Josh Provides - Epilepsy Assistance Foundation

By Valerie Leech

I was diagnosed with epilepsy twenty-two years ago when I was twenty-seven years old. My doctors found that a virus had gotten into my spinal fluid and traveled into my brain. I was in an induced coma for a month because they couldn’t get my brain to stop seizing. When I came out of the coma, I had to remember how to do simple things like walk and talk again. Luckily, I was able to relearn these skills that I had taken for granted.  My challenges are ongoing; I have severe memory problems. I can’t remember many things that happened before I had epilepsy. Things that happened years, months, weeks and even only days ago have gone from my memory too. I have a lot of trouble just remembering simple words.

My seizures are the complex partial type, and I don’t have any type of aura, or feeling, to warn me that a seizure is coming. There are times when someone will be looking at me and asking me simple questions like if I know my name or if I recognize them. They tell me it’s because I’ve had a seizure and want to know if the seizure is over. If there is nobody there to see me have the seizure, I usually don’t even know I have had it. My seizures happen while I’m awake and in my sleep. Sometimes I stay sitting or lying down and other times l get up and walk around.

Losing my job and driver’s license due to the seizures are two of the hardest things I have had to cope with. I can’t just run to the store to get something I need whenever I need it. I have to wait for someone to take me now. Even just getting together with friends is difficult at times. Fortunately, I have family and friends who help me with almost anything they can.

I have a vagus nerve stimulator (VNS) implant and recently got a responsive neurostimulator (RNS) implanted in my brain. I also take anti-seizure medication. I’ve been on several different medicines through the years and many of the side effects from them have been hard to deal with. My seizures have decreased and haven’t been as intense through the years, but unfortunately, I still experience them.

Talking to other people with epilepsy is great. As a member of the JoshProvides Epilepsy Support Group, I can help others and get help from them. It’s wonderful to have that community feeling and know that I’m not alone. Teaching people about epilepsy is wonderful too. Most people don’t know there are types of seizures other than the grand mal, so I like to educate them that there are many types.

Epilepsy has made me feel very isolated over the years. It’s hard to make friends and feel like I belong. JoshProvides has allowed me to connect with other people who face similar challenges, so I no longer feel alone. Being part of the JoshProvides community has helped me deal with my doubts and fears and has given me the courage to share my experiences with others.

I don’t let epilepsy stop me from doing things. If it’s something I want to do, then I do it. I try to keep a good attitude with a smile on my face and everyone else’s too.

Now I realize that having epilepsy is a tough part of my life, but I won’t stop fighting.  I’m living the best life that I can!