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