Mercy.

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--

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.

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.

Sickness sucks.

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.

Disabled.

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.)

On Sickness and Rainbows.

I think, when you’re standing in front of the preacher reciting your wedding vows, the words “for better or worse, in sickness and in health” come out so easily that you don’t fully understand the magnitude of your promise.  Even if you mean them with your whole heart (and I did), they are just words on that day, because they have yet to be tested, because you can imagine nothing but perpetual sunshine and lollipops and rainbows in your marital future as you stare into your lover’s eyes.

There will be rainbows, true.  Lots of rainbows.

But not without storms.

(That’s how rainbows work, see?)

I mean, when my husband proposed, I had a pretty good idea that married life was gonna be great.  (And it totally has—he’s amazing.)  But on that day nearly nine years ago when we made those vows, I pictured the rainbows.  I could not fathom the storms.

In sickness and in health.

Those words are pretty easy to say when you’re both healthy.

My “sickness” has proven to be one of those storms.  I hate being “in sickness,” especially when I feel like I’m “in health” 93% of the time.  I hate it, hate it, hate it.  I hate the “worse” parts of this whole epilepsy mess.  It has been stressful and scary and uncertain and awful in so, so many ways.  But it has done more to prove the strength of our vows than any rainbow ever could.

I’ve always said that I’m married to the nicest man in America.  My husband has always been a caretaker: he helps little old ladies with their luggage at the airport.  (I am not even making this up.)  He blows out my grandma’s driveway when it snows.  He recycles.  He holds doors for people.   He volunteers.  It was his idea for us to get licensed as foster parents.  He’s always been good to others.  He always cares for those in need.  It’s one of the things I most love about him.

I admire my husband’s caretaker ways, but, ironically enough, I have always idealized the virtue of self-sufficiency in my own life.  I am independent to a fault—always have been—and I hate having to need anyone, even him.  I just want to do everything by myself.  My husband has always respected my independence, and I love him for it.

But I am finding out that maybe my independence wasn’t the virtue I once thought it was.

See, that thing within myself that I had always tried to repress because I found it so repulsive—my fragility, my need—awakened something beautiful within me: fragility and need.

I’m learning to be fragile; I’m learning to need.  I’m learning to let him care for me, and it’s taking my breath away.

In the wake of my sickness, he’s been tender and gentle and attentive and supportive.  He watches over me with the quiet vigilance and loyalty of a German shepherd.  He drives me all over kingdom come without so much as a sigh of annoyance.  He holds me when I’m frustrated and he listens when I rant.  He’s been a perfect gentleman, and a perfect Eagle Scout, too.  True to Boy Scout Law, he is “trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.”  (Well, maybe not always all that clean, but he’s a farmer, so I think he gets a free pass on that one.)

But this is what those wedding vows are all about.  This is what it means to take someone for better or worse, in sickness and in health.  It’s what he has done for me: recognizing that fragility and need and meeting it with goodness and care.  And, as I am learning, too, it’s about letting that goodness and care happen.  It’s about receiving it, appreciating it, and returning it.

These storms have given my husband the chance to shelter me, to live out the vows that he made to me, and they have left me in breathless awe of his love for me.  I don’t think I fully appreciated the magnitude of his goodness until he turned its rays on me.

And that’s a pretty darn good rainbow.

Lessons from Plants, Redux

My foster son became rather depressed when his plant—a gift from his mother—began shedding a lot of its leaves.  The plant wasn’t dying, and it didn’t appear to be under any more stress than usual.  But still, it lost leaves. 

Several of them. 

Every day. 

“Are you watering it enough?” he asked me, fingering the remaining leaves with tender care.  I assured him that I was, that this loss was part of the growth process. 

But he was not convinced.  Instead, he seemed rather distressed by the losses that it suffered.  He almost seemed to grieve those fallen leaves.  He stood next to that pot, a vigilant sentinel, as though his presence might soothe away its stress.  But still, the leaves died and fell. 

Loss is, after all, part of the growth process.

I saw my doctor earlier this week and he told me that because of the type of epilepsy I have (partial, with a right temporal lobe onset) and four drug failures, the odds of controlling my seizures with medication alone are now a mere 15-25%.  That percentage jumps to 60-75% with brain surgery, which still terrifies me.  And I’m not sure those odds are high enough for me to sign myself up for a lobotomy. 

I applied for Social Security disability earlier this month.  I hated doing it.  It felt like admitting defeat.  But I am in no state to hold a job right now—my hold on consciousness is so feeble at times.  The government requested more information from me this week—my husband had to fill out a seizure witness form, and I had to explain the types of seizures I have (their duration, their frequency, their severity).  Filling out those forms, admitting that I had become incapacitated to this degree, felt like a loss, much like those leaves, dreams once so bright and vibrant and new themselves, that had shriveled on the vine and fallen to the ground. 

But my foster son, ever mindful of his plant, pointed out the tiny explosions of new growth on those same vines that had just shed those dead leaves, a thousand green fireworks spiraling into the air, more leaves than it had lost, full of promise and life.  He has suffered his own losses—more than I can comprehend—and those losses have allowed him room to expand and grow in ways and places he never dreamed.  He has grown so much—more than any of us ever thought possible.  He understands this natural cycle better than I ever could.  He has lost so much, but each loss has been a pruning.  It is good to see.  It brings me hope. 

Loss is part of the growth process.  It prepares the way for new growth, and I can feel the buds within me, daring to nudge through the loss and unfurl their blooms.  

The Mermaids at the End of the Driveway.

I’m so frustrated/pissed/sad/afraid right now.

I went nearly a year and a half without having a seizure, and then BOOM.

I had another seizure this week—a very unusual one.

I was hoping that wasn’t what it was, that it was just a brain fart or a daydream or a temporary lapse into insanity.  But I just got off the phone with my doctor, and he said it sounded very much like a complex partial seizure, which was exactly what I didn’t want to hear.  I was hoping he would indeed diagnose it as a brain fart or a daydream or even insanity.  But he didn’t.  Survey says: seizure.

When it happened, I was riding in the pickup with my husband, and we were holding hands and having a rather animated conversation about bodily functions when--

My brain.

Just.

Shut.

Down.

I don’t remember this happening, but according to hubby, I apparently started to wiggle my feet and itch my thumbs like crazy, and then I started babbling about how “the mermaids at the end of the driveway made me do it.”

Huh?

Well, if they did make me do it, if they were the ones who made my brain go haywire, who overtook my mind, who made my thumbs so freaking itchy and my words come out all wrong, then—well, I wish those damn mermaids would knock it off already and leave me the hell alone.

Days seizure-free: 2.

Miracles.

It is incredible how a near-death experience can throw the landscape of your life into sharp relief.

Suddenly, the things that seemed SOSOSO important simply aren’t (and probably never were all that important in the first place), and the things taken for granted, the things that seemed so ordinary and mundane and even boring are seen for what they truly are: the most precious things in the world.

But isn’t that always the way it goes?  Miracles have a way of changing your perspective.

I was the recipient of a miracle—there is simply no other explanation for it.  The circumstances were too coincidental to be mere coincidence (if that even makes sense—but I’ve found that miracles seldom do).

I had a seizure while I was driving 70 miles per hour, and I managed to not only survive it, but to do so without crashing my car—I somehow managed to get myself into the median and slam my foot on the brake and keep it there, all while I was unconscious.  And if that wasn’t miraculous enough, an ambulance was driving by at that exact moment, saw me, and called for backup, and my husband, who is a volunteer firefighter, just happened to hear a page for a vehicle “incident” (as it was termed) on the interstate and dropped everything he was doing to check it out, just in case it was me.  He got to the scene just as the police did.

I remember none of this.  I only remember waking up, super confused and covered in glass.  (I didn’t wreck my car, but because my foot was on the brake, they couldn’t open the car door, so they had to break my window to get me out.)  Eventually, my faculties returned to me, and I figured out what had happened.

My first emotion was terror: I was sitting in my car.  I knew I’d had a seizure, which meant I’d been driving while unconscious.  My second emotion was relief: I was alive. I hadn’t hurt anyone.  My husband was near.  The emotions that followed were a kaleidoscope: rage/devastation/despair/grief/frustration/acceptance/self-pity/annoyance, playing on a continuous loop.

I hate the way epilepsy renders me completely helpless.  I hate the way it destroys my sense of control over my life.  I hate being at the mercy of others during and following my episodes.  It’s frustrating.  It’s humiliating.

If I didn’t have epilepsy, I wouldn’t have needed that miracle.

But if I didn’t have epilepsy, I wouldn’t have gotten that miracle.

Miracles are bittersweet, aren’t they?

They are what we hope for.  They are deliverance.  They are grace and goodness and salvation itself.  But the fact that we even need them at all speaks to the dire nature of our circumstances.  We are so very fragile, and miracles remind us of that.

People don’t get miracles unless they need them.  That’s the whole point.

I guess I just needed one.