She’s Powerful, Strong, and Fast AND Thoughtful, Kind, and Vulnerable … and She Has Epilepsy. How and Why Did She Come into Being?
The patient seemed stunned. “How can you be here alone?” he asked me. “Aren’t you afraid?”
I was volunteering in the neurology unit of a large Denver hospital when this occurred, and I had just shared with the epilepsy patient that I also had epilepsy.
I responded, “No, I wasn’t afraid. I was smart.”
I used public transit to and from the hospital and wore a medical identification bracelet “just in case.” I also let him know that I found volunteering at the hospital extremely fulfilling – visiting with epilepsy patients to tell my story, talking, playing games, and distributing a document that I developed for the hospital full of resources about transportation, online education, delivery services, support groups, and more that might help someone with epilepsy have better access to and be more comfortable in the world around them.
While volunteering and managing several “invisible disabilities,” the two most serious of which are epilepsy and Type 1 diabetes, I met many patients afraid to live their lives to the fullest because of their disability. Yes, having these conditions suck, and I often need to think of alternative ways to do normal things. But that doesn’t stop me from doing them. For instance, I quit driving years ago because of seizures. So, now that I live in New York, I take buses, taxis, the subway, and do a lot of walking – which is great exercise. Being diabetic, I rely on insulin. But I also love sweets. So, I make sure to know my indulgences’ carbohydrate values, and I try not to eat them too late in the evening in order to avoid nighttime “spiking.” I also keep in mind that an after-meal walk helps my insulin work more efficiently. Plus, it’s good for me!
I’ve been called “brave,” a “role model,” and even “heroic” by people – some with similar conditions and some not. But honestly, I don’t feel comfortable with these titles. I’m just a regular person doing her best with the hand she’s been dealt. These kinds of interactions, however, suggested to me that there’s a need for someone accessible who can legitimately step into a “brave, heroic, role model” role for people with disabilities, and at the same time demonstrate to the world that people managing disabilities are regular people, too. So, I wrote about her.
Meet EPILECTRA, a modern superhero living in New York who turns her disability – epilepsy – into a super-ability. She’s the star of my upcoming graphic novel, and she leads a team of other super-abled, disabled superheroes called SEEZ – for Support & Empower Everyone Zealously. In addition to epilepsy, SEEZ’s superheroes contend with diabetes, autism, cerebral palsy, and endometriosis, and each member morphs aspects of his or her disability into a superpower. But SEEZ isn’t just a fictional superhero group – it’s also a nonprofit organization I have started with the goal of providing the resources and support needed by people managing disabilities to live their lives to the fullest. You can check out SEEZ at www.seez.us
Epilectra’s human self, Eden Rivers, develops epilepsy after being struck by lightning during a storm at a family Thanksgiving dinner. Over time, she learns to direct the errant electrical activity in her brain through her fingertips in the form of lightning. Harnessing this ability turns Eden into Epilectra.
The graphic novel Epilectra and its accompanying website are about “I can” in a world filled with “I can’t” and “I shouldn’t” messages. She’s powerful, but also kind, empathetic, and vulnerable. Her human self, Eden, is a 5th-grade social studies teacher at a public school in New York City. Volume One of the Epilectra series includes BOOK 1: SEEZation, BOOK 2: Up On The Roof, and BOOK 3: River Rager. Throughout the series, we’re in touch with all the characters’ human fallibilities. Eden struggles with her diagnosis before becoming Epilectra, Eden and her engineering savant brother Logan squabble throughout, and even Epilectra worries over the responsibility that comes with being a superhero. Villains BlaqOut, River Rager, Crusty, and Virulant generate sympathy as well as anger. We want them to be rehabilitated, not simply be destroyed.
As the series progresses, Epilectra and SEEZ are joined by more super-abled heroes. Insulator, who has diabetes, becomes a member at the end of BOOK 3, and Aupticus, who has autism, joins SEEZ in BOOK 5. C.P., who struggles with cerebral palsy, and EndoGirl. who contends with endometriosis, will join the team in future episodes.
Disability is so much more common than people realize. Like Epilectra, 1 in 26 Americans are diagnosed with epilepsy in their lifetime, and like Insulator, 1 in 10 will develop diabetes (1 in 100 with Type 1 diabetes). Like Aupticus, 1 in 54 children are placed on the autism spectrum, 1 in 323 are diagnosed with cerebral palsy like C.P., and like EndoGirl, 1 in 10 women are diagnosed with endometriosis during their reproductive years. According to the Center for Disease Control, 1 in 4 people manage at least one recognized disability. That figure stunned me when I learned it. My goal is that Epilectra will serve as a beacon of positivity for anyone with a disability and their loved ones; that she’ll encourage them to open doors rather than let them stay shut. She’s a mighty, yet genuine, addition to the cadre of superheroes represented in graphic novels and in social media.
Epilectra wants you to know that you can be your own superhero. Her tips on how to do that are available for you to download free on the Welcome Page of her website at www.epilectra.com. Please come check it out now! Her site will also tell you more about the graphic novel, the characters, and SEEZ, have a page of fun stuff, and give you the chance to send her your own mini-adventure to possibly publish.
Sue Seserman is the Creator, Writer, and Illustrator of Epilectra and is also a creative writer, memoirist, and publicist who, prior to starting a freelance writing career in 1990, worked in sports marketing for Edelman Public Relations in Chicago and as the Director of Public Relations for George Lucas’ LucasArts Entertainment in San Francisco. Today she resides in New York City with her husband Doug, one of their daughters, her daughter’s boyfriend and their wonderdog, Scooter.