on sovereignty

the breakthrough from gray skies to blue doesn't always bring me pleasure. sometimes the shadows cast by an unfettered sun are far too hard-edged for me. i must squint and scowl, avert my gaze. glowing colors which are saturated on dewy mornings appear washed-out and tired at midday, as if an antique snapshot made them that way.

on days like this the events of the world, the nation, feel crushing: weak and deceitful leaders, starving, neglected children, abused and oppressed women, desperate, fearful migrants, mass shootings, suicides, overdoses, executions. i overheard the grocer's cashier say, "she had on a dress she had no business wearing." her words stung as if they were meant for me. i wanted to say something like, people can wear whatever the fuck they want, or, as my dad used to say jokingly, what's it to ya, cabbagehead?

weariness and worry weave themselves into my body and brain. i know it's the consequence of stress and sleep deprivation. almost nightly, i catch myself clenching my jaw or grinding my teeth. perhaps it's loneliness i feel in my bones, strolling around in the garden somewhat aimlessly. what am i searching for? i bend, crouch and stretch, snapping errant twigs, clipping others, forcing growth into otherwise gangly, rambling, branches. i thirst for this control of nature; i have none when it comes to my boy and the seizures he suffers so endlessly. i wish so much for freedom from this malady.

recent talk of a merciful god bugs me. i recall a friend thanking god for protecting her non-verbal, disabled child from nearly choking on a chunk of celery that had been lodged in the back of her mouth for hours. why hadn't god simply protected the girl from gagging on the celery in the first place? why hadn't god saved the child from suffering scores of seizures that rack her brain? no doubt countless pleas have been made to god—concerning war, famine, disease, blight, disaster, injustice. they go unanswered regularly. though the existence of a certain kind of sovereign universal force (Nature?) seems reasonable, it's the belief in a merciful god—and one who condemns and punishes—in this messed-up world that is so astonishing to me.

in gazing through the shrubs and trees, I consider calvin, my little guinea pig, who is surviving on one pharmaceutical drug and two cannabis oils for his epilepsy. one oil i make, the other i send for in the mail. every good month is flanked by awful ones. his seizures are reliable and often come in clusters, of late, at the very least weekly. i hear of others afflicted with this disease, some too poor to afford their therapies.

folks go on about their freedoms while being hamstrung by healthcare premiums, copays, costs and deductibles so excessive they risk bankruptcy. some must choose between food and insulin. greedy corporate bastards and their political pawns feed on people's fear and ignorance, twisting the notion of what it means to be free, keeping people sick and shackled, widening the divide between those who have (money, power, control) and those who don't and never will. no one should profit off of ailing bodies. that's not freedom. that's tyranny.

near the end of my musings, i glance outside again and then at a spoon that hours before had peanut butter on it. it sits on a mysteriously-gotten susan sontag book, patiently awaiting to be picked up. it could sit there forever, until it becomes part of the room's wallpaper—an antique snapshot. i sit here wondering, though not concerned, what life is all about, my motions and emotions so crisscrossed in my body's sovereign continent. yes, sovereign.

a birdsong sailing through the screen door breaks my melancholy. i hear the bus pull up with calvin. bathed in late-afternoon dappled shadows, the garden has softened. the breeze is cool and exhilarating. the sun on my back feels good.

rule number one: do not obey in advance

I'm away from home having traveled nine hours to attend a wedding. My time is not completely my own, which is why you have not heard from me. I should tell you that Calvin is doing okay and has had some of his best nights of sleep since adding a nighttime dose of Palmetto Harmony CBD oil last week.

When I woke up this morning while the others slept, I read my dear friend Elizabeth Aquino's blog, a moon worn as if it were a shell. She, like I, writes about her disabled child afflicted with severe epilepsy, intermingling her stories of despair, frustration, gratitude, perseverance with more than a smattering of the politics of social justice; she is a kindred spirit.

Her post is so powerful, expedient, and cogent I had to share it here:

Rule Number One: DO NOT OBEY IN ADVANCE
by Elizabeth Aquiino

Sophie got a new wheelchair yesterday, thanks to her private insurance which is governed by the Affordable Care Act's protection of pre-existing conditions and her qualification to receive Medi-Cal which helps to pay for any out-of-pocket expenses. I am filled with gratitude for these things and well aware of my immense privilege, particularly as these things are not afforded to everyone and are now under threat for everyone.

The week after Trump was inaugurated and became the POSPOTUS in 2017, my therapist (I know, LA, and all that stuff) gave me two pieces of paper stapled together, titled Twenty Lessons from the Twentieth Century.* Written by Tim Snyder, an American historian of Central and Eastern Europe and the Holocaust who is a professor at Yale, the list draws on the experience of those who lived before, during and after the rise of Fascism in Germany and Communism in the former Soviet Union. I think we're well past the rise part in Trump's America and into the fascist part, so I'm reviewing the lessons and was struck, especially this morning, by the first one:

Do Not Obey in Advance

Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.

Despite the ease of it (for those who are privileged like myself), caving to despair or cries of how fucked we all are, we just can't. I know that I have "obeyed in advance" many times during my life, have handed power or agency over to not just institutions but to people in my family and even people that I love. Part of that is due to deep cultural influences, to patriarchal systems, to my own apathy or cynicism. It's a slow process toward acknowledgement of that anticipatory obedience, even in my privilege, yet having a child with severe disabilities has pushed me along that path of self-awareness and agency a bit further. 

When I heard yesterday that Justice Kennedy was retiring, handing the POSPOTUS the chance to ensure a draconian legacy of conservatism on the Supreme Court, I did feel despair, particularly about the threat to women's reproductive rights and the Affordable Care Act's protection of those with pre-existing conditions. My despair shows itself in biting humor which isn't funny at all. I imagine Sophie driving a car, proving her "worth" in lieu of getting "free hand-outs" through Medi-Cal, yet unable to get insurance to pay for the drugs and treatment of her life long epilepsy. I imagine her getting raped by some free enterprise private contractor in an institution for the handicapped and not able to have an abortion because it will be illegal. I crack sick jokes because it helps me to cope and perhaps jerks people out of their malaise and into action. 

Here's the thing.  I am thinking that we're entirely not fucked, that we're actually in a fight and that we have to stay in it. We have to stay awake. We can't succumb to despair. We can't obey in advance.

It will be me, maybe, actually driving that car with Sophie in it and any woman or women who needs to go to a state that still guarantees their reproductive freedom.** Sophie is very quiet and capable of holding great secrets. I am very loud.

*  You can easily look up the lessons, but I typed them out on the blog HERE
**Here's a list of things you can do if or when Roe v Wade is overturned.

Photo by Elizabeth Aquino

changes

It couldn't have been clearer to me that Calvin would have a seizure by this morning. In his own way, he tells me. I just have to watch and listen. Yesterday, he showed nearly all of the usual, and some not-as-usual, harbingers: bloody nose, whininess, major finger snapping and other repetitive behaviors, pacing, warm hands, uber-rashy butt, agitation, restlessness, intensity, detachment.

At five a.m. it came. Perhaps the extra doses of concentrated THCA cannabis oil just past midnight and at three o'clock impeded its arrival. As I spooned with him after the seizure, I felt how calm his body was, noting the absence of what I call aftershocks—shivering and shudders which often occur in the wake of grand mal seizures. I had no doubt THCA had something to do with his serenity.

Mostly awake since three and therefore exhausted, I still had a hard time relaxing my mind. Lying there, again I considered the world. I feel it going through its own convulsions, having more than its share of anger, hatred and greed, its racists, abusers, tyrants and liars bent on destroying humanity at nearly any cost, lusting for power through intrigue, attempting to avoid capture. What drives these men to such extremes, these gun-toting terrorists, abusers, trolls and bots, these conspiracy theorists, these despots and deceitful oligarchs? Meanwhile, in my arms lies one of the purest souls on earth, a boy who inspires love and compassion, requires my mindfulness and who, though he tries my patience at times, makes me want to live simply and be a better person every day.

Yesterday, when reading about the Marjory Stoneman Douglas high school students traveling to the Florida state capital to express their desire for the legislature to pass stricter gun control laws, I thought about Calvin. I imagined him being crammed into a closet with twenty others his age, little room to breathe, waiting silently for ninety minutes until the shooter fled the scene. I imagined Calvin—if he were a typical kid—fearing for his life, texting us, being riddled with bullets or sobbing when finally set free. I imagine him, later, boarding a bus with his classmates to march on state capitals and Washington DC demanding changes to gun policy. He'd be that kid. He'd change the world. No doubt he has, in his own way, inspired such things in others and in me.

A former teacher—one who has never met Calvin nor could comprehend the depth of his disability, who had no children of his own much less a non-verbal, incontinent, uncoordinated, delayed, epileptic one—once asked me why I named my blog Calvin's Story, or rather, why I didn't write more often from my son's perspective since it bears his name. I recall being slightly irked and thinking, perhaps even saying to him, that Calvin informs my world, and since he lacks the ability to speak, I must lend my voice to tell his story—which, because we are so inextricably linked, is ours—the one he might have told if he had been born normal. In short, I have to dream. I revisit that question from time to time, checking in with myself to ensure I am doing justice to Calvin's unusual and complicated childhood experience, exploring notions of my own with regard to him hoping I can extract some meaning from it—which is not to say I am searching for answers as to why he was born so afflicted. (Shit just happens, with no inherent reason, no purpose. Prayers prove useless, the absence of God in schools a lame excuse for mass shootings; pedophile priests still lurk in churches.)

This morning, I considered our children's truths and stories as told by themselves and their parents when I heard a former GOP congressman expressing doubt that the teenagers organizing a nationwide rally against guns—thinking the students incapable because of their youth—are doing so of their own volition. Instead, he suggested that they are mere pawns of leftist organizations. Clearly the response was from someone too detached to understand young, informed, impassioned minds, or too partisan, ignorant or cowardly to think, appear or admit otherwise. His lame statement led me to recall the David Bowie lyric I read yesterday from his song Changes:

And these children that you spit on, as they try to change their worlds, are immune to your consultations, they're quite aware of what they're going through.

I went on to ponder the right-wing conspiracy theorists who've shamefully suggested that the Florida school shooting, along with the Sandy Hook massacre, was a government ruse and that the students are actors. I wonder what in the hell these losers, jerks and trolls want to do to the virtuousness of the world. I can only hope, and work, to squash them all and liberate the truth, and soon.

And so, as my son spasms, so does the world. But there are elixirs. There is cannabis to fight seizures, there are fathers to soothe and mothers to spoon, there are parents and educators teaching their kids honesty and virtue even in—and perhaps owing to—the absence of god in schools, because it is very simply the right thing to do. There is love to conquer hate, knowledge to erase ignorance, truth and fact to crush lies and rumors, compassion to smash fearmongers, misers and fools, virtue to rule over vice, and the voices, bodies and ballots of youth to enlighten, change and lead us, to liberate and save a convulsing world.

guts and gumption

Calvin had a grand mal at midnight, straddling day four and five since the last one. He fell asleep next to me after I gave him a dose of concentrated THCA tincture, woke back up at three o'clock repetitively humming, then wet himself and the bed and never went back to sleep. Instead, he kept sitting up, humming, and whacking his head on the padded side panel of his bed. Though we tried, Michael and I were so exhausted that we couldn't physically or emotionally manage his frenetic energy, so we bundled him up in his robe and secured him in his bed with his chew toys and Baby Mozart playing on CD.

Last year Calvin had an average of just under thirteen seizures per month, with 4.8 of those being grand mal and the remainder being complex partial seizures. In the two previous years he had slightly fewer seizures and an average of 4.25 grand mals per month, though on a much higher dose of his benzodiazepine, clobazam, aka Onfi.

This, our first month of what I was hoping would be a better year than 2017 on a variety of levels, Calvin has already suffered four grand mals and eight partial complex seizures. I can never be sure why one month is better or worse than another. I rack my brain and tweak his meds and personally diagnose his rashes and research their origins and investigate their treatments and rack my brain again and again for anything that might assuage the electrical storms that continue to invade his head.

For instance, I wonder if Calvin's bad month is due to a paradoxical effect of the slight increase in Keppra, or perhaps a previous decrease in CBD. I wonder if this last stretch of his benzodiazepine withdrawal is proving to be more problematic than I had expected. I wonder if Calvin has another overgrowth of yeast in his gut (perhaps the source of the stubborn yeast rash on his face recently) which is releasing toxins into his blood that can trigger seizures and bad behavior (his behavior lately—and coincidentally since an increase in Keppra—has been exasperating like the bad old days.) Or maybe the culprit of Calvin's regrettable stretch is plain old puberty.

My most recent thought is that I should test him for yeast and start him on a yeast eradication protocol and see what happens; in the past the treatment has correlated with fewer seizures and reduced hyperactivity. I am also planning to make my next batch of THCA cannabis oil twice as concentrated so that I can give Calvin some at night as opposed to the concentrated THCA tincture I made with a few milliliters of 190 proof organic cane alcohol added for more rapid absorption; perhaps even a tiny bit of alcohol is contributing to an inflammatory effect. Who knows, but I'm going to go with my gut.

If those remedies don't help, as soon as Calvin is completely off of his benzodiazepine late next month, I think I'll try to procure or make some CBDA oil as a replacement for his CBD; something inside tells me it could work better. And if all that doesn't lessen Calvin's seizures I may have to consider going back to pharmaceuticals, an idea that I loathe but one that I probably shouldn't completely dismiss.

To add insult to injury, all of this is happening while I am trying to make progress on my memoir, write the blog, walk the dog, clean the house (haha), advocate for racial and social justice, field one person's slightly deranged and ambiguous attempts at connecting with me, and cope with all of the bad news coming out of the White House and Capital Hill, not to mention lamenting daily reminders of how significantly delayed, disabled and ill my kid is.

I know that surviving and remaining somewhat healthy in our kind of situation requires a fair amount of gumption; I've got a few dear friends who are virtually in the same boat. But survival also means that I need to step back and breathe deeply, count my blessings and my child's good days rather than focus on his bad ones, nap when I am weary, eat better, get outside more, laugh off others' sour moods, insults, antics and badgering, and live happily in the moment, like Calvin—who better than anyone—teaches me to do.

Calvin and his teacher, Siobhan, inside a fish tank bubble the other day.

i have a dream

On this, Martin Luther King, Jr. Day, I have a dream—a dream of leaders who espouse decency, humanity, reason, love, kindness, honesty, integrity, compassion, wisdom, inclusiveness, justice and equality. I know plenty of these good people exist, and so I will meditate on them. With folks like Martin Luther King Jr. in mind, I will continue to champion the causes of equality, fraternity and charity. I will go down on one knee for justice. I will support those who personify the very best in us.

I, too, have a dream, and with legions of others, I'll work to make it come true in two-thousand eighteen.

(gun) senseless

senseless: no doubt, my disabled child and his missing white matter, his rampant seizures, his drug side effects, his suffering, the senseless loss of what might have been a normal life for us.

senseless, too: lost lives. murdered child. automatic fire. gunman punching out windows. shooting into crowds. bullets flying. innocents ravaged. ambulance rides. bloody emergency rooms. NRA sham. government bribes. impotent legislators. cowards. disingenuous, derelict representatives. greed. thirst for power. reckless defenses of our second amendment. motherless child. childless father. wifeless husband. widowed bride. hazardous propaganda. false freedoms. risky inaction. senseless weaponry fetishized. our first amendment rights defied.

Bang Bang (I cannot second your amendment) by Holly Ballard Martz

a more perfect union

This is America. The land of the free and the home of the brave, a nation in which we are all created equal.

And yet, not everyone (I think of my son Calvin) is born healthy. Not everyone is born into a hopeful situation. Not everyone is born affording protections for their health and well-being. Not everyone is born into a community with good schools. Not everyone is born into wealth. Not everyone is born in a city with safe drinking water. Not everyone is born above the floodplain.

This is America. A nation of immigrants. A land having been taken from its natives. A nation, in large part, built on the backs of slaves. And yet, apparent to its founders America, this grand design of liberty and justice for all, would continue to be a work in progress, an ongoing effort to form a more perfect union than it was when they penned the Constitution.

This past week I've been watching the Ken Burns and Lynn Novick documentary about the Vietnam War. It is brutal in its revelations. Some of the images have caused me to cover my eyes. Others, like when our troops advised the waterboarding of an elderly rice farmer, made my skin hot and prickly, seeing the man's elbows cinched tightly with twine, his bare feet kicking to break free from his oppressor's restraint while another slopped water across the gauze covering his face and mouth. I winced watching a throng of police with batons beating antiwar demonstrators, and a mob of National Guardsmen shooting into a crowd of students protesting the long and senseless war, killing four. In all, nearly sixty-thousand American men, mostly working-class Whites and minorities, many of them teenagers, were killed during the war along with two-million Vietnamese troops and innocent civilians.

I consider those valiant young protesters taking to the streets when, at the time in the late sixties, most of the nation still supported the war. Those pro-war Americans, who embraced the flabby platitude, "love it or leave it," didn't know Nixon was lying about the war's progress. Even congress was unaware he had attacked a site in Cambodia, hadn't known the treasonous lengths Nixon had taken by colluding with the South Vietnamese government to get elected.

The protesters were on the right side of history, attempting to right the grievous wrongs with the hope of making our nation better for everyone.

So, too, were the Suffragettes, the Labor Movement protesters, Muhammad Ali, Rosa Parks, Martin Luther King, Jr., the Freedom Riders, the Greensboro lunch-counter protesters, the Selma to Montgomery marchers, the Women's Liberation activists, Colin Kaepernick—and the disabled people in wheelchairs protesting the congressional GOP's most recent attempt at dismantling the ACA which would have endangered people like my son Calvin who suffer preexisting conditions.

Just after last year's presidential election, I had a dispute with someone over the Trump protesters. He had condemned the masses denouncing the shameful president-elect who had campaigned against Muslims, Mexicans and immigrants, who had maligned Blacks, disparaged and insulted women, and mocked the disabled. This person showed little interest in understanding the protesters' perspective. Instead, he spoke over me. Refusing to be intimidated into silence, I met his escalation until we were shouting over each other.

Months passed until we spoke again when I offered him an olive branch. Recently, he told me he had stopped watching football because of the "whiny athletes," who I assumed to be the players protesting racial injustices. I chose not to engage having previously witnessed on several occasions his limited capacity to listen, to be open to different perspectives, his feet cemented.

Then it occurred to me that maybe my opinions are cemented too. So I probed further, questioning my understanding of justice—the lack of which appears to spawn most protests—remembering a friend who had insisted that justice is a matter of opinion. But is it?

Last week, a friend on Facebook expressed her disdain for the Kaepernick effect, and what she saw as a disproportionate amount of media attention spent on the athletes' "disrespectful" protests rather than to the tragedy in Puerto Rico or the nuclear crisis with North Korea. My initial reaction was to concede that there might indeed be an imbalance.

But then I got to thinking about protest, remembering what I'd learned about the ones mounted against the Vietnam War. Nixon and his cronies, champions of the racist war on drugs, to gain political leverage, had been masterful at pitting mainstream Americans against righteous antiwar protesters. He and his veep had characterized the demonstrators—so many of them young and Black and Brown and poor, including dissenting veterans who had fought and returned home—as somehow unpatriotic. I'd seen similarities between Nixon and Trump. But in that moment, I also saw clear parallels between Trump's lax and meager response to the post-hurricane suffering in Puerto Rico and his contemptuous tweet storm chastising athletes who are exercising the very freedom our troops ostensibly fight for. Each of these responses reveals an apathy and contempt for Black and Brown lives, which is exactly what Colin Kaepernick and others who have joined him are protesting, not the flag or Anthem. They are seeking the same protections any of us would fight for; they are protesting the miserable treatment, abuse and killing of Black people in this nation. Their—our—protest is virtuous, meant to better this place we call home.

And, as I'm wont to do, my thoughts circle back to Calvin who, despite the fact that he was born with legions of disadvantages, soldiers on even in the face of continuing hardship and adversity. I sometimes think that his very public presence in a sometimes insular world, one which greatly misunderstands and often neglects people like him, is a march against the exclusion and abuse of other marginalized populations. A true American, my son, through and through. The best in every sense of the word, helping to make this place, this mixed-up nation, a more perfect union for every one of us to behold.

Photo by Mary Scarpone

larger than myself

It was an agonizing decision, but after resolving not to fly to DC for the Women’s March on Saturday, I finally felt at peace. Many dear friends and some amazing strangers, through their kind messages and words of support, helped me come to my conclusion. The morning of the march, however, I wept. I felt trapped in this little town, one which I haven’t been able to escape from for over two years. I mourned the loss of the chance to be a part of something larger than myself. Michael held me, which always makes me feel better. A few hours later, we packed up and drove south to Portland.

We parked in the sun about a block from Congress Avenue near the end of the protest route. It was a mild day for January in Maine, in the low forties with no wind. Bundled up in hats, scarves and gloves, the three of us, plus Nellie, picked a spot on the curb and watched the parade of demonstrators descend from Munjoy Hill, a handful of happy cops with their blue lights flashing in the fore.

Calvin was in a fine mood, and I wondered if he enjoyed the noisy crowd with their bright posters and chants of solidarity. For an hour and a half, a steady stream of people of all ages and walks of life, led by a young woman in a wheelchair, passed us by. We'd learn later there had been as many as ten-thousand marchers in our small city. An animated man with long grey hair appointed himself to direct traffic at the crossing. We saw dozens of friends who came up to us with hugs. It seemed everyone who passed looked at us standing with our drooling disabled kid biting the scruff of his jacket and going a little berserk at times. One woman holding a sign that read “Liberty and Justice for All” glanced down at Calvin, then smiled and tipped her head to me. I choked up on the spot at her validation of us. Michael’s eyes watered in the cold.

Nothing but waves of love and inclusiveness radiated from the peaceful crowd, and in scores of cities across the nation and in cities on six continents, millions of people marched to show their support of women, the Disabled, immigrants, Muslims, Black and Brown people, LGBTQ people, the underpaid and underserved. Some of my favorite signs read:

my rights are not up for grabs

respect existence or expect resistance

feminism is the radical notion that women are equal to men

i’m not a sign guy, but geez

leave it to the beavers

1968 is Calling. Don’t Answer

I would not want to be the guy who pissed off all these women

We are the 51%

Make America think again

Thankfully, there were few signs that referenced the man-child who took office last Friday after having issued a bleak and egocentric inaugural speech to a relatively modest-sized crowd so white I did not recognize it as wholly American. Our marches, in contrast, were beautifully diverse as America and about hope, love, support and compassion for each other, action and solidarity.

On social media the past week I fielded some questions about the marches. The queries, verbatim, were:

What do all the protesters (and we all know violence will erupt), expect to happen from their actions? Are they expecting Trump to quit? Do they think we all don't know by now their views? Why the gatherings to spew hatred? Wouldn't getting involved with local government be a more efficient use of time? And what did they accomplish?

I assertively addressed the questions—some of which had made me cringe because of the way they were worded. I was called smug and condescending. I was labeled a hopeless liberal. I had attempted to honestly answer the queries while respectfully challenging their assumptions. I had hoped to offer the insight they professed to be searching. I was met by some with scorn, which only served to strengthen my resolve.

Under a filtered sun, as the last marchers approached, my family joined the crowd as some dear friends pushed our empty stroller. Calvin, Michael and I marched a couple of blocks for women's rights and the rights of the most vulnerable in our nation. We marched for Calvin, because the current administration has appointed secretaries who would put in jeopardy Calvin's special education services and healthcare. We marched in solidarity with the majority of Americans who voted for inclusion, justice and equality, for bridges to be built, not walls. I smiled the entire time, even as I wept. My heart brimmed with the knowledge that no one can quell this massive, resistant, powerful, common voice against oppression, and the amazing sense of becoming a part of something larger than myself.

Photo by Connie Chiang

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

rally cry

It continues to be a huge undertaking, this pioneering of the right type of medical marijuana for Calvin and for kids like him who suffer from intractable epilepsy and live in Maine.

Nine months ago I knew little to nothing about this topic. Now I understand that we must procure and grow the right strains of cannabis high in cannabidiol (CBD) and low in tetrahydrocannabinol (THC) so as to avoid the psychoactive qualities in resulting tinctures. I've discovered that high CBD strains are not the only strains that have proven effective for treating medically refractory epilepsy, but that a tincture of THCa, in its acidic, non-psychoactive form, can also help. I have learned things about pest control and soils and fertilizers and growing conditions and clones and decarboxylation and liquid chromatography and tincturing. I've come to understand that it is illegal to transport plants, seeds, clones or tinctures across state lines. I've grieved the death of a handful of children with Dravet syndrome who died from prolonged seizures before they had a chance to get medical marijuana. I've heard that over 100 families have uprooted themselves and moved to Colorado to obtain the kind of medicinal cannabis, yet unavailable in Maine, that will likely lessen or stop their children's seizures, improve their overall well-being, even save their lives. I've read about the corrupt history of marijuana prohibition and have witnessed, first hand, the ignorance of some who would blindly prevent our children from obtaining what might be the only kind of medicine that can help them thrive.

We are so close to getting medical marijuana for Calvin that I can practically taste it. I have been given the recipes, our chosen dispensary has the appropriate strains growing, I'm holding my medical marijuana caregiver card and Calvin has his patient card. I am reading and writing and raring to go.

But just yesterday, I learned of a bill recently introduced to the Maine legislature that will prohibit the sale, use and possession of kief, the resinous substance extracted from the cannabis flower which is used to create various highly therapeutic tinctures that can be precisely measured, titrated and administered to our children without psychoactive side effects.

Calvin, who is now suffering weekly seizures and who has pretty much hit the ceiling with regard to the doses and side effects of his two antiepileptic pharmaceutical drugs, will likely benefit in myriad ways from tinctures of medicinal cannabis, medical marijuana. Calvin cannot smoke marijuana, nor would I want him to. Besides, heating the bud by smoking or cooking it is what renders it psychoactive, in effect turning non-psychoactive THCa into psychoactive THC. Ingesting it in its raw form would not allow for the consistency and minute titration that epilepsy patients require. The only option for Calvin, and for kids like him, is to put it into a tincture that is made with kief.

So, my new battle is to ensure that this bill does not pass, or if it does, the language concerning the banning of kief gets eliminated. I'm contacting our state representatives (you can too) and the folks at our Department of Health and Human Services, who are likely ignorant about the bill's restrictive and harmful impact on our sick children. I'll also be meeting with Senator Angus King (Independent, ME) on January 31st to see if we can rally his support on important federal legislation regarding medical marijuana.

Readers, this is a rally cry. What can you do?

http://www.mainelegislature.org/legis/bills/bills_126th/billtexts/HP124501.asp

moms de guerre

He's had them at dinnertime, in the bathtub and in the johnny-jump up. He's had them in the hospital, at school, at the doctor's office, on the highway, in the grocery store and on an airplane 30,000 miles high. He's had them while walking and crawling and napping and eating. He's had them all day long and into the night. He's had them on Christmas day and Thanksgiving and on my birthday and Michael's birthday and probably on his own birthday. For almost two years he had these seizures exclusively between 5:00 and 6:30 pm. Now he's having them at 8:30 p.m. and 3:30 a.m. and, since yesterday, upon waking at 6:00 a.m.

They're silent these days, Calvin's convulsions barely perceptible, just the subtle click and swallow of a gag followed by a few constricted gasps for air. During the first half of all of them he stops breathing and his lips, fingers and toes turn blue. They last upwards of three to five minutes. It's hard to tell when they are over. His eyes roll then lock and then search the big black nothingness of the seizure. He looks frightened, lost.

He's had hundreds of them, likely thousands. Perhaps his hysterical laughter is a seizure; they call those gelastic seizures. Maybe when he is poking his eye he is having a seizure, or when his hands and ears turn crimson red or when he whines or cries or falls off balance or shrieks or stares incessantly at his fingers. We don't know for sure.

In all he's tried ten antiepileptic drugs plus two rigorous dietary therapies; none has stopped them from coming. The fact that puberty is on its way in a few years scares me. I fear his seizures will burn out of control like a wildfire unless we dampen them down now. Statistically, the chance another pharmaceutical will stop his seizures has dwindled to almost nothing, which is why I am trying to go green, hoping medical marijuana, which has helped so many other children with uncontrolled epilepsy, will work for him. It is legal in the state of Maine. I've got my card and I'm this close to getting the right strain and/or tincture for my boy, the kind very low or absent of any psychoactive qualities. But when I do, and if it works, we'll be incarcerated in this state, unable to travel legally with Calvin and his medical marijuana tincture without fear of being arrested for possession.

So, a small group of moms in Maine, we dragon moms, we moms de guerre—a term my friend Charlie came up with—have a friend who started a petition to legalize marijuana, to take it off of the list of schedule 1 drugs so it can be researched and readily available to our children, some of who need it—literally—to save their lives because nothing else works. We want it to be researched, to be able to receive the appropriate strains and tinctures in the mail and not have to uproot our families and become refugees in states where it is legal.

Please help us by signing this petition, then share it for others to sign. We need 100,000 signatures by January 28th, 2014 for it to be considered. That's nearly 3,400 signatures for every day in this month. Please click below and sign up. You could be saving a child's life, and you never know if that child just might be yours.

We petition the Obama administration to end the prohibition of marijuana by removing it from the list of controlled substances in the Controlled Substances Act.

marijuana and the ailing child

Written by my friend Mary Pols and published in today's Maine Sunday Telegram

On a dark night in November, Meagan Patrick drove from her home in Acton with her husband, Ken, and their two children to a medicinal marijuana dispensary in Portland. Ken parked and went in, while Meagan and the kids waited in the car. “It was literally in a back alley,” said Meagan, a 31-year-old third-grade teacher.

Just a few months ago, this errand – shopping for medicinal marijuana to treat her baby daughter’s epilepsy – would have been unfathomable.

Ken came out empty-handed. There was plenty of medicinal marijuana available but, as they had suspected, not the kind they were seeking.

So this Monday, Meagan plans to board a flight to Colorado with 13-month-old Addelyn – “Addy” – to begin the process of becoming a resident there, far from family, far from Ken’s job and their woodsy home in southwestern Maine but close to what she believes may be her best hope for her child’s future.

About 100 families nationwide have already relocated to Colorado in order to obtain a strain of medical marijuana known as “Charlotte’s Web” that has been shown to be effective in treating children with epilepsy. Originally called “Hippie’s Disappointment” by its growers because of what it lacked in traditional potency, namely the THC (tetrahydrocannabinol) that gives users a psychoactive high, this strain of high CBD (cannabidiol) marijuana was renamed for a little girl named Charlotte Figi. Researchers at the University of Reading in England found evidence that cannabidiol, one of many components in the marijuana plant, can radically reduce the number of seizures in epilepsy patients; it reacts with receptors within the body and works as an anticonvulsant. That was borne out by Charlotte Figi’s case; at age 4 she was having 300 grand mal seizures a week and had run out of pharmaceutical options. In her first week on this cannabis-derived medicine she had just one seizure. Now 6, she is 99 percent seizure-free.

In Maine, medical marijuana is legal, even for minors, provided they pass a certification process with the Department of Health and Human Services’ licensing board. But the nearly two dozen Maine families who want to try it have run into numerous roadblocks.

The first is supply. Charlotte’s Web, developed by Colorado grower Josh Stanley and his five brothers – widely referred to as the Stanley brothers – is not technically available in Maine, as the Patricks found. But Charlotte’s Web rumors fly through this network of parents, many of whom originally connected on a private Facebook group called Maine Epilepsy Parents United.

Some say there’s something just like it, or close enough, or that a Maine grower might be secretly working from a clone of the Stanleys’ plants. Others whisper that someone in California might be willing to mail another high CBD-strain to Maine. Or that maybe the high-CBD strain isn’t needed at all, that maybe the plant in its raw form could yield a medicine just as helpful. In this world where mothers ruefully count up the number of pharmaceutical options that haven’t worked on their kids and dread the possible side effects of whatever comes next, nothing seems certain but the desire to give a natural product a try.

The second major obstacle is legality. It’s not as simple as going to Colorado to pick up some clones of the Stanleys’ plants and bring them back to grow in Maine.

Under federal law, marijuana is still illegal and classified as a Schedule 1 drug without any known medical benefits and with potential for addiction and abuse; it’s in the same category as heroin and LSD. Anyone who imports it across state lines risks being charged with drug trafficking.

Even if a Maine family can obtain something similar – growers in Maine are working on high-CBD, low-THC strains right now – many of these children regularly cross state lines for doctor’s appointments at Boston Children’s Hospital or Massachusetts General. Their medicine has to go with them. As Joan Smyrski of Maine’s Division of Licensing and Regulatory Services for medicinal marijuana points out, that’s a lawbreaker.

“It’s drug trafficking,” she said. Read More ...

photo by John Ewing/Staff Photographer

gleaning green

The speed at which information can be gleaned astounds me. A little over a year ago I first began comprehensive research into medical marijuana for the treatment of epilepsy. Subsequently, I asked Calvin’s neurologist whether she thought we should consider trying it for Calvin since ten antiepileptic drugs and two dietary treatments had failed him. She dismissed the idea citing that there was no hard and fast evidence proving its efficacy and that it remained illegal at the federal level. Less than six months later she was testifying before the Massachusetts Department of Public Health on the benefits of medical marijuana for treating medically refractory epilepsy.

Several months after our visit with her, we took Calvin to see a new neurologist in Maine. When I broached the subject of medicinal cannabis, he too dismissed the idea, citing similar reasons, that there were no double-blind placebo studies proving its efficacy. Cynically, he added that if he were to prescribe medical marijuana then everyone and their uncle would be coming in for a prescription. To promote the green treatment option, I even asked a dear friend, who was bringing her disabled son in to see the neurologist later that week, to press him on the idea as well.

Calvin’s pediatrician, on the other hand, was all ears. She and her nurse practitioner sifted through my copious emails on the subject of medicinal cannabis. I forwarded TED talks and weed documentaries and testimonial videos and newspaper articles and surveys, all of which showed compelling evidence that medical marijuana works to help control seizures in children with medically refractory epilepsy while causing little to no side effects besides, perhaps, drowsiness. These anecdotes also described improvements, not only in seizure frequency and severity, but in behavior, appetite, focus, clarity, sleep and coordination. I hooked up Calvin’s pediatrician with a local DO who regularly prescribes medical marijuana, and who gladly imparted his knowledge. I got Josh Stanley’s email, the man behind the successful strain of high CBD (cannabidiol) cannabis, Charlotte’s Web, named after the child who has had near miraculous results from its use, and I gave it to Calvin’s doctor. The two of them corresponded. She spoke with Calvin’s neurologist on several occasions hoping to persuade him to endorse the treatment for Calvin. He’d since received Calvin's former neurologist's testimony on the subject and he decided to sign a letter of recommendation for our son.

During the next several months and into autumn, I read and researched and networked online trying to find a high CBD strain of medical marijuana in Maine or in a neighboring state. A friend recommended a local organic grower willing to grow and tincture for us. I’ve spoken with dispensaries and doctors and growers and caregivers. In the past couple of weeks I’ve learned that a non-reactive (non-psychoactive) medicinal cannabis tincture rich in CBD but not necessarily low in THCa (preserved in its acid form by not heating) can be beneficial to patients with epilepsy. I’ve connected with these compassionate caregivers and have exchanged emails and phone calls hoping to understand their process of tincturing, which according to them renders effective results for patients with medically refractory epilepsy while—not unlike the Charlotte's Web growers purport—claiming to be non-psychoactive. I introduced our potential grower with the experts in this particular field of tincturing, hoping that they can speak to each other this week and perhaps get the flower into tincturing very soon since the strain, one called Cannatonic, is ripe for harvest at our grower's location.

For now, I am still waiting for my caregiver license and Calvin’s patient card to come back in the mail from DHHS. Hopefully, I’ll be visiting the grower to see his operation soon. Local labs where the strains and tinctures can be tested for content will soon be up and running and I am expecting to see some sort of breakdown of possible costs from the grower when I speak to him next.

All of this has been a big undertaking, sprinkled with thousands of Facebook posts from anxious parents in similar situations thirsting for information, an equal number of comments advising the best methods, time spent meeting with other moms and spreading the word, interviews with journalists and photo ops not to mention writing the blog and the day-to-day care of a child with a chronic illness who can’t do anything for himself.

It all reminds me of a blog post I saw recently, discussing the question that stay-at-home moms often get from other women which is, "What do you Do all day long?" For now, I am gleaning green, sisters, gleaning green.

photo by Michael Kolster

ass-kickers

Today I’m wearing my ass-kickers. Lucretia gave them to me. They’re brown leather, pointy-as-hell and studded, in a Goth sort of way, with crosses every which way having absolutely nothing to do with religion, unless there’s a religion for irreverent, foul-mouthed dragon moms who challenge the status quo, who write their president telling him about their pursuit of an illegal substance (medical marijuana) to give to their seizure-racked child, who aim to eradicate the evils of ignorance, greed, the lust for power and who simply want to make things right in the world. As you can see, I've put them to good use.

That’s right. I’m setting out to kick some major butt today with a handful of other dragon moms who have children with medically refractory epilepsy, kids who, despite being loaded full of powerful antiepileptic drugs, continue to suffer regular seizures that disrupt their development and their ability to live life feeling good and moving forward. We are meeting at an undisclosed location to talk about medicinal cannabis: medical marijuana. It is legal in our state, Maine, and approved for use to treat epilepsy. What seems to elude us thus far, however, are the following: 1) the right strain of cannabis high in cannabidiol (CBD) and low in tetrahydrocannabinol (TCH) so as to avoid the psychoactive effects; 2) accessible, trustworthy labs to test the strains for toxins and ratios; 3) laws that don’t limit the amount of medical marijuana we can possess for our sick kids; 4) laws that don’t inhibit our ability to travel out of state with our children and their meds without risk of arrest for drug trafficking; 5) understanding whether a strain high in CBD and low in THC is necessary (some argue that the non-active form of the plant with its CBDa and THCa—both in their acid form having not been heated during processing—is as safe and effective, if not more so than the active form); 6) understanding what dosing is appropriate for our children; 7) whether to grow and tincture the cannabis ourselves or whether to purchase it from another licensed caregiver (grower) or dispensary.

The fact that the FDA has classified cannabis as a schedule 1 drug (including its CBD, which is non-psychoactive) and therefore illegal at the federal level, has stymied decades of research that could have proved priceless for the use of medical marijuana to treat pediatric medically refractory epilepsy, the worst form of epilepsy due to its heinous impact on development, its path through the land mines of pharmaceuticals and their heinous side effects and its ability to kill our children. It sickens me that cannabis, with its perfect score of ZERO known deaths, has been so maligned while pharmaceuticals—legal, readily available, easily obtainable and covered by health insurance—cause tens of thousands of deaths each year.

So, watch out. Don’t mess with this chick. I’ve pulled on my ass-kickers and if you really want to get in the way of me helping—healing—my child, I suggest that you bend over.

puff of smoke

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

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

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

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

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

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

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

Internet image

conviction

If you hear a voice within you say, "you cannot paint," then by all means paint, and that voice will be silenced.

—Vincent Van Gogh

Vincent Van Gogh, (1853 - 1890)