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.

11.23.2017

thanksgivings

winter gardens with red-leaved rhododendrons. sunny days after rain. sweet angel thai food. eating home-roasted hazel nuts out of the shell. communion. the smell of onions sautéed in olive oil. running water. seizure-free days. brined turkeys. chef hubby. kinfolk. sweeney potatoes. warm rolls with butter. roasted brussels sprouts. chrysanthemums and peach-colored roses. folks gathering around a table. vino. chorizo dressing. new friends. cozy home. gas stoves. bourbon on the rocks. candlelight. pie. pie. pie a la mode. wood burning stoves. cranberry sauce and gravy. so many days with michael home. quiet streets. low light through the trees. neighborhood strolls. crazy dogs. in-laws. dollar store candle holders. okay kid. stereo.

11.20.2017

out of this world

On Saturday at four in the morning at my friend's house in DC, I woke up abruptly, looked at the clock and thought, I bet Calvin is having a seizure. Sure enough (I found out later when I called home) he was. It's a helpless feeling being a world away from my son, particularly when he isn't doing well. 

I managed to go back to sleep, but not before pondering the unforgettable images I'd seen at the The National Museum of African American History and Culture the day before. I had spent hours there, perusing several floors inside the massive structure which reminded me both of a ship and an African basket, with its sculpted bronze facade. My journey began in the building's bowels in the year 1400, the advent of the African slave trade. Visitors, most of them African Americans, wove their way through artifacts, descriptions and quotes chronicling the hellish transatlantic voyage that enslaved African men, women and children had to endure. I read accounts of what I already knew, of children being torn from their mothers to be sold at auction, of humans being stripped, oiled and groped, regarded as chattel and treated like animals, of humiliation and rape, of lashing and lynching and burning at the stake. I read what I know to be fact, that all men are created equal, and yet claim to this truth is still out of reach for too many souls. At times the images brought me to tears, mourning the wretched things white men did to fellow human beings, lamenting the ongoing racism in this nation and its denial by so many, but hopeful that folks can continue to be enlightened beyond their ignorant selves.

That night I used Uber for the first time, perhaps convincing my young driver, Mario, to purchase health insurance on the ACA exchange. When I reached my destination, an Italian restaurant with white linen-topped tables, I sat and drank Barbaresco and nibbled on succulent roasted octopus, a whole Mediterranean fish filet, and pasta frutti di mare, all courtesy of my patron, our dear friend Ades who lives in Virginia and adores our son. We caught up on our goings-on, and I expressed hope that Paul could visit us in Maine more often. Just shy of midnight, we closed down the restaurant with a mini caramel cheesecake, an espresso, and twin glasses of Limoncello.

My short visit out of this world and into to our nation's capital had begun as a good one, though peppered with sadness missing Michael, Calvin and Nellie, and when reminded of how significantly disabled my son is—at first smiling at walking toddlers no taller than my knee, then weeping at the sight of children talking with their fathers and quizzing their mothers about historical scenes; my grieving over Calvin's great limitations never ceases to ease.

Though the weather was windy and frigid, I managed to stay warm by walking in-between monuments, memorials and museums. I walked over six miles each day, not including the hours I spent on my feet viewing exhibits. On Saturday I visited The United States Holocaust Memorial Museum, which was as sober as the previous day's tour through our own nation's ongoing wrongdoings against African Americans. Again, I wept for the innocents who suffered such miserable crimes of humanity. One by one I came across heart-wrenching displays. The first people to be killed by the Nazis were the mentally and physically disabled. Children like my son Calvin, whether Jewish or not, would have been taken from their parents and murdered by use of lethal injection in an attempt to cleanse the Arian Nation. The Nazis killed the elderly and the infirm. They killed Catholics and homosexuals. They systematically imprisoned and murdered millions of Jewish men, women and children.

I came upon a familiar quote we best heed which reminded me of our sorry-ass POTUS, too many Republicans in congress and other deplorable White Nationalists and bigots:

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out— 
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out— 
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.


Martin Niemöller

And another, thought to have been spoken by Albert Einstein:

The world is a dangerous place not because of those who do evil, but because of those who look on and do nothing.

And, I read aloud with conviction the words emblazoned on a banner in the hall of the Holocaust museum:

NEVER AGAIN

Indeed.

My last morning was less somber. It began with a latte topped with heart-shaped foam. Across the table from me was my host and new friend, Jen, who had given me her bed, lent me her hairdryer, her jacket and a small backpack, and was my personal docent unearthing the best pork bun in China Town and helping me navigate the city. 

Hours before my train to the airport departed, I was fetched by our dear friend David's eighty-two year old mother, Yolanda, who I had never met before. She treated me to the most exquisite brunch at the swanky Hay Adams hotel that was completely out of this world. As the servers poured us endless flutes of champagne, we chatted, laughed and got teary-eyed as if we were dear old friends, all while nibbling on delectables from a ridiculously sumptuous buffet which included oysters on the half shell, seared tuna medallions, lumps of melt-in-your-mouth mozzarella buffata, roasted apples and pears, roasted split figs stuffed with chèvre, prosciutto, salami, scallops, prawns, smoked salmon, beet and quinoa salad, roasted eggplant and squash, tender asparagus spears with hollandaise sauce, ruby red grapefruit sections, every kind of croissant, raisin buns, savory cheeses, and candied pecans. Then, if you can believe it, came the main course. I chose crab-cake Benedict with poached eggs. Yolanda opted for steak au poivre with duck fat fries on the side. As if that wasn't enough we indulged on tiny cups of creme brûlée, and a slice of chocolate mouse cake. All the while I kept reminding myself to be grateful for my good fortune in this often intolerant, oft-forgiving, crazy-ass, upside down world. 


11.16.2017

dc or bust

After a month of angst, this morning I boarded a plane bound for Washington DC, flying on a ticket that was meant to take me to the Womens March last January, but didn't because I got cold feet.

As I made my way through the Jetport security I heard someone call my name. I looked over my shoulder to see my friend Lynette, a woman who used to be my colleague and became my boss at the last job I held before Calvin’s birth, which was as a senior apparel designer at a major outdoor company in Maine. We embraced then headed for the gate where another of my former colleagues, Jackie, was waiting. The women, both faithful followers of my blog, and two of only a handful or three of people I liked and respected at my job, were traveling together to QVC headquarters hoping to place a line of shoes Jackie designs, called Jax and Bard.

When the three of us gave each other a group hug, I told them that just yesterday I had seen messages from them both on social media and had looked them up to see their lovely faces. Jackie said, “there are no accidents” and I promptly stated my disbelief in such notions.

We had some time to kill before boarding, so they suggested we get Bloody Marys at the bar. It was just what I needed to unravel my worries over leaving behind Calvin and Michael to fend for themselves.

While boarding the plane, I glanced down at the small pink and green floral kerchief I tied to my luggage so it can be easily identified, a Liberty Print square with scalloped crocheted edges that Lynette had brought back to me from London over fourteen years ago. I’ve used it to flag my luggage all these years in-between. The words, there are no accidents ran through my brain as a twinge of nostalgia pricked my skin.

On the flight south we sat together in the last row, caught up and reminisced. They told me that often my blog brings them to tears; I told them how much their loyal readership means to me. We traded war stories of our employment, asked after former colleagues, and fawned over Jackie's shoe designs.

I made it to DC safely and called home to check on my boys. Calvin was happy splashing in the bathtub and Michael seemed just fine. And, yes, I am as crazy as I look in this photo, especially when I'm about to be citified.

Selfie by Jackie Lindstedt

11.13.2017

tinkering

This month has already been a terrible one for Calvin, mostly in terms of seizures rather than behavior. I'm trying not to sink back into despair after having enjoyed a pretty good September and October which I had hoped meant the beginning of better days for my son.

After yesterday morning's grand mal seizure, the sixth one in just over two weeks—a number that I consider high for an entire month much less seventeen days—and having had seven partial complex seizures in the span of five days last week, I laid with Calvin in bed racking my brain about what I should do next.

The thought occurred to me that perhaps the CBD might be the culprit and that I should cast my net out to other parents on social media asking them if their children have experienced an increase in seizures with the addition of CBD. Scores of parents confirmed my hunch.

So, yesterday we halved Calvin's CBD oil. He slept well last night and did not have any partial seizures this morning. After I put him on the bus, I took out my calendars and, starting with 2014 when I first began giving Calvin a homemade THCA oil and, two months later, started his benzodiazepine wean, I charted his grand mal and partial complex seizures. I saw what I had not seen before: what looked like a pretty clear correlation between beginning a CBD oil (seven months after the advent of THCA) and the re-emergence of partial complex seizures which had been virtually absent for years. At the time, I had introduced the CBD because of a fearful uptick in grand mals, and I remember thinking that the partial seizures and spates of status epilepticus were due to the benzodiazepine withdrawal.

There is no way of knowing for sure, but it will be interesting to see if my tinkering—this decrease in CBD oil, perhaps its eventual elimination—will result in the lessening or disappearance of Calvin's complex partial seizures. Cross your fingers and knock on wood that things get better and don't go all to hell.

Photo by Phoebe Parker

11.11.2017

some things stay the same

Hard to imagine this video was taken almost six years ago; some things change and some things stay the same.

This was pretty much what my day looked like today, minus the safety harness Calvin is wearing, minus the husband by my side, minus Rudy The Dog, minus the levity on that particular day. Calvin still insists on his quest to stare at the low southern sun; it is the bane of my existence, causing me to spend all of my time trying to eclipse its existence to the degree that my lone shadow can.

But after I screamed at the top of my lungs for him to stop, I impatiently loaded him into the car and took him to the gelato shop. There, he was compliant and seemed to love the frozen, minty-chocolate treat, then walked two blocks on downtown streets in near freezing temps without balking even once. Later, Calvin was content in the car on the drive to Michael's studio, then waiting for him to put his motorcycle to bed for the winter and to siphon its gas into our car.

Tonight, the fire is roaring and it is meant to get into the teens. We have leftovers of a white bolognese over rigatoni, and Repo Man is cued up on the screen.

11.07.2017

feeling defeated

Years ago I lost my religion. Had I not then, however, there's little doubt I'd have lost it raising a disabled child with a chronic condition as heinous as epilepsy—just one of the many things in life, besides starving children and war and genocide and massacres in churches, that proves to me there is no merciful God in the heavens.

At three-fifty this morning, Calvin suffered another grand mal, bringing his two-week total—not including complex partial seizures—to five after having enjoyed nearly an entire month having had only two. Michael is on his way home from Boston today, so I had to go it alone.

Before the seizure, I got up more than a handful of times to lay Calvin back down in his bed and give him some of my homemade THCA tincture aiming to thwart a somewhat-anticipated seizure. I awoke later to the blood-curdling shriek that usually announces the ordeal. I made sure his head, hands and feet weren't smacking the bed. I yanked off his socks and rubbed frankincense on the soles of his feet. When it was over, I gave him some THC. Then I gave him his benzodiazepine early. I chased them both with syringes of water. I changed a soaking diaper. I got in next to him. He fell asleep. He woke minutes later having wet himself and his bed. I changed him again. Every few minutes he kept sitting up, banging the bed, working his fingers in a frenzy in front of his face, his heart beating furiously in his chest.

He's sitting in front of me now and I hardly recognize him, the way he juts his jaw, purses his lips and clenches his teeth creating a phantom dimple on the side of his cheek that I only see in the hours before a seizure. He's fingering like mad. I feel bad for him and yet irritated and slightly repulsed.

I wonder how I can keep this up. Keep following him around the house. Keep running for him and lunging to prevent him from a fall whenever he gets into a stand. Keep thwarting his eye-poking and sun-staring and shirt-biting and head-banging. Keep changing his diapers and hearing his shrieks and chopping his food and wiping his drool and mopping his juice and laying him down and picking him up and holding his hand and giving him supps and watching him seize and never getting enough sleep, never able to finish any endeavor.

I wrote to Michael this morning telling him what happened. I told him I was feeling defeated. No doubt he feels helpless. All I want to do is go back to sleep.

Photo by Michael Kolster

11.05.2017

full moon fit

Last night, when the full moon was at its peak in the sky, I watched my son while his father held him as he seized. It was an unusual time for Calvin to have a grand mal, and had Michael and I not stopped giggling in bed, we might not have heard it at all. At first I thought the sound was Nellie licking herself, but when we quieted I recognized the rhythmic smacking of Calvin's lips.

Unlike most nights, I hadn't fully expected this one; I was sure Calvin would make it to day ten without any seizures in between. He'd shown only a few of the harbingers that ring them in.

Still, nine days without any kind of seizure isn't a bad stint compared with at least half of Calvin's last eight months. But it isn't long enough to be sure that the new CBD oil we switched him to, the one with slightly more THC than the last one, is doing any further good. What I am interested in seeing is whether this new oil from Haleigh's Hope might help limit the partial complex seizures Calvin is prone to having in the hours and days after most of his grand mals.

What does seem somewhat clear is that the new concentrated THCA tincture I made a few weeks back does appear to thwart his grand mals to some extent. Typically, when Calvin has a grand mal before midnight, he almost always wakes later to a second one. This time, having given him doses of the tincture just after the seizure, then at 1:30 a.m. and again at 4:00 a.m., he did not have any more.

My boy is still not back to baseline, and the last time he had an evening grand mal he suffered two more the next morning. So we'll sit tight here at home today, giving him a tiny bit extra THCA, thankful that the moon has entered its waning stage.

Photo by Unknown

11.04.2017

tricks and treats

Last Sunday's storm put so many of us out of power that town's Halloween celebrations were postponed until last night. So when five o'clock rolled around, I dressed Calvin in his best camouflage and walked him down to Woody's with his buddy Mary holding his other hand. We visited three other neighbors where Calvin managed to grab pieces of candy from each bowl, then attempted to put them into his mouth, wrapper and all. Though we hit half as many houses as we did last year, it was his best evening of trick-or-treating in his three-year history of going door to door, even with a boot splint on his left foot protecting a recent injury.

When Calvin was done, Michael and I snuck out for a date. As dusk fell we made the ten-minute drive to our friends' young restaurant, Salt Pine Social. There, we sat at the bar imbibing under ornamental lights that reminded me of wrapped candies. I marveled at the gigantic ice cube in Michael's glass of bourbon, one of several dozen that the bartender had painstakingly carved from an entire block of ice. One by one, tasty plates emerged from the kitchen. First, we enjoyed a pâté of bacalhau—the Portuguese word for cod—resting in a spicy tomato sauce with crispy fried mini polenta cakes. Next to arrive was a platter of local oysters on the half shell accompanied by an exquisite glass of madeira, all compliments of the chef. In between dishes our hosts stopped over to visit and to bestow us with hugs and kisses. After we had gobbled down the mollusks, we supped on plump grilled octopus, poached turnip and shaved radish disks steeped in ovgolemono broth. As we were finishing that dish along came another comp from the chef: a parchment-lined basket of tempura-fried avocado wedges with lime and chipotle remoulade (my mouth is watering just writing this). We finished with a medallion of monkfish liver the color of yams or dark pumpkin, served with dainty pickled blackberries, fried rice crisps, pear nuggets, jalapeño, charred cucumber and a drizzling of tangy ponzu sauce.

As we dined, I expressed my gratitude both silently and out loud for our many fortunes in this life—for having gotten our heat back within two days of the storm, for the huge tree having missed our house, for having the luxury of drinking at a bar and eating scrumptious food in a handsome establishment, for lovely friends and generous hosts, for colorful light fixtures that look like candies or planets and stars, for Calvin's friend and caretaker Mary, for gauzy scarves from Paris and sexy shirts from Salvation Army, for reliable, comfortable cars, for beautiful gardens, for Calvin slowly coming off of benzodiazepine, for cannabis as his medicine, for a boy who is making strides and seems to be getting incrementally better by the day, for kind and loving neighbors, for a Halloween free from seizures or hospitals or accidents or surgeries.

Back at home, the large bowl of candy we had left out with a note asking children to "please take just one or two" was empty. Knowing full-well seventy children had not come by, no doubt someone had absconded with the sweets. Woody told me later that he'd seen a group of teenage boys lurking around the porches of those of us who had left candy in our absence. We had been tricked, even though we had offered them treats in return for mercy. In the scheme of things, though, and in recounting so many fortunes, I thought to myself, it's a first-world problem.

Photo by Mary Booth Scarpone

11.02.2017

everything you wanted to know about benzodiazepines but were afraid to ask

. . . and, or, your or your child's doctor didn't tell you or know about in the first place.

Below are some outtakes from the Ashton Manual, a critical guide—a bible, really—for current and potential benzo users to peruse, study, familiarize and perhaps memorize.


Calvin is in his fourth year of weaning his second benzodiazepine. He is down to less than one milligram per day from a high of thirty-five—an enormous dose for a pint-sized child. The first benzo, clonazepam, was prescribed when he was just three years old. Had I known then what I know now, I would have flatly refused his neurologist's suggestion to put Calvin on it, particularly while simultaneously starting him on two other drugs. Alas, as neurologists seem to do, the doctor downplayed its side effects, neglected to inform me of the body's tendency for rapid habituation to it, and assured me it was meant as a bridge drug to be used for only a few weeks. It took another benzo, clobazam, to safely come off of it two years later. Calvin has been on clobazam for the good part of a decade. Again, had I known then what I know now. Sigh.

Paradoxical Stimulant Effects
Benzodiazepines occasionally cause paradoxical excitement with increased anxiety, insomnia, nightmares, hypnogogic hallucinations at sleep onset, irritability, hyperactive or aggressive behaviour, and exacerbation of seizures in epileptics. Increased aggression, hostility, and impulsivity occur in some subjects and may result in attacks of rage and violent behavior. 

Less dramatic increases in irritability and argumentativeness are much more common and often remarked on both by patients on long-term benzodiazepines and by their families.

Impairment of Memory
Benzodiazepines have long been known to induce anterograde amnesia. 

Tolerance
Tolerance can develop to all the actions of benzodiazepines, although at variable rates and to different degrees. Tolerance to hypnotic effects develops rapidly: sleep latency, stage 2 sleep, slow wave sleep, dreaming, and intrasleep awakenings all tend to return to pretreatment levels after a few weeks of regular hypnotic use.

Tolerance to anxiolytic effects seems to develop more slowly, but there is little evidence that benzodiazepines retain their effectiveness after 4 months of regular treatment, and clinical observations suggest that long-term benzodiazepine use over the years does little to control, and may even aggravate, anxiety states.


Structural Brain Damage
The question of whether prolonged benzodiazepine use can cause structural brain damage remains unanswered. It remains possible that subtle, perhaps reversible, structural changes may underlie the neuropsychological impairments shown in long-term benzodiazepine users.

Withdrawal Symptoms
Abrupt withdrawal from high doses can cause a severe reaction, including convulsions and psychotic episodes. Withdrawal symptoms from therapeutic doses are mainly those of anxiety, both psychological and somatic, but certain symptoms such as sensory hypersensitivity and perceptual distortion may be especially prominent, and depression may sometimes be a prominent feature.

Long-term benzodiazepine use is associated with more severe adverse effects, including memory impairment, depression, tolerance, and dependence.

Mechanisms of Withdrawal Reactions
Drug withdrawal reactions in general tend to consist of a mirror image of the drugs' initial effects. In the case of benzodiazepines, sudden cessation after chronic use may result in dreamless sleep being replaced by insomnia and nightmares; muscle relaxation by increased tension and muscle spasms; tranquillity by anxiety and panic; anticonvulsant effects by epileptic seizures. These reactions are caused by the abrupt exposure of adaptations that have occurred in the nervous system in response to the chronic presence of the drug. Rapid removal of the drug opens the floodgates, resulting in rebound overactivity of all the systems which have been damped down by the benzodiazepine and are now no longer opposed. Nearly all the excitatory mechanisms in the nervous system go into overdrive and, until new adaptations to the drug-free state develop, the brain and peripheral nervous system are in a hyperexcitable state, and extremely vulnerable to stress.


Psychological Symptoms of Withdrawal
Excitability (jumpiness, restlessness), insomnia, nightmares, other sleep disturbances, increased anxiety, panic attack, agoraphobia, social phobia, perceptual distortions, depersonalization, derealization, hallucinations, misperceptions, depression, obsessions, paranoid thoughts, rage, aggression, irritability, poor memory and concentration, intrusive memories, craving.

Physical Symptoms of Withdrawal
Headache, pain/stiffness (limbs, back, neck, teeth, jaw), tingling, numbness, altered sensation (limbs, face, trunk), weakness ("jelly-legs"), fatigue, influenza-like symptoms, muscle twitches, jerks, tics, "electric shocks," tremor, dizziness, light-headedness, poor balance, blurred/double vision, sore or dry eyes, tinnitus, hypersensitivity (light, sound, touch, taste, smell), gastrointestinal symptoms (nausea, vomiting, diarrhea,,constipation, pain, distension, difficulty swallowing), appetite/weight change, dry mouth, metallic taste, unusual smell, flushing/sweating/palpitations, overbreathing, urinary difficulties/menstrual difficulties, skin rashes, itching, seizures.


Photo by Michael Kolster

10.31.2017

ridiculous existence

As absurd as it sounds, on sunny autumn mornings when my kid is home from school—this time because the whole town's power went out in Sunday's storm bearing heavy rains and sixty-five-mile-an-hour winds—I follow him holding a large piece of cardboard as he crawls around, trying to thwart his incessant effort to stare at the sun. It is a ridiculous existence to be employed as his shadow, blocking the sun, stymieing his biting and banging, wiping his drool, spotting him up and down the stairs, catching him before he trips and falls. It is hard hanging out with a kid who can do almost nothing, especially when there is nothing to do.

Yesterday, we took a trip to the grocer. Once inside, Calvin had a mini tantrum, having not recognized the place since it was somewhat dark inside, the generators only able to run a few lights and a handful of registers. We couldn't buy dairy or meat or greens or anything frozen since the store was trying to preserve its resources. The lines were long, but two nice gentlemen, seeing me with my gimpy son peg-legging around in his boot splint and trying to bite every surface in sight, offered to let me cut in line. I gladly accepted their gesture.

As we left the store I told Calvin how proud and grateful I was for his compliance and patience. Hearing my praise, he gleefully stuck out his tongue and smiled. 

On the drive home I imagined there were plenty of folks complaining about their loss of power, about the roadblocks diverting traffic from downed trees and power lines, about damaged landscapes and houses. Standing in line in the darkened store had made me think of how goddamn lucky we are compared to people in places like Venezuela, Yemen, Puerto Rico, Iraq, Appalachia, Syria, Haiti and other places racked with war, genocide, disease, corruption, natural disasters and famine. We enjoy a ridiculous existence. We have a roof over our heads; the enormous spruce in our back yard, which had the top twenty-five feet of its three leaders ripped off in the storm, luckily missed our bedroom by mere feet. We have food in the pantry and running water. We have a neighbor who already chopped up the spruce and will soon be hauling it away. Michael has a studio up the road that has power. We have a wood stove for keeping us warm and a gas stove top for frying eggs and grilling bread and brewing coffee and warming milk and heating soup. We have cozy beds and pillows and comforters, and matches and candles and lanterns and flashlights and headlamps to see our way from room to room. We have medicine, wind-up clocks, dry shampoo, telephones, clean clothes, bourbon, and there's even some ice cubes left to pour it over. In addition to all we have, it is somehow luxurious to spend a day or two without email or social media or television news, and a quiet evening bathed in nothing but candlelight and warmth from a wood burning stove.

In other words, we have nothing to complain about, not even monotonous hours spent shadowing our kid as he makes countless loops around and around and around the house.


10.26.2017

wicked fits

At five-ten it was the crash that woke me, instead of the scream, my son's rigid body bashing into the side of his bed. It was his second grand mal seizure in as many days, even though last night I had strayed from my intent on not giving him the concentrated THCA tincture as he slept. I had a feeling another morning one was coming.

He'd been exasperatingly whiny from morning until bedtime yesterday, testing my limited reserves of patience due in great part to the effects of some serious sleep deprivation. I had snapped at him more than once, angrily shushing him, hungering for him to shut the hell up, at times shamefully telling him as much, at others, surrendering and folding him into my arms in love. I got frustrated with his restlessness, with his stubbornness, with the awkwardness of a strappy velcro boot splint the doctor had given him for his injured foot. I wasn't sure of the source of his distress, asking myself a battery of questions:

is it the new cbd oil? is it a tummy ache? a sore throat? does the boot fit? does he have an infection? is it a post-ictal funk? why am i such a jerk at times when he probably feels like shit?

I was in denial that his misery might be due to another impending seizure even though he'd had one that morning; grand mal seizures on consecutive days are not unheard of, but rare for Calvin. Nevertheless, I should have known. He had shown many of the omens: rashy butt, whininess, stubbornness, confusion, not eating or drinking, not pooping even having given him suppositories to help.

In the wake of this morning's seizure, I gave him his clobazam plus another dose of concentrated THCA tincture. Thirty minutes later I got him to take his Keppra. Soon after, he awoke to a partial complex seizure so I gave him a dose of THC rescue med, which works well, usually, to stop the barrage of wicked fits. I took his temp. He had a low-grade fever, so I gave him an acetaminophen supp. Those remedies seemed to tie him over, though he still wasn't himself, and at seven-ten he went into another grand mal, only the fifth daytime, conscious-onset one he's had in over three years. Michael had already left, so I made a judgement call and gave Cavlin the rectal Valium aiming to stop the cluster of fits.

My sweet boy is sleeping now. Outside his window I can see that the rain has just let up. Like my boy, the trees are nearly motionless and beautiful as the world around them wakes up. A blue jay hops from branch to branch sending a cascade of rain drops in its wake. The clock ticks by another second of a day in which this wicked epilepsy made up for a nineteen-day seizure-free stint.

10.25.2017

new day

My boy enjoyed a decent stint—nineteen days—between seizures of any kind. Alas, I pretty much knew it would come to an end. Last night at midnight he suffered a grand mal. It was notably less convulsive than most and, unlike other times when he has had a seizure that early in the morning, he didn't have any more. I attribute both facts to my new homemade concentrated THCA tincture that I had given to him at ten, and right after the seizure, then again at three a.m.

At five-thirty, Calvin woke to a low-grade fever, so perhaps he is getting ill, which lowers his seizure threshold. It is possible, however, that he has developed an infection from an injury he sustained at school last friday. As the radiology report stated, he suffered a "relatively large ankle joint effusion," an injury that his amazing orthopedist, Dr. Vincent Oliviero, explained is akin to an adult sprain, though in a child involves the growth plate making it prone to infection. Probably, though, Calvin is simply coming down with some sort of cold.

My plan, now that Calvin had the expected seizure, is to switch CBD oils from the 20:1 CBD:THC he has been using for three years to a 15:1 ratio, both made by the folks at Haleigh's Hope. The efficacy of the first one is unclear, but I've been hesitant to remove it during Calvin's benzodiazepine wean because a) it is best to limit variables, and b) in case it might be helping. Several weeks ago we reduced his CBD oil by a third hoping Calvin's complex partial seizures would decrease, and they did, though that could have been the result of having removed his B6 vitamin which had reached toxic levels. In any case, I figured trying a 15:1 ratio of CBD:THC might help improve his seizure control. And, so as to not be confused by too many variables, I will refrain from giving Calvin the concentrated THCA tincture I began giving him at night seventeen days ago, so that I can assert whether the new CBD oil ratio will help his seizure control. Plus, it would be better for the entire family if I didn't have to wake up to give Calvin medicine every night for the foreseeable future. Does that make sense?

In the meantime, I'm pleased with Calvin's progress this month—only two grand mals and three complex partial seizures thus far, which is significantly less than any month this year. I'm also grateful for his calm and content behavior, his number of smiles, his decent balance, his overall improved sleep, all in the face of an ongoing benzodiazepine withdrawal!

So, today is a new day. The earth is getting a good and overdue soaking. The sunrises and autumn colors are brilliant, the temperatures mild. I'm hopeful for what the future might hold.

Yesterday's pink sunrise, no filter.

10.23.2017

chemdog to the max

It has been seventeen days since we've seen Calvin have any kind of seizure. This is not his longest stint between seizures, but it is equal to the second longest in nearly a year, and while taking less pharmaceutical medication than he has in years. Prior to this stretch, Calvin was having a grand mal every four to nine nights with complex partial seizures in between. I attribute this luxurious dry spell to the new THCA tincture I recently made which, because it is concentrated and made with a little bit of organic cane alcohol to increase absorption, is easy for me to give to Calvin when he is sleeping with little fear of aspiration. I do not given Calvin his regular THCA oil at night because of the danger of inhaling so much oil, not to mention being loathe to commit to such a regimen when I don't get enough sleep as it is. But his seizures have been inching closer and closer together over time and, as a result, he's been missing a lot of school.

I came to the notion of making this tincture because, since reaching his current dose of homemade THCA oil three years ago, Calvin's frequent daytime grand mal seizures have virtually disappeared, and because I've often given him a concentrated THC rescue med made with alcohol with no adverse effects. My husband, who is prone to be a skeptic, has never fully conceded that my oil is due credit, but since Calvin has gone so long seizure-free in the seventeen days since the initiation of this new THCA nighttime tincture, he seems more convinced.

You may wonder what cannabis strain I use. I get it from the amazing folks at Remedy dispensary forty-five minutes north of here. It is a hybrid high in THCA called Chemdog. It was the first strain I tried for Calvin, having debated long and hard four years ago, finally deciding on a hybrid so as not to sedate nor stimulate him too much. In my mind, it has worked wonders and has also eased Calvin's protracted wean from the benzodiazepine, clobazam, aka Onfi; he has gone from thirty-five milligrams per day of benzo down to less than one and will be off of it, once and for all, end of February.

So tonight, amongst other things, I am celebrating Chemdog, whose name I think is funny since we've been known to call Calvin The C-dog, most lovingly, more than once.

Chemdog soaking in organic grain alcohol