In Memory of Sydney: A Personal Story about Volunteering with the EAC.

"The courage and bravery that those with epilepsy have shown has infused me with the strength and willingness to change myself".

My sister Sydney passed away from epilepsy after having a seizure in the bathtub of our family home over 23 years ago. Today is her birthday and I wanted to write an article for the Epilepsy Association of Calgary as a tribute to her while expressing how deep an impact the Epilepsy Association has had on my life and the importance of it's existence.

Sydney was a boisterous, care-free, happy girl with a rare sensitivity about the world that most 16 year olds are not wise enough to have. She could make anyone smile with her infectious and outgoing personality. I still remember the last words she said to me before we lost her on that fateful day in December 1988. I was trying out for the school Christmas play for the part of 'Joseph' and as I anxiously and expectantly bounded down the stairs and out the front door I heard her yell out from the bathroom "Good luck Bear, break a leg." "Thanks Syd", I replied.

It was shortly after arriving at school that I was called to the principal's office. My first thought was that I was in trouble since the better part of my elementary school days were spent with my not-by-choice best friend, The Principal! When I arrived in the office I was told that I was being picked up by my neighbor and that there was a problem at home. At that moment I knew that something was terribly wrong. I remember the feeling because it occurred to me later on in life that it wasn’t normal for a young boy of 10 to feel such dread.

After Sydney passed away I became a very angry and troubled soul, lashing out at anyone that I could find to blame for her untimely death. I took most of my frustration out on the hockey rink where I excelled as an athlete. I hit everything in sight and nothing was going to stand in the way of me scoring a goal. I spent most of my time in and out of the principal's office and I didn't care what anyone thought of my behavior and attitude. Most of the time I just wanted to be left alone and would resign myself to playing video games to distract myself from the hurt.

Unfortunately, having not adequately dealt with the anger, confusion, and guilt that came with her passing, my troubles boiled over into my late teens and early twenties. Instead of video games though, it became more dangerous distractions like drugs, alcohol, and gambling. Anytime I felt alone or isolated I took to these vices in a pseudo attempt to mask my deep pain.

I moved to Calgary in September 2010 for various reasons but mostly to finally take control of my life and to face the demons that had slowly crept in and plagued me over the years. I put myself into addiction recovery for compulsive gambling, I sought out to speak with a therapist to deal with the emotions caused by all the years of denial, and I vowed to give back to a cause that has had a deep impact on my life.

I walked into the Epilepsy Association of Calgary in November with a sense of trepidation and nervousness. It isn’t everyday that one is given the opportunity to confront his demons and give back to a cause that has had a hugely emotional impact on his life. After speaking with the Volunteer Coordinator, I knew that I was in the right place. I learned about EAC poster twins, Chloe and Lainey, and how they performed a tandem dance routine despite a seizure during the routine. Their bravery inspired me to want to give as much time in my busy schedule as possible to the association.

Two weeks ago the Epilepsy Association of Calgary’s held their Charity Casino Night. I took the train from where I live in Tuscany an hour and a half to the Blackfoot Trail Cash Casino. Most of this year has been spent battling my demons and trying to get back on track, so this was a hugely important and cathartic night for me. It was the first time since November 10, 2010 that I had been in a casino and I was anxious beyond belief. I was greeted by one of the volunteers and escorted into the counting room through the vaulted door. With my knapsack in hand I felt a sense of comfort that the association trusted me to be there to count thousands of dollars. In all my years of gambling I never once stole anything from anyone to facilitate my problem but I always had a sense of guilt that no one would ever trust me, mostly because I didn’t trust myself.

Leaving the casino when I arrived at home I broke down and cried. I felt such a sense of salvation and resolution that the emotions overcame me. It was as though the weight of years of guilt, fear, and anxiety had been lifted. In a pure moment of exultation and freedom I fell to my knees and cried out “I won, God I finally won!”

The Epilepsy Association of Calgary not only raises money and awareness for an often misunderstood condition, but also helps others to confront their own fears. The courage and bravery that those with epilepsy have shown has infused me with the strength and willingness to change myself. I admire and am inspired by everyone involved with the association and I hope to continue to contribute in the future as much as I can.

Those of you who are struggling with epilepsy are all winners in my mind. I admire all of you, for your strength to battle the fear of not knowing what each day with epilepsy will bring. It helped inspire me to find reason to change myself. Epilepsy not only affects the people struggling with it but also their families and friends. You are truly not alone in this fight. Happy Birthday Sydney!

All of my love,
Your brother - September 22, 2011.

All of the staff at EAC were deeply moved by the heartfelt story shared by this "little brother". It is a poignant and touching reminder that many people are affected when someone close to them lives with epilepsy. We extend our sincere thanks to this 'brother' for having the courage to share his story with us and wish him continued success in his journey of healing.