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.

Cognitive disability in a knowledge economy world...

About two months ago, I had a grand mal seizure, during which I lost conciousness and fell to the tile floor in my kitchen. I hit my head so hard, my glasses snapped giving me a large gash on my head, injuring my shoulder, and suffering a very serious concussion, and thus a TBI diagnosis.

Upon discharge from the ER, I was given strict instructions to be on cognitive rest. For two weeks I was not to watch TV, read, or use the computer. In fact, I was told to not really do much of anything that required thought. In a world that is constantly connected, online, and in one where I, as a research analyst, am required to spend long periods of my day on the computer, reading and writing... what was I to do?

Once I was out of the two week period, I was told to only gradually increase the amount of computer usage, reading, and thinking I do. Beginning with 2 hours per day for two weeks, then 4 hours per day for two weeks, until I gradually hit the 8 hour/day mark. As a result, my job and I worked out that I would be on medical leave from my work, as it is very difficult to only be in the office 2-4 hours a day.

At any rate, over the past two months I have had extreme difficult concentrating, have not been able to read anything very difficult (I can read a newspaper in print in small chunks before I start to get headaches), and have had difficulty finding words... like refrigerator. This happened on Christmas Eve when my mother asked where she should put some leftover salad and I responded... in the... in the ... thing that you put food in that is cold... My spelling has become atrocious (the spell-checker has had more use lately than ever before); and all in all it has been a frustrating and frankly terrifying few months.

All of this has had me thinking what, exactly, will happen as our knowledge economy grows. The world still has much to learn on the subject of physical disabilities more broadly, but what about those disabilities that one cannot see - that are invisible?  What happens when a colleague, through no fault of their own, experiences lapses in concentration, memory, vocabulary, or even has mood swings as a side effect of medication or even as a result of a disease?  

Our society, in short, is not ready to deal with this fact. When I was in the consulting world I (having been diagnosed with Epilepsy - an invisible disability) worked hard to try to change the culture of the firm, to make it easier for those with similar disabilities to have the work life balance so desperately needed by those trying to manage a chronic condition. I ultimately left the firm as I was no longer able to do the job well, at the level of performance that I desired, without putting my body at physical risk due to the demands of being a consultant.

In a world where everyone is plugged in, and much emphasis is put on cognitive skills, and even more is being researched to try to figure out how people think, what types of programs are being put in place to help knowledge workers who find themselves temporarily or permanently without the facilities of their minds? The answer is none.  Most managerssee many of the above symptoms as signs of an individual not having the discipline to concentrate; or not having proper attention to detail; or just plain laziness.

What, then, should we do?

The first part is raising awareness. The NFL, and football programs nationwide, have begun a conversation about the impact of concussions on athletes - but what about the rest of us? PTSD, and similar disorders, have been written about at length by multiple authors - but what about those of us who experience similar symptoms due to underlying issues?

It is an important issue that requires attention today. At the very least organizations should conduct training for their mangers in invisible disabilities and how to help colleagues who struggle with cognitive issues. Managers should also be willing to embrace alternative work schedules and telework opportunities to help those who work actively to balance the needs of their health with a knowledge workplace. A word of caution however: for those of us who struggle in this area the ability to always be online or have the ability to telework can, in some cases, lead to situations where employees are never truly off the clock. I think managers should be wise to declare email few periods for their teams, be it no email or work on the weekend or taking one night a week to be email free, as Boston Consulting Group has done to great success. (https://hbr.org/2009/10/making-time-off-predictable-and-required) 

As we continue to expand our knowledge of how the mind works and how employees think this issue will become ever more prevalent and, hopefully, better understood as people work through the reality of having invisible disabilities and the impact of traumatic brain injury.