I didn’t start having seizures until I was twenty years old. That was in 1996. The first seizure that I had I was by myself, sitting on my bed, sorting through papers waiting for a friend to show up. Suddenly I had this strange feeling come over me that pushed me back on my bed and I couldn’t do anything about it or even yell for help. I blacked out and over the next thirty minutes or so, I would come to and then black out again every few minutes. When I would come to I couldn’t see or feel anything - but I could hear the papers on my bed rustling. The thought just kept going through my head, “This must be what a seizure is like.”. When I came out of the seizure, I told my mom what had happened, and she took me to the hospital. They did blood work and a CAT scan, but everything came back normal. Because no one else had witnessed it they chalked it up to a “fluke” - which they were not sure had even really happened.
Ten days later I woke up and I had another seizure. My mom witnessed this one so when we got to the hospital, they took it more seriously. They did more blood tests and another CAT Scan which both came back normal. I didn’t have a history of a brain tumor or head injury – no family history of it either - so they ordered an MRI and an EEG - both of which also came back normal. It was at this point that I was diagnoses as “Epileptic”.
The first medication they put me on, Phenytoin, worked well. I did the normal routine for the next year: didn’t drive, got my blood tested every three months. After a year I hadn’t had any more seizures so they started to wean me off the medication. Once I was off the medication completely I started having seizures like crazy, so I have been on medication ever since. At one point they tried to switch me to a different medication, and that actually caused me to have more seizures. So they put me back on the Phenytoin, and I’ve been on it ever since then. There are newer drugs on the market that don’t require you to get your blood tested, and which are not as extreme in terms of keeping track of your levels, but I decided that since this works for me, this is what I want to stay on.
I have also discovered that I have two different types of seizures. I have grand mals - in which I pass out, and they are brought on by increased lack of REM sleep. Then I have partials - which affect my head and my right arm. (This is how every seizure I have a starts.) Sometimes these will continue on to a grand mal, or it may just be my head and arm - and those are brought on by getting really, really stressed out.
I am very lucky in the fact that I do still have a driver’s license. So if I don’t get enough sleep one night, I have to make sure to get more the following night so I don’t cause a grand mal. I also have to be very aware of how stressed out I am getting and where my stress levels are at. At times I have to just let go, take some time for myself, regroup, center myself and evaluate the feelings that I’m experiencing. I have to get myself back into balance so that I don’t have a partial.
I refuse to let epilepsy control my life in any way. My bosses, the people that I work with and my friends all know about my condition but I never make it the center of the conversation unless somebody asks about it. I do inform them so they are aware of the possibility so that they are not overly concerned if it was to happen in their presence. However, I don’t let it become the center of my life. If they ever want to have a dialog, have any questions, or want to talk about my situation specifically I am more than willing to share that information with them. When I was first diagnosed, a lot of people kept saying over and over how sorry they were for me. They tip toed around me. I didn’t want sympathy because it didn’t change who I was as a person, it didn’t change my personality, it didn’t change the way I thought. I liked all of the same things, I liked the same movies, I liked the same food; I was the same person. This was just like something that happened on the side and I didn’t want anybody to think that my condition changed me at all in terms of who I was or what kind of person I was. So I don’t let people feel sorry for me because I have epilepsy. And that fact helps me to try to be a better person every day. I want to be the best person I can be, not in spite of the epilepsy, but since I do have epilepsy. I’m pushed to a higher point because I don’t want to be looked at as a weaker person. It didn’t change anything about my likes, my dislikes or my personality. I just have to do things a little differently to control my stress and being diligent about getting enough sleep. I don’t act any differently because of it. It’s just one of those things I have accepted that I have to deal with and that’s fine. We all have one thing or another and luckily, I am able to control this.
I work as a massage therapist and also as a caterer. Both jobs are slightly affected by this condition. I have found that the scent of rosemary make me feel as though I’m going to have a seizure. Although it has never brought one on, my body has the same feelings as if one were starting when I smell it. Therefore I have informed everybody at work that if they use any of the rosemary essential oils, they need to let me know so that I can keep my distance, and they are great about doing that. I do miss out on a massage from time to time if the rosemary scent is something a client requests, but I’m ok with that. If somebody wants that kind of massage, I want them to receive it – even if it’s a regular client of mine, but I’m not the one who ends up giving them that massage. I experience the same thing with some of the recipes while catering: if rosemary is one of the ingredients, I just trade recipes with somebody else or I have somebody else add it after I have left the room and it’s no big deal. I don’t let it become a barrier in my life. It is what it is. I’m actually grateful that I have it because it has taught me so much. I have met some great people because of it, I’ve learned a lot about the human body, about the brain, and about things we need to do to help keep our lives more healthy. I love the fact that there are support groups out there and that there are new medications and drug trials. There’s new studies coming out all the time, and I make sure that I keep up with the research and keep myself informed so that I can not only help myself but also other people around me.
I’m actually very grateful that this has happened to me. As unusual as it is to develop epilepsy as an adult and even more-so that we don’t know what caused it, I firmly believe that this happened to me for a reason. I know I will have to deal with this for the rest of my life but I love the fact that I can inform others about something that has such a stigma attached to it, and that people can see that those of us with epilepsy can live absolutely 100% normal lives. It’s just something we live with and something we deal with. Everybody has their own set of trials. I love that I can encourage others and give them hope that they too can live perfectly normal lives. For that I am grateful to have developed epilepsy.