stars and epiphanies

At times, particularly in the day or two before a grand mal seizure, taking care of my son is dizzying—the shrieking, the sun gazing, the mania, the insomnia, the banging head and grinding teeth and kicking feet. For the past six days I've been seeing too many stars, the blackened kind I pen in my daily journal to indicate harbingers of Calvin's impending seizures. But since I've been giving him doses of my new concentrated homemade THCA cannabis tincture just before midnight and again at three, the seizures I've expected have not yet taken place.

Eleven days seizure free is by no means a record, though it is a longer spate than of late. My gut is telling me that the THCA is doing to his nighttime seizures what it does for his daytime grand mals, that is keeping them at bay. The problem is that I loathe to be obliged long-term to waking twice a night to give Calvin medicine; to the contrary, I need more sleep.

But I've resigned myself to this regimen for now and until his next seizure occurs, which no doubt it eventually will. Then, my plan is to switch CBD cannabis oils from a 20:1 (CBD:THC) Haleigh's Hope to a 15:1 ratio. My thinking is that by giving him slightly more tetrahydrocannabinol twice a day, without having to wake at eleven and three, his seizures might abate.

And if this strategy doesn't yield the desired effect, I'll have to put on my thinking cap again and hope for the next epiphany.

Photo by Michael Kolster

how it goes

We've passed another milestone. On Monday we reduced Calvin's benzodiazepine again—a drug he has been on since he was five years old—to a daily dose of just one milligram down from an all-time high of thirty-five. At this rate—weekly reductions of just two one-hundredths of a milligram—Calvin will be completely off of it next February just after his fourteenth birthday. We've been weaning it since he was ten.

Calvin had slightly more seizures the past seven months with the exception of May, in which he had fewer when we paused his benzodiazepine wean for a bit. May wasn't the first time we've seen fewer seizures when we've let up on the speed of his wean, so my hope is that once he's completely off of the drug, his seizures might abate. I'm not despairing too much because recently, I looked back to when he was on high doses of three drugs when he was having just as many grand mal seizures, if not more (they often came in clusters) every month.

A few weeks ago we took Calvin to see his neurologist. We've only gone to him twice in four years because I pretty much manage Calvin's treatment myself. I told him about Calvin's slight increase in seizures, adding that he has had only four or five daytime grand mals since reaching a therapeutic dose of THCA cannabis oil over three years ago. When he heard of Calvin's uptick in overall seizures, he asked if I might consider going back up on the clobazam. I said no, and told him why. Then he asked if I would consider the surgical installation of a vagus nerve stimulator. I said no, and told him why. Then he asked if I would consider Vimpat or Felbatol. I said no, and told him why. I've considered those options before, and for various reasons, none make sense for our family or our child, at least not now. About the only drug I might consider trying, knowing what I know now, is Epidiolex, since it is cannabis-plant derived. Even then, I am skeptical. But before I consider putting Calvin on another pharmaceutical, I want him off of the clobazam; no more three and four-drug cocktails for my child whose behavior, most of the time, is much improved compared with what he was like on high doses of too many drugs, back when we regularly had to peel him off of the walls. Yes, we have noticed a slight uptick in seizures, but he is calmer, more focused, usually sleeps better and has much better balance. It will be interesting to see how he does with zero benzodiazepine in his blood.

Another thing I have noticed is that his number of partial seizures, which have increased during the wean perhaps more so than the grand mals, has lessened after eliminating a B6 vitamin due to toxic levels, and after reducing his CBD slightly.

I've still got a couple of tricks in my back pocket that I hope might work to thwart at least some of Calvin's seizures. One is a concentrated THCA oil I recently made using half as much oil as my regular recipe plus one milliliter of organic cane alcohol per gram of cannabis resin. This is a concept I thought of after having analyzed the hell out of Calvin's regimen mining for alternative remedies. Fairly certain that my homemade THCA oil has virtually eliminated Calvin's daytime grand mal seizures, my logic was that if I can safely give him some during nights when I feel he has a seizure coming on perhaps I can eliminate some of his nighttime grand mals. The "tincture" is concentrated so I can give him less, and the added alcohol assists absorption so there is less risk of aspiration. I've given it to Calvin the past four nights in anticipation of a grand mal, and they haven't transpired.

The other tool is on its way in the mail—a lower ratio of CBD:THC cannabis oil we use from the makers at Haleigh's Hope. My thinking here is that perhaps a little less CBD and a little more THC might decrease Calvin's seizures.

I'll let you know how it goes.

Photo by Phoebe Parker

insanity

The other morning, just before three, I heard Calvin call out to me from his bedroom which is attached to ours.

"Uh-uh," (Mama) he said, and then again, as if wanting me to come to him. By the time I reached his bedside he was in the thralls of a partial complex seizure, his lips pale, his eyes wide open. I squirted a tiny dose of THC rescue tincture under his tongue. The seizure stopped soon after, then he fell asleep in my arms, and didn't have any more. Still, I kept him home again (he missed three-and-a-half days of school last week) for a few hours while I monitored his behavior. The next day he woke up to a grand mal. It's an insanely long row we hoe, though not as long and hard as some.

Lamenting my relative lack of freedom, and while perusing social media as Calvin rested in bed, I came across a video of the carnage in the aftermath of the Las Vegan shooting, where a man killed fifty-eight innocent people gathered nearby listening to country music. The video was taken by a concertgoer carrying his smart phone as he went from body to bloody body looking for anyone who still had a pulse. One young victim had blood trickling out of her mouth, another, froth, their eyes glassy and partly open not unlike Calvin's after he's suffered a grand mal. Bodies were strewn in and between pools of blood, some crumpled together, some with folks kneeling by their sides holding vigil, while others were splayed out all alone.

I contemplated Calvin's demise if a shooter were to invade his school, knowing well that if his teachers were shot he would not know if to flee nor where to hide. It's insane to have to think this way.

When my brother called me the day after the massacre to say that he had been invited to the Vegas musical festival though hadn't attended, the hair on my skin pricked up, goosebumps covered my shins and arms imagining if one of the dead had been him. I began wondering how far Americans are going to let this type of thing go, this nation's unfettered and reckless epidemic of gun violence. When are people going to understand that owning guns makes us more vulnerable, not safer? When are we going to re-examine and understand the true intention of the second amendment? When are we going to stop fetishizing guns? When are we going to say enough is enough?

I swear our first amendment right to move about freely and safely eclipses the right to carry a loaded gun in public.

After the massacre, I heard the conservative talk show host Sean Hannity say, "You gotta prepare to defend yourself," suggesting that people needed to "get small" to avoid the rain of bullets, then insanely stating that if he had been there, he would have taken the shooter out. This perpetuation of the rash good-guy-with-a-gun narrative baffles me. I sat near Calvin, still sleeping in his bed, and began pondering other insane ideologies and hypocrisies:

The "pro-life" congressman who insists his mistress get an abortion. The folks who gripe about government assistance until they lose all of their worldly possessions in a hurricane. The people who malign universal healthcare until a catastrophic illness or injury forces them into bankruptcy. The so-called patriots who rail against Black athletes for peacefully exercising their first amendment right to free speech. The voters who elected a reality-show POTUS yet want comedians to shut up about politics for their lack of expertise.

Watching my seizure-ish boy sleep, I imagined the grieving mothers and fathers who lost children in the Las Vegas shooting, thinking maybe the tragedy will motivate congress into passing sensible gun-control legislation. I've heard that doing the same thing while expecting a different result is the definition of insanity. I can only hope that we're smart enough to sack those in the Capital who are no doubt certifiably insane.

Photo by Phoebe Parker

birthday gifts and ferris wheels

Though it began with my son having a grand mal seizure, my fifty-fourth birthday became a treasured one. Dear friends from my childhood growing up in Seattle sent me messages. Family members from afar, and homies nearby called to sing me the birthday song. Michael came home early from work and took care of Calvin while I did a little bit of writing, then showered.

Though I was dying to nap, by afternoon—thanks perhaps to cannabis—Calvin had rebounded from his seizure well enough to take him for a ride in the car. We headed up the river to Lisbon Falls, past Michael's new photo studio up to a favorite place called the Big Dipper where I got a hot fudge brownie sundae, a treat I hadn't enjoyed in years. Calvin sat on the picnic table bench—something he wasn't able to manage just a couple of years ago—while Michael spoon-fed him some of his coffee-oreo "noreaster."

Since Calvin continued to do pretty well, we went to the dvd store and rented The Princess Bride, my choice for something light to interrupt the nagging sorrow from recent events in the news and at home. At the grocer, Calvin was compliant and walking strongly and steadily as ever, a gift in itself.

At home, Lauren dropped in for cocktails, followed by Lucretia who arrived with a lovely bouquet of flowers and a basket full of heirloom tomatoes, poblano peppers, broccoli, onions and greens from her farm.

Later, Michael and I opened a delicious Bandol given to us years ago by our lovelies Steve and Gretchen, and with it toasted another spin around the sun. Glasses in hand, we stood outside in the dark, arms around each other while hot, bright flames seared a thick ribeye. When the smashed-potato fries were sufficiently crisp and the steamed asparagus tender (all Michael's doing, of course) we sat facing each other at our butcherblock bar listening to Dire Straights and The Police on vinyl. As we ate, I opened cards, each one with a sweet birthday greeting that made my heart ache missing loved ones. The last one I opened was from Michael's aunt. A photographer in her own right, her handmade cards always include one of her photos pasted on the front. The image on the card, taken from high on what appears to be a ferris wheel, moved me unexpectedly and deeply. A flood of emotion gushed out in a tearful mix of exhaustion, sorrow, regret, love and gratitude. From her perch, she had aimed her camera at a boardwalk carnival and caught a bird's-eye view of striped canopies atop carousels, white umbrellas, kiddie rides, people milling about, and a roller coaster, something which, though it's my favorite ride in the world, I haven't ridden in years. Beyond the midway stretches a vast beach peppered with hundreds of sunbathers and beyond that, at the top of the photo, the teal open ocean. The scene she had captured for me was an enormously rich and vivid world—one beyond my reach physically—expressed in a simple five-by-seven photo.

I released all the tears that were in me, so grateful to—from my relative confines as the mother of a disabled and chronically ill child—be able to experience a new place and imagine myself smelling cotton candy and sea mist, hearing the surf and the gleeful shrieks of excited children, feel myself dart and weave in the salty breeze between happy carnival goers. What a gift to see the outside world on my birthday, from up high on a green ferris wheel.

flowers from Lucretia

soul collage

This morning at six-thirty, my fifty-fourth birthday, I was awakened by the chilling scream of my child going into a grand mal seizure. Its spasms were more violent than usual and it seemingly lasted slightly longer. When it was over I crawled in next to him. There, I am able to hear his heartbeat through the pillow. Not long after he had fallen asleep I sensed his heart rate quicken. No doubt in my mind he was about to go into a second seizure, so I grabbed the syringe of THC rescue tincture and squirted it under his tongue, successfully thwarting another one.

This, the fourth day of various kinds of seizures within six days, finds me weary. Somber weather matches my mood, and yet I am thankful for the rain that is drizzling on trees and shrubs so deprived of water that they've curled up into themselves.

Later, while still in my robe, a knock came at the door. Michael had already left for a day's work. In came my lovely Lauren with a bouquet of flowers from her garden—zinnias, snapdragons and geraniums in the juiciest of colors. In her other hand she held one of her creations, a soul collage, in which she pastes cut-outs from glossy magazines, arranging them in space on a two-sided card wrapped in cellophane.  

A mere glimpse of the collage got me to me weeping, just seeing the boots, a nod to my many pairs, in particular to the pointy-toed studded ones—ass kickers—Lucretia gave me. Lauren had included a woman in rolled up jeans—the way I like to wear mine in summer—reading a book against a backdrop of birthday candles and an autumn scene complete with the acorns so profuse in these parts during early October.

She embraced me as I wept. Over her shoulder I studied the backside of the card which features an auburn-haired woman surrounded by flowers, another sitting on a throne of pillows, her hand on a bow as if a warrior, and a third woman standing on a large ball juggling six smaller ones. In the make-believe room, there are books and baskets and ornamental rugs and a familiar pair of French doors leading into a canopy of trees. I was deeply touched by Lauren's thoughtfulness and insight expressed in her postcard homage to me, my life and my home, a place I often feel stranded in, and yet one I am reminded to be most grateful for.

birdies

Recently, Michael bought me a glazed ceramic bird bath, its bowl the shape and texture of a sunflower, to put in the garden just outside the window from where I do my writing. It took a while for the birds to discover it, but now I'm seeing creatures frequent it at certain times of day—chickadees, jays, bees, cardinals, squirrels—no doubt very thirsty from a drought-stricken summer and autumn.

One of my favorite birds is the robin. Scads of them lived around where I grew up. I know their familiar chirp, and when they arrive here in Maine when snow is still on the ground, I'm heartened knowing spring is not far away.

The past few days I've seen a baby robin appear, one with a white ring around its eye. Though it's nearly full-grown, when its mother is near it hunches down, opens its mouth and flaps its wings for feeding. My boy Calvin also tips his head back—mouth open—when he wants me to spoon in more of his favorite foods. He's my little birdie, albeit a thirteen-year-old one in an elfin body whose happy chirps and hurtful cries still sound so much like a toddler.

On strings of days like these when I'm mostly trapped indoors with my seizure-ish child, I pine away for nature, to be outside, to be therapeutically immersed in sun and sky and green and clouds. Thankfully, our house is graced with lots of windows on all sides, so I've got plenty of vantage points from which to observe nature's goings-on—wind ruffling the leaves of the Japanese maple and rippling the water in the birdies' pool, squirrels skittering up rough trunks, bees humming around blushing hydrangea blossoms, woodpeckers scaling trees upside down searching for bugs.

Still, I can't shake the feeling that I'm missing something, that life is passing me by as I while away indoors being my son's nursemaid. I wonder if I'll ever get back to San Francisco or Seattle. I wonder if I'll ever again see Paris or Rome, Istanbul or Rio. I wonder if I'll ever again be able to venture into lands unknown. And if I do, what might that mean for Calvin? Will he be with me? Gone? Neglected in some group home?

But for now I'll have to be content here while watching the robins, perhaps letting them take me along—in my mind's eye—as they soon start traveling south.

(gun) senseless

senseless: no doubt, my disabled child and his missing white matter, his rampant seizures, his drug side effects, his suffering, the senseless loss of what might have been a normal life for us.

senseless, too: lost lives. murdered child. automatic fire. gunman punching out windows. shooting into crowds. bullets flying. innocents ravaged. ambulance rides. bloody emergency rooms. NRA sham. government bribes. impotent legislators. cowards. disingenuous, derelict representatives. greed. thirst for power. reckless defenses of our second amendment. motherless child. childless father. wifeless husband. widowed bride. hazardous propaganda. false freedoms. risky inaction. senseless weaponry fetishized. our first amendment rights defied.

Bang Bang (I cannot second your amendment) by Holly Ballard Martz