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. 

Tuesday, November 8, 2016

Election Day Meditation: "Water is taught by thirst"

With the outcome of the Presidential election to be decided within the next 24 hours, I am trying not to be afraid today. I am not Republican or Democrat or Libertarian, Green or Liberal. I don't take a pure party line. I've always voted for the candidate who best reflected my principles and whom I felt would best serve our country. 

But because I'm not omniscient and cannot possible know for certain who would best fit the bill, I also trust our democratic system. I trust that our collective consciousness will prevail. What may be "best" for me, may not be "best" for the majority of my neighbors. I believe in a higher power.  I have voted in countless elections and trusted, and I have never felt the sense of impending danger ... until today.

So I'm sitting with this feeling of panic and anxiety today. Where does it come from? It is that familiar feeling of being helpless, out of control. Why? Have I ever really been in control of our country's politics? No. Have I ever been harmed irrevocably by decisions that were by our president? Not sure.

I have felt this feeling before, although not related to politics ... I felt this way when my marriage was ending. And I felt this feeling when I knew my job was in jeopardy due to downsizing. This anxiety is not fear of something I know; it is fear of change — of the unknown. The feeling stems from my conscious self trying to reject the reality of what is actually happening. The tightness in my body is conflict between reality and my ideals.

I can honestly say that I have never felt this fear about the election of any other president. Regardless of the outcome of today's election, there will be shifts in the world as we know it. Some changes may seem adverse. Other changes may appear to be beneficial. But there will be changes in our country. I cannot know the extent of those shifts in legislature or attitudes, but tomorrow there will be a lot of people who will be upset and disgruntled. Many of my neighbors will be sullen or outraged. Some might even turn their deep-seated fear into violence. There will be people in countries around the world who I will never meet who will take the results of our election as an insult or threat or a joke or a sign of weakness.  So there it is: My fear. And the only way I know to overcome fear is to face it, and give it a name.

 How did we get here?

Yes, Trump and Clinton differ many ways but there seems to be a common denominator: fear. Trump played off our fear of terrorism and our fear of economic depletion and our fear of politicians. Whereas Clinton spoke to our fear of having a president who was a misogynist, a liar, a cheat. Is it any wonder I'm feeling nervous right now?

To face my free-floating anxiety, I have to become grounded in facts. Although I'm not a political expert, here is what I know: Today did not just "happen". 

A billion actions, both intentional and unintended, occurred to bring together the two candidates on today's presidential ballot. In part, we ALL created this day. Whether we supported a candidate or an issue directly or by omission, we helped manifest this reality. There were many, many causes and conditions which had to "ripen" in order for today's election to take place. I'm not aware of many of them, but one comes to mind. 

Whether you watch and read it or not, we support a media that makes billions of dollars off of outrageous talking heads and controversy. Although Clinton did not exactly shy away from coverage, Trump, in particular, used his outrageous personae to dominate both traditional and social media. But no matter how loud and persistent the voice, these media channels are only successful if there is someone to receive and react to the message.  

A record 84 million viewers tuned in for the first Trump v. Clinton debate. (To put this in context, the 2016 Superbowl drew approx. 114.4 million viewers. The 2016 premiere of The Walking Dead drew 17 million viewers.) I don't know how to calculate the revenues earned by the various news and social media sources from this election cycle, but I suspect it too is record-breaking.  In short: Controversial candidates = Greater interest = Larger viewership/readership = Greater advertising revenues. 

But before I vilify The Media and all of us who enable train-wreck TV, I need to consider another perspective. Because where there is a negative outcome, there is always a positive side.

Could this toxic election season serve a more wholesome purpose?


In a 2011 Psychology Today article entitled The Moral of the Morbid, Eric G. Wilson, Ph.D. posits that our attraction to discourse and disaster is necessary to our mental health. Citing Carl Jung, Wilson writes: "[Jung] maintains that our mental health depends on our shadow, that part of our psyche that harbors our darkest energies, such as melancholia and murderousness. The more we repress the morbid, the more it foments neuroses or psychoses. To achieve wholeness, we must acknowledge our most demonic inclinations."

If Jung is right, then our current political climate may actually be healthy in that it is allowing to surface — rather than suppress — our collective fears with the darkness (such as climate change and terrorism) in our world today. Witnessing the chaos played out by both Democrats and Republicans may be what we need to shock us into a deeper desire for a kinder, gentler, better America.

"When we agonize over what has cruelly been bereft from us, we love it more, and know it better, than when we were near it," Wilson writes. "Affliction can reveal what is most sacred in our lives, essential to our joy. Water, Emily Dickinson writes, is 'taught by thirst.'"


Today, after witnessing the train wreck of this election cycle. I thirst for leaders who are wise, compassionate and filled with integrity. I also acknowledge that I (and everyone else in our country) has played a part in affirming the present situation. So now the questions are:  Where do we go from here? How do we encourage and reward integrity in our leaders? What can we do differently to ensure that our thirst for peace is sated?