Whenever I hear the word mercy, I think of two things: church and death.
That may seem a bit simplistic (and morbid), but it’s true—I think everything I’ve been told about mercy boils down to these two things: God’s mercy for sinners and how death can be a mercy for the suffering. The word always carried connotations of desperation and vulnerability, so, naturally, since I spent so much time pretending that I was invincible, it wasn’t a word I that I really paid attention to.
That is, until I had to.
I spend most of my workday pretending to be invincible, and I usually make a pretty good show of it. I am in charge of a bunch of teenagers and it’s my job to make sure they sit down and shut up and learn, so I have to be in control.
And epilepsy is the complete opposite of control.
If I lose it in front of those kids, if I start shaking and twitching and clenching and babbling in front of them, I--
I don’t know.
I don’t even want to think about that.
I’ve done about everything I can do to prepare for that horror. I’ve told my students about my condition. (Even though most of them already knew—there are no secrets in a small town.) There are hot pink posters hanging up all over my classroom explaining what to do if I start seizing. But even still, the idea of having a seizure in front of my students looms, a terrifying and humiliating possibility.
I am in such a vulnerable state when I’m seizing. It would be so easy for my students to take advantage of my unconscious state—to let me fall over and repeatedly bang my head against the floor, to point and laugh if I wet my pants, to take pictures (or worse—video) of my episode, to walk out of the room and leave me there alone.
But I don’t think they will.
To me, I’ve found that mercy is this: holding the power to do harm and choosing not to do that harm.
I am at the mercy of those kids.
Sickness sucks. Really, it does. It’s awful and unfair and scary and…well, sucky.
But it does make us kinder.
People have been so, so kind to me through this trial. And I’m not talking about pity, either. I’m talking about my teenage students who are sensitive to my needs, who are quiet when I need it, who ask about my health and do what they can to help me. I’m talking about former students of mine (and in some cases, even their parents) who have been driving me home from work (40 miles!) at least once a week. I’m talking about coworkers who took over my supervision and detention duties for the rest of the year. I’m talking about a sub who volunteered to cover for me one day a week for the rest of the year to ease my burden of finding rides. I’m talking about the get well cards (some homemade!) and phone calls and flowers and signs and balloons and cakes and gifts. I’ve been overwhelmed by generosity and kindness, and a lot of it has come from teenagers.
But it does, strangely enough, unite us.
Since my diagnosis, people have shared their own struggles with sickness with me, and I’ve been brave enough to share mine with others as well. I reached out and shared my own story with an epileptic student at the school where I teach. I wanted to show her that she wasn’t alone in this. (She is literally the only other epileptic I’ve ever met—I was feeling pretty alone myself, truth be told.) It was nice to talk to another person who understood what I was feeling, who understood my frustrations, my fears, my side effects, who couldrelate. And later that same day, another student came to me during her lunch period and told me about her own struggle with Lyme disease, and we bonded over our aggravations about feeling betrayed by our own bodies, about losing control, about the horrors of treatments, especially ones that don’t work.
Yes, sickness sucks. Find someone who disagrees—I dare you.
But it reminds us what we can do for each other. It draws us out of ourselves. It makes us less selfish. It makes us better people. It reminds us how short life is, how precious, how beautiful. It has been a blessing to be the recipient of such an outpouring of grace, and I can’t wait to pay it forward.
It is a hard thing to grasp: being disabled.
It’s especially hard when my “disability” has really only affected me for TWO HOURS AND SEVEN MINUTES of my entire existence. (If my math is correct, that’s only 0.00075% of my life.) The rest of the time, I’ve been pretty much fine.
But I carry that label. I am disabled. I am protected by the Americans with Disabilities Act. (Which, I should add, I am grateful for—I’ve needed its protections.) I even went on disability leave for a few months last school year, due to complications from a concussion and neck injury I suffered while seizing and the fact that I legally could not drive for three months following the incident, as per state law.
In spite of these things, though, I’ve never really thought of my disability as all thatdisabling. It has made some things harder, true, but the only thing it’s really kept me from doing is…well, driving.
I abided by the law after every seizure: no driving for three months. Even though I felt fine, even though I (mistakenly) thought that law was completely ridiculous, I didn’t drive. I used to count down the days/hours/minutes/seconds until I could drive again, until I could enjoy the sweet, sweet freedom of going wherever I want, whenever I want.
I’m not counting down the seconds to that freedom this time. Not minutes, not hours. Not even the days. That three-month restriction no longer seems so ridiculous. I get it now.
Honestly, I’m not entirely sure I ever want to drive again.
Epilepsy is such an unpredictable disease—it can strike whenever. Even while driving. (Which, by the way, was the scariest effing thing that has ever happened to me…) Sure, I was fated to live/rescued by angels/given a miracle/just plain lucky, but next time…well, I don’t ever want there to be a next time. I don’t want to think about how things might have ended differently, how I might have been hurt or killed, or worse—how I might have hurt or killed someone else, without even knowing it until I shook out of my post-epileptic fog and realized the horrors I had caused.
So now I’m at a crossroads. (Hmmm. No pun intended, but it is a rather fitting metaphor.)
To drive or not to drive—that is the question: whether ‘tis nobler to take the risk and drive myself, or to play it safe and rely on others for all eternity. (Sorry, that was a bit dramatic—my apologies to Shakespeare.) Sure, I could get back in my Honda after these three months pass, but now that I know what could happen, my epilepsy feels like an alcohol buzz: I know I probably shouldn’t get in that car. I know the risk.
Basically, I’m either an accident waiting to happen or a burden on others. I don’t like either one of those options.
To me, this is what has been truly disabling.
I live in the middle of nowhere and I love it—it is gorgeous and quiet and free. But part of what I love about it is that it’s an escapefrom my hectic life. If I am confined to this house, if I choose to never drive again, I fear it will become more prison than escape.
Then again, writing is literally the only career I’ve ever truly wanted. And writing is a lonely job. It requires isolation. I entertained the possibility of other professions, but they were merely fads: surgeon, punk band manager, lawyer, opera singer—heck, eventeacher, to be perfectly frank, even though I’m teaching now and I love it most days. But ever since I learned what a book was, I longed to write one. That desire has never left me.
Maybe this potential isolation is a gift. Maybe it’s a chance for me to invest in my passions without distractions. Maybe it’s a chance for me to learn patience. (I’ll admit, that’s a lesson I could use….) Maybe it’s a chance for me to get to know those who are kind enough to cart me around and to cultivate those friendships. Maybe it’s a chance to turn my loneliness into my dream.
Two roads diverge in this wood, and I—I’m not sure which I’ll travel by.
This choice could make all the difference.
(Apologies, Robert Frost.)