mackerel sky

They say it’s not black and white

but grey
I want that grey instead of white-hot
instead of black as dead earth: my boy's seizures colored both
And I have been looking for a long time
I am searching for grey that is smooth river stone
mackerel sky
Even the pure white of soft wind would do
I hide the black
—inside—
that sometimes spews out swift red swathes
I want the white of ocean foam
sand dollar
my boy’s smile
not the blinding white scorch of relentless electric screams
I am looking for the grey that lingers
soft like a ribbon ... a dream
smoke
My white is thin and brittle
chipped
the black rottenness glistening beneath
stinking, putrid
Give me simple grey—easy on my mind’s eye—
give me mackerel sky

photo by Michael Kolster

mysteries, yes

Truly, we live with mysteries too marvelous
  to be understood.

How grass can be nourishing in the
  mouths of the lambs.
How rivers and stones are forever
  in allegiance with gravity
    while we ourselves dream of rising.
How two hands touch and the bonds will
  never be broken.
How people come, from delight or the
  scars of damage,
to the comfort of a poem.

Let me keep my distance, always, from those
  who think they have the answers.

Let me keep company always with those who say
  "Look!" and laugh in astonishment,
  and bow their heads.

—Mary Oliver

photo by Michael Kolster

question and answer

"How old is Calvin?" the first child asked, and when I said that he was nine they giggled, then one girl pointed out that Calvin is older than most of his classmates. When I told them that Calvin's brain wasn't formed right, they giggled again, probably, to some extent, nervously.

While I sat in a chair at the front of the class Calvin squirmed in Mary's lap. I tried my best to describe epilepsy to the students who were huddled around me on the floor. One child asked what a seizure looks like, so I attempted to demonstrate an absence, a drop, a partial and a tonic-clonic. "Have you ever had uncontrollable shivering or twitching muscles? Some seizures are like that," I said, "but stronger." I went on to say that during many seizures you lose consciousness."Do you know what unconscious means?" I asked the group, and most of their faces went blank. So I told them it's kind of like sleep. Then a few children chimed in:

"Like when you faint?" asked a girl who'd been in Calvin's first grade class.
"Like when you get knocked out? You can get knocked out when someone punches you in the teeth," one boy remarked.

The questions about Calvin and about epilepsy streamed from their mouths for thirty minutes, often punctuated by their own experiences of illness, of losing teeth, of knowing someone with cancer, of sleepwalking. Their questions were good and they were varied:

Why does he wear that harness?

How come he makes those noises?

Does he do any sports?

Will he ever be able to talk?

When he's, like, eighty-four years old, who will take care of him?

What happens when you have a seizure?

How did you find out he needed glasses? 

Is he colorblind?

When does he go to recess?

Does Calvin sleep in a regular bed?

Can he feed himself?

How does he get dressed and undressed?

Can he say any words?

How does he get on and off the bus?

Does he have play dates?

Can he brush his teeth?

Does Calvin use a highchair?

Can Calvin understand what you are saying?

Can I hug Calvin?

I told the kids that Calvin is the best person that I know, that he doesn't have a mean bone in his body and that he is loving and affectionate and, beyond some stubbornness, he tries hard to do his best at things. I told them that he can sign for the word "hug." I told them that they have the opportunity to set a good example for the rest of the kids in the school by treating Calvin with love and kindness and, too, by treating all kids who are different from themselves with the same warmth and acceptance, "because we are all the same at heart."

I explained, when they asked if Calvin would ever be able to talk someday, that I don''t think he will unless we can find a cure for epilepsy so he can stop having seizures and stop taking the drugs that slow down his brain, slow down his learning and make him dizzy. And while I was talking, I glanced over at Calvin to see him giving Mary, his one-on-one, a big hug, and the kids looked over, saw the same, and some of them even smiled.

Calvin with his one-on-one, Mary, December 2011

friday faves - kick ass chicks

I shared dinner the other night with a new friend. We huddled up to the bar of our local sushi joint and were pampered by the lovely young, vivacious manager, wearing a peachy summer frock. We noshed on sushi and tempura while drinking cold fizzy unfiltered sake from tiny cobalt glasses. Some boisterous college students crowded around tables behind us dunking over-sized straws into large bowls filled with rum and fruit juice.

As the night wore on, and a pile of empty edamame pods grew, we talked of reunions, old friends and family, then the conversation turned to our boys and eventually to the concept—the reality—of our grief and hardship. I asked her how having a child with a rare syndrome who might not live out his childhood years has changed her, knowing well my own constant and honed awareness of Calvin’s mortality. The one underlying thread that came through in her words, and was perhaps even invisible to her, was her amazing strength. Maybe she was born with it. Perhaps she acquired it in high school or college, but more likely much of it was newfound. I think the chick can kick some major ass, especially when it comes to her boy.

She went on to tell me how, before her son was born, she was quieter, maybe even timid. But she soon learned a few lessons that mothers and fathers of chronically sick kids learn when they go to hospitals and inevitably, somewhere along the way, receive poor, even negligent, treatment. She learned to advocate. She learned to be assertive. I knew exactly what she was saying. I’d been on the receiving side myself, or I should say, that poor Calvin has.

I recounted for her the first time Calvin was admitted to the NICU for status epilepticus, a dangerous, sometimes fatal, prolonged seizure or series of seizures. He was little, only two and small for his age, and an adult neurologist put him on his first anticonvulsant drug. Michael and I requested the drug literature and while reading through it, as Calvin wailed and writhed and screamed raving mad like we’d never heard him before, we realized he had been given twice the appropriate dose for his weight. We were beside ourselves. And after alerting the nurse the neurologist changed the dose without apology or recognition of error.

My friend then listened to me describe the painful, bloody emergency intubation that my two-year-old Calvin had to endure without anesthesia, while he was breathing. His respiration had temporarily stopped during a seizure, which is not uncommon, but had resumed and yet the intubation was deemed urgent by a hospital physician who had never met Calvin. It was carried out amidst Calvin's thrashing and terrified shrieks of pain. I told my friend about the time it took two nurses and a doctor over thirty minutes to successfully insert an I.V., during one of Calvin’s prolonged seizures, in order to administer emergency medication to stop it. Why they didn’t jab an intramuscular drug into his thigh (which at the time I didn’t know was possible or I would have asked for it) to this day I do not know. Upon first arriving at the emergency room I had apprised the medical staff that Calvin was a “hard stick” so to please give us their most talented IV specialist. My request, for whatever reason (lame) was not heeded (and never has been in subsequent circumstances) and Calvin suffered—greatly—a forty-five minute seizure, far longer than he might have if the drug had been delivered in a timely manner.

So, my friend and I exchanged horror stories about our underdog kids who can’t really walk completely by themselves and can’t talk, whose health is significantly compromised, whose lives seem to balance on a thread—from here to tomorrow—perhaps equal to our own strength. These stories might have seemed completely inconceivable except for the fact that we have lived them. As I sat next to her at the bar, looking into her clear, bright eyes, her sassy earrings jangling to and fro as she bobbed her curly head, I realized that I was looking into a dark mirror, one that looked back at me and said, yes, I know ... I know. And as we left the restaurant, our bellies full and warm, my adrenaline pumping, all I wanted to do was to go out there into the world and kick some major ass.

Original version published 09.12.11

Calvin, 2006

class visit

Today I'll go to visit Calvin's third grade classroom, the one he mainstreams with for less than an hour on most days. The rest of the time he attends the Life Skills classroom with other kids like him who can't manage on their own to do the most basic things.

I get nervous thinking about sitting in front of a class with twenty wide-eyed munchkins peering up at me, Calvin sitting to the side or in back in his one-on-one's lap. The kids ask me questions like:

why does Calvin wear a diaper? what's that harness for? will he ever learn to talk? how come he drools so much? why does he do that thing with his fingers? will he always have epilepsy? how come he makes those noises? why does he flap his arms? can he read? can someone die from epilepsy?

I'll try to explain to them about epilepsy, about the seizures and about the drugs, as best I can without scaring them. I'll try to describe Calvin in a way that they might begin to understand, in a way that will warm them to him.

But as the years pass and the kids get to that age of teasing and name-calling and seeing differences and judging, I worry they'll no longer embrace Calvin as one of their classmates. I worry that they'll start getting those signals from the world, from their peers, from some of their parents, that "other" is something to be feared, something to mistrust, something to keep at arm's length. But I'll keep hoping that the world is changing, keep hoping that I am wrong, and I'll keep trying to help them to simply understand.

lady of the lake

At times, when I am low, down and dark, I sit with my feelings and thoughts, then I cast them out in words, not so much as a net but as a kind of beam, however narrow and dim. As I write I think to myself, perhaps I can touch someone else who might be feeling similarly for their own reasons: someone with an ill child, a struggling marriage, a thankless job, a broken body, an empty pocketbook, a lost soul. And I find that when I share my innermost feelings—these dark embers—my readers ... they restore me. Their words and the energy of a moment come back to me in spades. One such reader gave me this:

Christy Brave. Christy Fierce. I trust your every word because you ask 'why me?' I offer them to the Lady of the Lake and I share them with my adult community college students who feel you and need to hear that it's ok, even good, to ask 'why me?' That there is no answer to that question, but there is the asking, and in the asking you have souls reaching for yours with love and understanding. And your words heal whole lives. And those lives can now hear 'why me?' In the voices and even the silences of others and they reach, they reach too. You, Calvin, you are healers. Your words and lives have touched many. I have seen it. You have been the cure. And I deeply believe that the cure for you, for Calvin, is in the hands of someone who has already been given the gift of your hands, of Calvin's. I believe there is a cure and I share your words and lives as far as I can reach trusting that some day they will reach the hands of the cure that will reach back to you and to Calvin, in deep gratitude for the great healing love of your lives.

And though I am not necessarily brave, but perhaps fierce, within her words indeed I find a cure, a cure for my down and dark, a cure for my hopelessness, like the glow that shimmers off the face of dark waters. If only it could be so for Calvin. But I hold out hope that perhaps my reader, this wonderful, loving lady of the lake, speaks the truth.

photo by Michael Kolster

sobbing

Sobbing, I worry, not so much anymore about the widening gap between what is and what could have been, but of the electrical storms that race through my boy’s brain and body and of the drugs that do the same.

I used to fret about his failure to thrive, his relative blindness, his flaccid tone, his missing white matter, his reflux, his colic, his inability to calm.

Then my angst turned to his protracted development, his hypothyroidism, his trouble rolling over and holding his head up, the fact that he couldn’t crawl or walk or talk by the age of two.

But now, and since then, the weight my psyche bears is centered in the seizures and in the drugs meant to thwart them. Because it’s not as simple as one might expect. The seizures loom around every corner. The drugs change him, make him hyper or listless, manic or zombie, hungry or indifferent, constipated or loose. They make him dizzy and weak and restless and irritable and headachy and probably nauseous. Take them away and he’s a different kid. Take them away and he suffers withdrawal. Take them away and he seizes. Take them away and he loses skills he worked for months to achieve.

Sobbing, I worry constantly over my nine-year-old boy who is wordless and weak, imbalanced and precarious, wants something but can’t say what, in pain and discomfort but can’t tell us why, can only cry or whine while we search frantically for what hurts.

Sobbing, I wonder how things can go on like this. Sobbing, I worry, and though I wish things were different and I wonder what happened, I try not to ask, why me?

photo by Michael Kolster

what is a saint?

What is a saint? A saint is someone who has achieved a remote human possibility. It is impossible to say what that possibility is. I think it has something to do with the energy of love. Contact with this energy results in the exercise of a kind of balance in the chaos of existence. A saint does not dissolve the chaos; if he did the world would have changed long ago. I do not think that a saint dissolves the chaos even for himself, for there is something arrogant and warlike in the notion of a man setting the universe in order. It is a kind of balance that is his glory. He rides the drifts like an escaped ski. His course is the caress of the hill. His track is a drawing of the snow in a moment of its particular arrangement with wind and rock. Something in him so loves the world that he gives himself to the laws of gravity and chance. Far from flying with the angels, he traces with the fidelity of a seismograph needle the state of the solid bloody landscape. His house is dangerous and finite, but he is at home in the world. He can love the shape of human beings, the fine and twisted shapes of the heart. It is good to have among us such men, such balancing monsters of love. 

—Leonard Cohen from Beautiful Losers 

my little saint
photo by Michael Kolster

night spells (with video)

It appears they’ve returned, the ones I so fear, the night spells. As far as I know he hasn’t suffered them in years, so to have them two nights in a row, both around three a.m., brings me down, to say the least.

I woke to the sound of Calvin making a sort of swallowing, smacking noise. I grabbed the mini flashlight and shined the dim beam on his face. He did not respond. I turned the light on in his room but he did not squint. Instead, his eyes remained fixed and wide open, though not appearing to see. “Michael,” I called, “I think he just had a seizure,” and when he came I pointed out the wet spot on the sheet where Calvin’s face had been, and the familiar, feeble way he was trying to suck his thumb. So I crawled into bed with him, and for the rest of the night—both nights—I felt his body, snuggled into mine, shiver and shudder in fits and starts. We call them aftershocks.

He’s been sick with a cold and, a week prior, we’d eliminated one of his anticonvulsant drugs. It could be that the reappearance of these nighttime seizures are from withdrawal (a child in withdrawal? regrettably not his first time). Perhaps they’ll mellow out over time. Or maybe he has simply outgrown his dose of one of the other meds. Hard to tell, impossible, frankly. So we did what I hate to do, which is to increase one of his two anticonvulsant drugs, the benzodiazepine, the addictive one, the one that makes him drool and who knows what else. We aren’t prepared to try the medical marijuana yet. We still need to find the right strain, though we are well on our way, which means it might be weeks or months, at the most. In the meantime, though, I fear Calvin will have a seizure in the middle of the night that I don’t hear, that he’ll suffocate or succumb to SUDEP (sudden unexplained death in epilepsy) which is not as uncommon—especially for a boy like Calvin—as some recent media has portrayed.

And so we fill our little nine-year-old with more drugs that make him dizzy and fall off balance, that put him that much farther away from being able to walk without our assistance, that make him have headaches, nausea, insomnia and incessant drooling, not to mention what they might be doing to his organs, including his brain. I cut the pills that are nearly impossible to cut without crumbling, because the drug company discontinued the smaller dose pills that are easier for children to titrate and to take. I worry about his behavior, his contentment, his development. I remain on edge, always, because without much doubt, despite taking these drugs, Calvin will continue to seize.

kennebec

Twenty miles north of us is a town called Richmond, which is a stone's throw from a chunk of wooded land called Swan Island that sits in the middle of a river called the Kennebec. Michael and I spent part of the day there after launching our little boat in its high tidal waters. I needed a day out in nature, away from the house, the robocalls, the insurance papers, the computer, the medical research, the sick child and the deaf dog who poops everywhere now, including in the house.

Lately, I’ve been feeling a bit trapped, unable to get away to see my mom or my beloved San Francisco or my friends in Seattle, New York and Los Angeles, or the twin pines up north on the coast at the Lookout. And though I love my home here in this Maine town, compared to what I'm used to, it is small and remote.

We cruised north on the river a spell before bending around the tip of Swan Island hugging its rocky shore, then Michael cut the engine and we drifted. White pines stood rugged and green against a ridiculously clear blue sky. Fish jumped but eluded Michael’s snare. Some sort of weasel, otter or beaver slithered into the water from her weedy cover when our boat got too close. An osprey perched himself atop a naked trunk as ashen and dead as bone.

“Is that the wind through the trees?” I asked Michael, thinking I might be hearing traffic. Its soothing hush could’ve put me right to sleep, that and the crickets calls. But instead I knelt at the bow of the boat searching for hidden rocks that glowed amber through the water’s tannins. Just above the tree line a pair of juvenile bald eagles soared, one appearing to grasp something in its talons.

We made our way through a narrow channel notable to me for its quiet and for the leaves shimmering like paper coins in the wind. Just then a Great Blue Heron, spooked by our approach, sailed off into a protected hollow several yards ahead. Its size and grace struck me, its solitude something with which I could relate. The mouth of the channel opened wide into a reedy part of river, green buoys marking its channel. In the shallows the grasses grew thick and gold like a carpet sandwiched between the royal blue of water and sky. I looked at Michael and smiled, told him I liked the view, including him, and my eyes watered a bit with the plain and simple joy of existing in that moment, in that place.

Under the expansive sky I thought about my insignificance and the hundreds of billions of galaxies in the universe. I considered the tremendous distance in light years they are from us and from each other, then thought how lucky I was to be alive. How short this life is, I thought, and how full of beauty—beauty that, if I could, I’d miss seeing after I die. Then I thought of Calvin, who has no concept of his place in the world, this world of immense grandeur, and wished that he could appreciate this sort of thing, wished he could fish with his Dad, ride the bow with Mama, and skip a stone across a glass river called the Kennebec.

friday faves - humpty dumpty kid

Humpty Dumpty sat on a wall,

Humpty Dumpty had a great fall;

Threescore men and threescore more,

Cannot place Humpty Dumpty as he was before.

—English nursery rhyme

They keep coming, these seizures, reliably, awfully, no matter what we do to halt their progress, dampen them like hot embers being fed a dry breeze. They’re a squirrely moving target, at a thousand yards in high winds, a low sun—blood-red and blinding—nearly impossible to hit, no silver bullet to employ.

Every time Calvin has one (I fear he did again in the middle of the night last night—though I can't be completely sure—and it’s only day eight since his last one) I think of that eighties anti-drug television commercial with the sizzling egg in a hot pan, “This is your brain on drugs,” the voice-over says. I can only imagine that the unharnessed electrical activity ravaging Calvin’s brain must be frying it inside out, like a microwave or a white-hot poker jabbing, burning and scarring his delicate, developing tissue. Every seizure must be like a mini nuclear bomb, the millions of tiny molecules and cells in his young, growing brain—his brain that is trying so very hard to learn essential, foundational things—getting scrambled into some unrecognizable, unsolvable puzzle that can never be put back together again or made sense of. My poor little Humpty Dumpty kid.

The lessons, skills really, that Calvin is trying to learn just keep getting interrupted, like a parent trying to digest a newspaper article while every few minutes his kid, interrupting, yanks on his shirtsleeve to ask him a question, “Daddy, Daddy, Daddy.” The neuropathways, which my son is so lacking in, seem to get tangled in menacing knots so tightly the arteries are simply cut off, leaving a series of dead ends—roads that go nowhere—abandoned, left to crumble, decay and wash away with the next flash flood that occurs inside his precious skull.

I see that frying egg every time we increase Calvin’s anti-seizure drugs, too. On top of the debilitating, brain-rotting seizures go the spuriously innocuous anticonvulsant medications meant to stop the seizures by slowing brain waves. Slowing brain waves. That equals slower thinking, slower reaction time, slower development. At what point, since we keep having to increase Calvin’s seizure meds because there is no cure for epilepsy, will his development simply plateau? Will he be locked in at a one or two-year-old level for the rest of his life? Will he regress? Will he die from a seizure that just never stops like a runaway train that derails above some dark, craggy ravine, like poor Humpty Dumpty who fell off of a wall?

Not if we can find a cure. Give to cure epilepsy: http://www.calvinscure.com

Original version (amended for today) published September, 2011.

sea change

So hope for a great sea-change

On the far side of revenge.

Believe that a further shore

Is reachable from here

Believe in miracles

And cures and healing wells

—Seamus Heaney from The Cure at Troy

photo by Michael Kolster

the questionable journalism of gregg doyel or gettin' cheeky

After Minnesota's college football coach, Jerry Kill, suffered a seizure on the sideline during last Saturday's game, several journalists wrote about it. None of the authors of the articles that I have read seem to understand much about epilepsy. Sadly—and though I am angry—I am not surprised.

The article that this excerpt was taken from, asking whether (suggesting that) coach Kill should resign—ostensibly so that fans won't have to risk seeing a seizure or death from a seizure on the sidelines—was written, under what I see as the guise of sympathy, by Gregg Doyel of CBS Sports. He says:

But make no mistake about this, too: Jerry Kill's epilepsy is a major concern—and not just for Jerry Kill.

There will be people, maybe even most people who read this story, who will fall back on the default position that Kill is a grown man; if he wants to risk dying on the sideline—doing what he loves—that's his choice.

And you know what? In a vacuum, that's 100 percent correct. If Jerry Kill is OK with the risk to himself, who are any of us to tell him he's wrong? That's not our business.

But this issue, and these seizures, aren't happening in a vacuum. They're happening on game day, often right there on the sideline. This is an issue that's bigger than Jerry Kill and the personal risks he's willing to assume. What about the risks everyone else assumes? What if he has a fatal seizure during a game, in full view of the stadium?

That's our business.

I was so angered by what Doyel wrote and by his uninformed, discriminatory and back-assward opinion about epilepsy's impact on society, that I posted an impassioned comment that may perhaps have been better tempered by pausing before hitting the send button:

Mr. Doyel, What risks are you talking about, you ignoramus? Your journalism is so irresponsible it is shameful. And your readers are fairly uninformed about epilepsy, too. The fact that epilepsy affects nearly 3 million Americans (1 in 100), that 1 in 26 will be diagnosed with the disorder at some point in their lifetime, that 50,000 people die each year from epilepsy and related causes such as drowning and head injuries—which is more than die of breast cancer each year—the fact that at least 30% of people with epilepsy do not have their seizures controlled despite managing their condition by taking medications, that those who are lucky enough to have seizure control live a life tethered to anticonvulsant drugs and their heinous side effects, has nothing to do with whether Kill should resign, and has has everything to do with educating the public about epilepsy. The risk to the public having to see a seizure on the sidelines, even a fatal one, is nothing more than ZERO. NO RISK. And until people start to understand the disorder, its stigma, its pervasiveness, its paltry lack of funding, the rest of us will have to risk reading reckless journalism such as yours.

And though I am not proud for having called him an ignoramus, I feel as though I had to set the record straight with regard to his absurd notion of what he calls risk.

Revisiting the article today, I was pleased to see a flood of other comments by like-minded folks chastising Mr. Doyel for the offensive, small-mindedness of his commentary. But Doyel, in what appears as either cowardice, humiliation or pure and simply apathy, chose to reply to but a few comments, in one of which he says:

People have the right to work, absolutely. But to work ANY job? I don't know. Some jobs require, I don't know ... sensitivity?

To which I remarked:

yes, some jobs require sensitivity, of which you CLEARLY have none, nor do you have your facts straight. come on, dude.

I don't expect to hear back from Mr. Doyel, nor am I interested in listening to him stand his ground on a subject about which he is clearly, and comfortably, in the dark. Really. I'm thinkin' Neanderthal.

Gregg Doyel wielding small and primitive tools

dream seizure

I woke myself up in a worried sweat calling out Michael's name. He didn't hear me. I'd been dreaming about Calvin who was strapped into his industrial johnny-jump-up spinning to his heart's content as he often does. Suddenly, my boy's brain got caught in a snare, his soft body going rigid and steely, then racked with tremors. Calvin's convulsions were so violent, his body so twisted in contortion, that I couldn't release him from his jumper. It held him fast as if he were bound to it. I called to Michael for help as my son jerked and frothed and began turning blue ... and in doing so I woke myself up.

Our bedroom was quiet and lit only by a bit of moon that shown through the trees. I listened intently to the baby monitor. All was still. I got up to go to the bathroom and on my way back grabbed the tiny flashlight and shone it through the netted canopy over Calvin's bed. There he lay, still as a stone and as beautiful as the moon itself. I flashed the light on his ears to ensure my boy was pink. He was.

My dream had not come true, as it has in the past. It was simply a dream seizure, which I hope some day will be the only kind we must endure.

photo by Michael Kolster

ignorance

Last Saturday my brother Scott, who is a senior associate athletic director at the University of Arizona, sent me an email with a link attached, telling of the seizure that Jerry Kill, head football coach at the University of Minnesota, had on the sidelines during that day's game. I immediately went to the link, skimmed the article and read some of the comments. This is what some of them said:

"Jerry, it is time to hang jock."
"All of us Viking fans have enough seizures watching them!!"
"He should retire before he dies on the sidelines."

To each of them I replied, “you and your ignorant comments suck. learn something useful,” and then I attached the link to my blog.

I went back to read the article more closely and learned that Minnesota’s athletics director, Norwood Teague, had said that he "hoped Kill would do a better job of managing his condition.”

The clueless remark made me as ill as the rude comments following the article. Would any of these statements have been made if a cancer victim had collapsed on the field? Doubtful.

It pains me how much epilepsy is misunderstood, stigmatized, made fun of, underestimated, and that some people hold the victim culpable for their behavior and management of their disorder. It's not that simple. If only everyone could be cured or, at the very least, have their seizures controlled by medication. But the sorry truth is that at least a third of individuals, like my nine-year-old son Calvin, continue to have seizures despite ingesting massive amounts of medication, all of which have heinous side effects and some of which include making seizures worse. Even some of those compelled to have brain surgery continue to have seizures and must remain on medication. It is estimated that, annually, 50,000 Americans die from epilepsy and related causes such as drowning and head injuries, which is more than die each year from breast cancer. And yet it remains a mere blip on the screen in terms of awareness, compassion and funding.

I want to jump through the computer, grab these ignoramuses by the scruff of their necks and shake the living daylights out of them, telling them of the injustices of epilepsy. I'd like to smack them down and wipe those glib smirks off of their lame-ass faces once and for all. Try living at my house for a week, I think, try walking in someone's shoes who has epilepsy or cares for a loved one who does. Then see how you feel.

Sadly, one in one hundred Americans have epilepsy, which means that most of us likely know at least a handful of people who suffer from the disorder; we just aren't aware of it. People with epilepsy often keep it hidden because of fear of discrimination, bullying, shaming and ostracization. That shouldn't be the case, and with many of its sufferers still in the closet, it makes advocacy that much harder.

Wake up America. One in twenty-six of you will get the diagnosis some day ... or your mother, your father, your sibling, your wife, your husband, your child. Epilepsy is a terrible, life-threatening disorder. Have some compassion y'all.

To donate to CURE epilepsy go to: http://www.calvinscure.com

Mark Vancleave, Minnesota Daily

breathing underwater

I have recurring dreams, some unsettling, others uplifting and many that are neither, just a chain of seemingly unrelated mundane dream happenings. One kind of dream I have isn’t recurring in terms of plot but more in terms of its nature, its sensation, and my awareness of that feeling. The sensation I enjoy is breathing underwater. It’s kind of akin to dreams of flying, like those in which I rise up on my toes and gently, effortlessly lift off to soar. It’s not only the flying that is so amazing and wonderful, but the utter confidence that I can do it.

In the dreams where I breathe underwater it's unclear if I am submersed in a lake, or river, or an ocean—perhaps none of these. Rather, the existing landscape simply morphs into an underwater scene as I float weightless, suspended in a tepid current hovering over a rolling, verdant terrain. For a fraction of a dream-second I pause, conscious of the fact that there is no air, that I am sheathed heavily in water. Then slowly, deeply I inhale through my nose. My lungs drink this river so fluidly and naturally—like air—my mind and body surrender to its current, without a care in the world, only the faith that I can breathe. Everything melts away revealing only this serene feeling, this Utopian state, this Xanadu.

I often wonder if my dreams take me under because of the years I spent playing in the water holding my breath for sharks and minnows, diving for pennies, or trying with my lithe, flaxen-haired teammates to capture a greased watermelon, which by its surreal, spatial, slow motion, half-floating-half-sinking manner eluded our grasp.

My boy Calvin used to experiment in the bath holding his breath—before the drugs caused him to be so manic—dipping his face under water for a time. He'd come up red and take a deep breath. It scared Michael the first time he saw it, and he grabbed for Calvin's arm instinctively. I thought it was cute, my little fish-pie taking after his mama with a fearless joy of water. I’m glad he's tried learning these laws of nature, while at the same time defying them—defying gravity—with the water's buoyancy.

I wonder if Calvin dreams of breathing underwater, too. I hope he does.

photo by Michael Kolster

goodbye banzel

Goodbye Banzel. It has not been nice knowing you at all, and it pains me to think about the suffering you might have caused over the past two-and-three-quarter years as we—holding much hope—amped you up then painstakingly weaned you off. I hate long goodbyes, but at least I'll never see your sorry face again.

deluge

By evening the storm had moved in, though I’d felt its burden all day. It began as heat lightening, piercing the black tangle of trees and illuminating bits and pieces of sky in staccato. Before midnight the sky cracked open, its rain hammering down like nails. I rushed out of bed to close windows, my naked form lit by strobes, while repeated claps of thunder pounded as if in my chest.

My boy, too, had seemed to feel the weight of the coming storm, his first steps of the morning weak and wobbly. He’d come off of the bus flushed and lacking his usual smile, then he stumbled and, later, failed to hug the house carefully to aid him down the steps of the deck. Instead, he dangled like a puppet from the harness in my hand.

The temp outside got close to ninety. I checked the barometer looking for low pressure, studied the calendar expecting a full moon to be nigh, then reviewed my journal which read:

slept restlessly 
head-rubbing
fingering
awake from 3:30 am
napped 7:15 am - 8:15 am
pulling my hair
aggressive
floppy

And then I added:

SUSPECT SEIZURE TONIGHT/SOON.

Yesterday was little different; the rain came in a deluge at times. Calvin continued to walk poorly, like a noodle in his shoes, but then became spastic and agitated in the bath. I gave him his evening seizure meds a few minutes early, thinking it might make a difference. It didn’t. The seizure came anyway, and as he sat on the Berber mouthing his toys, I watched it creep in like a bank of clouds. His face flushed, then drained as the seizure took hold. With his mouth slung open, his expression appeared that of a child frightened by the storm, and when I laid him on the bed I could swear he looked as if begging me to make it stop.

Five minutes passed and the seizure seemed to ebb, so I carried Calvin to his bedroom, his limp body sifting through my hands like sand. As I felt his sagging weight I thought, this is how he’d feel if he were dead, and indeed his face appeared pale and blank as a corpse.

Throughout the night the torrent pressed on, rapping on Calvin's window as he slept. Lightening lit the night sky in fits and starts; Just like my boy’s brain, I thought. And I laid there in bed and wished the rain would wash away all of the hurt, all of the fear, all of the scars, and carry them out to sea.

photo by Michael Kolster

disenfranchised

Call me a Pantheist or a Naturalist, that is, if you must rely on labels. And, call me disenfranchised. I know the feeling.

Having grown up in a Catholic family—though not a staunch one—as I moved into adulthood I found that, deep in my heart, I no longer believed what for so many years the nuns and priests had taught me about God. I could no longer subscribe to what I saw as His male facade, His anthropomorphic qualities, His kingdom of heaven, His static rule, His judgement, His bias. Moreover, I discovered a world wracked with war, disease, famine, poverty and exploitation which lead me to believe God as neither a referee nor an active participant because, I thought, why do the people of the world continue to suffer when millions of them go to bed every night and wake up every morning beseeching Him to make things right?

I soon came to a place where I realized that the only thing I could believe in, rely on, find solace in, was nature. My father had taught me as much, though through actions, not through words. My eyes finally opened to the beautiful interconnectedness of all things—the trees, rivers, rocks, animals, stars, planets, people—and everything made sense, fell into its cosmic place. I see the universe as one big living organism and I see my part in it, and it in me. In doing so I realize that nature itself is divine, and it gives and it takes but—most sublimely—without judgement. And I’ve met many people with similar beliefs—good people, moral people, kind people, compassionate people, honest people, generous people—and I realize that belief in God isn't the bedrock of virtue. I understand, too, that belief is personal and intimate and begs respect.

But what I don't understand or appreciate is others' desire to impose their belief systems on me, or to imply—whether consciously or not—that only the devout are moral, which is why I feel somewhat disenfranchised when religious dogma, blessings and prayer fly into political rhetoric, into social doctrine, into our public schools and text books, into our Pledge of Allegiance. When I said as much by sharing a very thoughtful Huffington Post video on Facebook, I got a response from a friend who couldn’t fathom why anyone would want to change the Pledge back to its original form, thus omitting the “under God” part (which was added in 1954 as a reaction to Communism.) When I asked her to explain her logic she replied:

No I can not explain. As in so much in life there is not an explanation. God is in it and that is it. With great love and trust. & God has never hurt anyone so I do not see the problem.

And while her sincere and passionate comment made me smile and even relate on some level, I still couldn't help but think that if she'd been an Atheist, Hedonist, Pagan, Agnostic, Bright, Humanist, Freethinker, Naturalist or Universist, she might've felt differently. But she had already told me:

I can not imagine feeling different.

I opted to end the thread with her comments, and ponder them for a while.

In pondering I realized that, to some, what I believe doesn’t matter, and that within parts of society there exists a certain lack of creative capacity in imagining, embracing, respecting and upholding alternative tenets that don’t endorse belief in a God and/or believe those opinions don't count. 

So until people look broadly and decide that they want to work toward living in an inclusive, egalitarian society, I imagine I’ll continue to feel disenfranchised. I’ll feel disenfranchised because my belief system is consciously disregarded by others. Disenfranchised, too, because of my disabled child, Calvin, and the lack of programs for children like him, disenfranchised because of Calvin’s epilepsy and its egregious societal neglect, and disenfranchised on behalf of my friends who are gay or black—or any other minority—or elderly or female or migrant or poor or perhaps some worthy, virtuous individuals who don't happen to believe in God.

"I pledge allegiance to my Flag and the Republic for which it stands, one nation, indivisible, with liberty and justice for all."
—Francis Julius Bellamy, 1892

sharing the load

As kids, one of the first things we learn from our parents is to share: to share our dolls, toy cars and Legos with our siblings, to share our favorite snack with friends, even to share time on the playground swing set with a stranger’s child. Then, as soon as we can speak we are taught to tell the truth. And when we enter school we are told not to cheat on tests, and even if we succumb to the temptation (I did a few times) we know in our hearts that it is wrong. In sports, we learn that an unfair advantage, such as steroid use, is unacceptable, and that everyone should have the same opportunity at winning the gold. And as I think about 9/11, its eleventh anniversary upon us, I remember the way that the people of New York—of our nation—came together, helped out their fellow man, the strong pulling the weak out from under the rubble when they couldn’t get out by themselves.

What’s so different today? I wonder. Where did these core values, these basic premises of human decency get so blurred, so skewed, so completely forgotten by some, by those so eager to get ahead that they'll stomp on the backs of everyone else along the way, never once looking back to lend a helping hand? I ask myself the same question over and over and over.

Readers sometimes comment on my blog, noting the theme of how it takes an entire village to raise a child. They understand that I find strength in friends and neighbors who sometimes help me with the burden of caring for my disabled boy. I’m better for it, and my friends tell me that they are too. I can see in their eyes the great reward in knowing they are helping me out. And they don’t have to; most have children of their own to rear, stresses of their own to face, problems to solve, desires to sate. But no matter who we are, we each have a gift—something special to offer. What a shame if we kept those gifts to ourselves, tucked them away into little boxes and shoved them under our pillow or to the back of a drawer for safe keeping.

Since Calvin’s epilepsy diagnosis over seven years ago, one of my greatest rewards has become helping other families whose children have just been diagnosed with epilepsy, Down syndrome or other debilitating neurological conditions. Through Calvin, I have learned that I, too, have a gift. I want to share it with the world. And what an amazing world this could be if each and every one of us shared a bit of what we have—whatever that might be—with others. If only we could think of this wonderful melting pot of a nation as our precious village, one in which we look out for each other, help each other out, lift each other up. I imagine Bedford Falls, the town depicted in Frank Capra’s film It’s a Wonderful Life where—because of one humble, honest, hard-working, self-sacrificing man—others who’d had a difficult start in life, who were down on their luck, could get a leg up. And those recipients in turn contributed and enriched the community with their talent, hard work, brotherhood, generosity, gratitude, hope, compassion and the jewel of a different perspective.

I think back to April 2012, to the time when Michael was away for over three weeks and Calvin was at his all-time worst behavior, screaming much of the time, not eating, yanking my hair and flailing wildly in his high chair. I couldn’t be sure of the source because he can’t tell me, but I blame his anticonvulsant drugs (and now I know it to be true.) In Michael’s absence, my dear friend, Akiko, flew up from New York to help me for a long weekend. On the heels of her departure my sister, Caron, came all the way from San Diego and stayed eight days. She watered the plants, vacuumed the house, dusted the furniture, washed loads of laundry, fed Calvin, changed his diapers, walked around with him, made me laugh and very simply liberated me. On each of the other weekend days after my sister left, different girlfriends came to help me take care of Calvin for an hour, or so, so that I could get some chores done and to give my shoulders, back and psyche a break. And, there is no doubt in my mind that if I had asked any one of my neighbors the same, they’d have done it too.

Camaraderie and support: that’s where it’s at: the reaping of the many rewards that bearing the load together brings, of being responsible to each other and for each other. So, how the heck do these ideals gets lost on some people? I can only imagine that when one hides something away for fear of losing it, it’s easy to forget that it’s even there to give.

photo by Lyle Owerko–Gamma

gratefulness

you. sunshine. roses. quiet. nurse. hosta. time. almonds. birds. neighbors. security. husband. chocolate. seizure-free days. wine. date night. calvin. escape. motorcycle. wind. rivers. girlfriends. drug reductions. trees. prose. poetry. fiction. hemmingway. bourbon. rain. green. sleep. memories. visitors. clouds. lobster. dreams. reflection.

potential

From behind, I watch Michael pin them on their backs while stabbing them each through the head. For a moment, they squirm as he draws the knife into the belly of their shells and through their firm white flesh. Then, he gathers fresh chives from the garden while I make a salad slicing in a handful of yellow, orange and red tomatoes from our neighbor’s garden.

I ask if it bothers him to kill them like that. “You gotta kill them anyway,” he replies, and I imagine the familiar rattling lid atop a steaming pot of lobsters—lobsters that have been randomly plucked from the frigid Maine waters, perhaps having not yet reached their full potential.

And then, for whatever reason, I think of Calvin who at some point in his development ended up missing a significant amount of the white matter in his brain, and thus will end up missing every milestone never reaching his full potential as a boy or as a man.

My mind segues into the questions I often ask myself: what might happen if Calvin dies before reaching puberty or adulthood? succumbing to epilepsy’s prolonged and lethal seizures. What if we’ll one day wake to find him still and cold? a victim of SUDEP (sudden unexplained death in epilepsy.) I wonder if, in that case, I’ll feel twice robbed, first having a child born with so many afflictions, and second if he dies early. Would it all feel such a colossal waste? having been so goddamn hypervigilant about his health, his safety, his various therapies for growth and development and seizure control—watching each step, minding every corner, suffering each seizure, counting each pill, logging every shit, grieving every loss, fretting every procedure, enduring day after monotonous day of a life that often feels like it’s going nowhere fast.

Sometimes I study his perfect little body, his willowy muscles, long slender fingers, soft belly, mild facial features and I think of all the potential he might have once had ... before his brain went wrong, before the seizures took hold, before the drugs sunk in.

In the cool dark of the screen porch I pull a lantern close to my plate which cradles a baked lobster. I pierce its flesh with my fork bringing it to my lips, a curling ribbon of steam in its wake. The morsel, crowned in buttery panko crumbs, melts deliciously in my mouth. Then I crack the claws with my hands and lick the brine from my fingers one by one, thinking that the lobster’s potential having been—in some strange way—met.

After dinner I stand for a time in the darkness of the back yard with Rudy. I search the night sky for any familiar constellations—Cassiopeia, Orion, the Big Dipper—though I find none. But I catch a shooting star whose trace is fleeting, abbreviated. But it doesn’t matter. It is beautiful anyway. The glitter up there makes me think about how all that star dust lives in me and in Calvin who sleeps soundly under their canopy. And then I realize that every day my boy meets his potential simply by being, by loving and accepting of love and by living in the moment, shining brightly like that shooting star—however brief—or like that bit of warm lobster resting on my tongue.

photo by Michael Kolster

the beach

warm august wind,
skies crystal blue and clear,
endless.
crisp white chalk marks dissolving
behind glinting chrome wings.

sea spray dewing thin wisps of hair
at my forehead.
moist sand between our toes,
rolled up denim cuffs chafing salty calves,
leaning into the oncoming breeze.

burnt sienna kelp heads glistening,
granite sand and shell
encrusted tails,
ruffled, tangled and entwined,
sweeping and drifting in the surf.

tiny polished glass shards,
seafoam, emerald, umber and milky,
sapphire too,
gathered in your strong hands,
tumbling in our gauzy cotton pockets

smooth twisting gnarled branches,
ashen grey and blonde,
sensually arched
swollen saltwater planks,
massive fallen timbers stranded.

brilliant cresting waves,
radiant heat massaging our backs,
shadows cast seaward,
strolling in each others arms,
sandals dangling from our fingers.

photo by Michael Kolster

note from a stranger

To Christy Shake, Calvin & Family:

Hi Christy.
 

I learned of you through Lidia's page and I love you as a fellow human being. I'm glad you have this blog as an outlet, an outreach, a glance in, an education for some ... but, I'm sorry for the reason it exists at all.
 

My mother suffered with epilepsy. Uncontrollable, grand mals ... so, I understand. Opposite roles in this case: child as caretaker, but I understand. Epilepsy is a silent demon, scarier than anyone can really imagine, but the scars it leaves on everyone, forever, are often not so silent— and absolutely undeniable.
 

I send (some more) love to those you love and care about, and those who love & care about you, in return.
 

My heart & soul are with your beautiful boy, Calvin, both on his good days/content moments, and as he is abducted by an uninvited, unexpected and thrashing rollercoaster so fearsome and complex, that human engineers wouldn’t dare replicate it, nor can conventional medicine remedy it.
 

I'm in Michigan. I'm 46. I’m just a person—not some nut job sending you a message. As a matter of fact, I've wanted to write you for some time, but I wanted it to be intelligent—I wanted to say something that would soothe you, but then I realized there's never a perfect word, or time.
 

If you'd ever like to talk, scream, cry, share non-related chit-chat, or just hang on the line while you know someone else has an idea of what you're living through, how you're feeling  (and boy do those feelings cover the fucking spectrum) ... call.  Anytime.  (555-555-5555) or text, or shoot me a note on facebook—whatever feels right to you.
 
I don't know exactly what else to say in this message, except *I understand* and *you are not alone*, though I know that at every seizure, with every fiber of your being and ounce of love focused on your baby—and in the tattered aftermath, you might feel like you are.
 
I'm also not an MD, RN, or any kind of specialist. But if I can ever be of any kind of help to Calvin, you, your family, I'd like to offer that, as well.
 

With all sincerity, and something else that I can't exactly name,
 

~Cathryn~

friday faves - 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 six 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 seven 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, noon and night, we woefully coax to open his mouth and choke down this string of endless, chalky, bitter pills.

From last December.

 

photos by Michael Kolster

baby moon

Considering epilepsy has been known and written about for over two thousand years, it is incomprehensible to me that there has been so little progress toward better treatments and a cure.

Recently, I saw this post on Facebook about a baby girl named Moon. It weighed heavily on my heart while also inciting anger and frustration at the status quo of epilepsy research funding and awareness:

My family is in a very difficult situation right now. My daughter had more than 2 hours [seizure] last Sunday night and doctors had a hard time controlling it. Right now, my daughter hasn't woke up yet and it is already Thursday in our timezone (GMT +8.) 

Doctors are saying that my daughter is in a very critical stage and is going for a 50-50 chance. She has a swollen brain already and that's what they're trying to control and after 48 hours, they'll try to taper down the sedatives given to her and see if my daughter will respond and wake up. I keep telling myself that I should be ready that she might leave us soon but no matter how hard I try, i feel the pain and its something I can't accept yet. She is only 19 months old, suffering from Dravet Syndrome.

Mortality rate is high, I don't know if she can recover this.

Dravet syndrome is one of the catastrophic epilepsies of childhood. It is rare, appears as if out of the blue, is resistant to medication and wreaks havoc in the brains of children. Those diagnosed with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and suffer associated conditions such as behavioral and developmental delays, movement and balance issues, orthopedic conditions, delayed language and speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, sensory integration disorders, disruptions of the autonomic nervous system.

Baby Moon has been in a coma for three weeks.

baby Moon

headwaters

It came out of the blue again. Moments prior he’d been happily padding around the lawn in his felted slippers with a smile on his face. But suddenly he froze and, like a pillar of salt, went white. Soon, the ashen was tinged with blue—lavender really—at the tips of his trembling fingers and lips. When the seizure was over he fell into a deep, aqueous sleep.

A few hours before dawn I awoke to a far-off rushing sound pouring in through the open windows. At first I’d thought it was the drone of traffic, but no, too late for that. Wide awake and resting my eyes on the familiar silhouette of tangled pines outside the window, I searched for a star but found none.

Insomnia had me. Worries unraveled in my brain:

will he have another seizure will i hear it will he die might he choke at school will his reflux go away does it hurt will we find another nurse when can i travel see my mother will she remember me when will she die when will i die what will calvin and michael do if i die will my hair stop thinning will calvin stop pulling it out will he fall and hurt himself does his smashed finger still hurt will he break a tooth will my root canal go well why does she jump to conclusions i wonder if she’s happy will we get good neighbors will the poor tree live is my friend feeling better is she wracked with grief will i see her soon will i make the cutoff will they like my work will the book be published will michael’s work go smoothly will he get what he wants what does life have in store will i ever leave this house explore the world will these four walls be the last that i see?

Michael awoke and heard the rushing. “Do you hear the river?” he asked. And I did. I thought of all the rain we’d had, thought of the headwaters, of the massive cataract tumbling over the dam churning up the same waters that had, just last week, been placid enough to float on, close my eyes to. I thought of drowning in that deluge, then of hanging in the balance just under the crashing falls, safe from its pounding surf. I know how to do that, I thought, like diving into the glassy face of an oncoming wave as it crests and breaks overhead so as to avoid being pummeled and carried away and you float like a jellyfish in its bubbles and silt before coming up for air.

photo by Michael Kolster