What a difference a year can make!

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

November 8, 2014 is a day that will be forever seared in my husbands memory, and in mine. It was a regular Saturday morning. We slept in, and I had just gotten up and was cooking breakfast. I remember turning over bacon in the pan, going through a mental list of things I had to accomplish in the day. The next thing I knew, I was laying on the floor of my kitchen, with my husband looking over me, pressing something to my head with an expression of fear and panic on his face that I'd never seen before. 

Shaken up but calm he told me I had a seizure, and I was alright, but I was bleeding from my head. He told me he had called the ambulance and they were on the way, and I just needed to be calm and hold a towel to my head. The next few hours flew by in a post-seizure induced haze... Not only had I experienced another grand mal seizure, but during the seizure I supposedly stiffened, and fell like a tree to my tile floor. I hit my head hard and was diagnosed with a traumatic brain injury, as well as a busted up shoulder. 

The few weeks after the seizure found me not being able to be alone (I was being monitored for internal bleeding). I had to take disability leave from work as I was put on a strict regiment of cognitive rest, which involved no thinking, reading, watching TV, looking at a phone or computer, or doing anything mentally strenuous. I remember crying to my husband and my parents worried that the very thing that so defined me, my intellect was slipping away. I didn't know if I would be able to return to work, continue my normal activities, or even have a family. They told me then, as did my doctor, that given the proper rest and new habits, my brain would slowly heal and I would get better ... slowly but surely...

AND THEY WERE RIGHT! 

Here I am, nearly one year later, and seizure free. It has been quite a challenging year, and I have had to realize some things about my own limits. 

1. I needed lots of help to recover. I am not one to like to ask for help... but having my seizure made me recognize that reliance on other people is not so much a sign of weakness, but a grace to help us be open to the gift of another's self giving. From the friend who brought us soup that first night, to my parents helping watch me 24/7 in the first few weeks after the seizure, to a husband who has accommodated his life to help me maintain my health... I am overwhelmed by the generosity. 

2. A great boss, and a supportive job can make or break you. One of the most fearful times in the past year was when I went back to my job as a think tank researcher in DC. I was never so afraid of failing in my job due to my cognitive limitations, nor was I so physically afraid of what would happen if I had a seizure. But my boss has been incredibly understanding, working with me to develop a plan to slowly get me back in the swing of things and encouraging me along the way as I rebuild not just my mind and my body, but also my self-confidence. 

3. Behavioral therapy is a great way to address common triggers. I also, as part of my therapy to rehabilitate my mind, was able to pursue cognitive behavioral therapy which helped me to identify physically what happens when I am faced with particular triggers. During the course of my treatment I was able to distinguish between the fear of having another seizure, and being more scared of the 'accident' that can potentially follow one. It also helped me to understand what things in life were truly necessary for me to do, and what things in life were tasks I had placed on myself that I 'ought' to do. 

4. Letting go of the life you imagined is the hardest lesson in life. Throughout this year, time and again, I have had to learn to let go of the vision of life I had for myself as a type-A person... and admittedly it has not been easy to do. I find myself in the season of performance reviews and while I have performed great at work, no performance review out there will truly recognize what I have been able to accomplish. And that burns sometimes - I mean talk about deserving a medal for merit! From not being able to think one year ago, let ago write, present or do anything necessary in my job, to standing up in front of senior White House officials and conducting high level meetings - I really didn't think it would happen in a year's time... and in recognizing that about myself I have found new found freedom. 

5. The life you did not imagine can be better than anything. This is what has most surprised me about my life this past year. While this year looks different than anything I thought, I have been blessed with graces I never imagined would be possible. I have written multiple blogs on my experience with epilepsy, and how to manage expectations in the workforce. I also have been able to cultivate a work-life balance that is truly life-giving... and more importantly I have been able to share those lessons with others! 

Because by God's grace I have come through this past year stronger, healthier and happier than I was before. I have a sense of conviction of helping others to believe in themselves, and a healthy realization that really for any of us, epileptic or not, life is completely out of our control. And I prefer to see that element of the unexpected as life's next great adventure!  


NEXT UP: Be sure to check out tomorrow's post at http://epilepsygenetics.net, courtesy of Ingo Helbig for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.

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. 

What can Yoga teach us about work-life balance?

This evening, for the first time in about two years, I entered my Unity Woods yoga studio to take a class. I was so nervous that I misread the time and arrived nearly an hour early. I shyly introduced myself to the teacher, notably the same person I had two years ago, who asked, "Are you certain Level II is ok for you?". Not wanting to admit maybe I was a tad rusty, I quickly replied yes. I am rarely one who back down from a challenge anyway.

I entered the dressing room where piece by piece I took off the strippings of corporate life. I replaced my hair piece and jewelry for an unadorned ponytail, my skirt and blouse for a simple T-shirt and shorts, and my heels for bare, slightly chipped painted toenails and feet. As I walked into the studio, I breathed deeply, feeling incredibly grounded and connected to the world around me as my feet softly padded through the dimly lit space.

"Om!"...the words escaped my lips as the memory of the days work slowly faded into the background. I slowly progressed through the poses, surprised at both how difficult the simple stances were, yet slightly surprised that my body remembered the movements from the past decade of on and off again Iyengar yoga practice.

At the end of the session, while meditating in in shivasana pose, I started to recognize the lessons anyone can lean from yoga that relate to work life balance. It seems that with the prevalence of new technologies and ways of working there are an incredible amount of articles dedicated to the idea of work-life balance. On one end you have more traditional persons decrying how people being connected at all times is causing serious detriment to not just our work, but our society as a whole as we forget how to relate to one another I face to face conversations. On the other hand people argue that the ability to connect remotely allows people to have more time at home, as they have time with family and friends and can still get on the computer at various times to complete work.

For the record I tend, to the consternation of my fellow colleagues in the Millennial generation, to go for the more traditional route that we all need time to unplug everyday. And here's why...

Yoga is based, from my limited understanding, on two principles: strength and flexibility. Today at my first practice in two years, I saw both principles in stark reality. To begin, the first ten minutes or so of the class today was focused on deep forward bends. For this runner's body, the stretches were a harsh reminder of how inflexible I can be. Both literally and in how I segment my day. As my muscles loosened I reflected on how regimented I had been in the course of my workday; and how that regimentation may have prevented me from a conversation or insight into a problem I had.

During my experiences of flexible work arrangements I have been so protective of what little time in the office I have that I have been accused of being cold, snobby, or overtly professional. This is not the way to be... But that feeds into the second yoga principle of strength.

Did I mention that i went to a Level 2 class today? That meant that in today's class we were already doing head and hand stands. As I lifted my legs up to the wall to do a modified hand stand, I could not believe how much my arms started to shake, and my knees felt weak. I just ran 10 miles this weekend... And a simple yoga pose was kicking my butt! That was when I realized that though yoga seems to outsiders as a flimsy thing for a bunch of hippies to do on a weeknight, holding some of the inverted (upside down) poses requires incredible strength of the entire body. And when it comes to work life balance the same is needed. It is not easy to leave work early to attend to a health issue; it is not easy to be the one person who does not answer emails because you are taking care of your kids; it requires incredible strength to stand up to a boss or a client and let them know their demand are just plain crazy.

And what is more is that this strength doesn't just happen. It is the result of months, if not years of careful reflection and study. There is no way I could do a free standing hand stand today... In fact it could take me years to master the pose. The same is true for mastering the politics of a flexible work arrangement. It takes a lot of time, patience, discipline and practice to get it "right ".

And that brings me to a final thought about yoga. It is different for everyone who practices. Some people can bend over and touch their toes immediately. Others can balance on one foot with their hands up in the air. And still others can tie themselves in a pretzel knot and still carry on a conversation. But only the very rare can do all three.

The same is true for work life balance. Not all of us can do everything. Ok yes there are the rare individuals who seem to be the energizer bunny, for whom three hours of sleep a night is plenty, who can be the best parent ever and the best worker, oh yes and who can run a foundation in their "free time," but for most of us the reality is somewhere in between.

So go ahead and let the practice meet you where you are. Don't focus on what others around you are doing, just practice within your limits. Don't force your body or kind to bend in ways in which you are not ready. If you do, you could wind up getting hurt.... Both literally and mentally. Like yoga, recognize the place where the stillness of the mind meets the action of the body, and recognize you are exactly where you are meant to be