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.

New blog on Disability.gov: What it's like to be invisible

Hi all! Given the great feedback I had to my last post, I was given the great opportunity to do a guest blog on Disability.gov's Blog. I wanted it to be more of a guide for those who also have invisible disabilities to be able to have the courage to find the help and support they need to manage their lives, jobs and education in a way that helps them to be successful.

In the meantime I do hope you all take a look at some of the other blog posts, and the great resources available on Disability.gov. There are things there for those who have disabilities, employers, teachers, etc. It is truly an invaluable resource.

Enjoy! "What it's like to be invisible"

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.

"How Fascinating!" A detail oriented person and a big picture thinker agree on one thing

I was talking to a friend earlier this week. We were discussing, of all things, things we had heard at our jobs that we needed to work on. He said he was encouraged to work on thinking big ideas, taking initiative, and the next step. I said mine was, as always, attention to detail.

We then got into a bit of a philosophical discussion about how we thought that the skills we've been told we were lacking are, in our own separate opinions, what is necessary for success. I told him that I've always thought that "detail oriented" people have better job promotion potential because they see all the little things that employers tend to like. He told me he had the opposite view, that he feels that he is capped out at his level unless he can really take his ideas to the next level, learn to speak up, lead, etc.

I remarked how fascinating it was that we both thought exactly the opposite. As my one mentor said, whenever in doubt at work, or a professional situation, you always respond with "how interesting!" I suppose it is the adult version of "Supercalifragilisticexpialidocious!" - which by the way I do want to figure out how to work into a real life situation.

I digress - I thought that in the current business world, there is an expectation that we are all things to everyone. And I wondered how smart of an idea is that, really. For example, take my friend the detail oriented person. As he progresses he will be expected to go into management, a role he may or may not be suited for. Who knows, this person may be comfortable in a more technical environment.

As for the big picture thinker, I am all well and good, until I forget a detail. I can have a lot of good things at work about performance, but one small mistake and that is all I hear. Both of us are at a disadvantage as current business practices of acceptable performance and management systems are set up for one person to be good at everything, especially as you rise in seniority.

If you examine most organizations as you progress you automatically get into management situations, sometimes with no training. Now for some this may present an exciting new opportunity, but for others annoyance ar not  doing what you enjoy, to fear of leading. Likewise, some people who have the penchant for leading may not have the opportunity to do so as they have not "proven" themselves in a particular position, or in certain tasks required of them.

Thus I think the business world needs to get out of the mindset that rising in ones career naturally means you enter management. Such is not always the case nor should it be. This is where I think the government has a good example. They have senior levels of expertise (GS 14/15s) as well as the Senior Executive Service, which gets into the more senior posted requiring a very high amount of management skills. While the system is not without its own flaws, organizations should look to this and a possible model for how to manage different types of thinkers. 

Again just a thought...  In the meantime I recommend checking out Dan Pink's book, "A Whole New Mind: Why Right Brainers Will Rule the Future." He speaks of the history of why certain skills, namely those of the left-brained, are what is desired in current businesses. His theory is that the more creative types will soon have the edge when it comes to business, but first we have to make our way and achieve success in a logic-oriented world....

A Whole New Mind: Why Right-Brainers Will Rule the Future

A Whole New Mind: Why Right-Brainers Will Rule the Future