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How I Deal With the Toughest Parts of Life With Epilepsy

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When you’re going through a rough time, there’s often someone saying, “Keep your head up, kid. It’s going to be OK.”

Or “There’s a rainbow on the other side,” assuming that this is just temporary.

But when you wake up one day sick with no reason why and no amount of medication will cure it, it’s hard to see much of a rainbow. Yes, even with epilepsy you still have a life: hanging out with your best friends, singing, and dancing to Wicked. But when the party’s over, it seems you have had the longest day ever and need the most rest because you just can’t take it anymore.

When someone tells me, “It’s going to be OK,” I like to quote the Wizard of Oz. Not only because I relate to the scarecrow in the musical, but because they will know a little bit of my theater kid is still there.

“If I only had a brain,” I say.

They laugh and just continue the conversation, but hey, at least I get a break and can rest. But let’s be clear: I am not a bad, weak, lazy, or broken person. I am simply a person living with epilepsy, a very difficult chronic illness for which there is no cure.

The four hardest pills for me to swallow are:

1. Giving up your career or passion

2. Accepting there is no cure for your illness

3. Accepting you are chronically ill

4. Yearning to do things your body can no longer do

I’m tired of those pills, and I’m tired of the literal pills I have to take every day. I’m medically burned out. I am tired of explaining everything to my nurses, only for the doctor to come in and ask the same thing. I’m tired of anxiety before appointments that take everything out of me. Phone calls, holds, insurance, and chasing referrals. It’s hard to advocate. I try so hard, and then I do nothing. Do I keep trying when no one is listening or just give up? Damn it, the fatigue is setting in. I am just burned out.

Hamilton says, “Do not throw away your shot,” and Elphaba says she is “defying gravity.” I don’t want to throw away my shot, and I want to defy gravity! Chronic illness gets in the way a lot of the time of achieving that, but if you think about it, I made it through the day this far — so if I can make it through today, I can make it through tomorrow. I know I am stronger than what I am fighting.

No matter how much I want to give up and stop the pain sometimes, no matter how tired I am of the pills and medical bills, I love my life and everyone in it. I will not end it because that won’t stop the pain; it will just pass the pain on to my loved ones. I have a lot of pills to swallow, both literal and emotional, but for me, it’s worth it.

Originally published: April 9, 2024
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