Remove The Filter National Epilepsy Awareness Month 600

November 30, 2021

By: Courtney Granick, Director of Learning and Development, and son Carter

One year ago, at the age of 16, Carter found out that he had focal epilepsy—a diagnosis that was 10 years in the making. Unfortunately, his story is not uncommon.

However, he never let it slow him down. Carter is salutatorian of his class, starting forward and captain of his varsity basketball team, aspiring neuroscientist, published author, tutor, community service ambassador, son, brother and friend. Now, he hopes to use his voice to help others find their paths.

In honor of National Epilepsy Awareness Month, we sat down with Marinus’ Courtney Granick, Director of Learning and Development, and her son Carter, who bravely share their journey with epilepsy to help create awareness, #RemoveTheFilter and shine a light on the realities of living with epilepsy.

Hear their journey in their words:

Carter: My first recollection of having epilepsy symptoms was nearly 10 years ago, when I was around eight or nine. I didn’t know if it was something other kids experienced, so I kept it quiet and it ended up stopping, temporarily. However, in the fall of 2018, the symptoms returned. One day, when I was on my way to a basketball tournament over Christmas, my mom was driving and I was in the back of the car with my friend and sister when I had a seizure and, for the first time, everyone saw it.

That started a ramp up of symptoms. I still don’t truly know how to describe the feeling; it is like an aura comes over me, almost like a déjà vu feeling, for 10 or 15 seconds, and then it will climax— the left side of my body will go numb and I am not able to talk. If I try to talk, it apparently comes out as some sort of gibberish. But I do not lose consciousness and I have full motor function; I can tell you exactly what happened with everybody around me or exactly what somebody said. I can follow directions—you can tell me to move, and I can move. I just can’t feel the left side of my body. This can last anywhere from 10 seconds to almost two minutes and I still haven’t figured out what triggers it or how I can stop it.

The summer of 2019, when I was going into my sophomore year of high school, the seizures started getting worse. We started recording them because I was having 30 to 40 a month. I can vividly remember sitting in my AP stats class and texting my mom multiple times to log seizures over the duration of just that one class. Because I wasn’t having convulsive seizures, I was able to hide it well as long as I wasn’t talking or called on to talk.

I minimalized it for a long time, but once the seizures started happening more frequently and lasting longer I knew I needed to get it checked out. I got EEGs, MRIs, a ton of blood tests and a full cardiovascular workup. At this point I still had no idea what was happening or how to treat it. While we didn’t think it was harming me, we didn’t know for sure.

The test results all came back showing nothing was wrong. It wasn’t until last year, when COVID-19 shut down my junior year, that I was presented with an opportunity to really spend some time figuring out what was happening to me. So in November of 2020, I did a prolonged EEG that involved a week-long stay at a hospital where I was deprived of sleep—and that’s when I was officially diagnosed with focal epilepsy.

Courtney: When we received that diagnosis, a hesitating factor was that we were told if he had to go on medication, it could change his processing time. I was really worried it would impact his grades or change his personality, especially because Carter is such a high achiever. But, with the seizures happening more frequently and him on the verge of getting his driver’s license, we wanted to make sure we were keeping him and others as safe as possible.  

Carter had one seizure in particular last year that happened in front of one of his friends and lasted a very long time; it was especially frightening because he didn’t quite remember that one. So when he started losing consciousness on top of all of these other concerns, I wanted to make sure we were taking all necessary precautions; that’s when we went in for the prolonged EEG. With his diagnosis, we were able to get him properly medicated and, luckily, we haven’t noticed any significant side effects.

Carter: For a long time, I didn’t tell anybody outside of my family. The only person who really knew at first was my friend that was in the car on the way to the basketball tournament. He didn’t really understand the full aspects of the diagnosis or what was going on. I kept it really close to the chest; I didn’t want to tell anybody until we were sure what it was.

I was also afraid it would impact other areas of my life. As my mom mentioned, I didn’t want my driving to be impacted if someone found out, because I had full motor function. Or to not be able to play basketball—you need a ‘ticket’ to play and one of the questions is if you’re epileptic or not. I also didn’t want to be pinned as “the kid with epilepsy”. Or “Wow, this kid is really smart, but he also has epilepsy”. I didn’t want that to be one of my defining characteristics, so I didn’t say much.

But now, I feel like I’m past that area of caution. I started telling close friends, and then more people, gradually becoming a little more open about it. Now, I’ve talked about it with a number of people—sharing my experiences, what I want to do with that in the future, and how it’s not so much of an obstacle for me anymore. It’s been something to talk about—to educate people about. It’s been something that I’ve needed to tell people about at times, so that if it ends up escalating to an unsafe situation, the people I’m around know how to make sure I’m okay. Even if they can’t do much, I don’t want them to panic.

Now that enough people know, it hasn’t defined my personality or become one of my defining characteristics like I worried it would. It’s a learning lesson. My epilepsy is now something that I consider part of my personality because it’s helped me to see what I want to do for my future and drives me to continue reaching out to others. This month in particular, I started posting things on epilepsy awareness to my social media, trying to spread awareness and help be the change.

I was surprised at the amount of support and feedback I received from those posts. It sparked conversations with people I know that don’t know anything about my diagnosis or even epilepsy and presented an opportunity for me to help educate and spread awareness. I don’t like to do it over social media as much though; I would rather do it in person or over the phone so it’s more personal and nothing gets lost in translation.

It was really interesting to see that other people I know are impacted by epilepsy but are also hiding it or not sharing as much. These types of open conversations can really help other people who are struggling behind closed doors.

I consider myself extremely lucky to have the support system I do and that my epilepsy has not impacted my ability to do what I want in life. I have always known that I wanted to go into the medical field from a really young age and that stemmed from the influence of my mom. While I had ideas of what I wanted to do within that field, this diagnosis really directed me to neurology or potentially even biomedical engineering. Now, I’ve been applying to neuroscience programs at a few colleges—I will find out about admission in the very near future.

Both professions would enable me to not only develop treatments but to aid patients in trying to understand their situation while simultaneously being able to understand my own better. I want to use my career to bring new medicines or even cures to people so they no longer have to treat epilepsy as an obstacle. Instead, they too can use it as a learning experience and share their story with other people. It’s like a domino effect where I could help people, and those people could then go on to help more people and continue to create more education and awareness so no one feels the need to hide their epilepsy. Epilepsy doesn’t need to be who I am, but it can be part of who I am and I can embrace that now—I want others to feel the same.

In the meantime, I want to volunteer to be a camp counselor at Camp Boggy Creek in Florida next summer. In this capacity, I could help children with chronic, life-threatening conditions by facilitating open discussions to help them come to terms with their diagnosis and how they too can embrace it, talk about it and seek out help. So that’s really what I want to do—expand outreach, aid and assistance to other people and help them find the path for themselves.

Disclaimer: Marinus Pharmaceuticals is not currently studying treatment options in focal epilepsy. Carter’s story is for educational purposes only.