What is Epilepsy?
Epilepsy is a breakthrough phone call that wakes you up- no words necessary, because you know that the crash you thought you heard in your slumber was real, when it’s followed by a ringing phone…
Epilepsy is realizing when your eyes adjust to the brightness of the phone’s screen in the midnight darkness, and the name on it is your son’s girlfriend, that yes, indeed, it’s time to mobilize.
Epilepsy is opening your son’s bedroom door to what looks like a crime scene, and not hesitating to jump into action. It’s deciding in a split second to get your thigh between your child’s head and the hardwood floor he’s seizing on, to prevent further damage to his skull- and slipping on the blood that has already spilled from his head, all over that floor, to get down closer to help him…
Epilepsy is holding your 6’3, 200lb. son, who is still your baby… bleeding and unconscious, in your lap… knowing that when he comes back around, post-ictally (in that haze after the seizure), he is often agitated and confused… and at this moment, you’re isolated- behind a bedroom door alone with him, no way to move out of harm’s way quickly if things go south…
Epilepsy is looking into those big brown eyes when he does come back around… asking if he knows where he is, what his name is, who I am… then reminding him gently, soothingly of all of those things, and telling him what just happened… and no, do not move- help is on the way- and yes- we are going to the hospital- again.
Epilepsy is hours in the emergency room, in the same trauma bay as last time, with the same nursing staff, the same attending physicians, oh, but new residents and fellows this time. “Our” room.
Epilepsy is new meds, never ending side effects, trying again and again, blood tests, EEG’s, more and more office visits, more hospital visits….
Epilepsy is the loss of privileges and independence, all so very important in a seventeen year old mind.
Epilepsy is not going anywhere.
While we would never choose this path, I think we would all agree… Epilepsy has made us stronger, brought us closer and helped us find the bright side, the silver lining if you will, in even the ugliest of moments.
Epilepsy can never break our spirit. Epilepsy will never hold us back from our dream. Epilepsy is learning to find the good in every day, and appreciating the little things.
1 in 26 people will be diagnosed with epilepsy in their lifetime. 1 in 8 will have a seizure in their lifetime. Take the time to find out how to help, how to perform seizure first aid, should a seizure strike. Chances are, in YOUR lifetime you WILL witness one. Won’t you feel better if you know how to help?
Dedicated to all Epilepsy Warriors, especially The Epilepsy Foundation’s Athletes vs. Epilepsy Ambassador…. Derrik Trezza. 💜
http://athletesvsepilepsy.org/DerrikTrezza
Be Well,
Laurie