8.31.2013

tirade

So, the kid has reflux, and I had a somewhat disheartening, half-hour telephone conversation with his gastroenterologist who is prescribing yet another drug for me to give to my nine-year-old son Calvin. The drug, Omeprazole, has a decently long list of side effects and appears to help only in the short term. The drug is known to interact with one of Calvin’s seizure meds—might amplify the anticonvulsant drug blood levels and thus the side effects of said medication—the drug, as a result, when discontinued could trigger withdrawal seizures.

I asked the doctor to call Calvin’s pediatric epileptologist to find out about the specifics of these possible drug interactions. I asked her to call a functional medicine specialist to see if an alternative treatment might work such as deglycyrrhizinated licorice, aloe, apple cider vinegar or perhaps even medical marijuana. I asked her, if we end up giving him the drug she prescribed, when he would take it since it likely can’t be given at the same time as his anticonvulsant medication and must be given on an empty stomach, which given those two directives might be difficult if not impossible to achieve. It seemed like her patience was wearing thin with my list of demands, and so I said to her quite firmly:

“If you don’t have a child like Calvin—and it doesn’t matter if you treat a hundred zillion kids just like him every day—you can never know what it’s like or what he has to go through with these drugs, which is why I have to advocate and ask so many questions because he can’t tell us anything.”

After that, she took a more conciliatory tone, tried to assuage my irritation, even reiterated what I’d said about being his advocate. But when I hung up the phone I knew that my tirade might not have sunk in, but maybe—just maybe—it will make a difference in his treatment. At the very least, as my husband always tells me, I can always hope.

photo by Michael Kolster

8.30.2013

friday faves - out of reach

Every summer when I was a kid my father hitched the trailer to the back of our olive green Suburban and set out on vacation. My mother spent days preparing food for the trip and packing essentials like towels, cooking supplies and dimes for the shower. Sometimes our destination was the Washington coast or the white hot Oregon Dunes, but one of our favorite spots to land was Sun Lakes in eastern Washington, a three-and-a-half hour drive from home.

I often brought a friend along and we passed the weary journey lying on blankets in the back of the truck playing cards and telling jokes. The drive was hot and arid, winding through desertous terrain, craggy vertical bluffs rising high above the narrow road on one side and cascading steeply down the other into a meandering green-black river. We’d reach the park in the afternoon, and as my parents set up camp my brothers and sister went to jump the cliffs and my friend and I, though we were only ten or so, were free to go off and explore a nearby lake.

Barefoot in our bathing suits, we walked on a rocky path watching hopefully and intently for snakes, our feet and ankles powdered in a fine ruddy dust. The base of the path widened and spilled out onto a small, sandy outcropping at the water’s edge, sprouting tufts of sturdy grasses and a shady poplar tree. We dipped our toes in first. The water was clear and pleasantly warm, having been bathed in the sun for weeks on end. Carefully, we slid out on the smooth, slimy moss-covered rocks, gripping with our toes and balancing ourselves with outstretched arms, as if on a tightrope. Several yards out it remained shallow. Golden-green milfoil tickled our calves as it gracefully waved just below the water’s surface, which was glassy and adorned with the sky's billowy white clouds.

Soon we were joined by a lithe little girl of about four wading on her own, her watchful parents several yards away chatting with another couple. The child slipped on the slick shallow outcropping and plopped, just barely under the water. Time stood still. She remained motionless except for her wavy blond hair undulating and mingling with the milfoil, her arms floating at her sides, her ivory skin contrasting sharply and sickeningly with the dark submerged rocks. She was almost within our reach, but we stood frozen in shock. Within seconds an adult splashed clumsily to her rescue, yanked her up by her arm and held her as she gasped and cried. My friend and I stood by utterly paralyzed and helpless.

I experience these same feelings when I watch Calvin have a seizure. He is just within my reach but there is nothing I can do to help. I can only stand by and watch from where I am, paralyzed and powerless. Only when it ends can I scoop him up, sometimes while he's still gulping for air. I just hope one day he doesn’t drown amidst the surging electric waves that rhythmically lap against his precious brain and from which I cannot rescue him.

From February 2011.

photo by Michael Kolster

8.29.2013

remarkable boy

From November 2010.

After a day of seizures, and before what would be another sleepless night, I went upstairs to say goodnight to Calvin. He was standing in his crib, like he does most nights, waiting for me after having been put to bed by Michael. I laid him back down, ran my fingers through his thick hair, told him he’s my best boy, that I love him and goodnight. I tickle his ears, so soft, pink and springy. I remember what they were like when he was born. He was a preemie—six weeks early—and the cartilage in his ears hadn’t formed yet. They laid delicate and flaccid against his head like wilted flowers.

Sometimes I marvel at what a beautiful child my boy is. A thick, silky, auburn mass—with strawberry highlights that catch the sun—has long since replaced the curly blond locks he had as a baby. His flawlessly smooth skin covers long slender limbs and a supple round belly. Are his large eyes still indigo? I think so, just not as deep as before. Such an amazingly perfect body begs the question, “what happened to his brain?” Why couldn’t he have been born with nine fingers and nine toes instead of missing much of the white matter in his brain? What went so wrong? And like so many questions, we don’t have the answer; it just is what it is.

But what Calvin lacks he makes up for in his gentle spirit, in his dimpled smile, in his adorable giggle, in the way he lovingly touches our faces and necks and in the way he kisses our nose. He’s our one and only remarkable boy and I don't know what I'd do without him.

8.28.2013

fifty years later

His speech wasn't long, but it was powerful, and it was meant for all of us, not just some of us. But fifty years later we have not done the work needed to wholly mend the wounds of segregation nor to overcome racism. Our nation is not yet a place in which all people are treated equally. Racism and bigotry abide, women continue to be subjugated and harassed, the poor remain poor and become poorer, gay men and women and other minorities regularly encounter discrimination and the disabled remain misunderstood and marginalized. We have missed the mark.

I think about what I want for my son Calvin and for his future, think about what any parent wants for their child. I don''t want him to be feared, misunderstood or labeled. I want him to have access to the same opportunities as other kids. I don't want him to be cast aside, forgotten, discriminated against, bullied, beaten down, resented or blamed. I don't want him to be a scapegoat, a target, a stereotype, an afterthought or a victim.

I, too, dream of a place where proper health care, a solid education, a living wage, fair and easy access to voting and a wide and unencumbered road to prosperity are the birthrights of all Americans, not just for some of us. And though his speech was recited fifty years ago—the year in which I was born—in some ways still, it's as if it had been written yesterday:


I am happy to join with you today in what will go down in history as the greatest demonstration for freedom in the history of our nation.

Five score years ago, a great American, in whose symbolic shadow we stand today, signed the Emancipation Proclamation. This momentous decree came as a great beacon of hope to millions of slaves, who had been seared in the flames of withering injustice. It came as a joyous daybreak to end the long night of their captivity. But one hundred years later, the colored America is still not free. One hundred years later, the life of the colored American is still sadly crippled by the manacle of segregation and the chains of discrimination.

One hundred years later, the colored American lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the colored American is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize a shameful condition.

In a sense we have come to our Nation's Capital to cash a check. When the architects of our great republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promissory note to which every American was to fall heir.

This note was a promise that all men, yes, black men as well as white men, would be guaranteed to the inalienable rights of life liberty and the pursuit of happiness.

It is obvious today that America has defaulted on this promissory note insofar as her citizens of color are concerned. Instead of honoring this sacred obligation, America has given its colored people a bad check, a check that has come back marked "insufficient funds."

But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation. So we have come to cash this check, a check that will give us upon demand the riches of freedom and security of justice.

We have also come to this hallowed spot to remind America of the fierce urgency of Now. This is not time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism.

Now is the time to make real the promise of democracy.

Now it the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice.

Now it the time to lift our nation from the quicksands of racial injustice to the solid rock of brotherhood.

Now is the time to make justice a reality to all of God's children.

It would be fatal for the nation to overlook the urgency of the moment and to underestimate the determination of its colored citizens. This sweltering summer of the colored people's legitimate discontent will not pass until there is an invigorating autumn of freedom and equality. Nineteen sixty-three is not an end but a beginning. Those who hope that the colored Americans needed to blow off steam and will now be content will have a rude awakening if the nation returns to business as usual.

There will be neither rest nor tranquility in America until the colored citizen is granted his citizenship rights. The whirlwinds of revolt will continue to shake the foundations of our nation until the bright day of justice emerges.

We can never be satisfied as long as our bodies, heavy with the fatigue of travel, cannot gain lodging in the motels of the highways and the hotels of the cities.

We cannot be satisfied as long as the colored person's basic mobility is from a smaller ghetto to a larger one.

We can never be satisfied as long as our children are stripped of their selfhood and robbed of their dignity by signs stating "for white only."

We cannot be satisfied as long as a colored person in Mississippi cannot vote and a colored person in New York believes he has nothing for which to vote.

No, we are not satisfied and we will not be satisfied until justice rolls down like waters and righteousness like a mighty stream.

I am not unmindful that some of you have come here out of your trials and tribulations. Some of you have come from areas where your quest for freedom left you battered by storms of persecutions and staggered by the winds of police brutality.

You have been the veterans of creative suffering. Continue to work with the faith that unearned suffering is redemptive.

Go back to Mississippi, go back to Alabama, go back to South Carolina go back to Georgia, go back to Louisiana, go back to the slums and ghettos of our modern cities, knowing that somehow this situation can and will be changed.

Let us not wallow in the valley of despair. I say to you, my friends, we have the difficulties of today and tomorrow.

I still have a dream. It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and live out the true meaning of its creed. We hold these truths to be self-evident that all men are created equal.

I have a dream that one day out in the red hills of Georgia the sons of former slaves and the sons of former slaveowners will be able to sit down together at the table of brotherhood.

I have a dream that one day even the state of Mississippi, a state sweltering with the heat of oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by their character.

I have a dream today.

I have a dream that one day down in Alabama, with its vicious racists, with its governor having his lips dripping with the words of interpostion and nullification; that one day right down in Alabama little black boys and black girls will be able to join hands with little white boys and white girls as sisters and brothers.

I have a dream today.

I have a dream that one day every valley shall be engulfed, every hill shall be exalted and every mountain shall be made low, the rough places will be made plains and the crooked places will be made straight and the glory of the Lord shall be revealed and all flesh shall see it together.

This is our hope. This is the faith that I will go back to the South with. With this faith we will be able to hew out of the mountain of despair a stone of hope.

With this faith we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood.

With this faith we will be able to work together, to pray together, to struggle together, to go to jail together, to climb up for freedom together, knowing that we will be free one day.

This will be the day when all of God's children will be able to sing with new meaning "My country 'tis of thee, sweet land of liberty, of thee I sing. Land where my father's died, land of the Pilgrim's pride, from every mountainside, let freedom ring!"

And if America is to be a great nation, this must become true. So let freedom ring from the hilltops of New Hampshire. Let freedom ring from the mighty mountains of New York.

Let freedom ring from the heightening Alleghenies of Pennsylvania.

Let freedom ring from the snow-capped Rockies of Colorado.

Let freedom ring from the curvaceous slopes of California.

But not only that, let freedom ring from Stone Mountain of Georgia.

Let freedom ring from every hill and molehill of Mississippi and every mountainside.

When we let freedom ring, when we let it ring from every tenement and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old spiritual, "Free at last, free at last. Thank God Almighty, we are free at last."

—Reverend Dr. Martin Luther King Jr., August 28, 1963

Reverend Dr. Martin Luther King Jr., at the March on Washington for Jobs and Freedom, August 28, 1963

8.27.2013

while at the grocer

The boy sat squished in the front of the shopping cart, his little sister perusing the aisle. I pat my friend on the back and chuckled about the fact that the grocery store is the only place where we seem to encounter each other. His son asked, looking at Calvin who was traipsing around at the end of his harness, “Does he have a disease?” I explained that, yes, Calvin does have some sort of disease, a disorder. My friend, the boy’s father, knowing of Calvin’s epilepsy and having contributed thousands of dollars for epilepsy research in Calvin’s name, asked on his son’s behalf, “What’s the name of the disease?”

“Epilepsy,” I replied, “Do you know what epilepsy is?”
“No,” the boy said.
“It’s when your brain doesn’t work quite right, and it sometimes has a kind of storm in it like thunder and lightening,” I tried to explain.
“Does it go away?” He asked.
“Sometimes it does and sometimes it doesn’t,” I answered, “We’re not sure, but we hope so.”
“Is that why he’s so pale?” and then quickly and conscientiously he added, “No offense to him!”
“I don’t think so, he just doesn’t get outside as much as some kids do,” I said, noting the handsome boy’s rosy cheeks and golden skin, and then I worried that perhaps the boy had noticed the pallor that often precedes a seizure.
"Does he have sleepovers?" he asked.
"No, he doesn't," I replied.
“You’re a very lucky boy,” his father interjected, “and you have a lot to be grateful for.”
“Those’re very good questions,” I told the boy, “very smart questions,” and I nodded approvingly to his father who had listened patiently and intently to our conversation.
“How old are you?” I asked, having forgotten the boy’s age.
“Eight,” he replied, and I realized he was just a year younger than Calvin, and I remembered seeing his mother when she was pregnant with him, back when Calvin was so fragile even before he began being racked with seizures, before having to take loads of dizzying, debilitating drugs.

We said our goodbyes and I finished my shopping with Calvin as he pushed the cart down the aisles better than I’d seen him do and with a most serious look of concentration on his face. I’ve seen some real progress with this skill in the past several months, since Calvin’s had slightly fewer seizures, since we’ve reduced—almost eliminated—one of his seizure drugs. And as we pushed the cart to the car, Calvin perked up and a little smile crept over his face, and I could see the pink in his cheeks and the sparkle in his eyes just behind the thick lenses of his glasses.

8.26.2013

extra ordinary day

It was an ordinary weekend day. Michael and I sat across from each other in a booth near the shop's windows, a glazed blueberry donut and a Boston cream stuck to thin squares of paper on a tray just out of Calvin’s reach. In the next booth a father sat with his three towheads. The two littlest ones peered unabashedly over the back of the booth at Calvin who was banging the table, flailing his arms, cooing and cawing while I tried to feed him his breakfast. I leaned across to Michael and quietly expressed my dismay that some parents don’t tell their kids not to stare. “Difference attracts attention ... and attention isn't such a bad thing,” he replied. He explained how attention, such as staring, is perhaps not altogether bad, because it can lead to understanding and acceptance. He went on to hypothesize that, if people see difference and study it closely, they can learn that, like Temple Grandin says, difference is just that—different, not less. But I wondered if trying to grasp the meaning or understand the life of a disabled person by staring might be different from ogling a person with, for example, a severe disfigurement. After all, Calvin is a beautiful child despite his antics. In any case, the gaping eyes of a child are to me forgivable, and in some ways appreciated for their innocence, their wide-eyed curiosity and thirst for understanding, while those of adults often make me cringe.

When our little native became restless, we extracted him from the high chair, gathered our things, headed out the door and down the block holding both of his hands so he couldn’t veer off into the cars parked along the street, which he desperately wanted to bang. While focusing on Calvin, so as to keep him upright and moving forward, out of the corner of my eye I glimpsed two approaching baby boomers wearing matching t-shirts and caps. As they strolled past they chirped, “Good morning!” Their enthusiastic greeting surprised me until Michael explained that he’d seen them eyeballing Calvin, with smiles on their faces, as they walked the entire way down the block toward us.

We slipped into Morning Glory, our town’s health food store, which we lovingly call MoGlo or The Hippy Love Store, where I made my usual purchase of three coconut milk yogurts (yoyo from MoGlo) for Calvin. A nice man held the door for us while we guided a stumbling Calvin across the threshold. Inside, a woman and an adolescent girl, who appeared by their modest dress and bonnets to be Shakers, stood aside waiting for us to enter. The woman had a faint smile on her face that seemed to speak volumes. It told me she was sorry for us. It whispered admiration. It expressed her fondness, her compassion. It told me that maybe she understood, that perhaps she'd had her own difficulties in life. I imagined her saying, God bless, and though I don't believe in that kind of God, my eyes swelled when they met hers.

On the way out Calvin inadvertently goosed an ample-assed woman wearing a yellow skirt so tight her butt resembled a monster lemon. When I apologized for his behavior she chuckled and I added, “I guess we could all use more of that.” She smiled and nodded in agreement.

We got in the car and soon rounded the familiar bend in the road leading home. Calvin became animated, knowing well we were almost there. Once home, I put the yogurt on top of the car. The bag tipped over and one fell out, rolled down the hood and splat onto the driveway. Rudy came out and licked it up. Calvin and I ventured hand in hand to Woody’s place three doors down, something he is improving on with each endeavor. Woody was in his driveway and gave him a hug. Calvin returned the gesture sliming him with five drool-soaked fingers. On our way back we were greeted by Rudy and Michael hanging out in the front yard, a couple of perennial gardens in full bloom out back and the promise of another extra ordinary day.

photo by Michael Kolster

8.25.2013

letter to the pediatrician (the kind i never want to write)

dear deb and katie,

i just wanted to let you know that today during lunch calvin choked on a piece of food. we think it was a half of a grape or a piece of peanut butter and jelly sandwich or both. he stopped breathing and was choking so his nurse barbara and i quickly got him out of the high chair, she put him across her knee and, with her left hand under his sternum, she used and upward thrust on his back and dislodged the food. he began breathing but his color was off (pale skin and lips) for about five minutes after the incident, which we thought was unusual.

his nurse, barbara, told me that we needed to inform you of this for purposes of evaluating him for continued in-home care, since he seems to be at risk for choking as this is not the first incident of its kind.

thank you!
christy

cc: bb, RN, BSN
cc: js, supervisory nurse
cc: michael kolster

8.24.2013

neurontinkering

Written by Julianna

From the time I was about five until my 19th birthday, I had seven or eight seizures a month. In the futile quest to stop my painful hallucinations, I have been on and off of epilepsy drugs for years—long enough to forget who I am. I have been on Phenobarbitol (lowered my IQ), Tegretol (made me balder than the 50-year-old man in the “before” pictures in Rogaine commercials), Keppra (made me depressed), Topomax (made me stupid), Lamictal (made me feel out of my body), Neurontin (made me perpetually tired) and Vimpat (made me feel like my mother must have during menopause.) I make light of some of the many side effects I experienced because, to be honest, it is hard to write about the pain anti-epileptic drugs have caused me. But I will try.

Two years ago, I had epilepsy surgery; I had about five centimeters of my right temporal lobe removed with the promise that, if all went well, I would come off of my medications. Last year, I was weaned off of Neurontin. I don’t think that I was entirely sure of the effects of that drug on my energy level when I was on it. That is one thing about medications: your mind always wants to blame itself. “God, I’m such an effing teenager. I’m always tired.”  I slogged through my freshman year of college, planning out exactly how I would get ten hours of sleep a night amid my four classes, orchestra, research, community service, and of course all the things that come with having epilepsy (including weekly therapy and medical tests). When I finally came off the Neurontin, I was astonished by the amount of energy I had. I felt like the energizer bunny, simultaneously excited and scared by the amount of energy I had. I felt like I imagine people with bipolar do at the edge of mania—creative and buzzed. my My GPA rose. I was thinking more clearly.

Currently, I am decreasing my dose of Vimpat. I am scared out of my mind because I am staring one of my worst fears in the face: that I will discover that I am a different person off of the antiepileptic drugs. The six months prior to my surgery were miserable because I was obsessing over the decision to remove part of my brain. The six months after were difficult because I was stuck in a state of post-trauma, constantly thinking of the pain and fear that characterized the previous year.

Now, off of much of the Vimpat, I feel like my previously cyclical thoughts have straightened. I ruminate less, I think more. I have more time and energy because I am not spending it crying like I used to when the drug made my emotions uneven. Even my voice sounds different. Despite being recognized for my intellect (I have received honors at Vassar College and have been a research intern at Mass General Hospital and Columbia), people used to occasionally ask me why I interjected with “like” when I spoke in public. I tried hard to stop using placeholders, but never could manage to. Now I know that the medication was making it so that my words were just slightly delayed behind my thoughts. Now I sound more confident, more direct, more articulate. And this is only after decreasing my medication to half its original dose.

To put everything in perspective, Vimpat—this medication that changed my personality—was my favorite of the more than ten drugs I tried. It was far superior to Keppra, which made me depressed, and Topomax, which temporarily convinced me that I had no intellectual future. I flunked out of my eighth grade English class and (when I couldn’t memorize Puck’s lines in A Midsummer Night’s Dream) convinced myself that I was never going to college. I cried as I studied Latin words because I couldn’t remember them, only to be informed by a past epileptologist that neurologists referred to the drug as Dope-omax. And none of those ten drugs stopped my seizures. Can you imagine any other disease in which it would be acceptable for medications to fail 30% of people with the problem? Or a disease in which life-changing side effects were not only accepted but expected? This can only be attributed to societal misunderstanding that pardons pharmaceutical company apathy and a general lack of awareness in the medical community.

Be part of a public that understands. Let’s be the generation that says, “it is impermissible to lose years of your life to a drug that is prescribed to save it.”

Julianna and a friend advocating for epilepsy awareness

8.23.2013

friday faves - spec of dust

From last October.

It’s good to get outside of myself, out from under the piles of insurance notices, dietary protocol, doctor’s notes, lab requisitions, irrelevant school notices, away from the drawer stuffed with drug-filled childproof bottles, pill cutters, syringes, bibs, rags and sterile gloves, distance myself from diapers and wipes and rectal thermometers, pain killers, suppositories and salves. And sometimes I get that chance, even in the comfort of my own home.

I watched Felix Baumgartner drop out of the sky from 128,000 feet. A strangely unsettling vertigo washed over me as I eyeballed the rotating curvature of our blue planet that appeared more brown than anything. Viscera twisted as he spun like a top, first in one direction, then slowing before circling in the other, the sun at times glinting off of his helmet. I felt as if I were doing loop de loops on a roller coaster—exciting, unnerving, exhilarating. At the edge of my seat I squinted at the little white spec on the screen: a man tumbling over himself in a sickly Time Tunnel spiral. I knew the outcome—it’d been all over the news the day before—but still the scene was gut-wrenchingly tense. Even so, I wished I’d been able to watch it live, to feel the depth of angst, fear and white-knuckle suspense, to feel something so completely foreign in its origin. In a way I wished I were he.

The video cut to Eva, Felix’s mother, tears streaming down her face as she sat at the edge of her own seat, watching, waiting. What must this mother be thinking as she witnessed her son rip through the sky like a rocket—for a period turning grisly cartwheels—punching a hole through the sound barrier with a mortal fist sheathed in Stormtrooper white. What were the chances he might perish, dissolve into thin air or be ground into the turf like sand? I found myself paralyzed, delirious, euphoric.

After seeing—feeling—such a fantastical feat, its images gravitated to my mind like a magnet. I later sat near the bedroom window, Calvin happily mouthing his toys on the floor near my feet, his colored plastic orchestra cube blinking and playing the same music I’ve hear a million times over. Up there in space ... won’t it be nice when that’s me? I mused. Oh, how I sometimes long to be a spec of dust floating in the cosmos, oblivious, infinitely small yet simultaneously expansive. Invisible. Trivial. Perfect. I’ll be ready to go there when my time comes, I thought, lured to that edge of peacefulness—the waters of Lethe and Mnemosyne—like tides drawn to the moon.

But then I step back inside myself where there’s laundry to be folded, Calvin’s dinner to be made, a floor to be swept, dishes to unload, diapers to change and an eight-year-old mouth to spoon feed. Then I delve even deeper within thinking of my aging mom, writing my blog in my head, supporting dear friends, loving my husband, adoring my child, embracing my family. Within is where I find a self that—every day—can soar twenty-five miles high and spin, sometimes uncontrollably, at 800 miles an hour even with two feet planted firmly on the ground of this planet which is truly, mostly, azure blue.

Felix Baumgartner, Red Bull Stratos

8.22.2013

pH probe poetry

PH probes, along with EEGs, kick my butt, make me sick in the gut.

Our nine-year-old child suffered mildly from an un-lubed tube hosed straight up his nose—restrained by three of us—and into his esophagus. He sputtered and cried but within minutes he tried eating his breakfast, something that Michael and I had not, which got us both in foul moods for lack of food.

The day dragged on as we tagged along behind Calvin, who, as the probe's porter, toted the battery-powered recorder. The probe was masked to his face with membrane-thin tape. The sticky stuff went under his beak and across his cheek and again at the nape of his neck. He took little regard of the tube and adhesive except for a runny nose and some sneezes.

The recorder has buttons to push: one to mark eating and one for when he's done, one for when he is upright and one for when he is prone, one for when he coughs or writhes, all possible signs of reflux, the crux of this miserable trial. I slept with him in his bed to prevent said tube from entangling or strangling, or getting ripped out of his head. He kicked my gut and clocked me in the face and even in my tight embrace his flailing fists barely missed my eyes several times in the night. In the end, sleep was fleeting just trying to defend myself from my little friend's unconscious beating.

Finally, the probe came out, no doubt. Michael peeled off the tape, careful to keep Calvin's delicate skin in shape. Then at nine, having just doffed my robe, we fished out the probe, put the junk in a FedEx bag with its tag and sent it back for the doc to take stock of the gunk.

So, although the pH probe kicked my butt, Calvin's it did not. He's been a trooper (as well as a major pooper) like I had guessed he’d be. And so, now we sit for a spell and hope to hell for results showing that Calvin doesn’t have reflux, because—you know—that would add to a pile, that rises a mile, of everything else that already sucks.

8.21.2013

ades

Ades (pronounced ādiss) came up for his annual summer visit. He's one of Michael's closest college buddies, one of many who fondly call each other by their last names. His wife and daughter stayed behind this time and he arrived, as always, bearing gifts: an expensive bottle of ten-year-old bourbon for me and a wine and champagne chiller for the house.

From the moment Paul arrived his attention was on Calvin, who gave him a big mid-lunch welcome hug from the confines of his high chair. It was clear that Paul's heart melted in between messy peanut butter and jelly fingers.

At one point Paul asked if he could take Calvin's harness reins and walk him around the house and yard. The nurse, who was helping us out that day, showed him the ropes. Watching them I realized that, besides family and a few close friends who I've enlisted to help out in Michael's absence, I couldn't recall anyone else ever—besides, perhaps, Elmer—asking to walk Calvin around.

Ades stayed for the day, ate lobster rolls and chips on a boat ride which Michael skippered down the Kennebeck river to its mouth at Ft. Popham. Upon returning, he made us rum and tonics which we sipped while feeding Calvin dinner in the screen porch, something we almost never do. We stayed up late eating Vietnamese flank steak and rice noodles with a cucumber-radish salad, courtesy of Michael. The rest of the time was spent shooting the shit, telling funny stories of college buddies like Wolf and Eric Reardon and watching the moonlight crest over the housetop. I said goodnight to the boys an hour or more before midnight, adding, "I love you guys." Ades replied, "I love you guys, too."

Later, from my bedroom's open window, I heard Michael suggest to Ades a moonlight stroll that, once inside and with the promise of much needed sleep, never transpired. Shortly after eight in the morning Ades left for home saying goodbye to, "his favorite nine-year-old in the world."

And although I know that Ades doesn't like this kind of attention, I couldn't resist sharing his love.


8.20.2013

pH probe

The kid, in my estimation of late, has been pretty damn happy. We've gone down—then immediately back up—on one of his seizure meds in a fit of indecision. Last night we reduced a different one, the one that has never shown any obvious efficacy, so why keep him on it?

It feels good to wallow in Calvin's good mood and impish grin, in his giggles and hugs, in his relative seizure-free stint of twenty days. But tomorrow morning I dread. We must take him to the hospital in Portland, leaving the house before seven, arriving for an eight o'clock appointment to get a nasal-gastric tube thread through his nose and into his gut without anesthesia and on an empty stomach. He's getting a pH probe to see, once and for all, if he has been suffering reflux.

I remember when Calvin was only a few weeks old, having to witness a similar procedure every few days while in the hospital. He was being partly nourished with my pumped breast milk through a nasal-gastric tube, since his weak little suck couldn't get enough on its own. Kathy, a nurse with neonatal intensive care unit experience, performed the task as I watched intently to see how she measured and marked the tube for proper insertion. One day, Kathy wasn't at work and the g-tube needed changing. Another, less experienced nurse showed up to do the job. I helped her restrain Calvin, who was just shy of six pounds, while she measured and marked the tube. I'd seen that she'd done it differently than Kathy, and as she thread it through Calvin's tiny nostril he began to gag and scream and tremble. "You're putting it in too far!" I cried, strands of tears and snot streaming from my face onto Calvin. "You measured it wrong!" and the nurse removed the tube as Calvin sputtered, shrieked and turned bright red.

Later, Kathy came in on her day off to replace the tube correctly. She did so for the remainder of the time that we stayed in the hospital until we took Calvin home when he was seven weeks old and had finally mastered the art of nursing. We'll never forget Kathy for her kindness and compassion.

So, I dread tomorrow morning. But perhaps Calvin will pass with flying colors like he did during the anesthesia for his MRI, for his necessary circumcision at the age of two and for his eye surgery when he was five. Perhaps he will impress us with his resilience like he did for the countless, scary, unpleasant, protracted EEG lead applications and removals, his painful and frequent blood draws and IVs with their needles and splints and the restraint needed for all. Perhaps Calvin will quickly forget about the tube taped to his cheek that goes up his nose and down the back of his throat that he'll have to endure for 24 hours, and maybe he'll manage, like my kid sometimes does, to be a damn happy kid nevertheless.

Calvin with his nasal-gastric tube at 20 days old

8.19.2013

five courses

Corn blinis, pan-fried golden-brown in butter, topped with garlic chives, sweet corn cut from the cob and créme fraîche. Their savory sweetness melts away the day's sour mood. My hair tied back, I feel the breeze on my neck and fingering through my sweaty t-shirt. Here my spirit, worn thin and ragged, finally has room to breathe.

Ice cubes clink in a glass half full of bourbon.

The smell of sauteéd onions lingers, makes me feel warm and secure, even loved. I hear Calvin playing lightly in his bed before drifting off to his drug-induced sleep. The chef, my husband Michael, steps inside offering the second course. The screen door slaps shut behind him but I don’t jump. Eggplant soup: the nightshade vegetable thought to induce seizures in some. It’s light and lemony, the color of fennel or Parmesan. Flat beads of olive oil laced with spice drift amongst a fresh parsley garnish. I am weightless and, at the same time, grounded in a green plastic chair.

A blue jay caws then swoops in for a drink of water.

Next, my watering mouth meets a Tomato Niçoise adorned with capers, olives and fresh basil leaves. Its succulence makes me drunk. Anchovies drape across seedy wedges as red and weeping as raw meat. I catch the faint scent of phlox. As we sit quietly in the garden’s embrace the landscape whirls in the wind like prairie grasses or waves. It is not static. Slowly, I feel my body—my mind—unfurl.

Red wine floods a large goblet.

I close my eyes with each bite, try to make it last, try to stay in the moment, try not to worry about or dread my son. Dusk is falling and I hear Calvin whimper, but only in his sleep. In comes a platter of sweet peppers cradled in my husbands hands. They’re halved like hearts, stuffed with feta, topped with crispy, olive oil-infused bread crumbs, then baked. I tear at their meat like a dog. Juicy. Ripe. Piquant. Somehow, I’m in another world with flavors new to me though also familiar. Am I in Greece? Turkey? Italy? No. But it doesn’t matter. I’m home. I am thankful.

Crickets chirp like crazy in the grass.

Lastly, coconut milk, cardamom and blackberries spooned over vanilla ice cream. By this time the silence is sublime and I can only see the outline of things, imagine creatures in the shadows where I hear twigs snap. I touch Michael's arm. My belly is full, my body tired, my mind sleepy. I’ll dissolve into the night like a lozenge and, later, I’ll wake myself from a dream-seizure calling out Michael’s name. I'll sneak in to see Calvin soundly asleep and beautiful.

An egg of a moon glows amidst a black sky, and though I can't see many, I know there are billions and billions of stars out there.

8.18.2013

these nine years (in no particular order)

loss
developmental delay
low muscle tone
neurologists
ventriculomegaly study
reglan
drooling
seizures
love
MRIs
trileptal
physical therapists
anger
nystagmus
appreciation
bruises
erythromycin
ear infections
pneumonia
breakdowns
sleep deprivation
choking
ear infections
visually evoked potentials
fatigue
bronchitis
adoration
hospitals
speech and language pathologists
pain
endocrinologist
despair
pharmacies
keppra 
outbursts
neuro-ophthalmologist
insomnia
pediatric intensive care unit
esotropia
lactulose
atavan
spit ups
kidney sonograms
teacher for the visually impaired
multiple 24 and 72 hour EEGs
nuclear medicine
hugs
depakote
slow gastric emptying
diastat
circumcision
therapy
febrile seizures
occupational therapists
gluten free casein free diet
thankfulness
gastroenterologists
lamictal
lung X-rays
cyanosis
urologists
general anesthesia
gratitude
arguments
zonegran
diapers
status epilepticus
antibiotics
yeast eradication
monotony
emergency rooms
screaming
nausea
clonazepan
blood draws
status epilepticus
sweetness
sleep study
disappointment
pharmacies
insurance nightmares
inertia
suppositories
pervasive developmental delay not otherwise specified
autism spectrum
anesthesia
affection
hiatal hernia
withdrawal seizures
ataxia
dizziness
missed opportunities
envy
suffering
nephrologist
colonoscopy prep for impaction
constant worry
neurontin
pediatrician
smiles
911
ataxia
pulmonologist
expectation
medically refractory epilepsy
intestinal X-rays
carnitor
happiness
forgiving
paperwork
research
tears
nightmares
ambulances
vitamin B6
grief
pills
phlebotomists
forty-five-minute seizure
saying goodbye
eye patch
emergency intubation
hope
20/1000 legally blind
epileptologists
missed milestones
capsules
tears
miralax
waiting rooms
frustration
headaches
potassium citrate
extreme parenting
worry
joy
melatonin
low glycemic index treatment
powders
frazzled nerves
eye surgery
zombie kid 
IVs
cod liver oil
impatience
ketogenic diet
humor
orthotics
irritability
hair loss (mine)
liver toxicity (calvin's)
walking harness
weight gain
hyperactivity
skill loss
liquids
weight loss
clobazam
broken tooth
keppra
hyperactivity
pride
apple of my eye

photo by Michael Kolster

8.17.2013

crap and spark

I'm going to write a letter to Joni Mitchell and thank her for her uncanny ability to inspire our nine-year-old son Calvin to poop. She almost never fails us when we sit him down in his high chair to eat supper. In an effort to settle his hyper little body, we play Joni's album Court and Spark. Within seconds, he quiets, gets a serious look of concentration on his face, then fills his diaper. We've started calling the title song, which we've heard no less than fifteen zillion times, Crap and Spark.

Thank you, Joni. We owe you a debt of gratitude. I'd never in a million years imagine that, nearly forty years later, I'd still be benefiting from your music.

8.16.2013

friday faves - spread the word

Isaac Asimov authored one of my favorite quotes, "Never let your sense of morals get in the way of doing what's right."
 
This amazing video demonstrates why we must urgently push for medical marijuana to be legal in every single state, bar none. There is no excuse to do otherwise, though big Pharma will likely use its arsenal to hire lobbyists and put money into the pockets of certain small-minded, power-hungry, fear-mongering politicians.

Today, we will find out if governor Chris Christie of New Jersey will decide to sign a bill legalizing the use of medical marijuana for children. The bill has been sitting on his desk for over two months while parents, like Brian Wilson, whose children suffer catastrophic epilepsies such as Dravet syndrome, sit in fear wondering whether their child will live to see the next day.

It's a crime that our children with epilepsy have to suffer thousands of seizures and succumb to debilitating cognitive deficits because of relentless seizures and the heinous side effects of toxic pharmaceuticals, which by the way don't work nearly half of the time, and all in the name of ignorance, priggishness, greed and fear.

Do what you can, people. Spread the word. Educate. Do what's right. And if anyone in Maine wants to breed marijuana plants tailored to the needs of children with medically refractory epilepsy—high in CBD and low in THC—we need you!
 

8.15.2013

a reply to a comment

Late in the day yesterday, while trying to do a bit of gardening—about twenty minute's worth—I became overwhelmed with frustration over an irritable, whiny, impossible, leaning-out-of-his-stroller, staring-at-the-sun, probably-about-to-have-a-seizure Calvin. My mind and heart sunk into that viscous black of despair seething with anger and annoyance. The familiar feeling of being trapped, perhaps for the rest of my life with no way out—no way to do the things I used to love doing like traveling and camping, no way to do the things I dreamed of doing with my child like enjoying the park or the beach or the movies or a favorite restaurant—consumed me. I yelled and spat and stomped and slammed and cried and thought terrible thoughts.

This morning, after a somewhat decent night's sleep, I felt better, and when I sat down to my computer I read this from my friend Elizabeth's blog, (which you can read more of here.) I wanted to share it with all of my readers who may, as I did, find some solace in the words of the commenter and in the wisdom of the reply:

A Reply to a Comment by Elizabeth Aquino

Here's the comment:
I was just reading your post from yesterday and from today. Got me wondering. Are we, most of us, destined to carry the weight of guilt and anger our entire lives? I feel often that I will. I read so many blogs and that is the recurrent theme. I speak to friends who have kids with severe disabilities and the theme pops up.
Got a question for you and I want you to give it some thought and maybe you can answer it, maybe you can't, because lately I have been wanting to drive my car into the local reservoir, and I'd like a reason not to. Not sure that the answer will be a reason, in fact it won't be. But it gives me something to look forward to.
Why can some people seemingly have circumstances similar to our own, and I'm talking some really heavy shit happening in their life, or to their kid or kids, and they don't experience that same reaction? They actually seem to go the other way with it...a way of somehow nuking the negativity of all the bullshit that surrounds them and always finding something positive about every single thing that they encounter?
What is their secret? I need to know. I've always been told how negative I am. I stopped blogging last December, partly because I was told by people close to me that all I ever do is talk about negative stuff. But to me, this life can be SO FREAKIN' NEGATIVE sometimes that I do not know how to be positive anymore. And I am only in year five. My fear is that I am going to forget, particularly if I cannot get my son's violently aggressive behaviors under control and things just keep getting worse and worse.
Sorry I hijacked your blog for this, but it has been eating at me, and I promised myself not to write in my own blog for at least a year. And you have the ability, like a few others, to sometimes be both positive AND negative. Or to at least write beautifully about feeling negatively, if that makes any sense. Your insight would be tasty...
Here's my reply:
First, a big hmmmmmmmmmmmmmm. My first impulse is to wish that I were Bob Dylan or at least had an encyclopedic knowledge of Dylan, because I'm sure there's an answer to your question in one of his songs. Next, I thank you for taking the time to comment, to pour your heart out and for your kind words. I've missed your visits here and, more importantly, I've missed your voice on your own blog. I think that I have, actually, a simple answer to your question and that is that I don't fear the "negative" emotions any more or less than I welcome the "positive" ones. As I get older, I find myself more and more drawn to what are, I guess, Buddhist principles, and my daily practice of mindfulness helps me to shift my thinking self into some semblance of equanimity. That sounds like a whole bunch of mumbo-jumbo when I read it, but it's the truth. I, too, have been accused of being negative -- relentlessly so -- and the accusations have come from close relatives. When I feel beaten or defensive, I might think "Fuck-em," but I more often stop, pause and reflect on the negativity that I might have let fly and then observe it. I don't judge it. You ask why some people are "always finding something positive about every single thing that they encounter?"  I actually don't think there's any secret to that at all, and, frankly, I don't believe them -- there's no ring of truth -- for me -- from those who deny or suppress valid emotions, and I believe the "negative" emotions are as valid and real as the "positive" ones. You ARE only in year five, as you said, but I can assure you that in year five (nearly twenty years ago!), I wouldn't have written the same reply to your comment. I might, even, have contemplated joining you in that car into the reservoir. I think it was actually during year five that I took an MBSR (mindfulness based stress reduction) class and began really sitting with my grief and anger and loss and just observing it rather than fighting it. I don't want this reply to sound like some sort of infomercial, though, and I remember your posts over the years that I read them as being far from relentlessly negative but more often brutally honest, filled with humor and love for your family. It sounds to me that "promising yourself not to write in my blog for at least a year" is self-punishing -- and I don't fully understand it. When I look back on the early years of parenting Sophie, I realize that if I had known where the future would lead, I wouldn't have been able to handle it. That being said, I AM handling it, and there is much that is beautiful in my life, so I have faith that at some future date, things will be all right, I will have learned to "handle" it, things will evolve, there will still be guilt and anger, loss, rage but there will also be acceptance and love and things gained and laughter. I will always work to hold all -- and that work for me is lightened through my connections to others, above all, but also through reading, through practice, through art and through writing.
To read more and to see a video of Bob Dylan, go directly to Elizabeth's blog post, A Reply to a Comment.

photo by Michael Kolster

8.14.2013

resonance

How happy I am to be able to walk among the shrubs, the trees, the woods, the grass and the rocks! For the woods, the trees and the rocks give man the resonance he needs.

—Ludwig van Beethoven in his letter to Therese Malfatti, 1808

photo by Michael Kolster

8.13.2013

progress by shades

Though my son Calvin's seizures and the three powerful antiepileptic drugs he is taking seriously impede his development, he is making progress.

Today, Calvin traipsed down the sidewalk in front of our house to Woody's place three doors down, which is the farthest he's ever gone, and even then he's only done that a dozen or so times in his life. He's a homebody and a stubborn little bugger, but it seems that since we've reduced one of his seizure drugs slightly he's a bit more willing to step out of his comfort zone and amble down the block. This time I convinced him to walk past Woody's house then on to Mike's place and up the front steps to buzz the ringer. Mike, who is in his early nineties and was widowed a couple of weeks ago, wasn't home to receive us. If he were it probably would have been the first time he'd have seen Calvin walking.

On our way back home we were greeted partway by a gimpy Rudy the dog who had, for the most part, stayed in the yard awaiting our return. And to think Calvin did all of this walking a few hours after having given five full vials of blood for testing, during which, by the way, he was a total champ.

And when I tell Calvin, upon reaching the goals I set out for him, that mama is so proud of him, a big smile spreads across his face. Perhaps he, too, might know he's making progress, albeit by shades.

8.12.2013

at the fair

Tattooed women in cut-offs and tank tops pushed fat babies in strollers. Scruffy men in t-shirts and sneakers trailed behind toting paper baskets full of fried clams and blooming onions. A young green-eyed Hispanic man working a midway ride looked on somberly then finally cracked a smile when he saw mine. He reminded me some of a boy I had a crush on in my youth.

Watching Michael weave through the crowd bridling Calvin with his harness, passing carneys with cigarettes and leathery skin between rows of shacks boasting fried dough, candied apples and hand-cut fries, made me think of carnivals of long past. I imagined the freak shows in which deformed people were paraded like animals in front of gawking crowds. I wondered if my legally-blind, disabled, non-verbal, spastic kid might’ve once drawn a crowd of voyeurs at this type of event. As it was, I felt the weight of eyes fall upon us, some curious, some compassionate, as Calvin staggered and stalled within Michael’s careful grip.

In the shade of the horse arena, while feeding Calvin a snack, we watched an eight-year-old boy steer a pony-drawn buggy to a third-place finish. The boy sat so upright and steady in his crisp blue shirt and vest under a cowboy hat almost too big for his head. I couldn’t help myself from weeping.

Every summer when we visit these agricultural fairs I wonder if, by the following summer, Calvin might be walking on his own, might be seizure free, might be off at least some of his drugs. And every summer is met with disappointment of the reality that Calvin hasn’t much changed. Other nine-year-olds there were likely milking cows or chasing pigs or brushing horses or riding bumper cars or eating cotton candy. Ours, who seemed oblivious to the animals and the rides and the games, was in a stroller filling his diaper.

The sun beat down on us as a cloud of hay dust flew into our eyes. It was as if the universe had tossed it at us in the same way it had when Calvin was born missing a significant portion of the white matter in his brain. I squinted and wiped away a sandy tear, and as we headed back to the car I looked up at the clouds in the sky, which thankfully took no notice of me, and hoped that next summer things might be better.

8.11.2013

how things turn out

Things turn out best for the people who make the best out of the way things turn out.

—John Wooden

photo by Michael Kolster

8.10.2013

familiar oddities

He pranced and cooed and shrieked and flapped, all in a pair of colorful swimsuit trunks. Even in August, the river, the mouth of which mingles with the ocean, felt frigid. The boy dipped his toes into its clear green-blue as it lapped up onto the beach. The scene was delightfully odd to witness. “He must be about fifteen, right?” I’d said softly to Michael as we strolled down the shore, the boy receding behind us chirping and cackling, the beach stretching out in front and the sky painted in gossamer clouds.

The youth, who was dark blond, lanky and nearly as tall as I, was monkeying around like a toddler, excitedly racing back and forth between the water’s edge and his mother who was spreading out a towel on dry sand. I wanted to look back but I didn’t dare gawk. Seeing the teen made me imagine how Calvin might be at that age, made me wonder if in four or five years he’d be walking by himself, if he could play at the beach without eating sand and driftwood, without flopping onto the ground in a fit, without staring incessantly at the sun. I wished as much.

Michael and I ... we’ve developed radar of sorts, the kind that can spot developmentally disabled kids—kids I like to call extraordinary—from a mile away. There’s a warm, knowing feeling when we do, a comprehension that we’re not alone on our journey raising Calvin. “Did you see that kid?” I find myself asking when we exit the grocer or cross the street or enter a diner, and we smile at each other, at our glimpse of familiar oddities, but also in solidarity of the heartache, the burden, the ridiculous joy, the suffering, the marginalization of it all.

And the parents of these boys and girls, ones with Autism or Angelman’s syndrome or Down syndrome or Rett’s syndrome, these kids with epilepsy who, because of their seizures, have lost their opportunity to live a normal drug-free life, are doing it. They're doing it happily and are seemingly well adjusted. But they’re not doing it alone, and hopefully they're cognizant of that and have others who they can lean on when the going gets rough, like we do.

We continued down the beach and back watching child-free couples walking hand in hand and teens playing beach Ping-Pong and girls with tattooed shoulders sunning themselves with their dogs and dogs peeing on sandcastles and sandcastles melting into the surf. And I thought of Calvin at home with his nurse splashing in his tiny inflatable swimming pool, having his diapers changed and his pills spoon-fed and his body bathed and his tumbles intercepted and his little neck hugged and somehow, without him there, I felt all alone.

8.09.2013

friday faves - walking on air

From last September.

The Brooklin air was hazy, moist, tingling. The fog set the sky aglow beneath dark clouds, the water’s surface glinting like foil at the horizon where the morning sun slipped through a wedge of open sky. Very simply, it was beautiful and plenty warm, so the four of us set out on a walk.

Calvin held both of our hands as Rudy sniffed and explored the fields flanking the sandy path. I was thrilled to the point of tears that Calvin was walking so well. “I feel so free,” I said to Michael with a quiver in my voice, “like the first time I drove a car without someone in the passenger seat.” It was like walking on air. He understood the feeling of liberation that comes when a child begins to walk hand in hand with relative skill and endurance—enough to leave the stroller behind instead of lugging it along everywhere we go just in case.

Every twenty-five or fifty yards our boy balked—stopped to be picked up. And so each time Michael hoisted him up to his hip where Calvin yanked his ears, pulled off his glasses and slimed his face with copious open-mouthed kisses. After a few minutes of rest we’d stand him up like a little toy soldier, grab his hands tightly in our own and march on. The tide was out and we managed to make it all the way to our favorite pair of trees clinging to hunks of soil atop a granite slab. The last time we were here Calvin had to be carried the entire way. That night he’d had a seizure. Later we learned pneumonia was the culprit. Yesterday was the first time since then that we’d seen those trees, which hadn’t grown as much as I’d expected. Their survival seemed to hang by a thread, their disintegration dependent upon the frequency and severity of storms eroding their foundations. Just like Calvin, I thought, his survival—his ability to thrive—in great part due to the dampening down of seizures that thunder through his little brain.

But the trees were still there and seemed to be flourishing, weathering the storms and tides well. It seemed fitting that Calvin, after six years, was able to walk amongst them as their brother. And as we headed home across a crushed-shell path I felt cool droplets on my face. But it never rained. Instead, the sun broke through the clouds and warmed our backs as we walked hand in hand with Calvin up the rutted path that stretched out before us.

8.08.2013

i heard about

He said the little boy went to school one day. That day the boy had a seizure. The next day the boy realized that he had lost all of his friends.

I’ve heard it before, heard about the college student who suffered a five minute seizure face down on the sidewalk as people hurried past stepping over her convulsing body. No one came to her aid.

I heard about the man who had a seizure in the boardroom, his colleagues later laughing behind his back.

I heard about the teenager suffering from epilepsy and depression—a common combination—who refused to take her meds, suffered a seizure while driving, rolled the car with all of its passengers, survived to tell about it yet still doesn’t take her meds.

I heard about the boy whose seizures returned while at boarding school, whose teachers hadn’t informed his mother, whose mother let him go swimming during a visit home, who drown while having a seizure.

I heard about the woman who, when her daughter was diagnosed with epilepsy, lost all but a handful of people she thought were her friends.

I heard about the woman who broke her toes against a wall while seizing.

About the girl who broke her nose, broke her teeth, broke her spirit.

About the woman who fell down a flight of stairs during a seizure.

About the mother who lost her only son and the father who lost his daughter and the men who lost their young wives to Sudden Unexpected Death in Epilepsy.

I heard about the man who lives each day in the fog of his twenty-three seizure medications.

About the woman who told no one, for fifty years, that she had epilepsy for fear that she would face discrimination.

About the boy who drown while having a seizure in the bath.

About the child who went brain-dead during a prolonged seizure.

About the girl who went blind because of a serious reaction to an antiepileptic medication.

About the girl with epilepsy who, in fits of drug-induced rage, scratched her mother bloody.

About the parent who refused to tell anyone, even the teachers, that her child had epilepsy and what safety precautions to take if one occurred at school.

About the doctors who tell their patients that they have a seizure disorder but fail to tell them that it's the same thing as epilepsy and that the disorder can be fatal.

About the child with epilepsy who had the entire left side of his brain surgically removed.

About the boy who endured several dangerous induced comas in an effort to thwart near constant seizing.

About the children born healthy and vital then succumb to epilepsy, suffer hundreds and thousands of seizures, endure the wrath of scores of antiepileptic drugs and their side effects and fall into a state of serious mental deficit.

About the boy—my boy—who began having seizures at eighteen months, who has tried and failed nine anticonvulsant drugs and two dietary therapies, who cannot walk by himself, cannot utter a word, endures heinous drug side effects and still suffers the seizures.

I've heard it all before. So, now, have you. Go out and tell it to the world so we can find a cure and an end to all of this suffering.

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

8.07.2013

puff of smoke

The first frame of the cartoon depicts Jessie Jackson and Al Sharpton wishing upon a star for an end to racial strife and bigotry. In the next frame the two men disappear in a puff of smoke.

I took offense to the caricature that arrived in my email inbox, and it got me thinking ... hard. My take on it is that the illustrator and those sharing his views think that outspoken critics of racism, particularly African American ones, are culpable for inciting racism in this country, and if we just got rid of them (and perhaps those they represent?) we could eradicate racism once and for all. The mere thought of this kind of logic turned my stomach.

It made me think of Calvin, my darling, disabled, legally blind, non-verbal, epileptic, medicated nine-year-old boy, and of the documentary I just watched called The Architecture of Doom. The film, which illustrates Nazi attempts to purify their nation, explains the miserable rational for the systematic extermination of the infirm, the disabled and the Jews, all of whom were thought, erroneously, to be contributing to Germany’s downfall.

Then my mind spun to a world in which diehards grumbling about women’s liberation might’ve thought that the annoyance would simply disappear if the figureheads of feminism, women such as Susan B. Anthony, Gloria Steinem, even Lilly Ledbetter, were simply squashed. I thought of the nations in which girls and women are not allowed to go to school, to work or to show themselves in public, and of countries like India who so undervalue the gender that abortion of female babies has lead to a shortage of marriageable women, and countries in which women are blamed, shamed and punished for being raped. And then I thought, of course, of the brave Pakistani teen, Malala Yousafzai, who was shot in the head by the Taliban because she campaigned for girls' education. Thankfully, she did not go up in a puff of smoke and her voice advocating for change can still be heard.

I thought of a world in which people who grouse about disability rights might prefer that disabled people, like Calvin, simply disappeared. I thought of how this country undervalues the lives of disabled people, discriminates against those with physical or mental deficits, is blind to their unique contribution to a rich, diverse and compassionate society. I remembered how, not long ago in this country, in some states people with epilepsy were forbidden to marry and in others were forced to be sterilized. To this day many people with epilepsy continue to hide their affliction and keep secret that their children suffer the disorder for fear of being outcast.

I wonder why some people in society, such as the comic’s author, hunger to suppress the voices of common decency who champion the ethical and equal treatment of all citizens, how a society can undervalue and subjugate women, minorities, immigrants and the disabled and go so far as to blame them for the ills of a nation when the opposite is likely to be true? Why? Because of fear, ignorance and the indifference of small minds.

And so to defy these bitter wishes I will love Calvin for who he is and for his loving contribution to our family, our community and to the human race. I will continue to exalt the powerful and virtuous voices of truth and equality from the mouths of the oppressed—black people, women, gay people, immigrants and the disabled. I will hope for a nation that separates itself from much of the rest of the world, embraces and respects all walks of life and I’ll wish that any misguided ideology that slights its own decent citizens is seen for its prejudice and simply goes up in a puff of smoke.

Internet image

8.05.2013

waiting for me

It’s an oppressive black sky that looms overhead;

The heart-stopping stir of falling in dreams.

It’s vertigo’s creep just at the cliff’s edge;

And the white-knuckle angst of horror film scenes.

It’s dread of the dawn inside sleepless nights;

The pressure I feel at twenty feet deep.

It’s the smothering clasp of sinking in sand;

The insidious fear of a dark narrow street.

It’s the cold sweat of dusk in sinister woods;

The grim buzz of cicadas hidden in trees.

It’s the gnawing unease of the telephone ring;

And the panic of drifting far out to sea.

It’s the ulcerous pit that's deep in my gut;

The merciless weight of a tunnel’s dank heat.

It’s the nerves of an addict thirsting for smack;

It’s his seizure—I know—that is waiting for me ...

Waiting for me ... waiting for me.

8.03.2013

report

Not much else to report today but the appearance of some anal fissures and constant constipation and incessant coughing and seems like he's hurting and it could be a headache because he's withdrawing from one seizure medicine just two days after a seizure and he's growing like a weed and he's irritable and pulling out my hair and giving tons of hugs and keeping me up at night and driving me nuts and walking so well behind the shopping cart and down the street to Woody's house and coughing some more and we don't know why though it could be pain or discomfort or gas or constipation or simply behavioral or all of the above.

Yep, not much else to report today but the usual.

photo by Michael Kolster