What I've learned from living with a brother who has epilepsy.

My brother is 4 years younger than I am, which is why I have always felt sort of protective of him. We found he had epilepsy two years ago when he was 15. Back then, we used to live with our parents, but they weren't at home when it first happened. I was totally freaked out, and I had no idea how to react. He was lying on the floor, shaking, not breathing, his face was turning from pale to purple and I thought he was dying. My other brother took him to the hospital while I stayed at home, scared as hell, in tears, waiting for my parents to tell them what was going on.

A year after that, I got a job and left my hometown. A few months later, he came to live with me and that was when my protective instinct came stronger. Anyway, he's not the kind of boy who lets people take care of him. He's a teenager, and as such, he's kind of a rebel, though with a big heart. It's difficult to look after someone who doesn't want to be looked after, but that's my responsibility, at least in a way.

Even so, I have learned some things from this whole experience:

1. I can't make him do anything he doesn't want to do: If he wants to eat take out every day, he will. If he wants to stay at the computer until late at night, he will. If he wants to go to college on his bike, he will. I can't help but worry sick when he does it because I know it's detrimental to his health, but I understand I'm not his mother, and I can't force him into anything. I do my best to keep him safe, through small things such as making sure he takes his pills and keeping the fridge stocked with healthy food, but he's not my son and we both know it.

2. He doesn't like to talk about it: Which doesn't mean we ignore it. We're both aware he has a condition, and he knows what he has to do about it. If I force a conversation every day about how he feels, he'll be annoyed and retrieve even more, so I know that I have to be discreet and trust him.

3. But I've learned to read the signs: Epilepsy came to our life as a slow rain. My mother had it when she was young, and my brother had some small shakes on his body before the first seizure. Nothing, not even knowing it can happen, prepares you to react when it happens for the first time, but from now on, I know what I have to look for if I suspect that it's coming. Maybe it is a shake or a headache. If I notice it, we can prepare for it.

4. Right when it happens, I have to react: It is pretty impressive, in the worst way, to watch someone while they're having a seizure, especially because there's nothing you can do to stop it. But there are some other things you can do to help them get through it: put a pillow behind their heads, make sure they don't hit anything that can hurt them, stay with them and have a plan to run to the hospital if necessary. 

5. He is not epileptic, he has epilepsy: Whether he avoids the topic or not, epilepsy is not a part of his identity. There are things much more important in my brother's life. He wants to be a vet, and he works for it every day. He is brave, rebellious, sweet, messy, smart, and a billion things more important than whether or not he has epilepsy. And I love him for everything he is.

These are small lessons I have collected during the last couple of years, and although I know I am far away from being a perfect sister, I believe in our capacity of getting through it if we stick together. I am not an expert, I don't presume to know better than he does. All I can be is make sure that he knows I am present and I will never leave his side.