Epileptosaur

This is the most difficult post to write so far. Some of you have commented on my previous posts that you appreciate how candid and honest I am about how I feel, but this one cuts deep. Last night I was relating this story to a friend and I was embarrassed even to say the words out loud. Earlier in the day I couldn't say them without crying. But first, some background:

Over the past year and a half I have been getting to know other people with temporal lobe epilepsy through a facebook group. Some of them have talked about how they have faced discrimination from peers, employers, and even family members because of their epilepsy. For some of them, their illness has been a lifelong battle. Seizures in childhood can cause learning disabilities and developmental disabilities, which of course can then lead to social difficulties and anxieties. There is often bullying involved and social isolation. Like other disabilities, people with severe epilepsy may not be able to keep jobs or finish school, and they often face discrimination.

In that way I've been very lucky, because mine started late in life, was caught and treated early, and has been mild. I never had any learning problems growing up and even though I'm still building my business, I'm established in my life. Aside from being temporarily unable to drive and having to take some down time from work, this illness hasn't interfered too dramatically with my life. I haven't really thought of it as a "disability", though technically I could.

And then on Tuesday, something happened that dramatically shifted something inside of me.

Someone who had witnessed one of my generalized seizures, months ago, was angry at me on Tuesday morning.

I won't go into details, but he was angry and feeling powerless. And (as a witness wisely observed) because he was angry at me and feeling powerless, he picked on a moment in which I had been literally powerless--the moment when I had had a seizure in front of him--and turned it against me. He started calling me names ("Epileptosaur") and saying things like "keep me out of the splash zone next time".

I think I kept my composure in the moment (did I?) but I was completely shocked. Not only because I did not expect this kind of behaviour from this person, but also because it was the first time my epilepsy has been used against me. It's the first time in my life that I have been at the receiving end of that kind of treatment. I mean, I've been insulted a million times--I've been a youth worker for years--but this was different.

And wow, that hurt like hell. I don't know how else to say it.

This is why we teach kids not to go around making fun of people for things they can't control. This is why we model empathy and kindness and patience and love.

So today:

Be kind, for everyone you meet is fighting a hard battle.
Ian MacLaren