1.30.2013

courage

My friend Heather wrote to me the other morning after I'd thanked her for her recent donation to epilepsy research and for her ongoing support of my efforts as witnessed by her kind and loving messages and sharing of Calvin's Story posts on Facebook. She had been a year or two behind me in high school though we really didn't know each other. I only knew that she was an identical twin and that she was beautiful. Now I know that her beauty is not only skin deep.

She had recently read a piece about courage by Kristin Armstrong, from which she included an excerpt. Then she sent her love to me and my family.

The excerpt reads:

Courage is not only manifested in major moments. Sometimes it is quieter. Sometimes it is a series of small moments or choices that brand the brave. Sometimes it is not big or flashy at all. Sometimes it means taking the high road for so long that you can finally turn off your GPS. Sometimes courage is exhibited in people who simply continue to do the next right thing. People who do the ordinary with great character, and only think they are doing what is expected. Some of the bravest people simply do what they need to do and never consider anything special or unique about it. Courage is all around us, yet because bravery and bravado are not the same thing, it often goes unseen, or seen but unrecognized. 

After reading this I thought about what courage means to me, particularly in the face of raising Calvin. I think the most courageous thing that I do is simply to endure the heartache knowing that he hurts, watching when he seizes, making him take so many bitter pills, seeing him when he feels ill or dizzy or nauseous or crampy or headachey and cannot tell me what is wrong. That takes courage, but at the same time I really have no choice in the matter. He is my child. All the rest I simply do because I can, and because people like Heather, and so many countless others, help to fuel my fire.

Please consider a donation to CURE epilepsy: http://www.calvinscure.com It takes no courage at all.

1.29.2013

level the playing field

Disease                      NIH funding          Americans      Annual               
                                    2012                      afflicted           deaths

                                   (in millions)

Alzheimer's                  $498                      5.4 million         83,000
Epilepsy                       $153                      3 million            50,000
Breast Cancer              $712                      200K*               41,000
Parkinson's Disease     $151                     1 million            15,000
Multiple Sclerosis         $121                      400K                  2,400

Help level the playing field. Donate to CURE epilepsy now: http://www.calvinscure.com

Statistics from the Center for Disease Control and the National Institutes of Health.
*Annual new cases of invasive breast cancer, equal to the number of new epilepsy cases.

1.28.2013

nutty, crazy, wacko

I remember a time when I had to give Calvin medicine twenty-two times every day. Some of his meds he took only once daily, others twice, some were administered three times a day and another I gave him four times every day. Now it's down to seventeen times, including supplements. Nutty.

Clear pink and milky white liquid medicines were—and still are—shaken, syringed, given straight or diluted in water in his sippy cup. Capsules needed to be opened and their white powdery contents sprinkled into Calvin’s yogurt. For a while I had to give him just half of a capsule, which entailed pouring some of the chemical from one tiny half of the open gelatin capsule into the other and eyeball it through the translucent gel until both halves appeared to hold equal amounts. Sometimes the contents would dump out all at once like ice cubes do when slurping the last few drops of beverage out of a cup. Crazy.

Pills were always easier to handle than capsules, though not when I’ve had to cut them into quarters, or even eighths, and you can forget about being precise when the damn things are oval. I’ve made a handy stencil on the back of an old, flaky mirror and cut the tiny pills on the glass using a razor blade. Dubious.

At some point, after Calvin's epilepsy diagnosis and after initiating the Ketogenic diet, Calvin was taking upwards of eight medicines, all with different dosing protocol. I had to devise a check-off chart so that I could account for each drug that I had administered lest I forget which ones he had gotten and which ones he hadn’t. The consequences of forgetting a seizure medicine, or double-dosing it, are equally hairy, though, as far as I know that has never happened on my watch. When first diagnosed with epilepsy and while still in the hospital, Michael and I realized that the adult neurologist on duty had given Calvin twice the dose for his weight—equivalent to an adult dose—of one seizure medicine. Calvin went nuts, screaming and writhing like a maniac. His behavior led us to request the drug literature before his second dose. It exposed the error and we told the doctor (via an intern) who immediately halved the dose though never owned up to the mistake and never showed himself to us though we had requested to see him several times. Wacko.

Now, if we could just discover a cure we could do away with all the nutty, crazy, wacko, dubious world of chemical drugs and their side effects, not to mention the effing seizures.

In honor of Calvin's ninth spin around the sun, please join us in spirit or in person for our 5th anniversary CURE epilepsy benefit by donating what you can to epilepsy research at: http://www.calvinscure.com

1.27.2013

to love

To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never, to forget.

—Arundhati Roy


Summer 2006

1.26.2013

day fifty-seven

Sometimes I wonder if it’s the moon, its gravitational pull on everything earthly, perhaps beckoning my son’s seizures, releasing the pressure that has built up in his brain’s tectonic plates.

Everything was going along swimmingly. We had begun Calvin on a yeast-eradication protocol to rid him of what we think are stubborn colonies hanging out in his gut wreaking havoc. The thinking is to give him oral anti-fungals to kill the yeast, which in turn will reduce or eliminate the inflammation in his gut, which we hope will boost his immune system since every time Calvin gets even a mild cold he has a seizure. With luck this method might lead to better seizure control—perhaps seizure freedom—without continuing to increase and/or add seizure medicines; high doses of three anticonvulsants are more than enough to F-up Calvin’s balance, coordination, vision, cognition, behavior, memory and development.

So, Calvin is sailing along for fifty-seven days, almost triple the stints he’s gone since his all-time best performance of seventy-eight days, seizure free. In my room I have begun writing chapter four of my book. Calvin is in the bath, his nurse on watch. Amidst his vocal and playful splashing he goes silent ... for a long time. I think it very odd, and just before I get up to look in on him, and suggest perhaps he come out of the bath, I hear him begin to play again.

Several minutes later the nurse calls me and I jump. “I think he’s having a seizure,” she says, and I see her carrying my boy in her arms to the bed. He is naked and dripping and seizing. I grab a towel and lay it over his thin body, which is eerily still. Unlike most of his seizures this time he isn’t convulsing. He looks as if he is dead but for the faint pinkness of his lips that are tinged with blue. His eyes are wide open staring, vacant. “Oh Calvin, it’s going to be okay ... Mama is right here,” and I kiss him in the warm nape of his neck. We lay my sweatshirt over his exposed legs and I kiss him again then glance once more at the clock. At three minutes he begins to come to life with a little whimper, and when I kiss him once more he says, “Uh-uh,” which is his way of saying “Mama.” He knows I’m there.

The nurse and I get his floppy, drunken body into his diaper and pajamas then lay him down in his bed for an hour’s sleep. When he awakes we bring him downstairs to give him his evening meds. “Man, he’s whiter than white,” Michael says as we buckle Calvin into his high chair. My boy has a pained expression, a furrowed brow as if he is going to cry. “I know, honey, we just have to give you your pills,” and I know he has a headache. And so Calvin opens his mouth, like the dutiful boy that he is, for four white Clobazam, three blue Keppra, two pink Banzel, two grapefruit extract anti-fungal capsules and one Ibuprofen. We skip the digestive enzyme. Then we scoop him up and bring him back to bed for the night.

A frosty moon appears in the night sky, not quite full, but almost. I cannot see Orion. I cannot see the stars. I cannot see an end to all of the seizures, the drugs, the suffering.

In honor of Calvin's ninth spin around the sun please donate what you can to CURE epilepsy at: http://www.calvinscure.com


1.25.2013

friday faves - grandma's album

Shortly after my grandmother died at the age of ninety-five—just two years before her son died—my dad tugged a large trunk out of a downstairs closet. He told me to go through the things she had left in it and choose whatever I’d like to have. The trunk was a dark wood lined with thin brittle tea-stained paper, bubbling and separating from its edges. In it were several empty wooden frames, a few purses, a rosary, handkerchiefs, gloves, a bible and other knickknacks you’d expect to find in a musty old trunk owned by a woman born in 1899.

I chose one of her rosaries, not because I was raised Catholic (I unsubscribed to Catholicism a long time ago) but because of its beauty and the knowledge that my grandmother’s supple, thin-skinned fingers ran over its beads. Then, a red velvet booklet caught my eye, slightly smaller than a half sheet of paper, about an inch thick with rounded corners. A decorative font embossed diagonally across the front reads ALBUM surrounded by what were velvet curlicues and sprinkles, though long worn thin and threadbare from being handled. An old piece of shiny amber tape secures a tear on the inside page where my grandmother wrote her name in the familiar cursive I remember from her correspondences to me. The opposing page is prettily adorned with three delicate budding tea roses.

Most of the book’s pages are empty, though the beginning is filled with various quotes, all written in my grandmothers hand. The first is about the affects of the caustic tone of voice and is attributed simply to “mother.” Following are quotes from Emerson, Longfellow, Buddha, Confucius, Muhammad, Plato, Goethe and President John F. Kennedy. Brotherhood, kindness, love, self-discipline and hope are common themes. One of my favorites reads:

"If I keep a green bough in my heart, the singing bird will come."
 —Old Chinese saying

I’ve read these quotes many times, lightly touching the yellowed paper and faded black ink, always remembering the common thread of biology that runs from her through my father then to me. I wish I had known her. I really didn’t. She lived so far away. I only know she had Spanish blood, bore two sons, was well read though not college educated, played the guitar on the radio and lived in San Francisco, as did I. But through the selection of passages she has transcribed I realize we are so alike, and that feels wonderful. I have continued to write favorite poems and quotes in the album. I only wish Calvin could, one day, read them all and add his own. Something else to dream about.

Originally published 04.28.11.

My dad and Grandma with one of my brothers

1.24.2013

second graders

Second graders are painting and sculpting polar bears. They’ll be learning about various indigenous peoples and their customs, perhaps making papier-mâché Inuit masks and building musical instruments tying in their knowledge of how insects make sound. They’ll be learning about Native Americans and the importance of mammals to their culture. In the newsletter I’m asked to prepare for my child to inundate me with stories about what he discovered. In math, the second graders will be focusing on a strategy of bar models that will help them decide how best to find solutions, and will begin working with decomposing numbers. My second-grader, Calvin, will likely be doing none of it.

Some kids are writing about way they would change the world. Others are creating cut-paper collage penguins to paint. Calvin is shuffling pigeon-toed down the hallways in his walker. As he motors along his hands are not free. His loving aid is close by his side—always.

A staff member writes about the truly amazing depth, breadth and creativity of the children’s endeavors. She includes this quote by an unknown author:

To remain calm amidst the chaos of life requires a tremendous amount of focused energy. Be calmly active and actively calm.

For years I’ve wished in vain for that for my boy Calvin, but the side-effects of the drugs he takes to dampen his seizures makes calm completely impossible.

The second graders will be performing some skits and singing in choir. Soon they’ll be discussing discrimination and learning about history and, of course, they’ll be reading—a lot. They’ll be starting seeds indoors, watering them and composting in preparation for planting a garden in the spring.

Until we find a cure for epilepsy we’ll be indoors trying to avoid bumps to the head, broken teeth and bad falls. We’ll be working on Calvin’s balance like we have since he took his first steps at two years old, already under the dizzying effects of anticonvulsants. We’ll be giving him twelve pills and capsules every morning and every night, and we’ll have to coax them in by squeezing his cheeks ever so slightly—though sometimes harder—because he doesn’t want to open for them any more. And we’ll try our best to get him to sit still while we read to him from one of his old favorite, chewed-up board books, and hope one day he'll delight in them again.

January 2011: back when Calvin used to enjoy books

1.23.2013

for our laurens

Written by Susan Axelrod

I had the once-(actually twice)-in-a-lifetime experience of attending the Presidential Inauguration Day Prayer Service at St. John’s Church across from the White House on Monday. Built in 1815, it is a stunning Episcopalian Church that has been attended by every President who has served our country since James Madison. It is beautiful, and the history is breath-taking.

But, what really took my breath away happened at the very beginning of the service. It was very early morning in what was to be a very long day, and I’d not had had my second cup of coffee yet. But, I was jolted into a fully awake state by the Reverend’s very first remarks.

He welcomed us, and said that the day before he had been visiting a parishioner—a young girl named Lauren. Twelve years old, she was having multiple seizures every single day and was about to undergo a 15-hour hemispherectomy. For those of you who may not know what that means, they were about to remove half of her brain. He had been with her to pray, and mentioned to her that he would be presiding over this important service the very next day. When he left her hospital room, she said to him, “Please tell President Obama I am praying for him.”

I thought maybe I was still asleep and dreaming, but it was clear I had heard him correctly. I was stunned into tears. We hear so many heartbreaking stories about courageous children—so often about kids who are battling cancer or other horrendous illnesses—but rarely do the stories revolve around epilepsy. And, the fact that she was also a “Lauren,” like my own daughter, blew me away.

Even more than that, though, it got me thinking about my Lauren, the Lauren whose story the Reverend had just shared, and all the children struggling with epilepsy that I’ve come to know over the years. They’ve been robbed of so much, and endured far too much suffering, pain and sadness in their young lives.  But, they inspire me with their resilience, and their amazing capacity to think beyond their own struggles and hardships.

The young Lauren the Reverend described exemplifies the heart-wrenching struggles so many of our kids have faced. Her story also reinforces the obligation that those of us who know and love them face–to ensure that we are doing all we can to improve their lives, and to ensure the health and safety of generations to come. This is why we believe in the power of research—the power to truly change lives.

If young Lauren can be thinking of the President and others as she lies in a hospital bed awaiting the removal of a half of her brain, then it is the very least we can do to fight as hard as we possibly can for her and so many others.

Thank you for your support of this cause. It is deeply appreciated.

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

Susan Axelrod and her daughter, Lauren

1.22.2013

one today

By Richard Blanco, inaugural poet

One sun rose on us today, kindled over our shores,
peeking over the Smokies, greeting the faces
of the Great Lakes, spreading a simple truth
across the Great Plains, then charging across the Rockies.
One light, waking up rooftops, under each one, a story
told by our silent gestures moving behind windows.

My face, your face, millions of faces in morning’s mirrors,
each one yawning to life, crescendoing into our day:
pencil-yellow school buses, the rhythm of traffic lights,
fruit stands: apples, limes, and oranges arrayed like rainbows
begging our praise. Silver trucks heavy with oil or paper—bricks or milk, 

teeming over highways alongside us, on our way to clean tables, 
read ledgers, or save lives—to teach geometry, or ring up groceries
as my mother did for twenty years, so I could write this poem.

All of us as vital as the one light we move through,
the same light on blackboards with lessons for the day:
equations to solve, history to question, or atoms imagined,
the “I have a dream” we keep dreaming,
or the impossible vocabulary of sorrow that won’t explain
the empty desks of twenty children marked absent
today, and forever. Many prayers, but one light
breathing color into stained glass windows,
life into the faces of bronze statues, warmth
onto the steps of our museums and park benches
as mothers watch children slide into the day.

One ground. Our ground, rooting us to every stalk
of corn, every head of wheat sown by sweat
and hands, hands gleaning coal or planting windmills
in deserts and hilltops that keep us warm, hands
digging trenches, routing pipes and cables, hands
as worn as my father’s cutting sugarcane
so my brother and I could have books and shoes.

The dust of farms and deserts, cities and plains
mingled by one wind—our breath. Breathe. Hear it
through the day’s gorgeous din of honking cabs,
buses launching down avenues, the symphony
of footsteps, guitars, and screeching subways,
the unexpected song bird on your clothes line.

Hear: squeaky playground swings, trains whistling,
or whispers across cafe tables, Hear: the doors we open
for each other all day, saying: hello, shalom,
buon giorno, howdy, namaste, or buenos días
in the language my mother taught me—in every language
spoken into one wind carrying our lives
without prejudice, as these words break from my lips.

One sky: since the Appalachians and Sierras claimed
their majesty, and the Mississippi and Colorado worked
their way to the sea. Thank the work of our hands:
weaving steel into bridges, finishing one more report
for the boss on time, stitching another wound
or uniform, the first brush stroke on a portrait,
or the last floor on the Freedom Tower
jutting into a sky that yields to our resilience.

One sky, toward which we sometimes lift our eyes
tired from work: some days guessing at the weather
of our lives, some days giving thanks for a love
that loves you back, sometimes praising a mother
who knew how to give, or forgiving a father
who couldn’t give what you wanted.

We head home: through the gloss of rain or weight
of snow, or the plum blush of dusk, but always -- home,
always under one sky, our sky. And always one moon
like a silent drum tapping on every rooftop
and every window, of one country—all of us—
facing the stars
hope—a new constellation
waiting for us to map it,
waiting for us to name it—together

1.21.2013

mind warp

Every now and again, during late-night dinner conversations or huddled in front of a blazing fire, the dialog between friends might traipse off to drugs. We might talk about which ones we've tried—if any—and which ones we haven't. We might discuss the Valium our mothers took, the heroine our friends might have been addicted to, the shrooms we'd passed up at a rave, the cocaine our boyfriends might have abused, the pot we might've smoked to dampen our grief. At times, compelling films like Citizen Ruth, Boogie Nights and Requiem for a Dream might have coaxed us to consider the plight of glue-sniffers, crackheads or meth addicts. Lately, the hubbub has been all about the legalization of recreational marijuana use in Washington and Colorado. I think about my mild yet ignorant regret having not experimented with LSD when I was young and roguish, though, at the time I feared such drugs. But, over the years, I’ve heard several thought-provoking accounts from various writers, philosophers and artists describing their past experience with LSD as having broadened their perceptions, allowed them to see and understand life through an entirely different lens that positively informs their art and the way they approach the world.

Since Calvin’s epilepsy diagnosis I find myself pondering a whole different class of drugs previously unknown to me: the dreaded anticonvulsants. I grieve for my boy who has had to take scores of the powerful, mind-altering chemicals—chalky bitter tablets, vile crystalline powders, acrid tinctures—since he was the tender age of two and before he could walk. Drugs or no drugs, I have to think that Calvin’s mind works differently than mine, that he sees things in a way that I never will. He’s missing a hank of white matter—his brain’s super-highway—and how he gets around, sees and hears the world, no one knows. Do images flit by before his eyes like in a time-lapse video, or do they thicken and clog, the sounds he hears morphing into molasses baritone and bass? Does he experience some form of synesthesia when he stares at the sun—as he’s bent on doing—that produces symphonies in his brain? When mouthing an object of a particular shape or texture does he behold a vivid kaleidoscope? Does his mind interpret images and sounds in the same manner as mine does, or does he swim around in some Alice in Wonderland dreamscape, apparitions floating above his head like clouds or jellyfish? I wonder if patterns, geometry and repetition are, to Calvin, nothing less than sublime beauty.

I’ve heard that in the moments before a seizure its aura can give rise to unusual smells and tastes or flickering lights. In a novel I read a few years before Calvin was born called Lying Awake, by Mark Salzman, an afflicted nun is faced with the weighty decision of undergoing brain surgery to rid her of her seizures. She balks at the notion because it is during those auras, and the seizures themselves, that she feels closest to God, feels as if she were having an epiphany, which for her is pure narcotic and inspires her poetry. The prospect of surgery seems an agonizingly no-win situation for her, whose divine visions would literally be cut out with a knife, perhaps severing her unique relationship with God and spirituality.

I often wish there were some crystal ball that I could use to peer into Calvin’s brain so I could know what he’s thinking, feeling, hearing, seeing. As it is, I can never be sure if his behavior is due to auras, seizures, pain, discomfort or epileptiform discharges. Are his outlandish behaviors drug-induced from withdrawal, toxification, the drugs’ basic gnawing side effects of irritability, nausea, mood swings, visual disturbances, headaches? Or are they simply the result of a growing boy, who can't talk, transitioning through different stages of development? But I have no crystal ball. So the best I can do is to empathize by trying to put myself into his shoes—get into his head. I must imagine myself under the spell of his drugs, which I think would be a pretty crazy, scary, awful trip and one that I’d never wish on anyone or think I’d missed out on as a youth.

1.19.2013

the blink of an eye

Our twelve-year-old chocolate lab, Rudy, is going deaf. He also doesn't see as well as he used to and it's possible he might be losing some of his mental faculties.

Yesterday, I took him out for our morning walk. It was sunny and eight degrees outside with a slight but cutting wind, the air thin and dry. I wore my long down jacket, fiber-filled pants, wool socks, fleece boots, wool hat and rabbit fur-lined gloves. I was still cold.

It wasn't surprising to be the only ones at the college athletic fields, which are covered in treacherous, half-melted, iced-over snow, and usually frequented by half a dozen or more dogs and their owners on any given morning. I kept a somewhat brisk pace, periodically glancing over my shoulder to ensure Rudy, exploring off-leash, was still in tow. Just before reaching the east end of the field I turned around to see Rudy just a couple of yards behind. Several steps further I looped around to head back. In those few seconds Rudy had vanished. I called out his name while running toward the stand of trees to the east, peering down the wooded lane between them. No Rudy. I hurdled the snow bank and frantically ran into the parking lot, searching. No Rudy. I headed into the brisk wind toward the AstroTurf field, calling, calling, calling. No Rudy. Where could he have disappeared to in such a brief moment? Finally, I spotted him a hundred yards away at the opposite end of a long stand of trees flanking the AstroTurf field. I could tell that he heard me, was looking with perked ears in every direction but mine. I held out my arms in a familiar way hoping he'd see me as well as recognize me. The dog finally honed in on my voice and began happily trotting my way, his ears flopping along as he gradually picked up the pace.

Utter relief. That's what I felt. "C'mon Rudy, lets go home," and I realized that my chin had become an ice cube, my face frozen by a wind-chill factor easily below zero. I thought about the panic parents must feel when they lose their children in a shopping mall or airport. And then I thought about the parents of the Sandy Hook Elementary students, the terror and dread they must have felt on that godforsaken day.

Be thankful for what you've got, I thought to myself, realizing that, in the blink of an eye, it can all disappear into thin air.

photo by Michael Kolster

1.18.2013

friday faves - underdogs

I’ve always rooted for the underdog—the tortoise instead of the hare, the second-seat swimmer, the under-privileged kid, the young “inexperienced” idealistic presidential candidate, and now, my disabled son.

In the summers of my high school and college years I coached a couple of swim teams in Washington and Oregon. My favorite was a golf and country club team that had a history of hanging out comfortably at the bottom of the twenty-team league. On the first day of workouts, at the modest pool with its mini snack bar, about thirty kids showed up, most of them straggling onto the deck late, towels casually hung around their necks. That day we had fun playing pool games like sharks and minnows. I encouraged them to invite their friends to join, whether they had swum on a team or not, and posted fliers enticing would-be athletes. Within a couple of weeks 104 kids between the ages of four and eighteen, some barely younger than I, were swimming laps in wavy crowded lanes each morning.

I demanded a lot from my swimmers, and in return I worked hard for them, staying up until the wee hours of the morning strategizing unbeatable lineups for meets. The kids put in their best effort, were devoted and punctual because they knew I expected nothing less, and they delivered.

One rule I had for each swimmer was to compete in every event in his or her age group. At the last home meet, I was sitting on the hot deck by the side of the pool, surrounded by little kids, my clipboard in hand. One of my ten-and-under girls shyly approached me. She said, “coach, Jenny doesn’t want to swim the 100 I.M. She says she can’t do it.” I told the girl that I had complete confidence in Jenny and I wouldn’t scratch her from the event. If Jenny chose not to swim, I said, then it would have to be her decision. The girl sulked away.

A few minutes later I watched little Jenny step up hesitantly on the slanted block, her big suit sagging off of her skinny frame. Flanking her were just two other girls. The starter fired his gun and the swimmers flopped askew into the cool blue water. Butterfly. Backstroke. Breastroke. Freestyle. The three flailing contenders kept edging each other out during the suspenseful race. In the last few yards Jenny, neck and neck with the others, poured it on like I had taught her, and nailed the finish hard. The image of her gasping for air with sheer surprise and glee on her face brings me to tears as I write this. She was so proud. She was the underdog, and not only did she do what she didn’t think she could, she had won her first blue ribbon.

Our team ended up second in the league that year, all of us underdogs. I think of that summer and of those kids often, especially when I am with Calvin, coaching him to walk upstairs, to climb onto the couch, step into the bath, pull his shirt over his head and walk where he doesn’t want to venture. I know if I expect a lot of him and encourage him to never give up, he will deliver, even in the face of all the seizures and the drugs he must endure. And he does. My little underdog is a true winner.

Originally published 02.23.11.

Overlake Golf and Country Club Swim Team, 1982

1.17.2013

ode to my sisters

sisters, you amaze me.
you let me cry or cuss or raise my voice.
you listen silently, so calm,
and hold my hand in your palm, softly.
sometimes you don’t say a word,
but like a beautiful bird,
you wrap your wings around me with grace,
and hold me in your warm embrace.
you are patient and kind,
and you understand my heart and mind,
we are entwined.

sisters, you lift me up so high,
and make me laugh until I cry,
or cry until I laugh.
you’re always there when I need you most,
no matter which island or coast you live on.
perhaps we don’t talk for weeks or months at a time,
but I know you are mine none-the-less.
you are all the best.
you know who you are,
you are my sisters, near and far.
I love you through and through,
it’s true.

Originally published 02.18.11.

Sarah Detweiler

1.16.2013

easier to bear

It's a terrible thing to feel alone in the world, as if no one can understand our suffering. Since Calvin was born I've felt that way much, and recently. It feels helpless and black, as if the only way out of it is to move through it—to weep in solitude. But I've discovered another path, which is to open up to others and in doing so learn that everyone struggles and hurts in one way or another. I have learned that this thing called grief cannot be measured or compared, knows no hierarchy and cannot be escaped. We will all meet suffering in our lives and somehow, knowing I am part of a human condition that every one of us shares—grief—makes it somewhat easier to bear.

photo by Michael Kolster

1.15.2013

success

To laugh often and love much;
To win the respect of intelligent persons
and the affection of children;
To earn the appreciation of honest critics
and endure the betrayal of false friends;
To appreciate beauty;
To find the best in others;
To give of one’s self;
To leave the world a bit better,
whether by a healthy child,
a garden patch or a redeemed social condition;
To have played and laughed with enthusiasm
and sung with exultation;
To know even one life has breathed easier
because you have lived.
This is to have succeeded.
 
—Bessie Anderson Stanley

1.14.2013

ronan's orion

Our boy Calvin has a habit of waking up at 4:30 in the morning. I usually find him uncovered and rocking, rubbing his head in his palms as if he has a headache, which, because of the antiepileptic drugs, he probably does. I unhitch the netted safety canopy tented over his bed, step up on the little wooden stool, reach in to drag him up onto his pillow and cover him again. If he wants water, I give him some from his sippy-cup, my left hand cradling his sleepy head. Then I re-secure the netting and shuffle off to the bathroom before heading back to bed, and by then he is already fast asleep.

On crisp, clear winter nights I can see Orion out the bathroom window. He appears strong and fearless in the sky and I fantasize that somehow he is watching over Calvin. The other night Orion was surrounded by a billion visible stars and I imagined them each as points of light representing seizures that little kids are having all over the world, imagined Orion trying to wrestle those seizures to the ground. Weird, I know, but that's where my mind goes—sometimes often.

The other day, while I was doing a quick Internet browse, I saw a status update by my Facebook friend, Emily. She wrote about how her two-and-a-half-year-old son Ronan, who is dying from Tay Sachs disease and who has slipped into near total paralysis, blindness and had long ago developed seizures, can no longer swallow. She explained how he is now taking fluids and meds through an nasogastro tube, and his body is slowing down.

I watched an outpouring of love and support wash over the social media format, friends sending compassionate messages for this woman and her beautiful child. One message simply read, "Godspeed, Ronan." I cried as I read scores of others from people whose love and admiration for Emily and her Ronan are palpable.

I went to sleep last night—as I've done so many times—with the image in my mind of Ronan being carried—embraced—by Orion, who whisks him through the night sky, between the countless stars, through gossamer clouds to touch the gleaming moon with a kiss to his forehead—smooth, fair and tender. I’ll dream of Ronan as his celestial giant watches over him and his mother in their sweet, peaceful slumber. And I will dream this tonight, tomorrow night and the next, and it won't be the first time. I’ll hope to see Orion shining in the night sky above our home, the same velvety sky studded with diamonds that in reality are beautiful shining stars upon which a million wishes are being made for little Ronan.

Thought provoking works by Emily Rapp:

The Still Point of the Turning World 
Poster Child
Someone to Hold Me
Notes from a Dragon Mom
Our Little Seal 

To give to Tay-Sachs research: http://www.ntsad.org/
 
Emily and Ronan, photo by Anne Staveley

1.13.2013

terms i know (that i wish i didn't)

ventriculomegaly
SUDEP: sudden unexplained death in epilepsy
cyanosis
status epilepticus
plasmapheresis
electroencephalogram
tonic-clonic
hypotonia
beta-hydroxybuterate
lobectomy
corpus callosum
AED: antiepileptic drug
medically refractory epilepsy
intubation
leukodystrophy
pulmonary surfactant
polytherapy
fistula
VNS: vagus nerve stimulator
phlebotomist
periventricular leukomalacia
hypoxia
tachycardia
post-ictal
comorbidity
oxygen desaturation
ataxia
epileptiform discharge
toxic epidermal necrolysis
gelastic seizure
benzodiazepine derivative

1.12.2013

pool of tears

Yesterday at the pool I said out loud to my friend, Sandy, what I've been thinking for the past couple of years whenever I've gone swimming, which is that I've gotten over the tremendous sadness I'd always felt when swimming laps after Calvin was born. I'd felt it for years, cried a pool of tears with every visit, which is why I could never bring myself to going more than a few times each year before throwing in the towel. Last winter was the first time I felt free of those sorrowful feelings.

I suppose in a way it makes me think that perhaps time does heal all. That's not to say that the scars disappear, they might still be tender, numb or tingling when touched, but the wound has healed over some, isn't gaping and raw as it once was.

I've made a new kind of relationship with the water. In a way I've had to swim through it to get to the other side, just like grief itself. And so, the aches and pains I am feeling in the pool now are the result of a body nine years older and one that is ridiculously out of shape. But with any luck that hurt will pass soon, too, if I can just ... keep ... at it.

photo by Michael Kolster

1.11.2013

friday faves - greased watermelon

Our coach lobs the large, heavy ovoid melon into the pool, its ragged zebra stripes dissolving from dark green into avocado or lime like a chameleon or some incognito fruit. It’s greased like a pig, thick swaths of whitish Crisco smeared over its rotund form rendering it nearly impossible to seize.

The orb kerplunks into the water, descending below the glossy surface toward the white sandpapery bottom with its shiny black tiled stripes that bend like a fork into the deep end. For a moment the fruit is suspended before slowly making its way back up. Just then, an attempt to nab it is thwarted by its own greasy sheath and it is propelled, like a tiddlywink, from the suitor's grasp.

Skinny kids with puffed up cheeks and squinting eyes swim like frogs toward the melon, tiny bubbles escaping from their lips. It looks like a dreamscape, like the ones in which I can breathe underwater, can drink the liquid into my lungs as if it were oxygen. Wavy patterns of squiggly light line the pool’s basin and the glowing skin of a hundred gangly arms and legs appear as a sparkling school of giraffe fish. Each of the team’s members remains in hot pursuit of the semi-buoyant fruit.

At long last one of the older swimmers is able to hug the melon to his chest and kick with all his might underwater to the opposing team’s end and plop it into the gutter for a gasping win. Usually, the melon splits open into a watery gush of red, green and specks of black to be eaten by all.

Somehow, like many things since Calvin’s epilepsy diagnosis, this fond memory of playing greased watermelon at my childhood community pool reminds me—oddly—of his seizures. I think of how difficult, if not impossible, the seizures are to get hold of, how just when we think we’ve captured them they get away. I think about the melon’s jagged stripes, like lightening bolts or zigzaggy brain waves. I imagine that melon as if it were an egg or Calvin’s head—like Humpty Dumpty—cracking open due to seizures never to be put back together again.

But it’s only a fleeting comparison and somehow not disturbing to me at all. Must be because these memories of hot blue summer days, gleeful screams, splashing bodies, inspirational cheers and side-splitting laughter bring me happiness. These images spark a warm smile thinking about paddling around amongst all of my friends like a bunch of tadpoles. The memory of these moments can never be ruined, never be taken away by anything, not even Calvin’s goddamn, unrelenting seizures. That’s the beauty and power of the dreams of childhood days, of joyful friendships, sportsmanship and love ... and of a silly, greased-up watermelon drifting through the water like some goofy, slow-mo Mel Brook's asteroid. But it is too bad my little Calvin will never get to do it.

Originally published 02.06.12.
bonappetit.com

1.10.2013

a trip to one place

You know how it is.
Sometimes we plan a trip to one place,
but something takes us to another.

—Rumi

1.09.2013

triumphs

Recently, a thoughtful reader left a comment to my blog post, parent perspectives. It read:

These are all difficult stories. I share in them with my child. But, I was wondering do you have any story that had a turn for the better? That would be good stimulus for us all!

I mulled the words over in my mind for a long while, tried to think if I could remember any stories of triumph over epilepsy. After a while I was able to come up with a handful at best. There is the story of my friend Jim Abrahams' two year old son, Charlie, whose thousands of stubborn seizures stopped after going onto the Ketogenic Diet. He'd had to stay on the rigorous, exacting diet for about five years, if memory serves me, but he hasn't had a seizure since. Charlie is now a healthy young adult. Then there is my friend Susan Axelrod's daughter, Lauren. After eighteen years of persistent seizures, failed trials with over twenty drugs, dietary therapy and one or two brain surgeries, they finally discovered a combination of drugs that stopped her seizures. And then there is my friend Michelle's sweet boy Miles, who has Down syndrome and suffered seizures for many years. He'd tried several medications plus the Ketogenic diet and his seizures finally stopped. I am unclear if the therapies worked or if he simply outgrew the epilepsy. What is clear is that now his body and mind can be free to develop at a better pace.

In all three cases I have little doubt that the years of seizures and drugs took a major toll on the children's development. In Lauren's case she is significantly developmentally delayed and still has to take three drugs every day which, regrettably, don't come without side effects, and she may well have to take them for the rest of her life. I also have little doubt but that these children remain brilliant stars in the eyes of those who love them.

Seeing things from a different perspective, and though I would give anything—ANYTHING—for Calvin to be healthy, seizure free, drug free, able to walk and talk and run and play, I have found a rich and beautiful life nonetheless, one that my friend Elizabeth, whose daughter Sophie has acute epilepsy, reminds me is also totally strange. I have encountered feelings to a depth I had no idea was possible—joy, anger, frustration, empathy, love, grief. I have learned to honor these feelings, every one of them, as part of being human. I don't fear them, I don't try to sweep them under the rug and I definitely don't hide them. They are part of me and, to a great extent, exist in such profundity because of Calvin and who he is. And the mere fact that I can say this about myself, that I have a rich and beautiful life, is one significant triumph over epilepsy.


1.08.2013

the laughing heart

your life is your life
don’t let it be clubbed into dank submission.
be on the watch.
there are ways out.
there is a light somewhere.
it may not be much light but
it beats the darkness.
be on the watch.
the gods will offer you chances.
know them.
take them.
you can’t beat death but
you can beat death in life, sometimes.
and the more often you learn to do it,
the more light there will be.
your life is your life.
know it while you have it.
you are marvelous
the gods wait to delight
in you.

—Charles Bukowski
 
photo by Michael Kolster

1.07.2013

parent perspectives

Sometimes I feel like no one gets it. Yesterday I had to bring Elija to the ER because of some rapid seizures. I’m having a hard time getting him to take his medication because one of his new symptoms is tongue thrusting and excessive drooling. He has to take liquid Depakote three times a day, two syringes full each time. So clearly this is a constant struggle. I told the doctor how exasperated I am with the situation and said I wasn’t sure what to do. The doctor informed me, quite matter-of-factly, “Perhaps you should try harder.”

Waterville, Maine
 
Today Ronan had several rolling seizures, and when Rick swam with him to the opposite end of the therapy pool, this day before the day of the full moon, I imagined the day when Ronan’s body will not just float away to the other side of the pool—a sight I can barely stand—but will be gone


Santa Fe, New Mexico

Lisbeth was normal and healthy until the onset of her seizures at the age of six due to a traumatic brain injury caused by a viral illness. One of the most painful aspects of this turn of events was the before and after of her/our life. We lost the little girl that she was. It was a death of sorts.  And Lisbeth has had the torture of remembering her old self—popular, spunky, bright—as compared to her new condition with constant seizures, severe learning disabilities and deficits, and days on end of post-ictal fog.

Woolwich, Maine

When he had seizures (every night, multiple times) he would hold his breath. This breath holding would alert the heart to pump even more blood to the brain, making the heart increase in size until a wall finally blew out ... My wife and I live every day missing him.

Auburn, Washington

I heard Elijah behind the sofa banging around and I assumed falsely that he was playing with his toys. My boyfriend came in the front door and screamed. I turned around and there Elijah was, his face ashen gray and his lips blue. He wasn't breathing and his body was rigid.

Waterville, Maine

Poor guy seized when on hands and knees, crashed to the wood floor and broke a tooth - could have been worse as we all hear so often. It still sucked and we are freaking out about how to protect the little guy.

South Portland, Maine

Details about Eoin: no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Newburyport, Massachusetts

Watching her adjust to the Keppra has just reminded me how powerful these drugs are. She was just so out of it during the day. She seems tired and a bit drugged. It stinks because I over-analyze all of her behaviors now ... can't just let her be tired, I am always reading into it. She struggles so much in school.

Cape Elizabeth, Maine

We tried weaning her off her med. Soon as she was off her med, the seizures came back and now she is on double the med that she was on and we still can't stop them. So frustrating. I can't figure out why the same formula of Keto diet and a certain dose of med didn't bring her back to the place where she was seizure free for so long.

Spokane, Washington

We gave her Diastat (rectal Valium) to stop the seizure ... the entire scene at the pool with strangers and my other kids freaking out just added to the situation ... I cannot separate the drama from the actual seizure ... This is awful.

Cape Elizabeth, Maine

Our daughter Savannah was healthy and typically developing until age two.  Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging.  We didn’t know she was seizing.  We thought she was choking.  Doctors called her seizures "attacks" and "spells," but never seizures, and we were repeatedly told she would outgrow them.  Savannah is now 18 and seizes daily.  She is intellectually disabled from the seizures and will never be independent.

San Diego, California

Our doctor said things to us like "If we don't get these seizures under control your daughter will lose all of the skills she now has and regress." He told us that she would never go to school. He told us that the medications that we were headed for had fatal side effects. I started to research ... and lose it.

San Francisco, California

drawing by Martha Miller

1.05.2013

coffee shop chaos

It amazes me how screaming at the top of my lungs just once can make my throat hurt for hours, as it does now.

Most weekends we go for lattes at the coffee shop in the next town over. They know us there and we usually enjoy sitting on a couch with Calvin between us or prop him up on the coffee table facing us while I feed him his snack. Today all the couches were taken so we did our best to sit at a small, round table, one of us on each side of Calvin to spot him. He enjoyed eating his snack, though insisted on arching back and careening to the side, banging the table and trying to bite it. Seldom do we ever truly relax at coffee as we are constantly doing damage control, making sure he doesn't fall, choke on a bit of food, break his teeth—like he did the other day—or grab Michael's piping hot coffee. Even so, it is a change of scenery in a place where we feel safe. But today our visit was brief.

Eventually, the cumulative frustration over trying to avoid an accident that is waiting to happen (by definition, Calvin) gets the best of me. The constant irritants—sleep deprivation, seizure worry, drug protocol hassles, spoon feedings, his persistent biting, his perpetual imbalance, his screeching and flailing on the changing table and in his high chair, the endless dirty diapers that ooze out the front, back and sides—catches up with me and I have to let it all out. Today was one of those days.

And so, having heard my indoor scream from our driveway, Michael came inside to relieve me, told me to get out of Dodge, perhaps take Rudy for a walk. I gladly obliged.

Gusts barely above freezing whipped and lashed at my cheeks as I tugged Rudy along. Tears sopped into my furry scarf and through them I watched my octogenarian friend, Woody, approach on the icy sidewalk. He asked how I was doing. "Not too good," I replied, and he could see that I was crying. We stood in the sun on the sidewalk, squinting from the glaring snow. I told him my frustrations and he took a folded tissue out of his pocket and dabbed away my tears. It wasn't the first time he'd consoled me when I'd succumbed to grief, frustration and loss over Calvin. And I'd consoled him after his wife died two years ago, been checking in on him every few days since then, been walking Rudy with him, eating the foil wrapped chocolates he keeps in a purple jar on his kitchen buffet, befriending his cats.

After my lamentations ebbed, Woody wiped away my last tear and Rudy and I went on our way. It wasn't a brisk walk, but it did me good. I didn't mind my frozen knees, peeking out between my long down coat and tall boots, spared from the cold by only a layer of close denim. I tucked my chin down to my chest and headed into the bitter wind—my tears dry, the sun on my back, Rudy at my side, and Calvin and Michael waiting for me at home.

1.04.2013

friday faves - elephant man

It’s a beautiful, disturbing charcoal dream: a silent howling woman in a slow-motion blur of hair and teeth, pounding gears and hissing steam, the haunting roar of an enraged elephant. It’s the opening scene of The Elephant Man, but the dream shares the gloom and rush of blood from a recurring dream I had as a kid, throbbing through my ears. In my dream a huge boulder thunders down a steep jagged butte headed for a tiny baby, sitting in a meadow at the base of the slope. A single hair on the top of the boy’s head plucks like a harp as the gigantic stone approaches; its looming shadow finally engulfing the infant’s oblivious form just as I wake up.

The film, based on fact and directed by David Lynch, remains an all-time favorite of mine since first seeing it nearly thirty years ago. In an outstanding performance John Hurt plays John Merrick, an abused, circus "freak" in late 19th century London, who is discovered by a physician, Frederick Treves, played by Anthony Hopkins. Merrick suffers from a congenital defect that has rendered him hideously deformed, crippled and dying.

Merrick is at first assumed an idiot, a simpleton. He lives behind a burlap bag with one oblong hole cut out to see beneath a slouching black cap. The rest of his body is hidden under a dark cape. He’s beaten, humiliated and abused by self-serving individuals throughout the film. He goes from being gawked at by circus goers, assaulted by his manager and nakedly scrutinized by curious physicians. At one point, Treves, who has taken Merrick under his wing, asks himself, “Am I a good man ... or am I a bad man?” for having subjected the innocent soul to the perverted ogling of some in high society. Yet, through all his tortures Merrick remains as grateful as one whose life had been saved, and indeed, his had been.

Watching, I found myself entranced by Merrick’s left arm and hand that appear and function normally. I was spellbound by his hand’s beauty and perfection revealed in shocking juxtaposition to the rest of his disfigured, monstrous form. For me, his hand became the oddity and I could not avert my gaze. And in his slender fingers I saw beauty and grace that mirrored itself in his gentle spirit, his kind heart, if not even in his perseverant, lopsided, dragging gait.

Midway through the film I heard Calvin whimper in his sleep. I ran upstairs to learn he had dirtied his diaper. Michael came to help. Half asleep, our sweet boy rubbed his head, stretched and writhed in a dreamy drugged-up stupor. His cheeks were pink, his hair tussled, his belly soft and smooth as dough. He’s so beautiful, I thought, so innocent, and I kissed his warm forehead. My heart winced with love as I realized, gazing at him, that my boy’s brain is as messed up as the elephant man’s contorted frame.

I wondered about that recurring dream; imagined it as some sort of harbinger or omen of what was to come, of some gigantic invisible rock that had smashed my boy’s brains to smithereens, provoking seizures, yet somehow preserving the utter perfection of his body. And I realized that these two innocent souls, John Merrick and little Calvin, are the same: both crippled, disabled, devastated, yet both filled with the kind of love and grace and beauty sometimes difficult to discern in the ordinary.

Originally published 02.27.12.

Joseph Carey (John) Merrick , August 1862 – April 1890

1.03.2013

never ever give up

This morning I came to the end of my daily journal for 2012. I've been keeping one every year since 2006, which is when Calvin was diagnosed with epilepsy. In it I write things like how Calvin slept, what his mood and balance were like, the number, size and consistency of his bowel movements, whether he took a nap, how his appetite seemed, and how frazzled I became (which is usually evidenced by a crude drawing of my squiggled face.) When he suffers a seizure I highlight the date with an orange marker then pen in a large black dot followed by the time, length and description of the seizure. I do the same on my calender, with the months' seizures tallied at the bottom, again in bright orange highlighter and black Sharpie.

This year Calvin had a total of sixteen observed seizures. I use the word observed since it is hard to know whether Calvin might be having silent nocturnal seizures or whether his hysterical laughter, eye poking, screaming or space-outs are seizures or just behavioral manifestations of physical discomfort. We don't know because he can't tell us. Last year he suffered sixty-eight fits and the year before, perhaps twice that. In 2008 he endured 160 seizures, most of them three-minute grand mal, while on high doses of three anticonvulsant drugs plus a rigorous, exacting diet. The treatments made him a complete zombie. He didn't smile for nearly two years. I thought he might never again.

I share these numbers with a mix of feelings. On the one hand I am pleased that the number of Calvin's seizures has decreased, while on the other, one seizure is one too many and the cost of the drugs that he has to take that don't completely stop his seizures is monumental. But I am also painfully aware that there are many children and adults out there—my friends' children—who suffer relentless seizures, some a few times each day, others dozens—even hundreds—every day and night of their precious, painful lives.

I woke up this morning and did a little surfing on Facebook, though I'm pulling away from that vortex a bit. While sitting in the dark, the glow of my laptop shining on my face, I saw a photo of my friend Martha's daughter, Lisbeth. She had two black eyes. I didn't even need to read what had happened. I knew she'd had a bad fall as the result of a seizure ... a thirteen minute grand mal seizure. I did go on to read that they feared her nose might be broken. A friend commented below the photo:

Her beauty shines through it all.

Then her mother wrote:

She has a Spirit of Steel, Bless Her.

A single seizure is one too many for anyone to endure. And though I am thankful that Calvin is having fewer, at least for now, I'll be keeping these children in my thoughts:

Lisbeth, Sophie, Olivia, Margot, Savannah, Leland, Hassna, Zach, Kaylee Marie, Lindsey, Luella, Elija, Twyla, Logan, Lily and all of my other new friends' children who suffer from epilepsy. And to your parents: never, ever give up.

Lisbeth, on her way home from the hospital after one of her bad seizure injuries