After reading Becoming Comfortable with “My” Epilepsy: Strategies that Patients Use in the Journey from Diagnosis to Acceptance and Disclosure I think it’s important to recognize that first, epilepsy is not an easy thing to deal with and that we all have different methods of coping with it.
The first time I remember being told I had epilepsy was in my aunt’s house, it was either in the kitchen or living room, I’m not really sure right now. I’m sure I was told before, but that was the first time it made sense to me, the first time I can remember. As they told me everything that went along with that, like the dos and don’t of epilepsy, my first reaction was “what do you mean I can’t drink? Like never?” Now let me explain that reaction, that was right after graduating college meaning I had spent a few years going out and drinking with my friends. I thought, I’m gonna be left out if they’re drinking and I can’t go, but that was still the mind of a college student.
At that moment I also thought, well what harm can one drink here and there do? Well, a lot, like causing more and worse seizures and now look at me, five years later having had zero drinks since at least May 2, 2012, the world hasn’t ended and I’m two years seizure free. Now I’m focusing on being healthy and by that I mean I’m working out but I’m still eating (I can still feel the cheeseburger, fries and onion rings I had for lunch in my belly) but I do two workout videos every day and walk my dogs.
Apart from the drinking drama, I really wasn’t sure what epilepsy meant or how scary it was because I didn’t recognize when I was having a seizure or remember after, I just knew I was tired. After seeing my family’s reaction to it when I woke up and not remembering anything, I realized it was a very big deal and I was very scared. I was always scared I would have one. It wan’t until the last few seizures, three years after my diagnosis, that I started to be aware that I would have one and the last seizure I had was the only one I was completely conscious and I remember everything, From the aura, to the movement of my arms and legs, my thoughts during until the end; it was horrible because I couldn’t control it even if I tried. It felt like it would never end but I knew I was going to be ok because I wasn’t alone. That whole memory is horrible but I’m glad because that memory will always keep me aware of the fact that I cannot ignore my medications or anything my neurologist says. This is serious and I cannot take it like a joke.
Since I was told about my epilepsy, I haven’t been afraid to talk about it because that’s just a part of who I am now. It has cost me a lot, like the ability to live alone, getting my master’s degree, getting a job, being able to drive, or whatever, life goes on and I can’t stop living it. I had to find a way to cope with this and the best way for me has been what I’ve said since my first blog post, writing about it, reading, sharing my experience with others and hopefully helping others. It doesn’t matter how, whether it’s sharing information, helping them feel understood, listening to them (reading comments), or anything else.
Don’t be afraid or hide it, be brave and embrace it, after all we have to live with it so make the best of it.
What’s next? Can people with epilepsy live on their own? What problems might they have? What if they need more help?