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How I Am Learning to Live With Epilepsy

For starters, the people in my life need to know about it.

by Samuel Dunsiger
March 9, 2020 | Living

In October of last year, I was unconscious for nearly 15 minutes.

It started as a crisp fall day but it ended with me in the hospital. I was in the park with a friend when I suddenly zoned out with my eyes practically bulging out of their sockets. Then, I collapsed; I hit my head and I slid underneath a picnic table, my entire body convulsing.

The experience is commonly known as a seizure, specifically a grand mal or convulsive seizure. It’s a common experience for people with epilepsy, a neurological disorder characterized by recurring seizures.

Seizures can range from partial seizures, which are limited to certain parts of the brain, to more generalized seizures, which include absence and convulsive seizures. The American Epilepsy Society estimates that approximately one in 26 people will face epilepsy in their lifetime.

Illustration of head profile with strong epileptic activity in brain. Rewire PBS Living Epilepsy
The American Epilepsy Society estimates that approximately one in 26 people will face epilepsy in their lifetime.

I was first diagnosed with epilepsy in 2013 as a 26-year-old. While on vacation with my family, I experienced a partial seizure, characterized by sudden muscle movements, but I maintained consciousness and awareness throughout the entire ordeal. We were in the middle of a bookstore in the Minneapolis airport during a stop-over, prompting us to abandon our vacation and return home.

Although I was put on medication after the incident, it was only a small dose -- practically a placebo. I didn’t consider epilepsy to be a significant part of my life.

My latest epileptic episode in October prompted the chronic disorder to resurface in my life. My doctor increased my medication and I learned I needed to pay closer attention to how I’ve been feeling.

Because I haven't lived with epilepsy as long as I have with other struggles, this part of me isn't quite as salient. But I've started to recognize that I am a person with epilepsy. There are things I can do to stay safe and healthy.

Pay attention to the warning signs

Seizures can happen anywhere, and at any time. However, while seizures are inherently unpredictable, there are warning signs that a seizure may be coming.

Right before I experienced my latest seizure back in October, I started to feel dizzy and light-headed, like the world was spinning.

According to the Epilepsy Foundation, this could be one of the many warning signs of an incoming seizure, along with sudden muscle movements, headaches and feelings of numbness.

Although the emergence of any of these warning signs doesn’t guarantee that a seizure is on its way, it’s still critical to pay attention to these warning signs and to take the necessary precautions. These days, whenever I feel light-headed, I immediately sit down, no matter where I am.

Open up about your chronic disorder

When I first met my best friend, I neglected to tell her about my epilepsy. After my partial seizure in 2013, I never thought I would have one again so it didn't seem important information to share. But when I eventually did open up to her, she lambasted me for not telling her sooner. What if something had happened?

Ultimately, she was right. Four years later, she stood right beside me when I had my grand mal seizure. After I fell under the picnic table, she dragged my body from underneath. Then, she and a few passersby proceeded to roll my body on its side.

Turning the person on their side to ensure proper breathing and loosening their clothes around the neck are some of the responses of what to do in the event of a seizure, identified by the Epilepsy Foundation. The Foundation also advises against putting objects in the person’s mouth or restraining them.

The unpredictability of seizures is precisely why it’s critical that your peers know about your epilepsy. They need to know what a seizure looks like. And more importantly, your peers need to know what to do in the event that you have a seizure. The people in your life can only help if you've prepared them by sharing your diagnosis.

ICYMI: Key Ways to Offer Support to a Friend with Chronic Illness]

Wear a MedicAlert bracelet

Communicating to the people in your life is only part of it. Shortly after my diagnosis in 2013, I got a MedicAlert bracelet; but of course, I didn’t wear it.

However, since my latest seizure in October, I have started wearing it every time I leave home. After all, my friends won’t always be around, and in the event that I have a seizure while I’m out and about, it alerts strangers of my epilepsy.

My MedicAlert bracelet identifies me as someone with epilepsy, it highlights that I’m prone to seizures, and it includes my emergency contact information.

In addition to MedicAlert bracelets, there are a number of seizure alert devices available, including smart watches, camera devices and even special mattresses for people with epilepsy.

Look after yourself, both physically and mentally

Seizures can be exacerbated by a range of factors, including stress, sleep deprivation and heat.

I’m still uncertain what caused my epilepsy. I don’t know if I’ll ever have a seizure again. And it’s scary to think that I don’t know where it would happen or when. Will I have a seizure on the train? At home? At work? In the middle of a restaurant?

I can't predict what will happen but I can take better care of myself. I’ve started to take more steps to minimize my stress and practice more self-care. I consistently take breaks during my work day; I eat better; and I’ve been getting more sleep. From wearing my MedicAlert bracelet to being open about my epilepsy, the only thing I can do is take precautions and take care of myself as much as I can.

Samuel Dunsiger
Samuel Dunsiger is a writer, mentor and comedian from Toronto, Canada. You can find him on Twitter at @samdunsiger.
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