Epilepsy Toronto – “Epilepsy — let’s talk about it.”
In the future, true compassion and understanding will replace political correctness. Begin the discussion now.
Iain, Liana’s nephew has epilepsy. This is what his mom and she have to say…
“Epilepsy is still extremely misunderstood. It is not a “designer” disease with heavy celebrity awareness efforts. There is not enough information out there, even though 1 in 100 people have some form of epilepsy.
My son, Iain was diagnosed with epilepsy when he was 4 and a half. It was an unexpected diagnosis and I had no idea what it all really meant. I hoped once I finally found out what “it” was, that he would be put on some sort of magic pill and be fine. I had 2 good friends with epilepsy but other than witnessing my friend’s grand mal in high school, and a few movies or sketches that showed a person convulsing on the ground, I had no idea what epilepsy really meant, or how it would affect my family: it would bring parts of it closer together, and fracture other parts at the same time. I had a lot to learn.
First off, there was no magic pill. There isn’t even a magic test. Doctors play a high stakes guessing game with medications based on my observations of my son. There is a terrifying weight placed on a parent when they know whatever physical sign that they report to the neurologist will result in upping or decreasing doses of medications that work on the BRAIN. This isn’t children’s Tylenol. It’s serious medication, with serious side effects.
Secondly, there isn’t just one type of seizure, like you see in the movies. At last count Iain has 4 distinct types. He is currently on an adult dose of medication: 9 pills a day. He cannot take any more pills because he is too little, and they still don’t completely take away the seizures. Before we found this far-from-perfect treatment we quickly blew past 3 different medications: Iain had a bad reaction to all of them. Doctors are doing all they can, but he’s far from symptom free.
Iain having epilepsy means he has to put up with a lot more supervision then a “normal” kid. It means me or my partner have to be in the bathroom for all showers or baths. I have to be an arm’s length away at all times in the pool, because he may have a drop seizure, which means that he loses control of his muscles. On ground, that means he falls down. In the water, he can drown. Watching him riding a bike makes me want to vomit with stress, even though he wears his helmet.
Epilepsy means having to guess what is Iain being a normal kid not paying attention and what is a vacant stare that may be hard for us to get him back from. It means waking up in the middle of the night to check on him, in case he is one of the 1 in 1000 people who die of Sudden Unexplained Death in Epilepsy.
Epilepsy effectively killed my previous bad marriage, and epilepsy means I have to try very hard not to kill my current healthy relationship. It’s so hard to get a consensus in parenting: when do you discipline? When do you just let it go? And how do you make sure his brother, sisters, and step-siblings get the attention they need too?
Epilepsy means I cannot go back to work. My days are spent at home waiting for the school to call and say he is having a bad day, and worrying that if I have a shower something bad will happen while I am in there. I cannot meet adults because I do not have a workplace, and there seems to be a social stigma on stay at home moms these days.
Epilepsy means that sometimes Iain was told to stand in the grass at school and watch while his friends played on the cement… because the school didn’t want to take a ‘what if?’ risk. It also means that just because it looks like he is lying down making a snow angel in the field, he could, to the uninformed eye, just as easily be in mid-seizure.
Every time something like this happens it means another trip to the school for me to educate the teachers and principal who are alienating my son, and often I am placed in the undesired spot of having to be the “hard case”. Advocacy means being ever vigilant, and it can be a lonely place.
Epilepsy Toronto has been a Godsend to me and my family. When our family lived on Vancouver island there were not a lot of support services or parents groups that I could turn to. In BC, Iain had a full time medical aide at school. A full time worker sounds great, and it was definitely appreciated, but there was a catch: if the aide was sick, the school would insist that I stay at school with my son, or he would have to come home. That was the extent of the services available to me.
Epilepsy Toronto, however, helps not just Iain, but my whole family. They came to my son’s school and held a workshop on Epilepsy awareness. They have a director of child and youth services that is available to me when I am at my wit’s end. They have connected me to other families that have children with the same struggles and they take the people who live with Epilepsy and they celebrate all they can do, and help them with what they cannot. They run workshops to help people get into the workforce.
I am touched and overjoyed that Epilepsy Toronto has been chosen to be a beneficiary of Futurecon. The whole concept of time travel is so perfect for bringing Epilepsy into the forefront. Epilepsy is a disease long attached to social stigma and fear. Even in modern times, eugenicists sought to prevent people with epilepsy from marrying or having children. The practice was common in the United States in the 1920s as well as in Nazi Germany. That the practice continued was underscored by the fact that the Americans with Disabilities Act, passed in 1990, made it illegal to discriminate against people with epilepsy in the workplace…In places like Tanzania,no one will touch a person who is having a seizure even if they fall into the cooking fires, for fear of demon possession.
The idea of time travel sort of gives me a sense of peace as well. It’s almost like going back to past generations and fixing the stigma and misinformation associated with the condition, and it gives me hope for an end to the politically correct war of words that’s stopping people from really talking about people with conditions that effect the brain. It doesn’t matter to me if you say Iain is an ‘epileptic” or that he has epilepsy: they mean the same thing. Don’t be afraid of words: our biggest problem is that no one is talking about epilepsy or the people who have it. I like that Futurecon’s somewhat controversial tagline has gotten people talking… because at least people are talking now!
Arnold H Glasow writes “Fear is the lengthened shadow of ignorance. The sooner we bring epilepsy out of the shadows, the sooner we replace fear with education. In that future, my son will be seen as an equal person, instead of the bearer of some scary illness.” ”
– Danielle Guerard, Iain’s Mom
“When my brother-in-law Jordan met Dani, it wasn’t a feeling of “nice to meet you”. It was more a “where the heck have you been?!” We’re frequently mistaken for biological sisters, and we see the world in very similar ways.
Before I met her kids, like any nervous parent, she gave us warnings: Andrew was a textbook rigid “gifted kid”. Shailee was “an artsy hippie”. Bree was bossy, and worked her adorableness. Iain… had epilepsy, and most people didn’t take to him.
The ridiculously geeky soul that I am, I immediately slotted them into the roles of the kids from Narnia. Then I discovered they love the same geeky stuff I do. We swap video games. The older kids devour books by authors like David Eddings, Robert J, Sawyer, and J. K. Rowling. Bree, although she is little, loves a computer game about a cyclops. And Iain knows more about Star Wars than I do. They’re not ‘normal’ kids. They’re special kids. It doesn’t feel like three healthy kids and one sick kid.
At least, not to us. Steven and I still can’t understand why people shy away from Iain — or “The Bean” as we call him — but we’ve seen it from friends, family, and strangers alike. It’s not that people get to know him and don’t like him. There seems to be a barrier to a real connection because of his epilepsy. The rampant ignorance about the condition turns good people into insensitive monsters, and they’d rather reject a little bundle of awesome than educate themselves on what epilepsy means — the zone outs, wipe outs, ADD like symptoms, and every other kick in the pants that comes with it.
They’re missing out on really magical moments though. He’s already defied “expert” opinions by learning to read. We were out to see the fall leaves and he started walking along the edge of a low bridge: he’s not supposed to be able to balance like that. He sometimes has trouble understanding instructions, so this past Halloween I got him to understand that you only go to the houses with lights on by invoking Star Wars and saying “Look for the lights! Stay on target! Stay on target!”
It worked. Come on, that’s awesome.
Yeah, sure, there are times it gets rough. He’ll sometimes just zone out on the floor. He’ll get repetitive movements that get annoying. It’s hard to tell if I’m smothering him by hanging too close in case he falls over, and when he does fall over, it takes work not to overreact: he’s a little boy. Little boys fall over without it being a seizure.
We knew we’d catch some flack for our tagline for this convention: “Let’s get RETARDIS!” We had all the discussions about the r-word and things like that. But it caught people’s attention and got people talking.
The people who don’t like it are entitled to their opinion. I just hope they make a donation to Epilepsy Toronto in the spirit of supporting people with developmental disabilities. As long as the education happens and the money gets where it needs to go, they can burn me at the stake as often as they want.
Because this whole thing isn’t about me. It’s about the nephew that I love. I’ve been in the entertainment game for a long time, and I’ve walked the fine line between edgy and offensive for over a decade. I’ve lived long enough to see words like “geek” and “nerd” become cool, but some people are still offended by those terms too. Once you stray out of boring territory, someone’s going to get offended.
And the dialogues that are being spawned as a result of people getting huffy are getting the message out. Spreading the word that 1 in 100 people have epilepsy is far more important to me than being personally liked. For others to understand that the condition encompasses more than grand mal seizures… that’s what’s important.
Oh, sorry, you’re not supposed to call them “grand mal” anymore. The new label is “tonic-clonic”. Unfortunately, the word hasn’t gotten out on that name change, so all the correct term conjures up in most people’s heads is a fizzy drink made from an enema bag.
Gross, eh? You probably won’t forget the term now.
I’m probably being a bit reckless in my devotion to my family. I’m aware I’m likely using a tactical nuke to blast away the shadows of stigma surrounding epilepsy when a flashlight would work just fine. But Iain’s a little bull in a china shop so I think he’d approve. His favorite threat is to fart in my face.
It may surprise you after that to hear that I reflect often on the simple nobility I see in my nephew. Perhaps it’s because he’s blessed with a big family, so it’s hard to be lonely, or perhaps it’s because he has a mother who loves him so fiercely that she’s sacrificed more than a fantasy novel heroine, but he doesn’t seem to see his struggle or his unfair isolation. People from Epilepsy Toronto pointed out to me that for a person with epilepsy, living with seizures is normal. They don’t know what it’s like for things to be any different. But… I don’t know, it still seems heroic to me. And it’s not just him, but his whole family. His siblings never cease to impress me with how strong and mature they are when it comes to the challenges of epilepsy. My brother-in-law had to get up to speed quickly, but now he’s right in there, giving medications, going to events, and welcoming Iain into his heart in a way that, sadly, few people are capable of. His most important job is still being a great step-dad.
So if I go too far, I do so with the best of intentions. Controversy is what I know, and if I can use that entropic power for good, hell yeah, where do I sign up?! Honestly, I wish I could do more, but to paraphrase Samwise Gamgee in Lord of the Rings, “I can’t carry it for you, Mr Bean, but I can carry you.”
Only… we call that playing Tauntaun.”
– Liana Kerzner, Chair of Futurecon and proud aunt