When Battling Epilepsy, ‘You Have to Save Your Own Life’

The banging came in frantic blasts, each more desperate than the last. Soles slamming against wood until it splintered, the man’s shouts growing shriller by the second.

It was the sound of a distraught father kicking in the bathroom door. So loud was the commotion, it woke everyone in the house.

But 20-year-old Gordonnay Gaines couldn’t hear it. She lay unconscious in the shower, the water streaming on her seizing body.

“That was the turning point for me,” says the model from West Orange, N.J.

Gaines, 22, has come a long way since that morning two years ago, not by chance. After the seizure—convulsions as usual—she was done with the status quo. Tired of consuming a drug that made her feel depressed even as the seizures kept coming.

“I would rather have seizures than take medicine that doesn’t allow me to be myself,” she says.

Making the Decision to Stop Anticonvulsants

Model Gordonnay Gaines advocating for people epilepsy

“I have to make sure, mentally and physically, that I’m healthy,” Gaines says. “That’s my number one priority.” Photo by Kevin Sanon.

About a year ago, she decided. No more Keppra. Quit it cold turkey without saying a word. Conviction, purpose, responsibility, all swirled through her—a twister ravaging the plains of blind acceptance.

So intent was Gaines on getting off Keppra, she didn’t dwell on the risks of stopping it—and there are many. While increased seizures pose the biggest risk, stopping anticonvulsants suddenly after any length of time can lead to withdrawal. The physical and psychological symptoms can persist for months, and patients often must fend for themselves.

Despite these risks, Gaines proceeded as if swept up by some supernatural force. From Keppra to cannabis, that’s how it went. Since turning to CBD oil and weed last August, no more seizures, no negative effects.

Milestone of Her Own Making

“My one-year anniversary felt like an amazing achievement,” Gaines says. “I’ve made a milestone for myself doing something all on my own. I didn’t have my doctor’s support. I took it into my own hands. You have to save your own life.”

Model Gordonnay Gaines advocating for people epilepsy
Epilepsy has shown Gaines who cares and who doesn’t. Photo by kirabuccaphotography.

You have to save your own life. The words emerge like scripture, the incarnation of the young woman’s might. Hunger propels them. Hunger for change. It first churned at 17 after Gaines, a high school senior, had her first seizure in class. Just one year after walking New York Fashion Week for the first time.

An accomplished model signed in New YorkLos Angeles and Philadelphia, she has worked for many notable brands (Yeezy, Maybelline and Bobbi Brown among them). Her public persona uniquely positions her to be an influential voice for those with epilepsy, and Gaines embraces the role.

Obligation to the epilepsy community began with the seizure in the shower, where helplessness hung in the air with the mist.

“Epilepsy has definitely humbled me,” Gaines says.

Seize the Day: Finding Freedom in the Epilepsy Experience

As if releasing her shame, she sat down and penned “Invisible Illness,” a heartfelt confessional about living with epilepsy. Bravely, it starts:

it’s important people know
i am a person with epilepsy
that i support everyone with epilepsy

In transferring those thoughts from mind to keyboard, Gaines took the first step toward freedom. Then, on her 21st birthday, she launched Seize the Day, an Instagram blog that supports people with epilepsy. Just as the poem says. From the start, she strode boldly into the arena alongside her audience, making “Invisible Illness” the site’s first post.

“A year later I’m getting really positive feedback,” says Gaines, who left her stamp on the fashion world with this stylish promo:

STRENGTH, STYLE, SOPHISTICATION: Gordonnay Gaines in action for The Four Seasons Restaurant

“Seize the Day helps me realize that I’m not alone. I want others to know that they’re not alone. So many people with epilepsy have similar experiences. Seize the Day brings us together.”

Controlling Destiny with CBD Oil

When she wakes feeling nauseated, eyes twitching, Gaines knows a seizure is coming. That’s when she reaches for the CBD oil, a few drops under the tongue. If she takes it within five minutes of waking (and smokes some for good measure), she can avoid a seizure.

Being one year seizure-free guarantees nothing. Gaines knows that. So what? She’s going to ride this wave for as long as it lasts. Here’s hoping it lasts forever.

Show your support for Gordonnay Gaines and her epilepsy activism by following Seize the Day on Instagram. She’s shooting for 1,000 followers. Help her get there!

Do you like our epilepsy stories? Follow This Is Epilepsy and join our growing community. If you have an inspiring story of your own, we’d love to hear from you. Email us at info@thisisepilepsy.com.