We caught up with the brilliant and insightful Sue Seserman a few weeks ago and have shared our conversation below.
Sue , looking forward to hearing all of your stories today. Let’s kick things off with your mission – what is it and what’s the story behind why it’s your mission?
Epilectra’s mission is twofold:
Disability Empowerment, and
Stigma Elimination
Disability Empowerment
First off, in no way am I discounting how challenging it is to manage a disability. I check my blood sugar multiple times every hour and make minute adjustments to my insulin delivery. It’s never ending, and it stinks. But that’s the small picture. The big picture is where Empowerment takes place. If you believe you can accomplish something, you’re already halfway towards getting it done. Take Epilectra. This is going to sound strange, but in the “Thank You” section of the book, my first thank you is to epilepsy. If I didn’t get diagnosed with epilepsy, I never would have volunteered with hospitalized epilepsy patients and heard all their stories about what they’d given up. And it’s those stories that motivated me to create the character Epilectra, which led to the graphic novel. Lots of stuff in life is hard to accomplish, especially with a disability. But that doesn’t mean you don’t go for it. Maybe you take a different path to get there. Maybe you ask for help along the way. But you don’t forsake your dreams just because they’re difficult to achieve. Epilectra is filled with superheroes who have disabilities, and they transform their disabilities into superabilities to do incredible things.They are the epitome of Disability Empowerment.
Stigma Elimination
Stigma is a factor of fear of and ignorance. So, to eliminate the stigma that surrounds disability, you need to eliminate the illogical fear people seem to have of people with disabilities and the ignorance that accompanies it. The best way to do this is with education, conversation, and ideally, approachable disabled individuals who are willing to offer both. Epilectra offers the whole shebang – edutainment that includes easy to swallow messaging about disabilities given by “cool” superheroes with disabilities who are comfortable in their own skin. As far as conversation goes, I want to share a shortened quote from my former New York neuropsychiatrist who reviewed the book in its early stages. He said:
“Epilectra provides a wonderful bridge to help youth talk about what they face since she’s a superhero who faces disability with uncertainty, as well as determination and bravery.”
In other words, the graphic novel can be a tool to promote difficult dialogue with an otherwise hard to reach population – youth.
Epilectra conveys the message that being different should not invoke shame, but rather pride in the strength it takes to manage a disability and the unknowns it throws your way while also living your life. Her team’s motto is, Your Difference Is Your Strength. That affirms this belief. I hope Epilectra will provide a sense of empowerment and possibility to anyone managing a disability, insight for their loved ones, and a wonderful entertainment experience for anyone who enjoys superhero adventures filled with one-of-a-kind characters.
Awesome – so before we get into the rest of our questions, can you briefly introduce yourself to our readers.
I’m the Creator and Author of the graphic novel series Epilectra, about a diverse team of superheroes with different disabilities they transform into superabilities to rehabilitate their adversaries and make the world a better place.
I’ve always been a writer, and writing has always been an integral part of my career. After receiving my undergraduate degree in Communications and my graduate degree in Journalism from Northwestern University, I dove into public relations and paid my dues until I earned a spot at Edelman Worldwide in Chicago. I became part of their exclusive sports marketing/PR team – the only woman on a team with five men. I have to say that I loved it. Our clients included sports teams and beer breweries, and we had a lot of fun. After six years at Edelman, my husband’s job took us to California. He worked for The Quaker Oats Company and was transferred to be the Brand Manager of Rice-a-Roni. I was now married to “The San Francisco Treat!” Through a contact, I secured a position as Director of Public Relations with LucasArts Entertainment, the computer gaming company owned by filmmaker George “Star Wars” Lucas. Work was insane – media relations and tours, press releases, sell sheets, a quarterly company magazine, conference planning and execution, speech writing – but so was the camaraderie. And, the holiday parties were absolutely outrageous. I still have a picture of myself with Chewbacca on my fridge.
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Then life took another major turn: The adoption of our twin daughters from a Romanian orphanage and a move to Denver due to a new job for my husband at TCI International, a leading cable company based there. After things got somewhat organized between the twins and the move, I started a freelance writing business called The Mighty Pen. This later morphed into WordPrints, and I managed to retain a handful of clients. I freelanced and ghost wrote for a few years, but with delayed daughters to raise, neither my head nor heart was entirely invested in my work and I closed up shop.
My girls gradually caught up with their peers and went off to school, but more surprises awaited me. Over the next several years, I was diagnosed first with type 1 diabetes and then with epilepsy. Both invisible disabilities required learning to live life in an entirely new way. With t1diabetes, first there were shots, then pens, and eventually a pod to deliver insulin, all the while testing my blood to check my glucose level and make sure the correct amount of insulin was being delivered. Over time, glucose levels that are too high or too low make you susceptible to blindness, amputation, kidney failure, and all sorts of other scary stuff. But talk to anyone with T1diabetes and you’ll learn that, no matter how careful you are, highs and lows are pretty much inevitable (and they both make you feel crappy). With epilepsy there are seizures. My first three were tonic clonic, or the kind where you shake uncontrollably (and in my case, bite the inside of my mouth and pee myself). After seven years of trial and error with various anti-seizure meds in different combinations, I landed on a duo that seemed to work for me. My seizures “settled down” to become Absence Seizures where I would appear to zone out for a minute or so every four to six weeks. In the middle of all this, my husband changed careers and moved into the nonprofit sector. This began with running the local arm of a national organization for 15 years in Denver. He was then recruited to be the CEO of a national nonprofit in New York City. And we moved again.
Once my seizures were more predictable, I began volunteering with patients in Epilepsy Monitoring Units at hospitals, first in Denver and then in New York. Patients seemed to enjoy visits from someone who “got them,” and they consistently told me two things when I was with them: 1. They were surprised that I would visit them alone with epilepsy and called me “brave” and “heroic” for doing so. I told them that epilepsy wouldn’t stop me from doing something important, and that I took precautions like wearing a medic alert bracelet and taking public transportation. 2. They also told me that they had given up on something important to them – their education, their career, a relationship, their independence – because of their epilepsy. This made me really sad.
Then the Pandemic hit, and I had to leave my volunteer job along with all non-essential personnel. But I couldn’t stop thinking about my patients and how they had forsaken so much because of their disabilities. With lots of time on my hands now, I began to consider how I might change their frame of reference; how I could take them from a place of “I can’t” to one of “I can.” That’s when the idea of Epilectra came to me – not as a graphic novel initially, but as a character. I could create a “real (albeit fictional) hero” with a disability – epilepsy, a disability I already knew a lot about – and have her transform her disability into a superpower. She would manage her condition, and at the same time be unafraid to be out in the world performing good deeds. Then I changed “superpower” to “superability” to emphasize that a disability doesn’t have to hold one back from pursuing one’s dreams. When I told my now 23-year-old daughter about Epilectra, she exclaimed, “Mom, you should write a comic book about her!” I considered this, but the Epilectra concept was growing exponentially in my imagination. So, I decided on a graphic novel series instead.
Today I couldn’t be more thrilled that my initial idea four plus years ago is a reality with the publishing of Epilectra Book 1, and that I’ve surrounded my character Epilectra with a cast of family, friends, students, and a team of other superheroes with different disabilities they also transform into superabilities. One of the things I’m most proud about Epilectra is that it isn’t a ‘How To’ book on disability. It’s more intuitive than that, so it can have both very specific and very broad appeal. There’s no question that anyone reading Epilectra will learn about the disabilities depicted in it, but that happens as the characters with these disabilities learn about themselves. Readers with disabilities and their loved ones will gather information and have their feelings legitimized and addressed as part of the narrative and the characters’ actions and dialogue. I hope that as the characters grow and get more comfortable with who they are, readers will do the same. But first and foremost, Epilectra is a beautifully illustrated, captivating adventure series with interesting, modern heroes and unusual, sympathetic adversaries all set in the exciting city of New York. What more could any graphic novel lover ask for?!
Let’s talk about resilience next – do you have a story you can share with us?
This is the first time I’ve shared this in print, but it probably demonstrates my resilience more than any other event in my life. I actually had to recover from botched brain surgery in early 2019.
There’s a procedure called RNS for epilepsy, and I was told at the time that I was the ideal candidate for the surgery. It involves removing a portion of your skull and implanting a small, slim device (about the size of half a credit card) that reads your brain waves in its place. The device has four long, thin wires that come out from it which are threaded through your brain to the locations where your seizures start. Over time, the RNS learns what your brain waves look like just prior to a seizure and so it can send a little electric shock through the appropriate wire into your brain to “zap” the seizure before it happens. It’s kind of like a pacemaker for your brain.
I went through this 9-hour procedure in early February of 2019, spent two nights in the hospital, and went home. Everything seemed to be going as it should until I woke up on February 24th with yellow streaks on my pillowcase. My husband examined my incision, murmured an expletive, and called the surgeon’s office. He was told to get me to the hospital as quickly as possible and not to take the subway (We were in New York City at the time).
We arrived at the hospital’s ER and were escorted to a curtained area. Within minutes, a doctor came in to examine my head. After a quick look at my surgical site, he took my husband outside the curtained area where I was lying. They reentered with serious faces, and the doctor told me that I would be admitted immediately and scheduled for surgery as soon as possible. My RNS device had become severely infected and had to be removed at once.
I had a six-hour surgery the following morning and was released from the hospital the next day. This time, however, I was in pretty bad shape. We hired a home health aide to help me walk, dress, bathe, eat, toilet, and write. It was three months before I was back to some semblance of “normal.”
Why did this happen to me? We’ve gone over and over this question, and there are several possibilities. Diabetes can interfere with the healing process and the medical team should have treated me with antibiotics before, as well as after, the surgery because of it. I needed my own, special “protocol,” but we didn’t think to ask for it. Or could the device have been contaminated before it was even put into my head? Unlikely, but possible I guess. Maybe I was just the 1 in a million case that you hear about; you know – bad luck.
Six months post surgery we revisited my neurologist and were told we now had three options regarding what to do about what was essentially the hole in my head: 1.) Undergo the RNS surgery again with a better pre-op protocol in place, 2.) Insert a hard plastic piece into the hole in my skull in order to protect my brain, or 3.) Do nothing. I opted to do nothing because there was no way I was undergoing another brain surgery. In addition to your skull, your brain has a tough, leathery material surrounding it to keep it safe, so unless I’m hit by a speeding, sharp projectile in the exact spot my skull is missing, chances are my brain is safe. So far, so good.
That’s my resilience story!
How about pivoting – can you share the story of a time you’ve had to pivot?
I started my career in public relations – and I was thriving. But I left that to raise my children, who had significant developmental delays. Many years and two diagnoses later, I pivoted again to write Epilectra so I could help others with disabilities understand that they are capable of anything that they set their minds to.
Contact Info:
- Website: https://www.epilectra.com
- Instagram: https://www.instagram.com/epilectra/?hl=en
- Facebook: https://www.facebook.com/people/Sue-Seserman/pfbid02yfTcqpvicSQyiV7Nf5PBHLXs1CNYa9VKXmub57doohqSCkHov8M5Xiyvu1f9T1edl/
- Linkedin: https://www.linkedin.com/in/sueseserman/
- Twitter: https://twitter.com/epilectra
Image Credits
Epilectra