Epilepsy Stigma Blog Relay: When Work/Life Balance isn't a balance - it is a necessity

This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Last summer the internet was a buzz with Anne-Marie Slaughter's article "Why Women Still Can't Have it All." In her piece, she talked about the role of women in society and how it is really impossible, without a lot of help to be that super woman. The backlash, the social media stories, the tweets, and everything that has come out since has fallen on both sides of the argument. But what gets me is still this pervasive thought that when you want something bad enough, you can do it all... but in my case that hasn't always been true. 

I say add on a case of epilepsy and it is very difficult to be a super woman. I have had epilepsy since I was a junior in high school when I had a grand mal seizure before class one day. And while I've only had three seizures in my life, each one has forced me to come face to face with my very real, and sometimes incredibly frustrating limitations. 

Living on the edge... well within reason of course!

The common thread that ties all my seizures together are periods of extended stress... the first in high school, the second early in my career as a consultant, and the third just seven months ago following an incredibly stressful period of time at work...

Just before my second seizure, I was up for promotion at a major consulting firm. I was working long hours, traveling, and loving my job. I was active in groups in Washington, D.C., taking on leadership positions, and doing all the things that a young twenty something, single woman is supposed to do. The seizure up-ended my world. My neurologist told me in no uncertain terms that I could not work the hours I had been keeping and still stay healthy. what was something that was a background in my life, all of a sudden became a defining point in my career. 

I immediately set about to the Herculean task of trying to change the culture of my company to be more aware of, and responsive to the needs of individuals with invisible disabilities. While I couldn't work 60 or 70 hours a week, I made bargains with my bosses that "I can do in 40 hours what others can do in 50." And for a few years it worked. It worked so well that I was even invited to a highly selective Leadership Development program where I was able to research the latest trends in cognitive technologies in team and organization management. But as I climbed the corporate ladder, slowly I saw my days becoming longer, my stress levels rising, and my exhaustion becoming more prevalent. At the conclusion of my fellowship I made the agonizing decision to leave my job... a job I was successful at, a job in which I had a future, a great paycheck, and opportunities opening before my eyes. My friends and colleagues thought I was crazy, passing up on such an opportunity. So why did I do it? 

Because I knew I couldn't cut it.  I knew enough about my body to know when I was starting to push it too much. Because my epilepsy wasn't visible, the firm seemed to be growing tired of my so-called "excuses" for working less hours. They kept on wondering when I would be able to work "normal" hours; when I could take on more responsibilities; and how much I would be willing to do for the good of the firm.  I knew that I would soon be expected to maintain higher hours, even more responsibility, and I knew that my body would not keep up the pace. And so I took another job.

Fast forward another two years, and to my newest employer ...  Really one of the few places that puts their money where their mouth is when it comes to the health of their workforce (seriously senior staffers will question why you are at the office after 6pm). And still my epilepsy caught up with me. After a period of long days and weekends writing a paper (a culmination of a year's worth of work), I had my third grand mal seizure, during which I suffered a horrible concussion. I was on cognitive rest for a few months, was not able to work, and at the very early onset was told not to think. For a research analyst at a think tank being told not to think - this caused a huge crisis of identity. Who was I without my brains and my intellect? Who was I, if my increased dosage of my medications made me slow and sluggish... What would happen if the side effects never went away? My bosses already saw my  lack of concentration as laziness, or a lack of interest in my work. My vocabulary blanks were associated with me not being able to "think through situations" as opposed to my nerves misfiring... my very performance at my job was totally out of my control. 

Punting at my Alma Mater

So what have I done? I have had to learn the lesson that work-life balance for me isn't a choice, but a necessity. And that at one time, what work life balance meant (i.e .going from 60 to 40 hours a week), now means something different (working at most 40 hours a week, taking multiple brain breaks throughout the day, doing no communication after hours, etc.). And it is difficult. I have to be patient with myself. In a high powered city like DC where everyone is connected, and everyone is on the up and up, I feel like I am on the bleachers watching a game that once I could play, but can no longer. 

And though it sounds as though I regret it, I too have come to know my strengths. In a world that is always 'on' and always plugged in to some type of device, I have learned how to savor the slow moments. How to make time for meditation and prayer every day, how to be kind to my body through good exercise without going overboard, and ultimately how to be proud of myself for who I am even with these struggles. And quite honestly, to recognize all that I have been able to accomplish, and the great blessing that has been my life. During my time with epilepsy I was accepted into some of the world's top universities for my undergraduate and graduate degrees, and graduated with honors. I've traveled to Tibet, China, Lithuania, France, and Norway; camped out overnight with over 2 million people in crowded fields in Rome and Madrid, backpacked across northern Spain on the Camino de Santiago, done study abroad programs in Japan, and learned a few languages along the way. I moved to (and survived in) a foreign country and then a large city on my own, navigated the world of corporate consulting, met my husband, and finally realized before many of my peers when it was time to stop the rat race. And all this before I was 35!

Post Marathon Finish!

While I am still frustrated with my latest go-round after my last seizure and injury, I too know that this is temporary, and that many of the habits (good sleep, low alcohol consumption, stable diet, and routine) are ones that will serve me later on in life. 

And I realized I am not alone. This past fall, I was honored to Run the Marine Corps Marathon, raising over $1,600 in the National Epilepsy Foundation's Athletes vs. Epilepsy Campaign. With every step I took, I heard the clanging of my medical ID necklace - constant reminder of my limitations... but with every step I took, I also grew stronger and more determined to cross that finish line. And was surrounded by others, just like me, who were taking it one step at a time, one day at a time. And that determination, really, has been what has gotten me through. 

 

Looking out at all the possibilities life has to offer

So maybe my goal of a PhD may take a little longer; maybe being an adviser to the President, or an Ambassador to the UN won't happen by the time I am 40...or 50... or even 60... maybe being a good wife, friend and (God-willing) a mother will take all the energy I have. Because I know my dreams will happen, and in ways I cannot even imagine... I just have to be patient with myself and know that I am exactly where I am meant to be. And that means proud of all of who I am, all that I have accomplished, and living well with epilepsy. 

NEXT UP: Be sure to check out Amanda Filippone's post on Epilepsy Stigma.