9.28.2016

down on one knee

My son Calvin—for all intents and purposes—does not have a voice. While he does cry when hurt, grouses in protest, and giggles when he’s feeling good, he cannot use words to convey frustration that he can’t do what other kids can, or to express sadness that he can’t call his peers friends, or to tell me if someone is mocking his otherness. To be honest, I’m not convinced Calvin is cognizant of these kinds of things, but perhaps it is better to assume that he is.

As his closest comrade, I am also his voice. I advocate for his inclusion, fight for his right to live with the fewest hindrances, champion his empowerment, and defend him by denouncing those who are cruel. Understanding Calvin’s inability to be heard causes me to reflect deeply on others whose voices often get stifled—women, immigrants, the poor, and people of color, to name a few.

The rash of violence against African Americans by police this past week—these past several months, years, decades—is so disturbing as to bring me to tears. I read of these men—fathers, brothers, husbands—see their hands raised, see them falter, see them bleed out on the street. As much as a White woman can, I understand their fear and sense of powerlessness against a nation wrongly terrified and neglectful of them. I hear their wives and mothers plead, see the children they’ve left behind tremble and weep.

And then there are the children. I see video of a teenage boy manhandled and cuffed by police simply for riding his bicycle on the sidewalk. I see video of a fifteen-year-old girl being roughed up, cuffed, and pepper sprayed for defying what seems to me like wrongful capture. I see video of a sixteen-year-old boy physically assaulted and brought to tears for nothing more than jaywalking. I see twelve-year-old Tamir Rice shot, in the blink of an eye, his sister tackled and handcuffed while trying to reach his dying side.

In a recent conversation about Colin Kaepernick’s renouncing of the National Anthem—the athlete’s decision not to stand in honor, but instead go down on one knee—someone close to me voiced disapproval, saying it wasn’t the appropriate time or place for protest. I asked if he knew of the anthem’s third stanza, a verse celebrating the historical torment and murder of Blacks, as written by the notoriously racist lyricist, Francis Scott Key; he didn’t. Most of us didn't. I wondered if he felt as deeply aggrieved by the rash of police violence against African Americans, which Kaepernick is condemning, as he did by the athlete's protest itself.

The morning after that discussion, Calvin suffered a grand mal seizure while asleep. As he shivered in the fit’s wake, I laid in bed with him, my hand over his heart. There, in the dark, I replayed the conversation, a stream of questions swirling in my head:

is it reasonable for the privileged white to dictate how, where and when an oppressed people protest their plight? what informs white opinion on these black matters? why do so many white folks feel compelled to state the obvious, that all lives matter, in response to the more apt notion of our times—that black lives matter. why aren’t more white people incensed when police pepper spray, mob, hurt and murder unarmed black men, women and children. what makes so many white folks intent on denying the narrative of our black brethren? what makes someone so blind to a plight which we whites set in motion? why is it so difficult to validate our fellow americans’ fight for justice? what pittance must we surrender to give other folks the benefit of doubt? what do we have to lose (we have everything to gain) by showing solidarity with people who suffer inequity every day of their lives?

Last week I read about two White men who, rather than being shot, had their guns wrestled away by the cops. I remembered when a White mass murderer of nine Black churchgoers was given a fast food burger on his way to the police station. I remember when a White Stanford swimmer rapist was allowed to serve only half of his pathetically short sentence. I’ve read of so many White lives that were valued enough to be spared. But Black lives? They don’t appear to matter.

To be White in this nation is to act with impunity. And yet, so many White people are blind to their privilege, and to the fear and uncertainty that Black people—mothers, fathers, brothers, sisters, children, wives, husbands—face on a daily basis because of their skin color.

Benjamin Franklin once said, “Justice will not be served until those who are unaffected are as outraged as those who are.”

And so when I think of Colin Kaepernick down on one knee protesting the violence, murder, abuse and oppression of Black people in this nation, I think of all of my many beloved Black friends. I think of Calvin, who has no voice, who often struggles against the elements and the force of gravity, who needs allies who can help lift him up and embrace him when he is hurting. No one can understand his challenges except those who know him and listen to what he is trying so hard to express.

And so I choose to amplify the voices who speak the truth of justice, whose messages are stifled and, because of outrage and hope for a better nation, in solidarity against the wrongs of a country I'll gladly go down on one knee.

Photo by Michael Kolster

9.27.2016

day four

Though it was only day three since Calvin's last seizure, yesterday's journal entry was marked with stars indicating harbingers of an imminent one. It read:

Slept well. repositioned x 1 woke 5:45
not himself. *not walking well. extra keppra
because weird eyes. seems like needs to poop.
*very whiny almost crying *banging his head
against mine = iburpofen 6:45 extra THCA
back to bed @ 7:15 better by 8:00 or so
SENT to school. brought home @ noon due to behavior
not sitting in seat @ school, head down
*hands on ears!!! *noodly *dropping down
*not eating *or drinking *WIRED @ 2:00 TYLENOL 2:00
*crab claw fingering *rashy chin SUSPECT A.M. SEIZURE
extra THCA @ bed asleep immed
around 9 - 10:00, 4 or 5 weird gasps as if
suffocating or choking (but asleep)???

This morning, our boy awoke restlessly at two-thirty, then wet his bed. After we changed his diaper he was still unable to calm, so Michael crawled in next to him and held him. Calvin wrapped his arms around his daddy's neck. At five o'clock Michael called to me in the next room.

"There's something going on here," he said, explaining Calvin's strong, rapid heartbeat.

I jumped out of bed, looked at the clock and decided I'd give Calvin his morning dose of clobazam, hoping to stave off a fit. I straddled them both in order to syringe the sweet, milky liquid into Calvin's mouth just as his lips began turning a sickening tint; the grand mal seizure had gotten its grip.

Michael held him as he convulsed, keeping Calvin's head turned to the side to avoid aspirating on spittle or the liquid med. After two minutes the spasms began to subside, replaced with a typical catatonic gaze, then an hour or so of more rapid heartbeat, one hundred beats per minute.

Calvin is still not himself; perhaps he is getting sick. But the extra THCA cannabis oil I gave him—that I now always give him in the wake of these grand mal events—seems to keep the partial seizures pretty much in check.

So we'll spend this rainy day indoors, and hopefully get some much needed rest.

9.22.2016

equinox

Our marriage on the autumnal equinox fourteen years ago was not random. We figured it was the perfect gesture to celebrate the parity we feel as partners, the fact that we each contribute the same energy to living life, the same enthusiasm to evolve and grow, the same drive to reach our potentials, and the same passion given to everything that is meaningful to us.

Although we have had to resort to pretty traditional roles in our marriage (except that Michael does all of the cooking) mostly due to logistics over caring for Calvin, we are still committed to sharing the load as best we can, still committed to supporting each others' endeavors.

And when things get out of whack and we stumble into cranky impatience, ugliness, derision, we rely on one thing that Calvin has helped us master, something that seems to be one of the great equalizers: forgiveness.

Photo by Michael Kolster

9.20.2016

time to fight

When I took Nellie out on the leash the other night, I heard the wind rushing through the trees, a hushing of Mother Nature swaying white pines, ruffling oak and maple leaves beginning to tinge orange with the coming of autumn. Weighing in at seventy pounds, Nellie’s commanding presence makes me feel safer when walking in the dark. No one would deny her might. Regardless, I am always mindful of my vulnerability, even in this small town, telling myself: stand erect; walk with purpose; be alert; avoid the shadows, know when and how to fight.

I’m aware of these things because, as a woman, I’ve been shaped by living in a patriarchal, unjust, often misogynistic world. I will never forget the times when, as a girl, I answered the phone only to hear some creep panting on the other end. Or the afternoon in my early teens when an older punk—also a stranger—aimed to kiss me, then whipped out his junk and tried to wrench my arm into touching it. Or the countless times I’ve been catcalled by random men passing in cars or by groups of them lunching on a curb. And how can I forget the pervert who rushed up and hoisted my skirt above my waist? Or the passerby who grabbed my crotch? Or the boyfriends who tried to go too far, even though I’d made my limits clear?

In my defense, I've brushed off, sucker punched, outsmarted, taken on, chased down, torn into, fought against and rebuffed those who may otherwise have done me harm.

As a woman, these kinds of vile offenses are common. And then there are the more subtle transgressions. I remember feeling the resentment from some of my male peers, and even from a few macho fathers, when I became a winning swim coach of a once-losing team in a summer league coached mostly by men. I’ve been underestimated simply because of my sex. I was passed up for a design promotion when my male boss hired a man with exactly zero experience in the industry. I’ve been condescended to by men, knowing without a doubt I’d never have been spoken to so patronizingly if I were one of them. I’ve gotten the eye-roll, the long sigh, the rude interruption, the scornful huff, the abusive slurs, the ridicule and belittlement when discussing equality, female prowess, sexism, and when challenging sexist “norms.”

I resent the brazen objectification of women in advertising and film, the banning of burkinis and—opposite side of the coin—the required minimum measurements of women’s Olympic volleyball bikinis (yes, this is fact). I see men in power exerting control over women’s lives, over our reproductive rights, our access to birth control, our access to health care. I see school dress codes shaming girls, guilting them for distracting boys, in turn prizing boys’ education over that of girls while harming girls' self esteem.

As a woman, I’ve been scorned for being too emotional, too serious, too sensitive, too assertive, too rowdy, and then, when confronting my accusers, I see the backpedaling and the gutless excuse that it was all just meant as a joke. I hear folks accuse women of being shrill, while criticizing their attire and their hair and their looks and their age and their weight instead of noting their brains and skill, and accusing women of lacking stamina when women are proven to have more. I hear of policies written by men taxing women’s hygiene products, of businesses and individuals charging women more than men for identical merchandise and services. I see a nation paying women less for the same work, barring women from male-dominated fields, from promotions and from positions of authority. I see Hollywood rebuff scripts dominated by women, see them dismiss films written and directed by us. I see predominantly female industries being lead mostly by men. I see a congress and a judicial system sorely lacking in female representation. I see nearly three-hundred years of white male presidents of these great United States. And yet we make up over half of the population.

I wish I’d had a child with whom I could teach to value women and girls, to uplift them, to advocate for them. Had Calvin not been born missing some of the white matter in his brain, had he not been living with epilepsy and been prescribed so many drugs, he might have been that child. As it is, however, Calvin doesn’t appear to discriminate, so perhaps my wish came true.

As a woman, I’ve generally had to be better at things to gain the same respect and rewards as men. As the fastest sprinter on a men’s water polo team, I was usually chosen for—and won—the face-off in games. And though I wasn't the best passer or shooter on the team, thankfully, my fellow teammates never made me feel inadequate or marginalized; those men had allowed themselves to evolve.

I’ve heard it said that if we want our society, our policies, to reflect our values, we have to elect people who reflect us, who literally look like we do. Now is the time for a paradigm shift. It’s time to walk with purpose, to be alert, to avoid the shadows of a less enlightened time.

It’s time to fight—for us. It's time to vote for her.

Unknown

9.16.2016

good news and bad

I've got good news and bad.

Inevitable as it seems, the bad news is that Calvin had a grand mal seizure yesterday morning. The good news is that he only had one, we didn't have to use rectal Valium, he hasn't had any partials in its wake, and he went ten days without any obvious seizures, even in the face of his most recent benzodiazepine wean. This last morsel is really good news considering the step down he just took was twice as big of a decrease as we've been doing for months. Having said that, the decrease is still tiny—only about eight percent of his current dose, or just 0.25 mgs divided into two doses. We decided to try a larger decrease in exchange for a longer pause between titrations, thinking it might give Calvin more time for his brain and body to adjust to less medicine. It also gives my brain a break from obsessing about the next wean since it isn't scheduled until next month. If we can remain at this new rate—which is totally unclear and depends upon how he responds—Calvin will be completely off of his clobazam by October 2017. At that point, his wean will have lasted three-and-a-half years.

Sigh.

Due to the nature of benzodiazepines and their withdrawal, we can expect to see withdrawal symptoms linger, possibly for months, after Calvin's final dose. We hope that none of them will be permanent. We hope, too, that Calvin's seizures will level off or possibly even decrease.

Having already taken our son off of over ninety percent of his benzodiazepine, I have begun seeing a better Calvin emerge. I see him drool less, walk steadier and, generally, sleep better. He is far calmer than he was even six months ago. He does continue to have sporadic manic and hysterical episodes, but we hope that these will subside with time as we believe some of them might be connected to some sort of gut pain or discomfort which can be brought on, or exacerbated, by benzodiazepines and their withdrawal.

We continue to give Calvin Keppra and a homemade THCA cannabis oil, made with flower from our amazing local dispensary, Remedy Compassion Center, plus a CBD cannabis oil called Haleigh's Hope, which appears to have helped numerous children battle their seizures, as evidenced by scores of parent testimonials on social media. We believe the Haleigh's Hope, in concert with the THCA oil, has helped Calvin withstand a protracted benzodiazepine withdrawal, during puberty no less.

The good news, too, is that today Calvin is back in school again having had no apparent partial seizures after the grand mal. His foot is healing nicely after having broken it this summer. Beth, his longtime nurse, is back in town for a few weeks and will be helping us out a bit. Autumn is in the air and from what I can tell, the fall foliage is going to be electric this year. And, on the equinox Michael and I celebrate fourteen years of marriage, to which he'll jest, "Seems like so much longer."

So I guess, at least for now, most of the news is good.

9.12.2016

upside down

Life has been a little crazy of late what with Calvin entering junior high school. His first day there I was a wreck, and when I arrived at the classroom, I needed hugs from women I barely know, aides with whom I spent a dozen hours last week showing how best to keep Calvin safe and well at school. I trained them how to feed him, toilet him, walk with him safely and how best to determine if he is headed for a seizure.

So, now that he is back in school, I have some space to regain my bearings without my little ball and chain. But I'm dizzy with all I feel I need to accomplish, which I've put on hold for several months—writing, mostly. My world feels upside down. So today, after a much needed drenching yesterday, I'll push my shovel into the damp earth, dig up a few plants, move some, gift others, prune some dead limbs, take Nellie for a nice long walk at the fields, and finish making my next batch of cannabis oil, all before Calvin comes home from school.

Photo by Emma Raynes

9.05.2016

fist of lightning

Lying on an Asian beach, a battery of black clouds crouching overhead, I glimpse a fist of lightning punching the horizon. It’s coming, the deluge, wind and sea spray brushing my cheeks. We know we can’t escape, he and I, the older brother of the youth I love. In his embrace, his moonface aglow, he leans in and kisses me. And I let him. And it feels right, feels good to be loved, yet it leaves me yearning for the younger in the pair of these doting ebony-haired boys, the one who stayed at home.

When the torrent comes, my companion and I duck into a nearby row of covered shops, their plywood walls tacked with trinkets, keepsakes, tinctures. In an instant, rain thunders down on corrugated metal roofs strung with plastic lights and paper lanterns sent dancing in the gale. My head throbs, so I scan the shops looking for something to dull the pain which skulks behind the sockets of my eyes. As the storm takes hold, midnight beachcombers scramble to find refuge, elbowing their way between us, wet trenches rubbing our faces, dank bodies breaking our fragile chain. And then I lose him, his hand snatched from mine in the crowd, his jet hair melting into a rolling black sea of crowns.

In the midst of my dream I'm slapped awake by Calvin’s jarring seizure scream, which sounds as if the fit is strangling the life out of him. I bolt to his room, peel back his bed’s safety netting, unlatch and drop its heavy panel. It’s only day two since the last big fist of lightning struck his brain—a smattering of smaller ones in-between—so I crack open a vial of rectal Valium and inject the mind-numbing gel to calm the storm, to break the chain.

As the spasms wane, I kiss my boy's neck and face. The dull ache in my head, like the thunderbolt is real, not dream. I throw back a couple of aspirin and climb in with my son. I rest my hand on his chest to feel its shallow rise and fall and, sometimes, feel its pause. When the clock strikes five, still dark outside, I think about the row of curio shops lit up in the night, and I wonder about the handsome Asian boys I dreamt about, and I wish I could unearth some magical potion that could help me harness the fists of lightning that plague our nights and raid my dreams.

Photographer unknown

9.03.2016

a gentle spirit

A gentle spirit has come into my life
To make me see things I did not want to see,
To make me feel things I did not want to feel,
To teach me things I did not want to learn.

This gentle spirit has hurricane force
That picks me up, turns me this way and that,
And puts me down softly in a new place,
Always a new place.
I cannot return to the safe warmth I once knew,
It is gone forever.

Because of this fragile, gentle spirit,
Joy and sorrow have become intertwined
In a fiber of life that few can comprehend.
Because of this sweet, gentle spirit,
I can appreciate what is often assumed.

— Jan King 

Photo by Bebe Logan