My name is Adam Karpinen, I’m 31 years old, and I have had epilepsy for 18 years. I was 12 years old and one day I woke up with firefighters around my bed. I was so confused on what was going on. My parents told me I had a seizure and I did not believe or understand.
As time went on, I woke up in different places with people telling me that I had a seizure and still did not believe them. They showed me a video of my grand mal seizures and I was so confused on what I was watching in that video.
I went through many different neurologist doctors, so many different kinds of prescriptions. Sometimes it worked, but eventually my seizures came back. I call it the “epilepsy virus”. It seems like it ALWAYS finds its a way around or through my prescriptions. If I was seizure free for few months, eventually that epilepsy find its way back to attack me into a seizure.
As I grew up after high school I got my license and a great job. Everything was going just fine but then next thing you know? Epilepsy returned and had a seizure as I was driving, totaling my truck. I woke up confused on what even happened while my face was bloody. I didn’t want my job to know about my epilepsy because then they would never promote me to being charge making bigger money. However after about a month another seizure hit me, I dropped to the floor and ended up losing my job.
From there everything got taken away from me. My license was gone, truck was gone and my job I worked was over. I was so depressed and stressed. Because I had a happy life going making good money and being able to drive around anywhere I wanted and then suddenly all took away to where I was stuck home 24/7.
My friends were traveling, have a blast, while I was stuck home. Disability getting attached to you is not the same thing being born with it. I had to go to counseling to calm myself down due to suicidal thoughts. Eventually I got over my disability learning to still “Move On”.
Years passed. In 2018, doctors had the idea to plant the RNS system inside me. I was in the hospital for a month. I was scared. A year after the RNS plant surgery it wasn’t working. I was still waking up with a bloody mouths. It took about 2-3 years for the RNS to finally STOP all my grand mal seizures and NO more bloody mouth.
It did help but it’s not over yet. I’ve had a the RNS for five years now. I’m still not allow to drive due to the brain waves detecting I’m having seizures. I still have partial seizures. I sometimes stand still and freeze and sometime I can’t speak or have trouble talking. A neurologist shows me my brain waves, and some of them can be long episodes. Again, with the prescriptions I take, sometimes it works well for few months, but eventually that epilepsy always finds its way through that prescription to attack, back giving me seizures again.
I try to help others and explain how the RNS works when folks are disappointed at the RNS. I explain to them that you must be patient and must MOVE ON. You can’t give up. Metaphorically speaking, I tell people we are at war with our epilepsy problems and you could NEVER let the devil win this war. Moving on, I believe, is the key. We must stay strong and fight to find a way through or around our problems to succeed.
What are my Rights? Am I allowed to own anything? SSA is not enough, I want to live on my own but how am I supposed to live this life if a job will never let me get promoted to make the bigger money due to my epilepsy? How can I get a job when I can’t even drive. Paying uber would take my check every week.
What Would a Cure Mean to Adam?
A cure would reset my life. I’d be able to have a family. I’d be free to explore and no longer be stuck home 24/7.