My name is Jared Evans and I’m an epileptic. Before I go any further, let me just say in no way do I let that define who I am as a person or as a child of my God.
As a senior in high school (1998…Wow, I’m old!) I, as many high school seniors do, felt invincible. That was until state championship week and having a massive concussion in a basketball game changed all that. As I entered the ER, we had no idea what we would find: an abnormality and a cortical dysplasia.
The doctors were sure that there would be no long term effects and that I could carry on with a “normal” life. My “normal” life began when in the middle of the night I had what seemed to my older brother to be an unresponsive night terror. We found out later that I had my first grand mal seizure that night.
They took me into the neurology unit at the Medical University of South Carolina (MUSC) and to a 18 year old kid who had grand ideas and big dreams for life I felt no way could there really something wrong with me. I remember my mom sitting in the room with me and the doctor telling me I had epilepsy. I looked out over the Charleston Harbor and knew things were about to change but I had no idea how much.
Over the next 7 years I experienced 9 different medicines, none of which helped or made me feel like a zombie. Then the unthinkable for me happened. I was at work and had my aura and the next thing I was aware of was my parents next to me trying to explain to me what status epilepticus is as they stopped counting the seizures after 100. I felt like I had been hit by a bus then dragged behind it.
After a horrible time with controlling my seizures (as I would cluster them by having anywhere to 4-6 in one sleep cycle a month) the neurologists felt as a “misdiagnosis” was needed and determined I was undiagnosed with epilepsy. They began to say that I was “faking” or “making it up”. That hurt more than anything. To have something as devastating as a seizure and people not believe its for real. That is for attention. It’s the worse thing imaginable. I began to feel horrible about myself. Then I started to question myself. Am I faking? Am I manipulating my mind to do this?
That was until my wife video taped an aura seizure and postictal state. Then the doctors admitted they were wrong and re-diagnosed me. My seizures continued and I neared the 300 seizure mark in 7 years. Finally I was a candidate for the vagus nerve stimulator in 2007. HOPE!!!!!
I heard great things about it, so my wife and I decided yes…lets do it. My seizures continued but instead of 4-8 one night a month I went to 2-3 every month or two. However my neurologists didn’t want to increase the level so they said had another solution…take more meds.
By 2009 I had gained 30 lbs of water weight and was on 4000 mg of depakote a day! My mood changed, I’d get depressed and felt sorry for myself. I began to feel that I was such a burden. My church prayed over me. I questioned God, even argued with Him. Why? Why me? Why do I continue to have these?
Then myself, my wife,and daughter moved up to West Virginia…we met a fantastic team as they started from scratch to help overcome my epilepsy. EEGS & MRI’s showed amounts of epileptic tissue. So what next? Brain mapping, service dogs, surgery were all potential options for increasing for my quality of life to improve. Then they said sorry, Jared, the epilepsy is too far scattered over your brain. You wouldn’t be able to function.
I cried. So I have to stay like this on this 4000 mg of meds and knowing my seizures aren’t stopping. They started different meds. Used my VNS for controlling and the meds play sidekick. It was a victory!
I’ll take it. my job ended up taking us to Lima, Ohio and you can believe it my seizures came with us. Then 2 years ago while at work my speech began to be slurred and I started getting weakness on my right side. Immediately everyone thought it was a stroke. But after various tests I was informed my seizures were taking a toll on my body as at that time I had experience over 600 grand mals in my life time. My speech and right side were affected by the number of seizures.
I thought seizures were rough, I had no idea how tough speech therapy is when you know what you want to say and its not coming. But I am more than a conqueror and I overcame. After that my VNS was turned up and they had me on a mixture of 2 meds. And I can say up until 2 weeks ago I was seizure free for 18 months!!!!
If one thing I have learned in these past 14 years living with over 645 seizures is never lose your hope! Never!!! Start every new day as a new day thanking God that hey I didn’t have one last night. I get to see my wife and 3 beautiful daughters today. I am who I am, seizures just add a little bit of character to it!