the a to z of epilepsy

A is for antiepileptic drugs, ambulance, ataxia, aspiration, anguish and accidental death

B is for blood draws, brain damage and burden
C is for concern, cyanosis, convulsions and Calvin
D is for dizziness, doctors, dietary therapy, developmental delay, drowning, dread, discrimination, death and despair
E is for endless, electroencephalogram and emergency room

F is for foul, frustration, fret and fear
G if for gut-wrenching, grand mal seizures and grief
H is for headache, hospital, hallucination, hyperactivity, head injury, hemispherectomy, heartache and hell
I is for incurable, insurmountable, intubation, intravenous, irritability, indescribable and injury
J is for joyless, jitters and jinx
K is for ketogenic diet and kidney failure
L is for lethargy, lethal seizures, liver-failure, lobectomy and love
M is for mania, magnetic resonance imagery, medicine and misery
N is for never-ending, neurologists, needles, neglect, nocturnal seizures, nausea, nightmares and nine-one-one
O is for oxygen desaturation, occipital lobe and onerous
P is for pain, pills, pediatric intensive care unit, prevalence, pharmaceuticals and perseverance
Q is for questions, questions, questions
R is for regression, relentlessness and regret
S is for seizures, syringes, stigma, side effects, status epilepticus, sudden unexplained death in epilepsy (SUDEP), sleep deprivation, surgery and suffering
T is for tremors, toxic drugs, tongue biting and torment
U is for underfunded, underestimated and unimaginable
V is for visual disturbances, vexation and valium

W is for worry, weight loss, wretchedness, woe and why?
X is for x-ray
Y is for yelling
Z is for zombie, zoned-out and zero-sum

Please share Calvin's Story and help bring us one step closer to a cure.
Give to cure epilepsy: http://www.calvinscure.com

Calvin, photo by Michael Kolster

if you had to choose

If you had to choose, would you want a legally blind child or one who couldn’t talk?

If you had to choose, would you want a child who’d never talk or one who couldn’t walk by himself?

If you had to choose, would you want a child who suffered seizures or one who was legally blind?

If you had to choose, would you want a manic child or one who was a zombie?

If you had to choose, would you want a child with epilepsy or one who was on the autism spectrum?

If you had to choose, would you want a child totally doped up on drugs or one who suffered seizures?

If you had to choose, would you want a child who could never be potty trained or one who couldn’t feed himself?

If you had to choose, would you want a child who had chronic headaches or one who had constant gastric distress?

My eight-year-old son Calvin suffers from all of the above at the same time. We had no choice in the matter. Neither did he.

Please share and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

lucky cat

My parents raised me to value quality of life over quantity of years of life. At the dinner table they discussed what they wanted us to do if either of them ever became a vegetable. “Pull the plug,” they’d say, and though we’d laugh we clearly understood their sincere message.

Back in February Michael and I adopted a stray kitten that had repeatedly come to our doorstep. We took her in, had her spayed, dewormed and vaccinated, gave her a cozy place to sleep, food to eat and the companionship she thrived on. We learned from neighbors who’d seen her around that she’d likely been living outside for at least nine months. We named her Maneki Neko, which means Lucky Cat in Japanese. Neko for short.

As much as Neko we were the lucky ones; lucky to make the acquaintance of a smart, beautiful, funny, affectionate cat who liked Rudy and who nearly always came when we called her. We kept her indoors and enjoyed her playful antics until the mild weather arrived, but as soon as it did she expressed her keen interest in romping around outside again and we obliged.

During my quiet spring afternoons spent gardening Neko became my much-loved companion—chasing butterflies, climbing trees then coming back to me to say hello—something I’ve always dreamed Calvin could do. One of our neighbors, however, felt Neko was a nuisance when she sometimes roamed into his yard. It quickly became clear that we would not be able to let her outside without worrying she'd be snatched up and sent to animal control or enduring a barrage of complaints that would add to an already elevated stress level due to caring for an ill child. One solution the neighbor offered was to clip her on a dog run so she wouldn't wander. But in our minds, understanding her strong instinct to bond with nature (she was not accustomed to living life confined indoors nor was she afraid to go outside nor was she old and tired and apathetic) keeping her indoors or on leash would be miserable not to mention logistically impossible for our household during the warmer months.

For Neko to be truly happy—and thus for our own happiness—we needed to give her a certain amount of joie de vivre, even if it meant risking encounters with crazy dogs, vicious wildlife and fast cars. Deeply saddened by our regrettable circumstances we decided to give her to a kind friend who lives on a dead end street in a neighborhood that embraces outdoor cats. There she can roam happily and enjoy the quality of life she deserves and, though we miss her and the levity she brought to our home, we know she's much better off, while at the same time we can preserve our peaceful, complaint-free existence at home.

Since Calvin was diagnosed with epilepsy when he was two I think about his quality of life often, particularly since his poor neurological health and epilepsy put him at greater risk of dying prematurely from SUDEP (Sudden Unexplained Death in Epilepsy.) I must seriously consider his quality of life especially when emerging seizures result in the temptation to increase his anticonvulsant medications. These three medications cause him to be hyper and zombie-like and nauseous and feeble and manic and spastic and dizzy and uncoordinated and unfocused, all the while impeding his development. Most recently I chose not to increase his medication just to chase a few elusive seizures that haven’t disappeared despite the doubling of his most effective drug. Why? Because doing so would likely compromise Calvin’s already impaired quality of life perhaps more so than the seizures themselves.

If only Calvin were lucky just like sweet Neko everyone would be so much happier living in the free and the clear.

Please share and bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

Neko

memorial to the fallen

Vigil strange I kept on the field one night

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell.

— Walt Whitman

tombstoneterritory.blogspot.com

this is what you shall do

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

photo by Michael Kolster

pain and inspiration

My brother Scott is a world-class Master’s swimmer. He’s in his early fifties still swimming times nearly as good—if not better in some cases—as he did in College. Scott has competed in countless Master’s Nationals. Over the years he’s broken a few world records in his age group.

Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.

Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.

At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and sobbing. Scott described the event, my father not having been able to attend. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, all for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.

My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin and with his chronic epilepsy. I only wish I could share that same magnificent influence with my own son ... and with others.

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

Originally published 5.2.11.

my big brother, and ham, Scott

friday faves - blue hill

One of the three or four family trips we’ve taken since Calvin's epilepsy diagnosis was six years ago. We loaded up the car with camping supplies, firewood, Calvin, and a bunch of other paraphernalia filling the car to the brim, then headed north along Maine’s serpentine coast to one of our favorite places in the world, The Lookout.

Perched in the center of a grassy hillside is the historic white hotel. It shares a thin peninsula with several modest cabins buttressed by chunky stone fireplaces and weathered wooden decks smelling of pine and seawater. Inside the cabins, oversized couches with thin upholstery elbow shelves stacked with dog-eared books, faded magazines and board games missing pieces.

Once inside, we dumped our stuff on a soft bed covered in a tufted cotton spread and carried Calvin to the bluff at the land’s edge. Michael attempted the steep eroding ledge first, I handed Calvin to him then skidded down in my sneakers. The tide was way out revealing a curved sandbar of pebbles and crushed shells, tiny chips of indigo and knobby barnacled oysters with opalescent cores. We spent a few hours exploring clear pools, warming ourselves on the rocks and resting in the shade of twin cypress trees that clung to chunks of soil atop a rocky outcropping.

After a lazy day we put Calvin to bed then cooked and ate dinner in the adjoining kitchen. Amidst the dull clang of wooden spoons on metal pots we heard Calvin make a strange sound. Quickly, we peeled back his blankets to see him blue and gasping. It appeared he was having—or had—a seizure. This was the first one since his epilepsy diagnosis the previous month and after having started taking his first anticonvulsant drug. Calvin was only two.

I ran up the hill a hundred yards to the caretaker’s house. It was after ten and dark outside but I could see the glow of a kitchen light through a small window. Hearing my urgent knocks the caretaker came to the door and, out of breath, I asked to borrow his phone to call 911. Then I ran back to our cabin where Michael held our boy in his arms on the bed. Calvin was feverish, clammy and listless.

Within minutes some First Responders appeared, the ambulance not far behind. They asked us if Calvin was responding normally and I told them “it’s hard for me to tell,” the permanent jerky roving of his eyes making it difficult to know. “Calvin never looks us in the face or answers to his name,” I said. The EMT checked his pupils and heart rate and told us that she believed he was post-ictal. “What does that mean?” I worriedly asked her. She described it as the disorienting state after a seizure occurs.

In the boxy ambulance I laid on the gurney hugging Calvin in my lap. Michael hurriedly packed up our things and followed us in the car. The Blue Hill Hospital, twenty minutes away, was tiny, but the staff was kind and understanding, though there was really nothing they could do.

In the wee hours of the morning after Calvin had stabilized we embarked on our three hour ride home. Later that day, a doctor’s visit and some x-rays revealed that Calvin had pneumonia. We learned that any illness, no matter how benign it might seem, often triggers seizures in people with epilepsy. 

After that harrowing weekend we didn’t take any family vacations for over four years, and since then, only two. The seizures continue to surprise us, and the drugs climb and multiply. So mostly we stay put, and dream often of visiting magical places again, like The Lookout in Blue Hill.

please share and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com
 

May 2006

unforgiving earth

Yesterday I was the urine delivery girl, shuttling Calvin’s pee to the lab for testing. Lately, we’ve had to do this bi-weekly since he’s got what they’re calling sludge in his kidneys resulting from his diet, his calcium supplementation—or lack thereof—his anticonvulsant drugs or some combination of the above.

While I was standing at the lab window holding Calvin’s specimen I heard a distressing sound coming from the room next door where they draw people’s blood. I took a step or two backwards and through the skinny oblong window in the door I saw a chubby baby about a year or so old. He was red in the face and crying as the technicians tried to draw his blood, though they were obviously having trouble.

Tears welled up in my eyes and a sorry grimace twisted my face in that familiar way sobbing does to a person. The woman behind the window looked worriedly at me as I handed her the BIOHAZARD bag containing the cup of Calvin’s urine. I explained, while pointing to the room next door, that the child’s misery pained me, reminded me of the years of suffering Calvin has endured—and continues to endure—whenever he has to have blood drawn because of his epilepsy, which is often.

I left the lab with wet eyes, found a bench outside, buried my head in my hands and wept, and as I did I remembered one of the countless times a phlebotomist couldn’t find Calvin’s vein after several painful tries. She sent us away to a different lab hoping we'd meet with success. As we were leaving a woman touched me on the arm and said something like, “I’m so sorry, I know how hard it is, I’ve been through the same with my daughter.” Somehow hearing her say that lifted a weight off of my shoulders. She had taken some of my grief as her own.

Then I remembered when I was eleven or twelve and had plantar warts on the bottom of my heel from going barefoot in swimming pool locker rooms. The doctor would freeze the growth, which was embedded deep in my flesh, wait a few days then cut out the dead cells and re-freeze the raw wound. This went on for weeks. The procedure was extremely painful, like putting salt or gasoline in an open wound then stabbing it. My mother held my hand as I lay on my stomach on the blue vinyl examination table. I’d squeeze her hand when it hurt and she’d squeeze back as hard as she could. I couldn’t see her face but I believe she was crying for me. I could hear it in her trembling voice, in her faint sniffling.

And then, while still slumped on that lab bench, I thought of all the little suffering kids in the world: my friend Kyle’s sixteen-year-old sister and my friend Katie’s seven-year-old niece who both battled leukemia and lost. And Katie’s nephew who continues to struggle with the aftermath of the toxic treatment to fight brain tumors he had when he was five. I think of the little children who have diabetes and suffer needles and other trauma that I’m probably totally ignorant about. I think of my friend Monica whose boys have both had heart surgery, one when he was just five days old, the other barely a teenager. I think of the kids who have brain surgery or bone surgery or any kind of surgery or chronic condition. And I think of these innocents and shudder when I hear strangers say that there is a reason for everything, and I wonder if parents of these children really believe that.

After I gathered myself together I took a deep breath, straddled my motorcycle, fired her up and took off down the street, the only thing between my tears and sad thoughts being the fresh air, and I was keenly aware that my feet were gliding just inches above the unforgiving earth.

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

playing ball

When I was in my early teens I remember one sunny day when I followed my dad into the back yard to a clearing between the trees. His thin body towered above me, a well-worn short-sleeved sweatshirt hanging on his broad back. In his right hand he palmed a nut-brown football with a dirty seam, the sinews in his muscular forearm plucking like strings on a guitar.

My dad placed my small hand on top of the ball, lacing my fingers into its raised stitches. In his deep smooth voice he described the drawback, the lead with the elbow and then the spiral release like a catapult off of my fingertips. Then he showed me his toss with the grace and finesse of a true athlete, the ball arching in perfect gyration. For me, holding the ball in one hand was difficult, but my large palms and long fingers—compared to my pint-sized physique—made it possible.

For what seemed like hours we were out there together on the short sunburned grass. I’d toss, he’d catch then lob back to me, the ball often dropping dead between my outstretched arms and bouncing erratically like a jumping bean before rocking to a final rest. After about a gazillion throws I started to feel and see the result of my efforts, my dad’s precise critiques about each launch honing my skill.

At long last I hurled the orange-peeled ball into a beautiful high curve that came to a spinning halt in my dad’s palms. “Now you’re throwing like a man!” he hollered. I blushed. My heart burst with the happiness of the tomboy in hand-me-down cutoffs and faded sneakers that I was.

I ache to see Calvin and Michael out in our backyard doing the same as I sit back and sip tart lemonade languishing in the summer heat. For now—at least until we find a way besides the powerful sedatives to stop Calvin's seizures—I can only dream.

Originally published 5.24.11.

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

Football in Grass by Jayel Aheram

sun-face buddha, moon-face buddha

The great master Ma was unwell. The temple superintendent asked him, “Teacher, how has your venerable health been in recent days?” The great master said, “Sun-face Buddha, moon-face Buddha.” 

Buddha

huck finn

We had the sky up there, all speckled with stars, and we used to lay on our backs and look up at them, and discuss about whether they was made or only just happened. Jim he allowed they was made, but I allowed they happened; I judged it would have took too long to make so many. Jim said the moon could ‘a’ laid them; well, that looked kind of reasonable, so I didn’t say nothing against it, because I’ve seen a frog lay most as many, so of course it could be done.

—Mark Twain's Huck, from The Adventures of Huckleberry Finn

In recent years I’ve been taken with reading and rereading the classics ... Hemingway’s The Sun Also Rises, F. Scott Fitzgerald’s The Great Gatsby, Nabokov’s Lolita, Harriet Beecher Stowe’s Uncle Tom’s Cabin, Salinger’s The Catcher in the Rye. I love them all. This time through Twain’s The Adventures of Huckleberry Finn, though, I am looking at the characters’ exploits from a much different perspective than when I was a youth.

The other day, after an entire day of wonderfully backbreaking gardening, I washed off my dirt-smudged face, pulled on some cowboy boots, donned my leather jacket and took off on a ride. She started right up with the kind of meaty, gravely purr I’ve quickly come to love. In some ways driving my motorcycle feels liberating, like riding a responsive, obedient horse, bringing her to a gallop with the flick of a wrist—zero to fifty in no time flat.

Cool air rushed up my sleeves as I meandered down Mere Point past impressive granite shelves sprayed with heather and flox, trees caked with lichen, and some apricot-colored buds dotting a pine canopy. The air smelled fresh but of nothing else. Near the end of the road the sky opened up as did the land, and I could see across a clear-cut parcel to the water. At the boat launch I cut the engine and sat quietly gazing across the inlet.

Once the residual buzz of the motor gave way my senses drown in the sounds of chirping birds, waves lapping the shore and the sun on my face. At the end of a long pier two lovers embraced as if they were alone in the world. The pier, with its weathered wooden slats, reminded me of the raft that Huck Finn and Jim floated down the Mississippi river. I thought about how their fantastic journey was as much about forging their companionship as it was about their physical adventure.

I studied the lovers—her pale arms contrasting with his black hair and shirt, their legs disappearing over the side of the pier, perhaps barefoot as I imagined Huck and Jim to be, dipping their toes into the water like I'd done before. The lovers remained as I shut my eyes and imagined Huck and Jim floating, tossing twigs into muddy water, fishing for their breakfast, building campfires, telling tales, getting to know each others realities which were so very different and yet so perfectly matched, not unlike some fathers and sons.

I reminisced about some of my escapades as a young person and the curious friendships I’ve formed over the years. Then I considered, as I’m known to do, that my boy Calvin will never enjoy the luxury of getting into the minds and thoughts of other folks. And then a stream of consciousness overcame me . . .

he’ll never fish from a pier with his dad or build a campfire or sleep by himself under the stars or embrace a lover or tell a story or ride a motorcycle or captain a raft or talk with a friend about the origin of stars or read a book or write a word or cook a meal over hot coals and a flame or swim like a fish in a river or catch a firefly or gallop a horse or forge a friendship like Huck and Jim or the lovers or most anyone in the world or write a work like Samuel Clemens might have thought of doing when he was Calvin’s age.

Then I started up the engine and continued my own little escape up the road not far from the water's edge and under the invisible stars.

Thomas Hart Benton, A Social History of the State of Missouri: Huckleberry Finn (detail of north wall), 1936, Missouri Department of Natural Resources, Missouri State Museum.. From cover of Gerald Graff and James Phelan, Adventures of Huckleberry Finn: A Case Study in Critical Controversy (Boston, Bedford Books, 1995).

it's that simple

Sometimes it just hits me: every morning and every night I give my eight-year-old, thirty-eight pound kid the equivalent of Valium plus two other powerful anticonvulsant sedatives. I've stuffed these drugs down him twice—sometimes three times—every day for the past six years ... for three quarters of his entire little innocent life. Imagine doing the same to your kid. Perhaps you already do. It's sickening.

Epilepsy has little advocacy. People who have it, and parents of children who have it, often keep it a secret for fear of discrimination due to its long and recent history of stigma. Without advocacy there is no awareness. Without awareness there is no compassion. Without compassion there is no funding. Without funding there is no cure. Without a cure our children, and tens of millions of others, suffer their entire lifetime from seizures and/or drug side effects. It's that simple.

Here is something else that is simple: you can make a difference just by sharing this story. What have YOU got to lose?

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

day forty-seven

Yesterday was day forty-seven—forty-seven days since Calvin’s last observed grand mal seizure. It was also the day that Calvin went on his first extended field trip to the Boothbay Botanical Gardens with his fellow first-graders. I agonized about whether to go along to help his one-on-one Mary and to be there in case something went wrong since the gardens are nearly an hour away. My decision was made no easier when Calvin awoke slightly out of sorts, not eating well and with a sub-normal temp. But by the time the bus came he seemed better, so I sent him, wanting him to have the experience, needing some time away from him and wanting to avoid imposing my strict and controlling caregiver ways on Mary, who is wonderful. But the decision didn’t sit well with me.

Throughout the day, Mary sent me photos of Calvin from her smartphone. In nearly all of them he appeared lack-luster and fatigued, particularly in comparison to his bright-eyed, smiling peers. I began to doubt my decision further and became worried to the core.

The night before I’d described my worry, of seizures or other injuries Calvin might sustain, to my friend Arnd. I told him how it reminded me of those old western films where a cowboy goes in for a shave and the barber—the bad guy—presses the long blade hard into the cowboy's neck, but without cutting. I feel that pressure constantly—that ceaseless tension of worry. It almost never escapes me.

But Calvin came home from the field trip fine and the nurse took care of him while I tended to chores. Later, my friend Sarah and I made our way to Lilee’s Public House. We sat at the bar and openly lamented its impending closure, then wondered what we’d do without our most favorite watering hole and burger joint. She told me not to let it bum me out too much. She knew I had enough to worry about. But it bummed me out nevertheless.

At some point halfway through our Caesar salad I realized the cell phone was in my purse where I might not be able to hear it. So reaching down to transfer it to my pocket I realized it was ringing. It was the nurse. “Calvin had a seizure,” she said, and I could hear him crying in the background. “I’ll be right home,” I replied.

Sarah jumped off of her stool and told the bartenders, who know of Calvin’s epilepsy, that something was wrong with my boy. They simply told us to go. We grabbed our purses and ran out the door holding hands across the street. Approaching drivers must have seen the worried tears in my eyes and the urgency of our steps so they stopped in the intersection for us to cross.

Once home, Calvin was still crying. I can only think that after three minutes of electricity burning through his brain—during much of which he doesn't breath—he must have raging headaches or migraines that cause his grief. So the nurse had given him some rectal acetaminophen. And, as the dutiful boy he is, he took his six anticonvulsant tablets with yogurt and then a little liquid medicine in water before we laid him in his bed. He fell asleep as soon as his head hit the pillow, and Sarah went back to the pub and squared our tab.

Yesterday was day forty-seven. Today is day one.

Please share Calvin's Story to help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

Calvin during a seizure

no fun in the funhouse

Remind me never to go grocery shopping by myself on a Thursday night at seven o’clock on a pathetically sunny Maine day in May. It seems that’s exactly when my buffer of retirees shuffling down the aisles have gone home to eat supper, watch television and turn in while the mom’s with their beautiful, talented, smart, coordinated sons and daughters come out of the woodwork.

Last night was like a grocery store version of a father-daughter dance, only it was moms instead, and it wasn’t in an open gymnasium on squeaky hardwood floors with a rockin’ band or a DJ. We were in a bleak paved parking lot and the narrow Lenoleum aisles and checkout lanes of our grocer.

Around every corner the happy mother-child pairs popped out like in some twisted amusement park funhouse. I looked at these moms with their remarkable children as if peering into one of those warped funhouse mirrors; my sorry reflection was distorted and it would have been even more farcical if I’d had Calvin with me. We’d have had our own little grocery store sideshow: Calvin seizing or screaming or laughing hysterically at nothing and walking as if drunken. With one hand I’d prod him to stay upright as I fumbled with a basket or cart in my other.

There were mothers gently holding their son’s hands, daughters riding on the front of carts, babies sitting upright reaching for crackers, toddlers barely eighteen months old running down aisles actually holding things in their hands. Calvin can’t even do that, I thought, even though he is eight.

As I passed the alcohol aisle I wondered if I should grab a bottle of bourbon to drown my sorrows. But I don’t drink bourbon. Oh well. I left the market down and dejected carrying my peanut butter, yogurt, chicken thighs, cat food, cat litter, milk and avocados in the colorful Michelle Obama shopping bag a friend gave me.

I must not be getting out enough lately. Been hunkering down in the house writing on rainy days and out in the garden for hours on end weeding, pruning, raking, mowing, planting, edging, watering. I realized I must have been suffering a bit of the lonelies when I got all gussied up—put on a clean pair of jeans, a pretty shirt and earrings—simply to go to the supermarket by myself.

Just as I was leaving home—Calvin shrieking as the nurse fed him dinner—our friend Macauley stopped by with a bouquet of pink and yellow flowers. He knew Michael was gone again and so was hoping to cheer me up. We stood in the driveway talking about Calvin’s manic, antiepileptic drug-induced behavior and I wanted to cry, but didn’t. “I can’t imagine,” he said, “no one can know how hard it is but you.” I told him that that’s what my mother always says to me when she learns of my struggles. I added that hearing him say that is so much better than someone saying, "it will get better" or "there is a higher purpose that you just can’t see" or "God doesn’t give you more than you can handle." He knows I think that’s all a load of crap, and might even feel the same though he is an episcopal chaplain. We hugged. Then I drove off to the market to get my groceries and one gut-wrenching ride through a funhouse full of ridiculously healthy children and their mothers.

photo by Michael Kolster

to survive

I’ve recently gotten in touch with an old friend of the family. She had read Calvin’s story and reached out and told me about her own extraordinary son who has autism. She wrote:

“When he was first diagnosed at 3 years old, after he lost all of his language and stopped responding to his name, I cried every day for at least a year.”

I’ve been there, in some parallel universe, drowning in my own grief over my child’s messed up brain, his compromised health. Why him? Why me? But then again, why not me?

For three years, one day every week I’d walk across the tree-lined college campus, or drive through slush and ice to a big old pumpkin-colored house. At the top of a steep carpeted staircase I entered a cozy office and closed the door behind me. For fifty-minute sessions I sunk deep into a soft chair, my therapist’s kind face looking quietly and intently into mine.

Like all days, I surrendered to my despair as sheets of tears salted my cheeks, my voice trembling, sometimes words refusing to obey my mouth, halting all together in the tightening of my throat. Sometimes I thought I saw her leash her own motherly tears. Just by listening, and somehow understanding, she totally validated my sorrow—every day. She helped me so.

To survive I took things, not day by day like now, but hour by hour, minute by minute. Sometimes it’s all I can do, the immensity and weight of this colossal vertical precipice casting an infinite shadow over me from which I cannot escape. Everything is a reminder—Calvin’s screwed up brain but perfect body, his constant escape from my gaze, his screams, his poor balance, the mountains of medicines we must pour into his little body, his relentless seizures, his wordlessness.

But, I am not alone. I am only one of millions who have lost some part of themselves in a sea of despair over their children. But we buoy each other, we link arms and carry each other on the breeze. We understand each other.

Our children become what they will be, and in part because of us. Our children validate our sorrow and bring us immense joy all at the same time. Our children—they are extraordinary—and it is for them that we survive.

Originally published 05.09.11.

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photo by Michael Kolster

reaching others

A committed reader wrote the following message to me. It made my day knowing that my writing, in some small but significant way, is reaching—moving—others:

I had a dream last night that I was trying to comfort Calvin during a seizure. I wanted to let you know that your family has made its way into the unconscious of complete strangers and I hope that that can be a support for you as you continue through this journey.

—Julianna 

My thanks goes out  to those of you who have opened your hearts and minds to my cause of promoting epilepsy awareness and compassion for those who suffer its scourge.
 

Please help me reach others by sharing Calvin's Story today.

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

sleeping in the forest

I thought the earth remembered me,

she took me back so tenderly,
arranging her dark skirts, her pockets
full of lichens and seeds.
I slept as never before, a stone on the river bed,
nothing between me and the white fire of the stars
but my thoughts, and they flowed light as moths
among the branches of the perfect trees.
All night I heard the small kingdoms
breathing around me, the insects,
and the birds who do their work in the darkness.
All night I rose and fell, as if in water,
grappling with a luminous doom. By morning
I had vanished at least a dozen times
into something better.

—Mary Oliver 

photo by Michael Kolster

mother's day

Mother’s Day is often bittersweet for me—not a day to necessarily celebrate—what with Calvin’s disabilities and chronic epilepsy and my own mother’s slow decay from Alzheimer’s. So yesterday, as usual, I experienced a mix of emotions thinking back to the day when Michael and I learned that our unborn child had something terribly wrong with his brain; that for some unknown reason—despite the healthiest of pregnancies—he was missing a significant amount of white matter. Those days leading up to and including his birth were some of the most difficult days of my life and remembering them is painful.

Growing up, on Mother’s Day we all gave my mom funny cards, some store-bought, some not. My brother Steve once made her a wooden plaque in the shape of a shield sprayed green and gold with the words BEST MOM AWARD. She hung it on the kitchen wall for years. In junior high school shop class I made Mom a groovy plastic flame-colored envelope opener and a wood chopping block. She got flowers and plants and later Mylar balloons. Sometimes I drew her cards with birds and hearts and flowers that said, “I love you Mom.”

On Mother’s Day I know that none of these kinds of things will be mine.

But the first sound I heard yesterday morning was Calvin calling, “Uh-uh”—his way of saying “Mama.” I went to him, removed the netted canopy from his bed, unlatched and lowered the safety panel and crawled in with him. A huge smile spread across his face as he began showering me with hugs and kisses.

Cards and gifts will fade or be thrown out, get packed up into some anonymous cardboard box in the basement or be lost in moves. Flowers will wither, balloons will deflate or sail away, plants will one day die. But these moments with Calvin will last forever, if not always in my mind, then in my heart, in the marrow of my bones, and mean more than any bit of physical evidence I could glean from a son on Mother’s Day. At least that is what I tell myself.

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J.C. Leyendecker

mothers

My mother's mother, Sylvia

My mother as a child

Mom

Me and Mom

Calvin and me

brick and flower

My husband Michael and I watch a lot of movies, mostly at home. Not too long ago we saw one about a couple whose four-year-old son had died in an accident. The plot caught us off guard.

Throughout the film I found myself identifying with the grieving mother. I stepped into her shoes click-clacking down the grocery store aisle as she watched another mother argue with her child. I sat behind the wheel of her parked car as she mournfully watched young dapper couples headed to the prom, all neat and shiny and pressed. I saw through her eyes the boys behind the glare of school bus windows sitting straight and confident in their seats. I felt her tears run down my face as she watched happy moments of other parents and their children, her own having been buried with her child.

In a scene with her mother, who mourned the death of an adult son, she asks if the feelings of grief and loss ever go away. "No" her mother says, "but it changes." "How?" she implores, and her mother describes the transformation of grief and loss into something that can be held, carried, like a brick in a pocket that at moments you forget until you reach down in and there it still is. The reminder. The loss. The brick.

I hold a brick in my own pocket, for the things that are lost to me because of Calvin’s circumstances, the things that he can’t do now—ride a bike, talk with his dad, tell me his dreams, play with friends, read a story, run in the yard—and for the things Calvin will likely never do—live independently, go to college, have children of his own. This brick is heavy and rough, cold, bulky. But in my other pocket I hold a flower that is forever blooming—that belongs only to me. Its supple petals are the ivory silk of Calvin’s skin and its fragrance is beyond imagination. As time passes this flower changes like a chameleon, becomes more beautiful and interesting over time.  Most of all this flower serves as a reminder of the wonderful gift that is my son, and gracefully—thankfully—balances the weight of the brick.

Originally published 5.3.11.

jerry

Jerry doesn’t know everything—no one really does, except if they’ve lived it—but she knows a lot. She was there when we announced our pregnancy, then she and her husband, Ta, followed soon thereafter announcing theirs. She was there when Calvin was born six weeks early. She and Ta brought some yummy “outside” food into the hospital, but sadly couldn’t visit Calvin in the NICU since they weren’t family. Besides my brother-in-law who drove up from Connecticut (who also couldn’t see Calvin) they were the only ones to visit us at the hospital in the first few days after Calvin’s birth.

Jerry was there with Ta and their son Oscar and Joe and his twins at Nigel and Kellie’s when Calvin seized, when we called 911, when the children were ushered outside while the paramedics checked on our little blue boy then whisked him away in the ambulance. Calvin lay listlessly on my lap as I reclined on the gurney, Michael following behind in our car. I could see the others disappear around the bend as we drove away. Jerry was just down the road when, later, Calvin had a forty-five minute seizure as we sat at his emergency room bedside crying and kissing him goodbye.

Another time, she was there boasting a brown paper bag full of sushi after Calvin had landed in the pediatric intensive care unit again due to another scary incident of status epilepticus—repeated prolonged seizures. She was there with her hugs and her kisses and her offerings to do anything we needed—anything.

Jerry was there, holding me as I sobbed in her upstairs bedroom with my crying boy while the three March toddlers (Calvin was meant to be born in March) and their friends and parents were celebrating birthdays downstairs. She’s been there to see me struggle to give Calvin his seizure meds, struggle to feed him his food, struggle to get him to sit up, to walk, to stop crying, to stop poking his eye, to stop pulling my hair.

Yesterday, Jerry showed up in my backyard with a beautiful bouquet of lilies that she’d bought for herself but then decided, after reading yesterday’s blog post, that maybe I could use them instead.

No, Jerry doesn’t know everything about what it is like to raise a boy like Calvin, but she sure knows how to be a true friend (and Ta's not too bad either.)

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Jerry with her son Nico

wrong side of the bed

Some days I wake up on the wrong side of the bed and the world is grayish-black. Today is one of those days. I’m not sure if I feel this way because of sleep deprivation, or being jolted awake by Calvin crying, which is unusual of late, or because of the worry of an impending seizure when he surprisingly fell back to sleep after crawling into bed with him. Perhaps my mood is the reflection of the dark sky’s unrelenting rains, my aching body that has been trying to stave off illness, or maybe I simply need coffee.

Whatever the cause, my funk is exacerbated by little things like Calvin yanking my hair, or his inability to use a spoon even though we’ve been practicing since he was two. He was better at it back then. Now he can barely hold the spoon and when he does he flicks yogurt everywhere, gets only some of it into his mouth and the rest of it all over his face and hands. Then it goes in his hair and on his sleeve. Goddammit.

Further ruffling my feathers is Rudy the dog whose face practically sits in my lap as I try to feed Calvin, his hot shit-for-breath wafting up from his needy face, and Neko the cat who, after already being fed, jumps onto every counter attempting to lap up our residual warmed milk, devour pieces of Calvin’s sausage or slurp up his yogurt with her prickly tongue. You’d think she had tapeworms. Come to think of it, when we found her she did—the vet saw them crawl out while she was being spayed—but perhaps the seemingly innocuous twenty-five dollar pill that we gave her to annihilate them didn’t work.

But now the house is quiet, Michael having gotten a chuckle or two out of me—as he is thankfully known for doing—and having encouraged me to get some more shut-eye, before heading to his studio. Calvin didn’t have a seizure. Rudy and Neko are napping. My tummy is full of warm steel-cut oatmeal, almonds and coffee, the sky is somewhat brighter, albeit still pouring buckets, and the writing has lifted my spirits some. But I think I need to go back to sleep so I can wake up again—but on the right side of the bed.

get my gist

I've got a gist and it needs getting.

Lately Calvin has done a lot of teeth grinding ... morning, noon and night, though thankfully not while he is asleep—not yet, anyway. The hair-raising sound leads me to think about these other side effects that Calvin has suffered—most of which we continue to see—amidst the various antiepileptic drug treatments aimed at thwarting his seizures:

Status epilepticus, increased seizures, emergence of different kinds of seizures, developmental delay, respiratory suppression, sleep apnea and oxygen desaturation, insomnia, somnolence, lack of appetite leading to significant weight loss, difficulty swallowing, difficulty administering seizure medicine (Calvin has been known to hold drugs in his mouth for up to 90 minutes before swallowing) headache, dizziness, pain, extremely poor balance, asthenia, decreased muscle tone, visual disturbances, gastrointestinal upset, cognitive blunting, poor coordination, mood swings, mania, extreme hyperactivity, screaming, drooling, dangerously elevated liver functions, hypercalcification in kidneys that can lead to kidney stones and/or kidney failure, and self-abuse (eye poking, pulling his hair out, hitting his head with his hands, grinding his teeth.)

If Calvin is lucky he’ll outgrow his epilepsy, though the chance of that is slim to none, which means he—along with FIFTY MILLION others—will live a lifetime suffering these sorts of side effects—or worse—unless, of course, we find a cure. Get my gist?

Please share Calvin’s story and help bring us one step closer to a cure for epilepsy.
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riding bikes

I just got off of the phone with my mom. She's recovering from endoscopic retrograde cholangiopancreatography surgery, having had some bile stones removed. She'd been on some pain killers and some sleeping aids that were causing her to slur her words, so I asked her if she was drunk. "Not yet," she quipped, even though she has probably never been drunk a day in her life and hasn't had alcohol since being diagnosed with Alzheimer's nearly eleven years ago. After speaking with Mom I always get to reminiscing . . .

When I was a little girl I lived at the end of a long, sloping gravel road so I didn’t learn how to ride a bicycle until I was seven—no flat tarmac to roll along.

One day I asked my mom if she wanted to go for a bike ride in the nearby paved neighborhood, even though I had never seen her on a bike. But, delighted with the surprise invitation from her littlest of six, she happily agreed, so we grabbed our bikes and pushed them up the rocky road, then mounted them and sailed off down the quiet, shaded street.

After we had ridden a few blocks we turned right to coast downhill between the modest pastel homes, each with its small grassy front yard apron. Warm wind fingered through our hair, hers short brown and slightly quaffed and mine straight, long and thin, shiny and golden. Her white and red printed smock ruffled at her sides like a Spanish dancer in a drifting current. I closed my eyes and let go for a few seconds, sopping up sun rays on my thin tan arms. Clear tick-ticking of the freewheel offset the flat humming of our wide, slightly deflated tires rubbing against the hot pavement. I glanced back at my mom, so fair, plump and pretty, and she smiled. I smiled back. It was a perfect moment.

We leisurely passed a house where a friend was bouncing a basketball in her driveway. The girl called out to ask if I wanted to play. I looked at my mom questioningly and she just replied “okay” and continued on peddling around the square block for home. As she rode away out of sight I felt empty, sad and lonely. We never got to ride bikes together again.

I think of that moment a lot, miss her terribly and in my mind I go on bike rides with her and Calvin all the time.

Version originally published 1.23.11.

Mom

apogee and abyss

To have dived deep with a thousand fish,
sailed mile-high steering a flying ship;
To have body surfed at the Golden Gate,
and cut black diamond in the Matterhorn’s gaze.

To have crossed the Danube, Seine and Nile,
touched Grand Canyon rapids and Kilimanjaro’s smile;
To have reveled in some grand hotels,
and huddled in the darkness where Maasai dwell.

To have eaten dim sum on Hong Kong Island,
ostrich in Kenya and chitterlings in Oakland,
Edam in Haarlem and kimchi in Seoul,
tapas in Madrid and in Rio de Janeiro.

To have scaled the Great Pyramid’s sacred steps,
and descended into its black depths;
To have slept and dined in Turkish homes,
and swum among Grecian ruins.

To have been lied to, cheated on, discharged and laid off,
robbed blind, psyched out, picked on and put off;
To have been overworked, hard up, in debt and at risk;
To have covered up, undermined, gambled and lost it.

To have dropped out, boozed up, dragged on, passed out,
thrown up, miscarried, broken down and cut out;
To have lost a brother, scattered ashes of my dad,
now to watch my mother melt away into sand.

To remember all of these things that I’ve felt and done—
none have raised me up or dragged me down like my son;
my little boy is both despair and utter bliss,
Calvin is my apogee and my abyss.

photo by Michael Kolster

shit happens part deux

Often I wonder what difficulties parents of ordinary kids Calvin’s age grapple with on any given day. Perhaps they wrestle with lying, or bullying, or stubbornness, greed, mischievousness, sloth, argumentativeness, apathy. I started thinking about it when Michael and I were struggling with Calvin while changing his dirty diaper.

He’d had what we call a blowout ... and it was massive. We were headed home from a Sunday drive when the shit hit the fan, so to speak. It wasn’t hard to tell from the thick aroma filling the car—along with Calvin’s writhing mania—that we were in for some trouble. It soon became clear that the lava had flowed up and out the back of his diaper and onto the car seat. Somehow Michael managed to get him upstairs unscathed. But changing the diaper of a wiry, shrieking, three-and-a-half foot imp who is spazzing and flapping and tensing and trying to grab his poop-covered wienerschnitzel all at the same time is not easy. So Michael took the helm, held his arms fast and lifted his legs while I began swabbing the poop deck. But there was so much crap everywhere that we realized we’d have to hose him down in the shower.

After the water draining off of Calvin’s body ran clear we dressed him and tossed his soiled clothing into the laundry. When the cycle finished I transferred it to the dryer and found a few soaking turd-stained peanut halves in the bottom of the basin. I fished out the nasty nuts with a plastic bag and tossed them into the garbage. When I told Michael what I’d found he asked me, “Did you eat them?” to which I replied, “No, but Rudy might’ve,” knowing that one of Rudy’s favorite treats is cat dung.

And though we might not have to battle a naughty or misbehaved kid I imagine we are going to have to struggle with Calvin’s dirty diapers for a number of more years—perhaps forever—if he doesn’t begin to make more progress, learn faster, develop further. And a lot of that depends upon how many seizures he has and how many drugs he must continue to take in an effort to keep them at bay. Needless to say, that shit sure stinks.

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

Just so you know, that's a chocolate donut

welcome to my world

friday faves - the calvin quotient

Every so often I hear parents talk about how time flies and how quickly their little ones are growing up. My husband and I, on the other hand, continue to experience what I like to call the Calvin Quotient, which can be described, in a way, as an expansion of time.

Since just before Calvin’s birth we have been bombarded by an array of challenges dealing with his health, the medical establishment and simply learning to cope with the loss, grief, stress and complication that accompany having a child with disabilities, with epilepsy. Our lives quickly became jam-packed with appointments to see dozens of specialists for Calvin’s various health and developmental concerns. This frequent and regular exposure to unknown territory—both emotional and physical—and characterized as much by our fatigue as by our bloated calendar, felt as if we were experiencing in one year what another might experience in the course of several years or perhaps even over a lifetime.

Coupled with this intense, insane pace and its steep learning curve, and contributing to the Calvin Quotient, is the nature of Calvin’s development itself, which has always been painfully and utterly protracted. New skills have taken Calvin weeks, months, often years to develop, and at times have been all together lost due to seizures and drug side effects. One could say that Calvin is eight going on one or two.

So, while perhaps time flies when you’re having fun, and contrary to what one might think having read what I've just written, I have found great reward in Calvin’s quotient. That is not to say that I don’t wish every day that things were different. Of course I, like any parent would, wish that Calvin was healthy and better able to explore a child’s world of possibilities. But he is not, and because he is not I have learned a great deal, about things I'd never have imagined, in very little time. I have felt depth of emotion I'd never felt before. I can sometimes revel in spending hours upon hours watching him, touching him, listening to him (as long as he is not shrieking) and all the time in awe of him. We while away the hours in each others presence—in each others arms. No, our boy Calvin is definitely not growing up too fast.

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

Originally published 11.18.10.

the karma of pee

I’ll never forget the time that I peed on the starting blocks at Mercerwood Shores Club, remembering the incident in great part due to the fact that my siblings never let me forget.

I must have been seven or eight at the time. We six girls, in our various hibiscus and paisley printed nylon suits, had stepped up onto the slanted wooden blocks awaiting the man in white to fire his gun. But there was some sort of hitch. Perhaps the gun had jammed or a lane was missing its stroke-and-turn official; I can’t be sure. All I know is that—suddenly—I had to go ... and I had to go BAD. Maybe it was raw nerves or simply that I’d drank too much Kool-Aid or eaten one too many cherry popsicles before the race. No matter, I simply had to pee and I didn’t think I could hold things up further by excusing myself to go to the bathroom.

So I figured, what with all the commotion behind the blocks, nobody’d notice the stream of yellow liquid trickling down my leg. After all, the starting block was yellow. But I was wrong, and my brothers and sister made sure I knew it as soon as the race was over. I probably cried in utter humiliation and have never since lived it down, but hey, at least I won the race.

Then there was that time in ninth grade geometry. I was one of a handful of girls in a class of mostly boys who, quite simply, cracked me up. I remember most Bobby and Dean, the smart boy who had asked me to the ninth grade dance and I’d only declined because I’d already turned down another boy’s invitation so I didn’t think it would be nice to accept his. Well, Bobby and Dean and a few other boys had me in stitches most of the time, whispering and gesturing behind our teacher’s back as he drew triangles and parallelograms on the chalk board. This time Bobby said something that made me laugh so hard that I couldn’t help but open the floodgates—completely. When the bell rang and class was dismissed I glanced back at the puddle I’d left in the curved plastic chair. I clutched my aptly named PeeChee folder, which was covered in inky doodles, behind me so as to hide the wet spot on the seat of my pants, and very simply walked away.

And how could anyone forget the time that I peed another girl’s pants ... while she was still in them, no less. To be clear, we were both in them. My friend Pam and I had somehow procured a ginormous pair of painters’ overalls and figured it’d be funny if—before swim practice—we’d get into them together and become the two-headed girl. So, we climbed in back-to-back and buckled ourselves in forgetting to consider that we wouldn’t be able to bend our legs. The pool deck was down a long, steep flight of cement stairs. So with our teammates’ help we hilariously teetered down the stairs straight legged like a walking vector compass. By the time we reached the pool deck we were in hysterics and I just couldn’t help myself from wetting my (our) pants. You should have seen the look on Pam’s face when she realized what was happening, and she squirmed and hopped like a jumping bean, taking me with her right into the pool.

Now, pretty regularly, my eight-year-old son Calvin wets his pants, his pajamas, his bed and sometimes his car seat, no matter what kind of precautions we take. It seems each day I’m dealing with a leaky situation, water-logged diapers, drenched clothing. So I guess what I’m getting at is that there must be some sort of karma of pee and, if there is, I’m the living proof.

friendship

The glory of friendship is not the outstretched hand, not the kindly smile, nor the joy of companionship; it is the spiritual inspiration that comes to one when you discover that someone else believes in you and is willing to trust you with a friendship.

—Ralph Waldo Emerson

Calvin and our friend Ellis