To the 21-Year-Old Who Had Big Plans Until You Heard the Word 'Epilepsy'

Hey 21-year-old me,

I know you’re freaking out right now. I wish I could tell you that seizure you just had was a fluke side effect of Wellbutrin, like your doctors are going to brush it off as. I wish you weren’t about to hear you have to quit a job you love because you can’t drive until they’re sure it was a fluke. It’s not a fluke. You have epilepsy. You’re going to have other seizures, and they’re going to be scary. 

But you know what else? It’s going to be OK. You have so many people who love you and want to help out in any way they can. Your fiancé is going to step up to the plate and learn to drive so he can drive you around, and after a year and a half of dealing with ER visits and EEGs, he’s still going to marry you because he loves you.

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I know you had plans. Big ones. You’re gonna have to adjust them to your physical and mental limitations, but that doesn’t make you a failure. It makes you a boss. I know you feel like you have to prove to the world that you deserve to exist — I still feel that way sometimes too. You don’t know what a “spoonie” is yet, but you will, and you are one, and that means sometimes your biggest accomplishment of the day is going to be surviving to the next one. 

I know this letter is hypothetical and will not actually reach you, past Beppy, and yet my geek brain still worries that telling you too much about the future will alter the course of events to where there’s nuclear war or something. But since you won’t actually see this, here’s something cool. You know those pills they just started giving you, the ones with the awful side effects? Ten years from now you won’t need them because you’ll have cybertech implanted in your brain. Seriously, you’re gonna love all the insane new tech we’ve developed since your sad little flip phone. 

Don’t despair, my child. Try not to feel like you’re “leeching” off your husband when you’re between jobs — there are going to be times when you have good seizure-free stretches and you’re the one supporting him. And he doesn’t resent you for it because you’re his wife and he loves you. Count your blessings. Ever since your diagnosis, you’ve never not had a roof over your head or access to (relatively) affordable healthcare. That’s big. 

You have such a drive to make a positive impact on the world, and it’s not going to go away. Just please cut yourself some slack every once in a while. So we’re not out flying around the world doing earthquake relief. We’re still volunteering. We’re helping out charities with all their behind the scenes stuff from our little computer, and we go sing at the nursing home every month, and they love us. 

A final note: Never let anyone make you feel “less than” because of your disability (which is what it is, a disability). This includes those chronic headaches inextricably linked to the epilepsy. They’re not your fault, you’re not faking or exaggerating and the rest of the world isn’t always going to understand that but f*ck ‘em. You own, Beppy Huls. You are a star-dazzle and they can’t take that away from you.

Love, 

30-year-old you