Originally posted on http://www.livingwellwithepilepsy.com
This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay.
Whitney’s Story
Sunovion is proud to feature #MyEpilepsyHero Whitney Petit, author of this post, who offers a window into the ups and downs she experienced while living a life with epilepsy at a young age. Whether you’re living with epilepsy or a parent to a loved one, we hope these letters give a glimpse into the feelings and experiences common for young ones and the support needed to manage childhood and teenage years with epilepsy.
Dear Young Whit,
I write this letter to you as I enter my favorite time of year. Fall. I love the fall season because it marks the time, whereas an adult, we find our purpose. That thing you’re dealing with now, the constant headaches, the involuntary body movements, the blank stares, the many doctor appointments, those things will be the things that empower us to fight for others in the future. Just stay with me throughout this letter as I reflect on what got us to this point. I’ll hope to encourage you never to give up.
In the 1st grade, you will have to overcome some obstacles. You will experience absence seizures during class times. Teachers won’t understand or even try to understand. Their lack of knowledge will lead them to “correct” you by hitting you with fat pencils on your knuckles. Understand that it is NOT your fault. You are doing nothing wrong. You may feel as if you’re broken or less than. The seizures were setting you apart from the other kids at an early age. Many times, mom would need to remind the teachers that you are living with a neurological condition that you have no control over. Even in those situations, don’t forget to smile. Hold your head up and continue to be that fantastic kid you are. Remind yourself to unclench those fists and take every situation as it comes.
There will be many medications. Work with your epilepsy specialist and take them. I know it’s annoying, but they will help. Treat overnight trips to the EEG labs as an adventure. It will all be worth it in the long run. You will become a dancer and be amazing at it. During the journey of dance, the seizures will seemingly go dormant. You will notice they will happen less and less. You will find freedom but still, operate with caution. Just never let the fact that it can happen at any moment stop you.
Whitney, know that it is okay to tell your friends. Let them know that you are living with epilepsy. Share with them what that means and that you are still the same person that they have grown to know and love. To get the world to understand that anyone with a brain can have a seizure, we must start sharing our story with our peers. By the time you reach middle school, you’ll be interested in cheerleading. In high school, you will take a step back from dance and cheer but find a love for writing and journalism. Hold on to that; it will come in handy in the future. Don’t ever give up on yourself. You are a warrior, a fighter, a champion.
If I leave you with anything, I’ll leave you with this. The best relationship you will have is the one with Mom. She will always be your protector, your fighter, the one who stands up for you through all the storms, the seizures, the recoveries, the doctor’s appointments, the failures, and the triumphs. She will be your haven. Even when you get upset with her for not getting your way, know that it’s always in your best interest. No matter how far you travel, no matter where life takes you or when the seizures come and go, you can always find a home in her.
Remember to learn to take care of YOU before you try to save the world. I promise this will allow you to be a greater champion in the long run! Self-care is the best care, girl.
-Whit
© 2019 Sunovion Pharmaceuticals Inc. All rights reserved. 10/19 NPC-APT-US-00015-19
This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay.