Q:  Vivian, I understand that you have epilepsy.   That must hinder your job search?

A:  It’s part of my life. It’s something that I live everyday. In fact, it’s the reason why I was terminated from my last job. They saw me as a whole person, other than the fact that some hair was missing and I had a scar. They still didn’t believe that I had epilepsy. They put down my call in’s as “sick” when I told them that I had had a seizure. So with advice from friends, family and even my doctors, I am suing them for discrimination. Of course there were many other things that they did to me that went against my doctor’s orders that lead to my decision, as well as my treatment by managment. That’s another story altogether. I don’t think there wasn’t a thing I did to keep my job. Not to say to keep the seizures away. I met great resistance at work when it came to coming back from each treatment. I did what I had to do though. I wanted and needed to work.

Q:  But you are suing them for discrimination?  I am sure you didn’t want it to get this far.

A:  I have a very strong work ethic. It’s something that’s in my blood. I’m old school. You earn your way through life. You don’t get hand outs. You make every penny that you live on. Like I said at the beginning “Do a job once, do it right.” You may start at the bottom, but you prove yourself and you make your way to the top. I’ve done that time and again. You may not be an owner, but you get close. That’s fine with me. I’m completely happy with that. Now I can’t do that because I have this. I know that just as I know my name.

Q:  So, you don’t mind if we ask you some questions about epilepsy and how you cope with it, on a daily basis and on the job?

A:  So, go ahead and tell my story. It just shows that I don’t give up. I just know that I have limitations. I have to live with them. It’s hard sometimes. But I never give up. There are a lot of people that do. Not me. I’m a fighter. I exercise my brain so that it doesn’t become a blob and useless. That’s important. My body may want to give up, but I won’t let my brain give up.

Q:  So, tell us about the kind of epilepsy that you have?

A:  I have a rare form of epilepsy. It came on when I was 21. Only 7% of people have this. It comes with grand mal seizures and it can last for a long time. I’ve lost so much time that I can’t tell you. Sometimes, I’ve lost 3 to 4 hours. I wake up not knowing anything. I always bite my tongue and other things. Somehow, I find my way to my bed. How, I can’t explain. Lately, I’ve really hurt myself. Banging off the fridge, the kitchen table and then the constant banging on the floor. I’ve broken a lot of things lately also. Something that’s new. Tables, chairs, cd’s holders and even a finger. I’ve broken a pair of glasses and I have the scars to prove it. The bruises have all disappeared, but I remember the pain. I have a contraption called a Vagas Nerve Stimulator to help the seizures, but since they haven’t given me any warning, like in the past, it’s all but rendered it useless. It’s like a pacemaker that I have a magnet to pass over it to give me a shock to help the brain stop seizing.

 

Q:  Has anything else occurred, maybe as a result of the epilepsy?

A:  I also have a brain tumor that was supposed to be completely removed. But it decided to connect itself to the main artery to my brain. So they could only remove a portion of it. It’s not cancerous. It’s just a pain in the butt. I just have to wait to see if it decides to grow or not. Then if it does, I get gamma knife surgery. The hope  is that it shrinks. Regular surgery is out because of the location. It’s too risky. Also because I can’t handle the surgery because of my epilepsy. I had 2 seizures during this last surgery. So they aren’t going to risk another.

 

Q:  Isn’t this treatable?

A:  The other thing about this kind of epilepsy is that it can go into dormancy. So far it hasn’t. I’ve had that happen. It did for over 2 years. I felt “normal”. I had a regular job and I thrived. Oh how I miss those days. But those days are long gone. Since the surgery, I know I’m only going to working those dead end jobs, but since that’s what I have to do, I will do what the limitations call for. I hate it, but that’s the cards I was dealt. I have to live with those limitations and I can’t run away no matter how much I want to.