Back in March, I meant to introduce you to Jesse.
Jesse is a friend of mine from high school. We were good friends at the time. He taught me how to play trombone at our evening music classes. (Our high school in Iqaluit was so small, there was no time during the day for a regular music program, so we had to do it at night.) At 6′ 6″ (or thereabouts), he towered over me, and could slide his trombone slide right off, which always made me giggle. He wrote stories and poetry and we had awkward moments because he had a crush on me and I was already someone else’s girlfriend. But he was too sweet to let that get in the way.
He was a year ahead of me at school and when I started Grade 12 (my last year of high school), I lost touch with him. He and his mom, who was my favourite English teacher ever, had left Iqaluit over the summer. Although I tried, I was never able to find an address for them.
Last year we reconnected through the magic that is Facebook. I was shocked to learn that the summer after he left town, he’d started having seizures. And he’d been living with epilepsy ever since.
So last March, which is epilepsy awareness month in Canada, I was thinking of doing a series of educational but light-hearted posts about epilepsy. I was thinking about interviewing Jesse and writing his story here, to let you meet a real person living with what many of us call The Beast.
I’m sorry that I only thought about doing it and never got around to actually doing it. Because today, I learned that Jesse died on Monday.
I don’t know exactly what happened, and I don’t want to add to the family’s pain by asking. All I know is that his status message on Facebook, posted by his mother and sister, says: “…after years of living bravely with epilepsy, Jesse is finally free. He passed away on November first.”
When Jesse told me last year about his 16-year battle with epilepsy, he told me that he was just about at the four-year mark of having gained control. (I will share his own words with you another day.) He had gained enough control to pursue a career in Heritage Carpentry (which includes stuff like restoring all the fine details on old houses) and just this year started his apprenticeship. But the seizure control started to slip. He had a seizure in September that tumbled him down the stairs. Or maybe his seizure control didn’t slip. Maybe “control” for him meant “they hardly ever happen anymore”. I don’t know. I’m angry at myself that I didn’t ask the questions.
I can’t even put into words what I feel. There is certainly anger. He was just a few years older than me and his death is just so unfair. Why do we still lose people to epilepsy? Why are so few resources dedicated to eradicating it? Curing it?
My heart breaks for his mother. He suggested in an online exchange once that his mother and I have a connection because we are both mothers of children with epilepsy. But I feel like a fraud somehow because despite all the terrible times we’ve had with Jade’s epilepsy, having a grown son fighting seizures seems like a different thing altogether. And I feel like a fraud because when I posted on my Facebook status that I’d lost a friend to epilepsy, I was offered condolences, and I think, oh no! I’ve lost a friend, but his mother! His sister! I don’t deserve any sympathy. I feel — not guilty, exactly, but I don’t know what word could be better… just bad and wrong that we seem to have Jade’s seizures under control (OMGtouchwood)(andpray) but Jesse’s mother has now lost her son. His sister has lost her brother. His baby nephew has lost his uncle.
Jesse was hard-working and he was thoughtful. He had a goofy sense of humour. I wish I could have seen him in person again. So many wishes. I hope, I hope, wherever he is, that he truly does feel free.