Exhausting experience
‘It’s the anxiety of not knowing what will be a trigger that day,’ says Islander with epilepsy
Epilepsy, a brain disorder that causes seizures, has gained more public awareness in the past few years, but what is it really like to live with it?
Carey Wood was diagnosed with epilepsy back in 1996 and has spent a lifetime learning to manage the condition. Her diagnosis came with a bit of a bang… literally.
“I had a tonic clonic seizure, previously known as a grand mal seizure, at school at the end of the day. I fell down a flight and a half of stairs and broke my ankle in three spots, shifting it out of place 1.5 inches, requiring surgery,” the Islander said.
“At that time, we didn’t know that I had a seizure. I went in for surgery and it was postponed regularly as I continued to have seizures and I needed to be stabilized before the surgery could be performed.”
While her diagnosis provided some clarity, it didn’t give her access to the help she needed, she says.
“The diagnosis at that time really didn’t change a lot. I had just gotten my driver’s licence and I lost it. I would have tonic clonic seizures often and continue to live the way I had,” she said.
“My parents had no idea what to do, and there were no supports at that time. If there were supports, they were unknown to me.”
Over the years, a lot has changed with Wood’s condition.
“Living with epilepsy sucks! I have developed more types of seizures, including photosensitivity. Most people think that having a seizure is falling down, doing the “funky chicken” and that is it. There is so much more to it,” she said.
“Different types, medications, and side effects, what happens in public and so many uncontrolled things. There are lots of side effects to medications, and seizures.”
Unfortunately, epilepsy can be a very unpredictable condition to live with, says Wood.
“I am always afraid. I’m afraid of when I will see something I am sensitive to. Some of my seizures are also photosensitivity related. If I go out in public and a kid has flashing shoes, I’m having a seizure. If someone has sequins on, a sequin face mask or something that glitters, I am having a seizure,” she said.
“Now not always, but it can depend on the day. The first sighting of the day, I may be fine, I may not. There may be no signs. Each time it gets worse.”
The world is very inaccessible to folks with epilepsy, as Wood points out with several examples, from movies to parades, to events with flash photography.
“I can no longer shop at the Atlantic Superstore, their new security systems have flashing lights, and I’ve had seizures in the store. Management hasn’t even responded to us when we have reached out to let them know,” she said.
“Going to different festivals/markets is now next to impossible. A vendor may have flashing lights, making it not worth going to at all. The Christmas markets are a big no. Through the winter I have to become a hermit. People use the laser lights for decorating for Halloween and Christmas, and even keep them on year-round.
“I have to avoid the mall, the mechanical animals people ride on have flashing necklaces, the new Folks Fries sign flashes, and so much more.
“There is no accommodation, and most businesses do not want to accommodate for a single person.”
The unpredictability of her condition stacked with the uncontrollability of the world makes daily life quite difficult for Wood.
“I wake up every day not knowing what the day will bring. Have the day planned out. Feeling great. And one little thing can cancel the day, or days,” said Wood.
“We were at church the other week and the pastor used a laser pointer to show something. I was done for the next two days, all I did was sleep. We had plans for both days and had to completely change them. It’s the anxiety of not knowing what will be a trigger that day, and how bad it will be.”
A seizure is an incredibly exhausting experience, says Wood.
“Before a seizure I have no idea. If I am having a tonic clonic, there’s a warning sign that my husband notices: I will look to the ceiling or sky. He knows to always ask what I am looking at, and if there is no response he knows I’m going to drop for a seizure. If I’m watching an eagle fly overhead, I’ve learned I always need to answer the question,” she said.
“I’m not sure what it is like during a seizure. Yes, I’m the one having it, but I have no idea. After a seizure, recovery depends on the type and how many I’ve had that day. When I have a tonic clonic, my recovery has been up to a week. I’m exhausted and have likely bitten my tongue and cheeks.
“I usually feel pretty low, as I wish I had more control. Less severe seizures like focal seizures I can feel fine right after it, but not always. Sometimes it can be like recovering from a concussion.”
Wood wishes her condition was more widely understood, but its grateful for her loving and accommodating family.
“Some people are genuinely interested in and want to know more. Most are surprised as for the most part unless I’m going through a rough time you would never know. We have learned to adapt our lives to make the most out of each day,” she said.
“My husband and daughter are amazing! They make sure when I go out that it’s a safe environment. Our daughter often sees triggers before me, she has learned her entire life.
“It would be nice if people could be more considerate for something like epilepsy, and all the other invisible disabilities.”
“I am always afraid. I’m afraid of when I will see something I am sensitive to. Some of my seizures are also photosensitivity related. If I go out in public and a kid has flashing shoes, I’m having a seizure. If someone has sequins on, a sequin face mask or something that glitters, I am having a seizure.”
Carey Wood