The Mile Four Fight

I applied for an acting gig recently – a chance to play an extra in one of my favorite TV shows, Chicago Med, as a runner. I never thought I would get a call offering me the chance to do this, nor did I think I’d be so excited at the thought of spending 12 hours waiting to run a short distance when I work so hard to run long distances quickly. Plus, I could get paid for something I usually spend money on! Then reality hit. What if I can’t get any work done while waiting for my role? Worst of all, what if I had a seizure on set? The first what if is an important “duh,” the second one is a painful reality.

I realize some people may not believe I have epilepsy because I run, but I say it is largely because of it. Running makes me feel like I can beat epilepsy while my brain tries to prove otherwise. Much like an old friend and I recently discussed, it’s therapeutic. To me, nothing feels better than a race bib to give the curve balls in life a big “See!” It’s why I frame this picture, taken during my first marathon. Four weeks from now I’ll be running the Chicago race for the Epilepsy Foundation of Greater Chicago which is part of Charity Village for the first time! Please consider a donation of any size, it means the world to me. Click here to donate.

For two years after I was diagnosed, doctors did not know a brain tumor was to blame. More like the person reading the early MRI needed glasses or classes… but that’s another story. Back then, I had a dozen seizures a day and running or acupuncture was the only thing that prevented the mysterious episodes for hours. It has since evolved with significantly fewer seizures but no known trigger. Now they’re just as likely to happen on the running path as they are at my desk, all in the first few hours I’m awake.

I recently had one on mile four of the Elmhurst Running Club’s 20 mile training course. My partner at the time says I simply stopped talking and stopped running, which is typical. 30 seconds later I want to speak but words are stuck in my gut and throat. I know my name and address but it takes several minutes to spit them out. I forget what my first conversation is shortly after, but it’s clear to those on the other end.

I joined the club, in part, to feel safe. I wanted to make friends with other runners and I knew I shouldn’t be on the path alone for long distances. I wear a bracelet that  reads “epileptic” along with a name and emergency contact information. When this happened at mile four, my running partner knew the drill and we lucked out when another runner friend who knows my story and whose family member has epilepsy, was right behind us. I am forever grateful for how they cared for me that morning. They stayed cool and called the phone number to get me home. As soon as I could speak, I demanded we call to cancel the ride. Bossy and likely rude, I insisted epilepsy had stopped me from doing too many other things so I wasn’t going to let it prevent such an important part of training. I’ve never paced 20 mile so fast and felt so little pain the next day, either. I have also never been more honored or determined to run for a cause. Instead of focusing on the what if element during the race October 9th, my goal is to remember the names of 26 other members of the epilepsy community, running a mile for each. Please feel free to share a name and story with me.

Much like those who have seen countless of these over the course of years, no one showed any frustration, fear or discomfort during that recent mile four fight. But I feel horribly guilty, like I cause added stress everywhere I go. I already told my mom – my emergency contact – not to worry about race day. The truth is, I hate the idea that a seizure could throw such an important morning off. I fight that “what if” in life among countless others, which hover lately like the recent humidity.

Then I think of those who can’t function at all because there is no cure and in too many cases no treatment. One couple I know has a son not much younger than me whose epilepsy leaves him severely disabled, robbed of the life he deserves. I talk to his parents about treatments and feelings, something I pray helps them understand what their son can’t describe. Unlike what happens to me, he fights to make it through the day. A new medication is working for him right now, something so rare that they seem to hold their breath when they report it. They tell me he has so many scars from injuries that his mom still follows him around just in case. A mother the rest of us can learn from.

I think we all spend a lot of time worrying about the curve balls life throws when they will land wherever they want. Think about the lyrics “But if you try sometimes you just might find, you get what you need,” by the Rolling Stones. They refer to the focus in the 60’s: love, politics and drugs, how those might seem like a great idea at the beginning but not so much at the end. A simple yet profound wake up call about so many subjects. Many of us runners take off motivated by adrenaline induced confidence, later fear our legs are falling off but continue to focus on the feeling at the finish line. It’s all I need anyway. Along with a lot love and Advil.