4.29.2015

whites and riots and open eyes

My heart races, my breathing faint and quick, when I read the naive, ignorant, vile, insensitive things I see on social media, posted by white people about black citizens' response to epidemic police violence against their unarmed brothers and sisters—the only reason I can think of which makes me thankful that my son Calvin can't, and will never be able to, read.

A friend and former Bowdoin College professor tweeted in response to white judgement of the riots in Baltimore, “We were property once too.” She got these tweets in return:

John Reiter @boopmeatsweats, “and you shouldve stayed that way you ugly ape whore”

and

David Kirk @SmokeyJihad777,  “Bitch you weren’t shit smh still crying about shit that happened 150 fucking years ago that doesn’t affect you at all”

I sit and wonder why such hate and ugliness festers in the hearts of people who, statistics show, more than likely don’t even know any African Americans, though perhaps that is the problem. I wonder if they think of themselves as followers of God. Most whites in this country do. But maybe their hate first took root because of certain conservative media's racial stereotyping, fear mongering and twisting of the truth. Or is it latent white guilt which blinds these bigots to the facts, that though slavery is over, racial subjugation still exists, permeating society beginning with the unjust punishment of black and brown-skinned kindergartners, haunting them through their childhood years into adulthood, if indeed they make it that far?

It disturbs me seeing so many white people simplifying or deriding this complex, tragic and centuries' old problem of racism, others trying to wish it away by citing their colorblindness, denying that racism exists at all or putting all the blame back on black people. It seems clear to me they don’t understand the source of anger that the black community harbors toward this most unjust society of ours. The problem, I believe, is that these people choose not to see reality. They view life only from the white side, which is opaque at best and privileged galore, and doesn’t take responsibility for the ills that continue to be imposed on our black citizens—high unemployment rates, high rates of poverty, grossly disproportionate rates of arrest and conviction, stiff fines and sentences leading to mass incarceration, broken families, torn neighborhoods and the resulting sanctioned discrimination in subsequent searches for housing, employment, health care and the right to vote—all of which we have the capacity to amend, and should.

I grew up in a Seattle suburb knowing only a few black children my age. Racism didn’t seem like a thing to me, until I began befriending non-white men, then dated an African American for five years. From behind a different lens I learned—second hand because I am white—of society's ingrained suspicion of black people, of cops rampantly frisking black youths for doing nothing more than loitering, something my white friends could do with utter impunity.

Then I began to sense the insidious bigotry. I remember when my mom once saw a tall, well-dressed black man emerging from a luxury car.

"He must play professional basketball," she said.
"Why not a doctor or a lawyer, Mom?" I asked. Her only response was to seethe at me.

Over the years I've witnessed blatant as well as subtle racism, like when white people marvel at how well a black person might express themselves on television, when really they are no more articulate than most folks I know, black or white. Or when someone says that President Obama isn't black because he had a white mother and has light skin, thereby denying the rife condemnation he faces because of his race. Or when the airline agent asks only one person in line to check luggage, and that person is black. Or when a pretty white teenage girl says, when reclaiming her cigar from her father's mouth, "Why'd you have to nigger-lip it?" Or when whites use the word thug to describe black children in hoodies wielding toy guns or handfuls of Skittles on their way to being shot to death. Or when white folks wonder what we owe them. Or when black folks are pulled over or chased by cops for no reason but that they are black. Or when an interracial family is heckled by a passerby or when a black woman is charged more in rent because of the color of her skin or turned down for a job interview because of her name, or when white folks think that the wrongful deaths of Michael Brown and Renisha McBride and Travon Martin and Eric Garner and Tamir Rice and Akai Gurley and Oscar Grant and Freddy Gray are isolated incidents.

The root of racism is, and always will be, bitter, white and invasive. You don't have to dig down very deep dirtying your fingers to see for yourself. Our white ancestors slaughtered Native Americans by the droves, calling them savages, taking and raping their resources and forcing survivors onto reservations. White people are still taking their children. Our white ancestors led the slave trade and white plantation owners profited from the sweat and tears of men, women and children who were seized from their homeland, forced to give up their language, culture and religion, their freedom, their children, their lives. White men forced Japanese American families into internment camps. White politicians designed Jim Crow laws pitching poor whites against poor blacks at a time when the two groups had begun to galvanize a force against the rich. White men lynched black men for no other reason but the color of their skin. White shop owners barred black patrons. Black leaders were assassinated by white men. White heads of corporations shipped inner-city jobs overseas exacerbating poverty. White politicians devised the war on drugs, targeting black, inner-city boys and men while white cops enforced it, with skewed brutality and rigor. White men exploit Hispanic men and women to pick our fruit and sate our wasteful appetites. White witnesses, jurors and judges have condemned innocent black men and boys, putting many behind bars for years and sending others to their deaths. White politicians redistrict states to win the vote and champion voter ID laws which disenfranchise blacks, among others. I could go on. My eyes are open.

Martin Luther King Jr. said, “A riot is the language of the unheard.” If we want the rioting to stop, we, as whites, need to listen to our Black American brothers and sisters and validate their struggle against the heavy boot of white society. Then we need to right it, whatever it takes. We need to see the true injustices of our time. To do so we must humble ourselves, but most of all, and first, we need to open our eyes.

4.27.2015

tremors

Just as the aftershocks in Nepal were seizing the region, my son's mind suffered an earthquake of its own. Laying next to him as he slept in the seizure's wake, his mind awash in rescue THC, I wondered if all sixty-five million people with epilepsy had simultaneous seizures might the world's crust crack open and bleed.

We were lucky this time. Calvin only had one seizure, albeit a tonic-clonic (grand mal), rather than the twenty-four hours with scores of brief partial seizures of recent, or February's status epilepticus, which landed us in the emergency room wondering if they’d ever stop. It was day eleven since the partials occurred, and nearly two weeks since his last tonic-clonic, the only daytime one he's had in 235 days thanks to cannabis oil.

On nights like these it's often difficult for me to get back to sleep as I feel my boy's body twitch with aftershocks, which thankfully the cannabis dampens. This time, the images of Nepalese men covered in grayish dust, statues half submerged in the quake's rubble, haunt me. I wonder how the live ones breathe, if they can see or feel the bricks pressing in on them or if they’ve become numb to it all. I wonder the same about my boy when seizures plague his brain stunning him into human stone. I have little doubt he senses them coming, his neurons going berserk then seeming to align in harmony, so much so that he walks straight and strong and long. But all the while the neuronal tension builds and the stress becomes too much until everything snaps, his brain awakening into tremors, which leave him in a shambles.

I imagine Calvin's brain brittle from the whip of antiepileptic drugs, their toxic chemicals leveling his development, smothering his strength, toppling the progress he works so hard to make. Then along comes cannabis infused in oil, its medicine lubing Calvin's neurons, its protective balm bathing the precious cells of his brain helping it to withstand the shock of seizures, to mitigate the quakes, mend the breaks and heal. I wish there were such a salve for the people of Nepal.

Calvin in the grip of a seizure

4.23.2015

harvest

She's eleven. The same age as Calvin. She's also one of the cutest little girls I know with one of the sweetest brothers, Sol, I've ever met, with the most caring and compassionate parents in the world. Her name is Harvest.

Harvest and her family lived just down the street for a couple of years and joined us at a table for sixteen one Thanksgiving. We'd see them come and go and I'd sometimes run into her mom, Brandi, at Calvin's school where she worked as a behaviorist. Nestor, her dad, was Michael's colleague in the college art department. He liked to make things with his hands, a creator of much including provocative ideas and bread, the latter of which he'd bring to us in small loaves still warm from the oven.

Sadly, the family moved away several years ago to Pennsylvania. I keep track of them on Facebook, watch the kids grow up in photos, see Nestor's creations and his students' work. The other day I got this message from Brandi:

Hi Christy,

A little while ago you posted a video of Calvin having a seizure. As I was reading your blog and watching the video, Harvest came from behind and watched too.  She was so upset and moved that she wanted to do something about it.  After waiting for good weather and lots of planning, Harvest and her friend Stella set up a lemonade stand and raised $125 for Calvin.  We just made the donation from one of your links on your blog.  Harvest thinks the world of Calvin and only wants him to get better! 

As always, we are thinking of you!

Have a lovely day,
Brandi


Reading Brandi's message and seeing the photos of the girls made me weep. I think back to when I was eleven, when I first began feeling a sense of independence. Then, I had no concept of others' needs. She's so evolved, I think, and I know why Harvest and her brother have always seemed like old souls to me: because they are and because their lovely parents show them how.

I remember the first time I met Nestor. I was upstairs in our bedroom with Calvin getting him dressed after a bath. Michael walked in with this tall man in an overcoat, long, dark curls with a twinge of gray circling his face, thick black frames accentuating the kind of hooded eyes I like so much. He smiled warmly and said, "Hi Calvin," coming in close enough for me to see the handsome gap between his teeth. He was so gentle and loving, as if he'd known Calvin—known us—for a million years, acting as though he hadn't even registered Calvin's disability, not dismissively, but in a good way. I'll never forget that moment, the best kind of first meeting there could be. I hugged him immediately.

Thinking back to Harvest and her lemonade stand, I honor all the people who donated their hard earned cash for this year's CURE epilepsy benefit, folks who helped us raise over $25,000 toward a grand total of over $120K. I recall folks who gave to the cause who barely scrape by, of family and friends who have given every single year. I think of strangers who care about our boy's precious life enough to go out of their way and set something aside. And then I think of Harvest, who has lived away for all these years, and her friend Stella who has never met Calvin. My heart melts knowing—at eleven—they decided to make a difference in our son's life, and it almost kills me with the kind of ache I think I'd have if she were my child.

Thank you, Harvest. Thank you, Stella. Thank you so much for all the love you bring into the world.

Harvest (right) and her friend Stella

4.20.2015

angus and cannabis: kings aligning the stars.

Saturday was stellar, all the stars seeming to align. Calvin was cool and calm and he behaved himself in our favorite cafe where our good US senator, Angus King (I), showed up in jeans and a fleece-lined vest, book in hand and glad, he said, to be back home from DC for a spell. I apprised him of Calvin's progress with the THCa and CBD cannabis oils, telling him that since we'd first enlisted his support over a year ago in the fight to legalize medical marijuana at the federal level, Calvin had come off of 76% of his benzodiazepine and was walking mostly without support for the first time in his life. Angus seemed pleased to hear the news, to hear the “real stories” as he put it, which were what pried him out of his self-described skepticism of legalizing the plant, even for medicinal use.

By Sunday, chaos had replaced any order we'd seen the day before. Michael was at his studio busy writing a proposal and by noon Calvin had worked himself into a frenzy, shrieking often at who knows what, even in the car where he is usually calm. Dear Lauren stopped by, breaking the madness and monotony a bit, though regrettably witnessing my exasperation, which played out in some ugly ways.

“I don't know how you do it,” Lauren said, lamenting the fact that I can't simply take Calvin and Nellie for a walk to the fields, can't garden in the back yard while Calvin plays. She knows I'm forever shielding my son's eyes from staring at the sun and making sure he doesn't careen into plant or rock or eat and choke on the sticks and bark he picks up in his fists, and that he can't sit still for any length of time enjoying toys because of the pharmaceutical drugs, and that at times I'm paralyzed by fear thinking my son might die from the ills of benzodiazepine withdrawal.

Still, a beautiful day begged us to step into its tender, ripening blades, to cast our shadows on the earth and feel the warm sun kneading our backs, and so we tried. But Calvin, suffering from the benzo wean, wanted none of it and even whined when we put him in his trike. Later, I wrote in his journal, starring each of these:

*rapid heart on way to Woody's. *red face.
*chin rash. *poor balance. agitated.
*intense.
*shrieking for hours. burps.
*super stubborn. wouldn't walk down street.
lots of fingering!!!!
SEIZURE TONIGHT?

After a tearful embrace, Lauren left and not long after his four o’clock dose of THCa cannabis oil Calvin seemed to reset, enough to stroll around the yard then down the block a bit, where I bent Woody's ear and expressed regret at not being able to stay and knock at least one bourbon back. On the way home I was relieved to see Calvin walking quite well. It made me wonder what our good Senator King might be doing to align the stars by debunking the age-old lies about cannabis, and if he's doing anything to right the wrongs and hypocrisies of corrupt powers that are working so hard against legalizing a plant with obvious medicinal benefits, a plant that is doing so much good for our son.

Calvin did not have a seizure last night and even slept fairly well, no doubt in my mind because of the cannabis, which is hard at work aligning the stars in so many of our children's lives.

Calvin outside on Saturday, Photo by Michael Kolster

4.16.2015

getting out and getting down

Occasionally, I do get out and when I see live music I get down and this time I was lucky enough to get down up on stage with Dweezil Zappa and his amazing band of crazy musicians. I had myself a good ole time. For real. Then the shit hit the fan at home with Calvin, but oh well. He's doing better and at least I got my groove on if only for one night. Thank you, Michael, for helping to right the wrongs of life.

Photo by Andy Wainwright

4.13.2015

day two-hundred-twenty-one

Sunday

Even though it is only day six since his last seizure, which is on the short end of things, I had a bad feeling. This morning, Calvin had developed a rash on his chin, had red hot ears, was dishing out more than the usual dose of stubbornness, hadn’t eaten much, went bat shit crazy a couple of times throughout the day, and his hands felt warm—all harbingers of an impending event.

I took his temp before putting him down for a nap. The rectal thermometer read 100.3, so I gave him an acetaminophen suppository just in case. I went to rest myself and before I slid into bed I turned on the baby monitor remembering a time long ago when Calvin often woke into seizures during naps, and though it has been two-hundred-twenty-one days since the last time he had a daytime grand mal seizure, he did.

Perhaps it was the sun and the way it casts its spell on his eyes, drawing them up into its hot bright light at every chance. Or maybe I made him walk too far today, the first day of the year warm enough to go outside without a heavy coat in a yard that is finally mostly free of snow and ice. Maybe it was because he hadn’t drunk enough or that he is getting sick. Chances are, though, it’s mostly due to the benzodiazepine wean, which we’ve kept at fairly steadily for the past year, though in tiny increments hoping to limit the severity of withdrawal.

It was the rustling of Calvin’s duvet that snapped me out of drifting off to sleep, and because he wasn’t making any waking sounds I knew there was something wrong. Full on in convulsions he was safely on his side, so I was able to run downstairs to grab the THC rescue medicine from the fridge. I leaped up the stairs, opened Calvin’s lips and squirted the oil inside. His convulsions seemed to stop within several seconds.

He is sleeping now, in fits and starts, and seems to have a headache, or perhaps the THC is causing his head to reel. But he’s not had any aftershocks that I can see and he’s not crying like he often does in the wake of a seizure or after we’ve given him rectal Valium, another benzodiazepine, which the THC has allowed us to avoid.

I’m sitting here on my bed while Calvin sleeps. The baby monitor is on and from here I can see outside the leaves and needles opening up to catch the sun and I think I detect a tinge of green in the lawn. Michael is on the road and so my dear friend Lauren is on her way over to dine with me and spend the night in case things go awry. I just hope we don’t end up in the hospital again like we did in February.

This shit is scary because kids can die from seizures and benzodiazepine withdrawal, which does a heck of a job exacerbating them. When Calvin awoke the first time of many, pressing his palms into his roving eyes, perhaps in some kind of partial seizure, I gathered him up, kissed his neck and cried telling him I was sorry and that I wished he’d stick around for a while longer, this kid who often frustrates me and makes me crazy and who I love with every drop in my heart.

4.09.2015

face down in the earth

The day before another April snow, I traipse around the garden nudging a shovel into the ground searching for soft earth. Piles of ice, some as high as a couple of feet, remain in pockets of shade, but amid the thaw I see tulip tips and crocus buds pushing their way up through loose mulch.

Around the bend near the front of the house I nearly step on a bird. It must have hit the window and dropped onto the grass. On first glance I think it is a chickadee, but as I crouch down to study it, I realize I am wrong. I’ve never seen a nuthatch this close up and I am surprised by its downy bluish back and fluffy chest the color of peach flesh. Its black beak is sharp, its banded eyes closed, its little feet drawn up into its chest. Hoping it might still be alive, I gently turn it over searching for a heart beat, but there is none.

In a nearby bed I find a thawed spot at the base of a tree where I begin to dig a hole a spade’s length deep, and as I do I regard the bird which rolled face down when I laid it on the dirt. I right the bird and as I carve up the ground my mind flashes to the black man in the video from the morning news, Walter Scott, who was shot at by the white cop, the eighth bullet taking him down. The officer then cuffed the fallen man and left him, face down in the earth, to bleed out. Mr. Scott was unarmed, pulled over by the cop for a broken tail light on his car.

I look at the bird and wonder about its family, its mate, and consider how quickly its life came to an end, alone on the grass and found by a passerby. As I scoop piles of dirt and damp leaves onto the bird in the hole I think about what I’ll write, wondering if I should have taken a photo, then I recall all of the shots of found dead birds Michael has taken, and so I leave the bird, gently patting down its grave.

While writing this I listen to music woven with the songs of birds. A sadness washes over me knowing the man on the ground riddled with bullets will never sing and dance with his family again. I jump when a chickadee hits the window, craning my neck to watch it zip into a nearby tree. I try to imagine how many birds smash into glass each day. Some of them survive the hit, merely grazing the panes. We don’t discover them all, but thousands must run into trouble each day, and I am reminded that it’s the same for black and brown boys and men, our American brothers, being stopped and harassed, tasered, choked and shot by white cops in a game of racial chess where blacks are pawns. The majority of hits likely fly beneath the media's radar, their truths buried under a corrupt criminal justice system. Like birds into glass, some survive the blind assault though come away stunned, while others end up face down, then at least six spade lengths deep into the earth.

Photo by Michael Kolster

4.06.2015

moon over my weary head

I wake before dawn, the moon hanging bright and low in a cold, clear sky. Its aspect alone, having recently been full, is cause for concern, seizures often nesting in the wake of the moon's apogee.

As Sundays go, the day is full, Michael’s morning crepes sweet as our happy boy. We head out to get provisions for a special dinner celebrating my 51st-and-a-half birthday, an excuse for Michael to sate my recent state of cake-on-the-brain. The Rosemont Market is open on Easter, a day we always forget, so we take a scenic drive south winding through pastures laden with mud and white slush. At the market a glut of cars chokes the road, several churches clinging to its route, so against a bitter wind we must walk our boy several blocks, remarking on how well he does. I wonder, with the moon and all, if it's just too good to be true.

With cause to celebrate and a fire in the stove, at home we crack open the beer and the bourbon early, putting a loud needle to Led Zepplin while Michael makes me a cake. It's proving to be a fine day, indeed.

By seven Calvin is in bed and our guests have arrived. I've caught a good buzz, which I don’t want to lose, and though it has been ages since I’ve been drunk—a feeling I don't adore—I pour myself another.

Over salmon and soba slathered in anchovy butter we toast the fact that the four of us are gathered around a table. We laugh and muse over the college and on writing, photography and the community of our dinky town in Maine. They sing me half of a happy birthday song before we dive into a candleless cake and, not long after we say our goodbyes, I'm happily falling asleep.

The moon low in the sky again, I hear Calvin shriek. I run to get the syringe of THC cannabis rescue oil, crawling in next to him to squirt it under his tongue and into the side of his cheeks. Within thirty seconds his convulsions stop and soon after he is asleep.

It’s day eleven and I can feel the moon, like a wave of stones, waning over my weary, worried, aching head.

Photo by Michael Kolster

4.04.2015

benzo withdrawal syndrome

This is what we are dealing with, what our eleven-year-old son, Calvin, is dealing with and it's why we spent twelve hours in the ER in February fighting stubborn seizures. He's been on high doses of benzos (clonazepam and now clobazam) for nearly eight years. In hindsight, my guess is that his seizures were never debilitating or numerous enough to warrant treating him with benzodiazepines when there were many other options, albeit problematic in their own right, to choose from (he was having about a dozen seizures each month, not hundreds in a day, a week or even in a month like some children do.) And though I thought I had educated myself on benzos, it wasn't enough, because I wasn't aware of what you are about to read below. No one told me, and my concerns about their possible side effects were assuaged by his former doctors, which is, perhaps, their custom. I found out about it when it was too late:

Benzodiazepine withdrawal syndrome—often abbreviated to benzo withdrawal—is the cluster of symptoms that emerge when a person who has taken benzodiazepines and has developed a physical dependence undergoes dosage reduction or discontinuation. Development of physical dependence and or addiction and the resulting withdrawal symptoms, some of which may last for years, may result from either drug seeking behaviors or from taking the medication as prescribed. Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis, and suicide. Further, these symptoms are notable for the manner in which they wax and wane and vary in severity from day to day or week by week instead of steadily decreasing in a straightforward monotonic manner.

It is a potentially serious condition, and is complex and often protracted in time course. Long-term use, defined as daily use for at least three months, is not desirable because of the associated increased risk of dependence, dose escalation, loss of efficacy, increased risk of accidents and falls, particularly for the elderly, as well as cognitive, neurological, and intellectual impairments.

Benzodiazepine withdrawal can be severe and can provoke life-threatening withdrawal symptoms, such as seizures, particularly with abrupt or over-rapid dosage reduction from high doses or long time users. A severe withdrawal response can nevertheless occur despite gradual dose reduction, or from relatively low doses in short time users, even after a single large dose in animal models. A minority of individuals will experience a protracted withdrawal syndrome whose symptoms may persist at a sub-acute level for months, or years after cessation of benzodiazepines. The likelihood of developing a protracted withdrawal syndrome can be minimized by a slow, gradual reduction in dosage.

Chronic exposure to benzodiazepines causes neural adaptations that counteract the drug's effects, leading to tolerance and dependence. Despite taking a constant therapeutic dose, long-term use of benzodiazepines may lead to the emergence of withdrawal-like symptoms, particularly between doses. When the drug is discontinued or the dosage reduced, withdrawal symptoms may appear and remain until the body reverses the physiological adaptations. These rebound symptoms may be identical to the symptoms for which the drug was initially taken, or may be part of discontinuation symptoms. In severe cases, the withdrawal reaction may exacerbate or resemble serious psychiatric and medical conditions, such as mania, schizophrenia, and, especially at high doses, seizure disorders.


The following symptoms may emerge during gradual or abrupt dosage reduction:



An abrupt or over-rapid discontinuation of benzodiazepines may result in a more serious and very unpleasant withdrawal syndrome that may additionally result in:


Catatonia, which may result in death
Confusion
Convulsions, which may result in death
Coma (rare)
Delirium tremens
Delusions
Hallucinations
Hyperthermia
Homicide ideations
Mania
Neuroleptic malignant syndrome-like event (rare)
Organic brain syndrome
Post-traumatic stress disorder
Psychosis
Suicidal ideation
Suicide
Urges to shout, throw, break things or harm someone
Violence

No child should have to go through this. Thank nature for cannabis, which has seemed to make all of this misery a little bit easier on our sweet little kid.

Excerpts taken from Wikipedia

4.02.2015

mr. sullivan's kids

Yesterday, I visited Mr. Sullivan's fifth grade class at Calvin's school. Each year, a handful of teachers take me up on my offer to come and speak with their students, grades two to five, about Calvin and epilepsy. To be honest, and though I know the teachers are uber-busy, I've been dispirited by the lack of interest, though quickly buoyed when I visit the few who take me in.

Upon entering, the kids gathered around my feet at the front of the room. By a show of hands it looked as if all of them know who Calvin is, even in a school of six-hundred kids. I started by telling them that he was born six weeks early missing part of his brain—some of its white matter—its super highway, I called it. I told them that it takes Calvin a really long time to learn things, which is partly why, at eleven, he is only now beginning to walk completely by himself, the other hindrance being the drugs he takes for epilepsy. I talked about those and mentioned the cannabis and went on about everything in between.

Then, I opened it up for questions, inviting them to ask me anything about Calvin and about epilepsy. Their questions were good. Here are just a few:

Is he allergic to any foods? What activities does he like to do? How long do his seizures last? How many does he have? Even though he can’t talk does he like to make sounds? What kind of music does he like? Can he do things with his bones?

I told them:

He’s not allergic to any foods though he is on a gluten-dairy free diet. He loves to walk and trike and eat and hug and laugh and get tickled and spin in his johnny-jump-up. He has about three or four seizures a month which usually last several minutes, though once he had one that lasted nearly an hour. He loves to make sounds and said, MAMA, once, before the seizures and the drugs. He loves upbeat music. His bones seem strong but he lacks good coordination, partly because of the drugs.

I mentioned that not all people with epilepsy are like Calvin, that in most cases you’d never know it unless they told you or you saw them have a seizure. I tried my best to define words like prevalence and stigma and debilitation and addiction and side effect.

When I told them that Calvin’s only sign is for the word hug, a sweet girl to my left squirmed with delight, twisted her arms into a pretzel and said, "That's so cute!"

Mr. Sullivan noted how Calvin's eyes appear much brighter in his baby pictures than they do now and he wondered if it was because of the epilepsy. I surmised that it's likely stupor caused by the drugs, then added that Michael reminds me often that photographs don't always reveal the truth.

I instructed the children on what to do if they see someone having a seizure: protect their head, clear away any potentially harmful objects, put them on their side in case they vomit and to never, ever, put anything into their mouth. I told them to point to a specific person and say, “You! Call 911!” because, if left up to bystanders, the call might never be made.

“But that might make that person feel uncomfortable,” one boy remarked.

I went on to explain that, in life, it isn’t bad for us to feel uncomfortable when we are faced with supporting a good cause or standing against something that is wrong—like defending kids who are being bullied—and that stepping out of our comfort zone often helps us grow.

As I said this, looking into the students’ eyes, I imagined other examples needing compassionate support. I thought about gay people facing sanctioned discrimination led by a bigoted Christian Right. I thought of black people oppressed by this country’s racial caste system, of sons and brothers, husbands and fathers being stopped and frisked, shot unarmed, imprisoned by legions, discriminated against in every aspect of life. I thought about the people with autism and Down syndrome who’ve been assaulted by security guards sometimes leading to their demise. I thought about women who are cat-called, misjudged, beat up, underestimated, patronized, ill-treated and systematically over-looked, underpaid and over-charged, their bodies regulated by conservative congressional men. I thought about the immigrant who is misunderstood and maligned and the fast food worker who is overworked and grossly underpaid and the homeless gents who are displaced, neglected, doused, beaten, burned and sometimes shot.

I ended by telling the students what I always do, which is that Calvin is the best person I know because of his his purity, tenacity and boundless reservoir of unconditional love. And as I left the class I thought, if just one of Mr. Sullivan's kids grows up to be a champion for others less fortunate than themselves, the world will be a better place.