Is there a difference between growing up with epilepsy or being diagnosed as an adult? I wasn’t diagnosed until later in life. I am not saying one is better than the other, it is epilepsy, we all have to deal with it. It’s a struggle no matter your age. I guess I’m wondering if the way we respond is different at other points in a person’s life.
I will start with my experience, simply because it is what I am familiar with. I had my first seizure at 44 years of age. I actually had two seizures before the neurologist found an AVM(Arteriovenous Malformation) in my brain, but still denied I was having seizures. The neurosurgeon I was sent to in another hospital said I was definitely having seizures and immediately put me on an anti-seizure medication and told me to stop driving. My AVM was removed by craniotomy and the assumption was my seizures would stop and I would be weaned from the anti-seizure meds. Over two years later the seizures continued, the anti-seizure medication was upped, a second medication was added and also upped along the way. I don’t know what the first two seizures were because I was alone, but I have only had one tonic-clonic seizure. The rest have been focal seizures. I think what bothered me over this time was epilepsy was never mentioned to me. I finally had to ask the questions myself. I was contemplating looking for a new job, so I decided to send a message to my neurologist. My question was something along the lines of “I want to look for a new job, what should I tell people about these seizures that I am still having? Is it just something related to the brain surgery? I just want to make sure I’m using the right terminology when I talk to people.” The response I got from the neurologist office was kind of upsetting. It was very positive about looking for work, but this was kind of their response “Yes, you should absolutely apply for new jobs, good luck with that. You have two diagnosis. The first is your AVM and the second is epilepsy secondary to the AVM.” Wow, why had that never been shared with me? It made me wonder if it is the fact that I am a middle aged woman so it is just assumed that I should already know what is happening to me. In that instant I could just feel all of my hopes kind of die. I thought I would be driving again, I thought I could move, I thought I could find a new job with ease, I thought I could plan a vacation on my own. I felt so many things just disappear. So many times I have wondered if my life would be different if I knew I would end up with epilepsy when I was younger. Would I have moved into a small, rural area with no public transportation? Would I have taken vacations knowing how to be more prepared for myself? Would I have looked for a job that I truly loved instead of taking a job that I needed just to pay the bills? I have been wasting my days now just trying to get through things. After each seizure I have to go six months seizure free until I can drive again. I went 353 day without driving and was so excited to drive to work myself only to have a seizure a few weeks after that. I am again, relying on rides for at least another three months. My job is 20 miles from my home. Had I been prepared for this, I would have lived in a city. My family is supportive, but I don’t think they really understand what I am dealing with. I get a lot of, you’ll be fine, just be positive, call me if you need anything, I’ll take you anywhere you need just ask, have you had anymore “spells” lately. I do a lot of sitting at home, alone, because it’s the simple fact that I always have to ask. I hate being a burden and the more times I ask and people already have plans, I do start to realize I am a burden. If only epilepsy had come along when I was young.
My thoughts of being a young person with epilepsy are so much different than that for an older person. Your parents, siblings, family members and friends already know you have epilepsy. They know you could have seizures anytime and they know how to react for you. You are supported and pushed to be the best person you can be. You know what could happen to your body at anytime. I feel like you can plan your life. You can live in a place with public transportation so you can get to places without constantly asking friends and family for rides. You can have a better idea of what kind of job will work best for you. I just feel like you can have a more positive outlook on life. Your doctors would have already share information with you or your parents when you are first diagnosed and understand what your life could be. You would actually be diagnosed, there would be no asking. I follow the support groups online and there are so many parents that support their kids and have the ability to help plan lives for their children. That makes me so happy for these kids. These are all just thoughts for me because I can’t know what their lives are like, but it feels like there is possibility for them. Although I can’t lump everyone into the same slots, I know that’s wrong. There are those that don’t make it through childhood because of epilepsy. Being somewhat new to this I am trying to learn as much as I can.
As an adult, I’ve been very negative on being a newly diagnosed epileptic. I just keep waiting for the seizures to stop. They go months apart, but still happen enough to affect my daily life. I probably have it a lot easier than so many. My first thoughts have gone to what my life could be like if I had known I would have epilepsy before I left my childhood home and embarked on adulthood. I know my life would be different. I’ve spent more time thinking it would be easier if I had known. I’m currently trying to figure out how to move forward, but I also want to spend time learning about those that have lived with it through their entire lives. What has their struggle been? Have they had to give up dreams they wished for? Are they as negative as I am? Life with epilepsy can be difficult for everyone involved, I hope to get some insight on all people affected and am not so ignorant on my thoughts.