A Long, Long Ago Prediction That Was Wrong (Thank Goodness)

Today, I want to tell you something about myself that I’ve never spoken about to anyone that I can recall. It starts off a little bleak. Then it becomes tremendously positive and victorious. Come along, won’t you?

From grade two onward, I missed the end-of-year party at my elementary school. Do they still have them in schools today? The last day of class before summer was a big deal. In the morning, teachers would try to get us to learn a little something. But after noon, it was weakly mixed Freshie, cookies and general reverie about the summer to come.

I especially remember how painful it was to miss the end of grade six. My homeroom teacher’s family owned a farm and a hugely successful produce and bakery market. The whole class was going to explore the farm and pick out our favourite treats at the shop. I recall how devastated I was when my parents told me I couldn’t go.

The reason I missed out on fun and fellowship with my fellow students was because I had seizures. Every year around the same time, I was admitted to Toronto’s Hospital for Sick Children. Every year, I underwent the same series of tests. I had no idea that I was a guinea pig back then. But how else are they going to learn about these conditions?

The Lab Rat Experience

I remember having my brain waves analyzed with an EEG (electroencephalogram), undergoing various scans, and having lots of blood taken. I recall crying because the nurse would squeeze my little fingers hard to try to get enough of a sample. They squished me dry for what seemed like dozens of vials of blood.

My Sick Kids pediatrician was blunt. One day in the exam room, he laid it all out for me. I must have been eight or nine years old.

“You’re not going to be like other kids. You’ll never drive a car. You probably won’t live on your own. Hopefully, you’ll get a job. But I don’t want you to have a lot of expectations for your life.”

I cried, of course. I had good marks in school, friends, I was a polite and conscientious kid. But this doctor seemed to think I was destined to have a limited future because of my seizures. I simply couldn’t believe him and thankfully, neither did my parents. (I only realize that in hindsight.) But it always played in the back of my mind. “You won’t be like the other kids.” He was wrong, but it’s not his fault. He was working with the best knowledge at the time.

More is now known about epilepsy and seizure disorders. There was a time when disclosing epilepsy did indeed mean you were unemployable. Ignorance was anything but bliss. Fear ruled the bottom line. (And I realize that in many cases it still does.)

A Change in Diagnosis 55 Years Later

Of course, many people with epilepsy disorders live mostly regular lives. Others are terribly debilitated by severe forms of the condition. In the 1960s and 70s, epilepsy was thought to be all one thing. If you had it, this was your life and it was black or white.

I recently met with an ENT (ear, nose and throat doctor) after a half-day of testing at London’s University Hospital. This was prompted by the balance issues that plagued me last year. In going over my health history, I always disclose that I’m epileptic, as the doctor at Sick Kids diagnosed me long ago. After discussing everything with the neurologist, he told me – this many years later – doctors were wrong. I actually had a common, milder form of childhood epilepsy, Benign Rolandic Epilepsy, and it’s much more common than I thought.

The neurologist’s son has the same disorder. It starts young. I was an infant when I had my first seizure and scared my parents half to death. The episodes tended to arrive at bedtime or first thing in the morning, also typical of this condition. Facial paralysis was the worst part. I have many vivid memories of being trapped in my own body, unable to call for help. My parents would find me and rush me to the ER for an injection of – I have no idea. Typically I fell asleep.

Eventually, a prescription drug drastically cut down on the number of seizures. I had my last episode around the age of 16 and that’s when the best outcome occured – I seemingly grew out of it. But there was always the potential that it might return. Just a few years ago the “warning” symptoms started up again occasionally. There’s no rhyme or reason to that. Everybody has their challenges in life and this one is pretty small. But no one’s worried that it means much to my health or that seizures will return.

Not A Life Sentence

I thought about the good doctor’s prediction many times over the years: When I won an award for my proficiency in French. As I got my driver’s license on the first try. When Niagara College accepted me. As the landlord handed me keys to my first apartment. I was meant to take what he said to heart but I never did. He thought he was saving me a world of hurt. Medical science came to learn that there are many forms of epilepsy. I was so lucky the one I got wasn’t as serious as others.

I don’t know what the lesson is. Reach for your potential despite what others say? I’m not sure. Every situation is a little different. But I’m grateful to my parents for not choosing to limit me because of what we were told about my health.

I will always bristle when someone describes an epileptic patient as “having a fit.” (Please don’t.) When I was little, teachers would discuss shoving a spoon in my mouth so I wouldn’t swallow my tongue. (NOT necessary and likely harmful!) It’s true that I’m not “like the other kids” but for reasons I’m proud of or simply accept. (I think I’m a delightful little weirdo!) My life would have turned out much differently if that pediatrician had been right. Now I can simply tell a doctor that, “I had Benign Rolandic Epilepsy”, and know that it’s over.

Learn more about epilepsy and its various forms here: Epilepsy Toronto.