A Letter to My Younger Self, Preparing Me for Epilepsy

To this day I’m the only one who put my elementary school on lockdown, all because of a seizure. The sad thing is, I don’t remember any of it as I was heading to the hospital in the ambulance. Those first few seizures knocked me out for hours, and had me recovering for days. From when I was first diagnosed, I faced a second life challenge I couldn’t wait to take on. As a young kid, I was faced with a new normal that not even I was familiar with. I wanted to write a letter to my 9-year-old self about everything that would be coming my way.

Other relevant stories:
• Can I Smoke with Epilepsy
• Autism and Epilepsy
• Can Epilepsy Come Back After Years 

Dear Kyle,

I know you’re slowly recovering in the ambulance from something you just can’t figure out. Let me fill you in on it. As you were walking out of the classroom to get something from your backpack, you had your first encounter with epilepsy. Yes, that’s right, you had a seizure. After numerous tests you’ll get done at the hospital, the doctors will finally let you know. In a day or two, you will be back to your normal self. You will soon forget about the seizure and carry on with your school year. However, I warn you not to forget about me too soon. I’ll be back.

Sorry, but I warned you about me and how I may come back. Over a few weeks, you experienced how strong seizures can be. You were driven home by your dad a few times and spent much more time in the nurse’s office. I give you credit for playing some Little League games on days when you had seizures.

After multiple seizures, doctors finally diagnosed you with epilepsy. Please don’t look at this as a bad thing. You’ve overcome many challenges already, and this is just another one to beat. Get ready to find that perfect neurologist. It may take a few years, 10 maybe.

Those epilepsy medications are going to seem like a pain, but definitely necessary as you move forward. Don’t forget the power of trial and error. Your doctor will help you mix up medications to see if you can find that perfect recipe! Believe it or not, your seizures will get better to some extent. You will enjoy partial seizures. They come and go whenever without any auras. Be prepared for days when you need to rest after having 30 in three hours. You will get used to all this, it’s life.

Your parents are scared to death, maybe not so much your dad. No one knows what to do or expect. First thing first, research! Research neurologists, local associations, and other support groups where you can get advice. They will be by your side the entire time, even when you head to Cleveland for school. You will gradually find out there are plenty of treatments for epilepsy. To get the best one for you, be open with everyone. If you’re not feeling too great, you probably should say something. Help each other out through this weird process that has become your norm.

Now, epilepsy is also just a word. Epilepsy won’t define you, so feel free to take some chances. Wrestling was a chance you took that paid off greatly. Going out of state for college was a risk both you and your parents took. It was one of your best decisions and ultimately because you opened up about your epilepsy. Sharing your story brings people together, and it helped you strengthen your friendships while away at school. Driving is cool and everything, but you really don’t need to do it. What’s cool is having your own personal driver, actually multiple. You are not a burden on anyone just because you can’t drive.

Having epilepsy isn’t a bad thing at all. Speak up and let everyone know how tough of a battle you’re going through. Epilepsy gives you the ability to meet thousands of people across the world who will be there for you when you need it. The epilepsy community is a strong one and you will be very involved in it one day. You may have epilepsy, but it doesn’t have you!

You were a wrestler, so meet your opponent, epilepsy. As of now, you’re kicking its butt. Warriors don’t quit and I see that in you.