slash the 'stache (video)

This, in honor of David Axelrod's epic sacrifice in his effort to raise one million dollars—within one month—for CURE epilepsy research. They made their goal and his 'stache was slashed today on MSNBC's Morning Joe. As I watched a shining straight razor devour his forty-year-old lip rug I found myself curling my own upper lip down, I suppose in some act of solidarity.

In case David and Susan are mourning the loss of his moustache, I have included this humorous video. We can all learn something. There's still hope, David. Godspeed.

beautiful despite all the rest

Sometime within this last year while I was surfing Facebook I came across a sepia-toned portrait of a young woman, her downcast eyes highlighting thick, dark lashes, her forehead taped with EEG leads. Scripted across the top of the photo were the words, “My epilepsy makes me beautiful.” As I read the line my heart sunk and a storm of a thousand thoughts whirled in front of my eyes:

No it doesn’t! You are beautiful without epilepsy! Epilepsy messes you up! Epilepsy robs your health, drugs you out, fries your brain, risks your life, steals your memory, makes you fall, drags you down, limits your abilities, hurts your family, costs you money, deprives you freedoms!

And although I don’t have epilepsy—my eight-year-old son does—at the same time I tried to understand what she was saying. Perhaps she was trying to take back what epilepsy had stolen from her, trying to say that living with epilepsy had made her a stronger person. I have no doubt that it has. But to give epilepsy kudos, to somehow exalt it, to place it on a pedestal and praise it as some sort of positive entity, some beautiful characteristic, literally made me feel ill.

I immediately jumped on the phone and called my friend Susan. We exchanged horror stories of our drugged-up children going haywire because of the anticonvulsant medications—my son, at times, a spinning, flailing maniac; her daughter an enraged teenager tearing at her mother’s clothes—and we grieved. I mentioned my son had also been a zombie and how, if it weren't for all of the drugs, perhaps he'd be walking by himself, maybe even speaking. We talked about all of the “what ifs” and how things might've turned out differently if only for the epilepsy. I told her about the photo I’d seen online and how it made me angry and sad at the same time. I told her how I thought it might've been a teenager’s effort to be seen as “same” instead of “other,” to not be society’s outcast, to not be feared, marginalized, shamed. It was her effort perhaps, as it is for so many, to diffuse the power of epilepsy, to show that people with epilepsy can lead normal lives just like the rest of us.

But for so many millions worldwide, whose seizures are not controlled with medications—like my Calvin—or whose seizures are controlled but only with use of a debilitating amount of medication, life is anything but normal. It is painful and blurry and stifling and controlling and nauseating and chronic and scary and limiting and hopeless and sickening and hurtful and consuming and nagging and dreadful and unpredictable and worrisome and lonely and ... incurable. One thing epilepsy is not is beautiful, nor does it make one beautiful. Epilepsy is nothing but vile.

Instead, I would argue that the ones with epilepsy are already beautiful, that the souls who suffer epilepsy make themselves beautiful despite all the rest.

two ships passing

It has become clear to me during the last few conversations with my mother that she no longer understands what a telephone is used for (we have to explain it to her) and, though she is familiar with dogs, she doesn’t know what a cat is. Words continue to escape her and yet—thankfully—she doesn't appear to be too bothered and, for now, maintains the capacity to understand quips and jokes.

I imagine Mom and Calvin like two ships passing in the night, trading places, though Calvin will never have the intellect that his grandmother once enjoyed. At this point—my mom eighty-three, my son eight—they both need assistance walking, they both wear diapers, they both need supervision while eating and bathing, they both require spotting while going up and down stairs and, though Calvin has yet to utter his first word, my mother is losing her vocabulary daily.

I am reminded of Martin Amis’ novel, Times Arrow, in which the main character's life goes backwards. Like Benjamin Button, he gets younger and younger with time until becoming a mere infant, his life eventually snuffed out in his mother's womb. Just like Mom, I think. Some day, likely in the not-too-distant future, like a baby she will no longer have a memory, then she will simply disappear into the womb of mother earth.

But fortunately, my mom will live on in me and in Calvin. We take her with us—put her in our pocket, to use a friend’s phrase—in the things that come to us naturally by way of our shared biology: vivaciousness, lightheartedness, sense of humor, optimism, kindness, affection, sprightliness and warmth. I clearly see all of these qualities in my boy, though he has no spoken language, and I am amazed and delighted at how much he takes after my mother. I’ll be forever graced with these two lovely ships passing in the night, even when they disappear into the fog.

Mom and Calvin, 2006

cyanosis

Cyanosis: a blueish discoloration of the skin (here, the fingers, toes and lips) resulting from poor circulation or inadequate oxygenation of the blood.

Cyanosis: what happens when my son Calvin doesn't breathe for over a minute during grand mal convulsive seizures that last upwards of three minutes.

cyanosis

sonogram

The technician squirted a blob of warm ice-blue gel on the end of her wand, which, like most of the equipment and furniture in the room, glared a sickly grey. She wore thin sterile gloves that swooshed and crackled like powdery plastic as she navigated the wand over my belly, grasping it as awkwardly as a kid wielding a gigantic marker. Michael held my hand.

The fuzzy black and white images on the monitor looked surreal: a ghost-baby appearing inside some magic mirror illuminating the darkened room. There he was, our son, a seemingly fully formed, 32-week skeleton-of-a-baby cradled in my 40-year old womb, a tiny diver in mid-tuck. The grainy window-wiper swath morphed amoeba-esque into a dark glittering mass like a moonless night sky. Then, my child reappeared, his limbs connecting points of light like stars in some strange constellation. I thought back to his eighteen-week sonogram, the one where his limbs moved like little waterlogged sticks in a pond. One leg kicked out then drifted back down to rest on the soft oyster of my uterus. There's my little pearl, I’d thought. Though Calvin moved very little during that sonogram, when he did his gestures had the eerie quality of a marionette. I remember thinking how odd he looked—practically fake—like one of those lazy cutout cardboard puppets fixed with loose grommet joints dancing on the end of a thin dowel.

I recall being mesmerized by my pregnant friends’ bellies, their babies visibly shifting under tight sweaters like aliens, little feet skating around, sometimes kicking with such vigor I feared they’d punch right through. Perhaps it’s just too early, I’d think, trying to justify why my baby didn’t do those things. My husband never once felt Calvin moving inside me; his subtle rolling always abated before Michael had time to lay his palm on my belly. At five months I was barely showing, could still wear my jeans, just unsnapped at the waist. I tried my best to deflect my friends’ comments about how small I was, though I couldn’t conceal my nervous blush. Did they know something I didn’t know? A few remarked as though they were somehow jealous of my small baby bump, which I thought was strange and perhaps some perverse product of society’s distorted image of beauty. I wondered if others were worried for me.

As the sonogram progressed I kept my eyes fixed on the peppery screen in a state of trance as though I were watching a poltergeist. Little did I know that Michael was eyeing the technician’s sober, wide-eyed gaze. She remained unusually silent throughout the entire exam, then quietly exited the room to show the films to the doctor.

A few minutes later in walked a somber form. She was tall and dressed in a full-length black knit dress and high-heeled boots with a stethoscope slung around her neck. Her hair stood short, gelled and spiky, thick black mascara caked her baggy eyes. She looked to me as if she’d stepped right out of a Tim Burton film. With no show of empathy, like some steely robot, she shared with us the grim news in a low, monotone voice, “Your baby’s brain’s lateral ventricles are enlarged. This is something you need to worry about. It could affect I.Q. Come back in four weeks.” I wanted to punch her, take her down and knock the wind out of her, make her struggle to breathe like she’d just done to me. But, frozen by the news, I couldn’t move, couldn’t conjure any words to pass my thickening throat. My heart imploded, went up in a puff of smoke. The fumes stung my sinuses and reddened my eyes, tears spilled into my lap as I hugged my gut with one hand, the other in Michael’s tight grasp. What now? I thought, what now?

unchanged

My hours blend into days, the days into weeks, weeks into years, and though the time passes, little changes for our eight-year-old boy. It’s as if he were standing alone—if he could—in the center of a time-lapse landscape video, clouds streaking by like ghosts, days and nights flickering past in blinks of time as the sun and moon see-saw in the sky, as long shadows creep across the landscape before receding into the night. The seasons pass; autumn leaves die and fall to the ground, snow smothers everything then spring begins to emerge in a thickening of green and bloom. But amongst all this evolution our Calvin remains mostly unchanged, like a static pillar of rock in the center of the beautiful scene, time flitting busily by him as he stands fast, the world seemingly unaware of his presence if not for his shivering form.

But I am aware ... I know. My boy is changing. The top of his auburn head reaches just about to my solar plexis. His face thins out, his teeth grow in, his limbs lengthen into smooth slender straps of muscle and skin, not much fat save tiny morsels smaller than a mandarin orange slice just at the back of his knees. Sadly, Calvin’s physical changes underscore his lack of cognitive and developmental changes. He still cannot walk without assist. He cannot utter words. His expressive and receptive communication abilities are practically non-existent. He can reach for us if we are near, he can try for his sippy cup if it is next to him on a table, he can sit up and kneel in his bed and pound the safety panel to beckon us, he can kiss our faces if our heads are touching.

But Calvin still crawls around the house like a little baby—coos like one too—drools as much if not more than a teething infant. He plays with his toes on the changing table, he puts everything into his mouth, he still struggles against gravity in negotiating the stairs, but he’s getting better. And although we have seen some progress I can count the times that the tulips have come up then withered—come up again then withered—yet Calvin is still doing some of the same things he’s done since he was two, with little to no improvement.

And I know deep down in my gut, where it's dark—sometimes heavy, sometimes hollow—that this virtual plateau in Calvin’s development, the one that keeps him at some twisted place between infant and toddler, is primarily—if not entirely—because of the seizures, the drugs and their side effects.

But just as the Grand Canyon’s impressive erosion secretly continues on for millenniums, just as its river snakes and meanders, slowly carving its own story into the stony facade while the clouds gather and shower infinite rains that sculpt and smooth the plateau—the sun and moon rising and setting over its face—just as these changes are imperceptible to the naked eye, so remains Calvin; mostly unchanged, though changing.

But our boy is enduringly beautiful with a capacity for love bigger than the broadest canyon, the widest river, the deepest, black-green sea or the expanse of cloudless sky that holds forever in its infinite palm.

Version originally published 12.29.11.

photo by Michael Kolster

what if

What if religion was each other?
If our practice was our life?
If prayer was our words?

What if the temple was the earth?
If forests were our church?
If holy water—the rivers, lakes and oceans?
What if meditation was our relationships?
If the teacher was life?
If wisdom was self knowledge?
If love was the center of our being

—Ganga White, founder of the White Lotus Foundation

photo by Michael Kolster