Adam Shapiro: Just Like Everybody ElseWhen I was first diagnosed at age 12 I didn’t understand epilepsy. I actually thought my epilepsy was caused by keeping the class pet, a bird in my bedroom. The weekend I brought home the bird, was the weekend I had my first seizure. Last summer I was asked to introduce the Eisai comic book that was created to explain epilepsy. I spoke about situations similar to the hero, Jack, in the comic book.
I spoke about being diagnosed with epilepsy at age 12. With no understanding or previous experience I suddenly had a grand mal seizure at 6 am on the bathroom floor. It scared my mom to death.
I ended up with bumps and bruises on my head.
When I was first diagnosed at age 12 I didn’t understand epilepsy. I actually thought my epilepsy was caused by keeping the class pet, a bird in my bedroom. The weekend I brought home the bird, was the weekend I had my first seizure.
Isn’t it funny the weird things you will believe if you don’t have the correct information? Now that I have better information, I try to do things to control my epilepsy. I take my medication at the same time every day. I try to go to sleep early and get a good night’s rest. I try to exercise and eat well. I work with my neurologist and the different types of medication to keep my epilepsy under control.
Stress can cause me to have a seizure but stress is hard to control. I just turned 18 years old and there are lots of things that stress me out and keep me up at night; tests, exams, birthdays, career, part time job, dating, college, good hygiene and weight. And of course the two biggest stressors are girls and good hair.
Unfortunately for all the extra steps I take my life has changed and people’s view of me has changed.
I don’t ride my bike alone anymore. I must keep a strict sleep schedule which means no more late night shows and events. I never lock the bathroom door any more in case someone needs to come in to help if I have a seizure in the shower (which is embarrassing when my mom comes in to check on me).
I have been discouraged from trying different sports because they are considered dangerous.
The medication that I am on often makes me feel dopey (not every day though) and I know this affects my school work. Could I get better marks if I didn’t have epilepsy?
The worst thing was overnight camp. I loved camp, but the camps I used to go, or apply to, wouldn’t take me. My family makes sure I am never alone for a long period of time, especially when I’ve been going through a period where it seems my seizures have increased. Despite some of these issues I am usually very happy and enjoy doing things I can do. Chess anyone?
Ever since I had epilepsy I have had a shorter memory. This is very frustrating to have a short memory because I can’t remember what I did the previous day, forget upcoming events, forget my birthday, which is embarrassing, and forget to bring stuff home from school and bring stuff back to school.
I can rarely have friends and if I do they have to know what to do if I have a seizure. This means not many friends can come over to my house unless there is an adult present. I also can’t visit most of my friends which sucks.
In grade 6 I told my class I had a seizure and they looked at me like they never heard that word before and even the teachers were confused too. I now was left out of swimming in the school (we had a pool in our school) but I could talk to no one about it because they could not help me.
After a seizure you’ve completely lost track of the time. To a person who has a seizure it feels like only a second has passed but to the people who are watching it feels forever and is very scary. When I wake up from a seizure my body feels numb, I feel no pain and I am exhausted. My energy is drained and I can’t walk for a whole minute. Sucks for me and my body.
I do believe my seizures are under control for the most part but I am still growing and my body is still changing so maybe I can have a few unexpected seizures that can happen in the future. Still with my medicine keeping me in check I will not have a seizure without an adult making sure I am ok. I will also never purposely miss my medicine (that could be dangerous if I miss my medicine).
The more people know about Epilepsy the less people will judge me and others like me in a negative way.
Even more importantly many people that I am around especially at school have been able to help me when I have had a seizure because they have been told what to do. Even on the School bus where I had a seizure. Both the School Bus Driver and the other kids jumped into action and helped me out until I got to the school. I was lucky on the bus because one of my best friends was sitting beside me and we had talked about what to do… It made a situation that could have been a lot worse turn out okay.
So the last thing that I would like to say is that the more people who are informed about epilepsy the chances are I will be able to do more things just like everybody else.
As part of the 2014 Scotiabank BuskerFest activities, the Canadian Epilepsy Alliance launched a new comic book designed to educate children about epilepsy. The Medikidz Explain Epilepsy comic tells a fictional story of 14-year-old who is navigating middle school while living with epilepsy. Epilepsy Toronto member Adam Shapiro, who was part of the launch event , later delivered his speech to staff at Eisai, the comic book’s sponsor. Here is an abridged version of Adam’s speech.