, as many of you know, means I was born without the actual anal opening. Doctors had to create the anal opening for me at birth.
I was also born without a sphincter muscle. This condition has created a number of challenges for me over the years including relentless bullying, shame, embarrassment, anxiety issues, depression, failed relationships, and anger issues. However, with an amazing support group around me, I was able to overcome all of these things and enjoy a wonderful life.
I did not really know I was any different from any other child until I started attending school. As I progressed through elementary school, my condition was, at times, noticeable to the other students. I was bullied relentlessly. I was called names, beaten up, shamed, ridiculed and felt like a complete outcast. My “incidents”, or accidents as we called them in our household, became more apparent to the other kids as time went on. I wore diapers until the age of 13! Imagine trying to conceal that every day before and after gym class.
Getting back to the amazing support group I had, I cannot stress enough of how important that is. I actually feel fortunate that I was born with incontinence instead of having to face it later in life, as it has always been my normal. It made it easier for me to talk to my family and health professionals about it, but not everyone is like me. People who become incontinent later in life find it very overwhelming and are reluctant to share the news with family or even their doctor. This situation creates a number of issues including isolation. A lot of focus remains on the physical condition, as it should, but not enough focus is being placed on the mental issues that can arise.
When people begin isolating themselves because of their condition, it can lead to many mental health issues including anxiety, panic attacks and depression. These are three mental health issues I continue to struggle with. We need to make a strong effort to normalize it so that people do not feel the need to isolate themselves. Loneliness is being described as “the hidden epidemic,” according to the Red Cross. Britain became the first nation in January 2019 to name a “Minister of Loneliness,” amid studies revealing that roughly 10 percent of all Brits regularly feel isolated. Now, people are feeling isolated for many reasons of course, but I relate it to incontinence because I have heard too many stories of people who have not left their homes in months, sometimes years. One woman who reached out to me told me she had not left her home in 28 years except to get groceries and attend appointments.
I can tell you that I felt alone many times, and I had an incredibly large group of family and friends supporting me. I felt alone because there was nobody like me.
I had never, in over 40 years, heard about or spoken to someone else suffering from incontinence until I went public with my own story. When I made that decision to go public, I also decided that it was important for me to be completely honest in how I shared my story.
My mom was always there for me after a difficult day at school. There were occasions when I would come home at lunch after being beat up or ridiculed and my mom would take me back to school and report the incident to a member of the staff. She would share the names of the kids and at times, would even speak to their parents. I am not sure what I would have done without Mom’s support. My mom took on the role of Super-Mom and did her best to protect me from the bullying.
Dad’s role was just as important. My dad was always available no matter the situation. If I had an accident at school, which happened on quite a few occasions over the years, Dad would drop everything to come and pick me up at school. He had a pretty high profile job as a senior partner at an accounting firm. He could be in a meeting with a multi-million dollar client and when I called, he would quickly explain to his client that he had to leave due to a minor family emergency.
I mentioned those accidents earlier, and it really does not do it justice. I would have diarrhea so bad that I would have to tuck my pants into my socks to avoid it spilling onto the floor. There were no cellphones when I was young, so I would always have change on me to use the pay phone or I would sneak into the nurse’s office at school to make the call. My code words were simple, “Hi Dad, it’s me, I’ve had an accident.” Dad would show up with garbage bags to cover the seat and we would often cut two holes in the garbage bag so I could slide it on.
My schooling suffered a great deal and I think a big part of that is because I was consumed with my incontinence. I thought about it constantly. I was so obsessed with making sure nobody found out that I am sure I missed about 50% of what was said in class. My grades were always poor unless it was a subject I was interested in.
In high school, I was faced with a big challenge because of my incontinence, and that was intimacy. I was at the age where I began to yearn for a girlfriend. As I started to get comfortable talking to girls in high school, my anxiety got the best of me. I would suffer from horrible panic attacks the closer I got to an intimate relationship. I was dead-set on not sharing my condition and I would do anything to avoid it. I thought every girl would find me disgusting. I had a few girlfriends over my high school years but as soon as we began to get intimate, I either distanced myself from them so much that they lost interest, or I would just stop seeing them without any explanation.
My late teens and early 20s were my darkest times. I had many struggles, including self-medicating with drugs and alcohol. I fell into a deep depression without even realizing it. I had worked so hard mentally over the years to be happy no matter my circumstances that I was fooling myself. I was so depressed at one point, that I considered taking my own life. I had it planned for one night, alone in my bedroom. I was sharing an apartment with my best friend Gary at the time. I was upset and scared and in the moments leading up to my suicide attempt, I started thinking about all the great people I had around me, the incredible support group that had lifted me up all these years. I realized I was truly unhappy, seriously depressed and that it was okay. I put so much focus on challenging myself mentally to be happy that I had not accepted the fact I was unhappy, that I had fallen into this deep depression.
I had to accept that and focus on my support system. Life is not just about you. There are people in your life that have invested a lot of time and love into you.
I asked myself: What effect will it have on my family and friends if I do not wake up tomorrow? What effect will it have on my best friend, who is sleeping in the room down the hall? How will it affect Gary’s life when he walks into my room tomorrow to find me dead without an explanation? What will it do to the lives of the people I love? Those thoughts saved me from taking my own life.
How did I overcome some of the challenges over the years? I asked myself, What if I started to tell more people, friends, acquaintances, and colleagues? What would their reactions be? Would they treat me as an outcast? I found out it was the complete opposite. I went public about my incontinence on live TV in Ottawa, Canada, when I was host of a daily talk show called Daytime Ottawa. One of my guests on the show was the executive director of the Canadian Continence Foundation, Jacky Cahill. She was in the green room before the show and in passing, I mentioned to her that I have suffered from chronic fecal incontinence since birth. She asked if I would be willing to share that during our segment and I said, “Sure.” I felt the timing was right for me to go public. So, I shared it live on the show and followed that up by posting my story on social media. The feedback and support from people was overwhelming. Only a couple of weeks after I went public, Jacky reached out to me and asked if I would be interested in becoming the champion and ambassador for the Canadian Continence Foundation. I accepted immediately. I didn’t even run it by my wife.
I am truly grateful that I have this medical condition. It has shaped the person I’ve become. I am more vulnerable, more caring. It has made me a better husband, parent, friend, colleague, TV host. It has also allowed me to appreciate intimacy more. When my wife touches me, it feels magical each time, because I had yearned for love and intimacy for so long.
What is my goal in sharing my story? I would like all of us to have a better understanding and more empathy for those suffering from any number of challenges. Be sure you are telling your family, friends and colleagues about your mental or physical illness. You will be understood, supported and loved, and if you do not feel it from them, please reach out to an organization that can help. There are resources available.
I would like to end off by sharing a quote. It is a quote that has been attributed to a number of people over the years, but most believe Carl Beuhner was the first. “People may not remember exactly what you did, or what you said, but they will remember how you made them feel.” Make people feel good in your life.