Epilepsy – Forcing Me To Change My Life
A quick intro to Beth:
She's 35, from Washington, DC (by way of Detroit), and works as a Career Advisor for Georgetown University.
|Her favourite foods:||Lasagne, galumpkes (stuffed cabbages)|
|Her favourite activities:||Running, reading, and singing (she cantors for her church and sings in a semi-pro choir, Choralis, from time to time)|
|Her favourite book:||The Dragonbone Chair, by Tad Williams; non-fiction: Development as Freedom by Amartya Sen|
|Her favourite singer:||Enya or Sarah McLaughlin|
|Her greatest inspiration:||Her faith|
|Additional fact:||Beth once travelled to Tibet for a summer|
My journey started as a junior in high school, when I had my first tonic-clonic seizure. I was on medicine until my senior year in university, when testing revealed my brain patterns had normalized. My neurologist, at the time, said it was likely a paediatric form of seizure disorder that I likely grew out of. I was off medicine and sent on my merry way. Fast forward nearly five years, when as a consultant at Deloitte, I experienced my second tonic-clonic seizure while at a work conference.
And thus, started my official journey with epilepsy. While my journey is not nearly as constant as others (I’ve had only four seizures in my life), I can still say sometimes, some days, epilepsy is a real pain. My journey has been a struggle between my desire to be the best, to push myself, and to do something to make my mark on the world in conflict with my very real needs for rest, schedules, and balance. I am constantly a type-A personality forcing myself to become a Type-B... and it's not been easy.
To many who know me, or work with me, I look and act like a typical person who has nothing wrong with them. Save stitches after one seizure, during which I smacked my head on a tile floor and broke my glasses, I never look like there is anything wrong. I wear a medical ID necklace, and an embrace watch, but people pass them off as an Apple Watch or a nice piece of jewellery and move on.
Being “invisible” does have its perks, as I’ve written about before (The original post was on disability.gov’s blog but it was taken down in the midst of the new administration’s transition). Yet most don’t understand how much of a constant companion epilepsy is in my life. I’d love to say, on my brave days, that having epilepsy will never stop me or slow me down (and many times, that has been the case), but I would be lying if I said I didn’t think about it on a daily basis. It is always there over my shoulder, and those of the people I love. If I feel weird one day, I wonder if it is an aura. If I don’t get sleep one night (as is often the case having a young child), I worry about having a seizure the next day. I have alarms on my phones that go off when it is time to take my medicine. And having epilepsy and living in fear of when another seizure may strike, or could strike, governs many of my day-to-day decisions about how to spend my energy.
The first time I recall epilepsy impacting my drive was my senior year of high school. I ran cross country in a very competitive squad. The year prior I had even had a PR of 21:52 for a 5k. I definitely recall that there were days during practice, or during meets where I was afraid. I was afraid to dig deep down into the depths to use what bit of strength I had left to push a little more. I was afraid to use up all my energy, as I was afraid that such perspiration and dedication could be what put me over the edge.
That feeling of not being able to “take it to the max,” as one friend coined it, continues. Whenever you hear talks or read articles or watch a TEDx video by “successful” people, you always hear how hard they worked. How almost obsessive they are in pursuit of their goals... how they “leaned in.” The fact is, with a condition like epilepsy, I don’t want to lean in. I don’t want to push myself to that limit because I don’t know what very real (and even dire) consequences they may have.
I know some of it is pride, but I hate having to take notes, when I used to be able to remember things (and no, it's not just me getting older, though I am sure that doesn’t help). I could always put together disparate pieces of information and do it well, and speak intelligently. I worked at a consulting firm and later a think tank, both of which required you to process large amounts of information quickly, think on your feet, and to always be on 100% - or really 110%. I’ve had to leave jobs, always of my own will, in a desire to have a healthy environment, and keep things in balance so I can work without putting my body at risk for a stress-induced seizure. But I’ve hated every minute of it.
I’ve been blessed to go to wonderful and challenging Universities in my life and have always been able to get through relying upon my brain. Yet in the months especially following a seizure, I am not the same person. Thoughts are muddled, and I am often tired, depressed and irritable. I forget entire conversations, which irritates my family and co-workers, as well as my own self.
At my newest job, which is in an entirely different career, and more fulfilling than anything I’ve imagined, I wonder how my life may have been different (dare I say “successful” in the eyes of the world) if I didn’t have epilepsy. I haven’t pursued jobs in industries, like politics, or international development, as I know the hours and the stress with those jobs isn’t healthy for me. I get jealous when I see people that I know I am just as talented as, just as smart as, get promotions and awesome leadership positions, when I physically cannot do it. Or when I see people with large families, when my own health is a major consideration about growing my own.
Sometimes I think this is a blessing - having epilepsy has taught me to be mindful about how, where and when I spend my energies. But other days I get angry that I have to think about these things. What I wouldn’t give to have a day to just be - and not have to think about my health. And that is when I can say that yeah, epilepsy is a real b*tch.
But I still try to live my life with as much gusto as I can. I want to be a positive role model for those I work with, my friends, and family. I want to show the world that something like this is not the end. It has taught me more about myself, physically and mentally, and has given me the most tremendous respect for my own brain and my own path in life - and that is something that I wouldn’t trade for all the energy in the world.