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Real Talk on Epilepsy: A Love Letter from My Brain

I got this letter from my brain yesterday. The penmanship was atrocious. She must have been drinking. I think she may be under the impression that she is a young Elizabeth Taylor. You can almost picture her staggeringly violet eyes staring you down as she speaks:

Dear Alisa,

My dearest love. Yes, I know it looks like a real mess in here right now and I know my writing you this love letter may seem a bit unorthodox in light of the situation but, darling, I couldn’t resist. The temptation in me, across my every axon and dendrite, was too powerful. I know you feel betrayed by me, by my electrical taunts, by what seems like faulty wiring between my lobes, but my love for you is boundless.

It’s complicated, but I have evolved and adapted for more than one hundred thousand years across one hundred billion cells to keep you safe, to keep you interesting, and to keep evolving. In truth, I am a secret radical—like Jane Austen or Emily Dickinson. With more than 50 million people worldwide living with epilepsy, one in ten people will develop seizures in his or her lifetime.

These people not only need practical, prescriptive advice for surviving a life with seizures, they need to know how to make meaning of seizures, of epilepsy, and of life with it.

I am more of a process than I will ever be a specific organ with a function, and because of that, I am always becoming something new, something else. Writing about seizures is like writing about the soul. It’s forever elusive. Every time you think you’ve captured it, it shifts form or disappears altogether.

While we may indeed have to respect some of the cards we’ve been dealt, we can still re-craft the story—to laugh a little. Or a lot. You are never beholden to a sh*t narrative, my dearest love. Try to take that very same richness and intensity of feeling that comes with this electric condition and apply it to every moment in between and ahead.

If you feel you have been on the outside of your life for so long, like an uninvited guest hovering at the periphery, and that you can never claim it back, I am writing to tell you that you are wrong. I, your brain, was wired to write multiple futures. When I send you messages that say, “Stop, go back!”; or, “Don’t do this! This is dangerous and it will involve pain”; or, “You will get hurt,” I need you to listen and hear me and know that I have evolved over all this time to protect you and to perpetuate your species. Every problem I present you with is an adaptive piece to propel the story. Your story. The one you are writing at this very second. Let this new narrative heal you. Let it heal others. Make them curious and defy their expectations however you choose to. Who decides who gets to be the good epileptic anyway?

Now, as your brain, I feel I have a duty to inform you that I have this fantasy that all the nerds and weirdos of the world will read these words here and, bit by bit, even in the reddest, most singular, and closed-minded of rural backwater places and towns, they will grow into radical neurodiverse sleeper cells. Think of them as subversive little tribes of epileptics, autistics, anxious depressives, and other neurotypes all disrupting the stigma. I say this because I want you (and all the disabled) to experience that odd, rare spark of joy; to be curious about what it means to be electric; and to understand how you can take something that should be really, truly awful and rewrite it to reflect joy.

Words can spark such fires, and we are only just learning how to torch the ground rather than ourselves.


Your brain

*Edited and excerpted from Gotham Girl Girl Interrupted – Misadventures in Epilepsy – available everywhere.

Follow Alisa Jones:
Alisa Kennedy Jones is an American memoirist, blogger, novelist, and awkward public speaker. The co-creator of one positively riveting crime series (GIFTED), her award-winning bon mots have been featured widely in national media outlets, magazines, and on NPR. Her debut collection of comedic essays GOTHAM GIRL INTERRUPTED (Imagine!/Penguin Random House) is climbing the charts since it's release on Nov 6, 2018. Jones splits her time between New York City and the Berkshires.

  1. Lauren Alexandra Brunell
    | Reply

    “Try to take that very same richness and intensity of feeling that comes with this electric condition and apply it to every moment in between and ahead.”
    I do my best! This letter is genius. Thank you Alisa’s Brain.

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