From our partner Carmen García
If you have a chronic disease, like epilepsy, as a child you think that “when you grow up” you will be fine. But one day you grow up, and you’re still the same. You wonder if you will ever be cured, if you were lied to as a child, but there is only one thing you can do, look forward and get on with it.
That day was not particularly hard, I just shrugged my shoulders and thought “well, let’s keep it that way”. Fight it, it can get better, but it’s not going to go away. I had a period when I was not really fighting it, taking medications, following the rules, but I was not in the hospital all day long, trying different things. I was also instructed to write down the crises, but I didn’t do it.
When I started to be asked more than “we will increase your medication”, I became more involved, because I saw that they were more involved. It is very hard to go to the doctor again and again, thinking that he is going to help you, that he is going to worry about you, that something is going to change… and that he will only give you a drug or increase your medication.
Naturalizing epilepsy seems to me to be key, to say it without a problem and without us crying, we don’t cry because we have glasses or because we are allergic to something.
You also realize that your problem is not so serious when you look at the world around you, other disabilities and how they affect the lives of those people. There are many types of epilepsy, many types of seizure dyscontrol and many people who don’t just have epilepsy.
Many people ask me how I am not afraid, how I live alone, how I ride a bike…. But I think of people who can’t see, people who can’t move on their own, people who will never be able to be independent from their parents…. and I say ….. Afraid of what, of falling off a bicycle, of getting burned by a fire while cooking? That can happen to anyone, can’t it? And hasn’t it happened to almost all of us?
Naturalizing epilepsy seems to me to be key, to say it without a problem and without us crying, we don’t cry because we have glasses or because we are allergic to something. We are all, in one way or another, disabled.
