sweet spots (cbd and others)

For awhile, I've wondered why the all-time most-read post on my blog is one called day five hundred. To my surprise, folks continue to find it amid the 1,843 posts I've published since starting my blog over eight years ago. In pondering the question, I reread the post and came to the conclusion that readers, perhaps mislead by its title, were and are interested in knowing how my son, Calvin, went five-hundred days without a seizure. In actuality, when I wrote the post Calvin had been free only from conscious-onset daytime grand mals. In other words, he was not seizure-free because he was still having them at night.

In revisiting the two-year-old post, I thought it prudent to give readers an update. Calvin continues to be virtually free from daytime grand mal seizures. I say "virtually," because in November, he had some sort of event at school which the ed techs were unsure of. When asked, they described attributes of both grand mal and partial complex seizures, thus confounding me. Suffice to say, nearly all Calvin's grand mal seizures emerge at night, most often in the wee hours of sleep.

Of note now is the fact that Calvin is having the same or fewer seizures as compared with recent years despite, a) being in the thralls of puberty, b) having finally weaned the benzodiazepine (Onfi, aka clobazam) he was on for years, c) taking less Keppra, and d) taking half the amount of my homemade THCA cannabis oil that I began giving him five years ago. What's different is the addition of Palmetto Harmony CBD oil I began giving him last June. At sixty pounds, Calvin's daily intake of the oil is 75 milligrams roughly divided into two doses. At this dose we have not seen any negative side effects attributable to CBD. In fact, he is sleeping a bit better, seems less agitated, is having far fewer partial complex seizures and very slightly fewer grand mals. Of late, his days between seizures have been mostly calm and filled with smiles and moments sitting on our laps sopping up hugs and kisses. When I've given him extra CBD in the wake of partial seizures, he hasn't gone on to have more, so I can be fairly sure the Palmetto Harmony CBD oil is not a seizure trigger for him.

Compared with other children his weight, Calvin may be taking more CBD, but he has a history of requiring high doses of medications to achieve any semblance of efficacy. I keep in my mind—and heart—Charlotte Figi, who is Calvin's size and whose mother Paige told me takes nearly three times the amount of CBD Calvin is currently taking. I also consider the children who are taking way more CBD—as much as 1,300 mgs per day—in the form of the new plant-based pharmaceutical, Epidiolex.

My hope for the new year is that we will find a CBD sweet spot which limits or eliminates Calvin's seizures without any adverse side effects—in essence, I hope we find a silver CBD bullet in this golden potion. If we do, I'd love to try reducing Calvin's THCA and Keppra.

In-between seizure days, I am finding time to get out of the house to enjoy my own sweet spots—rivers, beaches, forests, seas—which keep me healthy and mostly sane. I've been afforded such luxury because, after a three-month hiatus, Calvin's kick-ass nurse, Rita, recently came back to work for us via a better and more ethical agency than the one she left. Rita job-shares her part-time gig with a second nurse, Sue, who is exhibiting similar kick-ass characteristics. In addition, we have Mary, Calvin's former ed tech, who also provides us respite, and who has been kicking major ass for years as Calvin's aide. All three women are a joy to have in the sweet spot we call home.

So, in 2019, I'll continue my search for sweet spots, and I'll let you know if and when I unearth them.

on jesus, walls, alms and calvin

At four-twenty this morning, only three days after his last one, Calvin suffered a grand mal seizure. It was a typical one for him, self-limiting with full-body convulsions lasting ninety seconds. After it was over I wiped the blood trickling out of the corner of his mouth from having bitten his cheek or tongue. Watching my son seize is never easy, and would no doubt be terrifying, perhaps even repulsive, for most onlookers to witness, or for any parent to see their own child suddenly suffer. I think about other children who have their seizures at school. I wonder if they're made fun of behind their backs by other kids. I wonder if they are stigmatized and shunned. I wonder if they are thought of as alien in some ways. I wonder if they're walled-off from other kids; no doubt their epilepsy and its impact grossly misunderstood and feared.

On seizure days if Calvin rests, I often read the news and pop in and out of social media. The headlines lately seem to be all about the government shutdown over funding for a border wall. Apparently, Trump supporters are crowd-sourcing its funding, having raised in recent days seventeen-million dollars for the project. The notion sickens me, especially in this season of charity celebrating the birth of Jesus. I'm disheartened by the fearmongering and demonization of good and innocent people desperate in their attempts to find and make a better life here. If not descendants of slaves or indigenous peoples, we Americans came from immigrants. We mustn't be fooled by politicians eager to divide us for personal or political gain. Humans are the same the world over; if not for the accident of birth, we might be fleeing wrecked homelands, too. What claim have we to this land anyway?

In the days between Calvin's seizures, I came across two short pieces most worthy of reading this holiday season, one by a Muslim who attended Catholic high school in California, and another by the author of the outstanding book, The New Jim Crow: Mass Incarceration in the Age of Colorblindness. The first work expresses its author's love and reverence for Jesus. The second explores citizenship and immigration. The two pieces, which make for a lovely pairing, offer compelling arguments for welcoming immigrants and refugees.

Though raised in a Catholic family, I'm not Christian. Nonetheless, I embrace what the Bible says Jesus preached: unconditional love, compassion, acceptance, charity for the needy, the poor, the afflicted. It upsets me to see and hear so-called Christians maligning other decent human beings. It's hard to see folks hell-bent on erecting a wall to divide us from those who need and bleed the same as we. Like us, migrants are laborers. Like us, they love their children. They want to live a good life, free from poverty, exploitation, oppression, violence. And, yes, they pay billions in taxes. Like immigrants are to some Americans, my boy Calvin is misunderstood and derided by the ignorant for his alleged burden on society. But like Jesus, Calvin embodies the best of humanity, teaching us unconditional love, kindness, charity, acceptance, humility. I ponder the infirm in search of treatment, imagine the migrant seeking refuge. I ask myself and others, what would Jesus do? I doubt he'd champion a fund to build a wall between his people.

In this season of getting and giving, I'm keenly aware of and most grateful for the accident of birth in a nation of plenty to parents who were not poor, disenfranchised or oppressed. I'm thankful for our health, our home, our community, for my husband's gainful employment, for generosity, safety, love, brotherhood and sisterhood. Despite Calvin's suffering and burden, I'm grateful for his purity and affection, and for what his being stirs in me to be and do—to give alms to the poor, the hungry, the homeless, and to welcome those who need safe haven, building bridges, not walls, between the world's good people.

nostalgic christmas

Alone in the house with Calvin and Nellie while Michael spends a couple of hours at the studio. Silent Night is playing on the radio. For the first time in years I feel an emptiness, its source the absence of my mom and dad. I long ago lost my religion, but I sometimes still enjoy a few holiday traditions I did with them as a kid.

While feeding Calvin grapes I remember Christmases of my childhood, recall Dad goofing off in his new orange track suit, and making funny faces while carving the bird. Even the feeling of disappointment when certain gifts given to me weren't exactly how or what I'd hoped feels nostalgic. I wish Mom and Dad were still around. Wish they'd had a chance to know Calvin. Perhaps Dad would bounce him on his knees until he giggled uncontrollably. Maybe Mom would trap Calvin in her larger-than-life hugs, a flour-dusted apron tied around her ample waist. We'd sit around the table making jokes, passing dinner rolls and gravy. I've little doubt that Dad and Michael would've been famous friends, working in the kitchen, cleaning up the mess together. Michael's family eggnog would have been a big hit with Mom and Dad, though especially Dad who had a wicked love of sweets.

But they're both gone, Dad for some twenty-two years and Mom for a handful. Instead, I've got memories of them seared into my head—the smell of hot apple cider and of breakfast sausages and French toast wafting through the old brick ranch house. Holiday music coming from the radio atop the fridge. The huge tree all lit up and tinseled. The warmth of Mom's smile and embrace. The relentless razzing Dad gave each of us. How nice to see him when he wasn't working, though Mom, who was a homemaker for eight, never really seemed to quit.

Yes, these carols so familiar spark in me a visceral poignancy, and I'm overcome with a loneliness I know isn't uncommon during the holidays. But Michael will soon be home. Then friends will be arriving after sundown. Eggnog with bourbon and rum will be drunk. Savory meats will be carved and eaten. Wine will flow. Cake will be served with ice cream. Mom and Dad won't be at the table, but my own family will be, and the house will be full of love and laughter. And Calvin, whose days are virtual carbon copies of each other, won't know he's missing anything.

Mom and Dad, Harriette and Don

a week in photos: saturday

a week in photos: friday

a week in photos: thursday

a week in photos: wednesday

a week in photos: tuesday

a week in photos: monday

in the sparkling stars

When thirty-five degrees feels balmy, it's a sign one might live in the northern hinterlands, where at five o'clock a long-set sun lights up a mackerel horizon.

On our way to the fields, Nellie and I stop by Woody's just to see if he's all right. I ring the bell and through the window see his cat Norton scamper by. Once inside, I give Woody a hug and on its heels my usual grilling: What's for dinner? Any news to report? Are you out of dessert? Does your rib still hurt? A few weeks ago Woody, who turned eighty-six last July, stood up too fast, became dizzy, fell into a desk and fractured a rib. He's doing okay now. I thank the stars for Woody.

After a short visit, Nellie and I continue to the fields where most of the snow has melted. Off leash, she races around nose to the ground, smelling scraps of student-athletes' food now thawed and rotting in the spongy sod. There's a hint of pine in the air, plus wafts of smoke from neighbors' chimneys settling over us like fog. Strings of colored lights have begun popping up on neighbors' trees and shrubs. I stand in the center of the field looking up. Above us, only a smattering of stars peek out between sparse clouds. As they twinkle, I think of Lily and Ronan and Cyndimae and Gordon and Arnd and so many others who have left this world far too young. Now, I see them in the sparkling stars. On our saunter home, I glimpse another octogenarian friend, Nan, through a gap in the fence around her house. Her face is aglow from what I think is a laptop, and I wonder if she feels lonely without her husband Bob there to take care of; he now lives in a nursing home. I miss greeting him in his driveway on nights like this, smelling his sweet pipe smoke as I approached. He'd always say, "Nan doesn't let me smoke inside anymore," then he'd chuckle as he took a puff.

Almost home, a crescent moon appears tangled in the canopy of a scraggly oak. I'm thankful the moon isn't full, since those seem to trigger seizures in my son. The thought of seizures brings to mind Jakelin Caal Maqin, the seven-year-old Guatemalan refugee who recently died in US custody. She had suffered seizures before she passed, having made the arduous journey with her father to our so-called Promised Land. I wonder if these refugees who walk at night navigate by stars. I wonder what led to her demise. I read of border patrol agents sabotaging humanitarian water stashes left in the desert to aid desperate, parched refugees. What kind of people do such things to fellow human beings? Cowards. Monsters. Fools.

I call Michael from my new dumb phone to tell him that I love him. I hear Calvin squealing in his arms. It's almost bedtime for our boy. Soon, we'll change his diaper and put him in flannel pajama pants and two clean long-sleeve shirts. We'll give him Keppra, cannabis oil and water. We'll brush his teeth, lift him into bed, tuck him in under a goose down cover and thick fleece throw. We'll stroke his hair and kiss him. He'll be warm and safe, dry and hydrated. No hiding under desert sagebrush in the wilds. No risk of thirst and hunger. No sleeping on concrete floors in cages. No sitting in filth with scores of others. No abuse, neglect or trickery from foreign strangers speaking English.

Where has our compassion as a nation gone? Our embrace of others? No doubt to dirty dogs.

As I step into the house, warm light and air pour over me. Once more I glimpse the sky before I close the door. I see Jakelin there among the sparkling stars.

a week in photos: sunday

silent and indifferent

Slowly, she walks by my side under a tar-black sky, her blond paws darkening with dew. It’s the biggest patch of universe I can view around these parts, skirted with white pines, maples and oaks all of a similar height. As I look up into the center of the sprinkling of stars, a swath of clouds is disguised as the Milky Way. Near the northwest horizon I spot the Big Dipper, and above me is Cassiopeia, but I cannot find Orion, and I am at first vexed, then disheartened. For years now, in my fantasy, I've imagined Orion as Calvin's guard, rising over our house on clear winter nights, though I know there’s no such thing as a divine protector. I know because all I have to do is read the news about weary immigrants risking their lives on perilous journeys to escape murder, war and genocide, or see the countess homeless folks shuddering alone in the cold, or hear about the innocents riddled with bullets in churches and theaters, cafes and other public spaces in the name of hate or some so-called supreme race, false ideology or distorted god. I know because today I am reminded of the Sandy Hook elementary school first graders gunned down by a disturbed young man who was once a child himself. I know because of the millions of abused, exploited, interned, starving, neglected, diseased, disabled, chronically ill children in this world—even children like Calvin who are racked with seizures, some so severely that they don’t survive. Still, there are those who salt others' wounds swearing it’s all part of God's design.

In the center of this vast grassy stadium, a ring of trees looking on, I can see our breaths as mist begins to hug the earth in pockets at the field's rim. I want to venture to its center where by day the college athletes lope in ways Calvin will never do, out away from the glare of spotlights and the hum of engines. But harsh light grazes me no matter how far I go. From beyond the field's edges I can hear the traffic drone, but then I hear the night train whistling its orchestra of perfectly arranged notes, and I think how artful the conductor must be, how he or she finesses the whistle into a crescendo like I’ve never heard before, and I am grateful for so many things: for my husband, for my son, for my place in this spinning blue world.

Still, I want the sky to be blacker, the stars brighter and more evident. Looking up to see the mass of them knowing, though not fully grasping, their infiniteness, I feel insignificant, and I think about other beings on other planets doing the same, as if looking through a window or perhaps into a mirror. Then I consider those who believe life exists only on Earth, and I muse over such conceit.

Then, as I stand scratching Nellie’s head, I wonder if on those billions of other planets little innocent beings are suffering, ill, abandoned, slaughtered, and I loathe the thought because it’s clear to me that the universe, though long ago set in sublime motion, remains silent and indifferent to our pleas. The only elixir is to think of each star as one of those little children, to think of the shining moon as their vessel of love pouring over us as if to say, please, end your hateful ways.

originally published 12.14.15

photo by http://favim.com

wild

My child is a rabid animal—a brute, a beast, a demon—lunging, flailing, writhing, wailing. He screams and growls like a taunted bobcat, possessed by some dreadful tormentor. At times his mouth purses into a sickening grimace as if he's bitten something foul or rotten. In the seconds-long brevity of calm between his countless bouts of pain or madness, I recall Regan in The Exorcist, and wonder how and when my child will be released.

Our struggle lasts for over an hour. With him, in his bed to keep him safe, my wild child tears at my hair, shoves fists into my throat, throws elbows in my face, butts my head, grabs my neck, kicks me with his restless legs. My attempts at soft restraint yield us no respite. His savage fits repeat every few seconds in a viscous loop of unknown misery. Are these Cramps? Night terrors? Migraines?

I manage to give him some CBD. When it doesn't ease his distress, I give him extra, rectally. Within ten minutes the frequency of his surges ebbs, their intensity lessens. Half an hour later his rage has waned, and in my arms he begins to settle.

In the dark I lie awake for a bit, his hands clasping the back of my neck, his head pressed into mine the way he likes to sleep. Just outside his window, I think I hear a captured squirrel gnawing on its metal cage. A wild thing trapped and desperate can become insane. Are my child and I like that? Wild animals held captive? Deranged? Each by our own bleak state? I imagine straight jackets and padded cells, lobotomies and opioid pills. I wonder if these wretched episodes will ever end.

Finally tamed, my wild son and I sleep. We are safe. Still, we're living in a virtual cage.

knocking on wood

Again, I find myself crossing fingers and knocking on wood, holding onto hope that the Palmetto Harmony CBD cannabis oil we started giving Calvin last June will begin to better thwart Calvin's fits if we can just find the right dose.

After first starting the Palmetto Harmony in June after a different CBD oil had failed, Calvin went forty days without any grand mals, though did suffer a handful or more of complex partial ones. After a breakthrough grand mal, however, he never regained the same seizure freedom. We tried a CBD reboot—something some parents swear by—but had no luck. In part because of the feeling in my gut, I've continued to slowly titrate Calvin's dose upward.

The forty-day stint was evidence to me that the Palmetto Harmony held promise. We had only once before seen Calvin go that long without a grand mal, and that was when he was taking high doses of three antiepileptic drugs which wreaked havoc on his behavior. But I wanted to get a sense of what a therapeutic dose of CBD might look like, since there is really no consensus. So, I made some queries on social media, and I wrote to Charlotte Figi's mom (of Charlotte's Web fame), hoping to find out. What I learned astonished me: some children Calvin's size (sixty pounds) are seizure free on as little as fifteen milligrams of CBD oil while others take several hundred each day. The wide range might be due to the method of extraction, the kind of cannabis strains used in the oils, the type of epilepsy being treated, and the pharmaceuticals on board. In any case, I felt validated to increase Calvin's CBD oil beyond twenty daily milligrams considering he has always needed high doses of pharmaceuticals for them to be at all effective.

Today, Calvin is taking sixty milligrams of CBD oil divided into two doses—one milligram per pound of his weight. Charlotte Figi, who weighs the same, is taking nearly three times that amount and is close to being seizure free. So far, at the slightly higher doses, Calvin has enjoyed over three weeks with only one, brief, subtle event that may or may not have been a complex partial seizure, plus two grand mals, which is slightly fewer grand mals than his average for this length of time. As we have increased his CBD dose, he has seemed generally calmer, steadier, more compliant, and might be sleeping better. The most evident benefit I have noticed, however, is the speed in which he recovers from grand mals. He bounces back within hours, has been able to go to school the same day, and hasn't had any partial complex seizures in the ensuing hours and days like he usually does.

For this I am grateful, but I'll continue crossing fingers and knocking on wood, because I know how epilepsy rolls.

still here

i'm still here. just life getting in the way of blogging. enjoy the pics. i'll post again soon. thanks for checking in. xoxo

Photos by Christy Shake and Michael Kolster