Dear Former Self,

Despite the unknown future and how things will change, remember that everything happens for a reason and that due to you being open and having a support system, everything will be ok.

You had your first and worst seizure at 1.5 years old. Your breathing stopped. You were flown by helicopter to Children’s Hospital of Pittsburgh. For three minutes, you couldn’t breathe. On your way to the Hospital, you had multiple reoccurring seizures. When they got you to the hospital, one of the first things they tried to get the seizures under control was to put you on Tegretol. That completely wiped out your white blood count, so you were put in intensive care. For five days, doctors told your parents you would not be able to walk or talk again for the rest of your life. The doctors changed their mind about you when you stuck with it for 45 minutes to open a package of graham crackers.

Despite being dealt a new and worse hand, you were able to learn and process all of the information everything through school and could keep up. You did need an aid for typing and reading the problems. In Middle School and High School, you had a 504 to give yourself extra time on tests and quizzes. Your philosophy of never letting Epilepsy hold you back started from a young age as you did everything your peers did and even had a summer job while living on your own.

Despite your Epilepsy, you graduated from La Salle University in four years with a BSBA and a minor in Psychology. You had a solid GPA with a 3.55 in business and a 3.18 overall. Through all your education, you had to study differently than others, but you did not let that hold you back, and you would just put much more time into it.

Your lack of concern about your seizures caused others to not be concerned. Your approach was, and still is, to share about Epilepsy and how to help you to practically everyone you interact with. If you had a seizure that day, people would still want to be around you later that day if you were up to it. When anyone has witnessed you having a seizure, they have never been afraid to act accordingly by following the three general words of Seizure First Aid which are in this order: STAY, SAFE, and SIDE.

The recent part of your story also shows a lot of resilience. You had many things going your way as you: had gone almost 8 years seizure free, could drive, were living on your own, were attending social events, and more.

In April of 2023, things changed. Your neighbor in the apartment heard you start to go into the seizure, was around, and came in to help. In September of 2023 and March of 2024, you had one at your place of employment. Both times, you were treated well during and after. In April of 2024, you had one that like your first one took resilience to the next level. You had flown out west on your own, to see your brother and his girlfriend as well as family friends, as your parents were in Scotland. You had a seizure the last evening you were with your brother. Even though it had been about 15 years since he was around you during one, he was not afraid and knew exactly what to do. The next day, instead of trying to change plans and get a direct flight home, you proceeded to fly to Arizona on your own where you stayed for 2 days before flying back to Philadelphia with a 3-hour layover in Chicago.

These recent seizures have caused a lot of adaptation in your adult life, but due to your resilience and determination, you pushed through it. You went from being able to drive to having to plan, in advance, who will take you to and from everywhere. The change of your role was hard on you, but you did not worry a ton because you had a strong support system and took good precautionary steps. This led to your seizures not becoming as frequent as they could’ve been.

You have always been a person who doesn’t let the challenges of Epilepsy hold you back and limit you from doing various kinds of things in life. Instead, you have adapted and been very resilient through your life. The saying you like to live summarizes how you carry out your life. Epilepsy does not have me. Instead, I have Epilepsy.

Stay strong. Do not worry.

From,

Matthew Steele