two big babies

On the end of the phone a man’s stern voice asks, “who’s this?” I reply, knowing it’s my brother Matt, “who’s THIS?” Then he tells me that I should identify myself, so I say that I’m his worst nightmare. “Nope, my worst nightmare is a dirty diaper,” he quips, meaning our mother’s.

He went on to tell me, with a half-pathetic chuckle in his voice, that he found shit in Mom’s bathroom sink the other night, that she’d tried to stuff it down the drain. After the initial amusement, all I could say was a pitiful, “Oh, Matt.”

It seems that Mom had a bit of a setback—if you can call it that considering Alzheimer’s is a progressive disease—since returning home from a holiday trip with my sister to visit my brother Scott and his family in Tucson. “Day after she came back she couldn’t get out of the bed,” he added. My heart sunk and I could feel soft furrows gathering in my brow. He suggested I come for a visit within the next several months while she still has traces of decent cognitive and physical function.

I spoke with my mom on the phone the next day. With some coaxing she remembered my name. Her voice was lower—slower than usual—when I asked her how she was feeling, to which she said fine. “What’s the weather like, Mom?” Stumbling over her words, she said something like, “I can’t tell because they aren’t there.” I figured she must have meant the windows. “What’s not there, Mom?” to which she answered, “The lions.” I’d noticed recently that she’s been having more difficulty describing things, but now it appears as though real confusion is setting in.

Matt and I had compared caregiver notes. I told him that Calvin could walk, by himself, up the stairs holding the banister, though slowly, not consistently and not without a spotter since he falls so frequently. Matt seemed impressed. He described how he and his wife Stacey had installed some railings in their home for Mom’s safety, but that within a year she might be in a wheelchair. “Calvin’s goin’ up while Mom’s goin’ down,” he said. They’re like two big babies, I thought. We feed and clothe them, help them walk around to keep them fit, help them into their jammies, tuck them in and kiss them goodnight. I told Matt I loved him and thanked him for taking care of mom, and that I wished there was something I could do to help. He offered that he couldn’t help me with Calvin either, then added something like, “You should thank Stacey because she’s a goddamn saint for what she does and has to put up with,” and, because of Calvin, I know what he means. At least I think I do.

I thought about the novel Times Arrow by Martin Amis in which life’s trajectory is backwards, the main character getting younger with each passing year—not unlike Benjamin Button—and eventually dying when he enters his mother’s womb. Yep, Mom’s on her way back to the womb of the earth, I think. I hope, at a certain point, she goes there fast.

Mom used to talk a lot about how she didn’t want to live once she started forgetting things, people. I hope to hell she doesn’t have to suffer a prolonged period of confusion and unhappiness. I thought about the autumn of 2010 when my sister and I took her on an Alaskan cruise. She’d snuck to the bathroom in the middle of the night, somehow avoiding the booby-trapped scarf and umbrella we’d rigged to wake us up in this event. She had clogged the toilet requiring the plumber to visit our room at two in the morning. Mom, in utter shame, whispered to Caron, “I just want to die,” then luckily proceeded to forget all about it.

Just after I got off the phone with my mom, Calvin’s bus pulled up. Cindie, his driver, asked how I was doing, noting my sorrowful face. I mentioned my mom and how she’s deteriorating. Idling the big empty bus at the curb, Cindie told me that her mom suffers from Alzheimer’s, too. I shouted over the diesel engine that I hope my mom goes quickly, just like she’d always wished, and that (gesturing) maybe I’d need to give her a swift kick in the butt off of some cliff one day to save her from the misery she has always dreaded. Cindie said something like, “Let me know when, I’ll bring my mom and we’ll do a twofer.” “Yeah,” I said, “like Thelma and Lousie,” and we both laughed miserably, blew each other kisses and she sailed off down the street.

compassion is a verb

Compassion is a verb.

 ―Thich Nhat Hanh

Lying in bed last night I got to thinking, the tangled lattice of gently swaying pines outside our window is good for that—mesmerizing. I began to contemplate what it is that motivates people to give charitably—or not to.

I wonder if people give to causes like cancer research, world hunger or disaster relief because they know someone who is personally impacted? Do they give because they know their friends give? Do they give because they truly want to make the world a better place? Do they give because they are compassionate, selfless and loving? Do they give because of their faith, their conscience?

On the contrary, what makes able people decide not to give? To ignore the meager tin cup with its begging coin slot sitting on the grocer’s checkout counter—you know—the one with the photo of the sick child? To walk unflinchingly past the homeless woman asking for nothing more than pocket change or food? What makes someone ignore appeals for aid when they’ve got ample resources to help? Is it fear? Avarice? Mood? Judgment? Apathy? Righteousness? Ignorance? Though, regrettably, I myself have neglected to give when I could have, I still can't claim to know the motivation of others. And although I am not a religious person, and as silly and cliche as it might sound, sometimes I find myself reflexively asking, what would Jesus do, albeit assuming he had sufficient funds?

The only thing I can figure is that those who choose to give charitably are either born with the capacity for compassion written deeply within their DNA or they have perhaps suffered some hardship of their own that has allowed them to more easily step outside themselves and to truly, deeply understand what it is to fulfill others needs; to be selfless enough to give without expecting something in return. Some call these philanthropists heroes. Some might call them saints. I call them exemplary, kind, noble.

In my campaign to promote awareness of epilepsy’s prevalence and scourge—and in turn to raise funds for research into a cure—I’ve been deeply moved by the charity of some. A woman I barely know, perhaps not at all except for her name and the fading memory of her beautiful teenage face, made a generous donation to the cause. In turn, a friend of hers kicked in the same amount. An acquaintance, who hasn’t displayed the slightest awareness that we even have a child—much less one who is very ill—gave a hundred dollars. Old friends, new friends, scores of compassionate folks living in our community have donated. People who’ve never met Calvin—who’ve never laid an eye on us—have given liberally. All have donated to help free our boy from the lash of seizures and the crush of drugs that continue to haunt his days and nights, and we are deeply grateful.

Yes, I think the Buddhist monk Thich Nhat Hanh is right; compassion is a verb. If you can't think of a reason not to give during this brief campaign to raise funds for epilepsy research and celebrating Calvin's eighth spin around the sun (which is a no small accomplishment) then, can I humbly ask, will you?
http://www.calvinscure.com

a thousand words

During this brief campaign please donate to CURE epilepsy research at: http://www.calvinscure.com

margot, lisbeth and calvin

Margot

By Madeline Curtis, age 14, Margot’s sister

I wish there was a cure. The pills are supposed to work, and maybe they do—on other people. But they don’t work on Margot. The diet didn’t work, either. The fancy diet, the one that led to so much stress in our house, didn’t work. The seizures just keep coming back, and my little sister, eight years old, has to endure them. I wish there was a cure so that Margot, who can’t even speak or walk, wouldn’t have to struggle so much. I wish there was a cure, because I’m tired of all the new medicines that show up in the cabinet above the sink. I wish there was a cure, because I hate the helplessness I feel, watching her limbs freeze and her eyes roll up into her head. I wish there was a cure, because I want all of the people who carry the burden of epilepsy to feel relief.

Margot

Lisbeth

By Martha Miller, Lisbeth’s mom

Write about lost love, my professor says. All I can think of is Lisbeth, and how I lost the little girl she was that day in sparkling summer. She'd been ill and was feeling better, then awoke that morning saying, “Mommy I don't feel good.”  I laid her on the couch and gave her some Tylenol. Twenty minutes later it happened: she was grey, her eyes rolled back, the whites of them now yellow, moist, a faint clicking in her throat. Her body was stiff, jittery. I yelled to my husband Garry to come. “Call 911,” he said, and somehow I did. Waiting on the front steps for the ambulance the word EPILEPSY kept playing in my head. The ambulance arrived and the men carried her out. Garry rode with her. I followed in our car praying, “Oh God, please, this is not how I want her to grow up." In the emergency room Lisbeth laid on the stretcher. They'd cut her pink summer shorts in half, shoved tubes down her throat. Garry leaned over her tiny body, her perfect pink six year old body, her blue eyes, now shut. What (the Hell) was happening? I wanted to turn and run away. Garry saw it in my face and said gently, “C'mon Mart.” I walked to the cot where she lay, and I began to sing to her. I sang all the lullabies I'd sung to her when she was a baby. I knew what my job was now.

Lisbeth

Calvin
By Christy Shake, Calvin’s mom

Our nightmare started when Calvin was eighteen months old. He had spiked a fever, so we gave him some acetaminophen and called our local hospital. The doctor assured us that we had nothing to worry about even though I’d told him Calvin had serious neurological deficits. Within mere minutes of hanging up the phone Calvin suddenly cracked like a whip into an arch stiff as a steel rod. His eyes bulged and his lips pursed as if drawn up with thread. My husband Michael gathered him up, instinctively—worriedly—rocking him back and forth as if to jostle the seizure out while I white-knuckle-called for an ambulance. “My son is having a seizure,” I blurted, “he’s not breathing—he’s turning blue!” The walls began closing in on me. Sounds morphed and muffled. Everything around me looked hazy—blurred—as if in a cloud, except for my boy who remained in sharp focus. Cradled in Michael’s arms, now jerking rhythmically—violently—Calvin turned ashen like a corpse and his eyes rolled back into his head. Time stood still as in a dream. I wasn’t sure if Calvin was alive even though his convulsions persisted—I couldn’t find a pulse.

My next memory is of the cold hard edges in the ambulance, the sterile, sickeningly gray vinyl benches. My tiny child lay in the center of a sheeted white gurney—his eyes now vacant and still—staring up in a catatonic gaze at the bluish light in the ceiling. I feared he might remain that way forever because of the seizure, or worse—die. Little did I know then that some kids do.

Calvin

Margot, Lisbeth and Calvin are just three of as many as three million Americans, and their families, who suffer from epilepsy, and who likely will not be released from their misery until a cure is discovered.

During this brief campaign please, show your compassion and donate to CURE epilepsy research at: http://www.calvinscure.com

friday faves - if it were mine

When I was in high school I worked as a lifeguard at several community pools. It was at one of those pools when I first encountered a child with Down syndrome.

I don’t remember his name, and his age was unclear, but I suppose he was a teenager. He'd appear often on the pool deck, drop his towel, whip off his shirt and take a running dive—more like a painful belly-flop—into the water. He’d swim flat-out with windmill arms for about ten lengths before hopping out, beet red. Then he’d dry off, don his shirt and exit as swiftly as he had arrived. I have thought of him often over the years wondering what his parents were like, who his friends were and what he liked to do besides swim.

Throughout my college years I continued to meet a handful of other youths and adults with Down syndrome, mostly at grocery stores, bagging my food items or retrieving carts with what seemed to me great care and pride. I happily engaged with them if they showed any interested.

And while watching the film Fried Green Tomatoes nearly twenty years ago I was quite moved during a particular scene. In it, Jessica Tandy plays Ninny Threadgoode, an old woman living in a nursing home who, at one point wearing a bright smile, talks about her child in a soft southern drawl:

When he was born, the doctor said it would be best if I didn't see him. He said his mind wouldn't develop past the age of five, and I should put him in an institution, because the burden of raisin' a child like that would be too great.

She went on to say:

I smiled at him and I asked for the baby. Why, from the minute he was born, Albert was the joy of my life. The Lord's greatest gift. I don't believe there was a purer soul on this earth. I had him with me til' he was 30. Then he went to sleep and he didn't wake up. Sometimes I can't wait to get to Heaven to see him again.

That scene left an enduring impression on me though it would be years before I had a child of my own.

My observations and encounters—and subsequently the film scene—came together into a kind of mosaic that compelled me to ask myself, even as a young person, what if I had a child with Down syndrome? I wondered if I might become depressed, fall into a downward spiral and plunge deep into a black despair. Might I run away or kill myself? My answer was always a resounding "no."

No, I wouldn't. I'd remain the hopelessly optimistic person I have always been. I would prove to be a wonderful mother to this child. He would become the light of my life and I would help him realize his full potential. I would love him for all of his features unique to him.

Thinking back, I am thankful that these questions occurred to me. I have no idea whether my peers pondered these same kind of realities. Calvin doesn't have Down syndrome, but was I having some sort of premonition about him? I don’t think so. My query might be more adequately explained by the fact that I have always thought it paramount to consider the life of another and wonder how it would be if it were mine.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy during this brief campaign by donating at: http://www.calvinscure.com

This post was originally published in December 2010.

discover your world

Your work is to discover your world, and then with all your heart give yourself to it.

—Buddha

photo by Michael Kolster

other

Everywhere I go I am reminded of how much Calvin is—of how we are—different, “other.” In the cafe or grocer little children peel off of their mothers’ sides to come and stare—front and center, bug-eyed, sometimes sullenly—at my boy. As a kid I would’ve responded sarcastically, “take a picture, it lasts longer.” But now, I simply gawk back at them just as curiously as their little, serious faces peer at Calvin. They’re probably thinking, what’s his problem? A kid once asked me that in the neurologist’s waiting room.

At twilight several weeks ago I stopped at the main intersection in the middle of town. Calvin was in the back seat pulling his usual shenanigans; biting his shoe, poking his eyes, happily flopping his arms to the music like a chicken. I noticed a driver idled in the SUV next to us ogling Calvin and looking vaguely repulsed. I gazed back at her for what seemed like five minutes before she noticed me and then, when I caught her glimpse, I smiled. She didn’t; just stared back at me seemingly locked inside some paralytic, perplexed state of shock or disgust. Her handsome, oblivious teenage boy sat in the passenger seat with headphones stuck into his ears. Somehow, I felt sorry for her as she drove off.

Then there are those who see us and smile. Some watch us fondly from inside the grocery store, Michael pushing a cart while I do damage control holding Calvin’s hand or harness as he teeters drunkenly around displays of fruit and bottles of wine. They watch us bring our booty to the register where the clerk asks if Calvin might like a sticker and I graciously decline knowing he’d just try to eat it. They watch us move hand-in-hand through the wide automatic doors cheering Calvin along as he pigeon-toes across the parking lot cawing like some bird. They watch us load his screeching-drooly-spastic-sac-of-potatoes body into the car, buckle him up and kiss him. These precious few know something. I can see it in their compassionate eyes; hear it in their kind words. They’re the type of people you just want to embrace, or adopt and bring home, set them up in their own room with a warm blanket and a cup of tea. Often they’re old with leathery wrinkles and moist, red eyes. Some are young and vibrant, oozing sparkling energy like a dewy chrysanthemum or a sunbeam. All of them touch me with their kind gestures that often bring a familiar sting to my eyes and a thickening in my throat. I see the same in Michael’s watery eyes sometimes, and it makes me love him that much more.

I’ve always felt different from the rest of my own family in most ways. Michael too. You know, the black sheep, the weirdos. I guess I’d say we dance to the beat of a different drum. And we like it that way. It feels good to see the world in somewhat unconventional ways, to see life through a sort of prism with all its refractory qualities, angles of light and color, shimmering, bending, dark at times. And now, with Calvin, life appears remarkably unlike anything we’ve experienced before. We’ve gone through another metamorphosis; see life through yet another filter, that—if our child were healthy, normal—we might never have known. Each year living with Calvin strips back another layer—like some withered bark or faded, brittle skin—of what we thought we knew but didn’t. Though life is hard it’s always new and changing—we are changing—and it feels good, right. And in great part due to Calvin, we know and live “other” and embrace it.

There is a beautiful scene in the film Tree of Life, set in 1950s Texas, where a mother takes her young sons to town. Crossing the street behind her the boys pass a swaggering drunken man who tips his hat to them. The brothers mimic him laughing, cutting zigzags and bumping into each other. Another stumbling man approaches, his body queerly arched to one side, his arms drawn up to his chest like a squirrel, dragging one foot nearly on its ankle. They stare but do nothing, noting the peculiar but sad circumstance of his disability and, perchance—in their minds—noting the sorrowful state of the drunken man. Lastly, the brothers skirt past a dirty, disheveled man in shackles. Another, their mother lifts a drink from her thermos to his lips. One son asks in a whisper, perhaps to himself, can it happen to anyone?

Yes, it can. I know. It can happen to good people and bad people, to adults and children, to saints and heathens. We can all end up living the life of “other”, and at times we’ll be singled out, gawked at, mimicked and shamed, but by those who sadly, and for whatever reason, don’t have the sublime ability to look through life’s beautiful prism and see—embrace—the poignant beauty that is “other”.

Please share Calvin's story. During this brief campaign please donate to epilepsy research for a cure at: http://www.calvinscure.com

photo by Michael Kolster

happy. sad.

things that make me happy

clear blue skies. barefoot husband in jeans. calvin’s giggles. fresh cut pineapple. a good day of writing. orchestras. a beautiful voice. smart, sexy president. calvin getting off the bus. home made spaghetti. cheese. dirty jokes. green things. endorphins. night out with the girls. night in with the boys. a kind word or deed. spring coming. parties. talking with my mom. funny people. rudy the dog. our home. a good book. calvin.

things that make me sad

sick children. hungry people. burnt toast. wasted days. drugged up kid. war. selfishness. being misunderstood. worry. indifference. not knowing what is hurting calvin. mom’s alzheimer’s. long winters. limitations. seizures. drugs. seizures. drugs. seizures. drugs. tax evaders. certain music (that makes me feel good, just sad.) apathy. missing dad. calvin.

bird by bird

A few years ago my sister gave me a beautiful strand of cloth birds she’d brought back from Asia. The dozen or so resemble hummingbirds and are hand sewn, cut from colorful felt. Tufts of yarn serve as wings and tails—beads for eyes—and each is wrapped in a metallic gold ribbon harness. The cord itself is adorned with various beads and shells and a tiny brass bell tied at the bottom tinkles happily when disturbed. The string hangs from a tack beside Calvin’s bed just to the right of the light switch. When I turn the light on I sometimes jingle the bell—inadvertently or not—and it makes me smile.

When she gave it to me I pondered its symbolic meaning. At first I imagined it like a calendar, similar to the bird-themed oblong felt ones that my deaf, autistic uncle embellished with sequins then sent to us every Christmas when I was a kid. And then I thought of the book Bird by Bird, by Anne Lamott, that I’d read several years ago and from which this passage comes:

Thirty years ago my older brother, who was ten years old at the time, was trying to get a report on birds written that he'd had three months to write. It was due the next day. We were out at our family cabin in Bolinas, and he was at the kitchen table close to tears, surrounded by binder paper and pencils and unopened books on birds, immobilized by the hugeness of the task ahead. Then my father sat down beside him, put his arm around my brother's shoulder, and said, "Bird by bird, buddy. Just take it bird by bird."

We have to think of our life with Calvin in much the same way, taking each day, each challenge, each disappointment, each monotonous, worrisome, fearful minute one by one. To do it any differently would be too great a task, too daunting.

Sometimes I look back at past calendars. In any given month a dozen or more days are blocked with fading orange highlighter—like a quilt—noting Calvin’s seizures, marked with large black dots flagging tonic-clonic ones or strings of heavy “Os” for partial complex ones. Following are smeared inky descriptions of each; how long, how violent, if he stopped breathing, if we had to give him the emergency rectal Valium, if we called 911, if we went to the ER, if he was transported to the pediatric intensive care unit in Portland. Each month is stained with bright green or yellow swathes and scarred in sharp black letters tagging changes in Calvin’s multiple medications, doctor’s appointments, blood draws, illnesses, therapies and nurses’ visits.

And when the enormity of our situation becomes too much to bear—when I don’t know if I can change another dirty diaper, hear another manic scream, struggle to give another medicine, agonize over another seizure, endure another sleepless night—I run my hands down that colorful strand of plump cottony birds and think to myself, bird by bird, Christy, bird by bird.

more of the same

I’m sitting here just before eight a.m., about an hour after having given Calvin his seizure meds. Three tiny white pills, two and a half salmon-colored tablets and two and a half powder blue ones go down the hatch. He mostly refuses his honeyed Greek yogurt lately so instead I sink the pills into a few bites of applesauce that I must coax into him. The damn drugs have totally messed with Calvin’s sense of taste, appetite or both, and he’s become a little string bean of a boy.

It’s five degrees outside, the sun just coming up over the tops of the trees, blobs of snow still perched like little white caps atop thin, curled-up rhododendron leaves. Calvin wouldn’t eat—again—so we put him in his johnny-jump-up to spin at his heart’s delight. I can see the drugs gradually wash over his brain turning him from a happy, almost manic, kid to one lost in some sort of pathetic oblivion, slouching floppily in his jumper. He stares at his hands or at the blue felt elephant rattle clipped to the jumper’s strap. Usually he likes rattling it though mostly he prefers chewing it until it’s sopping wet. Some mornings, like today, he appears mesmerized by the plaid patterned fabric of the plush toy, glaring at it in the grasp of his motionless, red hands. I often wonder if this behavior is some sort of seizure, so I rise up, go to him and try for a response. Sometimes he lifts his head with a faint smile while at others he keeps his chin buried in his blue velour robe as if unaware of my presence.

But then, especially when I put on Joni Mitchell’s Court and Spark, he perks up, spins, marches in place, yanks off his slippers and tries to eat them. “No slipper sandwich,” we say, whisking them out of his choppers hoping he hasn’t already taken a chunk out of the rubber sole or spongy upper. He rubs his forehead and eyes with the heel of his palms, kicks the wooden floor hard with his foot. Because of the drugs a constant film of drool coats his chapped chin, so much so that we must slather it in greasy Aquaphor and wrap his cute little bird neck in rolled-up cotton kerchiefs to keep his shirt from soaking.

I wonder what today has in store for us. More of the same, I think to myself, more monotonous traipsing around behind Calvin as he pads throughout the house in search of nothing, like some drugged up mouse in a maze trying in vain to find the cheese but never getting there, just retracing the same steps over and over without making progress toward the goal. If only he’d sit still and let me read him a book like he used to before these drugs. If only I didn’t have to tell him not to bite things every few minutes. If only he could walk around and play by himself so that I could attend to things like chores or reading or writing or cooking. Hell, I’d even be happy plunking him down in front of a television if he’d watch it, and I can’t stand TV.

Instead, we’ll be joined at the hip or, rather, shackled together like a couple of jailbirds marching endlessly around a walled-in cell block, no escape in sight. The only way out of this prison of seizures and mind-numbing drugs is a cure that, miserably, we simply don’t have.

Help bring us one step closer to a cure for epilepsy. During this brief campaign please give what you can to epilepsy research at http://www.calvinscure.com

lauren's story

Written by Susan Axelrod

Far away from here, in another part of the country, lives a beautiful young lady who lights up a room with her smile and personality, despite the impact epilepsy’s had on her life over the past [30] years.

She is my daughter, Lauren.  At the age of 7 months she began having uncontrollable seizures for no known reason. I don’t know how to describe to you in the few minutes I have tonight what epilepsy has meant to her and to my family.

If I told you about the day our lives changed forever, when I found her lying blue and limp in her crib after what I quickly learned was a night filled with seizures, that would only be a beginning.

If I described watching her tiny body go rigid and convulse, her eyes rolling back in her head and frothing at the mouth—time and time again—that still wouldn’t do it justice.

If I told you about the 20 different drugs that didn’t work, their horrendous side effects; countless hospitalizations and medical procedures, the brain stimulation, the special diets, the five hour neurosurgical procedure during which they bored seven holes in her skull, implanted electrodes directly onto the surface of her brain and withdrew medication to bring on seizures, all to determine whether or not they could perform a corrective surgery—which they eventually concluded they couldn’t—that still wouldn’t adequately describe it.

If I told you of the days Lauren would suffer over 25 seizures a day, waking up in between only long enough to feel another seizure coming on and scream out in terror  “Mommy, make them stop” and I couldn’t do a thing . . .

If I told you about watching her deteriorate cognitively as the seizures wreaked havoc on her developing brain . . .

Or, if I told you how it felt the day five years ago when she moved into a supported living arrangement because she cannot live independently due to the brain damage caused by all the seizures … I still don’t think I would have adequately described the horror of this disease and what repeated and uncontrollable seizures do to rob children of their potential, and parents of their dreams and hopes.

Epilepsy is the second most common neurological disease. For far too long, it has been misunderstood as a treatable, benign condition.  Three million Americans are affected; many of them children; many severely impacted. Tens of thousands lose their lives every year.

Two nights ago I received a late night e-mail from a mom I’d met whose five year old son has just begun to have seizures. She wrote:

We just returned from a week at Children's Hospital . . . again. This time, my son started cluster seizures and it took days to get it under control. Now we are living with some pretty bad side effects—vomiting, metabolic acidosis and erratic behavior, to name a few. It is amazing how little could be done to stop Evan’s seizures . . . It took six days and he spent several days awake for only an hour or two. I wish our story was unique, but I know it is not.

I receive these emails and calls all the time. I’m terrified for this family and for Evan’s future.  It’s unacceptable that today, 25 years after my daughter was born, we still don’t have answers to this age-old problem. It’s unacceptable that so very often we can still only watch helplessly as young lives are devastated.

. . . we have a very long way to go in our understanding of this disease and in the search for a cure. We must continue this fight on behalf of all children, like Lauren, who lighten up rooms with their smiles. They deserve much better.

Please share this story. Help bring us one step closer to a cure for epilepsy during this brief fundraising campaign. Donate at: http://www.calvinscure.com

Susan and David Axelrod with their daughter Lauren

friday faves - kids and dogs

Every so often I encounter certain canine enthusiasts who tell me that having a dog is like having a little kid. All I can think is that they must not have kids. We have both, our son Calvin and Rudy the dog, so I can honestly say that having a dog is not much like having a child, especially one like Calvin.

On weekends, when Michael, Calvin and I go to the coffee shop to leisurely sip our lattes, we prefer not to tie Calvin up to the tree outside right next to the slimy bowl of water. We'd rather have him snuggle inside with us. And although it would be damn convenient, I don’t leave Calvin at home all day by himself, and while shopping for groceries, I opt not to leave him in the car, even if the windows are rolled down. Sometimes I dream about how easy it would be just to scoop out some kibbles and throw Calvin a bone, but you'll never find me succumb to that. And although it might be advantageous—particularly on a tight schedule—to scrub Calvin down every few months, we give him a warm bath each night especially since his hair doesn’t clog the drain.

Rudy the dog, on the other hand, doesn’t seem to mind avoiding the bath, and is very good at telling me when he has to pee or poop. When we let Rudy outside to do his business we don’t bother bundling him up in a down coat, scarf, hat, mittens, wool socks and snow boots, because that’s a major pain in the neck. And with the amount of laundry we do in our house it’s a blessing none of it is Rudy’s because he likes to roll in crap. Rudy is a good sport, though. He doesn’t mind sleeping on the floor or eating the same food ad nauseam, but he really doesn’t like it when I brush his teeth.

We’re all lucky that we don’t have to give Rudy medicine ten times a day, like we do for Calvin, and he hardly ever gets sick. If he does—and it’s usually because he ate something unspeakable when we weren’t looking—we just wipe it up, he’s fine, and we go on with our business. One of the best things about Rudy is that we don’t have to change his stinky diapers. And the best things about Calvin are his smiles, his giggles and his hugs.

Nope, kids aren't much like dogs but they're both pretty great to have at home, to play with and to love.

This post was originally published December 2010.

of all humanity

An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.

—Reverend Dr. Martin Luther King, Jr. 

Image from the Library of Congress

lisbeth's hurt

This morning I woke up to the unsettling howl of an ambulance siren. Calvin has been carried away in one more times than I’d like to remember, so the sound has a sort of sick, Pavlovian effect on me and I find myself wondering what unfortunate soul is heading to the emergency room and why.

Downstairs, in the dark of morning I sat before my laptop drinking coffee and looking at updates from friends on Facebook. I was sorry to see that my friend Martha’s daughter, Lisbeth, had another bad fall during a seizure and sustained some nasty head injuries.

Lisbeth, who is thirty, continues to have seizures despite taking several anticonvulsant drugs, just like Calvin does. I am in awe of her mother and father's strength and tenacity having had to deal with this wicked affliction for so many long years while it continues to batter their beloved daughter—day in and day out—and all because we don't have a cure.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. Give what you can to CURE epilepsy at http://www.calvinscure.com

Sweet Lisbeth, photos by Martha Miller

remembering dad

I was sound asleep in some upper-floor hotel room in Manhattan. In the darkness the telephone rang. I startled, then looked at the clock. The glowing green numbers read 4:30 a.m. I knew who was calling and I knew why. My dad had died.

That day was sixteen years ago yesterday. The last time I’d seen Dad was at Christmastime. I have a blurry photograph of him sitting in a chair, my little nephew Max running past with wrapping paper or a new toy, my sister-in-law Julia in the background. Dad looks like a zombie, his vacant, black-morphine-eyes and puffy-chemo-face staring off—expressionless—into some diaphanous cloud that is his living room.

My mom and siblings had sheltered me from his two trips to the hospital while trying to battle pneumonia. Both times he’d won the fight, I found out later, after he’d returned home. I remembered the time I’d seen him that previous Thanksgiving, trembling in excruciating cancer pain, humped over the couch after Mom had given him a morphine suppository. I’m not even sure if he was aware I was stroking his back and holding his hand, the cancer and chemo having buried him alive.

I remember another famous photograph of Dad perched at the top of a tall tree he’d limbed up. He was wearing crampons, had one boot stabbed into the trunk he was holding with a gloved hand, extending his other limbs as if in a mid-air jumping jack and wearing a big smile. I wonder if that was the same time he fell, still grasping the chainsaw on his way down and slicing both knees with it. Bloodied and in pain he initially refused going to the hospital to get stitches in the long ragged gashes. It took three of us—my mom, my brother Alan and me—to convince him he needed to go.

It’s still difficult for me to understand how this man—this pillar of strength—had died at the mere age of seventy. I always described him like Clint Eastwood, only better—tall, slender, ruggedly handsome with a washboard stomach even in his twilight years. Dad was a hero who helped save lives and expensive equipment at Walker Air Force base in Roswell when a plane had crashed. He, a Naval Academy graduate who’d finished in the top ten percent of his class but had failed the pilot’s eye exam, became a civilian who galvanized a team of servicemen to push aircraft away from a speeding river of gasoline and an oncoming wall of flames. It was in all the papers.

He was my hero, my dad, a wickedly intelligent guy, amazing athlete, dedicated coach, swim meet official, funny man, disciplinarian, joker, ham, great friend, and dessert-lover extraordinaire. My friends loved him, though at first they were scared of his imposing form.

I think of Dad every day—like to dream of him with Calvin. I envision the two of them horsing around outside together like he and I used to do—throwing a ball, wrestling, catching frogs and snakes and worms and butterflies, chasing each other under azure skies and spraying each other with the hose—the sun shining on their faces—holding hands, eating homemade ice cream and licking their bowls just like we used to do.

I miss you Dad ... all the world misses you.

Donald Murray Shake February 20th, 1925 - January 16, 1996

lost love

Written by Martha Miller

My heart is beating
fast
scared.
Write about lost love
he says.
All I can think of
is Lisbeth
and how
I lost the little girl
she was
that day
in sparkling summer.
She'd been ill
and was feeling better
then awoke
that morning
saying
Mommy
I don't feel good.
I laid her on the couch
and gave her some Tylenol.
Twenty minutes later
It happened.
She was grey
eyes rolled back
the whites of her eyes now yellow, moist
a faint clicking in her throat
her body stiff
jittery
I yelled to Garry
to come.
Call 911
he said
and somehow
I did.
Waiting on the front steps
for the ambulance
the word epilepsy
playing
in my head.
The ambulance.
The men carrying her out.
Garry rode with her
I followed
in our car
praying
oh god
please
this is not
how I want to grow up
The ER.
Lisbeth
on the stretcher
they'd cut
her pink summer shorts
in half
tubes
down her throat
And Garry.
leaning over her tiny body
her shiny white blond body
her perfect pink six year old body
her blue eyes
shut.
What
(The Fuck)
was happening
wanting to turn and run away
Garry saw it in my face
and said
gently
c'mon Mart.
I walked to the cot
where she lay
and I
began
to sing to her.
I sang all the lullabies
I'd sung to her
when she was a baby.
I knew what my job was
now.
Years later I would dream that Lisbeth's head

was just an egg
an egg that I held in my hand.
The doctors came in and said
that they
could re-attach her head

to her body
but
I saw them look at each other
worriedly
doubtfully.
I saw them do that.
And all the king's horses and all the king's men
couldn't put Lisbeth together again.

drawing by Martha Miller

to be hopeful

TO BE HOPEFUL in bad times is not just foolishly romantic. It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness.

What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places—and there are so many—where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction.

And if we do act, in however small a way, we don’t have to wait for some grand utopian future. The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory. 

― Howard Zinn

photo by Robin Holland

winter days

Though I’ve lived in Maine over ten years, I still find it hard to believe that my home is in a place where snow is guaranteed every winter—lots of it.

Growing up in a suburb of Seattle, where the weather was mild, I delighted in waking to the rare winter storms that coated everything in white. On these special mornings I’d peel myself out of bed early, grab my long underwear, wool socks, flannel shirt, sweater and jeans, haul the lump to the living room and plop myself over the heater at the base of a large window and get dressed. Dim blue light filled the darkish room. Outside, large flakes dropped like bombs, smaller ones dancing around them, as I hopped over the warm forced air, which blew my hair around something like Marilyn Monroe’s skirt.

Boots, coat, hat, scarf, mittens—I’d  eagerly scamper outside with my brothers and sister. Some threw snowballs, others strapped thin wooden ski’s to their feet and slid down the shallow hill to jump off the short wall that flanked the hand-poured cement basketball court my dad had filled with water for a makeshift hockey rink. Off on my own I made snow angels and dissolved flakes on my tongue.

Once, my brother Matt and I rolled an enormous snowball around the yard until it was bigger than both of us. We shoved it off the edge of that wall and plunked it onto the rink. For the next hour or so we worked on carving a hole out of its center large enough for us to crawl into. Inside, Matt fashioned a little, packed snow-bench for us to sit on plus an icy placard that read KEEP OUT that he fastened just above the entrance. It was cool: our own little homemade igloo. I’d curl up inside and watch my brothers whack shabby hockey sticks at a scarred black puck, carve shavings off of the ice with their skates’ rusted steel blades.

Sometimes we’d build a sorry kind of misshapen snowman employing the usual crooked sticks for arms, dark rocks or bark for eyes with a gravel smile. He’d always be a simple, paired-down kind of guy that sat contentedly as the six of us and our friends frolicked around him pummeling each other with snowballs, stuffing snow down the backs of each others’ coats and rubbing it red into defenseless faces. Then we’d hear mom ringing the patio bell for breakfast. Back inside it smelled of broiled sausage, maple and cinnamon. The windows all frosted up as we’d pile sourdough pancakes onto our plates, slather them in butter and drown them in syrup before demolishing them and heading back outside again.

As I sit here writing this, two days after a good snow, I look out at the garden. The rhododendron leaves are all shrunken and drawn up in the sub-freezing temperature. Snow-laden branches sway in the chilly breeze. The yard is covered in white with only a trace of Michael’s foot prints—Rudy’s alongside—marring its surface. There are no snow angels, no igloos, no evidence of a snowball fight, no smiling snowman, no friends happily trudging powdery paths through the pristine blanket. There will be none.

Calvin got a pair of snow boots from his grandparents for Christmas. We beat the first challenge of getting them onto his floppy feet. But then he tried walking in them and couldn’t. The boots are either too heavy, too cumbersome, or both and—even indoors—he dangled from my arms like a pitiful forty-pound marionette.

And so, just like the past seven winters, we’ll spend it mostly indoors, though the crystalline sky with its warming sun might just beg us out for a stroller ride. And if it’s too cold for that we’ll simply snuggle and hug and kiss and “dance” to music, and I’ll pass the day dreaming fondly of my own winter days as a child.

i hope we make it through the night

Last night I heard a sound that I hadn’t heard in a while—the most blood-curdling sound I think I’ve ever known. It reminds me of a grieving woman wailing over her dead child or the horrifying, groaning shriek of someone being tortured. But it’s neither of those. It’s the sound my little boy makes near the start of a seizure ... when it transitions from a subtle partial seizure into a full-blown sinister grand mal.

He’d been in the bath again. I’d just come in from shoveling the driveway after a long day of snow and had built a fire in the wood stove. I’d started preparing Calvin’s evening medications—three of the four of which are seizure meds—while Calvin was upstairs squealing and laughing in the tub. He’d been unusually crazy the past several days and in my journal I’d written things like:
  
lots of head rubbing ... MAD FINGERING ... COMPLETELY BERSERK ... escalated in bath ... SUSPICIOUS of impending seizure ... SUPER HYPERSPASTIC @ lunch ...

Suddenly, an eerie silence fell over the room like a veil and I thought, oh boy, here it comes, and sure enough, his nurse Stacey called my name and as I ran up the stairs I heard Calvin’s agonizing scream, like some dog that'd been hit by a car.

Dripping wet, Calvin lay on the corner of the bed with a towel draped over his thin body. His face was turning as blue as I’d ever seen it, sickeningly reminiscent of Violet Beauregarde in Willy Wonka and the Chocolate Factory. He lay completely still, his fingers blue up to his knuckles as if dipped in paint. “Come on, sweetie,” I pleaded, and kissed him on the neck, “come on, baby, you can do it.” The nurse and I both took turns whacking Calvin’s wrists together—something a friend had shown me that his mother used in Waldorf institutions to stop seizures and something that had appeared to help in the recent past. Shortly thereafter Calvin took a deep breath and sighed and by two and a half minutes his color began to return.

While Stacey stayed with him and got him into his pajamas I fled downstairs for his medicine and some applesauce. As a team, we managed to spoon in his seizure drugs before he fell into a deep sleep. She picked him up like a sac of potatoes and gently laid him into his bed and pulled up the covers. We lifted and locked the safety panel, secured the netting and switched off the light closing the door behind us. We hugged each other on her way out.

Later, with the hissing baby monitor slung around my head, Michael and I watched the film Contagion. I was shocked to see actors—playing victims of an evil virus—writhing, foaming at the mouth, stiffening and convulsing in the vicious throws of grand mal seizures. I remembered reading that epilepsy used to be thought of as contagious and those afflicted were feared, shamed, placed into institutions and asylums, cast away from society. More so, it intrigued me to hear one of the film's characters ask how the victims had died. “Seizures ... coma,” someone said. Finally, I thought, maybe the world will begin to realize that people can die from seizures.

I looked in on Calvin on my way to bed, twisted the top of the tiny flashlight I use every night that's kept on his dresser, and shined it onto his dear face. His eyelids were smooth—closed—his fingers and ears appeared bright pink. He looks so peaceful when he sleeps, I thought. And as I curled up in bed I peered outside to the glowing winter night thatched with blackened trees clownishly iced in marshmallow fluff like in some Dr. Seuss book and thought—as I have countless times before—I hope we make it through the night.

Please continue to 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.

oh, the places you'll go!

Dr. Seuss gives us more inspirational, zany words to live by, and Burning Man the delightful images in this super fun, creative video.

haircuts

If it weren’t for a superwoman named Lucie I don’t think I’d ever get Calvin’s hair cut—I'd just tie it back into a ponytail or something and call it a day. It’s an exhausting, frustrating experience that I dread, thus I don’t do it nearly often enough and he ends up with a thick, unruly mass like a hairy helmet or some rabid animal clinging to his head.

When I was Calvin’s age my mother used to cut my hair. She’d grab a roll of Scotch tape and plaster a piece across my bangs, then try to cut along the bottom edge with a pair of loose, dull scissors. She might have been successful if she’d stuck the tape on straight in the first place, but that never happened so she’d end up correcting the error, then re-correcting, and so on until I had bangs that—if they were any shorter—would spray straight out like some punk rock star.

My brothers all got goofy buzz cuts as youths at the hand of my father. I guess it was too expensive to bring four boys to a barber. Dad even colored my mom’s hair—donned stained rubber gloves, squirted a bottle of thick die into her frizzy permed curls then foamed it into her skull. Once it came out the hue of an eggplant or a plum and with that colorful, patchwork blouse she liked to wear she kind of resembled a clown.

By the age of eleven I’d grown my hair out long. It was uber-thin and straight, not quite touching my elbows, and had a kind of shiny green cast with blond tips from sun and too much chlorine—felt like snot when it was wet. My siblings described it as stringy and my father kept on my case to brush it, but I loved it—messy, down, braided or tied back. One day, when I was about twelve, my sister got bored and convinced me to let her cut it all off. When no one was around I cried. After that I cried practically every time I got my hair cut until finally I let it grow long again in my early thirties.

Yesterday, I was a blubbering mess again, though not because I got my hair cut, but because I had to take Calvin to get his chopped. We both put on aprons and he sat in my lap while I restrained his flailing arms, pinned his kicking legs between mine and held his chin in place. It’s never a pretty sight, but Lucy is a pro—knows how to handle kids like Calvin who squirm and whine and spin their heads.

Equally as frustrating as the cut, is simply trying to pay for it. Calvin leans into me and cranes his neck any way possible to stare at the low sun shining in through the windows while I clumsily attempt to get my wallet out, at the same time keeping him from falling off balance and bonking his head on something. He won’t stand up when I try to put on his glasses, kerchief and coat, even though he’s able. He flops like a noodle in my arms. I wish I were an octopus on steroids when he gets like this. I definitely need at least one extra pair of hands. Lucie knows this and brings me the receipt and a book to sign it on then kindly offers me a home visit next time. I thank her profusely and manage to make my way to the door yanking on Calvin’s arm to keep him erect and walking. Once outside he’s fine, but I’m close-to-tears-fed-up-with-all-this-crap-I-must-endure-from-this-impossible-kid-and-it’s-only-a-frigging-haircut.

haircut 2010

man on the moon

It was as though the sky
had silently kissed the earth,
so that it now had to dream of sky
in shimmers of flowers.

The air went through the fields,
the corn-ears leaned heavy down
the woods swished softly—
so clear with stars was the night

And my soul stretched
its wings out wide,
flew through the silent lands
as though it were flying home.

—Night Of The Moon, by Joseph Freiherr Von Eichendorff

Awake in the middle of last night the full moon appeared as four, each disk diminishing slightly in size and brightness, quadrupled in the storm window’s glaze like a row of silvery coins. Looking up, my breath fogged the glass, but I could still make out the shadowy areas on the moon's seemingly flat plate surface. There’s the man on the moon, I thought. A few weeks before I’d seen a partial moon with two brilliant stars and thought to myself, Mama moon and baby stars. But truly, the full moon has always reminded me of Calvin, or rather, he of it.

The first time I saw Calvin was from the opposite side of a thick clear plastic box—an isolette. His head was round with downy fuzz, his ears—lacking cartilage—laid flat against his head. He had no eyelashes and his glowing skin was marked, wrinkled and red where tape had been peeled off having earlier secured the tube that went down his throat to help him breath. His tiny bird arm was splinted and bound where the IV needle had been threaded. With eyes closed, he appeared so peaceful if not for little worry lines already formed on his brow. “He looks like the man on the moon,” I said to Michael, and began to cry.

“Hi Calvin,” I said to the wee figure, smaller than a sack of sugar, who was stuck with leads and monitors and wearing only a diaper—so exposed, so vulnerable. At the sound of my voice Calvin opened his eyes for the first time, and I felt my heart free-fall, like a shooting star across a moonlit sky.

paraphernalia

I sit motionless in a gray steel and vinyl chair before a grid of full-spectrum compact florescent lights, eyes closed, a double-sided dark cloth draped over my shoulders. For ten minutes I hold this pose as Michael looks into the ground glass focusing the image of my face onto it, adjusting the camera’s fully extended bellows. He vanishes into his darkroom where he pours the emulsion onto the glass plate and dunks it into a silver bath before emerging and snapping it onto the back of the camera. He counts down, “four, three, two,” and on the count of one I take a deep breath and hold it for the forty-second exposure. In my stillness I realize how calm I feel—warm, silent—and I remark about it later, about how I rarely, if ever, relax like that and just ... do ... nothing.

My husband’s studio is packed to the brim with his photographic paraphernalia: chemicals, cameras, flasks, clamps, plastic trays, cloth and latex gloves. And then there are the photographs themselves; large black and white riverscapes; hand-tinted prints of old mill town structures; expansive cityscape triptychs, curled satiny silver gelatin prints; an oversized cyan sky reflected in a muddled green river reminiscent of an oil painting; and translucent glass-plate ambrotypes resting against a black velvet backdrop that magically reveals the rugged beauty of the images. To my delight, in nearly every section of the large space he’s hung photographs of me.

Stacked on end against the walls lean huge framed photos wrapped in smooth brown paper and masking tape. Some prints are pinned up, others hang framed on screws or nails. Gunmetal gray file cabinets bulge with 4 x 6 glossy prints inside waxy paper sheaths, countless yellow boxes boasting thousands of photographs buttress towers of flimsy negative sleeves from recent years past.

Michael is the most prolific artist I know, tirelessly laboring, inventing, creating—dreaming. His bodies of work are vast, deep and varied. His fearlessness of new territory, different methods, themes and subject matter reminds me of the innovation of Miles Davis or Beck—constantly evolving, experimenting—yet the familiar thread of genius throughout the work remains. He’ll blush at reading these words, dampen them down in his own modest way, but I know, his work is gorgeous, provocative, impeccable and timeless.

A few nights after modeling, I return to his studio to see the day’s work. Scattered across the tabletop are countless orange bottles with childproof caps sporting printed white labels with Calvin’s name. In large bold letters one reads MAY CAUSE DIZZINESS. Many are empty, others still contain the sinister little capsules stamped in a tiny font: ZONEGRAN. We’ve saved most of the empty or discontinued drug canisters and their contents over the past five years for Michael to photograph. Along with the amber bottles are translucent ruby vessels with traces of syrupy liquid beading their insides, paper-backed foil blister packs—the kind that are oh-so satisfying to pop—bundles of striped urine test strips and multiple dozens of crinkled, stained handwritten medication logs with rows of penned in Xs and administration times.

“Makes me sick to look at them,” I say to Michael, regarding the piles and piles of foil and plastic casings strewn on surfaces or spilling like guts from every possible nook and orifice in the large, cluttered space. I imagine Calvin’s pristine little body, his smooth belly and flawless skin, and think of all the wicked chemicals we’ve spooned into him over the course of nearly six years. Frigging seizures, I think, effing drugs. And yet this paraphernalia proves so ironically beautiful to behold, like precious metal, little gems or handfuls of pearls. At the same time they remind me of the acrid metal of war, of steely prison walls, padded white cells, of the numb brain and bleak future of my precious, innocent little boy who, every morning and night, we woefully coax to open his mouth and choke down this string of endless, chalky, bitter pills.

Please share Calvin's story with others. Help bring us one step closer to a cure for epilepsy. It's as easy as pushing a button.

photo by Michael Kolster