By: Pricilla Salahuddin
Shake it off. Blink. It’s not happening. I promise. You’re still here.
These things go through my mind when I feel like someone is intensely looking at me.
It’s that same kind of look that I confusingly woke up to over and over again when I was 15 years old. That look still haunts me. I used to be traumatized by ambulance sirens too. Every time I heard them I had to pinch myself and tell myself that it was not me in the back of that red racing truck.
This all started at the end of my freshmen year of high school, 2008. I was a healthy teenaged girl — until one afternoon I was convulsing on the floor in my grandma’s living room. Next thing I knew I was in an ambulance, screaming, “I don’t want to die.” I tell myself that the reason I was yelling such a horribly scary thing is because my cousin Sarah also had seizures and died when we were both eleven. But Sarah’s story is completely different than mine. She had a brain tumor.
Before my first few seizures I had no idea what epilepsy was. A person has to have three seizures to be diagnosed with epilepsy, which for me happened fast. It was not until after those three episodes that I was able to see a neurologist and go through the different tests, including several CT scans and EEGs. These checked for a brain tumor or anything else that could cause seizures. I was clear. If nothing is found, doctors generally diagnose the patient as epileptic.
Nearly 3 million people in the U.S. suffer from epilepsy. When I first went to the End Epilepsy Walk, I was mind-blown by how many kids were there. I saw kids in wheelchairs and heard stories about how many of them had to go through brain surgery. I was grateful I did not need to go through any intense procedures, but that time of my life was still one of the darkest times I can remember. I felt sorry for myself, and I felt guilty for feeling that way.
I felt sorry not only for myself, but also for those who had to see me go through this hard time. When I started to have seizures my little brother was about five years old. I know he got scared when he would see me convulse suddenly, my eyes rolling back in my head. To this day I feel guilty that he had to see me like that. I have to tell myself that it is not my fault; it was out of my control.
Then there are my parents. They had to see their first-born child go through something that they never could have anticipated. Not only did they see me go through the seizures, but they saw me at my worst. I think it’s safe to say that during that period of time I was depressed. As far as I know, that is the last thing a parent wants to see their child go through. We were all confused and scared.
I went through 15 grand mal seizures from the end of my freshmen year through my sophomore year of high school. I went from doctor to doctor, each one putting me on high dosages of different medications, but the seizures remained uncontrollable. There seemed to be hope when I was put on two different medications, Topamax and Keppra, but when lab results showed that my liver was being affected, something else had to be figured out. My doctor decided to lower my meds, but it happened too fast — the seizures came right back.
Not only did my physical appearance begin to change but my mentality changed as well. I lost a lot of weight because of the different medications I was on. I no longer looked like the built soccer player that I used to be. I began to isolate myself because I was embarrassed about what I was going through and I knew people were talking. I had several seizures on campus and it was new to everyone, including myself. My second seizure happened in class when I was about to take my math final, and from what I heard it was definitely a scene. My group of friends got smaller. Thinking back, I’m not sure if it was because they began to distance themselves, or because I did.
I have now been seizure-free for almost two years, and I’m pretty sure the last one I had was my fault. It was the day after my 21st birthday. I had been told several times by doctors that the medication that I am on now does not combine well with alcohol. I’m able to drink, but I have to know my limits because one drink is like four for me. Knowing this, I stupidly decided to not take my medication the day of my 21st birthday because I wanted to be able to drink all that I could. The next day, on December 28, I had what I hope will be my last seizure. I still drink, just with set boundaries.
I’m now 23 and I have not made that mistake again, nor do I ever want to. I hope that more people will grow aware of epilepsy and what to do in a case if they see someone having a seizure. Epilepsy is not a rare thing; it is far more common than you would ever think.
Today, I took 500 mg of Keppra. I will do it again this evening, and I will continue to do it for the rest of my life. If all I have to do is take two pills a day to keep me from returning to my worst nightmare, then that is exactly what I’m going to do.
This is just one story about a teenaged girl who had to go through some crazy adversity. There are many stories similar to this one and some that are much worse. I am thankful that I am here today. Although the nightmare still haunts me, it is something that I have learned to live with and not let hold me back. I hope that this can motivate someone to move to forward even in the darkest times.