Thursday, November 17, 2016

Epi-what?

November is Epilepsy Awareness Month.  Ten years ago, I wouldn't have known — or really cared — about that little fact. I was one of billions of people in the world who felt no need to know or understand epilepsy. But then, thank goodness, that changed. Not only did I learn about this vexing neurological disorder, I was given the chance to work with some truly inspiring people who taught me  some of the greatest lessons of my life.

In February 2007 I was offered a editorial job for a custom publishing division of Time, Inc. I had experience in health reporting, custom publishing and marketing, so it all added up to a great job, but there was a catch: One of the publications I was asked to manage was all about epilepsy.

Just like that, I was charged with developing content about a somewhat obscure neurological disorder that effects 1 in 26 people. And I knew nothing about epilepsy except for what I'd seen on TV.

Suffice to say, I was nervous the first time I spoke to my clients at the pharma company who were underwriting the magazine. Learning about epilepsy was like taking on a new language. Since most people don't like to talk about this highly personal chronic condition, I couldn't imagine how I would find subjects to interview for the feature stories. Fortunately, the pharma had created a patient group and I was given access to them.

Slowly, I got to know these men, women, girls and boys whose common denominator was a condition that caused their brains to misfire. They all had epilepsy or had loved ones with the condition, but each story was as distinct as their symptoms. No wonder the general public has a hard time understanding this disease.

Epilepsy causes physical and emotional turmoil in the lives of those who suffer from uncontrolled seizures. One-third of those who have this condition cannot be treated medically. For those who do find a treatment (or combination of treatments), they live with the specter of a debilitating condition that can morph and return anytime they are stressed or going through a biological change, such as puberty or menopause.

Their stories amazed me. Could I have such a good attitude if I had seizures? Would I be as upbeat as the moms I met, if my son had epilepsy? No matter their symptoms or set backs, these individuals were willing to share their stories with me and with the readers of our magazine because they wanted more than anything to end the stigma that has dogged epilepsy since Socrates.

Interviewing these people with epilepsy and their caregivers helped me to become more open with my own short-comings and limitations. Listening to them talk about how they were not willing to give up or settle less than the best possible treatment,  gave me courage to overcome my own challenges. If a man who had to relearn how to talk and feed himself again could remake his life and be happy, then I could certainly relearn how to live and be happy after going through a divorce or losing my job.

Yes, in 2009 — the week after I lost that awesome job, which placed me in proximity to these inspiring people — I interviewed a young woman who had lost everything when she started having seizures at age 22. She was on her way to realizing her dreams with a great career and a new family when her first seizures altered her course. In fact, she almost died in a horrible car wreck after having a seizure behind the wheel.

As bad as I felt about losing my job, it was hard to muster self-pity after hearing her story. Sure, my life was in turmoil, but nothing compared to what that young lady experienced. Due to no fault of her own, she lost not only her job, but her home. She ended up in a women's shelter with her young daughter. And yet, years later, at the time when we spoke, she was graduating from college, beginning a new career, and raising three children. That, my friends, is inspiration.

Last week, I got to spend time with these amazing people again. You see losing my job didn't mean losing touch with them and their stories. For the past seven years, thanks to Time's editors, I've been fielding freelance assignments for the magazine I once helmed. And although much in my life changed during that time, I endured as well. In part, my resilience came from the lessons I learned from my friends with epilepsy.

From them, I learned how to listen — really listen. I learned the meaning of true compassion and honesty. I learned how important community is and how much healing occurs when we reach out our hands to each other. I learned to be a better reporter and a more compassionate person because of knowing all these courageous people. And yes, I learned A LOT about epilepsy. I can now talk with neurologists without missing a beat. But that's not what really matters. What matters is that I discovered when I step outside my comfort zone, I can embrace so much more than I ever thought possible.

So, this month, I want to say thank you to all those amazing people who live with epilepsy. It's been an honor to cover your stories and help shed light on a very confusing and complicated disease. Thanks to you, I didn't give up when my life became difficult. I may not have seizures, but I do know how it feels to have the rug pulled out from under me. Learning to live with the realities of life is the greatest gift that any of us can ever enjoy. Things go "wrong" all the time (right?), but there is always something to learn — if I am open to the possibilities. 

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