Our bodies can be very unpredictable. We feel good. We feel bad. We get sick. We get better. We sneeze. We cough. These are things that almost everyone deals with relatively easily. But what if your brain can go haywire at any moment and there is not much you can really do about it? Well, that is a reality for people who deal with epilepsy. Rob Leet, a recent graduate of Montclair State University with a bachelor's degree in music education, is one of those individuals. Below I ask him about his disorder.
Evan: So first off, what does it mean to be epileptic for anyone who does not know?
Rob: An epileptic is someone whose brain cell activity is abnormal, or disturbed. When this happens, the person has a seizure.
Evan: When were you diagnosed with epilepsy and how did it happen?
Rob: On December 23rd, 2008 my mother found me lying on the floor after she heard a loud noise coming from my bedroom. I was faintly breathing. After a visit to the emergency room and a few medical tests, I was diagnosed with epilepsy on December 30th, 2008.
Evan: Oh wow, that's really scary! How old were you when that happened?
Rob: I was 15.
Evan: That must have been extremely scary for you and your mom. Are you ever conscious when you have a seizure?
Rob: It was really scary for my whole family. I've only had two major seizures in my life and I was unconscious for both of them.
Evan: I'm guessing that this doesn't run in your family, then? Is it something that can be genetically passed down, though? I'm not very educated on the matter, to be honest.
Rob: It doesn't run in my family, but it can be passed down. Sometimes children will inherit some metabolic conditions that will increase the chance of them having seizures.
Evan: That's really upsetting. Do they happen randomly or are there triggers to having a seizure? I know flashing lights could be one.
Rob: There are four main triggers for seizures. You are correct. Lights are one of the triggers. The other three are sounds, hyperventilation, and stress.
Evan: Sounds? Is it loud sounds that can trigger seizures?
Rob: Yes. Loud sounds, certain frequencies, or specific sounds will cause them. The brain reacts to what we hear and sometimes will cause a disruption in brain cell activity.
Evan: Stress as well? Was this ever an issue for you in college?
Rob: Yeah this was an issue especially since this is one of my triggers. I would have to plan way in advance how to avoid being too stressed. I would go for a walk or listen to music to help relax. Stress isn't 100% avoidable, but the least amount of stress that I had, the surer I felt that I wasn't at risk for a seizure.
Evan: You said you have had two seizures thus far in your life, what was the trigger for your second seizure?
Rob: I'm not too sure, but if I had to guess, it would be stress related. I was so focused on trying to graduate college and I guess I let the stress get the better of me. Also, I was off my seizure medication for five years so I thought that I didn't have to worry about epilepsy in general.
Evan: I'm sure you are more cautious now! You seem to know a lot about the technical side of epilepsy. How did you become so knowledgeable on the subject?
Rob: After I was diagnosed, there were a few questions that were left unanswered like "what caused my seizure?" and "what can I do to avoid another one from happening?". The neurologist didn't have all the answers, so I did plenty of research on valid websites and learned about other people's stories from epilepsy forums. It was fascinating learning about how other people live and cope with having epilepsy and I wanted to find out how to do just the same.
Evan: And ways you cope include going on walks and listening to music when you start to feel stressed out, yes? Do you take any other precautions?
Rob: Correct. I will also talk to friends, go to the gym, or play video games to help relieve my stress. I once found this saying: "I have Epilepsy, but Epilepsy does not have me". I use this saying to show how I'm not going to let one disorder affect many of my life choices.
Evan: That's an inspiring saying! That can work with a lot of disorders and issues people deal with. I'll end with one more question. What would you want people to know most about epilepsy if you could inform the world?
Rob: Epilepsy is more common than you think. One in every twenty-six people is diagnosed with this seizure disorder. If anyone around you is having a seizure, please know your role in helping that person whether you are to be a standby in case something is needed, or you are the one to take care of the seizing person. If you are not sure what to do, there are many great websites that show individuals how to care for a person who is having a seizure. I encourage people to research what to do because it can save lives.
Evan: Well thank you so much! I hope people do in fact research a bit to know what to do when faced with a seizing person!
If you would like to contact Rob, he can be found on Instagram @rob_michael_gregory!
