“HOW DO I RECALIBRATE MY WORTH IF I’M NOT WORKING, OR BEING PRODUCTIVE?”
–KRISTY R.
ART IS TRANSFORMATIVE. It turns heartbreak into song, struggle into prose, and limitations into limitless creativity.
For people living with epilepsy, the value of the arts cannot be underestimated, says Chris M., a pastor, writer, and epilepsy advocate who lives with the condition. For Chris, who composes both poetry and prose, writing is therapy. But it’s also about keeping his mind nimble. “The arts are so important,” he says. “The exercise of neuroplasticity, continuing to build neuroplasticity every day—learning to play an instrument, reading a poem—the arts do that.”
Writing, music, craftsmanship: Whatever form it takes, the people profiled in these pages have found art to be a form of advocacy and self-expression, and a means to turn towards hope.
When Kristy R. of Portland, Oregon, had her first seizure at age 26, she had a successful career as a nightclub DJ. She was also a classically trained multi-instrumentalist. But that initial seizure, a tonic-clonic, went on for well over an hour, causing extensive damage in Kristy’s brain.
The effect was devastating. She lost the ability to play music and her DJ career ended.
A few years later, her wife, Lara, encouraged Kristy to stop working and devote herself to self-care and rediscovering her creativity.
Today, Kristy is a woodworker who designs mid-century modern style furniture, does silvercasting (which involves pouring molten silver into designs she often creates from cuttlefish bones), and creates screen prints. “I love learning to do new things,” she says.
Kristy still suffers seizures that have never been fully controlled by medication and is on disability. “It was a real struggle,” she recounts. “How do I recalibrate my worth if I’m not working, or being productive?”
Through her creations, however, Kristy has settled into the freedom of creating. “Being able to find something—whether it’s art or anything that can help you feel worthy again—is good,” she explains. “Every time you lose something, you can find something else, something new.”
When Breanna F. was a junior in high school in Indianapolis, she suffered a breakthrough tonic-clonic seizure, after years of being seizure-free. “I was really down about epilepsy,” says Breanna, who was diagnosed at age 8 after experiencing absence seizures. She lost her driver’s license and the seizures became regular.
“IT HELPED ME OVERCOME HOW I WAS FEELING.”
–BREANNA F.
But Breanna, who has been singing all her life, turned to music. She wrote a song about living with epilepsy that she titled “Fireproof.” “It flipped a switch once I wrote about it,” she says. “It helped me overcome how I was feeling.”
She performed “Fireproof” at a national conference for teenagers living with epilepsy. The experience sparked the advocacy work she continues today through social media outreach and by performing her songs.
Today, Breanna, 22 and living in Indianapolis, is as devoted to her art as ever. She spends her weekends performing at local bars, festivals, and fairs. Her weekdays, meanwhile, are focused on her work as an EEG technologist at Riley Hospital for Children, where she herself was treated as a child. (Strobe lights don’t affect her, so she can conduct photo-simulation tests.)
Connecting with families of young patients and being able to model a life well-lived is its own reward, she says. “It is possible to live a normal life with epilepsy. Just because you have something holding you back now, doesn’t mean it will forever.”
Like many people whose lives were altered in a single moment, Chris M. can easily recall the date when everything changed: March 6, 1996. He was 36 years old, married, and the father of three young boys, when a case of viral encephalitis, an inflammation of the brain, nearly killed him. Chris spent 10 days in intensive care while his wife, Debbie, wondered if he would ever come home. He did but faced a new battle: Chris would have to relearn to speak, read, and write.
Chris had always been a writer; it was his vocation. But the extensive scar tissue in his brain led to an epilepsy diagnosis. His writing would never be the same. “I was a deep thinker and I memorized everything easily,” Chris says. Now he uses his phone as a memory aid and says all of his writing is poetry. “Even if we turn it into prose, it begins with poetic flow.”
Nonetheless, he is writing. This year, Chris, who is the Campus Pastor and Director of Spiritual Life at Emmanuel University in Franklin Springs, Georgia, will publish his 12th book. “One of my neurologists was holding one of my books and telling me, ‘With your brain damage, you shouldn’t be able to do this,’” says Chris, who credits his faith in God and his stubbornness in sticking with the arduous therapies to help his brain recover after his illness.
“IT JUST HELPS ME FACE REALITY, BUT ALSO REALIZE THIS IS A NEW ROUTE THAT I DID NOT PLAN TO TRAVEL ON.”
–CHRIS M.
Today, he finds solace in the arts. “Writing is my therapy,” Chris says. “It just helps me face reality, but also realize this is a new route that I did not plan to travel on. I can complain about it and wish I was still on the old route, or I can choose to let this boulevard be the right place for me.”
Like many creative writing majors, Abey W. explores personal themes in his work. For Abey, who attends Columbia University in New York City, those themes center on what life is like with a severe disability.
Abey, 20, was born with FoxG1 syndrome and cerebral palsy, and lives with epilepsy. He doesn’t walk and prefers the term non-vocal to indicate that he doesn’t use spoken language. Abey is able to communicate, thanks to an ingenious device developed by his parents. By shifting his bodyweight forward and back, Abey presses his chest against a custom switch array, which allows him to choose letters. It’s slow and thoughtful work.
“I USE MY LIFE TO ILLUSTRATE THE JOYS AND CHALLENGES OF LIVING WITH A SEVERE DISABILITY.”
–ABEY W.
As a writer, Abey illuminates his life through first-person essays. “My essays are designed to provide visibility for the disabled experience,” Abey says, via email. “I use my life to illustrate the joys and challenges of living with a severe disability.” He also creates and features disabled characters in his fiction stories, plays, and a screenplay.
At Columbia, Abey has accommodations such as extra time for tests and an accessible dorm room. Now in the third year of a five-year program in creative writing with a concentration in non-fiction, Abey says that he has everything he needs to be successful at Columbia—and pushes back against the idea that writing helps him cope. “I am not coping,” Abey writes. “I am thriving in a community that values me and my work.”