Am I an epileptic, or a person with epilepsy?

Once, while online, I was speaking to a woman who also had epilepsy and I referred to myself as an epileptic. I stated “I’m an epileptic, I have been my whole life.”

“WHAT?!” she cried (if you can call it crying in a digital world)

“I’m an epileptic.”

“No! You’re a person with epilepsy. A. Person. With. Epilepsy.”

I’m not going to say how long this went back and forth. To be honest, it doesn’t make me look like that good of a person, and it’s all a bit ridiculous. However, it does bring up the question, are you an epileptic, or a person with epilepsy? If I’m honest, I think a “person with epilepsy” sounds like someone that has leprosy. Someone who is miserable and isolated. Someone who should be put a part from a normal person. An epileptic is just another adjective. It’s just one more thing that makes me a whole. Like if I had diabetes, I’d be called a diabetic. These are all in the same realm. I wish I didn’t have epilepsy, but I’m proud to be an Epileptic. Being an Epileptic means I’m an advocate, I’m a supporter, I’m strong, I’m educated (because lord knows it takes a lot to know even the slightest bit about epilepsy), I’m supported by those like me, and undersupported by those researching. Being an epileptic says so much more than being a person with epilepsy.

I am proud to be an epileptic. I’m an epileptic, a traveler, a volunteer, a student, a friend, a relative, lover, a fighter, a reader, a writer, a knitter, a biker. I am so many things. To call myself a person with epilepsy seems to make it so much more. It’s like the handbag I’m always carrying around. It’s my luggage. I’d rather lose my luggage at the airport and go to the beach.

What do you think?

As always, please donate to our cause. My best friend is running a marathon to make arguments about these sorts of things null & void. To properly treat Epilepsy would be a dream come true for me and many others. Help make that dream come true and skip your latte. Give to our fund.

Management

When you have a disease, a disorder, or really any malady, it’s all about management. Everything has to be managed. Your life goes from as care free as an adult human life can be, to the exact opposite.

As I was counting out pills this morning, trying to figure out exactly when I needed to fork out the money and call Canada again to set up my next order, I realized my life was managed down to the day. Pills had to be taken at certain times, I had to be in bed by 11 or my body clock would go crazy, everything was managed. I was like a fine tuned business without the joy of the income.

It’s nearing the time of year I love, and hate. This time of year is the time of long weekends, friends, parties, wine, champagne, and a multitude of other sins. Sleep schedules go wonky, diets go out the window… This is the time we forgive ourselves for not being managed. We forgive ourselves for letting our hair down and running wild and free. I used to love this time of year. Staying up until I saw the first dawn of the New Year used to be one of my favorite things. (Cover your eyes mom) drinking with my friends and just enjoying life, being a twenty-something.

To an extent, that’s no more. Obviously alcohol isn’t needed to make a party fun. You don’t need alcohol to be in good spirits, but it’s part of the season. Upset sleep schedules and letting emotions run whichever way you want and feel like… That’s something I can’t do anymore, not really. Alcohol is a definite no-no in my world. Between the benzos and the other medications I’m on, alcohol could be a death sentence. Upset sleep schedules increases my risk of seizures… Emotions running up and down increase all of those lovely stress hormones that can increase the likelihood of seizures… Basically the holidays can be a shark infested ocean for those of us that have to be managed.

Holidays are still my favorite time. I love family, I love friends, I love presents and food and pretty much everything the upcoming months stand for (including costumes!!) but they’re also some of the hardest times. Every time you go against the managed plan, it’s like going the wrong way down a one way street. You just pray you’re lucky and it isn’t this time.

I’ll never forget the first time I realized this. It wasn’t a holiday, but I was out with my friends in the town I grew up in. It was late, and we were out to see a punk band that has long since broken up and gone who knows where with their lives. I had been up late several nights running, I had a lot of caffeine in my system and the lights and the sound were bringing on simple partials like crazy. My friend Jim went outside with me and sat until they slowed down. It was cold, his jacket was wrapped around me. The sky was pitch black and people were milling around outside for who knows what reason. It was then I realized regardless of what I wanted to think and believe I’d never be like everyone else in the venue. No matter how hard I tried I’d be on the outside. ¬†When I finally stabilized to the point of what a 16/17 year old would feel as good to go, the show was over. Everyone came out of the venue and I wasn’t on the outside anymore.

People call me a control freak. Some say I don’t go out enough, I need to do more things and stay out later. Every time I think of that, I think of that one time I spent my night outside a venue trying my best not to freak out with Jim right there. I never want to feel like I’m on the outside, so I manage my life around it. I keep myself safe and secure so when I do go out, I’m able to be on the inside. To listen to the music, to open presents, to be a part of something other than this managed place I live in.

  • Meg
  • Reid B. Kimball

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