I know I’ve talked about excuses before, but I want to expand on it.
Seizures are scary. The thought of having a seizure is terrifying. The fear of experiencing a seizure can be debilitating. The actual episode itself is comparatively minor compared to the incapacitating terror that preludes is (or doesn’t prelude it, just the simple existence of knowing that an episode could happen is enough). That fear is always there. When I have commitments, when I have plans, when I say that I will be somewhere, I recognize that nagging worry in the back of my mind that reminds me that I have a condition that could stop me from being there.
I’ve got options. I can make plans and commitments and intend to be somewhere and hope for the best. I can buy the bridesmaid dress or register for a race or book a plane ticket knowing that there is a chance that I won’t be able to do it. Alternatively, I can decline the honour of standing with my friend at her wedding day. I can choose not to register for a race just in case something happens. I can decide to stay exactly where I am and never have another adventure. No one is forcing me to run or to socialize or travel.
Best case scenario: No seizure.
Worst case scenario: Staying exactly where I am. That’s right. The worst case is not “having a seizure”. I’ve had seizures before. That’s old news. While I realize I’m being a bit flippant about it right now that really is an accurate statement. I’ve had seizures before in lots of different places and circumstances. This is the reality of being a person with epilepsy, of being an epileptic. I have seizures. I am epileptic (or a “person with epilepsy”).
The worst case scenario is not doing anything because I am too afraid. That’s not to say that I am unconcerned, or that I don’t take care. I do worry. I make arrangements and I ensure the people I am with know I have a condition and what to do or who to call. These are easy, minor things that are simple to organize and mean the difference between potentially worrying and being able to enjoy myself. This means the difference between experiencing things versus staying at home, because “epilepsy”.
Epilepsy is not an excuse.
Epilepsy could be a snag, a glitch, a tremor, an inconvenience. Epilepsy could be that uneven piece of sidewalk that I smush my toes on and trip over. Epilepsy could be the single candle on the birthday cake that won’t light. Epilepsy could be a coffee shop only accepting cash when I only have a debit card.
Epilepsy could be the end of the world. Epilepsy could be the four horsemen of the apocalypse bearing down on me. Epilepsy could be a giant meteor rocketing through space headed straight for me. Epilepsy could be the Grim Reaper holding his scythe and staring, lidless, at me, from deep within the hooded cloak.
Epilepsy becomes whatever I make it. It can be just a normal, minor reality or it can be this big disastrous tragedy. It doesn’t matter if I’ve been seizure-free for two years or two weeks. If I choose to make epilepsy my excuse to avoid living and experiencing, that’s my choice. Not “epilepsy”. Epilepsy is not an excuse.
Side effects fall in the same category. Reading the list of side-effects on any prescription medication can be daunting. Depression, anxiety, weight gain, hair loss, hunchback, liver damage, vertigo, birth defects (mind you, reading the list of side effects for aspartame and alcohol is pretty scary too). But I’m not going to stay inside because of the side effects either.
I do have vertigo. Sometimes I get off balance. Sometimes that happens while running. My knees and shins have a whole web of scars tracing them from the number of times I’ve tripped (never mind even having a seizure while running). One time I was pulled out of a race because I slipped on gravel and my legs were bleeding profusely. Not related to epilepsy. Not related to side effects. Just bad luck (and bad form).
If I don’t feel like going out and socializing, I say that I don’t feel like going out. If I’m in a bad mood, I blame a paucity of coffee or wine (or both). If I have low energy and don’t feel like doing anything besides lying on the couch and watching the X-Files, in that case, I put on sneakers and go for a walk. I know that walk will turn into a run very quickly and then I can enjoy the X-Files later. I will never regret the decision to go for a run.
Epilepsy is not an excuse to stay inside and avoid the world. I can appreciate the world more, and all of the experiences that I push to have, knowing that I am not shying away from the big bright gorgeous world because of something that I can’t change anyways.