Purple Day: Tom’s story

Hello! My name is Tom!

I have a little story and message I wanted to share with you for Purple Day. Hopefully this will help you understand a little more about my experience and the experiences of others.

In 2017, I was enjoying a burrito in my parent’s kitchen, when I stared off into the void, proceeded to yell, and then collapsed on the floor. I was stuck in the hospital for five days after that. Everyone had thought it was due to a concussion, but I would later find out that I had a Tonic-clonic seizure, a type of seizure that involves muscle rigidity and convulsions. It was a scary first experience, and I thought my life would continue as it would normally.

In 2019, I woke up from a nap and wandered aimlessly around my apartment at the time, with my roommates making seemingly a jet engine’s worth of noise. It was as if I was watching my body move by itself. I would later find out that this phase of a seizure is called an Aura. I walked up to my bedroom door, still watching my body move and saw it punch a hole all the way through the door, scratching the arm up. Then I crawled into the walk-in closet and had a seizure alone. My roommates were obviously wondering why I punched a hole in the door and sounded like I was screaming and throwing things around. They opened it to find me slumped on the floor and proceeded to call Emergency Services.

This seizure led to multiple surgeries, lost relationships, missed opportunities, and constant anxiety. A feeling as if I was powerless. A feeling that comes back every time I have a seizure. Unfortunately, these struggles are not uncommon for people with epilepsy. In addition to seizures, those with epilepsy may face a range of challenges, including discrimination, social isolation, and mental health issues. For example, people with epilepsy may experience stigma and discrimination due to the misconceptions surrounding the condition. This can lead to difficulties finding employment, housing, and social acceptance.

Social isolation is another common issue faced by those with epilepsy, which can lead to feelings of loneliness and exclusion from activities and events. Additionally, people with epilepsy may be at higher risk for mental health issues such as depression, anxiety, and post-traumatic stress disorder (PTSD). These conditions can be related to the stress and emotional toll of living with epilepsy, as well as the side effects of medication.

Epilepsy is a neurological disorder characterized by recurrent seizures, which can take many

Christina Lépine, Features Editor » thecampus.features@gmail.com

different forms. Seizure types include Tonic-clonic seizures, absence seizures, myoclonic seizures, focal seizures and more. Epilepsy has been documented throughout history, and today, approximately 300,000 people in Canada are living with epilepsy. That is about 1 in 100 people.

SUDEP, or Sudden Unexpected Death in Epilepsy, is a devastating reality that affects 1 in 1,000 people with epilepsy each year. That is roughly 300 deaths annually in Canada. While the exact causes of SUDEP are not fully understood, we do know that taking steps to manage seizures and reduce risk factors can help reduce the risk of SUDEP. We need to do more to support those with epilepsy and reduce the impact of these challenges. It is essential to learn Seizure First Aid and educate ourselves on how to help those around us with epilepsy. By doing so, we can create a more inclusive and supportive community for people with epilepsy.

If you or someone you know has epilepsy, know that you are not alone. Seek help and connect with support groups and organizations offering guidance and resources such as Épilepsie Estrie at epilepsieestrie. com or Purpleday.org. Let’s continue to raise awareness and support those living with epilepsy. Together, we can make a positive impact on their lives.

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