GETTING MORE TALE #560: Seize the Day
It started in early 2008. It probably really began much earlier than that, but January 2008 was when I knew something was very wrong.
Jen and I were looking forward to getting married in August. She was still living in Brampton, and coming to visit me in Kitchener on weekends. Things seemed fine, until they weren’t. She seemed tired a lot. She slept a lot of the days and was up until late in the night. She seemed depressed. Then one day I noticed something really, really odd.
We used to enjoy playing Nintendo Wii all the time. Her favourite game was called Find Mii. It was a simple “Where’s Waldo” style of game. You had to find certain people in crowds. Jen was the master of Find Mii. I saw her finish the game a few times. She was unbeatable and had several winning strategies. There was one level where you had to choose a particular Wii character, and then a few levels later, you would have to identify that person in a crowd scene. It made sense to pick a character who stands out in a crowd, like one with a colourful hat. When Jen hit that level she picked the most generic character to find later. I thought that was odd.
“Why did you pick that one?” I asked. “That will be hard to find in a crowd.”
She didn’t answer. She didn’t even notice I was speaking. I just sat and watched her. She continued playing.
When she got to the level where she had to pick out the character she had chosen earlier, she was very confused.
“What?” she said. “I didn’t pick anybody yet.”
“Yes you did,” I answered. “Don’t you remember? I thought it was strange that you picked such an ordinary looking character.”
“No I didn’t…” she answered but there was worry in her voice.
I had my suspicions. I got with her parents and we eventually talked her into going to see the doctor. She was very resistant. I can understand this. Nobody likes finding out there is something wrong with them. It’s frightening. But so is watching someone you love suffering.
Nobody was particularly surprised when she was diagnosed with epilepsy. It fit what we were seeing. What I had witnessed was what the doctor called an “absence seizure”. I call it “zoning out” because that’s how it looks to an outsider. It looks like someone has completely spaced out, staring at nothing.
I thought, optimistically, that a neurologist would put Jen on some medication and she would be OK. Most people are. I had a friend who also had “zone out” seizures, but when he took his medication he was fine. When it comes to Jen’s health I always try to be optimistic. It could, after all, have been a whole lot worse. Unfortunately my optimism was misplaced. This was not going to be an easy fix.
There have been so many ups and downs since that day in 2008. From the happiness at finding a neurologist, to the despair of side effects and pills just flat-out not working. From people who don’t understand and mock epilepsy, to accidents and injury. There have been so many. These incidents have taken their toll not only on Jen, but on me. People forget that the role of the supporter is no easy task.
As 2008 went on, the wedding loomed closer. Jen prepared to move to Kitchener and start her new life with me. One of her former co-workers at Brampton Transit thought epilepsy was terribly amusing. “Wouldn’t it be funny if she had a seizure at her wedding!” one said, not knowing she was overheard. As if getting married and moving wasn’t stressful enough!
But we made it. We had an awesome wedding, and no seizures. We were very fortunate to be surrounded by the best of family and friends.
Jen moved to Kitchener and three months later had full time employment with Research in Motion, aka Blackberry (before they went tits up). She worked really hard and was very proud to get that job, and rightfully so. One of the perks to working there (of many including a custom R.I.M. Monopoly board that we treasure) were their company concerts. They had thrown private parties featuring Aerosmith one year, and the Tragically Hip another.
Their next employee concert wasn’t a private one, but still free: U2. U2 had signed a big endorsement deal and were on TV every night advertising Blackberry phones. Jen was very much looking forward to seeing U2, but with their light show, could she even go at all? Imagine her heartbreak when her doctor told her it was very unwise to go and see U2 in concert.
Concerts in general were a problem. She hasn’t been able to go and see one since we saw Russell Peters early in our marriage. We tried to see the Trailer Park Boys too. As soon as cameras started flashing, she had a seizure. She was taken out in a wheelchair and we didn’t see the rest of the show. Movies were also impossible. We had to leave The Muppets before the show even started. It has been difficult getting used to what we can and cannot do with her epilepsy.
She cannot drive. But she has to get out and have a life. Staying inside all day is a sure recipe for depression. She does her best. She takes busses, taxis and Uber. Unfortunately seizures can happen anywhere. Over the last few years I have received dozens upon dozens of phone calls telling me that my wife had a seizure on a bus. Off to the hospital we go, where we’d wait several hours for a discharge. Now, if she is able, she tries to insist on not being taken to the hospital. They cannot do anything for her there. We know this from experience.
Unfortunately seizures on a bus sometimes mean falling on a bus. Jen has had so many injuries from seizure related falls over the years: concussions, twisted ankles and knees, and a fractured knee. She’s no longer able to walk without assistance. When on a bus, she has to fight for a disabled seat. If she’s not seated on a bus, it’s not safe. And too many entitled children (and adults) refuse to move for her. A couple weeks ago she was told to move from the accessible seat to make room for a bloody shopping cart. An inanimate object. It is frustrating. When she falls, it is heartbreaking.
One evening (December 11 2011) after a bus seizure, one of those entitled kids (old enough to know better) thought he needed to take pictures of my wife on the stretcher for his friends. He is lucky that I don’t believe in physical confrontation. If I did, there would have been two people on stretchers. Jen’s mom said, “What is that kid doing?” I went over to speak with him as he was walking away.
“Hey! What are you doing?” I shouted. He ignored me and continued to walk away. “Hey you! What do you think you’re doing!” I repeated as I followed. For a second time he ignored me. Once again I shouted, “You, taking the picture! What do you think you’re doing?”
“Taking a picture for my friend,” he answered.
“Why, because it’s really funny?” I asked.
“What do you care?” he retorted.
“That’s my wife!” I said.
“I didn’t take a picture of her face, why are you being rude?”
Rude? Seriously? “I don’t care!” I yelled.
“Fuck you,” the little disrespectful dink said, and walked away. I returned the sentiment, but I could not believe it. I’m the rude one?
When she’s taking public transit now, we have a routine. When she is out on her own, she texts me every 30 minutes to check in so I don’t have to worry. When she can’t get somewhere because of an emergency vehicle with flashing lights, she can text me and we can figure out what to do. Aside from the falls and injuries, we have had some scares. I once witnessed her almost wandering straight out into traffic while picking her up from work. She’s had her shopping bags ripped off at the mall. She’s had people point and laugh because they think she’s walking around dazed from drinking too much. We have had to develop thicker skins.
What about all the doctors and specialists? Her first neurologist couldn’t figure out what was wrong with her and dropped her as a patient. Finding a neurologist is hard. There are no neurologists here in Kitchener. You have to go to Mississauga, London, or Toronto. Eventually we did the only thing we had left to try: Go to an emergency room in Mississauga where they have neurologists, tell them this girl keeps having seizures, and she needs to see one. It was her family doctor who instructed us to do this. Of course emergency didn’t want to deal with that, but that was the only option we had left. They changed their tune when we told them that she had a seizure right there in their waiting room. Now we have a new neurologist, and he is in the process of putting her through a battery of tests. Surgery is the option on the table, but there is a medication we haven’t tried yet that we are going to ask for: medical cannabis. That might be the miracle cure we are still hoping for.
In the meantime, we continue to fight on. We take inspiration from figures like Prince and Neil Young, both epileptics who overcame their illness to perform for millions on stage. We try to find the humour in life. We have to. We don’t have a choice in the matter. With that in mind, I’ll leave you with some of the epilepsy moments we have been able to laugh at.
When Jen comes out of a seizure, her senses all seem enhanced. Her vision can be like looking at the world through binoculars. She can see incredible detail and very vivid colours. After a seizure the world seems vibrantly bright. And unfortunately for her, sometimes the first thing she sees after a seizure is my face. So I can’t help but laugh by some of those post-seizure observations she’s made:
- “Wow, your beard is WHITE!”
- “Your nose is pointy…and triangle shaped!”
- A variation of the above, “Your nose is pointy…and tear-drop shaped!”
I have a glow-in-the-dark Albert Einstein T-shirt that I love. One night after a seizure, it was glowing away in the dark. That’s when she observed, “Your tummy is glass…on fire!” I guess that’s what glowing Albert looked like in the dark!
We will continue to fight this disease, and we will continue to try and see the light side of things. It’s the only way. If we didn’t try to laugh at it, it would have beaten both of us by now. That’s not going to happen. We have worked and fought way too hard since 2008.
In the meantime, we will continue to raise awareness. Do you or your kids have any articles of clothing with flashing lights? Do you take flash photographs in public? These things can, and will, trigger a seizure. Try to be mindful of your surroundings and the people around you. And please, if an epileptic asks you to stop taking flash photos, just turn off your flash. Don’t tell them to “fuck off” because “that’s not my problem”, as we have been told recently. Be a good person, and do your good deed for the day. Do your part to stop a seizure before it happens.