Going back to waking up from that first seizure, to realizing that the fade in time and existence that I had felt was actually part of a disorder and not a natural experience, I knew that my life was changing whether I wanted it to or not.
Undoubtedly change is a variable thing, moving at a snail’s pace on moment but zooming like a bullet the next, yet what is a boy moving into Grade 8 supposed to do about it? Surely he might feel crushed at knowing that due to his partiality to light (photosensitive epilepsy), he will never be able to treat many activities or scenarios the same as his friends, that he will be forever stigmatized by others and possibly himself. Naturally, he should then be treated with more care and caution, watched over and placed under more restrictions for protection.
This, however, was not the case. While I did experience sadness and alienation from myself and others at times, I decided shortly after the shock that I would not let this control me. My life was just beginning in many ways; I was entering high school and becoming more interested in balancing a social life with my extra-curricular activities and academics. I began to realize what was unfair, and while the knowledge was harsh, it taught me to appreciate what I had and what I could do. It did not, however, cause me to depreciate my condition, but rather to empathize more with others, because even if they did not experience things through the same medium, they often felt the same as I did.
In order to keep empathizing with others during high school I started by joining several school groups such as student council, peer mediation and the rugby team. I also took opportunities to just get out of the house and enjoy time with my friends. I found this to be especially important as it allowed me to foster friendships with others in a normal setting rather than as part of an organization. Spending time with friends helped keep my mind off of what people thought about my epilepsy, and by being responsible about it, I eventually put worry to rest altogether. I have had many people ask me about what it is like to not be normal, to have to watch over and limit myself, to which I have always had one simple reply – I am normal. None of the things I do are abnormal or strange in any manner, but rather just a way of living.
Alongside fun, though, there was always a measure of discipline and focus that kept me on track with my educational goals. I have always wanted to become a doctor later on in life so that I could continue to help people with their medical issues. While epilepsy has complicated this dream of mine somewhat, it has also, in a surprising number of ways, helped it. The condition has fed my interest in the sciences and kept me studying hard so that one day I could join those who maintain the health of society.
When epilepsy had utterly cut me off from doing something, I learned to turn the situation on its head and, instead, devote more time to improving other aspects, such as mental sharpness or physical fitness. To dwell on what you cannot do is to live in neutral. I owe this strategy of refocusing and remaining vigilant to my entire immediate family who, through the years and through their own medical conditions, have shown nothing but fortitude and adaptation.
Finally, one of the major strategies that I have used over the years to live with epilepsy is to learn more about it. I found that in spite of what I had been taught from my mother, who also lives with epilepsy, and my neurologist Dr. Bruni, I could not satiate my need to know more about it. At the same time I was often asked to answer questions about epilepsy from numerous people about topics I never even thought of. With an ongoing torrent of new ideas flowing through my head, I made it my personal mission to learn whatever I could about epilepsy.
While this initiative was never taken to the level of forming a campaign, it has always been a point of mine to dispel and ignorance surrounding epilepsy and to teach others what I know to the best of my ability. In doing so I felt that I had made a difference, whether in the world or in the life of a single individual, and furthered the cause to be empathetic towards one another.
I have always been taught that every problem is a gift in disguise. It is up to us to gather the courage and the willingness to find the often deeply buried treasure. I feel epilepsy is a gift. It has opened my eyes and heart to the suffering of others, shown me the courage it takes to overcome obstacles, the perseverance needed to reach goals and, mostly, the gratitude knowing that I have the right to choose how I will react to my situation. Epilepsy has opened a vehicle of communication to reach, teach and help others.
I have met youths my age too embarrassed and frightened to talk about their epilepsy. Through emails and phone calls, I have quietly helped strangers not to feel alienated and alone. Every suffering person must find meaning through their suffering, and everybody has value. Epilepsy has become a metaphor for my life. It has taught me to appreciate every blessing today. My influence on my community towards epilepsy awareness has been a quiet, deep and profound one. Each person I have opened up to, exposed my vulnerabilities to, has, in return, given me so much more. We have connected through each other’s suffering and emerged stronger, more hopeful and more grateful for the experience. Isn’t that what life is all about?
Writer: Alex Dolan (2007 OBCL epilepsy scholarship recipient)
Published: Fall 2007 in Sharing newsletter