4.23.2015

harvest

She's eleven. The same age as Calvin. She's also one of the cutest little girls I know with one of the sweetest brothers, Sol, I've ever met, with the most caring and compassionate parents in the world. Her name is Harvest.

Harvest and her family lived just down the street for a couple of years and joined us at a table for sixteen one Thanksgiving. We'd see them come and go and I'd sometimes run into her mom, Brandi, at Calvin's school where she worked as a behaviorist. Nestor, her dad, was Michael's colleague in the college art department. He liked to make things with his hands, a creator of much including provocative ideas and bread, the latter of which he'd bring to us in small loaves still warm from the oven.

Sadly, the family moved away several years ago to Pennsylvania. I keep track of them on Facebook, watch the kids grow up in photos, see Nestor's creations and his students' work. The other day I got this message from Brandi:

Hi Christy,

A little while ago you posted a video of Calvin having a seizure. As I was reading your blog and watching the video, Harvest came from behind and watched too.  She was so upset and moved that she wanted to do something about it.  After waiting for good weather and lots of planning, Harvest and her friend Stella set up a lemonade stand and raised $125 for Calvin.  We just made the donation from one of your links on your blog.  Harvest thinks the world of Calvin and only wants him to get better! 

As always, we are thinking of you!

Have a lovely day,
Brandi


Reading Brandi's message and seeing the photos of the girls made me weep. I think back to when I was eleven, when I first began feeling a sense of independence. Then, I had no concept of others' needs. She's so evolved, I think, and I know why Harvest and her brother have always seemed like old souls to me: because they are and because their lovely parents show them how.

I remember the first time I met Nestor. I was upstairs in our bedroom with Calvin getting him dressed after a bath. Michael walked in with this tall man in an overcoat, long, dark curls with a twinge of gray circling his face, thick black frames accentuating the kind of hooded eyes I like so much. He smiled warmly and said, "Hi Calvin," coming in close enough for me to see the handsome gap between his teeth. He was so gentle and loving, as if he'd known Calvin—known us—for a million years, acting as though he hadn't even registered Calvin's disability, not dismissively, but in a good way. I'll never forget that moment, the best kind of first meeting there could be. I hugged him immediately.

Thinking back to Harvest and her lemonade stand, I honor all the people who donated their hard earned cash for this year's CURE epilepsy benefit, folks who helped us raise over $25,000 toward a grand total of over $120K. I recall folks who gave to the cause who barely scrape by, of family and friends who have given every single year. I think of strangers who care about our boy's precious life enough to go out of their way and set something aside. And then I think of Harvest, who has lived away for all these years, and her friend Stella who has never met Calvin. My heart melts knowing—at eleven—they decided to make a difference in our son's life, and it almost kills me with the kind of ache I think I'd have if she were my child.

Thank you, Harvest. Thank you, Stella. Thank you so much for all the love you bring into the world.

Harvest (right) and her friend Stella

4.20.2015

angus and cannabis: kings aligning the stars.

Saturday was stellar, all the stars seeming to align. Calvin was cool and calm and he behaved himself in our favorite cafe where our good US senator, Angus King (I), showed up in jeans and a fleece-lined vest, book in hand and glad, he said, to be back home from DC for a spell. I apprised him of Calvin's progress with the THCa and CBD cannabis oils, telling him that since we'd first enlisted his support over a year ago in the fight to legalize medical marijuana at the federal level, Calvin had come off of 76% of his benzodiazepine and was walking mostly without support for the first time in his life. Angus seemed pleased to hear the news, to hear the “real stories” as he put it, which were what pried him out of his self-described skepticism of legalizing the plant, even for medicinal use.

By Sunday, chaos had replaced any order we'd seen the day before. Michael was at his studio busy writing a proposal and by noon Calvin had worked himself into a frenzy, shrieking often at who knows what, even in the car where he is usually calm. Dear Lauren stopped by, breaking the madness and monotony a bit, though regrettably witnessing my exasperation, which played out in some ugly ways.

“I don't know how you do it,” Lauren said, lamenting the fact that I can't simply take Calvin and Nellie for a walk to the fields, can't garden in the back yard while Calvin plays. She knows I'm forever shielding my son's eyes from staring at the sun and making sure he doesn't careen into plant or rock or eat and choke on the sticks and bark he picks up in his fists, and that he can't sit still for any length of time enjoying toys because of the pharmaceutical drugs, and that at times I'm paralyzed by fear thinking my son might die from the ills of benzodiazepine withdrawal.

Still, a beautiful day begged us to step into its tender, ripening blades, to cast our shadows on the earth and feel the warm sun kneading our backs, and so we tried. But Calvin, suffering from the benzo wean, wanted none of it and even whined when we put him in his trike. Later, I wrote in his journal, starring each of these:

*rapid heart on way to Woody's. *red face.
*chin rash. *poor balance. agitated.
*intense.
*shrieking for hours. burps.
*super stubborn. wouldn't walk down street.
lots of fingering!!!!
SEIZURE TONIGHT?

After a tearful embrace, Lauren left and not long after his four o’clock dose of THCa cannabis oil Calvin seemed to reset, enough to stroll around the yard then down the block a bit, where I bent Woody's ear and expressed regret at not being able to stay and knock at least one bourbon back. On the way home I was relieved to see Calvin walking quite well. It made me wonder what our good Senator King might be doing to align the stars by debunking the age-old lies about cannabis, and if he's doing anything to right the wrongs and hypocrisies of corrupt powers that are working so hard against legalizing a plant with obvious medicinal benefits, a plant that is doing so much good for our son.

Calvin did not have a seizure last night and even slept fairly well, no doubt in my mind because of the cannabis, which is hard at work aligning the stars in so many of our children's lives.

Calvin outside on Saturday, Photo by Michael Kolster

4.16.2015

getting out and getting down

Occasionally, I do get out and when I see live music I get down and this time I was lucky enough to get down up on stage with Dweezil Zappa and his amazing band of crazy musicians. I had myself a good ole time. For real. Then the shit hit the fan at home with Calvin, but oh well. He's doing better and at least I got my groove on if only for one night. Thank you, Michael, for helping to right the wrongs of life.

Photo by Andy Wainwright

4.13.2015

day two-hundred-twenty-one

Sunday

Even though it is only day six since his last seizure, which is on the short end of things, I had a bad feeling. This morning, Calvin had developed a rash on his chin, had red hot ears, was dishing out more than the usual dose of stubbornness, hadn’t eaten much, went bat shit crazy a couple of times throughout the day, and his hands felt warm—all harbingers of an impending event.

I took his temp before putting him down for a nap. The rectal thermometer read 100.3, so I gave him an acetaminophen suppository just in case. I went to rest myself and before I slid into bed I turned on the baby monitor remembering a time long ago when Calvin often woke into seizures during naps, and though it has been two-hundred-twenty-one days since the last time he had a daytime grand mal seizure, he did.

Perhaps it was the sun and the way it casts its spell on his eyes, drawing them up into its hot bright light at every chance. Or maybe I made him walk too far today, the first day of the year warm enough to go outside without a heavy coat in a yard that is finally mostly free of snow and ice. Maybe it was because he hadn’t drunk enough or that he is getting sick. Chances are, though, it’s mostly due to the benzodiazepine wean, which we’ve kept at fairly steadily for the past year, though in tiny increments hoping to limit the severity of withdrawal.

It was the rustling of Calvin’s duvet that snapped me out of drifting off to sleep, and because he wasn’t making any waking sounds I knew there was something wrong. Full on in convulsions he was safely on his side, so I was able to run downstairs to grab the THC rescue medicine from the fridge. I leaped up the stairs, opened Calvin’s lips and squirted the oil inside. His convulsions seemed to stop within several seconds.

He is sleeping now, in fits and starts, and seems to have a headache, or perhaps the THC is causing his head to reel. But he’s not had any aftershocks that I can see and he’s not crying like he often does in the wake of a seizure or after we’ve given him rectal Valium, another benzodiazepine, which the THC has allowed us to avoid.

I’m sitting here on my bed while Calvin sleeps. The baby monitor is on and from here I can see outside the leaves and needles opening up to catch the sun and I think I detect a tinge of green in the lawn. Michael is on the road and so my dear friend Lauren is on her way over to dine with me and spend the night in case things go awry. I just hope we don’t end up in the hospital again like we did in February.

This shit is scary because kids can die from seizures and benzodiazepine withdrawal, which does a heck of a job exacerbating them. When Calvin awoke the first time of many, pressing his palms into his roving eyes, perhaps in some kind of partial seizure, I gathered him up, kissed his neck and cried telling him I was sorry and that I wished he’d stick around for a while longer, this kid who often frustrates me and makes me crazy and who I love with every drop in my heart.

4.09.2015

face down in the earth

The day before another April snow, I traipse around the garden nudging a shovel into the ground searching for soft earth. Piles of ice, some as high as a couple of feet, remain in pockets of shade, but amid the thaw I see tulip tips and crocus buds pushing their way up through loose mulch.

Around the bend near the front of the house I nearly step on a bird. It must have hit the window and dropped onto the grass. On first glance I think it is a chickadee, but as I crouch down to study it, I realize I am wrong. I’ve never seen a nuthatch this close up and I am surprised by its downy bluish back and fluffy chest the color of peach flesh. Its black beak is sharp, its banded eyes closed, its little feet drawn up into its chest. Hoping it might still be alive, I gently turn it over searching for a heart beat, but there is none.

In a nearby bed I find a thawed spot at the base of a tree where I begin to dig a hole a spade’s length deep, and as I do I regard the bird which rolled face down when I laid it on the dirt. I right the bird and as I carve up the ground my mind flashes to the black man in the video from the morning news, Walter Scott, who was shot at by the white cop, the eighth bullet taking him down. The officer then cuffed the fallen man and left him, face down in the earth, to bleed out. Mr. Scott was unarmed, pulled over by the cop for a broken tail light on his car.

I look at the bird and wonder about its family, its mate, and consider how quickly its life came to an end, alone on the grass and found by a passerby. As I scoop piles of dirt and damp leaves onto the bird in the hole I think about what I’ll write, wondering if I should have taken a photo, then I recall all of the shots of found dead birds Michael has taken, and so I leave the bird, gently patting down its grave.

While writing this I listen to music woven with the songs of birds. A sadness washes over me knowing the man on the ground riddled with bullets will never sing and dance with his family again. I jump when a chickadee hits the window, craning my neck to watch it zip into a nearby tree. I try to imagine how many birds smash into glass each day. Some of them survive the hit, merely grazing the panes. We don’t discover them all, but thousands must run into trouble each day, and I am reminded that it’s the same for black and brown boys and men, our American brothers, being stopped and harassed, tasered, choked and shot by white cops in a game of racial chess where blacks are pawns. The majority of hits likely fly beneath the media's radar, their truths buried under a corrupt criminal justice system. Like birds into glass, some survive the blind assault though come away stunned, while others end up face down, then at least six spade lengths deep into the earth.

Photo by Michael Kolster

4.06.2015

moon over my weary head

I wake before dawn, the moon hanging bright and low in a cold, clear sky. Its aspect alone, having recently been full, is cause for concern, seizures often nesting in the wake of the moon's apogee.

As Sundays go, the day is full, Michael’s morning crepes sweet as our happy boy. We head out to get provisions for a special dinner celebrating my 51st-and-a-half birthday, an excuse for Michael to sate my recent state of cake-on-the-brain. The Rosemont Market is open on Easter, a day we always forget, so we take a scenic drive south winding through pastures laden with mud and white slush. At the market a glut of cars chokes the road, several churches clinging to its route, so against a bitter wind we must walk our boy several blocks, remarking on how well he does. I wonder, with the moon and all, if it's just too good to be true.

With cause to celebrate and a fire in the stove, at home we crack open the beer and the bourbon early, putting a loud needle to Led Zepplin while Michael makes me a cake. It's proving to be a fine day, indeed.

By seven Calvin is in bed and our guests have arrived. I've caught a good buzz, which I don’t want to lose, and though it has been ages since I’ve been drunk—a feeling I don't adore—I pour myself another.

Over salmon and soba slathered in anchovy butter we toast the fact that the four of us are gathered around a table. We laugh and muse over the college and on writing, photography and the community of our dinky town in Maine. They sing me half of a happy birthday song before we dive into a candleless cake and, not long after we say our goodbyes, I'm happily falling asleep.

The moon low in the sky again, I hear Calvin shriek. I run to get the syringe of THC cannabis rescue oil, crawling in next to him to squirt it under his tongue and into the side of his cheeks. Within thirty seconds his convulsions stop and soon after he is asleep.

It’s day eleven and I can feel the moon, like a wave of stones, waning over my weary, worried, aching head.

Photo by Michael Kolster

4.04.2015

benzo withdrawal syndrome

This is what we are dealing with, what our eleven-year-old son, Calvin, is dealing with and it's why we spent twelve hours in the ER in February fighting stubborn seizures. He's been on high doses of benzos (clonazepam and now clobazam) for nearly eight years. In hindsight, my guess is that his seizures were never debilitating or numerous enough to warrant treating him with benzodiazepines when there were many other options, albeit problematic in their own right, to choose from (he was having about a dozen seizures each month, not hundreds in a day, a week or even in a month like some children do.) And though I thought I had educated myself on benzos, it wasn't enough, because I wasn't aware of what you are about to read below. No one told me, and my concerns about their possible side effects were assuaged by his former doctors, which is, perhaps, their custom. I found out about it when it was too late:

Benzodiazepine withdrawal syndrome—often abbreviated to benzo withdrawal—is the cluster of symptoms that emerge when a person who has taken benzodiazepines and has developed a physical dependence undergoes dosage reduction or discontinuation. Development of physical dependence and or addiction and the resulting withdrawal symptoms, some of which may last for years, may result from either drug seeking behaviors or from taking the medication as prescribed. Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis, and suicide. Further, these symptoms are notable for the manner in which they wax and wane and vary in severity from day to day or week by week instead of steadily decreasing in a straightforward monotonic manner.

It is a potentially serious condition, and is complex and often protracted in time course. Long-term use, defined as daily use for at least three months, is not desirable because of the associated increased risk of dependence, dose escalation, loss of efficacy, increased risk of accidents and falls, particularly for the elderly, as well as cognitive, neurological, and intellectual impairments.

Benzodiazepine withdrawal can be severe and can provoke life-threatening withdrawal symptoms, such as seizures, particularly with abrupt or over-rapid dosage reduction from high doses or long time users. A severe withdrawal response can nevertheless occur despite gradual dose reduction, or from relatively low doses in short time users, even after a single large dose in animal models. A minority of individuals will experience a protracted withdrawal syndrome whose symptoms may persist at a sub-acute level for months, or years after cessation of benzodiazepines. The likelihood of developing a protracted withdrawal syndrome can be minimized by a slow, gradual reduction in dosage.

Chronic exposure to benzodiazepines causes neural adaptations that counteract the drug's effects, leading to tolerance and dependence. Despite taking a constant therapeutic dose, long-term use of benzodiazepines may lead to the emergence of withdrawal-like symptoms, particularly between doses. When the drug is discontinued or the dosage reduced, withdrawal symptoms may appear and remain until the body reverses the physiological adaptations. These rebound symptoms may be identical to the symptoms for which the drug was initially taken, or may be part of discontinuation symptoms. In severe cases, the withdrawal reaction may exacerbate or resemble serious psychiatric and medical conditions, such as mania, schizophrenia, and, especially at high doses, seizure disorders.


The following symptoms may emerge during gradual or abrupt dosage reduction:



An abrupt or over-rapid discontinuation of benzodiazepines may result in a more serious and very unpleasant withdrawal syndrome that may additionally result in:


Catatonia, which may result in death
Confusion
Convulsions, which may result in death
Coma (rare)
Delirium tremens
Delusions
Hallucinations
Hyperthermia
Homicide ideations
Mania
Neuroleptic malignant syndrome-like event (rare)
Organic brain syndrome
Post-traumatic stress disorder
Psychosis
Suicidal ideation
Suicide
Urges to shout, throw, break things or harm someone
Violence

No child should have to go through this. Thank nature for cannabis, which has seemed to make all of this misery a little bit easier on our sweet little kid.

Excerpts taken from Wikipedia