Diagnosis

I was first diagnosed with epilepsy when I was 17 years old. I was crossing the street with some friends and had my first Tonic-Clonic seizure. Everyone around me was caught off guard. When I woke up in the hospital, I was told something much worse than I had just been hit by a truck; I was told that I had epilepsy and that was my first seizure of many more to come.

Medications and Memory Loss

All you hear about when people talk about epilepsy is that it causes seizures. That was the only thing I had heard about the condition when I was diagnosed. Back then, I thought “What’s a few seizures? My life won’t change all that much.” Oh boy, was I wrong! The medications for epilepsy have so many side effects and because it’s not an exact science yet, they have to adjust and see what works best for you.

I personally experience extreme bouts of depression and extreme tiredness (especially when they put me on a new medication). But the worst part to me is the memory loss. I have experienced memory loss so severe that I could not remember some of the most important people in my life. It’s a constant battle you can never win and memories are something you can never get back.

College and Epilepsy

I was just finishing high school. I had my whole life ahead of me and thought that nothing could stand in my way. When I went to college and started my degree in education, I knew it would be hard but I was still confident. I was having about 1-2 seizures a week but I thought I was up to the task.

I was making great grades, my teachers loved me, and my classmates thanked me for the help I gave them. I was doing great even with all the lapses in my memory, the grogginess and seizures.  I had to put in a lot of extra time and effort into college, it was just something I was planning on doing anyway, but that didn’t turn out to be enough.

I was at home one day, had a seizure, fell down and fractured my neck. I was in the hospital for more than eight weeks. After all the hard work I put in, just like that, one seizure caused me to withdraw from college and stop pursuing my dream of becoming a teacher.

Personal Life

My life had taken a complete turn from knowing exactly where I was headed and how to get there, to not knowing where I was headed in life and not caring where I was going. I wasn’t going to become a teacher, I wasn’t going to move out of my parent’s home anytime soon and since I had epilepsy, my job options were extremely limited. Friends of mine were all moving forward in their lives and I was just too much of a burden to keep up with at the time.

Since I couldn’t drive, people would have to pick me up to go do something. The side effects from my medications had a major impact on my mood and some people were uncomfortable seeing me have seizures all the time. Slowly but surely, I was losing all the important people in my life.

Finding Peace at the Epilepsy Foundation

The way my life was going, I didn’t think I would ever find peace. No one understood me or my problems. Even some of my friends and family didn’t really understand how much epilepsy was affecting me. With enough people telling you the wrong thing, you eventually start to think it’s true.

When I went to my first support group, I felt both jealous and ashamed. Seeing all the people there with epilepsy and how they still managed to find happiness and a place in the world made me think about what I was doing wrong.

The first couple of times I went I could barely tell everyone my name and all I did was listen. Some people talked about the good experiences they had and some talked about the bad. No matter how different each story was, it seemed as though they all came from one place. We all may not have had the same experiences but we all shared the same epilepsy story.

The more I went the more I opened up and the less ashamed I felt. Eventually, I started going to Epilepsy Foundation programs like Studio E, and the Walks to End Epilepsy. I even took advantage of their counseling. I started reconnecting with my family and sharing with them what I was going through.

Giving Back

Volunteering for the Epilepsy Foundation Central & South Texas was one of the greatest joys I’ve ever had. Seeing all the other volunteers and staff made me feel important to so many people as if there were people out there not affected by epilepsy who understand.

One memory I can’t seem to shake is how I used to act when I came in, so shut off from the world. I still see that same shut down look from people when they come to the Epilepsy Foundation for the first time.

It takes bravery to stand up and say you have epilepsy and not everyone can do so easily at first. At every support group meeting, I do my best to seek out new support group members and make them feel welcome.

Now, I am proud to say: I’m Michael Jackson and I have epilepsy!

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