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Epilepsy Blog Relay: A screenwriter shares her experience with epilepsy

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Alisa’s Story

Alisa Kennedy Jones is a screenwriter and a brand strategist for many clients you may have heard of including Tommy Hilfiger, General Electric, Colgate-Palmolive, Coca-Cola, Sephora, Disney, Citibank, Golden Books, Electronic Arts, and Marvel. She is also an American memoirist, blogger, novelist, and in her words “an awkward public speaker”.

In 2010, at the age of forty, Alisa was diagnosed with a severe form of epilepsy. Alisa notes, “my seizures are the kind most often portrayed in the media, meaning the afflicted person falls to the ground and thrashes around until some brave-hearted Samaritan comes to the rescue.”

What is epilepsy?

In Alisa’s words, “Simply put, it’s an overabundance of electricity in the brain. Less simply put, it’s a serious chronic neurological disorder characterized by sudden, recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated
with atypical electrical activity levels in the brain.” According to the Mayo Clinic, “Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness.”

Gotham Girl Interrupted

Alisa has just released a collection of comedic essays GOTHAM GIRL INTERRUPTED (Imagine!/Penguin Random House). Below you will find a brief excerpt:

I can’t really blink my answer to the EMT about having taken anything (mostly because I take everything), so I croak a whisper up to him as best I can, “I-nuh-staz . . .”

“A what?” he says, leaning down now as though I am whispering a code word for entry into a secret society.

I try again, “uh sppzzazzz . . .”

He cocks his head, looking quizzical. “A spaz?”

I close my eyes. I open my eyes.

He suppresses a smile and says, “You’ve had a seizure.” To his partner, a guy I can’t quite see, he rattles off, “Status epilepticus . . . blah-blah-dee-blah-blah . . .” Everything sounds like molasses now. “. . . Dislocated jaw, compound facial, cranial, dental fractures and lacerations . . .”

Processing his words, all I can do is blink in a Morse code of my own making: Good God, why couldn’t I have fallen on my big bag instead of my face? What’s the point of having a big bag if it doesn’t at least function as a pillow or a helmet?

Then he is back talking to me, trying to channel his most upbeat but sorry self: “There are things they can do . . . implants, prosthetics . . .”

Prosthetics? Dear me, prosthetic what? His words trail off again, and I can see him realizing that just before this moment, maybe only twenty minutes ago, I was probably a very differ- ent girl than I am now. And I just want to tell him, “Don’t be sad, hot-hair-ambulance guy. This isn’t my rst brush with the electric.” 

Brand new podcast

I have teamed up with Alisa on a brand new project. We are starting a podcast about living with epilepsy. We’ll be talking about all the funny, weird, and sometimes uncomfortable things that happen to the millions of us living with epilepsy. Stay tuned for our first episode wherever you get your podcasts!

NEXT UP: Be sure to check out the next post by Jess at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

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Jessica K. Smith
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Founder

Founder and CEO Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.

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