Why Me? Why Now? Thoughts on Having a Disability

When I was diagnosed with Type 1 Diabetes at 30 and then Epilepsy at 50, I spent a lot of time lamenting, “Why me?” The better question is probably, Why not me? 1 in 4 Americans are diagnosed with a disability in their lifetime, and many of those disabilities are “co-morbid.” In other words, if you’ve got one, you’re more than likely to develop another. But I spent literally years feeling sorry for myself, helpless, and like a loser. In retrospect, what I should have felt – what I feel now – is powerful.

That’s not to say that I don’t struggle daily with the management of these two tricky conditions. My husband jokes that I’m the “bionic woman” because I’m hooked up 24/7 to my Omnipod5 (for insulin delivery) and my Dexcom CGM (Continuous Glucose Monitor). I also take 10 pills of two drugs in different combinations three times daily to keep seizures at bay. That’s in addition to my levothyroxine (Did I mention I also have hypothyroid?), a multivitamin, a joint support pill, a bone health pill, two antidepressants, one antidepressant to help the other two work better, and a sleep aid. I think it all adds up to 18 pills daily. Sheesh! But who’s counting!? My savior’s been those plastic day-of-the-week, AM/PM pill containers to keep everything organized along with my amazing husband to refills the plastic container.

But everyone’s got something, right? When I started writing Epilectra, I decided: No more shame. No more hiding my disabilities. I would be proud of who I am and what I’ve got going on. So, now I seek to educate and to help others feel more comfortable in their own skin – regardless of what that skin’s got going on.

I’d like to share a short story with you. It’s a story about one of the first times I knew I was on the right track with Epilectra and the message of disability empowerment. My husband and I were at a 60th birthday gathering for a friend of ours. We were talking with another couple we’d just met at the party. When asked about what I did, I gave my brief spiel about Epilectra and how 1 in 26 people are diagnosed with epilepsy in their lifetime and 1 in 10 will have a seizure. The wife left us to chat with another group, and the husband turned to me and said, “I’m one of them. One of the 1 in 26. I’ve never told anyone before besides my wife, and she’s going to die when she finds out I told you.” We wrapped up our conversation and moved onto other people at the event. All I could think was, “Wow. This adult man just chose me to confide in. I hope I’m only the beginning for him.” That’s powerful.

Another reason why I think it’s particularly important I bring Epilectra and Team SEEZ (Epilectra’s team of superheroes with various disabilities they transform into superabilities) to the forefront is the type of disability we share. All of us, aside from Epilectra’s brother, Logan, who suffers from Paralysis (1 in 50 live with some form), have invisible disabilities. Invisible disabilities are exactly what they sound like – you don’t see them when you look at people who have them. However, that doesn’t mean their effects aren’t acutely felt. Personally, I’m very fortunate that my Epilepsy is controlled thanks to medication. But I work to control my Type 1 Diabetes every minute of every day. And even with the tightest control, blood sugar highs and lows are inevitable. My bedside table is always stocked with gummy bears and my refrigerator with orange juice to counter lows when necessary. Plus, my phone-sized insulin pump meter is practically glued to my side to bring down unexpected blood sugar highs and deliver boluses at mealtime. 

In Epilectra, superhero Insulator also has Type 1 Diabetes and proudly displays her pump and CGM on her belly. In America, 1 in 10 people will be diagnosed with Type 2 Diabetes in their lifetime, and 1 in 100 with be diagnosed with Type 1. Briefly, the difference between Type 1 and Type 2 is that T2 diabetics produce insulin, but their bodies don’t know how to utilize it to change the sugars from the food they consume into energy. Type 1 diabetics’ bodies don’t produce insulin, so they need to acquire it from an outside source like an insulin pump. But their bodies know what to do with the insulin once it’s inside of them. It’s a wives tale that only older, overweight people get Type 2 Diabetes. There’s an alarming rise in teens developing this condition. Another interesting fact about diabetes is that Type 1 is an autoimmune disorder whereas Type 2 is not. Autoimmune disorders are where the body’s immune system mistakenly attacks otherwise healthy cells and tissues. In the case of T1Diabetes, these are the islet cells of the pancreas that produce insulin.

In addition to Epilectra and Insulator, Epilectra BOOK 1 features superheroes Aupticus, who has Autism (1 in 36), C.P., who manages Cerebral Palsy (1 in 323), and Endo-Girl, who deals with Endometriosis (1 in 10 women of childbearing years). Each superhero’s superability (as opposed to disability) is extrapolated from their disability. Epilectra can harness the errant electrical activity in her brain that causes seizures and shoot it through her fingertips as lightning. The insulin that Insulator uses for her diabetes mixes with her body chemistry to create a shield that “insulates” her from outside dangers like fire, water, weapons, and disease. Though Aupticus hesitates to make direct eye contact, when he does he can initiate neuroplasticity. This superability allows him to manipulate the neurons in his target’s brain to change their behavior. C.P., or Chen Ping as his mother still calls him, can shoot delta waves from his ancient cane freezing the muscles of his target. And Endo-Girl can send the excess blood in her system during that “time of the month” to her muscles resulting in super strength and magenta skin.

The Team SEEZ superheroes work together and independently to make the world a better place and rehabilitate the adversaries they encounter. I say “rehabilitate” because Epilectra thought it important not to judge the villains they encountered, but instead give them a chance to thrive in better circumstances. Afterall, no one is born evil. It’s circumstance that forces one into evil doings, and if circumstances change for the better then behavior is likely to follow. 

My hope is that Epilectra will empower both those with disabilities and those without disabilities. 

For those without – it’s time to view your peers with disabilities simply as “your peers” who approach things a little differently than you do. Big deal. If you’re curious about something they’ve got going on, ask them. I you think they may need a little help, offer it. Find ways to include your friends with disabilities. They’ll appreciate it, and you’ll be amazed what they bring to the table.

For those of you with disabilities – it’s time to take the “dis” out of disability! 

You, too, can turn your disability into a superability by making these transformations:

Transform your shame into pride, 

Transform your “can’t” into capable, 

Transform your hidden information into education for your peers, 

Before you know it, you’ll also be a Team SEEZ SUPERHERO!