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

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

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.

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.

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.

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

a hard rain's a-gonna fall

Because injustice, because tyrants, because corruption, because war, because oppression, because famine, because exploitation, because misogyny, because bigotry, because neglect, because deceit, because racism, because this year's hard rain falling on our nation, because Bob Dylan, because Patti Smith, because the power and beauty of music that calls us to think and weep, resist, ponder and dream.

Oh, where have you been, my blue-eyed son?

Oh, where have you been, my darling young one?
I’ve stumbled on the side of twelve misty mountains
I’ve walked and I’ve crawled on six crooked highways
I’ve stepped in the middle of seven sad forests
I’ve been out in front of a dozen dead oceans
I’ve been ten thousand miles in the mouth of a graveyard
And it’s a hard, and it’s a hard, it’s a hard, and it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, what did you see, my blue-eyed son?
Oh, what did you see, my darling young one?
I saw a newborn baby with wild wolves all around it
I saw a highway of diamonds with nobody on it
I saw a black branch with blood that kept drippin’
I saw a room full of men with their hammers a-bleedin’
I saw a white ladder all covered with water
I saw ten thousand talkers whose tongues were all broken
I saw guns and sharp swords in the hands of young children
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

And what did you hear, my blue-eyed son?
And what did you hear, my darling young one?
I heard the sound of a thunder, it roared out a warnin’
Heard the roar of a wave that could drown the whole world
Heard one hundred drummers whose hands were a-blazin’
Heard ten thousand whisperin’ and nobody listenin’
Heard one person starve, I heard many people laughin’
Heard the song of a poet who died in the gutter
Heard the sound of a clown who cried in the alley
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, who did you meet, my blue-eyed son?
Who did you meet, my darling young one?
I met a young child beside a dead pony
I met a white man who walked a black dog
I met a young woman whose body was burning
I met a young girl, she gave me a rainbow
I met one man who was wounded in love
I met another man who was wounded with hatred
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall

Oh, what’ll you do now, my blue-eyed son?
Oh, what’ll you do now, my darling young one?
I’m a-goin’ back out ’fore the rain starts a-fallin’
I’ll walk to the depths of the deepest black forest
Where the people are many and their hands are all empty
Where the pellets of poison are flooding their waters
Where the home in the valley meets the damp dirty prison
Where the executioner’s face is always well hidden
Where hunger is ugly, where souls are forgotten
Where black is the color, where none is the number
And I’ll tell it and think it and speak it and breathe it
And reflect it from the mountain so all souls can see it
Then I’ll stand on the ocean until I start sinkin’
But I’ll know my song well before I start singin’
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall 

Written by Bob Dylan and performed by Patti Smith