Dear Former Self,

You will have many bumps and obstacles as you continue through life, but just remember your resilience and determination has gotten you to where you are now are key things to getting through turmoil in the future.

You have had Epilepsy since you were 1.5 years old and instead of hiding it from others and being afraid of it, your approach was much different. You wanted to educate yourself about it, advocate for the Epilepsy community, and adapt your lifestyle due to side effects of medicine and Epilepsy. For example, through school, you created your own test and did in parts, with repeating of various parts, over multiple days. You did not let Epilepsy hold you back. You averaged a B no matter the subject, course difficulty, or what else was going on in your life.

Some things you did as a child, that some might not do if they have Epilepsy or another disability, are you at some point or another played almost every sport, you travelled on a bunch of mission trips to places like Wyoming and Honduras that were not right next door, and you did water rides and amusement rides.

Your Seizures had been dormant for almost 8 years and then re-emerged at the end of your first semester of your Senior year of College. Through your resilience and determination, you still graduated on time, kept your grades up, and you stayed an officer in 3 different clubs.

Then you decided to get brain surgery. After you had brain surgery, your neurologist told you that by looking at your brain, he was surprised that you had made it as far as you had and as successfully as you had. Your approach after brain surgery was, like the rest of your life, to not throw in the towel. You did a lot of volunteer work in your community and then went to two part-time jobs and then went to one full-time job in another state.

Things again seemed dormant. You went almost 8 years seizure free again, you lived on your own, you were driving, you were working full-time, and then things changed. You had seizures re-emerge and had some other things happen in your life. You did not give up though. You kept working full-time, volunteering for organizations at a local and national level, and figured out many methods of transportation.

You have always been determined not to let Epilepsy defeat you. Keep it up.

From,

Matthew Steele

Like cars on a highway,
time goes rushing by.
There is so much going on,
that often it gets pushed to another dawn.

Between everything going on in a day,
it is often hard to remember what others say.
Repetition and writing it down is helpful,
so we are not as forgetful.

Sometimes more action is needed,
so that memory can be succeeded.
Relaxing the body and the mind
is a good route to find.

What works is different for each.
For me it is the beach.
The soft, shiny sand
is one part as it sticks to my toes and hands.

Other than bathing in the sun,
there are many other ways to have fun.
I always have been someone to love the ocean.
I incorporate it into as many activities as I can.

The sun on the water glistens
as you awe at it and listen.
Like someone abruptly leaving,
the power of water makes it not always pleasing.

The waves constant back and forth is expected,
however, the currents can be unexpected.
This combination makes the ocean soothing
while also making it perplexing.

Add the birds and laughter
all through the atmosphere,
and I am put in serenity
when I am in an ocean’s vicinity.

When the sun beams
down, the sand gleams.
With the sand gleaming and the water glistening,
the body and mind relax and become fully positive thinking.

The beach makes me tranquil,
and it helps me return with an improved memory and drive still.

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