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Did you know that Prince (or The Artist Formerly Known as Prince, or that symbol thingy he tried for awhile, or whatever he’s calling himself these days) was born epileptic? Yes, the Purple One, that great Purple Yoda from Minnesota himself, used to struggle with seizures as a child. He was fortunate enough to outgrow the disease, but still, he suffered.And how appropriate that he associates himself with purple, the color of royalty, the color associated with epilepsy. Today is Epilepsy Awareness Day, so I decided to wear purple. It’s a color I don’t wear often, but perhaps I should start—epilepsy is more common than you might think: as many as 1 in 26 people will struggle with seizures at some point in their lifetime. (And feel free to fact-check that one—it’s straight from the Epilepsy Foundation.) 1 in 26. You’d be rich in Vegas with those odds. Even though I had a two-hour-long seizure as a toddler, and I took medication for a few years afterwards, I never thought I’d be that 1 in 26. I thought I had my brain under control, that it was an isolated incident. But I was that 1 in 26. Think about that for a moment: that’s pretty much one kid in every classroom in America. So this is something that people need to know about. There are a lot of weird misconceptions about seizures: epilepsy has been associated with the cycles of the moon, with prophecy, and excessive masturbation. (I wish I were kidding.) It was even believed by some to be divine, a direct link to God—like Harry transmitting messages to and from The Big Giant Head on Third Rock from the Sun back in the 90’s. The Greeks called it a sacred disease, and it has been called the genius disease. It has also been called witchcraft, criminal insanity, a curse, and a contagion, and its stigma is so profound that epileptics were banned from marrying in the United Kingdom until the 1970’s, and in India and China it is still considered valid grounds to deny marriage rights. (I wish I were kidding about that, too.)It’s not contagious, but it is stress-aggravated. And these misconceptions are both stressful and aggravating. (And frustrating, come to think of it—at least, for this epileptic…)Epilepsy is a seizure disorder—epileptics are prone to recurrent, unprovoked seizures. A seizure can be so many different things: most people think of the type where the body convulses. That’s one type. But there are others, too. I’ve had convulsive seizures, but lately, I’ve been having complex partial seizures, which basically means that the seizure starts in only a part of my brain (that’s what’s partial about it), and I usually mumble something and do some sort of action to accompany the gibberish. (Marching is one of my favorites, and I also like to take off clothing and twiddle my thumbs.) Yeah, I’m exhausted and pretty unaware after they happen, and they’re a pain in the butt, but I think, more than anything else, seizures are scary. I think they are scarier for those witnessing them than those who have them. So educate yourself. Learn about this disease so that it doesn’t scare you. If you see someone having a seizure, protect them from hurting themselves (but don’t restrain them or put anything in their mouth), and pay attention to how long it lasts—if it is longer than five minutes, brain damage can occur, so be sure to call for help.And go wear some purple—just like Prince.
I put some effort into my appearance yesterday. I actually put on a dress (which is like a twice-a-year thing for me). I wore a bracelet (also a biannual phenomenon) and shaved my legs (I won’t comment on the frequency of that occurrence). It was a dress I actually loved, too—I felt good in it. And the bracelet was pretty. I used a new razor on my legs, too, which is one of the best feelings ever. I styled my hair using actual hair products. I put on some makeup. I wore new shoes. I spritzed on my favorite perfume. What was the occasion?There wasn’t one. I was just leaving my house.My sister-in-law took me to run some errands. We went to the grocery store and a gas station. We stopped by another store to make a return. We did eat sushi—that was special, but I was still the only person in the restaurant wearing a dress. I have a closet full of clothes that I don’t love, that don’t quite fit right. I have piles of shirts that are too short or too baggy or too tight. I have jeans that gap in the back or make my legs look like cased sausages. I have shoes that hurt and sweaters that have armpits full of pills and moth holes. Time and time again, I buy things that I do not completely love.I have clothes that I do love, like that dress. And jeans that fit just right. And sweaters that feel like a hug. And shirts that feel like custom couture. And even though I never wear them, I love these things—or, rather, I love the idea of them. They honestly feel like costumes, and I often feel like a child playing dress-up when I dare to wear them. That wardrobe belongs to someone I have not yet become, or someone I only occasionally pretend to be. So I keep buying stuff that I don’t love, stuff that doesn’t even fit properly, because I cannot wear a lie. I think I’ve been waiting for myself to become someone worthy of those beautiful things I never wear—some kind of self-confident professional who looks capable and ready for anything, and because I do not feel self-confident or professional or capable, I wear things that reflect that belief. It feels like sacrilege to wear my loveliest things, like perpetrating a lie.It recently occurred to me that I cannot wait for myself to magically turn into this confident professional I always thought I’d effortlessly become after college—especially given my current circumstances. (It’s hard to be professional when you’re unemployed.) It’s a complete waste to buy and wear things that I don’t love and to let the things that I do love wilt in the back of my closet. So this year, as I spring clean, I am getting rid of all that I do not love—and not just my ill-fitting clothes. It is time to abandon those ideas that I am unworthy of beauty because I have not accomplished or become what I thought I would. It is time for me to embrace the wardrobe of that woman I want to be—to actually wear my lovely things and only buy things that I love, things that bolster my confidence and my self-worth, things that make me feel capable and vibrant. Because life is a special enough occasion to dress up.
When my brother graduated from high school in 2009, I took him to see Rob Bell speak. Bell was promoting his book Drops Like Stars, which is subtitled “A Few Thoughts on Creativity and Suffering.” At the time, it was only the creativity part that interested me. I wasn’t so keen on hearing him talk about suffering. I was quite certain creativity could exist without it.
But it was Rob Bell, so I was still excited.
Everyone in the audience was given a note card and a bar of soap upon entering. Weird. But fun and creative, too, right? I assumed we’d be drawing something on the note card (Fun! I love to draw!), make a huge mess, and use the soap to clean up afterwards.
Yeah, that didn’t happen.
Rob Bell spoke mainly about how suffering can be an excellent catalyst for art, because it connects us to other people by forcing us to understand their suffering through our own. He demonstrated this with that note card. He told us about a friend who had broken his arm and how he didn’t really understand what that friend had been through until he broke his own arm and suffered the same sorts of inconveniences.
So he asked us to write “I know how you feel” on our note card using our non-dominant hand. And since we all had done it, had all suffered the same inconvenience, he had us trade note cards with the person next to us as an exercise in empathy. (I ended up with my sister’s. I still have it.)
I was a bit disappointed. I had been expecting a more “creative” exercise, but I guess it was a way to pass the time. Whatever.
Intermission happened, and I could only stare at that bar of soap, wondering what sort of “creative” exercise we’d be asked to do. Wash each other’s feet? Take a bite out of it as a reminder to watch our words? Throw it across the auditorium? Send it to troops in Afghanistan or children in Africa? Give it to the homeless?
I had no idea.
When Bell took the stage one more, he began to talk more about suffering. It was a rather uncomfortable topic. I wanted to hear about art. I had come to hear about creativity, not suffering, and so far, I only knew about his friend with a broken arm and that I could write reasonably well with my left hand. I wanted to hear him speak about art, and all he did was talk about suffering.
And then it got even worse: he began to talk about the soap.
He told us to take our bars of soap and carve them. Not then and there, but sometime, when we were alone, to carve our bars of soap, to strip away the excess, to get rid of the nonessential, to reveal what was hidden within.
To make it into something new and beautiful.
He talked about suffering as a sort of “stripping away” of the unnecessary. It is painful, he said, but suffering reveals us. It makes us naked. It strips us of pretense and reveals who we truly are. He talked about how suffering causes us to let go of everything except the essential, and when all excess is eliminated, the beauty is revealed. It brings to mind that Michelangelo quote: “I saw an angel in the marble and carved until I set him free.”
He then showed us photographs of hundreds of soap carvings that people had made and sent him after attending his seminar. The photographs were cool, but...was suffering really necessary for art? I doubted that I really had to suffer in order to shave my soap into the shape of a flower. Even if I cut my finger in the process. The suffering seemed rather unnecessary.
The talk about suffering made me uncomfortable. It almost seemed to imply that suffering produced and inspired and drove creativity, and I was perfectly content to create without the baggage of suffering. I wanted my life to be as easy and as comfortable as possible. I couldn’t see any non-essentials in my life. It was all part of me, and I didn’t want to let go of any part of it.
I see now that I just hadn’t suffered enough at the time to truly appreciate what Rob Bell was trying to show us with that soap. The exercise seemed cute and crafty and like something a middle school art teacher might try, but I’ll admit that I felt a little cheated when I left the theater with an unused bar of soap and a used note card in my pocket. I thought I was going to be inspired by him.
Instead, I was just confused.
So I put the soap in my bathroom cabinet, and there it stayed. For six years.
Until yesterday.
I don’t see my brother very often anymore—our lives are just on different trajectories—so when he called and asked to visit yesterday, I was elated. We both love to make things, so when he asked what we should spend the day doing, I remembered that soap, decided that I had finally suffered enough to understand what Rob Bell was trying to say (and that my brother had, too), so…we carved.
I remembered those pictures Rob Bell had shown us. People had revealed and discovered beautiful things within those humble bricks of soap. And that reveal could only happen through the act of cutting into that soap, through taking away what had started as a part of the whole.
So I found a paring knife, unwrapped the bar, and began to carve, curling away ribbons and shreds. I had no idea what it was going to be until it was done—and then it was obvious.
It was a key.
Of course.
My brother ended up with a sliver of moon, which I declared was a new moon. His bar was brittle and broke several times, so he lost much more of his original product than I had, but his finished product was beautiful nonetheless, and nothing like what either of us had anticipated it would be, or perhaps even what he had intended for it to be.
Because, as I am learning, our intentions don’t really matter very much. Despite our best efforts to make our lives to exactly as we want them to and exactly as we think they should, things break. And disappointment happens. And the unexpected. And detours. And we are forced to endure this stripping away—it really is for our good—so that we can know what it truly is that we are meant to be.
I used to be really, really afraid of looking stupid in front of people. I could think of nothing worse. I’m a complete control freak, so I wanted to as appear smart and capable and brilliant and effortless and perfect as I could manage, and it takes a lot of time and energy to maintain that façade. I thought I was doing a pretty convincing job of it. I think I even had myself fooled for a while.
One thing about epilepsy that has been simultaneously freeing and frustrating is that I am being forced to not be in control. I am being forced to face this fear of looking stupid in front of others head-on because I have no control over my seizures. They just happen, and…who knows what I’ll do. I sure don’t. Often times I’m embarrassed when I get the report from the witnesses as to what I’ve done. Or when I view the videos my husband takes on his phone to show my doctor. I hate watching them, but at the same time, they help me to see that life continues in spite of these lapses, that people don’t give up on you when you fail (or when your brain does), that my “self” has not diminished, that I am not destroyed.
This disease is making me braver.
It has granted me a “license to idiot.”
It has made me much less afraid of what people will think of me, because I feel like I’ve already survived the thing I feared the most. (Being found in a supply closet without pants at work was pretty humiliating, even if the staff did handle it gently.) And now, looking back on it, it seems like kind of a foolish fear to begin with. It’s hard to live, to take risks and to try new things and be courageous when you are terrified of looking like an idiot.
Well, I have a license to idiot now.
And it is changing how I see myself. I am starting to believe that failures are merely setbacks, not life sentences like I had so long believed. Humiliation is not as bad as I’d thought—it has certainly made me more compassionate. And I have survived many humiliations since my diagnosis, and they have all given me the courage to get up and try again.
My goal this year is to pursue publication of a book. It has been written for a couple years, but I did not try sooner because I was terrified. I didn’t want to face the rejection of an agent or publisher. I didn’t want a bad review. I didn’t want people to judge me for what I had written because it was offensive (although honest). So I was just holding on to it, holding on to my dream, smothering it against my chest until it died of suffocation. Dreams need air and freedom.
But now, with that license to idiot, with the knowledge that failure is merely evidence of trying, it’s like the universe has given me permission and even its blessing to fail. It has thickened my skin and given me the courage to try, to push my dreams from their nest and force them to take flight.
I will embrace my idiocy and set those dreams free.
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.
I hate socks.
I have always hated socks. Always. As a child, I peeled them off the second I took off my shoes. And I still do, on the rare occasion that I even bother to wear socks. I hate how confining they are, how restricting. They just make my wide-width shoes even tighter (my feet are about as wide as they are long—pretty much square blocks), and I feel like my toes are gonna bust out the sides.
I hate balloons for the same reason. They’re squeaky and loud, they contain and confine, and they have the potential to burst. I hate that they might pop at any moment—you never know when they might blow. They always sneak up and surprise you. I remember the ushers at our wedding thought they were being kind by filling our getaway vehicle (hubby’s grandma’s sweet Jaguar) with balloons. Two popped on the ride to the reception hall. I nearly hyperventilated.
And meat that’s been stuffed into a tube is revolting to me. I think hot dogs and bratwursts and sausages are vile. I hate casings. Again, with the confining—I hate that restriction. (And I hate meat that has been so altered that it no longer looks like meat, but that’s another story for another time.)
I hate things that feel so overstuffed that they might pop.
And these strange pet peeves/phobias/what-have-you’s never made sense to me until recently: I’m pretty sure that they freak me out because it’s exactly what my brain feels like right before it fails me: so full it’s got to burst.
In spite of this brand-new, fancy, super-expensive drug I’m on ($7.00 a day!), I’m still having seizures. I had one on Tuesday, and it was a nasty one. And I had a migraine before and after it. It hasn’t been a good week for my brain.
But I feel like there is this pressure that just buildsandbuildsandBUILDSANDBUILDS inside of my head, and it comes out as a seizure.
The previous drug released this pressure in small leaks—I had frequent, minor seizures, like when you let air leak slowly from an untied balloon. (Ugh, that awful squelching noise.) The act never empties the balloon—it just takes some of the pressure off.
This new drug (and the one prior to it) keeps the lid on for awhile longer—I went nearly two whole weeks without one. But when I blow, the pressure that has built up is substantially greater, so the seizure that follows is, too. This kind is pretty much the equivalent of a popped balloon. Or a holey sock. Or a hot dog that busted out of its casing. (Shudder. I can think of few things more disgusting.)
So, seizures feel like socks and balloons and hot dogs.
All things that I hate.
Last night, due to my early release from the hospital, I was able to attend a cabaret in LaCrosse that my brother completely envisioned from nothing and created: I’m talking promoted/produced/directed/choreographed/starred. He procured funding from patrons. He asked old college friends to come back and star, and they turned out in full force—trekking across country to join in. He asked my dad and sister to play guitar and drums, and another childhood friend to lend her talents on the keyboard, and I got to sit in the front row and watch this magic come together. It was called Turning Point. I watched him take these disparate songs and people and ideas and meld them into a cohesive show. There wasn’t a “plot”—just songs from different musicals performed in rapid-fire succession—but the intention and purpose was clear all the same. This was a show with a message. And it spoke to me.I heard it almost subliminally, through waves of emotion and buzzes of energy. The spirit of the show was raw and beautiful, like a fresh wound soothed by balm. That spirit infused everything, too—it was obvious in the love the performers shared for each other, for their craft, for these songs. I felt like I was watching something so intimate, so personal, that I was almost embarrassed—like I had walked in on something I wasn’t meant to see. And yet…there it was: laid bare on a stage, that display of emotion, ugly yet pure, to let those who watched it know that they are not alone. Art is born of suffering. It must be so to connect. Suffering does connect us—I learned that this past year.The purpose of art is to let others know that they are not alone. It gives hope. It comforts. It uncovers darkness and shines its light upon it. I hope to someday create something that beautiful, with a message so powerful that it radiates and suffuses the darkness in hints and suggestions, through tiny cracks, much like sunlight. Let the sunshine in.
