You are you, not your diagnosis

Joseph, Joey, Stewart, 17, was diagnosed with epilepsy at the age of 11, after having his first seizure on Mother’s Day, 2012. Now, he is about to start college a year early to pursue his dream of becoming a history teacher. He overcame many obstacles throughout his high school career due to his epilepsy, as he explained to me.

Stewart explained is medical diagnosis in both the general term and what it is for him personally. He explained “Epilepsy (in general) is a neurological disorder. It is, in lame man’s term, is when the neurons in your brain fire at excessive rates. It can be caused by trauma or by a hormone imbalance.” However, he went on to explain that “I live with Rolandic epilepsy. It is when the hormonal imbalance that happens during puberty or adolescence causes the increased brain activity. When I have an epileptic episode, it can feel like I ran 10 miles in 3 minutes. I am more apt to have a seizure while I am sleeping.”

Epilepsy prohibited Stewart from many things throughout high school, but the biggest thing was football. This was due to it being a high contact sport, and if he were to receive a head injury while playing it could send him into a seizure or a series of multiple with a high chance of them not being able to stop them from happening. The first doctor Stewart saw completely prohibited him from playing; however, this doctor did not stay in his life very long due to other issues.

When Stewart got his new doctor, it was the same doctor that his mother had during her teenage years because the diagnosis was hereditary. That doctor was the first person to believe that Stewart could play, he just had to be more cautious than the other kids. Stewart goes on to explain that football was a setback in high school, “because 90% of people thought that I couldn’t do it, or would never do it, so I had to work twice as hard to prove them wrong.”

Although he pegs this as one of the largest setbacks within his student career thus far, he was a captain on JV and would have went on to play for the varsity team this year if it was not for the COVID-19 pandemic.

To look at who Stewart is as a person, I asked how he would describe himself, he said “the first thought that comes into my head… Stubborn…” He goes on to explain his strengths and weaknesses, and he believes that his biggest strength is “determination and perseverance because I learned to never be satisfied and to always expect more from myself and always push myself to learn more and to always better myself.”

While his weakness was overthinking, which I believe many people struggle with now-a-days.

I asked Stewart how his student career has been affected by his diagnosis, both positively and negatively. Negatively it affected him due to the side effects of finding the correct dose of medication which made him moody, and more hostile. Luckily it is affecting him less now, but he still thinks that it was one of the big negative effects. When asked about how it has helped him (the positive effects), he said “It taught me that life isn’t fair. It also taught me to never expect things to go my way.” He also said that he  would  “Try to expect the unexpected, while trying to stay optimistic.”

I also was interested in why Stewart chose NECC for his early college plans he said “I chose NECC because it is where both my sister and my mother go to college, and they both highly recommend it. But also, because it is a program that is offered through my high school.” He also explained in an earlier question that his family is some of his biggest supporters, so it makes sense that he would want to follow in some of their footsteps.

While wrapping up the interview I asked some closing questions about advice that he would like to share to others who may be struggling with a medical diagnosis and schooling, and if there was anything else he would like to share with about his diagnosis. When asked about his own diagnosis he said he learned that “a diagnosis of any kind does not make the person, learning to live with a disorder or diagnosis is no difference than learning to live with the stresses of life that an everyday person would have to learn.” He also said that he learned, “I feel like someone with a diagnosis learns to appreciate life more and they learn more about themselves throughout a shorter amount of time. Because you have this disorder that you are living with that you cannot ignore, so you are forced to focus on yourself more than you would like to help your mental statis to stay positively in check.”

He gave a lot of advice to people who may be struggling through schooling with their diagnosis as well. The advice he gave that pertained to everyday life was “learn to incorporate [the diagnosis] into who you are, live with it but do not let it consume you,” as well as “Support the organizations that support your diagnosis. (be a member of the community that you are forced to be in).” Although his life advice is very wise for a 17-year-old boy, his school advice was superb.

He said “don’t use [your diagnosis] as an excuse, be open with teachers if your diagnosis is the reason for your performance being affected (late work, missed class, etc). Try to let them know as soon as possible, don’t make them wait. Speak first.” He goes on to better explain this advice through his own diagnosis, “it’s one of those things that if I have a seizure and I can’t turn in an assignment, I would arrange with them to turn it in next time I see that teacher.” The whole thing with me, that if I had a seizure and did not do an assignment, I would not tell the teacher that it is unfinished due to my seizure, but I would tell them I did not finish it, period. My assignment should have been done before I went to bed, so it is not my seizure that made me not do it, it was my conscious decision or forgetfulness.”

I think that the best advice he gave is necessary for everyone to hear, diagnosis or not. He said “Don’t be afraid to [eff] up. It is inevitable for everybody.”