friday faves - toward the sun

I remember hearing a story about a father’s last words to his four-year-old daughter. Sadly, those words were heard from an answering machine rather than face to face. He was calling on his cell phone from United flight 93 on September 11th, 2001. He told her that he’d be watching over her every day of her life.

Immediately, I felt the bitter twinge of that family’s loss, the loss of that little girl who’d never again see her father’s kind face. He wouldn’t be there to wrap his arms around her when she fell off of her bike and scraped her knee. Never again would he tuck her into bed, read her a story, brush the hair back from her face lovingly and kiss her goodnight. He wouldn’t be there to help with her homework, show her how to kick a soccer ball, teach her how to drive, help move her into her first apartment or embrace her at her wedding.

When it became more and more evident that Calvin’s development was severely impaired—when he continued to miss important milestones like learning how to crawl or even having the strength and coordination to hold  his head up—and then when he started having seizures, I found myself tumbling into a seemingly bottomless well of despair. It was dark and cold down there, not much light save the glow off of close, dank walls. I felt I had lost what I never even had—a healthy child—a chance at experiencing the joys of parenthood like the ridiculously happy images you see in glossy pages of magazines scattered in the pediatrician’s office: the glowing, full-term melon-ripe mothers, the chubby dimpled babies, barefoot in diapers pulling colorful wooden trains at the end of a cord, the Barbie and Ken parents with kids perched on their shoulders, faces smiling toward the sun, shadows cast behind them.

Instead, I lived within a shadow that stretched as far as my eyes could see, like the scorched path of a fallen plane. I was pacing the aisles of shiny infants' toys for my four year old who still might not know how to use them, buying box after box of baby wipes, researching anticonvulsant drugs, going to the geneticist, the gastroenterologist, the neurologist, the emergency room instead of the playground, the zoo, the mother and child library music group.

Sometimes I wonder if my experience of loss was—is—anything at all like the little girl whose father died. But we're likely similar only in the way she’ll never again hear her father say, “I love you,” and I may never hear the same uttered from my own son's lips. The profound difference is that I have Calvin right here beside me to love and hug and kiss—at least for now. And, I am fortunate, for it was Calvin—his constant happy presence—who helped me climb out of my deep dark hole. I meditate on that while keeping that little girl, and others who have lost loved ones, in mind. I can only hope that her father’s last words to her, the infinite repetition of them, help to keep her on high ground, her face always smiling toward the sun.

Originally published 09.11.11.

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June 2005

skinny little waterboy

Calvin, my skinny little waterboy (skinny and hyper due in great part to three powerful antiepileptic drugs) enjoys a cloudy-day "swim" in his baby pool.

silent battle

Written by Julianna

There are many reasons that people become passionate about what they study. For most people, the reason isn’t the five centimeter chunk of their brain that was removed. Yes, I am missing the majority of my right temporal lobe and there is no way you would ever know. I make good grades at a so-called “top-tier college” and I am unburdened by social or learning differences. Therefore, a substantive part of my journey through epilepsy has been unseen and unheard.

When I was sixteen months old, my mom stood awed and helpless as her first-born’s lips turned blue. I proceeded to shake all the way to the hospital as my dad sped through traffic lights and my mom cried holding her convulsing baby. No matter the type of toxin the ER doctors shot into my tiny veins, I continued to seize in what was later qualified as status epilepticus, an unstoppable seizure lasting more than thirty minutes. As few people know, status epilepticus and other seizure-related causes kill 50,000 people a year in the United States. Therefore, my silent battle acted somewhat as a metaphor for the silent battle that is epilepsy on a broader scale.

After that, I grew up without so much as a second thought about epilepsy besides the morning ritual of feeding all my bears their phenobarbital before taking the thick red liquid myself. I continued to have seizures six or eight times a month—daytime hallucinations that, though I am only twenty, I am sure will be the scariest moments of my life. I had seizures during softball games, playing the violin, white water rafting, singing, I had seizures on three continents! But these episodes looked like I was “spacing out”; very few people—even pediatricians and highly educated parents—are aware that seizures can look like merely a blank stare but can feel like another hellacious world.

Finally, I was hit head-on with a softball during one of these spells, I was referred to a neurologist, who declared that I had “a seizure disorder” in a way that made it sound like a death sentence. He informed me matter-of-factly about all the things “I wouldn’t be able to do.” Swimming was too dangerous; if I flew, the plane would have to land in the event that I had a seizure (I had already had upwards of ten seizures on planes, thank you very much); I couldn’t ride my bike or my unicycle alone, etc. When I recount this list to my current neurologist, who has changed my perspective on the world, she simply laughs. Isn’t it incredible that even neurologists can be so prejudiced? None of these restrictions were necessary given that I bike with a helmet and swim with someone nearby.

Epilepsy has caused me serious pain over the years, and that will never diminish. However, as I hinted in the opening of this post, there have been some serious silver linings. I am passionate about studying neuroscience, in part because I experienced the uncontrolled action potentials of the neurons firing in my right temporal lobe. Epilepsy also informs (to a lesser but still substantial extent) my study of sociology, my other major. Being disabled is my only experience of being a minority, and I have certainly been pummeled by deeply stigmatized comments about seizures, enough content for another post. I was recently inspired by a philosopher who wrote that it is usually the brightest minds rather than the minds that have problems that heal the disabilities of the brain; I question why those two categories have to be mutually exclusive in my work on neuroscience research every day. I will spend my life fighting for a cure for epilepsy, but until the public knows the immense pain that epilepsy causes, we will be unable to obtain this goal. Thank you for educating yourselves and being a part of this fight.

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doing what's right

Never let your sense of morals get in the way of doing what's right.
 

—Isaac Asimov

Isaac Asimov

in the bedroom

At times it smells faintly of urine, or of feces in the seconds after tossing a tightly wound diaper into the small garbage can. At others it's talc, when I've crop dusted the blue area rug with absorbent fountains of powder squeezed from a white plastic bottle. It’s somewhat small and, except for the fact that it has its own closet (albeit without a door) it barely passes as a bedroom since Michael and I must pass through it to get to ours. In the middle of the night when I'm up repositioning Calvin, at times I can hear the faint scratching of some insidious animal rummaging around in the space under the eve that hangs over his bed. It’s a disturbing sound, not only for the knowledge that vermin are lurking mere inches away, but because I sometimes mistake their scraping for the sounds of Calvin’s nocturnal seizures.

On a built-in bookcase that hangs between those eves stands a group of framed black and white photos of Calvin’s relatives, none of whom he’ll ever know existed: my dad, my mom, my great aunt, my grandmother and grandfather and one of me with my dad when I was about two. In the photo capturing my mother as a beautiful co-ed, she peers through a clean crack in the glass. Dust grows on the photos like moss on a shingle. There are no books—most having found new homes on other kids' shelves since Calvin can't sit still to page through even the shortest of stories because the seizure drugs make him hyper. In a frozen tailspin, a balsa wood airplane that Calvin will never play with, leans against the photo of my mother. Above it, slouching on top of the bookcase are some forgotten stuffed animals given to Calvin when he was a tot. He doesn’t appreciate plush, at least not yet, so we’ve regifted an arc's worth over the years. I’ve kept the powder-blue teddy bear that Calvin got from my mother when he was in the NICU—the stitches in my belly still tender and numb—and the green Ugly Doll, my favorite odd body—a misfit—but adorable, just like my boy.

Calvin’s massive SleepSafe bed, complete with memory-foam mattress, head and foot articulation and safety panels, takes up much of the space. We’ve tented it with an old hammock suspended from a hook screwed into the bookcase. It stretches over the stocky bedposts, then is anchored by two ropes looping over the metal locks on each outside caster so that Calvin can’t fall out. Getting him in and out requires doing and undoing the apparatus each time, plus raising and lowering, locking and unlocking the panel. I’ve placed a little wooden footstool next to the bed so at night I can unloop one side—without lowering the panel—and reach in under the netting to give Calvin water or to move him. The safety panel is nicely padded, a job done by our friend, Joe, who makes custom boat cushions for a living. The rest of the bed is covered in thick layers of blankets and quilts with an overstuffed pillow at one end to buffer head butts or falls. Calvin seems to like his bed. It’s his safe place—his man cave—where he can move around and bite his plastic football and play with his feet to his heart's content without hurting himself.

When it comes to the changing table, it’s clear he’s outgrown it. Ironically, it’s a stainless steel medical instrument cart that I picked up for too much money when I lived in San Francisco and used for serving drinks at parties. The top of it is layered with about five or six baby blankets he received during stints in the pediatric intensive care unit.  The shelf below is littered with bags of diapers and diaper pads, boxes of acetaminophen suppositories, tubes of steroid creams, triple antibiotic and vials of other ointments. Curled up somewhere under everything is a cheap-ass stethoscope and a cheap-ass oxygen saturation monitor which I think I’ve tried once—unsuccessfully—on Calvin. There’s an old plastic baby-wipe box containing various sundries such as rectal thermometers, K-Y Jelly, more suppositories and ointments. Stuffed under the changing table next to a mega box of baby wipes rests a crumpled paper bag full of pediatric urine collection bags, sterile cups, plastic biohazard baggies, nitrile gloves and iodine swabs. It's a veritable nurses' station, if not for the dust bunnies that abound.

Calvin’s dresser is crammed with gobs of great finds from the Salvation Army—GAP, Old Navy, Ralph Lauren, Oshkosh, Hanna Anderson—and a few hand-me-downs that friends have give to him. I’ve been told he’s the best-dressed kid in his class—not fancy, just cool—one small way I can help him assimilate with his peers. On top of the dresser amongst his morning thyroid medication and other sundries emerges a compact stereo in which we play the same Baby Mozart CD he's been listening to every night for years. On top of that I keep a mini flashlight at hand to peer in on Calvin when I hear him rustling in the dark of the night.

He's in his cozy bedroom right now, taking a morning nap. Lately, the epilepsy drugs make him sleepy after breakfast. He's all curled up at the end, clasping his orange plastic football to his lips. Makes me want to crawl right in with him and dream of him as a healthy boy in a sweet smelling room full of books and Legos, crayons and coloring books and a well-loved cigar box holding coins, rocks, marbles, seaglass and shells from the kind of summer spree I used to have as a child but one that Calvin will probably never get to enjoy.

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little big boy

As the air begins to cool and the sun hangs a little lower in the sky with each passing day, I am reminded of Augusts gone by. Calvin has had Augusts with seizures nearly every day. Last year he was having one or two every week: the big-bad-convulsive-not-breathing-for-over-a-minute kind. As I sit here listening to the cicadas' buzz and read through past posts, I think to myself, I'm so glad it's now and not then:

August 9, 2011

Yesterday was another hot muggy one but Calvin was doing pretty well considering I’d been suspecting a seizure since the day before. I had tried giving him a prophylactic increase of one of his drugs again in an effort to dodge what seems more and more to be the inevitable.

Just after lunch as I was holding Calvin’s hands I noticed that they seemed warm. I pressed my lips to his forehead, which felt the same. Calvin was running a low-grade fever. We gave him some acetaminophen before he went down for his nap and by the time he woke up his temp was back to normal.

I figured it’d be a good thing for Calvin to lay low and relax—not do the perpetual marching around he usually does all day long—so with Calvin loaded in the stroller we took Rudy for a walk just to keep cool. It had rained earlier so the breeze coming off of the dripping trees felt refreshing.

We strolled through the campus quad, crossed traffic then glided down the hill to Cote’s ice cream shack. Above us heavy dark clouds had begun to form. I ordered a scoop of pistachio on a sugar cone and a scoop of vanilla in a cup for Rudy—that one is always free. The rain began to fall sprinkling on Calvin’s bare legs and feet. He giggled with delight. It started coming down hard so we skittered across the street to a wooden bench nestled against the side of a shop and sheltered by its jutting roof. There we were safe and dry. Michael pulled up in the car to meet us and ate some of my ice cream cone then Rudy got the tip. We lingered roadside chewing the fat and taking turns hugging Calvin, still secured in his stroller but fidgeting some, though relishing attention from his daddy.

Just as we were about to leave a group of elderly folk walked past. The last one was a slightly stooped man with thick waves of pure white covering his head and piercing blue eyes as vivid as his turquoise polo shirt. He must have been a very dashing young man in his day, I thought, his features kind and striking. I wanted to touch his shoulder.

“Now there’s a handsome fellow,” the man said, pointing to Calvin. 

“Good thing he looks like me,” I said, smiling. 

“I can see you’re his mother,” he grinned, then leaned in closer to my boy,  “I’ve had my eye on him.”

I figured he meant he’d been watching Calvin from the car that he and his friends had just piled out of. The gentle man continued, “I’ve met lots of kids like—” and he cut himself short, changed direction, “He’s a big boy ... a little big boy.” I had an idea he was familiar with kids like Calvin. “Yes he is a little big boy,” I said as I turned to Michael in fond agreement only to see his eyes redden and wet like mine. “Yes he is.”

As the man and his friends crossed the street to get ice cream I watched. He limped up onto the sidewalk dragging one foot behind, kind of walking on its side. I said goodbye as we passed but he didn’t hear me, so without pause we kept on heading for home.

Later, after dinner and a second day of increased meds, Michael took Calvin out for a quick walk  around the house. The evening was gorgeous. I sat down at my laptop briefly writing a few notes about the day before joining them. Then from somewhere in the yard Michael yelled for me. I jumped up, knowing it meant Calvin was having a seizure out there. “Where are you?” I shouted, “where are you?” I ran out the front door then around the side of the house near the garage. I found Michael on the back step holding Calvin in his lap. He was ghostly pale with blue lips and patchy red spots on his cheeks, his body rigid and convulsing. I kissed his face and cradled his head in my palm. “I love you my little big boy, my poor little big boy.” And we held him tenderly until the storm in his brain was over.

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photo by Michael Kolster

first steps (video)

It occurred to me this morning (strange that I don’t remember it having occurred to me before) that Calvin, who is eight and a half, has never taken independent steps without being under the influence of powerful, sedative, anticonvulsant drugs. His epilepsy diagnosis came two months after his second birthday at which time, because of his other neurological deficits, we were still holding his hands to help him along, not unlike most parents do with their infants.

I have a few videos of some of Calvin’s first steps in the summer after his second birthday. In them, he teeters and tips as if on a ship in the high seas. He catches and rights himself, but overcorrects and teeters to the opposite side. At that point in time he was taking more than his fair share of Leviteracetam (Keppra) aimed at thwarting his seizures, albeit unsuccessfully.

All anticonvulsant medications are sedatives, even the ones that provoke paradoxical hyperactivity and insomnia in some children. They all can cause dizziness and lack of coordination. Most cause lethargy, weakness, gait ataxia, visual disturbances and nausea. I could fill pages just listing the side effects from these drugs that the pharmaceutical industry makes billions selling.

It’s hard to say, but my gut tells me that Calvin would be walking independently if it were not for his years’ long, sustained and massive intake of these chemicals. He still might have trouble negotiating stairs and rough terrain due to his poor vision and muscle tone, but my best guess is that his balance would improve if he weren’t dizzy all of the time or perhaps experiencing vertigo, another side effect of some of the drugs. It makes me ill to think of the millions of the world's parents who must feed their tiny babies, toddlers and tykes unknown quantities of multiple anticonvulsant narcotics, barbiturates and benzodiazepines with few other viable choices beyond letting them seize uncontrollably until they might eventually expire.

I dream about stripping Calvin of all the drugs, detoxifying his fragile system, getting him back to the place where a little boy should be, out from under the wicked and iron thumb of pharmaceuticals. The only way possible, except for the highly unlikely chance of outgrowing his seizure disorder, is to find a cure. But to do that, we need a major leg up in terms of awareness, advocacy and funding: steps that Calvin will never be able to take on his own, but that I can.

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friday faves - diving bell and butterfly

The film scene is stunning—taken from the perspective of the eye itself looking outward—a blood orange light radiating through what seems like a translucent leaf, the fractals of its veins branching off into smaller and smaller ones fine as spider silk. At least that’s how I remember it. Dark, oily eyelashes form spikes through which blinding lights flash. A diminishing aperture carefully sutured closed until its owner is imprisoned in darkness. The film—adapted from a memoir—is The Diving Bell and The Butterfly. The man is Jean-Dominique Bauby.

As the story unfolds we learn that journalist, author and editor of the French fashion magazine ELLE, Jean-Dominique Bauby, survives a massive stroke thrusting him into a coma for weeks only to awaken almost completely paralyzed. He loses the use of his right eye requiring that it be sutured shut. The man suffers “locked-in syndrome,” a bright mind incarcerated in a motionless body, able to communicate only by the blink of an eye. Nonetheless, with the help of an emissary who takes his dictation, he writes his memoir one letter—one blink—at a time.

Often, if not daily, I wonder if Calvin suffers his own sort of locked-in syndrome, knowing what he wants but held captive by his wordlessness, his inability to express his desires. But he shows few stressors of this imprisonment—his irritability more likely due to an upset tummy or his antiepileptic drug side effects—only the stubborn refusal to do something, such as walk down the sidewalk holding my hand, or a stubborn insistence for another, like repeatedly leading me to the bathroom to play with the shutters.

I imagine Jean-Dominique encased in his thick, heavy, claustrophobic diving bell. In his memoir he writes:

My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court.

You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.

If only I knew that Calvin could do the same somehow—escape from his diving bell—I'd be released, to some extent, from my despair over his incapacity.

The author goes on to write about his beloved, aging father:

Every now and then he calls, and I listen to his affectionate voice, which quivers a little in the receiver they hold to my ear. It cannot be easy for him to speak to a son who, as he well knows, will never reply.

I’m reminded of the times in the past five years that I’ve traveled away from Calvin, to see my mother whose progressive Alzheimer’s has become her own diving bell, and to visit friends in New York, Los Angeles and Seattle. When I call home I talk to Michael, or the nurse, and then they put the phone to Calvin’s ear. “Hi Calvin ... hi Sweetie ... it’s Mama. I miss you Baby. I miss you sooooo much.” I know he’s either pushing the phone away, trying to bite it or—in the rarest of cases—smiling. My attempts at connecting with my son—now eight—feel futile. He seems utterly submerged in a metal bell surrounded by murky waters, shifting light and muffled sounds.

However, as I write this I realize that perhaps it’s not Calvin who is imprisoned in this dark chamber, rather I am, which brings me both relief and sadness: relief that Calvin seems oblivious to the world he is missing so very much of and sadness because we are both missing it.

So, instead, I must close my eyes and imagine taking flight from this diving bell—this cocoon—that, in some ways I have made for myself. I must remind myself that, like Jean- Dominique Bauby, I can always float in my dreams.

Version originally published 09.26.11.

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from the film, The Diving Bell and the Butterfly

standard deviation of three

I know my beloved son—compared to the mainstream population—might be seen as a little freak—an anomaly, misfit, oddball—or whatever word the image of Calvin might conjure on any given day at any given moment. Recently, I got inspired to look up the word.

freak \ˈfrēk\
noun
a very unusual and unexpected event or situation.
a person, animal or plant with an unusual physical abnormality.
a person regarded as strange because of their unusual appearance or behavior.
a person who is obsessed with or unusually enthusiastic about a specific interest.
a person addicted to a drug of a particular kind.
sudden, arbitrary change of mind; a whim.

verb
react or behave in a wild and irrational way, typically because of the effects of extreme emotion, mental illness or drugs.

Whether noun or verb, the above definitions describe Calvin to a great degree. He was born unexpectedly early and with abnormal brain architecture that lead to his unusual behavior, the seizures, the drugs and, as a result, his obsession with biting and banging, his mood swings and mania. I remember when he was two—before the epilepsy—a developmental therapist came to evaluate him. I sat on the couch with a cup of coffee and answered a litany of questions about his progress (or lack thereof) to each of which she assigned a number before tallying. She told me that Calvin’s performance was three standard deviations from the norm. When I asked her what that meant she told me that it couldn’t get much worse. With the knowledge that Calvin’s developmental gap was widening as time passed, I wondered what kind of future he’d have, wondered if he’d ever be able to crawl or walk or talk. Then came the seizures and—on the heels of them—the drugs, drugs, drugs, drugs, drugs.

My little-standard-deviation-of-three-freakazoid and I often get the kind of gawks and ogles worthy of a couple of misfits. Sometimes we even provoke tears, whether due to the observer's fear of the unknown or some kind of intimidation of other—of a child behaving in an absurdly odd or grotesque manner. People are drawn to us and repulsed at the same time, like rubberneckers at the scene of some bloody accident.

Mostly, the gawking doesn’t bother me anymore, though I am still conscious of it in an-eyes-in-the-back-of-my-head kind of way. Perhaps I’m desensitized because I love and understand Calvin (to the extent that I can in the absence of his language) and I kind of know his depth of love and affection, his desire to feel good, to please, to progress and learn, which are the most normal things in the world. Or perhaps I feel an affinity with Calvin having always liked being a bit different myself—you know—the goofball, the artist, the clown, the extrovert, the progressivist, the magnet who embraces all walks of life without as much as a blink.

But I still wish others could get past Calvin's differences and see him for who he is, recognize the miserable hand he’s been dealt, understand the obstacles he faces, get to know him and simply love the little freak that he is. If this could happen I can only believe that there is hope for the world to be a much better place. But as long as the fear of other continues to fester amongst many orthodox thinkers, we freaks won't be the only ones facing hard times.

photo by Bebe Logan

be diligent

To be idle is a short road to death and to be diligent is a way of life; foolish people are idle, wise people are diligent.

—Buddha

names and faces

It’s been a while since I’ve woken up to the horrific sound of Calvin having a seizure. The shriek is hard to describe, and isn’t always the same from one seizure to the next except for the fact that it scares the holy crap out of me and I never—ever—get used to it. The sound he makes—that the seizure makes—is somewhere between a desperate cry for help and a blood-curdling scream. At one-thirty this morning, in Michael’s absence, that sound startled me awake. I threw off the covers and ran. Peering into Calvin’s bed through the netted safety canopy, my heart a steely piston knocking in my chest, I could see that he was still sleeping soundly when a little chortle escaped his lips. He had simply been dreaming.

Still, I found it difficult to fall back to sleep. Curled up in a ball I gazed out at the black pines silhouetted against a stone-gray sky. I breathed shallowly so that I could listen for Calvin, for the swooshing of his sheets, the telltale clicking and smacking of a partial seizure rolling into a tonic-clonic one—the kind I fear most—though I detected nothing but his own shallow breaths.

I started thinking about all of the children I know who suffer repeated seizures: of little Leland so soft and mild who, since a mosquito bite infected him with meningitis when he was just twelve days old, has been having several dozen seizures nearly every day; of my friend Emily’s beloved Ronan who is seizing all day and all night because of the wrath of Tay-Sachs disease; of Margot, with her dark lashes and curls whose seizures ebb and flow from day to day but never go away; of beautiful Savannah and Sophie, both in their late teens who—for years now—have been drowning in a slough of drugs and yet have had tens of thousands of seizures with no end in sight; of Lisbeth and Olivia and Sammy and Jack and Matthew and Luella and Elijah and Penny and Franny and Lily and Zach. I thought of Kevin, who drowned at the tender age of sixteen because of a seizure, and of the young sons who’ve died from SUDEP and of the countless other children whose parents have reached out and told me of the suffering their kids have needlessly endured at the hand of this malady called epilepsy. I know these parents live with the same nightmares—many much worse—as we do.

I fell asleep tumbling so many names and faces in dark circles and loops through my mind. And I awoke sleeping next to Calvin in his bed keenly aware that today, as in every other, I must tell the world about the scourge of epilepsy, simply because I can.

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Warning: the video below may be difficult for some to watch, though I encourage you to do so, so that you better understand the plight of epilepsy on our children.

to see

Often, I think about the gawkers who stare down Calvin without the slightest glance at me. They must not feel my reciprocal gaze glaring heavily into their downcast eyes, burning through their oily lids. It’s as if I’m invisible to them, the magnet of Calvin’s otherness blinding them to anything else, fixed in a state of catatonia on my bizarre child. Sometimes, I want to rush up and shake them, upset their stupefaction, wipe the sickly looks off their faces.

And then there are those who avert their eyes and usher their childrens’ glances away from my peculiar son. I remember a beautiful and horrible scene in The Tree of Life by Terrence Malick. A mother and her toddler are sitting on a blanket spread out on the grass. In the background—the neighbor’s yard—a man is lying on the turf convulsing in mid seizure. The mother cups a hand over her son’s brow to shield him from the sight. I replayed the scene to make sure I’d seen it right. The image has stayed with me and I return to it often. I wonder if this kind of sheltering is at the root of some of epilepsy’s stigma and shame, a barrier to compassion and understanding, a way of pretending it doesn’t exist.

Society shields itself from a lot of heinous images and realities. Over the years friends have told me how they don’t like seeing photos of war, of famine, of poverty stricken neighborhoods. Just this morning, I heard statistics on this country’s charitable giving. The poor and middle class give almost twice as much of their discretionary income to charity as the wealthy—a figure that didn’t surprise me. The journalist went on to say that wealthy people who live in diverse communities—in precincts where they encounter the needy often—are more charitable than wealthy folks living in high-class neighborhoods amongst other rich people. It appears true that seeing equals believing equals caring equals giving.

I suppose there are people, though, who don’t want to see certain truths because it makes them feel sad, uncomfortable, or perhaps even guilty. Some of us want our lives to be tidy, like some perfect family photo perched on the bedstand, the children all dressed in their Sunday best. In it, Sally isn't wearing her glasses, Johnny smiles mouth-closed hiding unsightly braces, everybody says, “Cheese,” and looks happy. At the grocer we choose unblemished fruit, the latest expiration date, we pass over the slightly crumpled cereal box. We scoff at beater cars and roads with pits and ruts. We want pristine lawns and pleasant children with good, clean manners. Some of us must have the latest fashions, the newest cell phone, the oh-so-tasteful remodeled kitchen. Some of us don’t want to witness others suffering or starving or waging wars or having seizures. We don’t want to know that our kids are smoking pot, drinking beer, having sex and lying to us. Only other people’s kids do that. We judge and blame people who don’t have jobs or who live on the street because we don’t see how or why, and not because we don’t have eyes, but because we choose to avert them from unfamiliar, thorny, messy situations. We want our lives to remain unstained, to be wrapped up neatly in shiny little boxes, want to walk around with blinders on. We don’t want to feel things except golden rays of sunshine and happiness. Don’t read the news, it’ll make you feel bad.

But perhaps we need to feel bad in order to care about others. There are those of us who feel—who want to experience—all human emotions, who want to know about tragedy and its roots, embrace humanity with its crippled existence, its oddities, its mistakes, its gross inequities, just so we can right them. Some of us don’t avert our eyes from the checkout boy with Down syndrome, or the child with autism, or the drunken homeless man who smiles at us, or the woman carrying a cardboard sign asking for a handout. Who can know their reality but they themselves? And yet many judge, avoid, spurn, shun. Instead, perhaps we can see the world with the curious and compassionate eyes of a child and simply ask, “why?” Then, maybe, we can decide to do something about it.

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Source: NPR Morning Edition

photo by Michael Kolster

pity party

Today I'm having a pity party, all by my lil' old self. Waaaa! I threw it together at the last minute, just after I "slept in" until seven and rushed downstairs, in a fog, to count out Calvin's nine morning pills before it was too late. I quickly tossed back some of yesterday's cold, sludgy coffee then went to get him up.

My husband is away today, which makes my pity party even more pathetic. I have no one to gripe to about Calvin's irritable morning mood. I have little to no idea why Calvin is whining but he probably feels like hell for some reason related to his seizure meds. And, he doesn't want to eat (what's new?) So, after I encourage him to take his pills, I release him from his stockade and walk around behind him like the caffeine-deprived zombie that I am, making my best effort to prevent his baubblehead from banging into door jams. Between slurps of dead, gray coffee I thwart his countless attempts at biting everything in sight (I figure it's easily over 50,000 times that I've said, "don't bite that, Calvin") and it's getting really old. Waaaa!

My wiser side thought I should try to break up my pity party, which, though I do sometimes wallow in them, are really not much fun. So I loaded the kid into the car and headed out to the donut shop. There's nothing quite like grease and sugar to perk up one's spirits on a Sunday morning, except perhaps a Bloody Mary. Once parked, we made it no more than about three steps before Calvin refused to walk any further and "asked" to be picked up. I knew we'd be lucky if we got across the street without being run down by some out-of-towner speeding through Vacationland. I could barely see straight between attempts by my eight-year-old at head butting and yanking my hair out in clumps. This is Calvin's way of telling me that he isn't feeling well. Half way across, in front of an idling gang of motorcycle buffs—my pity party still in full swing—he belches. All is better.

Inside the shop, a quick gaze at the shelves behind the counter tells me that my favorite donuts are sold out. Waaaa! Luckily for me, Frosty's knows how to treat their customers, so Shelby slathered a cruller with chocolate icing and slid it into a bag. Calvin's mania had subsided enough that I thought I'd try sitting next to him in the booth. Between bites of my donut he sat and banged the hell out of the table marking it with little chocolate fingerprints and drool. But hey, at least he was happy, and I started feeling the sugar-high, too.

But back at home I crashed. My pity party perpetuates, pining for my paramour, deprived of a plethora of pleasures practically every other parent and their progeny is partaking in at this point: hiking, beach-bumming, fair-going, window-shopping, picnicking, swimming. Heck, these days eight-year-olds can probably go to the playground or to a friend's house all by themselves, as long as they're wearing a bicycle helmet. Not my kid. Waaaaa!

Instead, I'm sitting here writing as Calvin wakes up from his nap and bangs the shit out of his bed's safety panel. The perfect background music to a most pathetic pity party, indeed. I think it's time to call the Waaambulance!

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strange overtones (video)

I just love this song. I pick Calvin up and we dance to it in the living room. We both smile. I've been into it since shortly after passing David Byrne on a Manhattan street. He was wearing all white that day, too, although t-shirt, cotton Bermudas, socks and sneakers. He flashed Michael a smile, walked to the corner and stretched his legs before heading out on a walk through the city. Thank you, David Byrne, for helping me get my groove on.

friday faves - edna and bess

A year ago, on the plane headed to my 30th high school reunion in Seattle, I sat next to an elderly couple, Edna and Bob, the both of whom were sporting thick bi-focal glasses, neat slacks and sensible shoes. Edna’s hands reminded me of my mothers, thin skinned and gentle with sculpted arthritic knuckles. Edna and I got to talking and she asked me about family. I told her about Calvin and his various challenges, the fact that he can’t talk, can’t walk by himself, and is still in diapers, even though he, at the time, was seven. Then I underscored for her his ongoing battle with epilepsy.

She led into a story about a very close friend of hers who lived nearby in their Philadelphia suburb back in the 1950s. Her name was Bess. Bess was married to Bill and they had four boys and a girl all with names starting with the letter B.

Bess and Edna’s boys were in the same third grade class, which is how the two women met. They began frequenting a favorite diner called Robinhood, which served a couple of slices of bacon, two pieces of toast, a pair of eggs and a cup of coffee all for ninety-nine cents. Over their first breakfast they had a serious converstaion.

“I have something important to tell you that I’m not sure I should," Bess said to Edna, "Will you still be my friend if I tell you?” 

“I don’t know ... lay it on me,” Edna replied.

“Well,” Bess whispered, “I have this disease and it’s bad.” 

“Is it leprosy?” Edna asked, perplexed.

“No.” Bess answered.

“Then I can handle it,” Edna continued,  

“I have epilepsy,” Bess said, shrinking in her chair.

“Well, it’s not catching!” Edna countered in her friendly way.

As the conversation progressed Edna asked her friend whether she had grand mal or petit mal seizures, at which Bess’ jaw dropped open in complete astonishment, “You  know this?” Bess explained how usually when telling people, they’d physically back off—pitch a shoulder away—and the friendship would never blossom, leaving Bess mistrustful, ashamed and dejected. But with Edna it was different.

Seated next to me Edna, reaching deep into her memory, told me how they’d find themselves in stitches over some funny thing and they’d laugh until tears streamed down their faces and their jaws ached. “She was my running partner," and then qualifying the statement, "We didn't actually run, but whenever I wanted to go somewhere she'd go with me." Then Edna described how at times, in the diner or the car, Bess would stop talking mid sentence, quiver for a minute or so, then pick up her sentence right where she had left off. “Did I just go off into twiggyland?” Edna confirmed and lectured, “Did you take your meds?” Bess hadn’t, and said she’d take them later. “No you won’t," Edna barked, “you’ll take them now.”

One night Bess’ husband called up. He asked to speak with Edna. He went on to tell her how much it meant to him that she looked after his wife when he was out of town all week long—every week—for work. It eased his mind, he said.

Although Bess moved away a couple of years later the two friends kept in touch over five decades. Bess died knowing that in Edna she had found the truest of friends.

Originally published 8.20.11.

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Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

hard words

I soothe my conscience now with the thought that it is better for hard words to be on paper than that Mummy should carry them in her heart.

—Anne Frank

Anne Frank

splendor of the normal

For as long as I can remember I’ve loved kids—kids my own age, older kids, younger kids. At eighteen, when I was still pretty much a kid myself, I coached a team full of rowdy swimmers—over a hundred of them, all of whom I adored. The youngest was only four years old and a handful of others were mere months younger than I. I relished coaching every one of them—the slackers, the mischievous, the over-achievers, the uncoordinated, the all-stars. Each had something special to offer; they all enriched my life.

This week, for three days we were graced with the presence of our new friends who were visiting from Virginia. They brought with them their sixteen-year-old son, thirteen-year-old daughter and eleven-year-old fraternal twin girls. It was a gloriously full house. A few minutes after their arrival Michael asked the children if they’d been apprised of Calvin’s health issues. Soberly, the four youngsters nodded yes. And as Calvin spun and screamed and grunted like a little monster in his Johnny-jump-up the children didn’t stare or gawk. They were kind and curious, seemingly eager to be amongst us. And I was eager to hang out in their splendor of normal (though to be honest these kids are exceptional) and to open myself up for pangs of sorrow and of joy, to allow the kids to expand and squeeze and swell and tear my heart into little pieces. That’s just the way I wanted it.

During their visit my mind took little snapshots, morsels of life’s moments with the kind of splendidly normal kids that I don’t have:

Hanna: (to her sisters) with a mouthful of lobster dripping butter down her chin asks, “How can you guys NOT love lobster ... aaaaarrrghhhh?”

Elizabeth: striking an exquisite yoga pose on a grassy hillside sloping down to a backdrop of blue pond and puffy white clouds.

Kate: embellishing (often) on her love of Klondike bars and gelato.

Robert: waxing philosophical on most any subject that might be bouncing around the dinner table.

Hanna, Kate, Elizabeth and Robert: sitting in the living room quietly reading books, and, as I walk past with babbling Calvin, Kate (laughing) says something like, “He doesn’t know a word of language.” I recoil until I realize she is referring to the character in her book, and not to Calvin.

Elizabeth: sitting on Hanna’s lap who is sitting on Kate’s lap who is sitting on the couch—a bona fide sibling sandwich.

Hanna: (to my Michael) “You guys are great parents,” to which I secretly begin to cry in the stairwell clutching Calvin.

Hanna: telling me how she wants to be a doctor or researcher, Elizabeth, a dancer-actor-model-singer-lawyer, Kate, an architect, Robert, perhaps a scientist. (I might have these mixed up, but you get the gist.)

Kate: telling us how fun we are.

Me: feeling exactly the same about them and wishing they didn’t have to leave.

Their happy, energetic engagement with us filled a huge void in my life, if only for a few days. It made me crave it for myself while at the same time it stressed the sharp and bitter contrast to the life we lead with Calvin who—totally drugged up—still has seizures, cannot talk, and cannot walk without our assistance. But while the disparity between our daily experience stings, I wouldn’t trade those precious moments with that bunch of lovely kids who brought me a glimpse—a shot—of some much needed splendor of the normal.

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dreamscape

In the middle of the night we lay four or five across on brown paisley bolsters, like sausage links—pigs in a blanket—stuffed into our fiber-filled mummy bags. Suddenly, I sat bolt upright and shouted, “Mom, I hate you!” My brother Matt, sleeping in our trailer’s tiny loft space, heard me, and of course I woke up my mom, dad and four other siblings, too. They said later that I’d flopped right down and went back to sleep, remembering nothing of it the next morning as we all sat down to a fried clam and pancake breakfast.

I don’t remember that particular camping week dream, though I do remember that I’ve often dreamt about being bugged to hell by my mom or Matt before waking myself up whining for them to stop. I’ve had recurring dreams, such as the one-haired baby who’s about to be smashed by a gigantic boulder careening down a dark mossy hillside such as those seen in epics filmed in Cornwall, Scotland, Ireland. Then there are the dreams in which I breathe underwater, soaring through the sea as if I were some manta ray, or the dreams where I’m hanging out with my buddy Jimmy Stewart over a cup of coffee or a bourbon, slapping each other on the back talking about old times. I still dream often about pals from my youth, of my best friend Lidia with her platinum hair and eyes full of light and stars, of Craig with his thick dark curls and crackly irises flecked with green and gold, of one of the many swim team boys I used to have a major crush on, all tan and wiry with that gravely pubescent voice. I even have an occasional nightmare about that compulsive liar ex-boyfriend stalking me before trying—unsuccessfully—to coerce me into getting back together with him. And a smattering of my dreams feature other friends and former boyfriends, all of whom—with the exception of the shameless liar dude—are kind, loving and supportive, like best friends should be, and I wake up smiling.

But the one person who travels through my sleepy trance most is Calvin. I remember my first dream of him when I was pregnant. In it he was a newborn who’d come into the world with a mop of crazy, curly blond locks (like he had when he was two) and a bucketful of things to say. His words streamed forth from a smiling dimpled mouth already boasting a couple of teeth. Most often, though, dreams of my son are nightmares in which he is seizing. I know I dream in color because Calvin’s face is blue and, like most dreams, they are indistinguishable from reality until I wake up. I see the seizure, I rush to him, I cannot make it stop then I wake up in a sweat running to his bedside to see if he is okay. Once, I woke up from a dream of Calvin seizing only to find him seizing in his crib.

Somehow there must be a way to rewire my dreams—to rewire Calvin’s brain if only in my dreams. Perhaps I can hone the skill of sculpting these dormant shadows of Calvin into shapes of beauty, happiness and peace rather than reliving the terrible reality that is epilepsy again and again in my sleep. If I could, I’d dream of Calvin, Michael and I in a world unknown to us. We’d be swimming in a clear lagoon spooning into a crescent beach, bright white sands dissolving into cyan and indigo, then ribbons of black at the edges. The three of us would float and breathe under water—me and my mermen—our bodies mingling with bands of shiny kelp, the sun glinting off of the water’s ripples like crumpled foil or stardust. We’d beach ourselves and run and run in sinking sand, getting nowhere in the super slow-mo of dreams, except we wouldn’t be worried or panicked. We’d be blissful—floating—the breeze winding through our ropey hair, our faces toward the sun. We’d be golden—our boy perfect, skipping down the beach kicking up sand and talking up a bucket full of words, ideas. Then we’d swaddle him close and kiss him until the next day’s sun came up. We’d fall asleep in the cool dawn and never—ever—awaken from that dreamscape.

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Give to cure epilepsy: http://www.calvinscure.com

grace

I want to send my friend Emily and her son Ronan all the super mojo, good vibes and virtual love possible for the struggles they both face—struggles that no child or parent should ever have to encounter. And so, in their honor, I am reposting the following piece:

A new friend, Emily, whom I’ve never met in person, has a two year old son named Ronan who was diagnosed with the regressive, terminal disease, Tay-Sachs, when he was just nine months old. From what she’s written, it seems he likely hasn’t got long to live. I think of her and Ronan daily, sometimes hourly, and check in on Facebook and her blog Little Seal, to steal glimpses of her beautiful boy and to immerse myself in the poignant words she writes about life with her precious son.

I sometimes read what others write in response to her blog posts. Most entries are compassionate and understanding, often written by parents of ill children. One reader posted this comment:

Jeremiah 29:11

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Not to harm you? I think. I bristle at the words, the false image they conjure in my mind while contemplating my own son Calvin’s tragic health and developmental difficulties. I wonder if these words can possibly soothe her or whether they simply cut her to the bone—like they often do to me—grind salt into a gaping wound that she and her boy have inexplicably sustained. That’s how I still feel sometimes when well-wishers ignorantly toss their belief systems in my face—like a bitter pie—thinking somehow they know better than I the cause and/or destiny of my sick child, thinking their words will serve to make me feel better. The only sense I can make of comments like that—which I know are meant to console—is that they mostly serve to comfort the individual offering them, in an effort to make some sense of the incomprehensible tragedy of a sick and dying child. I'm not saying that the intention is wrong, but perhaps better kept to one's self.

When I tell people about Calvin and our struggles, about life's uncertainties raising a child whose brain isn’t complete and who suffers repeated seizures for which he must ingest copious drugs that have yet to succeed at stopping them, some tell me it's God's will and others tell me that I am brave.

Brave? No. Scared shitless? Yes. At times literally shaking in my boots. Bravery has little to do with being the mother of a chronically ill child, who at times seems to live on a thread of existence. We just do what we do, move through one moment to the next hoping that will make the future seem less daunting, less all-consuming, less suffocating, less hopeless. What else can we do but indefatigably love and care for and cherish our children as if there is no tomorrow—because maybe there won't be? It’s not called bravery; it’s called motherhood. And yes, it's likely there are a select few who'd abandon the challenge of caring for kids like ours, abandon the grief, the strife—their children—but perhaps not because they aren't brave but because they aren't strong. They aren't Dragon Moms, to use the term Emily so effectively coined, the term that I think perfectly describes the way I often feel.

When I read Emily’s words and view the muted, acid-tinted, dreamlike photographs of her son, what I see is not a brave woman but one with the grace of ages. If I let my mind wander she appears as a barefoot nymph with blushing skin and shining rosegold locks, her body loosely draped in a simple gossamer gown, Ronan gently cradled in her arms—a pure embodiment of grace. I see her loving embrace of Ronan—the way she delicately supports her son’s head with slender fingers just at the back of his little bird neck, like I used to do with Calvin. I see grace in the way her gaze seems to linger on him as if it would never end. I see grace in her reply to a stranger’s ignorant, probing questions about her dying child. Hell, I know I'd even see grace in her bitterness, her bark and her bite, her firebreathing struggle, in her grief, sorrow, despair, anger, self-pity. Because grace is honest and true, grace is unapologetic, grace cannot be put on.

And so we, mothers of these innocents who suffer, move forward one step at a time, perhaps gracefully, but only hoping to be brave.

Originally published 11.02.11.

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Please join in the National Day of Hope for the National Tay-Sachs and Allied Diseases Alliance in honor of Ronan Louis 

Ronan

the fruit of patience

Patience is bitter, but its fruit is sweet.

—Jean-Jacques Rousseau

photo by Michael Kolster

at the end of my leash

If this kid isn’t on the verge of a seizure then I don’t know what the hell is wrong (though truly my hunch is it's still probably the damn anticonvulsant drug side effects.) After two relatively good days, Calvin ended the afternoon in hysterics leaving me as a seething ball of nerves. While in the stroller he coughed so hard and long I thought he was going to puke. I wanted to run and hide, punch a tree, rip my hair out, scream at the world. Completely irked, I tied Rudy’s leash to the stroller, impatiently scooped Calvin out, stood him up on his own two feet and held his hands on the handlebar to push it. I was hoping he’d release whatever it was that was causing him distress. Thankfully, the coughing stopped as he slapped flat-footed and pigeon-toed down the paved lane through the pines.

We got about half a block then began crossing the street, Calvin swerving and swaying in my tight one-handed grasp, my other hand guiding the stroller. I heard a few people approaching the intersection from the other side of the street—by the sounds of it, a mother and her small children. One child was squealing, but in my anger, frustration and embarrassment I couldn’t bare to meet their gaze, just kept my head down watching Calvin in case he tripped. Then, from behind, I heard one child say something that I couldn’t quite make out. She repeated it, this time louder, “He’s on a leash!” I looked down at Rudy just to make sure he was still at my side as we slowly made our way. He was right there, still tethered, though lagging slightly behind as old dogs do. Just as I took my eyes off of Calvin he dropped to the ground like a stone—and though able—refused to walk any further. I was so angry—having to deal with this stubborn kid for what has sometimes felt like an eternity—I could’ve spit. There, in the middle of the sidewalk standing above Calvin I muttered F-bomb after F-bomb in as many ways as I could think to use the curse (which is a lot.) I hoped no one was watching—listening—as I grabbed Calvin and tossed him back into the stroller. All the while I tried to tell myself, He can’t help it, he can’t help it, but my anger did not subside. He started coughing and writhing like a lunatic as soon as I buckled him in, his loathsome racket bouncing around in my skull like a fly in a jar.

As we approached our drive it occurred to me that the child who had shouted, “He’s on a leash!” was referring to my eight-year-old son, not to Rudy the dog. My heart sunk into my stomach, my head into my shoulders, and a wave of pity and shame washed over me. And as I gently helped Calvin out of the stroller I wondered if he’d ever have the luxury of living his life drug free—seizure free—feeling good and walking independently instead of like some rabid dog at the end of my very short leash.

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Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

friday faves - a man and his family

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A Man and His Family by Christy Shake

a thousand forests

The creation of a thousand forests is in one acorn.

—Ralph Waldo Emerson

 

photo by Michael Kolster

elizabeth and sophie

Since Calvin was first diagnosed with epilepsy six and a half years ago I’ve made the acquaintance of a lot of incredible people, so many so that I have real trouble remembering names and the names of their kids and sometimes even faces. Some I've met in person while others appear only as faces on the Internet. One of them, Elizabeth, I can safely call a soul sister just as she has referred to me as her kindred spirit.

Elizabeth’s teenage daughter, Sophie, has had seizures since she was three months old, perhaps longer. Elizabeth has written a book about it and maintains a daily blog about Sophie, her two boys, and the wrath of seizures, but often expands into thought provoking posts about politics, the welfare of others, of the gross inequity of things in this country, of the need for compassion and progressive thought rather than selfishness, fear mongering, hate and reactionism.

I have been following her blog for a short time and this morning I came across this entry, which—not unlike most of her other posts—moved me, but this one in particular like an out of body experience, as if I were looking in on my own life:

Sophie's hands were clammy all day and I'd say that clammy hands and feet, along with drooling, come in second behind seizures as most disturbing elements of a life. One means the other and the other means one, and we'll never know for sure what comes first or how to make it stop. We were sitting at the kitchen table eating dinner, Sophie tilting to the left as if her bones had come undone, clammy hands and feet and un-knit bones, an unseen seizure, did it come first or after but never mind, we're not used to it and rather annoyed by it, the boys and I, sometimes. No less Sophie, who is floating, I'm certain, clammy, her mouth a bird's barely open, hungry, plaintive in a speechless way. I spooned food into her mouth and listened to her brothers, their talk as concrete as Sophie's un-knit bones and vowels and clammy hands slipping. I moved my eyes to theirs and in the moment it took to look, Sophie's own eyes rotated to the right and upward but in that same moment, the moment that I looked at the boys, I saw her eyes, too, and I said, loudly, STOP SOPHIE, NO, SOPHIE, STOP SOPHIE, NO SOPHIE, as my eyes rotated from the boys to hers and hers rotated away from the right, back and stared right into mine. Eyes were all rotating, and the pause that made room for my shout ended, and they were talking again and I said, Did you see that, guys? I stopped it. I got it just in time, did you see that? Good job, Sophie, I said, we didn't need that one. Oliver put his food down and rotated his eyes upward and around and said, That was A-MAAAAZING, MOM. You're a miracle maker, and then I giggled and rolled my eyes.

Thank you, soul sister.

For more vivid, beautiful, raw and sometimes humorous writings, see Elizabeth’s blog: a moon, worn as if it were a shell.

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Give to cure epilepsy: http://www.calvinscure.com

Sophie as an infant

paradox

In epilepsy there lives a paradox that is both self-serving, and yet possibly counterproductive.

For children, men and women who have epilepsy, particularly those who otherwise enjoy good health and typical lives, there is an important effort to demystify and destigmatize the disorder. These people who suffer from epilepsy want to be seen as “same” rather than “other.” They do not want to be shunned, outcast, shamed or discriminated against. It is their goal—and rightfully so—to live full lives, to be included in society, to enjoy each day without feeling marginalized or avoided like the plague as has historically been the case.

In recent years these valiant efforts, by people for people with epilepsy, have enjoyed some success, including the emergence of characters in movies with epilepsy appearing just as they are—normal folks, albeit some of whom wear helmets. People with epilepsy are speaking out and letting others know they are not to be feared, but rather embraced, just like anyone else, and that living with epilepsy is not a barrier to whatever they might want to accomplish.

On the flip side, this "normalization" of epilepsy and its impact on lives might risk impeding the progress of epilepsy research and advocacy. If the myth that epilepsy is a benign condition where you take a pill and everything is okay—normal—persists, we might have a harder time garnering the appropriate funding to find a cure.

So, while some folks with epilepsy are enjoying seizure freedom with the use of devices, surgery, dietary therapy and/or drugs (don’t forget the drugs always come with distasteful side effects) and are able to go about their daily lives, I am making a concerted effort to tell people about epilepsy’s horrors: the uncontrolled seizures, the repeated hospitalizations, the powerful mind-numbing drugs, the painful blood draws, the abhorrent drug side effects, the consequential developmental delays, the risk of sudden death in epilepsy (SUDEP) and death from related accidents such as drowning, the financial burden on society and families, the emotional toll on families, the shameful lack of pharmaceutical, public and private funding for better treatments and a cure, the pitiable lack of a prominent celebrity voice advocating for epilepsy education and research.

To be honest, epilepsy—particularly uncontrolled—is a disastrous, tragic condition not to be underestimated. It can strike anyone at any moment. There is no preventative lifestyle. There is no predicting its wrath. Moreover, there is no cure in sight. But we have the power to change that. We simply need to understand epilepsy and advocate for its awareness and funding.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time. It's as easy as pushing a button.

Give to cure epilepsy: http://www.calvinscure.com

Savannah, 18, was born healthy but developed epilepsy as a child. Despite trying numerous drugs, dietary therapy, brain surgery and an implanted device, her seizures persist. She has had over 28,000 seizures in her lifetime. 

lucky

Lately I've been bemoaning Calvin's lack of appetite and subsequent weight loss due to the side effects of one of his three antiepileptic drugs—the one that seems to be doing the best job at controlling his seizures. He weighs the same as he did nearly two years ago, though is much taller. Yesterday, I watched Michael walk Calvin around the perimeter of our friend's pool noting our son's knobby knees, painfully thin arms and legs and protruding ribs and spine. 

Then, last night while rereading some of my earlier posts, I came across the one below and—considering my recent mindset over my thin child—I decided to repost it here:

This morning, after I sent Calvin off to school on the short bus, I finished my bran flakes, folded a bit of laundry, put some dirty dishes into the dishwasher and brushed my teeth. I chose the orange pair of flip-flops, ran a brush through my hair, tied it back, wound a beaded bracelet around my wrist then grabbed my keys and wallet.  As I was shutting the French doors on my way out I happened to glance down at the coffee table. On it was this morning’s copy of the New York Times. The cover photo gave me great pause.

The emaciated child in the photo is haunting. I read the first few lines to learn that the babe is just one of over five hundred thousand children starving in Somalia because of insurgents blocking their escape from a famine. I imagined this suffering child as my own child, as Calvin. The thought nearly brought me to my knees in grief.

I read no further as my mind soberly turned to the image of our comfortable home, the attractive addition we just finished on our kitchen, the lush trees, shrubs and flowers surrounding our house, which at times, when they are thirsty, I drench in water. I think of the list of groceries that I make every few days knowing reliably each item will be crossed off as I stroll down air-conditioned aisles plucking enormous fruits and pristine waxed vegetables off of the shelves.

And Calvin, little Calvin, who cannot talk, cannot walk by himself, remains in diapers and must cope with the scourge of epilepsy and a battery of potent drugs, is safe and fed, warm, dry and clothed, enjoys medical care, nurses and teachers. He isn’t thirsty or in want of shelter. He isn’t at risk of suffering and dying from cholera, malaria, dysentery or starvation. He—we—are so goddamn lucky it isn’t funny. Are we so deserving? I don't think so.

Driving home from the grocer, with a hatch full of bags boasting a myriad of fresh fruits, vegetables, meats, cheeses of the world, dog biscuits and pasteurized milk, I cried tears of sorrow for the  children and tears of shame for the times I've complained about hunger, complained about costs, complained about traffic, complained about losing my wallet, complained about breaking a glass, complained about the weather.

And entering the cool house to unload my spoils I glanced in the front hall mirror at my clean face. I studied my features—both inside and out—that I share with the whole of humanity. I thought to myself, What makes me so special? That's just it—I'm not.

Originally published 8.02.11.

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Tyler Hicks/The New York Times