Nobody can prepare you for epilepsy, the sadness and confusion when you inevitably feel you are fading as a person after each seizure. The strange and overwhelming emptiness that will eventually come over you when you understand the things that made you who you are cannot be remembered, and are not there anymore may become unbearable.
Are you yourself anymore? Will you get those things back? Maybe you’ll be like me, not even remembering what they were, only sensing shadows of your former self until finally you decide you are not yourself anymore and are instead somebody new, maybe not necessarily somebody who you wanted to be.
People you confide in, people who love you with everything in them, will not understand. They will try but they aren’t you. You may not even be sure if you are you. They will offer to help you find these things that are missing as if they are pebbles in the sand. It doesn’t work like that, you will say. They will tell you when you rediscover them it will be like doing it for the first time. This might break your heart because you will see they could never possibly see the things that made you who you were are floating in the ether of space, of your mind, and you are trapped.
You don’t want to do these things for the first time again. You don’t even want to remember what they are some days because the pain of forcing yourself to confront you, a you that you may not be able to be anymore may literally kill you. You might feel more alone than ever before…but the truth is that you’re not.
There are others with epilepsy. And there is you. Even when you want to give up, give in, do anything it takes to end it, maybe you will remember those who rely on you. It could be somebody as simple and naïve as your dog, but they need you, shaking limbs and all.
A strange calm may come over you as you realize even if you are an empty shell of the person you used to be and the disease it taking things from you with each seizure, you can rebuild. And you can start by loving those around you who may not understand, but who are trying like fuck to keep you alive and keep you going.