12.14.2017

twenty-six: remembering sandy hook

Stepping
into a seaside childhood morning
—only colder—
Wind whipping,
Moist and grey and brisk,
Rudy by my side.

Muddy
gravel underfoot,
Bits of sandy ice. A soggy cigarette butt.
The chapel bell begins to ring.
I stop to listen,
and count.

Twenty-six.
My head hangs low
and sorry,
Straining to hear each faint toll
amid the hiss of traffic
rushing by.

The fields,
A semi-frozen marshland.
My ribs lace up,
Wind whisks away each breath,
I begin to sob into shallow
glass puddles.

A sudden squall
evokes a school of hushing voices.
The tops of watchful trees
Standing tall and firm,
yet swaying
Nonetheless.

Silent forest.
Distant barking dogs.
A murder of crows looks on.
Thwap, thwap, these rubber boots against
Bare calves
Sting.

The skies
are silver, lead and low.
Shivering limbs set free cool droplets
like tears upon my face,
One for each child lost we must remember.
 Twenty-six.

In loving memory of the Sandy Hook Elementary School shooting victims. 

12.10.2017

kids

Just as the season's first heavy snowfall was putting down its inches, a dozen or more of my husband's college photography students crowded into Calvin's room. They'd come over for dinner after their last gathering of the semester to eat shepherd's pies Michael had prepared earlier that afternoon. As they filed in, I introduced myself, trying my best to remember their names as I did. One of the kids (I call them kids though they are really young adults) asked if Calvin was still awake. I told him yes, and invited him and any others who might like to meet their professor's son to come upstairs before I gave Calvin his nighttime meds and tucked him in.

To my surprise, the entire group followed me up and into Calvin's room where my boy was laying on his back, safely secured under the netted canopy of his bed, chewing on a sock and playing with his toes. When I unhooked and threw back the netting, he sat up then knelt to help me lift him out and onto the changing table. I told him that some friends had come to greet him, then put on his glasses so he might better see them.

"Hi Calvin!" a few of them said. I took Calvin's hand and helped him wave back at them.

One of the students told me that they'd seen photographs of Calvin that Michael had taken, and that he had also read my blog. All of them were sweet to my boy and seemingly comfortable in the presence of our peculiar kid who, unless one is within arm's reach of him, will not acknowledge their existence.

When the gang retreated, I changed Calvin's diaper, tossed him into bed and kissed him goodnight. He went right to sleep and didn't make a peep all evening.

Downstairs, the kids filled their bellies with curried shepherd's pie for eighteen, salad, and brownies a la mode. They finished with a Yankee swap of their photos, which I thought were all quite good.

By evening's end I had learned all of their names—Niles, Nye, Vin, Amanda, Angela, Neoma, Devin, Enrique, Brie, Justin, Diego, Harry, Sarah, Jack, Clare, Evelyn and Grady.

Having the kids over, something Michael does with both of his classes at the end of every semester, is often bittersweet depending upon my mood. Last night, when they were setting out into the snowy cold, I was a bit misty eyed as a few of the young men and one young woman offered me hugs. As I bid them farewell, a pang of sorrow shot through me, knowing Calvin will never fill the void—the promise, or so I thought—that parenthood had once held: talking with my boy about the workings of the world, seeing him play games with friends, reading his written words, knowing some of his thoughts, meeting his sweethearts, helping him achieve his dreams, perhaps sending him off to college or traveling with him to distant places in the world.

This morning at four, when the snow had stopped and the air was cold and still, Calvin suffered his first partial complex seizure in thirty days, the longest stint between them in over a year. He made it nine days between grand mals, which isn't horrible considering he is taking almost zero benzodiazepine and far less CBD oil than he was a few months ago. As the day has worn on, though, the seizures keep coming. He's had five thus far; the THCA isn't keeping them at bay, perhaps because he has a low-grade fever, so I gave him a bit of THC rescue tincture to see what it can do.

For now, he is back in his bed and resting with the net pulled over. Michael is downstairs making another curried shepherd's pie for tonight's second class of students who are coming over. I'm sitting on Calvin's changing table trying not to despair about so many seizures within just one day ruining what had started off as a decent month in terms of numbers. And, I'm thinking of those nice kids who, if only for a moment, gave me a piece of what my heart is sorely missing.

12.07.2017

earth's elixirs

From yesterday:

We got a good soaking last night. As a result, the spruce bark is black, the cedar mulch coffee brown, and pine needles lay in a copper carpet skirting the lawn. The low sun has reddened up the small-leaf rhododendrons dotting the back yard. At the perimeter, maples and oaks and other deciduous trees are mostly naked save a few bronze leaves at the top too stubborn to surrender.

When it pours like it did last night, I feel as though the world has been bathed and renewed, as if the rain were some kind of elixir for the toxic political climate we find ourselves in this year. I woke this morning in the wake of the storm, fully cognizant that Calvin had made it without having any seizures during the recent phase of the last full moon. On Friday, if he makes it that far, it will be four full weeks since his last partial complex seizure—a longer stint than he has gone in over a year—and ten days since his last grand mal. If he continues without any hint of partial seizures, I'll be more convinced that the CBD cannabis oil we've been giving him—one that we halved a few weeks ago, though one that seems effective in lessening some kids' seizures—might be a trigger for Calvin; he rarely suffered partial complex seizures before starting CBD in November three years ago and, until now, I was certain the culprit was exclusively benzodiazepine withdrawal.

This morning I took Calvin to the pediatrician for his annual exam. These past few years, I've rarely had to take him to the doctor; he scarcely gets sick anymore. Gone, it seems, are the days when calendars were choked with appointments to see the neurologist, the neuro-ophthalmologist, the endocrinologist, the gastroenterologist, the nephrologist, the orthotist, the phlebotomist. Virtually gone are his daytime grand mal seizures. Gone, it seems, are his sleepless nights. At the office Calvin remained quiet and calm. He walked well and tall. He stood utterly motionless on the scale without any support while we checked his weight (he's little for a kid who in February will be fourteen, weighing in at 58 pounds unclothed and just 4'4" tall.) I updated his meds, proud to report that we have reduced his benzodiazepine from a daily high of 35 mgs down to just 0.6 mgs, most thankful to my homemade THCA elixir—and to Remedy dispensary for their cannabis flower—for its help in doing so.

After I dropped Calvin at school I took Nellie to the fields. There, a friend told me that a group being called The Silence Breakers—courageous women and a few men who have publicly denounced their sexual harassers and assaulters—were chosen collectively as TIME magazine's Person of the Year. I was happy to learn that TIME didn't name the current POTUS who has broken every precious tenet that Americans should treasure—truth, justice, honor, trust, respect, equity, decency, discretion, goodness, wisdom, sensibility, humility, humanity. As I strolled home, I held the image of The Silence Breakers close to me, and beamed.

In the past hour, the sun has begun peeking out from behind the clouds, bathing the greenery with its own elixir. I sit here at my desk in the quiet before Calvin comes home, silently citing my gratitude for the many things provided me:

lovely husband. wonderful pup. extraordinary child. the hope of his emerging. the village that helps us raise him. cozy home. marvelous garden. enough food. enough drink. enough clothes. enough heat. enough love. compassionate, humorous, generous, intelligent friends. a world full of righteous justice warriors daring to take on willful ignorance, liars, perverts, tyrants, phonies, narcissists, hypocrites, bullies, zealots, bigots, blowhards, gluttons, racists, white-supremacists, misogynists, sexists, homophobes, xenophobes, crooks and thieves, and bring them to their knees.

I also understand that fear and hate are bedfellows, and ignorance is often stubborn, which is why this earth needs repeated bathing—in truth and justice, not in deception, bigotry and greed. So I continue looking for earth's elixirs, for my child, my family, my community, and for what ails the world. Most of the time, I find it in speaking and communing with others. And, most gratefully, I find it in mere words.

12.01.2017

pammukale

From a work in progress:

The spring water tastes soapy, these old stones soaking in its broth, and as I glide underwater, eyes open, I scoop up mouthfuls of what I’d like to think is from the Fountain of Youth, and I wonder what it’d be like to live forever. These sunken pillars I encircle are broken, ancient and pitted, marble ruins designed to brace a mighty roof, not meant to stew in bubbles singing up from the earth. Some stones are completely immersed, while others peek their caps and spines above the water to dry in the sun in such a way that reminds me of beached seals. I choose one on which to rest my head and, draping myself across its girth, I watch droplets, like pearls from a broken strand, scatter across my arms, gravity tugging each one back home into the pool. Sifting sand between my toes, I can hardly believe I’m swimming with this history, touching toppled citadels with bare feet, running fingers across a rugged facade that holds so many memories of ancient Romans, Turks and Greeks. I wonder if lovers carved their bliss or misery into these stones centuries ago. For a moment, I wish my parents could see where I am, go where I have gone, retrace my steps wearing holes into thin soles treading countless miles with nothing but a forty-pound tote.

After a while my skin begins to prune, but I remain in my quiet chamber which feels so much like a womb. The others here are all strangers to me. Some are mothers, their children perched on sunny rocks hugging their knees, little gargoyles on a wall. A few of the women have Roman noses and look, perhaps, like Fellini stars, though have names like Fatma and Hilal. Their dark manes spill in ringlets over gleaming shoulders, mermaids emerging from this inland mineral sea. I want to know them and hold them, go with them and eat their homemade yogurt and cheese, frolic with their flock of happy kids, play charades, speaking with hands instead of mouths, which is all we can do to be understood. At this I know I am good.   

I dry myself and dress, grab my backpack and set out to the limestone falls. Alone, I stand upon the vast cascade of Pammukale, white as clouds, icicles or frozen waterfalls, where each scalloped terrace cups a brimming pool like I’ve seen in some sick Hollywood mansions in the hills. Standing there I feel lost, looking out to the unreachable horizon, its glare concealing what might be between me and the pristine.

I go south by coach to the coast at Kaş then Fethiye, Marmaris, Bodrum. Each bus is full mostly of men, their faces beaten into leather by the Mediterranean sun. They’re smoking hand-rolled cigarettes, rolling prayer beads between callused fingers and gawking at me mere inches from my nose. I flash photos of them, their eyes wide like little kids; the likes of me—a young woman traveling alone—a rarity in these parts. Through the stale haze in the back of the bus I see hens flapping their wings in the arms of peasant women, their clean but crusty-nosed children peeking from behind their mothers’ skirts.

In each seaside town I spend a day or two for a buck a night to sleep in neat pensions with new Australian friends, waking to a fresh loaf of bread every morning and a jar of chocolate-hazelnut spread for three. From Kuşadasıe we take a day trip by taxi through hilly country to visit the house of the Virgin Mary. The driver lets one of us take the wheel. At the base of the mountain we get out and hike a few miles up its face, traversing through tufts of shrubs, thorny briers and knee-high rocks. What brought her here? I wonder, so far away from her son, Jesus. Then I wonder if it is all a myth or hoax, because why would she travel so far away and set herself atop a mount with nothing to comfort but a babbling brook, alone with just her thoughts. And, once inside the small, dark room fashioned with handmade brick, small candles flickering in the draft, I think, perhaps because her boy was dead.


Photographer unknown

11.28.2017

end of november

When I fetched Calvin from the bus yesterday, he had a smile on his face with his tongue stuck out into the frigid wind, a cute look that has emerged in the past several months. I bent down to kiss him and I smelled what I call seizure breath, a telltale sign of a looming grand mal. I sniffed again just to be sure I wasn't imagining things; he had had a grand mal the morning before, so he wasn't really "due" for another one until sometime later in the week at least.

As the afternoon wore on, the low sun casting its long shadows, I noticed other omens: bouts of shrieking, flushed cheeks, fingers in his mouth, eye poking, irritable and whiny before bed. As a result, just before midnight I woke up to give him a dose of THCA tincture for good measure, but it wasn't enough to thwart the grand mal that came at 4:20 a.m.

My boy is still not back to baseline, so I am keeping him home from school again, at least for the morning.

November, which started out pretty badly with a rash of grand mals and partial complex seizures within the first twelve days, calmed down after we halved Calvin's CBD oil on the thirteenth; he hasn't had any partial complex seizures since then and, until last Sunday, he'd had only one additional grand mal. However, including that one plus the one this morning, he has had a total of six this month, and a count of nine in just thirty-four days—twice his monthly average of grand mals. The end of November can't come soon enough.

Nonetheless, I am trying to remain positive, though I am anxious and watchful this morning, hoping he won't have any partial seizures which have a habit of occurring in the wake of his grand mals. If we could eliminate his partial seizures he wouldn't miss so much school, a place where he learns and, on good days, seems to thrive. I'm also reminding myself that, though he had a fraction of the seizures before starting the benzodiazepine wean over three-and-a-half years ago, he was an impossible child, reducing me to tears on most days due to his disconsolate mornings, incessant shrieking, extreme hyperactivity and chronic insomnia, which lead Michael and I to agree that we'd exchange his poor behavior for a few more seizures, hoping to improve our family's quality of life. To a great extent we were right, though the hardship now is the number of days Calvin has had to stay home from school.

As with every year, the advent of winter-like weather—bone-chilling winds, shrunken shrubs, short, cold days, naked trees—causes me to pine for the spring, this time more than ever. By the first of March Calvin will have taken his last dose of clobazam, the benzodiazepine he's been on for years and one we've been painstakingly weaning from a daily high of thirty-five milligrams to just over half of one. My hope is that once the benzo clears his system, Calvin will have fewer seizures simply because he will no longer be in active withdrawal. We will see. If not, I'll be on the hunt for some other remedy, November a distant memory.

Photo by Michael Kolster

11.26.2017

chimerism

At two-fifty-five this morning, I opened my eyes and realized that Calvin had been sleeping deeply—too deeply—since we'd put him to bed just before seven. Because of some typical harbingers yesterday, I suspected an oncoming seizure, so I decided to get out of bed and give him a dose of my homemade concentrated THCA tincture while he slept, an attempt to thwart an early morning fit.

Just as I was looking in on him, though, he let out his seizure scream, a disheartening sound not unlike someone who has been scared to death. I hit the timer and grabbed the vial of frankincense while Michael detached the safety netting and lowered the side panel of Calvin's bed. I dabbed a bit of the aromatic oil on the sheet near Calvin's nose, then rubbed some of it on the soles of his feet. The seizure was shorter than most, and after it was over, I gave him his morning clobazam early, plus the dose of THCA tincture I had meant for him to get.

My boy slept soundly for the next hour and a half, though I remained awake next to him thinking about how incredible it was that I woke just moments before the seizure hit. I remembered a study I'd heard about a few years ago citing a phenomenon called microchimerism, a condition in which cells from a fetus cross the placenta and enter the mother’s body where they can become part of her tissues forever. I wondered if microchimerism is responsible for what I like to think of as mother's intuition. I wondered if perhaps microchimerism is the reason I woke just before Calvin's seizure, and why I woke eight days ago in Washington DC at the exact time Calvin was having a seizure at home in Maine, and why I sometimes dream of Calvin seizing, only to awaken mere seconds before he has one.

When I looked into microchimerism, I found its root in the word chimera, a mythical fire-breathing lioness with the tail of a serpent and the head of a goat rising up from her body. In ancient Greek mythology, the chimera was an omen of storms and natural disasters. I often think of seizures as storms in the brain. I sometimes—lovingly—see Calvin as a walking disaster, an accident waiting to happen.

After giving Calvin the THCA tincture, he seemed back to baseline by the time he woke up. I'm feeling more and more confident in THCA's ability to control Calvin's seizures to a great extent, and proud of myself for having fiercely scoured the internet five years ago in search of such an elixir. And at times, I do feel like some kind of chimera, a fire-breathing beast, with Calvin, my little goat, rising from inside of me.