04/13/2014 05:30 EDT | Updated 06/13/2014 05:59 EDT

Epilepsy Ottawa: Through the Eye of a Volunteer

By: C. Shane Gracey. Shane is a happy, fulfilled and proud volunteer with Epilepsy Ottawa Épilepsie.

Can you imagine suddenly waking up in the middle of the street or at your place of work with no idea how you got there? Can you imagine losing your job or people avoiding you because they're scared of you? These are some of the experiences described to me as a volunteer Administration and Support Co-ordinator at Epilepsy Ottawa. When I started working there, I was immediately impressed by our clients' resiliency and bravery; and at the same time I was horrified by their stories of violent seizures, bitten lips, broken teeth and bruised egos. What had I gotten myself into?

I became involved with Epilepsy Ottawa (EO) through luck and happenstance. I had applied to a Masters of Social Work program that required some volunteering experience. I inquired into several organizations, and EO was the first to reply and invite me for an interview. I immediately connected with the board members and knew they were desperate for volunteers, so I readily accepted their offer.

The first few weeks were a whirlwind of information about epilepsy. I didn't know much about it beyond the fact that it has to do with seizures. I don't have epilepsy, nor did I personally know anyone who had. Now, of course, that's changed and I have many good friends who have epilepsy. I have come to understand that epilepsy affects people from all walks of life, from all economic and social backgrounds and despite its unpredictability it doesn't prevent people from living regular, full lives.

When I started volunteering, I had no idea that epilepsy is one of the most common, chronic neurological disorders and can affect anyone, at any time. I was shocked to learn that it can be caused by many things such as genetics, head injury, infections, strokes or substance abuse. It's a condition that causes misunderstanding and fear in many people simply because there is not enough awareness and education. That's one of the reasons why I continue to volunteer with Epilepsy Ottawa; society in general knows little about this condition.

As a new volunteer I was nervous because I wanted to do a good job, yet I lacked confidence because I had little knowledge and no personal connection to the condition. At times volunteering felt overwhelming and daunting; I could never finish everything that was on my to-do list and I often felt I did not readily have the answers. However, I knew that I was an important connection for people living with epilepsy and offered the support they needed to advocate for themselves in their communities, at work or at school.

Since I started volunteering, I've helped clients connect with neurologists -- finding a good one is difficult, especially if you are dealing with seizures that leave you exhausted for hours. I've helped clients find special sunglasses that protect their eyes from fluorescent or blinking lights, which can trigger seizures in some people. Sometimes I just listened to peoples' stories.

The people that I help make volunteering worthwhile. I am always happy when I can meet one of our clients face-to-face after having helped them on the phone or over email. I learn about them as people, not just about their epilepsy; I hear about their families, their hopes, dreams and fears. This often feels just as important as helping them find a doctor or referring them to a community service. This is my favourite part of volunteering, and the most satisfying; being able to emotionally connect with people and give them hope.

Over a year has passed by since I started volunteering. I've learned a great deal about the negative effects of epilepsy on people's lives and, conversely, I've heard many, many success stories. I've met many wonderful people who've shared their inspiring life stories over coffee, at Public Information Meetings, at bowling socials, or in the office. I've met mothers with epilepsy successfully raising their children on their own and newly landed immigrants struggling to navigate Canada's medical world while dealing with seizures.

On March 29 we celebrated Purple Day at Ottawa's City Hall with Cassidy Megan (the founder of Purple Day), the mayor of Ottawa, and many friends and family connected to our organization. It was another example of why I volunteer with Epilepsy Ottawa. We came together to raise epilepsy awareness and help those affected by this condition. The more we spread understanding of epilepsy, the less it will be misunderstood and feared.

Volunteers are the lifeblood of any epilepsy organization and they are urgently needed as most of these agencies do not have sustained government funding and are understaffed. Epilepsy Ottawa is run completely by volunteers. We have four volunteer office staff that offer help to new and ongoing clients, as well as several volunteers working on initiatives such as fundraising, education, and support groups. Only a couple of hours a week can make a HUGE difference to a person in need. I see that need every time I volunteer.

Connect with your local epilepsy organization through Epilepsy Ontario to see how you can volunteer and help people affected by epilepsy.

Check out Epilepsy Ottawa Épilepsie at:, LIKE us on Facebook or FOLLOW us on Twitter.


Photo galleryCURE Epilepsy Event 2012 See Gallery