From time to time, I have the opportunity to look at an old school photograph. You know, the kind with the entire grade two class in their “good” clothes, hair combed, feet tucked neatly under chairs. And of course, sporting all possible facial expressions, from smiles to jack-o-lantern style grimaces, resulting from some earnest photographer’s attempt at getting a good picture of a bunch of lively seven-year-olds.

When I zero in on myself, I look really hard to see what I can see, beyond the plaid skirt, pigtails, perfect posture, and compliant little closed-lipped smile. I try to see if I can detect a difference, something that will betray an underlying reality, the internal personal life of a child set apart from the others. I can’t see it. There is, however, a certain knowing-ness in her eyes—a sense that this picture-taking business is really no big deal.  In fact, I know, looking at the 35 year-old photo, that at any moment all Hell could break loose for that little girl. And everything could change dramatically for everyone in the picture.

At the age of six, I began to have epileptic seizures. I was diagnosed with temporal-lobe focal epilepsy. That basically describes how my seizures were different than the more familiar grand-mal and petit-mal types. When they began, I called my seizures “arm-aches” because for me, at the age of 6, that’s what they were. They began as a pain in my left arm, and then progressed to general seizure symptoms. I became stiff and lost motor control. If I was standing I fell. I drooled. I made weird noises. I looked strange, and I imagine scary, to other children. Although I could not speak, I never lost consciousness. I was always painfully aware of what was going on around me, even when I was six. I’ve been slapped, shaken, had Popsicle sticks jammed in my mouth. I have witnessed some pretty intense panic and recall being strangely disturbed because I was unable to provide reassurance to onlookers.

As a child, I described my seizures as electricity in my body—the only way, even today, I can come close to helping someone else understand what it was like. If you have ever received a mild electric shock, imagine it prolonged and throbbing through your body for about 30 seconds. That’s how it felt. It was painful, certainly more painful than anything else I have experienced in my life, except maybe childbirth. But pain is funny. When you know it, its limits, its character, you sort of just accept it—it becomes part of your internal life. The physical pain was never the part that bothered me most.

For whatever reason, there were times, particularly during my adolescence, when I had more than 10 seizures a day. During the week, four or five of those a day could happen at school. I got very creative at using my body’s momentum to carry myself and my books while seizing to a wall, or table to prevent falling. The most difficult part of being epileptic for me was the humiliation I faced too frequently as a result of having seizures in public, especially at school. I had a seizure once in the middle of an intersection where I fell off my bike and ground my face into the pavement. I can remember how relieved I was, when I came out of it, that I was alone. The fact that I could have been killed didn’t occur to me. I would have gladly traded 50 seizures at home for one in public.

Yet, my life was surprisingly normal, except maybe for the fact that I was involved in more activities than the average kid. I took swimming lessons, sang in choirs, competed in provincial piano festivals, figure skated, skied downhill, performed in ballet recitals, acted in school plays, was a cheerleader, and I belonged to a youth group (where I was going when I fell off my bike). And whatever I did, I did well. I excelled.

I never saw my epilepsy as having anything to do with my potential to pursue opportunities, succeed in life, and enjoy it. I’m pretty sure I have my parents to thank for that. They must have feared that I would define myself by my epilepsy, and therefore limit myself—and they were determined not to let that happen.

Of course there were things I could not do. For instance, I couldn’t drive at the age of 16 like my friends. I couldn’t give blood, because of the medication I was on, and couldn’t apply to Nursing at college. I was often tired, and I am quite sure my medications affected my memory, both of which had implications for me at school. But I can’t think of a restriction that ever caused me any real grief. I faced challenges all the time—not letting them hold me up became a way of life. Actually, it still is. And as a Guidance Counsellor, I am obsessed with the struggles in other peoples’ lives.

I have been seizure free for 27 years now. But having epilepsy shaped who I am in some important ways—it has had a lot to do with who I am today. I do have scars—I am threatened when I feel I am not in control, which drives my husband crazy. I have a morbid fear of humiliation and embarrassment. I experienced a major victory recently when my children gave me my first wedgie. I survived it! I even laughed. Now I’m learning to fart in front of them.

Oddly enough, one of my favorite things to do is speak in public. It is exciting and energizing. In fact, I approach most situations with a feeling of confidence—there is little I feel I cannot handle. Which can be a liability at times, because of course there are things I can’t handle. It is the ability to detect what those things are that I seem to lack. Sometimes this comes across as superhero-like courage. Sometimes it affects my judgment. The Principal at the school where I work has learned to roll his eyes at my unrealistic expectations. I believe it has made me a good role model for my kids who are still comfortable with reaching for the stars.

She believed she could reach for the stars too, that little girl in the photo. She didn’t really know the difference between her reality and others’. She never felt sorry for herself. She just kept moving forward. But as I look at her now, I just wish I could give her an extra hug, encouragement, a break now and then, just to ease things a little. With character, she did a great job of getting through it all and turning her challenges into opportunities. If I could do anything, I would teach her to let go, relax. I would show her what it is like not to be in the eye of the storm for a change, and to let life happen around her sometimes. She’s earned it!

Karen Nesbitt is a Guidance Counsellor in Montreal, Québec.