From the blog editor: This week Tabitha Johnson has contributed her thoughts about living with epilepsy. We thank Tabitha for this reflective post about her experiences.
Here’s What I Know (about Epilepsy)
I was diagnosed with epilepsy when I was 15 1/2.
Since then, I’ve seen the ins and outs of emergency rooms for multiple reasons due to this thing. I’ve been down, but now I’m stronger than I have ever been because I know I can’t change this.
I know I have to look to God for my strength, and keep going no matter what may come. I pray every day for more research on this disorder and cluster of disorders. The brain is such a complex and intricate thing, but with research and study a cure is possible. I mean, look how far they have come with cancer research.
One thing I always tell people is “I hate the word epileptic because we’re not epileptic.” We are people with a disorder that affects certain parts of our lives. Some people with epilepsy can drive – some can’t. Some can run and jump, skip and hop, and play; others are too medicated to do so. We are people … we’re just like anyone else. Calling someone epileptic is like calling someone Band-Aided because they fell and scraped their knee. When you define a person by something, they might feel they have to live like that. We’re just people with a little bit of a problem that won’t go away.
I know you can’t live in fear of epilepsy. You can’t live in what ifs, whys and possibilities. It’s boring and not fun. I live my life because quite frankly we’re not promised tomorrow or even the next ten minutes. I’ve had a seizure where I’ve stopped breathing. Now I know that life is temporary … that every breath I take counts. So I know to make my life count.
I know to live within the means of my doctors’ orders, but I don’t stay stagnant. I live it up, I have fun and I’m happy. At first, after I’d have seizures in public, I wouldn’t go out for a while, or talk to my friends. I would really beat myself up about the seizures. Sometimes when bigger seizures happen, which thankfully are not that frequent, I still beat myself up. But I’m not as hard on myself as I used to be. After a bigger seizure, I sleep for a while, then I try to bounce right back. I get back to work, go back to church and get back involved. As I’ve said, we’re not promised tomorrow or the next 10 minutes.
The past two years have been one heck of a journey because my body started rejecting different medications. I can’t even tell you how many doctors I have seen. I’ve lost two jobs. I lost my license, my apartment and my car. I’ve bounced around place to place due to losing everything and being sick. But one thing I can say – I know I’m stronger now than I’ve ever been. I know that I am the person I am today because of the hell I’ve faced during the past two years. So, yes, I count it all as a blessing. Do I know what’s to come? No. But I know I’ll live, I’ll smile and I’ll count every breath as a gift.
I know that I am incredibly blessed with the people in my life … my sister … my church … the Epilepsy Association. I’ve always had someone by my side calling me or texting me.
Finally, I know that we have to talk about epilepsy. We have to post about it. We have to make people more aware about epilepsy. I know people need to ask questions about epilepsy, so many questions, in fact, that it blows up Google. Will you help me talk about epilepsy?