11.30.2015

onto something: cannabis and gaba

Seven minutes had passed by the time we saw the world flood back into our son’s eyes, seven miserable minutes until we were sure his seizure was done. Even after all these years it never gets easier to see him get sucked into an epileptic vortex.

At bedtime, having sensed the looming fit, I’d given Calvin two times his normal dose of homemade THCA cannabis oil, which seemed to postpone the seizure’s onset until after midnight, though didn’t halt its approach. When the convulsing finally stopped, I gave him another full dose, squirting tiny bits into his mouth between swallows. Thankfully, the oil seemed to prevent a subsequent attack.

Every time Calvin suffers more than one seizure in a single night I try using a new strategy, hoping to solve the puzzle, escape the conundrum, thwart the assault. Several daily doses of THCA oil appear to work well to curb his daytime seizures to a great extent—he has had only one daytime grand mal in 451 days. Sadly, though, this month has been a bad one for our boy, having had seven grand mals at night and a cluster of about a dozen partials, making it his worst month, seizure wise, in years.

Despite this setback (I should emphasize here my suspicion that it’s due, at least in great part, to a difficult benzodiazepine withdrawal) my husband and I remain hopeful. Since augmenting Calvin's cannabis oil regimen with various supplements in recent months—zinc to suppress the excitatory neurotransmitter glutamate and improve his body’s production of GABA, the body’s chief inhibitory neurotransmitter that Calvin’s body is craving due to the difficult and protracted benzodiazepine withdrawal, vitamin D to aid calcium absorption to help remedy Calvin’s osteopenia (which was perhaps caused by years on a failed ketogenic diet and/or side effects from some of his antiepileptic drugs), a daily probiotic to improve digestion, immune function and GABA production, and P5P (the active form of vitamin B6) to aid in the production of GABA as well—we’ve seen him make strides. Besides the disappearance of daytime grand mal seizures, we’ve seen Calvin have far fewer and less intense viruses and infections, seen him sleep better and lose much of his stubborn refusal, seen his stamina and behavior vastly improve, seen him drool less, seen his persistent chin rash disappear and, perhaps best of all, in the absence of spoken language he is now able to employ various signs, albeit some emergent, for the words hug, all done, more and eat—thanks to the hard work of his aide Mary.

In other words, Calvin is coming back to life again after some years as a lethargic zombie followed by many years as a raving lunatic, both phases I've no doubt resulted from the mind-warping pharmaceutical antiepileptic drugs, the main band-aids used for treating epilepsy.

It is too early to know, what with so little research, what cannabis might be doing to my son’s brain. But lets be honest, the disclaimers drug makers put on nearly every antiepileptic drug admit to as much—that they don't know exactly how they work. What I can say is this: Calvin usually has four or five grand mal seizures a month and, sometimes, a handful of partials—this in the face of an active withdrawal, having reduced his addictive benzodiazepine, clobazam, by nearly ninety percent. He is taking only one other antiepileptic pharmaceutical drug, Keppra. There was a time when Calvin was on the ketogenic diet plus very high doses of three or four pharmaceutical drugs at once, yet he was still enduring a dozen or more seizures most months, not to mention suffering the drugs' deleterious effects on his behavior, stamina, focus and development.

We're not out of the woods yet, but I’d say we might be onto something with this cannabis-GABA thingy; at least I can always hope.

Photo by Michael Kolster

11.29.2015

tree of life

The nuns taught us there are two ways through life—
the way of nature ...
and the way of grace.
You have to choose which one you’ll follow.
Grace doesn’t try to please itself.
Accepts being slighted, forgotten, disliked.
Accepts insults and injuries.
Nature only wants to please itself.
Get others to please it too.
Likes to lord it over them.
To have its own way.
It finds reasons to be unhappy ...
when all the world is shining around it ...
when love is smiling through all things.
They taught us that no one who loves the way of grace ...
ever comes to a bad end.


—Spoken by a mother grieving the death of her son, from the film The Tree of Life, by Terrence Malick

To me, Grace and nature are one in the same—no way to separate them. Nature’s universe encompasses all—the rocks, the rivers, the forests and deserts, birds, animals, fish, earthquakes, tsunamis, tempests, light, energy, the clouds, stars, planets, galaxies, black holes and supernovas. Nature does not discriminate between the healthy and the sick, the good and the bad, the wealthy and the poor, the devout and the secular.

Mindful of that, I can accept my precious boy who, through nature's indifference, became less of what he could have been yet more of what he is: loving, seemingly cognizant of little, living in the moment, wordless, wanting only essentials, simple, pure, changing with the passing of time, yet not changing at all. Like a tree whose limbs are beautifully twisted and gnarled by ages of drought, freezing and the peril of storms, covered in soft lichen as if jade lace stitched onto a taffeta gown, Calvin’s beauty is one of a kind, touching, timeless, makes me tremble at times.

And if I must one day see him go first, if his time here will be only fleeting, I can feel at peace knowing he’s returned to that from which he came—the earth, the sky, the moon—and I’ll carry him around as I had once before, as if he is my heart's inner star and soul's universe, and just as much as he is now, he’ll continue to grow inside me like a little tree of life.

Photo by Michael Kolster

11.26.2015

so grateful for

thanksgivings. opening our home to others. running water. the knock and ping of radiators. pumpkin pie. autumn crops. red wine. rain. wooden floors. generosity. the orange glow flowing from twilight windows. embracing. moms and dads—those alive and ones who’ve passed. espresso. the smell of burning embers in a cold mist. moonlit walks. bodies of water. rain. a space for contemplation. gatherings. constellations. art. sidewalk strangers. this spot on the earth. candles. dogs and children and turkeys, not necessarily in that order. the light-play and shape of naked trees. a space for making. laughter. relative health. cake for breakfast. crushing acorns. music. the smell-taste of bacon. homemade cannabis remedies. quiet streets. birds. cooking with gas. bourbon, of course. old friends dropping in as if they’d never left. rolling flames. neighbors. seizure-free days. furry dogs. husband. son.

Photo by Michael Kolster

11.24.2015

just a little person

Loving this song and thinking of my boys.

  
Just a Little Person written by Jon Brion and performed by Deanna Storey. Video by Diogo Correia

11.23.2015

rain and moon, refugees and stones

I don’t care that I’m getting drenched, that rain is dropping on my face, clinging to my lashes, nose and chin. I'll be dry and warm soon. Out here, the air is fresh and clean, so I take it in as most I can, so much so I feel it in my fingertips. I walk past the same candlelit house I ducked into last night, unannounced, where I gave everyone a hug, sat on John’s lap and gave his husband Mark a kiss, where Luz and Marcos tried to serve me up a glass of wine and a dish of food, and where Lauren sat, smelling of the roses reflected in her cheeks.

All these wonderful people in such a small place, I thought, grateful of my tight-knit town of gay and straight, black and white and brown, Guatemalan, Mexican, Native American, Somalian, French-Canadian, Asian, European, Californian, New Jerseyan, young and old—the list goes on.

This rain is cleansing, particularly to my soul, which I leave open and unguarded. Some might warn me of an assault, my heart some kind of guileless target, but instead, its spongy muscle is sopping with love and compassion for that which some regard as other.

Did Calvin teach me this?

On my walk home in the dark, raindrops dancing in puddles like electric ants, I consider the recent vitriol spewing from the mouths of those with hardened hearts filled with hatred fueled by fear and ignorance. How difficult is it to imagine our ancestors’ families fleeing to this land to escape persecution, war and famine? Why do some of us feel so entitled to hoard this chunk of earth we like to call our own? Why are some so quick to blame those who look different, speak a different tongue, wear different clothes? Can't people realize we all come from the very same cosmos? All of us—the world over—love our children, love this earth, love each other. Every faith and culture has its fanatics, even Christians.

If there is a God, might there be just one?

Looking up, the clouds begin to break and the moon peeks through—the same moon illuminating hungry refugees drenched inside their tiny boats, shivering in the same water that will touch these shores, the same moon which glows off the faces of frightened children, weary mothers and desperate fathers who have fled a plight worse than we can ever know, while my Calvin sleeps in a cozy bed, safe and warm.

As the rain falls, now mere drops from the bows of trees, a dark stranger in a hoodie draws near. I tell him not to fear my dog, that she is friendly. A handsome, swarthy face peers out into the streetlight’s beam, his young smile reflecting mine. I assume he is a college student on his way home or to the library to read.

“I thought she was afraid of me,” he says with a foreign accent and a sparkle in his eyes while reaching out to let Nellie sniff his hand.

My impulse is to invite him to Thanksgiving. I chuckle and wish him goodbye, so grateful that he, and others like him, have come to this most homogeneous state, have graced my presence and enriched this town, its faint mélange my salvation. And in my effort to find metaphor I think of those refugee boats, of oars, of life rings and savers. Then, I think of the rope that pulls these boats ashore, strong because it's braided with different fibers, each relying on and bracing its neighbor, and in case one strand breaks, the rope maintains integrity. The same goes for the fabric of society; our history of immigrants, of refugees, has made our nation what it is, which, though not perfect, is great in so many ways.

And we mustn't ever forget upon whose captured backs and bloody sweat this very nation was shaped: the slaves.

The rain hasn't ceased, it has just moved on and soon will be drenching the backs of children who have no dry clothes, no food, no shelter, no country to call home. And yet some of us, in our warm castles and in glass houses, are bent on building walls, fueling fear and hate, blaming others, and throwing stones.

11.18.2015

epilepsy's conundrum

I wrote in Calvin’s daily journal last night at six, “CALM (suspiciously).” I should have heeded my suspicions and given Calvin that extra dose of THCA cannabis oil at bed, but I didn’t because he was so calm and had seemed to get past some of the seizure omens which I typically use to gauge these sorts of things. After all, I don’t want to over medicate my kid if I don’t see the need, even if it’s just with weed, but then again I'd do almost anything to save my son from even one seizure. That's one of epilepsy's conundrums.

Just after six, I kissed my son and my husband goodbye and patted Nellie on the head, then swung by Lauren’s to pick her up for a bite to eat and a drink. We saddled up to the bar, sipped our cocktails and had just begun eating when my phone vibrated in my pocket. As always, I jumped, and probably said fuck, because my cell phone is reserved solely for urgent calls about Calvin.

I answered the phone and Michael told me that Calvin had had a grand mal seizure, shorter than most, but a seizure nonetheless. It was only seven p.m., an unusual time for Calvin to seize, but when I remembered the recent time change, it made more sense. I hung up and said I’d be home soon as I could, but after thinking about it further, I called him back and asked him to give Calvin an extra dose of THCA oil if he could.

When I returned home all was calm, Michael perched in the dark on Calvin’s changing table, the glow of his ipad illuminating his face. Our boy seemed calm, secure and fast asleep, so, after readying two extra doses of THCA oil, I got into our bed not wanting to disturb our boy.

At 10:45 p.m. I heard Calvin wake up, so I changed his wet diaper and gave him one of the syringes of oil, then put him back to bed. An hour later he woke to a second grand mal seizure, so this time we gave him the Diastat (rectal Valium) intended to stop clusters of seizures, then I crawled in next to him. His breathing was somewhat labored, so I hoped he hadn’t aspirated in the night.

In the next several hours Calvin suffered a few more events, some heart-racing, semiconscious partial seizures, which twist his gut into audible knots and sometimes cause him to wretch. At 2:45 a.m. I gave him the second syringe of cannabis oil in small, careful squirts.

It’s nine a.m. and he’s still in bed, still seeming to be having partial seizures, though they are difficult to discern in a boy like Calvin who also seems to be sick. I’m asking myself, is he sick? Is it the reduced CBD? is it the benzodiazepine withdrawal? Is he outgrowing his other med? Is it puberty causing this uptick in nighttime seizures of late? Regrettably, there is no way to know.

Lauren called this morning to see how Calvin was doing. Natasha is walking Nellie with her little boy Adam, though it’s only twenty-six degrees outside. I’m sitting here writing and reading about benzodiazepine withdrawal, having come across this important link. I told Lauren I didn’t know if I was doing the right thing by taking Calvin off of the benzodiazepine (clobazam), worrying that doing it might impair him, indeed kill him, since withdrawal can sometimes cause a rash of seizures that no medication can stop.

I’m worried sick about losing Calvin to uncontrolled seizures, catatonia, coma, psychosis, pneumonia. He’s an impossibly difficult boy to raise, and sometimes I feel the urge to run away. At others, I can barely stand to imagine what life would be like without him here to hold and squeeze and kiss.

This archived video of one of Calvin's typical grand mal seizures might be difficult for some people to watch, but critical for understanding the plight of epilepsy. If you cannot view this video, click here to watch it on You Tube.
                      

11.17.2015

signs and culprits, symptoms and guts

Seven days have passed since Calvin's last seizure. All things considered, day six was pretty good. I watched him bowl at the Special Olympics, cheered him as he pushed each ball down the track with a bit of help from his aide, Mary. The event was packed and loud with too many players and, thus, a lot of waiting. Calvin made it through half a game and then began to tire, but not before he managed to score a spare or two. In between players he sat at a table and snacked on grapes and nuts, carrots too. As he "asked" for more by clapping his hands, Mary helped him practice his emerging sign for "eat," which was pretty cool to see.

At home last night Calvin was mostly quiet, not amping up like usual, though this morning's whining, lack of appetite and the rash developing on his chin are omens for a coming storm. He's due to have a seizure tomorrow morning—eight days his recent average stint—but not if I can help.

To stave off his seizures and keep them to a minimum when indeed they do occur, I've decided to give him a prophylactic extra dose of his daily THCA oil on nights I'm suspicious of a looming fit. In the past, doing so has seemed to isolate his seizures to a single one instead of two or three.

In other news, two lab results of my latest batch of CBD cannabis oil, though divergent, both show a slightly more dilute mix. And in trying to analyze why Calvin has been so vexed of late—spinning like a top at times and perseverating with his snapping fingertips—I chose to pause his benzodiazepine withdrawal for a spell and see what happens if I reduce his CBD; it has never been crystal clear that the CBD has had any anticonvulsive affect. Since doing so six days ago, our boy has been a little less upset. Still, it's impossible to really know what culprits might be at work—the benzo withdrawal symptoms erratic and protracted, the conflicting lab results ambiguous, perhaps scores of other variables are at play. I just do my best with the signs and facts I've got, mostly relying on my gut a lot, which, with a kid like Calvin who cannot speak and one who takes a lot of drugs, feels like the only thing I've got that makes any sense.

11.14.2015

grieving for paris, grieving for beirut, grieving for the world

In thinking about the attacks in Paris and Beirut yesterday, two of my favorite quotes come to mind. I'm wishing that more of us could think beyond ourselves, beyond our petty resentments, beyond our fear of other, beyond our greed and lust for power over others, which kindles hatred, aggression, war, massacre and genocide.

I'm grieving for you, Paris and Beirut, and for so many others living in fear and subject to oppression, injustice, exploitation and hardship and murder, even within our own borders.

Alex Churney, A Milky Way Shadow at Loch Ard Gorge
How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

People light candles in front of the French consulate in Montreal. Photo: AP
When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

11.12.2015

eleventh night

his face
pale like the moon
on a cold silent night
or the red planet Mars
bled of all that is bright
a great sea of fog
washes over his brain
a thunderous storm
or some poisonous stain
like moon tides it rises 
from miles away
I pen in my journal 
that it’s on its way

he fixes his eyes
on some strange apparition
his auras must be 
like a sick premonition
my boy arcs like a dancer
frozen in space
I call out his name
cup my hands to his face
we beckon him back
from this night’s black abyss
put our lips to his neck
and give him a kiss

he is lost to this world
in some transient state
for this war on my boy
I feel nothing but hate
he stares like a doll
his eyes made of glass
for a moment we doubt
if the seizure will pass
as hot lightening bolts
run amok in his head
 I imagine my boy
looking so when he’s dead

as the minutes tick by
he remains in a daze
I sink like a rock
in a blackish malaise
again I call out
to my raggedy doll
and he tries to get up
from his nightmarish fall
his skin starts to flush
like a gossamer lace
now a thumb to his mouth
the moon in
his face
 
Originally published 11.12.12

11.10.2015

under a salted sky

My kid is not my kid. Dad is gone. Mom just died the other night, Alzheimer’s having wormed its way through her brain, her bones, her stamina, too. It’s four o’clock, dark and cold outside, and under a salted sky, bronze-dead leaves dance down the street far from where they dropped. I lay in bed awake spooning my sleeping child—the boy my dad never met and Mom forgot, the boy I’m not sure I know—my hand draped over his hip as he shudders in the wake of another of his brain’s storms. As he drifts off to sleep, he whimpers and shivers like a cold pup in my arms. I fear he’ll rouse to another one, and if he does I wonder if it will be the one that doesn’t stop. Will this misery ever go?

Photo by Michael Kolster

11.09.2015

wanted: uber nurse

Wanted: In-home nurse. Part time. Must be reliable, kind, flexible, confident, open-minded, strong, patient, understanding, observant, honest, respectful and forthright. Must like children and dogs and tolerate hypervigilant mothers who work from home. Must be well versed in the art of mindfulness and not averse to changing dirty diapers. Preferably available to work Saturdays and some evenings in a comfortable home surrounded by gorgeous gardens with an adorable, affectionate, non-verbal, on-the-go, incontinent, significantly disabled eleven-year-old child with epilepsy.

Calvin with his uber-nurse, Beth

11.06.2015

remembering mom

Today would have been my mom's eighty-sixth birthday. In celebration of her life, Michael and I are going out to eat Chinese food, which was probably my mom's favorite kind of cuisine. It'll be on me, so I can carry on my mom's tradition of pleasing her loved ones by treating them to dinner.

I'll toast to the many times, when I was in high school and home from college, she took me to the Ming Tree restaurant for a savory almond chicken lunch, or to Best Wok for cashew chicken with sauteed broccoli. I'll remember her smile from across the table and the way she held my hand, which will take me back to the nights I used to brush her hair before bed, then sometimes get in with her and fall asleep, my little legs dangling over her hip.

I'm missing Mom terribly, even though these past several years, because of Alzheimer's, she's been leaving me by degrees.

Happy Birthday Mom. I'll look for you in the stars tonight and imagine you're the brightest one that twinkles.

Harriette May Shake, November 6, 1929 - October 3, 2015

11.05.2015

our medicine

I've seen countless videos of children having seizures. They all bring me to tears. Every time. Without fail. I see myself in them. I see my child in them. I see the need for better treatments. I understand the scourge of scores and years of pharmaceutical drugs, many of which are dangerous and addictive and yet are being regularly and cavalierly prescribed by neurologist for our children with developing brains.

The images of seizures in this video might be hard for some people to watch, but the message is critical. We need to loosen the restraints that bind the use of cannabis for medical purposes and for its research. This is not a partisan issue. This is not a religious issue. This is an issue of life or death for many children suffering from epilepsy. This is a quality of life issue for children with epilepsy and their families, whether Christian or Muslim or Jewish or Atheist, conservative or liberal. Please help educate those who continue to misunderstand and demonize cannabis. For some children, it's their only shot at a life worth living.

Thank you, Dr. Thomas Minahan, for your courage, your wisdom and your advocacy.

If you cannot view the video, watch it here on vimeo.
                      

11.02.2015

curses on the day of the dead

Yesterday, I started writing about Halloween, about how we’d had high hopes for taking Calvin trick-or-treating for his first time ever, and how we had decided to bag it last minute because of Calvin’s downward spiral. I started writing about his turn for the better, which encouraged us to take him to five or six homes all within a half block our ours. Our little cowboy was a trouper, and I wept as our neighbors welcomed him with warm hearts and inspiring cheers. He did so well it aroused suspicion in me that a seizure was on its way. But mostly I was proud of us all for taking another step outside of our comfort zone and into the larger world.

Yesterday, I started to write about Marty and John who’d come to the door with their kids and had given me a couple of wonderful hugs, and about Lauren, Sarah and Luz who dropped in, all gussied up, to try to coax me into having a drink with them at our local Mexicali bar. I started writing about Kathy and her son Felix, a neighborhood boy who was born in a labor and delivery room adjacent to the one Calvin and I had been boarding in during the first fragile weeks of his life. Felix, along with his older sister Zoe, makes handmade birthday cards for Calvin every year; they’re pretty much the only ones I keep. I watch Felix grow, seeing him ride by on his bicycle nearly every day, and I think to myself, if it weren’t for the unfortunate circumstances surrounding Calvin’s birth and messed-up brain, maybe he and Felix would have been the kind of friends who’d hang out together and perhaps enjoy some of the same things. I’d have liked that.

Today, it's the Day of the Dead, and instead of embellishing on Halloween, I’m sitting atop Calvin's changing table in his darkened room, the shade pulled, as he whimpers in bed having spent the night enduring three grand mal seizures—more than half as many as he suffers in a typical month—one failed dose of rescue THC at 10:30 p.m., one failed dose of Diastat, rectal Valium, at 11:30 p.m., a seemingly successful extra dose of THCA oil after the third seizure at 3:00 a.m. (surprisingly, no more seizures after that) then, most regrettably, hours of crying, moaning and vomiting undigested food.

Today, it's the Day of the Dead, only nine-thirty though it feels more like noon, having been up most of the night attending to Calvin. And instead of honoring parted souls, I'm sitting here cursing a sinister ghost—epilepsy—cursing the day it began laying waste to my son.

I can’t remember the last time Calvin had three grand mals in one night. Perhaps never. As I slept, his arms around my neck, I dreaded having to give him a second dose of the Diastat, a benzodiazepine not too dissimilar to the one we are weaning him off of and dangerous if given too often. I dreaded having to call 911. I dreaded having to pack up and go to the emergency room. I dreaded more failed emergency drugs. I dreaded the nurses poking and prodding him with needles. I dreaded the specter of prolonged seizures, intubations, induced comas, brain damage, perhaps even Calvin's demise on the Day of the Dead.

I wonder if the trio of seizures occurred because Calvin has a virus. I wonder if they were induced by the time change. I wonder if puberty might be exacerbating them. I wonder if they are part of the benzodiazepine’s erratic withdrawal symptoms, which are purportedly nonlinear and protracted, occurring spontaneously, not necessarily in tandem with, or limited to, a particular reduction in dose.

I’ll likely never know the exact cause of Calvin's seizures, but suffice to say, they are the spector of epilepsy, a most cursed fiend, the likes of which you'd shudder to encounter, even on Halloween.

Photo by Michael Kolster