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

8.30.2016

a good thing i did

If not for my son’s half-dozen ridiculously manic frenzies, the windy drive north was uneventful. Rather than face each of his outbursts with frustration and impatience, which my sleep-deprived self is often prone to do, I resorted to embracing and kissing him instead.

It was a good thing that I did.

Our day at the fair was a decent one, not that Calvin pet the animals or giggled at the goat’s bleat or marveled at the midway or ate cotton candy from a paper stick; he did none of those things. But he did walk well, a bit, and seemed content in the borrowed stroller, and ate his cut-up bites of lunch and took his meds. Above us, low clouds at times obscured a harsh sun, and gusts of wind cooled our necks and kicked up dust at our feet.

The past eight days—besides a steady increase in eye-poking and these brief, hysterical spells—have been good ones for my son; he's been happy, content, had mostly restful nights and has been walking stronger on his previously-broken foot. I wonder if this somewhat calm, seizure-free stretch is because we briefly paused the taper in his benzodiazepine.

At the fair, while I gave Calvin his noontime meds, chasing each pill with a sip of juice, his eyes rolled back and fluttered several times in what looked like some sort of tiny seizures, perhaps the petit mal type. And on the way back to the car, Calvin did what I call his zombie walk, cooperatively and quietly strolling along in his dad's hand with a pale, blank expression on his face. I remarked to Michael that I’d seen this kind of thing the day before grand mal seizures.

At two-thirty a.m. the seizure hit, too early to give Calvin his morning dose of benzo to head off a subsequent fit, so we gave him the Diastat—rectal Valium—and watched each spasm slowly subside, watched our boy finally catch his breath. Fearing he’d expire in the night, I crawled in with him, though not knowing what I’d do if his breathing stopped or if I’d even wake up if it did.

For an hour I laid awake, eyes closed, while Calvin slept, my mind wandering. I thought of the college kids returning to town, their voices echoing happily down our street. I recalled our recent dinner with Henry and Hector, Michael’s former students whom I've grown quite fond of, and the bottle of bourbon they brought us as a gift. I wondered how Beth, Calvin’s former nurse, is doing in St. Thomas. I worried about Calvin entering Jr. High. I relived the day’s phone conversations with my siblings, thought about the tear running down my cheek while missing Mom, missing life before Calvin, missing sleep. I lamented things like the dying shrub, these weeks without rain, the smug, so-called Christian meme posted on a friend’s social media page asserting that people like me, good folks who don't believe in the god of Scripture, are doomed to eternal damnation. I bristled at the cad named Trump and all that he stands for, grieved the injustices in this nation—misogyny, bigotry, classism, racism. I mourned my losses and those of struggling families fleeing war torn places, and those exposed to earthquakes and viruses, heat waves and floods.

Finally, I drifted off to sleep and dreamt of my childhood friend, Gary, who in my dream was riding a bus with me when a detached door flew off and struck him hard in the head. He started to bleed and seize. I woke in a distressed state, my diminutive tween slowly rousing beside me in the bed, and I embraced him and kissed him.

It was a good thing I did.

Photo by Michael Kolster