My battle began at a very young age I was only 6 when the nightmare started. I can remember very thing like it was yesterday. I was at my grandparents visiting and playing with my cousins. My one cousin an I were playing like we were in the WWF. My body started shaking all of a sudden. I didn’t know what we was going on. My family called for an ambulance, but by the time they got there I stopped. They said I was fine and left it at that. Little did I know this was only the start of a life long battle.
A few weeks after the incident at my grandparents house it happened again. It was a few months after my mom got remarried. I had just asked her if I could get some ice cream. She said yes. I was in the freezer getting the ice cream, I started to feel weird. Like my left arm was all tingly but it wasn’t the sleep kind. I yelled for my mom and by the time she turned around I was on the floor shaking. I remember the panic in her voice as she told the 911 operator that her baby was having a stroke. After I was done shaking I couldn’t move my left side. I was taking to the hospital but we left with no answers.
They decided to put me on seizure meds. The first seizure Med they put me on what’s phenobarbital. I ended up with softball sized hives because I was allergic to it. It took months for the hives to go away. All they did was switch medicine after medicine to see how I react to them. Needless to say I was allergic to most. I remember going to doctor after doctor to trying to get answers. No one had any answers or what was happening to me. I went to hospitals all over the country. I remember being at Cleveland Clinic with my mom and my grandfather and just walking out after doctor upset my mom. The doctor told my mom I had nothing but a brain tumor. My mom knew better she pick me up and left.
They got my seizures under control during the day so I could back to school when it started. the only thing I was held back it will be going to a different school because the boundaries the changed. Before school started we had a meeting with the principal and some other people. I was told not to tell anybody about my epilepsy. The school made me feel shame to have it. So I hid it for years, there’s only a few friends that actually knew I had it. In 7th grade my seizure started getting a bad again. It was getting harder to hide the fact that I had epilepsy. So I ended up telling a few more friends, but they stopped talking to me because they thought they could get epilepsy for me. That’s when I started mostly keeping to myself.
My seizure started processing more and more, so we decided to change neurologist. This neurologist was freaking awesome. He did more testing and found out what was causing my epilepsy. My epilepsy is caused by a lesion on my brain. which is a dead spot on my brain that collects electricity. When it releases the electricity that’s what causes a seizure. This neurologist also made me aware that I would never outgrow it and I would probably need brain surgery in the future. He also told me how dangerous it can be because of where my lesion located. It’s located on my motor strip and it never did that type of surgery on anybody yet.
My epilepsy was pretty much under control till about junior year. Halfway through junior year the seizures got bad. I was sent him one day and I was told not to come back to school because I was a danger to myself and others. Only then because I had a seizure in the nurse’s office. I wasn’t given a chance to tell my friends good bye or why I was leaving. I just felt like the school was trying to sweep me under neath the rug. They put me on Homebound and sent tutor and every day.
My senior year I wanted to get back to school and graduate with my friends. The first day of school was going great, until I started feeling a bit funky. I knew it was going to be coming. I was going up the steps by the pool in the feeling.and the feeling got worse. So I sat down where the pool door was, because I knew I was going to have a seizure. So here I am having a seizure by the pool door and Ryan sees me. He freaks and gets a teacher of course. The school told me again I wasn’t allowed back in school. and that’s the moment I made a decision that would change my life forever.
At my next doctor’s appointment I brought up the brain surgery. I told him I was done I wanted a normal life. So here it for me down to John Hopkins. Which I went down for testing a couple times a month sometimes for about 6 months. Until they scheduled my surgery. All my friends we’re getting ready for prom, and I was getting ready for brain surgery.
The night before my brain surgery we ordered us to The Cheesecake Factory. I remember I got calamari and strawberry cheesecake. It was kinda of a last supper for me. I had a huge support team that came with me. It included my mom, step dad (Todd), my boyfriend (Kris), my Aunt Angie and Uncle Craig. Also both of my grandmothers where there or visited after.
I remember saying good bye to everyone right before they took me into the operating room. I remember the tears in their eyes. I guess the surgery took 10-12 hours. I had a hard time waking up from the anesthesia. They were getting worried cause I wasn’t waking up. When I didn’t start to come around I remember Todd and my uncle Craig being on my left side, and my dad and pap on my right side. I thought I was dreaming my dad passed when I was 3 and my pap passed when I was 15.
I ended up have 2 brain surgery over the 3 months I was in the hospital. My family back home would send care packages and come see me when they could. I felt so alone most day even when I had family around. No one could understand what I was going threw. I just wanted to be home picking out a dress for prom. I cried myself to sleep most nights.
The day I got to come home I was so excited. I missed 3-4 months of time with my family. I got home and everyone treated me like I was glass, even my boyfriend. When I got home most of my head was shaved. Kris’s mom Paula shaved the rest for me. She cried the whole time.
My brain surgery was to help lessen my seizures, but it didn’t. In fact in it made me a lot worse. I went for having 25 seizures a day to 100+ a day. So needless to say it didn’t help at all. I was at my breaking point then.
That’s when my neurologist brought up an experimental procedure called gamma knife. Which is radiation that would shrink the dead spot on my brain. So needless to say I jumped as an opportunity. Which meant a few months more testing. I didn’t have the procedure done in till 2004. They only gave me a half dose because he never did anything to anyone on the motor strip.
Six months after the procedure my seizures were almost non-existent. I would only have them at night mostly. Around this time Kris broke up with me. I guess he couldn’t deal with my epilepsy. I don’t really blame him though. He just didn’t give the procedure time to work.
My epilepsy was basically control for the next 2 years. My sister’s decided it was time for me to start dating again. So I did the whole online dating thing. I met a nice guy named Matt. The first time I had a seizure in front of him was 3 months after we were dating. I looked at him as like if you can’t deal with this just walk away. He told me he wasn’t going anywhere. Things were good till the seizures started getting bad again. Matt started working more to avoid it I feel.
My doctor started talking about the second half of gamma knife. Since I only had a half a day so I can have it again. Matt said if you want kids so you need to do something. I went a head and did it for a second time. Six months after my left side started getting weak. This is right around my younger sister’s wedding. All I could think was don’t have a seizure and don’t trip as I’m walking down the Isle.
About 6 months I want completely paralyzed on my left side. I couldn’t move it at all. So they transferred me to UPMC Presby to figure out what was going on. It happened to be a side effect of the gamma knife I I had for the second time. I had to go through extreme rehab to get what little movement I have. By this time I only seeing Matt a few hours a week. That went on for a few years till i hit my breaking point.
So now I’m only partially paralyzed on the left side. I can walk some but not a lot most days I’m in my power chair. I think I wanted it there to prove doctors wrong because they said I’d never walk again. I like when people underestimate me that just means I get to prove them wrong. I have a wonderful boyfriend Jesse. He goes to every doctor’s appointment with me. Without him in my family I don’t know where I would be. We recently made a decision together that I would not attempt to get pregnant because it’s way too risky. It can make my epilepsy worse. And right now I’m having a seizure every couple months so it’s not too bad.
I learned a lot for my epilepsy. It’s not a condition for the weak. It’s something I’ll be battling the rest of my life. Weather I take it day by day or minute by minute. next year my battle will be going on for 30 years. I’m thinking I’m getting on epilepsy Warrior tattoo for battling 30 years of it. I’ve learned people say they’ll be there for you and they walk out when you need them the most. I’ve learned I’m stronger than I think I can do anything I put my mind to. It might take me a little longer to get there but I’ll do it. I hope you learn from my story.