Using my Epilepsy to Make a Difference

“Your EEG was normal, which leads me to believe that this is in fact nothing neurological, but it is psychological, I will refer you to psychology.” Several odd episodes resulting in a loss of awareness and involuntary sentences such as “Where am I? What time is it? Why am I here?” which lasted for about 2 minutes before I would snap back into reality had led me to be referred to a neurologist, the voice of the above quote. This was not any neurologist; this was a neurologist who had been practicing over 30 years and who had really taken me seriously the first appointment. But the moment the possibility of epilepsy was gone, so was I as a patient.

The episodes continued, and even got worse and more weird. I started grabbing people telling them I was going to “have an episode,” and proceed with smacking my lips or rubbing my hands or sometimes pulling at my clothes. I would have no recollection of ever saying that. Sometimes after the episodes, I would be so tired and I would just lay down and sleep for hours. Other days, I would be so tired from being busy with school and work, that I would ignore the weird feeling I sometimes get when I wake up to a day of episodes, and keep going until I had 3-4 episodes.

I had always been open and honest about my episodes, making sure to tell all my employers and professors that sometimes I would have these unexplained episodes, but not to worry because, “I’ll go right back to being normal.” One of my teachers in high school even said her friend had something similar – “dissociative amnesia” – and that is exactly what the neurologist had diagnosed me with.

For the most part there were no issues; I was treated no different than my coworkers or any other student, and life went on. When I was 19, a very close family member started an argument amongst the family that my episodes must be a result of eating too much junk, and that I myself was causing the episodes. I would argue that I think every teenager would have episodes then; I mean, what teenager doesn’t enjoy some occasional candy? This caused silence and tension amongst us for almost 5 years, bringing on a lot of different emotions. But even then, I never thought about the potential consequences of these episodes, the doctor said it was just psychological right?

When I was finally referred to psychology, I had already been on anti depressants for a while and was not looking forward to talking about my feelings. I had always been the tough girl with the angry face, and I liked to be left alone. For the first few months of my sessions I looked down at the floor, playing with my clothes and nodding yes or no. I barely talked and it was the most awkward hour of my life. I’m not sure what changed but I did start opening up and looking him in the face. I still go to my psychology appointment every week, and it is one of most rewarding things. To look at where I was then and where I am now, and the difference in my thinking and outlook on life, I must thank the neurologist who misdiagnosed me because I would have never meet my amazing psychologist.

This psychologist was one of the very few people convinced these incidents were so much more than “psychological episodes.” After tracking them for months, he noticed a slight pattern in the times they occurred, and even some symptoms, and told me to track these each month. I went to my family doctor of 10 years with the information and asked him to please refer me to another neurologist because I believed there was no way this pattern was psychological.

In waiting for this referral, which as we all know how long those things take, the episodes continued happening. In February of 2018, the episodes finally culminated into the worst one I have ever had. I had ironically just left my psychologist and was heading to the bus stop to go to the gym downtown to work out.

The last thing I remember was setting my backpack down on the bench inside the bus stop. When I came to I was in the back of a police car, frantically trying to remember what must have happened over the last 10 minutes.

It turns out I set my backpack down at the bus stop and walked into the middle of the road and sat down. A man almost hit me and then called the police. This wasn’t just any road, this is a road that has over 48,000 cars drive over it each day.

Suddenly it hit me that they all assumed I was trying to harm myself or may have been on some sort of drug. Trying to convince them was going to be hard, especially with no solid diagnosis: “Oh hey, Mr. Police, I’m so sorry, I didn’t mean to walk into the middle of the road, I just get these random blank outs. I’ll be OK.” Quickly, I remembered my psychologist had given me his info card that day, and I pulled it out and gave it to the police who called him and he confirmed my story. The police then asked where I was going and dropped me off, just like that, no more questions. This expedited my appointment and the neurologist quickly saw me.

In March, I was put into the epilepsy-monitoring unit where I would stay for 4 days in a bed with electrodes attached to my head and a video monitor. Within minutes of the electrodes being put in my head, I had an episode going up in the elevator, and another a few minutes later. At the end of 4 days, they caught a total of 4. On March 18, 2018 I was diagnosed with epilepsy, specifically, complex partial seizures. Since then I have been put on 4 different medications and fortunately the seizures have been reduced, but have not completely stopped.

The stigma started the moment I changed the word “episode” to “seizure.” I was no longer a normal employee or student, rather, I was the employee and student with epilepsy. I was no longer trusted to be alone with children for fear I might do something weird and hurt myself or the children. The stigma of being “abnormal” was now constantly present whenever I told someone I had epilepsy.

I am an open and honest person, and never want to scare anyone, so I usually tell people about my epilepsy in situations where I have had one that day, or I will be with them for a few days. Some people are really supportive. Others are not. In one of my placements, I walked in to introduce myself and within 2 minutes had a seizure. When I came to, I was visibly mortified, but the teacher was so supportive and interested, and to this day still checks up on me. Last summer I got hired as a supply daycare provider after I was blatantly asked in my interview whether or not I had it (totally illegal). I said yes. I was hired anyways but sent home during a seizure and asked not to come back without a doctor’s note; I had another seizure on the way home and came to on train tracks.

The first few months after getting diagnosed I felt so alone and upset, that I almost convinced myself I could not finish my Bachelor’s of Education and should just drop out and go on disability.

What principal would trust a teacher with epilepsy? Even some students questioned me as to whether or not I could finish; I decided I wanted to prove them wrong.

The chance came in April of this year when we all got an email to our school accounts encouraging us to enter the Innovative designs for accessibility (IDeA) Competition, a competition encouraging university students to develop creative, innovative, and cost effective solutions to accessibility-related issues. I knew right away I wanted to enter and do something with epilepsy. I just needed to think of something. It took a couple weeks thinking about different projects, but one day I looked at seizure first aid instructions and the idea just came into my head. Not many people know seizure first aid and if more people did, perhaps the stigma would be reduced.

In a few days I created my Epilepsy Toolkit, which consists of a pamphlet with the types of seizures, printed first aid instructions, a timer, and voice recorded first aid instructions. I also added in ‘Nurse Nick’, a stuffed teddy bear in a nurse’s costume that children can bring around with them. The name is dedicated to my friend Nicholas Wettlaufer who passed from SUDEP (sudden unexpected death in epilepsy). In the future I hope to add more items that would help with seizures such as a towel for underneath someone’s head if they are having a tonic-clonic seizure and have fallen to the ground, and a calendar that individuals can keep track of their seizures on.

I felt so proud of what I created, and even more proud when I got an email 2 months later congratulating me on winning second place. I thought that after winning, the Epilepsy Toolkit would just be something I bring with me around and tell people about. But within a week of winning, I was asked to do interviews on two radio shows and with three newspapers. Doing it was so rewarding because I finally got to tell my story, and suddenly I felt I had found my passion: teaching others about epilepsy. In addition to the papers and radio, I had parents messaging me asking to buy the Epilepsy Toolkit so they could bring them to school and give to teachers. I was so excited and started thinking about how I could make them and then get the Epilepsy Toolkits to people. I was stopped when I realized I cannot just give these Epilepsy Toolkits out, I need to do the necessary legal background first.

That is where I am currently at with my Epilepsy Toolkit. I have raised about $1,000 through gofundme and continue to raise in the hopes of getting enough so that I can get the legal documentation to be able to get the kit up and running. I hope to one day see my Epilepsy Toolkit in schools and hospitals everywhere because I believe it can really change the lives of those living with Epilepsy. I hope to be able to travel around the world and teach others about epilepsy, especially in low-income countries where the stigma of epilepsy is very prevalent.

I hope that by reading this you have learned a little bit about epilepsy and what those who have it go through daily. Know that we are not trying to scare you when we have a seizure, and the best thing you can do is just be there for us, and learn about epilepsy. There are many different kinds of seizures, and there are so many resources that you can read online such as Epilepsy Southwestern Ontario that lists the different kinds of seizures in simple, easy to read text. The best thing you can do is to ask people about their epilepsy, because there is nothing more exciting than being able to share our stories with other people.