ice storms

ice storms: rousing. beautiful. treacherous. unpredictable. silent. unnerving. still. winsome. smothering. haunting. worrisome. electric. luminous.

seems apt that my boy calvin was born into one.

a good time was had by all

The kid picked himself up and dusted himself off on Christmas morning after a difficult Saturday full of partial seizures. Despite the worry and sleep deprivation because of my son, plus all the horrors that are going on in the world, yesterday I was able to enjoy some peace and quiet hanging out with Calvin as he crawled and stumbled around and "played" happily by himself while Michael cooked a Christmas meal.

Yes, a good time was had by all. Calvin was a joy all day and he went right to sleep at bedtime. He slept soundly through the banter of six lively diners just one floor below who passionately discussed politics, books, photography, responsible journalism in the age of what's-his-face, and included a number of (mostly my) dirty quips. Yesterday ended up being one of the nicest, stress-free Christmases in recent memory.

These glimpses of relative normalcy are what keep me going in the long run, and I am grateful to the stars and back that such can be so.

christmahanukwanzaakah

There was very little that was merry about yesterday; our sweet boy endured a dozen or more partial seizures from dawn until well after dusk. I laid with him in his bed upstairs all day as he napped on and off, waking only to have the next seizure. At times he'd cry with a look on his face as if imploring me to make his hurt stop. I threw extra Keppra down him plus several doses of extra THCA cannabis oil but nothing seemed to stop the fits. There is little doubt in my mind that he was suffering at the hands of the benzodiazapine withdrawal, which I had reinstated three weeks ago.

Even so, I manged to get outside just after sunset to walk Nellie at the fields, which were shrouded in mist, while Michael stayed home with the kid. He'd spent much of the day doing the grocery shopping for two holiday meals and preparing our annual Christmas Eve dinner and dessert. Though we are not Christian, we enjoy celebrating some of the secular traditions of the holiday, namely the Kolster family bourbon eggnog.

After we put Calvin to bed and kissed him goodnight, I slipped out again with Nellie off-leash, treading on the icy sidewalks to see Woody, my octogenarian friend who lives three doors down. He let us in and, in usual form, offered me a bourbon on the rocks. I declined this time, then went into his den to pet Trixie the cat who was curled up in front of a fire. Nellie joined in and licked her ears. Before leaving, I gave Woodie his gift: a bottle of blended Canadian whiskey, his drink of choice. He hugged me and, with rosy cheeks that I kissed, said, "You guys are the best. I love you." I returned the sentiment, wishing him a happy Christmahanukwanzaakah as I left. Woody chuckled and waved goodbye.

I shuffled home, entered a warm, aromatic house and poured a couple of much-needed eggnogs for me and Michael, who had been busy putting the finishing touches on a rack of lamb, a potato and celeriac gratin and bouquet of dainty asparagus. With Calvin in bed, we sat at the table, candles lit, poured ourselves a bit of Cotes du Rhone and recounted the day's sorry events. Still, I was quite humbled, thinking of the Syrian refugees and other immigrants who have endured a most harrowing year, every scrap of their existence, including loved ones, left behind or violently taken. I considered our afflicted child, weighing our difficult circumstance against all we have: a cozy home, Michael's solid employment, plenty of food and drink, running water that is free from lead, a loyal pup, an affectionate child, a lovely garden even in winter, and a seemingly infinite supply of music, friends and love. Again, I realize our immense privilege.

Tonight we host Christmas dinner for some of our favorite secularists. On Michael's menu is a spiral cut hickory-smoked ham, cauliflower gratin and roasted Brussels sprouts. And with those less fortunate in mind and those facing uncertainties of other myriad kinds, some of whom we've donated to in lieu of giving gifts, I'll no doubt be toasting that which is paramount now perhaps more so than in recent years: for love and compassion to conquer fear and hate.

hopes, regrets and lamentations

hopes:

Fewer seizures in two-thousand-seventeen. To get Calvin safely off of his benzodiazepine. Time in warmer climes. To hear Calvin speak a word. More time outside. For the world to be at peace. Continued health. More time to write. To see more of my peeps. Forgiveness. To become a better human being. For the liberty of those who live under tyranny. The understanding of others. Love and humanity. An end to war and starvation. Leaders who are deserving of respect and admiration. More time to read and sleep. Freedom and equality.

regrets:

Self pity. Cranky mama. Selfishness. Missed opportunities. Falling-out. Staying put. Loss of contact. Too few walks through the woods. Not getting to San Francisco, Seattle or New York. Not drinking enough water. Impatience. Resentment.

lamentations:

Too many seizures. Too many missed days. Ugly Americans here and abroad. Racism. Bigotry. Misogyny. The regrettable exit of President Obama and his family. Monotony. Frustration. Dread. The election of an infantile, boorish, ignorant, dishonest, narcissist fiend. Greed. Corruption. Dying children. Torture. War. An incoming loser with a facile and grossly limited world view. Hate. Despots. Oligarchies. Fascism. Cowards. Fools.

Photo by Michael Kolster

no merciful god

A zillion tiny white flakes fall from the sky, some form swirling clouds while others drive with apparent purpose to the ground. Each, I think to myself, stands for one of us, each a unique example of a precious life that will come and go on this earth.

Today I watched several videos of grieving victims in Aleppo—mothers, daughters, brothers, fathers, sons—survivors of attacks by Russian and Syrian barrel bombs and guns. As I rested under my down cover and watched the flakes fall, I pondered my fortune to have been born in a time and place that is—at least for now and for me—free from tyranny and war.

I see the images, and others filmed in Venezuela, South Sudan, the Philippines, and marvel at the world’s misery wondering if someday—perhaps soon, and because of the troubling incoming administration—it will be our own.

Today is one of those days when I keenly feel the weight of what it is to be a caregiver of an afflicted infant-toddler-tween these past twelve years—the monotony, the restriction, the sleep deprivation, the worry, the dread, the frustration. And then I page through hundreds of photos of Syrian civilians—their skin stretched tightly across hollow faces, their dirty hair and garb tousled with blood, boys holding dead baby brothers, parents grieving the loss of every one of their children, some of them burned or buried alive, motherless toddlers bloody and in shock over the shelling of their homes—and I know I have no reason to complain. I know without a shred of doubt that there can be no merciful god.

During the night the flakes turned to rain. A glossy crust now cakes a snowy plain and a mist has replaced the wind. Branches sheathed in ice melt revealing their winter hues—rust, deep emerald, cardinal red. On the other side of the world, Aleppo appears in shades of gray with black holes gaping where windows used to be, like so many mouths’ silent screams.

We have a child who wants for nothing but to be warm and fed and loved, which is partly why we don't participate in giving gifts this time of year. Instead, we give to those in need of food and shelter and clothes, those who find themselves, for no good reason and in glaring absence of a merciful god, homeless and starving amidst swirling clouds of smoke, bits of shrapnel and rubble from fires and bombs and guns.

@picture-alliance/abaca/M. Sultan/

a hard rain's a-gonna fall

Because Aleppo, because tyranny, because the hard rain that has already begun falling in this nation, because Bob Dylan, because Patti Smith, because the power and beauty of music that calls us to think and weep, resist, ponder and dream.

Oh, where have you been, my blue-eyed son?
Oh, where have you been, my darling young one?
I’ve stumbled on the side of twelve misty mountains
I’ve walked and I’ve crawled on six crooked highways
I’ve stepped in the middle of seven sad forests
I’ve been out in front of a dozen dead oceans
I’ve been ten thousand miles in the mouth of a graveyard
And it’s a hard, and it’s a hard, it’s a hard, and it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, what did you see, my blue-eyed son?
Oh, what did you see, my darling young one?
I saw a newborn baby with wild wolves all around it
I saw a highway of diamonds with nobody on it
I saw a black branch with blood that kept drippin’
I saw a room full of men with their hammers a-bleedin’
I saw a white ladder all covered with water
I saw ten thousand talkers whose tongues were all broken
I saw guns and sharp swords in the hands of young children
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

And what did you hear, my blue-eyed son?
And what did you hear, my darling young one?
I heard the sound of a thunder, it roared out a warnin’
Heard the roar of a wave that could drown the whole world
Heard one hundred drummers whose hands were a-blazin’
Heard ten thousand whisperin’ and nobody listenin’
Heard one person starve, I heard many people laughin’
Heard the song of a poet who died in the gutter
Heard the sound of a clown who cried in the alley
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, who did you meet, my blue-eyed son?
Who did you meet, my darling young one?
I met a young child beside a dead pony
I met a white man who walked a black dog
I met a young woman whose body was burning
I met a young girl, she gave me a rainbow
I met one man who was wounded in love
I met another man who was wounded with hatred
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall

Oh, what’ll you do now, my blue-eyed son?
Oh, what’ll you do now, my darling young one?
I’m a-goin’ back out ’fore the rain starts a-fallin’
I’ll walk to the depths of the deepest black forest
Where the people are many and their hands are all empty
Where the pellets of poison are flooding their waters
Where the home in the valley meets the damp dirty prison
Where the executioner’s face is always well hidden
Where hunger is ugly, where souls are forgotten
Where black is the color, where none is the number
And I’ll tell it and think it and speak it and breathe it
And reflect it from the mountain so all souls can see it
Then I’ll stand on the ocean until I start sinkin’
But I’ll know my song well before I start singin’
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall 


Written by Bob Dylan and performed by Patti Smith

steeled for the storm

The solstice on its way, days are getting shorter and colder, and just today snow has done its wonders to change the look of things. Broad-leafed rhododendrons curl up like cinnamon-stick figures and bows hang low under an icing of white. Some of these days are dark for me, what with Calvin's seizures, an election gone wrong, and the making of what appears to be shaping up into a Trumpian empire of greed and despotism.

My boy is home sick today, having suffered a grand mal yesterday morning only five days since the one before. These illnesses lower his threshold, perhaps leaving his brain ripe for electrical storms. I steeled myself a week ago and reinstated his benzodiazepine wean. The plan is to reduce it every week by a mere 0.04 mgs twice a day. At that rate—and at his current dose of 2.84 mgs per day (down from a high of 35 mgs) it will take about another year to get him off of it completely. Having said that, I may slightly increase the titration to 0.06 mgs while halving its speed to make the math a little simpler and to give Calvin a longer break between each wean.

The recent two-month pause in the withdrawal has seemed to reinforce my logic that one way to escape withdrawal seizures and other withdrawal side effects is to get him off of his benzo, clobazam, aka Onfi, once and for all rather than hover at the same dose for part of eternity; as long as he is on it he will continue to habituate, causing withdrawals. Until then—and likely for months after its total elimination—he'll probably continue having withdrawals which, ostensibly, should fade over time. My hope is that once he is free and clear from the drug, his number of seizures will improve, as will his balance, behavior, focus and well-being.

As I sit here writing this, free-form, I realize that my son's painful and protracted drug withdrawal stirs emotions not unlike what I am feeling about the election outcome and the prospect of the incoming administration. I'm afraid, feel sick to my stomach at times, dread the future, and suffer some despair with each electric-shock-of-a-nomination that the orange demagogue puts forward. Like with my son's regimen, my mind is laser-focused on how we can get out of the mess we are in, the minority of American voters this election having chosen someone who is so painfully ignorant, narcissistic, dismissive, impulsive, dishonest, crude, unprofessional and unfit to lead this nation.

Perhaps it would help me to think of the baby-man with the bad comb-over as nothing more than a toxic drug, one that has terrible side effects—depression, insomnia and nausea being just a few—and can wreak havoc on the body politic, though is not immune to being flushed, once and for all. If done painstakingly, we can emerge from his smothering (I'm thinking of snow again) in an improved state having weathered the very worst. We just have to steel ourselves for the storm of the century, and think ahead to spring.

day six

He tipped over in the bath as the water drained from the tub. He shouldn't have; it was shallow. I let the our new nurse-in-training know that this was one of the signs I often see the night before a grand mal. It had only been five days since his last big seizure, so I mentioned that this omen—in and of itself—was not necessarily cause for alarm.

After I put Calvin to bed I noted in the daily journal many of the day's other harbingers:

*repetitive humming *not at baseline *warm red ear *didn't finish lunch *loud at home *poor balance *tons of eye poking *unusual screech in bathtub *rashy butt *tons of drooling *lots of rocking in chair at school *needs to poop *confused at 6:00 pm (walking in circles) 

Despite the fact that I gave him a little extra THCA cannabis oil at bedtime, hoping it might thwart another seizure (he'd had two partial seizures the day before), he suffered a grand mal just before five this morning. I never know what triggers them or why sometimes they are more frequent than at others.

As the months pass, Calvin grows, and we reduce his benzodiazepine slowly, he is gradually having slightly more seizures. My fear of this trend causes me to want to stop the benzo wean completely, but I know if I do he will likely continue to suffer habituation and withdrawals. The only way to free him of these, in my best estimation, is to get him completely off of the benzo once and for all. So I push my fears aside and continue chipping away at his dose by tiny bits, hoping his brain won't suffer such bad hits.

I'm trying to think ahead to a time where, if things get much worse, we might need to turn again to the pharmaceutical world for some new and promising med. Besides the benzo and two cannabis oils, Calvin is on no small dose of Keppra, which is why I want him off of the benzo in case we want to start him on another drug. My hope is that Epidiolex might be available soon, the drug made from plant-derived cannabidiol (CBD) which is in trial right now. It seems the logical drug to choose considering Calvin has failed ten chemical ones, plus he has responded so well to the THCA oil I make.

He's at school now, having gone in late today. Extra morning THCA oil seems to work to keep the partial seizures at bay. Yesterday, we had our first significant snow, and it's on the ground melting. I kid myself by saying that it's only three months until spring. I hope the winter takes it easy on us this year. We could use a break.

Photo by Michael Kolster

under my skin

It’s a Saturday night and I’m feeling frustrated, angry and sorry for myself. While other mothers might’ve slept in past six or taken their twelve and thirteen-year-old sons to hockey practice or out to breakfast or shopping for clothes, or perhaps sent them to a friend’s house to play, I took care of an agitated kid whose misery I couldn’t translate. I wrote in my daily "Calvin" journal:

*banging a ton *intense *hyper *very stubborn trying to walk him past Woody’s house *seizure breath *terrible job at grocer WORST BEHAVIOR IN A LONG TIME TODAY. exasperating. *warm red ears SUPER AGITATED *not eating or drinking much *grousing like something hurts ... feels like another seizure coming already

A few times I lost my patience, raising my voice at my howling kid, whose constant whining was getting under my skin.

By evening, a half hour or so after I gave Calvin his nighttime dose of benzodiazepine, he had calmed down some, and we’d put him in his bed to play with his toys for a bit while we fixed things for supper. When we went back upstairs to ready him for bed and to give him his last few meds, we found him sitting in his own shit, which had squished out of his diaper, up his back and inside his shirt, smeared onto his linens and onto some of his toys. And though the mess could have been much worse—and it has in the past—it still added to the weight of a miserable day.

Earlier, I had watched Calvin squirm in Michael’s arms, watched his pendulous eyes rhythmically shift and dart the way they're prone to do. I imagined what we would be doing had Calvin been born a typical child instead of one missing a bunch of the white matter in his brain, instead of suffering seizures, instead of being addicted to antiepileptic drugs that don't work to stop the fits. Perhaps he’d be helping me chop tomatoes and avocado for a salad, or maybe he’d be scrolling through some of his Dad’s new photographs. Maybe he’d be reclined in front of the fire reading a new book, or perhaps he'd be outside walking Nellie, or curled up on the couch doing some homework, or just hanging out telling us about his day. And, at bedtime, he’d get into his own pajamas and brush his own teeth and crawl into his regular old bed and pull the covers up all by himself.

Then he'd tell me with real words—the kind that would soak luxuriously under my skin—I love you Mom, good night, I'll see you in the morning.

Photo by Michael Kolster

how we roll

After pausing my son’s ridiculously protracted benzodiazepine wean for two months due to a pretty bad early November, Calvin went eleven days without any seizures; he didn’t even have any partial ones. The stretch felt luxurious and was sprinkled with only a few each of brief tantrums, manic spells and restless nights. And though he suffered a grand mal this morning just before four, he recovered well enough by ten o’clock to send him to school.

During the first two years of Calvin’s benzo (clobazam, aka Onfi) wean, we gradually eliminated thirty milligrams of his overall daily dose of thirty-five mgs (which is equal to an adult dose but okayed by a neurologist for a ten-year-old who weighed less than fifty pounds, despite the habituation and side effects we believed it was causing). Despite what we thought was a slow wean, Calvin suffered large spates of seizures, one hospitalization because of them, and several horrendous incidents of withdrawal in which he writhed in pain for hours at a time, looking at me through his tears as if asking me to make it stop. He was in such misery I thought he might be passing a kidney stone. Having slowed the wean as a result, however, and looking back, I now know those episodes were due to an overly swift withdrawal. So, we ratcheted back on the size and frequency of the reductions, and the painful spates disappeared.

In the past year we have reduced Calvin's daily benzo dose from five milligrams to just three, which is less than ten percent of his highest dose if we account for his weight gain. And though I’m proud and relieved to have gotten this far, and eager as ever to get him off, I’m afraid to eliminate it too quickly. So, at the current rate it will take at least one more year—for a total wean lasting three-and-a-half to four years—to get him completely off of the drug safely and comfortably.

In the meantime, I have adjusted his Keppra slightly up, as well as his THCA cannabis oil, both with hope of curbing his partial seizures at least. I’ve kept his CBD cannabis oil the same to limit the number of variables. Prior to this regime, in any given month Calvin experienced four to five grand mal seizures and a dozen—give or take a few—partials occurring on eight or nine days of the month, which means he's missed a lot of school. And while this is far from ideal, it is not too much worse than his worst months when he was taking ten times as much benzodiazepine. And of equal if not greater importance is the vast improvement we have seen in his behavior, sleep and focus while taking the smaller dose. And, hopefully, the increased Keppra and THCA will allow him to have more good stints like this recent one.

So, we will keep on truckin’, but we’ll stop when we need to, rest for a while, get our bearings, and then keep on truckin' again. With epilepsy, it's just how we roll.

If you cannot view the video below, you can watch it on You Tube here.

sorry truth

One of my deepest fears is waking up to find my twelve-year-old son Calvin in his bed, lifeless. To some, it may seem a foolish or exaggerated worry, but to parents of children with epilepsy, particularly the kind Calvin suffers, which is resistant to medication, it's the sorry truth. In a given year, Calvin has a one in ten chance of meeting this end due to SUDEP: Sudden Unexpected Death in Epilepsy, which I liken to SIDS, but for people with epilepsy.

What might be more vexing and emotionally complicated, though, is the thought that our severely disabled, non-verbal boy will outlive us. Before the presidential election, I read an essay by the father of a boy with autism. He implored his readers not to vote for Trump whose policies, he feared, might threaten the services and health care protections enjoyed by their son. He went on to explain that he and his wife hoped that they would outlive their son by just one day because of their deep-seated angst that no one would be able to care for him in ways necessary for his health, happiness and well-being.

Daily, perhaps, I have similar worries. What if I have a fatal heart attack or stroke or fall down the stairs and break my neck, particularly if Calvin were with me. Who would care for my precarious child in the fragile moments after such a malady? Would he fall down the stairs trying to navigate them by himself? Would he get distracted by the sun streaming in through the window and let go of the handrail? Would he trip on the carpet and crash head first into the radiator? Would he accidentally turn on the stove, grab a knife by its blade, accidentally put a hand through a window? Imagining his confusion, want and need in such a scenario makes me quake.

My angst treads deeper, though.

Who would love my boy? Who would delight in hugging and kissing him and accepting his many embraces? Who would let him curl up in a fetal position beside them, his arms tightly clasped around their neck? Who would endure his drool on their hands and face, the grating sound of his oft grinding teeth, his shrieking, imbalance, sudden manic outbursts, seizures. Who would know what medicines to give him, how much of them and when? Who would make his cannabis oil? Who would know when he needs to be burped? Who would know just where he is most ticklish, if he is hungry, thirsty or needs to poop? Who would change his diapers? Who would be tender and loving to my growing baby of a boy?

Calvin is one of the reasons I continue to mourn the recent election and worry about the most vulnerable and identifiable who are left reeling in its wake—the Disabled, People of Color, immigrants, Latinos, LGBTQ people, Muslims, women. I’m baffled that so many Americans still don’t recognize their Straight White privilege, and I fear others who assert their White supremacy. I'm dismayed that the worry and anger some of us are feeling about the prospect of the impending administration—one that is shaping up to be quite ugly and menacing to so many—is contemptuously laughed off by the small-minded as mere childish tantrums of sore losers. The smug notion and its authors sicken me.

Many wise people have said that a nation is judged by the way it treats its most vulnerable; no doubt Mr. Trump and his goons are already taking us to a failing grade: F for fucked up, and I don't mean that lightly.

As a woman, who as a girl endured bullying and ridicule by boys and men, who as a teen survived sexual harassment by a strange young man, who as a woman was grabbed in the crotch by a passerby, and was again sexually harassed by a perverted White guy, who’s been neglected, interrupted, steamrolled, mistreated, scapegoated and glossed-over by White male relations and peers, as the friend of Black men and women who have been maligned and mistreated, and of Muslim women, Jewish, Latino and gay friends who are scared, and as the mother of a severely disabled child with a chronic illness who has at times been gawked at, scorned, sidelined, misunderstood and neglected by professionals, I worry about what is to come under Trump.

Like the prospect of my son's untimely death, my worry for the most vulnerable of us under the next administration is not foolish or exaggerated ... it's the sorry truth.

Photo by Michael Kolster

thanksgivings

hubby. food. shelter. water. heat. peace. the kid. sisterhood. grace in the face of loss. kindness. wood stove fires. calvin's smiles and hugs. gatherings. nellie. community. pink sunrise. love. brothers. good night's sleep. my peeps. civil rights. dry-brined birds. philanthropy. neighbors who rake our leaves. rain. bourbon. handsome hats that girlfriends knit. charity. quiet streets. good reads. humor. pie galore. forgiveness. sky. gma and gpa and the rest of the gang. reflection. compassion. cannabis oil. hope. rhododendrons. free speech. diversity. twilight. candlelight. stars. goose down. brussels spouts. art. beauty. hmong stuffing. writing. empathy. wine. music. justice. rivers. sisters. trees.

Photo by Michael Kolster

underneath a sky that's ever falling down

Here we are

Stuck by this river,

You and I

Underneath a sky that's ever falling down, down, down

Ever falling down

The verse floats in an expanse of white adjacent to a similar page with only two typed words: For Christy. I wiped a tear away before it might have stained my husband’s newly published book, Take Me To The River, a heavy one splayed open in my lap.

The words seeped into me. I felt them ache in my bones. I do feel stuck ... in this town by the river. The sky does feel as if it is ever falling down—Calvin’s increased and relentless seizures, his many missed days of school, the recent election of a man whom I wager may never earn the respect I require to call him my president. Life feels bleak. No way out. This sinking feeling.

I woke up to the season’s first dusting of snow. Though I’ve relished the dry, mild days this autumn, the white was a welcome change to the drab drudgery of same. My boy is having seizures on average every couple-few days. The grand mals, albeit reliable, come slightly less frequently, though still too often. I wish I knew the culprit, and I find myself asking the same questions:

is it the moon? the barometric pressure? puberty? is it too much medication? not enough? is it the benzo withdrawal? a growth spurt? lack of sleep? constipation? stress of the election?

Never can I know. But whatever the culprit, we are stuck, Calvin and I. We are literally and figuratively going nowhere, spinning our wheels in this goofy little town in Maine, my boy and I treading in the same sorry circles that we have for years, forever within inches of each other.

Yes, the sky is ever falling down. As if the election outcome was not bad enough, last week I had a knock-down, drag-out fight with someone I love. He began by playfully needling me about the protesters, many who are from marginalized and vulnerable communities—women, Latinos, African Americans, LGBTQ people, the Disabled. At first I chuckled, then mentioned his White privilege. He bristled, stated the obvious—that people are born equal—then went on to say that folks simply need to work hard to get ahead. I emphasized that, although we are born equal, we come into this world in unequal circumstances, some of us with clear advantages and some without (I think of Calvin). He rebuffed well-documented truth that being White means enjoying better odds of avoiding stop-and-frisk, harassment, hate crimes, arrest, fines, incarceration, harsh sentencing and capital punishment. Being White means enjoying a greater chance at being picked up by a taxi cab, renting an apartment or securing one on Airbnb, getting that job interview, getting the job, getting the promotion, a better chance at being given a loan and being free to vote. Our White children enjoy better odds of avoiding corporeal punishment at school, bullying, detention, suspension, being hand cuffed, being shot by a neighborhood watchman for wearing a hoodie, or by the police for playing with a toy gun. When you are a Person of Color, especially if you are Black, it doesn't matter if you are a hard worker, a veteran, a student at Yale or a Harvard professor; to some, you're considered fair game.

During most of our conversation I remained calm despite his frequent interruptions; I pride myself on being capable of having an adult exchange even about controversial subjects. Partway through, though, he began raising his voice and barking, as he is sometimes wont to do—Christy! Christy! Christy! He began steamrolling over me. From there it escalated, because I wasn’t about to submit to such lame ass bullshit harassment. In the end, I was screaming at him full-throttle just as he was yelling, until I heard the line drop.

Stepping into the cold yesterday, tiny flakes falling over me like ash, I reflected on that conversation. What I saw clearly in play this time was the sexism—the bullying, interruption, false accusation—regrettably all too familiar and yet only now palpable to me. Nellie pulled me along at a good clip. I set her free at the fields where she ran like mad with the other dogs. I often marvel at the female creature—fierce, strong, confident, fearless. She could tear a male opponent apart; she receives no social cues deriding her gender, faces no imposed barriers or hurdles, isn’t defined by her features. In many ways, she and I are the same; I have lifted my weight in iron. In other ways she has the advantage; I was born into a patriarchy.

Once home, I bought an airline ticket to Washington DC for a flight the day after what's-his-face's inauguration. If Calvin were healthy, able-bodied and cognizant of such things, at just shy of thirteen-years-old, no doubt he'd be coming along. It grieves me deeply that I cannot bring him. I’ll be there not only to protest the inauguration of a miscreant—a dangerous man, a clown, a sexual predator, a bigoted, greedy, misogynistic, racist, xenophobic, tax-dodging, fraudulent white supremacist—but mostly to celebrate women, and our rights, alongside other fierce, strong, fearless humans. We'll all be there underneath the same sky that, of late, has been falling down, down, down. But we'll use our love for each other and our righteous strength in numbers to lift it up to where it belongs.

March on Washington, 1963

bitter pills

On this rainy day, my boy is home with me again, suffering a spate of partial seizures—nearly a dozen—which I have yet to quell. While none of them have been grand mals, they’ve included scary ones in which he trembles and kicks violently, a terrified look on his face as if he’s seen a demon. I loathe them all.

I often think of epilepsy as a fiend. It berates Calvin’s brain, crushes his possibilities, has quashed his ability to speak. The drugs he must take—which don’t work to fully control his fits—adversely affect his behavior, his cognition, his coordination and gait. The fiend has robbed us of many of our dreams, pushed us to the brink of so many things—society and sanity come to mind—and into relative quarantine where we are literally imprisoned, in our state (because of cannabis prohibition) and, on days like today, between these walls.

In the days since the election, in the wee hours after Calvin’s predawn seizures, I lie awake, weary and worrying about our country. I realize I feel similarly about epilepsy as I do the incoming administration: I fear what it might mean for our most vulnerable. With the president-elect's most recent, antisemitic advisory pick, I'm reminded of his own penchant for eugenics, reminiscent of Hitler’s loathing of Jewish people and innocents like Calvin, which lead to their extermination. I witness the narcissist's bizarre lust for attention, his repulsive habit with women, his abhorrent treatment of others, and his contempt for non-Whites as an assault on everything decent in America. And though I have not been personally or literally attacked, I feel the wounds of other women, of Jewish and Black and Muslim and Immigrant and Mexican and Disabled Americans.

While writing this, I came across the photo of the painting below made by a Bowdoin College student in the wake of the election. In its rawness, I see anger and frustration, the whitewashing of our fifty states, the splintering and marring of a nation. It made me wonder, if Calvin could hold a brush—if the epilepsy didn’t stifle his forward movement toward a better, stronger place—if he’d be painting something similar, making his mark and expressing his disaffection.

As with epilepsy, I loathe this president-elect's candid hopes to berate his critics, to crush immigrants, to torture foes, to punish women, to limit speech in the form of free press and peaceful protest. Like a toxic drug, I see evidence of how his rhetoric has adversely affected the behavior of some in his body of followers. Like a chronic disease, I wonder if this man and his minions will rob us of our rights and dreams, push us to the brink—society and sanity come to mind. Will he round up and imprison our beloveds? Will he blight us and the respect of the world?

Like a contagion, his contempt and hatred is spreading. I've heard privileged people call the peaceful protests of those who oppose the crude and immoral things this man has said and done as "nothing more than temper tantrums" and a "crybaby diaper brigade." Their smugness and apathy for those who are afraid, angry, hurting and simply exercising their first amendment rights, like the bitter pills Calvin takes, do nothing to heal, yet leave a horrid taste.

Untitled, by Frankie Ahrens, acrylic on wood scrap

bad mandates

The scent of coffee filled my nostrils as I called downstairs to Michael to give me the news.

“I’m sorry, sweetie,” he said somberly, and I hoped that he was kidding.

The blow struck me hard, kind of knocked the air out of me like a punch in the solar plexus. The news was devastating; I’d been hoping and lobbying long and hard for an end to our nation's two-hundred-year patriarchal paradigm and for the election of a kind, brilliant, ridiculously experienced woman. I felt we were on the verge of making history, felt as if a great sea change was at our fingertips.

Downstairs, I opened my laptop and began typing, congratulating a couple of Trump supporters who I’d debated with on and off this past year. Then I read a personal message sent to me by another who had at times commented on some of my posts, someone I’d vaguely known since grade school. He wrote:

Any Well Wishes of Congratulations from Christy Shake or is she a sore Loser?

I thought to myself—before pointing out what a sore winner he'd been by gloating and badgering me—this is just the beginning.

All day long I worried that Trump’s election will serve as a mandate for atrocious behavior, a sanctioning of his own abhorrent attitudes and rhetoric about women, Muslims, Mexicans, African Americans, immigrants and the Disabled. Silently, I fear for myself and for my friends:

Will gay marriage be overturned? What about Roe vs. Wade? Will women who seek abortions or who have "suspicious" spontaneous miscarriages be charged and imprisoned like in some other countries? Will our beloved immigrant families be ripped apart by deportation? Will the candidate of law and order endorse racial profiling, vigilante justice, increased capital murder? Will twenty-million people lose their health insurance? Will women be further subjugated and objectified, scapegoated, abused, wrongly maligned and mistrusted?

I thought back to a day nearly two decades ago when I lived in San Francisco. Feverish and slightly faint from strep, I left work around noon and began my walk to the bus. A man who had been following me suddenly rushed up from behind and brazenly hoisted my skirt high above my waist revealing my thong and bare buttocks. When I turned to the stranger and asked his name (in hindsight, I should have kneed him hard in the balls, for starters) he strutted alongside and smugly offered it to me. When I then asked to see his driver’s license, suddenly realizing my intent he attempted to bolt. I wonder if Trump’s election will embolden this kind of assault.

I then recalled a few years prior when I’d been laid off from a decent job, remaining woefully unemployed for the next nine months. As I worked full time looking for a job, I eventually spent what little savings I had on rent, and so began paying it, along with other bills, by way of advances on my credit card. In those nine months I racked up over ten-thousand dollars of debt. Once I got a job at Levi Strauss, I still didn't have health insurance since I'd been hired as a temp. During those few years I had to access a neighborhood women’s health clinic, likely run by Planned Parenthood, for my annual exams, birth control and medicine for strep. I wonder if the Trump administration will abolish access to healthcare for people who need it most.

In the hours since Trump’s election I’ve heard some sorry stories from friends and neighbors:

A red-faced man, mid-fifties, leaned out the passenger window, stabbing his hand at me with index and pinkie raised, screaming ‘TRUMP! TRUMP! TRUMP!’ while glaring into my eyes ... My car has a Clinton sticker. And a slightly scared mom.

and:

It's already begun. A friend was walking along here in NYC and someone driving a U-Haul yelled, "Hey, homo. So what do you think of president Donald Trum‎p?" The end is underway.

Today, I am worrying about Muslim women, while remembering the incidents from September when several of them were set on fire as they walked down Manhattan’s Fifth Avenue, and hearing of the two Muslim students attacked by Trump supporters within hours of his victory.

Today, I am worrying about Jewish people, having read about the Nazi-related Trump graffiti and swastikas sprayed on storefront windows in Philadelphia.

Today, I am worrying about my African American and Latino friends who are more afraid now, perhaps than ever before, fearing a Trump mandate that inspires and emboldens White supremacists. I'm sorry for the Black woman whose white SUV was spray painted with the words, Trump Black Bitch.

Today, I am worrying about parents who have disabled, chronically ill children like my son Calvin, and others who are at risk of losing their health insurance. I'm worried that if Trump repeals Obamacare, they'll be buried in mounting healthcare bills and the burdensome prospect of being denied insurance because of preexisting conditions.

Today, I am dreading a Trump cabinet and a Supreme Court stacked with conservative White, Christian men who will decide the fate of so many women, immigrants, Muslims, People of Color and other minorities.

But I've always believed that fear should never be cause for inaction nor a motivation for silence. So I'll continue my campaign for justice in the face of these bad mandates.

As for the man who assaulted me in San Francisco? When he tried to bolt, I grabbed him by the collar and belt, detaining him as he struggled to escape. He tore away from me leaving behind pieces of plaid cotton shirt and a corduroy belt loop in my fist. In my high-heeled boots and skirt, I ran after him, and with the help of witnesses, I captured the louse. As he and I stood there on the sidewalk, face to face while waiting for the cops to arrive, I shoved him hard in the chest each time he tried to flee my grip. “You messed with the wrong chick,” I said.

As for being a sore loser? As a serious competitive swimmer much of my life, I learned early on never to be one. Moreover, Calvin has taught me one of life's hardest lessons about loss; I allow myself the space to collapse and grieve and breathe. Then I get back on my feet, chin up, and go back to fighting as hard as hell no matter the hurdle or foe. And if I am fortunate to taste victory, I hope to always do it with humility and grace.

P.S. I already miss seeing Hillary's smiling face.

Photo by Michael Kolster

election reflections

Christy,

Not sure if you have gone to bed, but I am literally dying from the fear of Trump leadership in this country. My friends are in tears. My husband is dumbfounded.  On the flip side it looks like rec marijuana will become a reality in your state.  I hope this will help with the cost of treating your son.

—Maureen, Alaska

 
my daughter has to grow up in a world, and we all have to live in a world, where the president can openly admit to sexual assault and it is okay. Where the president can openly be a racist and it is okay. Where the president can openly mock someone for a physical disability and it is okay. And where he can call on foreigners to be rounded up and kicked out of the country. Where the president thinks I don't belong here because I am not a citizen. Where the president thinks my wife and daughter are not full humans, deserving of respect. Where the president can openly call for his opponent to be arrested, for journalists to be persecuted, and for the willful violation of national and international laws regarding the use of weapons of mass destruction.

—Greg, Maine


How is it that I am feeling LESS safe today than yesterday, as a Black woman in the US, dang ... and to my Muslim, Latino, Gay, and Native friends … have we not endured enough injustice in this country—now the racist, homophobic, islamophobic pussy grabber is winning?

—Nya, Indiana

 
I'm depressed in a way I don't recognize. I don't want tomorrow morning to come. I don't want to be a part of a country that would do this. I can't imagine this being my children's national identity. I feel so deeply betrayed—by my own naivety as much as anything else. 

—Joslyn, Massachusetts


My 15 year old son Oliver says, "I'm ok because I'm a white male, Mom. But what about you and Sophie and our black friends and Mirtha? What about the Earth?"
 
—Elizabeth, Los Angeles
 

Any Well Wishes of Congratulations from Christy Shake or is she a sore Loser?
 
—Frank, Happy Valley

 
Gonna do my evening meditations and offer praises to the ancestors. Tonight, I didn't shed a tear. Instead, tomorrow I wake up to be ever more on the lookout to stand with those against whom so much venom has been unleashed. What Trump has stirred was always there and it shall not die. A great challenge is before us: how to fight against Empire crushing people abroad and at home and yet fostering a compassion among regular folk to not dehumanize each other. Tightrope, here we come ... ancestors, be our guide!

—H Williams, Gettysburg

 
Idea: I am going to start campaigning for polygamy so I can offer all y'all Americans a sham marriage with Dutch passport.

—Jean Paul, Nederland

 
The personal impact of a Trump presidency. When the Affordable Health Care Act is repealed, and "pre-existing conditions" are no longer covered, my daughter, who is a Type 1 Diabetic, won't be covered. Her insulin is $800 dollars a pop and she quit her job to care for her very sick father. I have a recent history of breast cancer and won't be able to get coverage. My husband, who is fighting for his life with stomach cancer, will not be able to get supplemental coverage. I do not get subsidized coverage. And I work in a law partnership that does not provide health insurance. I pay the full price of health care coverage, but it won't do much practical good, when three quarters of my family will be left without coverage for life threatening diseases. That is just one way yesterday's vote will personally affect me and my family.
 
—Theresa, Washington

 
like legions of you, my whole life has been lived up and through the violence of the charismatic, transgressive father, literally and symbolically. i didn't survive all this way to succumb to fear and sorrow. i already know how to fight. so do you. we just got the world's biggest wake the fuck up call. answer.

. . .

do what you need to do. cry, throw up, rip up a phone book -- but today the revolution begins.

—Lidia, Oregon

 
How do we teach the children to treat others with respect, not treat girls according to their looks, value people who were born differently and that we are all the same color under our skin ... how can we teach this when our leader devalues these things publicly. I don't like politics, but can live with it. But, living without respect for others is going to hurt every single one of us.

—Deneen, Washington

 
I have read a few articles this morning, which I will not repost, that essentially blame this on Hillary for losing. They repeat the tired old idea that she is not inspirational, or that the Clinton name is exhausted. I think she would agree that she is a technocratic politician, not a charismatic one (in Weberian terms I mean). But I would just caution against sliding from that description to the idea that people don't find her inspirational. Some people find confidence and competence to be very fucking inspiring, especially in our elected officials. I disagree with many of her policy positions, and with her commitment to neoliberalism. I hate her husband for what he did to Haiti. But her husband is his own man. And neoliberalism is a global consensus. I just don't get the virulent hatred for her as a person because of her husband's record or because of a global political and economic ideology. Hillary has shown herself, for decades, to be a political par excellence. For some reason, in America, that is a bad thing. I would very much like the prevailing order of neoliberal capitalism to change. I had a lot of faith that Hillary would be savvy enough as a leader to see and feel the winds of change and to bend, even if too slowly for some of us, the world ever closer to the arc of justice. As a social scientist I appreciate nuance and context. But I really cannot help but see this outcome for what I feel it truly is. A majority of Americans, of all sorts, refuse to accept that a woman is equal to a man.

—Greg, Maine


Never have I felt so brown. Or disabled.

—Anonymous

don't go back

There are some people in this world who are pure souls. My sweet little boy Calvin is one of them. He affirms it with a sea of unconditional love, his lack of desire to hurt or conquer, his impartiality, and his indifference to material things—all qualities I believe can heal the world. At the same time he expresses a most admirable (though sometimes irksome), determination. And he is a boy who has a penchant to do what is right even when it is difficult.

Of late, Calvin has moved me to ponder this country, which our family is fortunate enough to call home. I feel grateful for the day that this nation of immigrants was founded. It was a landmark moment that represented many freedoms, a time that underscored the escape from religious persecution, from the iron hand of monarchies and the shackles of caste societies. But this utopian birth of a nation was bloodied by its slaughter of our indigenous people and the abominable institution of slavery that reigned for centuries in the name of profit, even in our forefather’s homes. It was a dark time when poor White men, women and Blacks were barred from the right to vote or own property, a time when good medical care and a decent education were reserved for the privileged few.

But thanks to the courage, suffering and tenacity of champions like Susan B. Anthony and Frederick Douglass, slavery was eventually abolished and Blacks and women won their right to vote. The Civil Rights Movement in this country worked to end segregation and oppressive Jim Crow laws, and the sexual revolution of the sixties and seventies promoted—among other things—birth control, thus improving the lives of millions of women and families. We have evolved into a country in which everyone can marry who they love, an African American can become president, and our disabled people have shed the weight of shame, where now only the ignorant few cast their ridicule and scornful glares.

I reflect on our history and marvel at how far we have come despite so much bloodshed, subjugation, cruelty, injustice, and suppression. We have reached a better place. But there is so much more to do, so many who still stand in the shadow of inequality, pressed under the thumb of those who would deny them the same freedoms that they themselves—who profess to promote liberty—enjoy. And there are those who would build walls and take away the precious freedoms and advances fought so hard to attain, and who mock us and who would gladly cast us aside like a bit of trash, or climb on our backs just to get to the top, never once stepping into our shoes.

And so I look back to see where we have come from, and to learn. But more so, I look forward to a society in which everyone is treated equally—for we were born as equals—one in which each of us is free to enjoy life and liberty, where condescending slurs, misogynous attitudes and biased policies against women, the LGBTQ community and people of color are eradicated, where our criminal justice system isn’t an ugly mirror of blatant racism, where the gap between the haves and the have-nots gets narrower not wider, where corporations are not considered people (people bleed), where the separation of church and state still abides, where everyone who wants to go to college can do so without getting sunk, where sick little kids like my Calvin are not at risk of losing or being denied health insurance. I dream of a homeland in which the value of justice and inclusiveness are a powerful and noble example to the world, not one that would promote bigotry, spread lies, and incite violence against those who are seen as other.

And so, with the pure spirit of my son Calvin in mind, I think to myself out loud:  

lead by example, move forward, embrace progress, keep on truckin’, stay the course, be kind to immigrants, revere women, honor the disabled, listen to and trust one another. And  keep looking back ... but please don’t take us there, because for most of us, it wasn't so great.

A suffrage parade in New York City in 1912. (Photo: Library of Congress [Public domain], via Wikimedia Commons)

mom

Mom would have turned eighty-seven today. I've missed her every day these past thirteen months since she died. I've missed her since Calvin was about two or three when she began forgetting that I have a son. But I'm grateful she met my boy and thankful that I have memories of them together. I used to cry into the phone expressing to her the grief I felt over the loss of having a severely disabled, chronically ill child. Her response to me was always the same. In her soft, loving voice, she'd say, "No one but you can know how hard it is." It made me think how difficult raising us six kids must have been, and I wonder who she told. I wonder who comforted her besides, perhaps, my father. My sense, my fear, is that she did it alone. That's how strong she was.

I think of her now as one of those twinkling starts out there, her silvery hair shining amid an infinite sky. Happy birthday, Mom. I'll love and miss you until the day I die.

trolls

The photograph featured a young white male with a shaved head, multiple piercings, twice-gauged ears, nostrils gauged larger than quarters, what looked like a gauged chin (how is that even possible?) and multiple tattoos adorning his face and neck.

“Describe him in one word,” the post read. Over twelve-hundred people responded to the troll's provocative post. These were some of their comments:

why?
awful
moron
wtf?
devil
yuk
jobless
gross
ugly
nuts
brain dead
dumbass
idiot
nasty
twat
circus freak
joke
dick

All but a few of the comments were disparaging and frankly made me sick. While I am not a fan of wild piercing and gauging body parts, I thought about my unusual twelve-year-old son Calvin who is non-verbal and somewhere on the autism spectrum, wears thick glasses, is still in diapers, walks awkwardly, makes odd noises, and drools, so I added my one-word comment to the list of deplorable ones: human. This boy with the tricked-up face, while he might in many ways seem other, is human and, thus, there is a decent chance that he is good.

The post arrived on the heels of an ACLU story about a Phoenix teacher, Ms. Myles, who emotionally abused and bullied one of her sixth graders, a Muslim immigrant from Somalia living here on a refugee visa. The story read:

Ms. Myles continued to give other students in class "downtime" to talk with each other, but would prohibit A.A. from talking during these times, often telling him to "shut up." Then, A.A. raised his hand in class to answer various questions but, as usual, was ignored by Ms. Myles. As he raised his hand again, Ms. Myles snapped at him, in front of the entire class, "All you Muslims think you are so smart." She then started ranting about Donald Trump, telling A.A., in front of the entire class, "I can't wait until Trump is elected. He's going to deport all you Muslims. Muslims shouldn't be given visas. They'll probably take away your visa and deport you. You're going to be the next terrorist, I bet."

My response was a mix of anger and despair. I read later that the child's classmates mimicked the teacher's anti-Muslim harassment.

Soon after, I read an article about a African American church in Mississippi that was torched and menacingly defaced with the words, Vote Trump.

During this year's presidential campaign, I’ve heard folks who criticize Islam for its treatment of women turn around and call women bitches, and worse, then tacitly endorse or shrug off Trump's admission of sexual assault and his ongoing loathsome behavior towards women. I've seen White high school athletes rally against their non-White opponents using racial slurs and hurtful posters. I've seen Trump supporters punch, spit on, shove and berate people of color, telling them to go back to where they came from. I've seen Hillary Clinton, President Obama and Black Americans hung from nooses in effigy.

Someone coined a name for these atrocious behaviors: The Trump Effect. I don't think these vile sentiments and actions are anything new, instead perhaps more of a throwback to a time when America wasn't so great, to a time before we'd evolved into a more perfect union (though we are far from perfect). Trump's caustic rhetoric has helped peel back a thin veneer, exposing the bigotry that still exists in the hearts and minds of some folks in this nation. He fans the flames of hate with his brazen contempt of other, his sanction of violence against the opposition, his broad assertions that certain immigrant groups are to be feared. Like Ms. Myles the sixth grade teacher, the ignorant are aping Trump's behavior.

Yet, for all his bluster, his promises ring hollow. He'll never deliver, even if he makes it to the Oval Office. He'll continue on as the self-serving, petulant, attention-starved child he is while letting the little guys flounder. He has excelled only in showing us exactly who he is: an arrogant, bullying, greedy, chauvinist who sexually assaults and verbally assails women, discriminates against Blacks, maligns Muslims and Mexicans, scorns war heroes and mocks people who are like my precious boy Calvin.

Yep, the tax-dodging loser with the bad comb-over is nothing more than your average troll.

Trump Effect: Inside the burned-out, vandalized African American church, Photo by Rogelio V. Solis/AP

on embracing

After Calvin's grand mal seizure yesterday morning (I guess I didn't cross my fingers hard enough) I spent most of the day in his embrace. All he wanted to do was to stay in bed with his arms around my neck. He must have had some sort of stomach bug because ... well, I'll spare you the gory details. Thankfully, though, he was able to keep his seizure medications down, something that when he is sick is always of grave concern to me.

The day had me thinking of how many hours I've spent simply embracing Calvin, as if I am still a lifeline for him as much as he is one for me. I spend a tremendous amount of time tethered to him since he doesn't walk well, doesn't follow instructions well and needs great assistance doing everything. I hesitate to think about the void Calvin would create if he were to disappear, and I wonder, if that were to ever happen, if I'd simply wither away without the life spring of his embrace.

Photos by Michael Kolster and Christy Shake