6.22.2018

longest day

The longest day of the year was followed by one of the longest nights of the year for Calvin and for me and Michael.

A few hours after I had come home, giddy from attending my dear friend Lauren's annual summer solstice party, Calvin began to whimper and stir. I got up to give him his second dose of THCA cannabis oil having earlier expected an impending seizure. Within half an hour he was beginning to writhe, rub his head and cry. I gave him a tylenol, then when that didn't work, I managed to get him to swallow an ibuprofen. Despite my efforts to assuage his pain, he continued to thrash and cry and scream. In bed next to me, he pulled my hair, scratched my neck, pushed my throat, whacked my head, kicked my legs again and again and again. Somehow, I was able to maintain my composure as he flailed for two-and-a-half hours, promising him in whispers and kisses that he'd feel better soon and that I wouldn't leave him. 

It was then that I again thought about the Central American child refugees separated from their parents, some of them infants, others toddlers, left crying alone with no consolation, children who don't understand or speak English, don't understand why they've been marshaled away from their parents by strangers, children who might never be reunited with their momas and papas for weeks, months, years—if ever—the damage and suffering being done in haste by a president and his administration without a plan of action in place.

Yesterday, I heard an audio of young detained children, one of them crying "Papa!" repeatedly, until his/her little voice became hoarse. Hearing their cries made me weep.

Finally this morning, my boy calmed, though never went back to sleep. We eventually got him up, fed him some breakfast, packed his lunch and sent him off for his last day of school. A few hours after we had put him on the bus I got the dreaded call while paying for a special cake I was about to bring to his support staff at his school: Calvin was having a grand mal seizure. His ed tech's voice was trembling as she described how he had vomited during the seizure, fearing he might aspirate. I told them that I'd be there soon. 

On my way I stopped by home and quickly filled two syringes with cannabis oil. Thankfully, the junior high school is less than a mile away, so I was able to give him the oil within minutes of his seizure, a tactic I take aiming to prevent further seizures.

As Calvin slept, his teacher and aides sat with me in the dim Zen Den, named for its bean bag chair and strands of calm yellow lights strung on the walls. As we watched my boy sleep, I told them of past seizures, most notably the forty-five-minute grand mal he had when he was just two. I described how Michael and I had thought he might die that time since none of the emergency meds had appeared to be working, but that it had finally stopped when we began kissing on him.

After almost an hour's sleep on a spongy floor mat, Calvin stirred and awoke. I gave him his lunchtime Keppra, chasing it with a couple of sips of water, then picked him up and carried him out to the car.

Now, as I sit at my desk writing, I can watch him spin in his industrial-strength johnny-jump-up. He is poking his eye, humming, and bubbling up foamy drool. My gut tells me he isn't out of the woods yet, and I wonder if I'll ever get my seizure-free boy back from where these sinister meds and fits took him years ago.

Then I think again of those innocent migrant children separated from their parents, every day their longest day, every night too, their lives likely ruined by the mistreatment this neighboring and prosperous nation has subjected them to. I wonder about the hundreds who have epilepsy (one in one-hundred of us do), wonder how they will fare without their meds, wonder who will hold them when they seize, wipe the blood trickling out of their mouth from bitten tongues, wonder who will whisper away their fear, their pain and tears. I wonder how the reckless president sleeps at night, he who has told his citizenry legions upon legions of lies, the worst of which, perhaps, denies the real grief and suffering these children are having to endure. The potus (the guy is not deserving of all caps) may not sleep well, but he doesn't sleep on a mat or a cot with a mylar sheet under banks of cold florescent tubes in a cavernous, cement-floored, fenced-in holding cell. But I bet he sleeps alone.

And as I wrap this up, my sweet innocent boy rolls into another grand mal, but in the safety and love of his mother's arms in a place we call home.

Calvin after a seizure

6.19.2018

leaving home

Every day I hear or see something that reminds me how much we, as Americans, take for granted in this place we call home. 

Yesterday, the reminder was a social media comment about refugee and immigrant children being torn from their parents—even an infant suckling at her mother's breast—and being thrown in cages and behind detention fences. An acquaintance posted her opinion on the matter saying, "A loving mother would not put her child in the situation that would cause them to be parted. A selfish mother would play that game."

Her comment reminded me of those contemptuous folks who love to throw around the flabby platitude, race card.

I told her that if she spoke to some of the mothers fleeing other nations she would learn how wrong she is.

Later, while I was watering a parched garden, it occurred to me how spoiled some of us living in this nation are. We enjoy so many luxuries people in other countries only dream of—indoor plumbing, heated homes, fifty-seven million kinds of breakfast cereals, chips, wine, beer, coffee, tea, candy, cheese to choose from. Many of us have pets, cars, bicycles, warm clothes, cozy beds, doctors, medicines, computers, smart phones, jewelry, handbags, toys, sports equipment, table linens, gas stoves, porcelain sinks and bathtubs, pillows, wool blankets, shoes for every occasion, safe streets, good hospitals, nice restaurants, decent schools. Even so, we hunger for the newest apps, trendiest fads and latest gadgets.

What seems clear to me is the abysmal lack of imagination and compassion in the minds and hearts of those who condone the hasty and horrific separation of children from their parents—families who have left their homes and communities risking their lives to make it to a nation where life might be safer and better for their families. 

As with most trying situations, I think of Calvin. I imagine living in a country where Calvin has no access to medical care or treatment for his seizures. I imagine his epilepsy burning out of control and bringing him to the brink of death. I imagine a neighboring and prosperous nation offering great promise in treating his condition. What would I do? Might I risk fleeing to that land for the sake of my child's life? Perhaps I would. 

I then imagine living in a war-torn country where good people are extorted, children are regularly kidnapped and forced into sex work, gangs and militias, where mothers and daughters are raped, where food and water are scarce, where neighborhoods are gassed and shelled, where men are murdered, where homes and towns are burned to cinders. Might I leave home with my children to a neighboring and prosperous nation, leaving everything behind and risking it all for a chance at living free from fear and near-certain peril? Yes, I think I would.

When having a similar exchange on social media last year, a friend told me that he would not be a refugee because, "it is not in his upbringing or heritage" to do so. He went on to explain that he would not flee his homeland, but instead would remain to "make it better." Perhaps it is easier for folks to imagine this strategy having had no children. Or perhaps some suffer from an inability or unwillingness to imagine the grim reality of living in a war zone. Or maybe there are other factors which, though I've racked my brain to unearth, convince some that protectionism in the form of cruel and unusual treatment of children is how we as Americans should roll.

Today I read my friend's blog, a moon worn as if it were a shell. In it she posted a poem she'd read on another blog. She asked her readers to pass it on:


Home

no one leaves home unless
home is the mouth of a shark.

you only run for the border
when you see the whole city
running as well.

your neighbours running faster
than you, the boy you went to school with
who kissed you dizzy behind
the old tin factory is
holding a gun bigger than his body,
you only leave home
when home won't let you stay.

no one would leave home unless home
chased you, fire under feet,
hot blood in your belly.

it's not something you ever thought about
doing, and so when you did -
you carried the anthem under your breath,
waiting until the airport toilet
to tear up the passport and swallow,
each mouthful of paper making it clear that
you would not be going back.

you have to understand,
no one puts their children in a boat
unless the water is safer than the land.

who would choose to spend days
and nights in the stomach of a truck
unless the miles travelled
meant something more than journey.

no one would choose to crawl under fences,
be beaten until your shadow leaves you,
raped, then drowned, forced to the bottom of
the boat because you are darker, be sold,
starved, shot at the border like a sick animal,
be pitied, lose your name, lose your family,
make a refugee camp a home for a year or two or ten,
stripped and searched, find prison everywhere
and if you survive and you are greeted on the other side
with go home blacks, refugees
dirty immigrants, asylum seekers
sucking our country dry of milk,
dark, with their hands out
smell strange, savage -
look what they've done to their own countries,
what will they do to ours?

the dirty looks in the street
softer than a limb torn off,
the indignity of everyday life
more tender than fourteen men who
look like your father, between
your legs, insults easier to swallow
than rubble, than your child's body
in pieces - for now, forget about pride
your survival is more important.

i want to go home, but home is the mouth of a shark
home is the barrel of the gun
and no one would leave home
unless home chased you to the shore
unless home tells you to
leave what you could not behind,
even if it was human.

no one leaves home until home
is a damp voice in your ear saying
leave, run now, i don't know what
i've become.

~ Warsan Shire

I don't know what the answer is to our immigration dilemma. I do know it is wrong, harmful and dangerous to separate these children from their parents. And though I am not Christian or religious, I dig what Jesus preached and do agree with every word that Father James Martin has to sayWe need to show humility, love and compassion for those fleeing the scourge of gangs, extortion, murder, rape and starvation in neighboring and faraway nations. They are our fellow human beings. At the very least they deserve loving kindness and dignity.

6.14.2018

twice in a new moon

Skies opened up and I awoke. Rain beat down. I could hear my boy slap the wall between our rooms. We'd gone to sleep just before noon. What I had thought was a mere blink had actually been two hours. I dragged myself from bed with little strength, the days' exhaustion still lurking in my muscles and bones.

My boy had seized three days ago after having suffered an unsettling weekend and not long after a previous fit. Then, on the new moon, he slept all day at school. I analyzed the hell out of it all, wondering what to do.

Did he suffer a concussion when he fell out of bed on the nurse's watch, landing on his head? Is the extra magnesium causing a problem? Is he suffering a bout of benzo withdrawal? Might he be outgrowing his Keppra? Is he going through a growth spurt? Is he getting sick? Is his epilepsy progressing like I heard it can do?

As the deluge swept pollen into opaque yellow streams, I went to him and he smiled at hearing me. Seemed happy as a clam. The night before he'd seized again just after he went to sleep, his nighttime meds not having had a chance to kick in yet. Still, an unusual time for him. I'd been at dinner with a friend. I'd jumped when the phone rang. I resisted the urge to go home, knew Michael could handle whatever went down.

When I arrived home, my body still buzzing from moving to a live theater performance of the earliest songs of rock and roll, it was quarter past ten. I crept upstairs, pulled back the netting on our son's bed and squirted a dose of THCA cannabis oil between his lips. He stirred but did not wake. I repeated the task at two a.m., but at four he nonetheless woke to a partial complex seizure, heart pounding in his chest, Michael next to him. I gave Calvin another dose of oil and went back to bed.

Twice in a new moon my son seized. Thrice this week, making eight grand mals in a months' time, when one is one too many.

The skies, having gone blue for a spell, are darkening again. Bark is black. Grass is wet. My kid is eating and drinking again. I'm waiting to hear back from his Primary Care who fields my many queries about anything. I'm tempted to discontinue his magnesium; perhaps less is best. For now, anyway, we seem to have our son back—our drooly, animated, restless, affectionate boy who keeps us up at night when we should be sound asleep in bed.

Photo by Michael Kolster

6.12.2018

riding the wave

At times he seems famished. At others, averse to eating altogether. My fourteen-year-old boy Calvin cannot tell me when he is hungry or thirsty. I have to guess, do trial and error, sit him in his chair to see if he wants to eat something. Even then, my boy is so restless due—I believe wholeheartedly—to his eleven years of taking benzodiazepines and the heinous and protracted effects of their withdrawal.

I wonder if we'll ever get my calm child back. I hope with every fiber of my being we do. But my sense is that my son has been ruined. Ruined less by seizures, I wager, than by pharmaceuticals, most notably the benzodiazepines which doctors prescribe so cavalierly—often ignorantly—for epilepsy, anxiety, muscle relaxation, and insomnia.

When Calvin was an infant, before he began having waves of seizures—at least obvious ones—and when he wasn't suffering from gastrointestinal distress or nervous system overload (he was born six weeks early with an idiopathic absence of a significant chunk of his brain's white matter) he was a calm child. He nursed peacefully, sat in Michael's lap happily, was content during walks in the stroller, sometimes bundled up against twenty-degree temperatures, sat patiently in his bouncy chair as we fed him, laid still in bed with us and on blankets in the summer shade. But at age two, when the seizures began, so did the meds. And when the meds began, as early as his first dose we saw him change and morph into the amped-up child we see today, and most particularly since the advent of his first of two benzodiazepines, Klonopin, when he was just three years old.

Michael and I are trying to ride the somewhat recent wave of more frequent grand mal seizures of late (he had one last night on day five), plus a string of days watching Calvin perseverate—finger snapping and rubbing, repetitive humming, jaw clenching, sun staring, disengaging—hoping he is "simply" going through a bout of benzo withdrawal that will soon dissipate. But it is scary to see Calvin in this kind of place; I worry that he'll get stuck and never change or improve, dread that my kid will never get back to his baseline functioning. After all, the drugs have ruined him before, kept him from returning to his best self behaviorally; it has been over a decade since I've seen and held that calm child.

But what do I know? Perhaps he is exhibiting sub-clinical seizure activity. Maybe he has a tummy ache. What kind of role are pubescent hormones playing? Somehow, though, I doubt these are what's at major play; my gut tells me the drugs are the culprit. In any case, we'll just have to ride this wicked wave and see.

6.10.2018

the nature of control

gorgeous morning. garden busting. the trees, shrubs and flowers innately know when and how and what to do. inside the house my agitated child spins, shrieks, whines, stomps and grinds. i don't know why. he has no way of letting me know. perhaps he has no clue as to the whys of his woes.

these greens know just when to blossom; their purples and reds show their glory in concert. the whites, too. they close themselves up when it's too hot or cold. drop their spent petals when when their blooms begin to decay, when they are done with their ravishing display.

my son on the other hand cannot control much of what he does. he paces. wanders. seeks the sun, simultaneously wilting in its embrace. he is virtually unable to void his bowels without manufactured aid. cannot use a spoon. at a loss to ask for help.

perhaps my thirst to control nature stems from what i cannot sway. i dig and plant and mulch and prune. i bonsai shrubs and trees to keep them small. i clip limbs to open things up.

i wish so much to stop his seizures. i wish my boy could speak to me. i wish he felt better than he does much of the time. mostly agitated, irritated, restless, manic, achy, weak, frustrated, hurting, seizing. he lives in a drought of health and wellness. forever stressed by what his brain does and what his body cannot do. his mind's white matter never fully formed, the bud of it pinched or crimped somehow, never to fully bloom.

6.07.2018

fmt etc

It really is a terrifying sound, particularly considering it comes from my sweet little boy. Calvin's grand mals, which usually emerge in the wee hours of the morning, begin with a blood-curdling gasp-scream-cry, ripping me out of deep sleep into hyperspeed.

Though Calvin is having fewer monthly seizures overall, they continue happening with lamentable regularity. He usually has at least one grand mal per week, though in the past six months he's had small clusters of them which increase his monthly total. Thankfully, his complex partial seizures have diminished greatly since January; in April we saw only three and in May Calvin had just two. And though he's had what amounts to thousands, his seizures are still alarming.

Yesterday, after his seizure at 4:40 a.m., we kept him home from school again and from joining his classmates on a rare field trip aboard a train headed to the next town south of here. It would have been his first time riding a train.

Calvin misses so much of what life has to offer.

I spent part of the day—between shadowing Calvin, encouraging him to drink liquids, giving him suppositories and changing his diapers—further researching fecal microbiota transplants (FMT), an emerging treatment for diseases such as Crohn's and for neurological disorders such as autism and epilepsy. I had come across a clinical trial being conducted at China's Nanjing Medical University, and had written its principal. She/he wrote me back saying that the study is ongoing but that it appears that FMT will likely be helpful in controlling (perhaps curing?) some people's epilepsy. I also read an account last week about a girl whose seventeen-year battle with epilepsy ended when her Crohn's disease was treated with FMT and her seizures stopped.

When I wrote to Calvin's neurologist inquiring about prescribing FMT his response was, not surprisingly, what I'd describe as skeptical. Fully anticipating such a response I had also contacted Calvin's primary care provider, Katie, who is a badass nurse practitioner. Not surprisingly, later that same day she spoke with a colleague who hooked her up with a local gastroenterologist who had previous experience using FMT at Boston Children's Hospital. I am eager to hear back what our options for treating Calvin might be. No doubt I am going to push for this since so many pharmaceutical antiepileptic drugs have failed him, and if FMT doesn't stop his seizures, maybe it will help his digestion, reduce his constipation and perhaps improve his behavior.

In the meantime, Calvin went to school today. I'm sitting here in front of a fire in the wood stove because it is a raw fifty-five degrees outside. My in-laws left yesterday morning. We had a wonderful visit full of interesting, sometimes intense, conversations about politics, family and aging, benzodiazepines and opioids. I am deeply grateful for having such caring in-laws who regularly uproot themselves from the comfort of their Florida home to come visit us since we cannot legally board a plane carrying Calvin's cannabis oil. But with each passing year, as they inch toward their early to mid-eighties, the trips get harder for them, so I hope soon medical marijuana will be decriminalized so we can travel freely without fear that Calvin and/or his cannabis oil will be confiscated.

One last update: I'll soon be making a new kind of THCA cannabis oil using a relaxing indica strain rather than a hybrid for giving to Calvin at bedtime, hoping it will quell his nighttime seizures. As always, knock on wood and cross your fingers and toes.

Calvin and his buddy Gpa

6.03.2018

what's going on

My out-laws are in town, so I might not be posting for a couple/few days. Suffice to say we are most grateful for their annual-plus visits considering they live in Florida and we can't board a plane without risking Calvin's cannabis oil being confiscated by the Feds, or worse.

Calvin is doing okay after a pretty shitty May seizure-wise, at least in terms of total grand mals. I'm investigating another option that might help improve or eliminate Calvin's seizures: fecal microbiota transplant (FMT). I read of FMT a couple of years ago when it was first being used to treat autism. I never followed up because we were in the thralls of a four-year benzodiazepine wean and treating Calvin with a homemade THCA cannabis oil. Recently, Calvin's kick-ass nurse, Rita, reminded me of FMT. This morning I googled it and found a case of FMT curing a person's epilepsy who had been treated initially for Crohn's disease. I also came across a trial of FMT for use in treating epilepsy. I wrote to the study's sponsor at Nanjing Medical University in China, where the study is said to have wrapped up in March. I emailed Calvin's neurologist this morning inquiring about the method and if it is something we can do here in Maine.

So that's what's going on. Until Wednesday, I'll be hanging with my homies, Calvin, Michael, Ma and Pa Kolster in the mild June of Maine. But I'll be thinking of all y'all, hoping to write again soon.