day eight

It was bound to happen. He’d had a decent run, though decent is, sadly, a relative term. Eight days without a seizure. Nothing compared to the seventy-eight-day stretch he had some years ago when he was on high doses of three anticonvulsant medications, but that regimen made his behavior intolerable for everyone and reduced me to tears on most days.

My latest strategy for improved seizure control was to double Calvin’s bedtime dose of THCA cannabis oil eight nights ago—the oil my gut says is having the best effect on Calvin’s seizures. Since then, he has slept quite soundly, and instead of having one to three seizures in the middle of the night, the isolated seizure didn't arrive until 5:30 this morning. Hesitant to over-drug him by employing a THC cannabis rescue tincture to stop the convulsions, I passed an open bottle of lavender oil under his nose and the spasms stopped within seconds. Who knows if it had anything to do with the lavender, which contains linalool, a relaxing terpene being studied for its use as an anticonvulsant, or if the spasms were about to stop anyway. But I figure it couldn’t hurt.

Regrettably, November and December were bad months for Calvin with regard to seizures; he had thirteen grand mals in that time and at least twenty partial seizures. A year ago he was having three to five grand mals each month and zero partials. I can’t finger the exact cause of the uptick because there are so many variables at play—puberty, benzodiazepine withdrawal, subclinical illness, outgrowing doses. I have to remind myself, however, that Calvin is on 92% less benzodiazepine than he was two years ago, and two-thirds less than last December, not to mention being in an active benzodiazepine withdrawal, which can trigger seizures even in people without epilepsy. Calvin's current antiepileptic regimen consists of what I think are modest doses of THCA and CBD cannabis oils, a small amount of clobazam and a moderate amount of Keppra—a far cry from high doses of four-drug cocktails plus rigid dietary therapy.

I'm heartened by what I've seen since we doubled Calvin's bedtime THCA oil. He's been very happy and calm several days in a row, has had great balance, is sleeping soundly and not waking until nearly six o'clock. We've seen far less of the incessant finger snapping and the manic episodes you see in the photo below, which usually begin occurring around day five and gradually worsen up until the night/morning of each seizure.

My hope is that the THCA has a soothing effect overall and that the increased bedtime dose will reduce his seizures while we continue his painfully protracted benzodiazepine withdrawal which, my gut also says, has been easier on him because of cannabis.

So tonight, New Year's Eve, I'll be toasting to a better year for Calvin and for everyone.

Photo by Michal Kolster

that he can

That he can sleep well and dream
 

and crawl on all fours

That he can drink, swallow and chew
 

and can open some doors

That he can walk and climb stairs

and can eat finger food

That he has some good days

though they might be few

That he loves to be touched

and can giggle and smile

Because there once was a time

when I feared those were gone

That he can trudge down the street

In the cold and the snow 

In his first pair of boots

Like never before

That he can see, hear and feel

and can sign a few words

That he has a voice

and knows he is heard

That he’s pure to the bone

and so to behold

That he craves to be held

by those whom he loves

That he likes to be free

to do what he does

There’s no one, I bet

who is quite like my son

Calvin, today, after his first-ever walk down the sidewalk in the snow

remarkable kids

Some are remarkable kids. I call them kids because I’m easily old enough to be their mother. These kids are uber-smart, kind, funny, creative, compassionate. They've run the gamut from punk rock skateboarders to nerdy white boys with horn-rimmed glasses and Afros, to bookish gals with ebony hair, shy clean-cut hipsters and boyish girls in skinny jeans and sneakers. They’re from places like New York's boroughs, Vermont, East Palo Alto, Wyoming, Texas and Europe. These kids, any of whom I’d happily adopt, have taken photography classes from my husband, Michael, at the small liberal arts college a stone’s throw from our home.

It never occurred to me I might one day live in a small college town like this. Having lived and loved a decade in San Francisco and having enjoyed traveling for work to amazing places like Manhattan, London, Los Angeles and Hong Kong, I kinda pegged myself for a city gal. But this sleepy town has gotten under my skin a bit these past fourteen-plus years, and though it may mostly be due to resilience, I think, in part, it’s also because of these kids.

Every year around this time, greeting cards arrive, some coming from Michael's former students, like the one who wrote of his recent engagement, then went on to say:

It seems like a long time ago to me, yet I remember being in your class and finally feeling inspired at Bowdoin ... I think differently, see better, and observe more critically because of your teachings—thank you.

I wept with pride and a kind of joy when I read his words, though my throat thickened with a lump of sorrow knowing Michael will never have the opportunity to stir our own child, to talk with him philosophically or explore perceptions of the larger world and the one within ourselves. It's a theme I return to often, especially given I see these kids on a daily basis when the college is in session. I watch their movements, overhear bits of their conversations, meet their kind gazes squarely and with a smile, and then I think of Calvin and a more somber mood takes charge.

Over the years, students have expressed their fondness and appreciation by calling, or mysteriously delivering bottles of bourbon wrapped in brown paper to our door on Thanksgiving, or by sending gifts from abroad or donating to CURE epilepsy on Calvin’s behalf. Mostly, though, it's their words that are so meaningful and memorable. Some have corresponded for years, slept in our spare room, crashed on our couch, or driven miles just to join us for dinner. They always arrive bearing gifts and love, healthy appetites, laughter, good conversation and, most of all, the kind of curiosity, compassion and openness that will no doubt take them far.

Relationships with these young men and women come with some complex emotions. I relate to them with a deepness they may not fully grasp, in that I see in them what I might have seen in my own child had something not gone so terribly wrong. I relish our conversations together, on one level because of my fondness for, and understanding of, youth, and on another because I’m desperate to engage in a way I’ll never be able to with my own son. So these young adults—other people’s kids—hold special meaning to me.

I often wonder if Calvin, had he been born healthy, might've grown up to travel the world, become an artist or writer, learn to speak different languages, study abroad or perhaps would've been an athlete, entrepreneur or teacher.

When I imagine Calvin with a healthy brain and a body that works, I think he'd have been a remarkable kid. And then I remember, he is.

Bowdoin photo I, Spring 2015. Photo by Michael Kolster

full moon christmas

We were off to a decent start Christmas day, with the full moon on the rise, pulling the tides, yet out of sight. In most ways it was a day like any other—no decorations, no wrapped presents sparkling under a tree, no grade-schooler scrambling to see what Santa brought—except that Michael dry-brined a goose then prepared his family's age-old eggnog recipe for a handful of dinner guests. The weather was unseasonably mild with temps in the mid to upper fifties and no wind to speak of—rare for a Maine December—so, for a change of scenery, we took ourselves to the beach. Nellie romped in the brackish water where the Kennebeck river meets the sea not far from where we spotted a loon diving for fish. For a good part of our walk we labored with our boy who has been less compliant of late, perhaps due to a low-grade illness, the full moon, puberty, the benzodiazepine withdrawal and/or the recent onslaught of seizures coming every day or two or three.

Halfway to our usual destination we decided to abort the mission, and as we made our way back to the trail through the dune we passed happy families having picnics with their obedient dogs and selfsame kids. One tot, who seemed no taller than my knee, ran gleefully between surf and shore, surf and shore. Seeing the relaxed families, their ability to sit and rest taking in the view, knifed my heart.

Trudging through the dune, I mourned the burden of bringing Calvin places we yearn to go, and I wondered if all the walks we'd taken—pre-Calvin—along the Pacific near San Francisco, among old-growth redwoods or on foreign shores might've in some way made up for our current and indefinite struggle or inability to do so. The notion, which I'd thought might bring some karmic relief, only made me feel worse thinking perhaps I'll never again enjoy the freedom to travel unencumbered, even in my twilight years.

Considering his state, Calvin did okay, though on the long drive back he seemed to want to crawl out of his skin, mauling me and moaning all the way home. As the day progressed his mood deteriorated into lunacy, at times shrieking and shaking his head and limbs in a frenzy then whining for unclear reasons. I had no doubt he'd later have a grand mal in his sleep even though it was only day three. Calvin's grousing worked our nerves into angry, toxic knots, though we tried to rise above the fray. It didn't help thinking about all of the merry-making going on in the rest of the world.

As Calvin thrashed in the bath, I perched myself at the top of the stairs just feet away and peered out a southwest window. Barely three, the sun had already begun sinking behind a stand of white pines across the street. It was a beautiful scene, really, the road and trees still wet and glistening from the last night's rain, a painterly sweep of clouds drifting by. I thought of my friend Elizabeth, who is in a similar situation with her child, and how she, too, practices the art of mindfulness, of living in the moment appreciating life's simple gifts, like the tick of a clock, a morning mist or curve of a jar. I glanced at Calvin, my little cyclone, then looked outside, again noting how pretty it was.

Eventually, Michael and I worked out our knots with the help of a little forgiveness and some homemade bourbon eggnog. By the time Calvin settled down, the house had begun to fill with the aroma of roast goose, toasted walnuts and potatoes au gratin. Our guests began arriving in relaxing waves, some sharing bits of their own harried or exhausting day, and soon we were laughing it up huddled in the kitchen, as party guests are wont to do. And after we put Calvin to bed having given him an extra dose of cannabis oil, the seven of us sat down to a feast, raised our glasses to our handsome chef, dug our teeth into rich cuisine and philosophical talk, and tried our best, with good success, to turn the tides on worrisome full moons and loonies, and cast them into what we considered might be a hypothetical wind, at least for the night.

moon river

Moon river, wider than a mile

I'm crossing you in style some day
Oh, dream maker, you heart breaker
Wherever you're goin', I'm goin' your way

Two drifters, off to see the world
There's such a lot of world to see
We're after the same rainbow's end, waitin' 'round the bend
My huckleberry friend, moon river, and me

As the moon floated in a dark pool of sky, day ten dipped into the twenties. Frost glazed grassy blades grown so long they laid down together in waves, like my husband spooning my son in the wake of Calvin’s seizure. Like so many wilted leaves shivering on the tips of bows stripped naked by cold and wind, inside, my son shuddered in his sleep.

These fits of his never get easier to bear, and in my trepidation I gave him extra cannabis oil at bedtime, then again at two a.m.. Before dawn, the seizure ripped through him anyhow, sending him to a place I fear, yet cannot fathom.

December’s bitterness kept us inside for most of the day, walking and crawling in circles, mounting stairs then descending again, my body a faithful shadow for my boy's incessant need to stare at the sun. Calvin never quite settled, his mind likely reeling from the surge of its electric storm and, too, the powerful drugs meant to stall its gale.

Day ten was one of countless I’ve lamented living in this prison—these four walls and the epilepsy itself—which holds us captive, unable to pursue a life outside certain margins. I thought of my brother and his wife who for years took care of my aging mother as she descended into Alzheimer’s mire. And, though I grieve Mom’s passing, I rejoice and simultaneously envy my brother’s release, and I wonder if Michael and I will be serving a life sentence caring for Calvin, never again to kiss foreign shores, see more of the world, or breathe the freedom of time and place to do as we please.

Still, Michael and I were able to escape for a spell, to steal away in the night and huddle around Lauren’s fire drinking warm glögg from mugs, eating figgy pudding and putting our feet to the flame until our soles began to smoke. When our backsides and toes were sufficiently cold, we bid our farewells to join a second celebration, the moon again on the rise.

At the second party, one of the hostesses greeted us wearing an exquisite squirrel-pelt frock she’d shortened a bit to fashion a matching stand-up cowl. With my hands clasped around her soft gray waist I was reminded of Capote and Hepburn's Holly Golightly, and Moon River began flowing through my mind. Amid happy hubbub, we helped ourselves to sandwiches and sushi, sake and champagne, and mingled and joked with more fine folks from town. Behind me, as I sat at the bar, a tiny baby was passed from one guest to another, each folding him gently in their arms. I spoke with his mother, asking how much the tot weighed.

“Eight pounds three ounces,” she said, beaming that her preemie was fattening up, now seven weeks old.

Calvin was just over half that when he was born, I thought, impossible to believe that I myself had held a child so fragile and small and that he’d survived the ordeal.

After some merrymaking and plenty of embraces we headed home for bed, tired from another early start to the day. Several times in the night I awoke to Calvin kneeling in his bed and banging its panel in a frenzy. Each time, I undid the safety netting, laid him back down and put my palm to his heart, which at times was racing in what seemed to be partial seizures or perhaps simply the wicked grip of benzo withdrawal. I gave him an extra dose of THCA cannabis oil attempting to avoid a grand mal.

At Calvin's midnight awakening, I peered out the window to see a mackerel sky, the moon a glowing stone in a river of drifting clouds, and I thought of Moon River again, and of how the song reminds me of me and my boy—my dream maker, heart breaker, huckleberry friend.

and now for something completely different

In the effort to keep things just a tad bit lighter, (no worries for those of you who thrive on my darker side) and particularly on this day before the day before the shortest day of the year, one which started with Calvin's seizure, here are a few quotes from one of my favorite comedians, Steven Wright:

I'd kill for a Nobel Peace Prize.

Half the people you know are below average.

82.7% of all statistics are made up on the spot.

A conscience is what hurts when all your other parts feel so good.

A clear conscience is usually the sign of a bad memory.

All those who believe in psycho kinesis, raise my hand.

If everything seems to be going well, you have obviously overlooked something.

When everything is coming your way, you're in the wrong lane.

I intend to live forever ... So far, so good.

What happens if you get scared half to death twice?

My mechanic told me, "I couldn't repair your brakes, so I made your horn louder."

If at first you don't succeed, destroy all evidence that you tried.

Experience is something you don't get until just after you need it.

If at first you don't succeed, skydiving is not for you.

Steven Wright

easy as pie: how to make cannabis oil

If I were to vanish from the earth on any given day—get hit by a bus or by someone texting while driving, take a fall down the stairs, get into a car wreck—I think to myself, how might Calvin survive? It’s not an unwarranted worry of mine because, unlike typical children who could carry on with life after the death of a parent, without harm or peril to their physical selves, if I died, it would take a huge and focused effort for Michael to take over everything medically related to Calvin just to keep him alive and buffered from the specter of life-threatening seizures. He’d have to know Calvin’s every medicine, their doses and time of administration, know how to refill them and get prior authorizations from the insurance companies and know how to make Calvin’s cannabis oils.

So, in the interest of recording my methods in the simplest way for Michael (no, I'm not planning on keeling over anytime soon) and, too, for other parents out there considering making cannabis oils for their children, here’s the nitty-gritty of it all. It’s as easy as pie once you get over the initial intimidation of trying something new:

THCA cannabis oil:
This will give you some idea of what to expect, but I highly recommend you study the original recipe I use before you begin, which is in much more detail and downloadable from Epsilon Apothacaries. I've included several links so you can visualize and/or purchase some of the items you'll need, many of which you can buy at your local hardware or kitchen store.

1. Start with one ounce of high THC(A) cannabis flower, trimmed well, dried and cured. I use an indica dominant hybrid. Mainers, I get mine at Remedy dispensary in Auburn; they are awesome.
2. Grind the dried bud by hand (wearing thin plastic gloves if you like) or with an herb grinder over a sterile stainless steel bowl. Note: sterilizing instruments is easiest by steaming them, rather than boiling; I found this out the hard way.
3. Transfer the crushed bud to a large sterile mason jar, cover and freeze overnight and ...
4.  Pour 8 to 10 ounces of organic grain alcohol into a second sterile mason jar, cover and freeze overnight. I use cane alcohol from Alchemical Solutions but some folks use Everclear.
5.  The next day, pour the alcohol over the crushed bud and let sit, covered, in the dark for up to 30 minutes (some people recommend as short as 5 minutes), agitating the mixture several times by shaking or stirring.
6. Dump the soaked bud into a medium or large sterile stainless steel sieve placed over a sterile 4 cup glass measuring cup with spout, and press out as much liquid as possible using a sterile spatula, spoon or other tool. Discard or compost the strained plant matter. You can also have it tested to see how complete your extraction was.
7. Push a sterile 75 micron nylon mesh bag partway into a sterile mason jar. Pour the liquid from the measuring cup into the bag (which is partway inside the jar) to strain out further plant matter.
8. Cover the jar and freeze no less than 24 hours. This process is known as winterizing and will remove some of the chlorophyll.
9. Place a sterile 25 micron nylon pressing screen over another stainless mason jar and depress its center to catch the liquid. Secure it with a rubber band or string. Pour the "frozen" liquid into its center while keeping the jar in the freezer so as best to extract the frozen plant matter, which has settled to the bottom of the jar. This straining goes very slowly, so it will need to be done in stages. Keep both jars in the freezer while you wait for the liquid to pass through the screen. The screen will catch a light brownish silt and your liquid will be clear and likely green.
10. Pour the well-strained liquid into a sterile 9 x 13 flat-bottom glass baking pan and place in a darkened, light-tight room (I put mine in the basement, the windows covered to keep out the light).
11. Cover the pan with a rectangle air filter, secure it and place it near a fan positioned at a slight upward angle to aid in evaporation. Some people suggest sterilizing the fan and its blades.
12. After a day or two the alcohol evaporates off and you’re left with a thin layer of golden resin.
13. Procure a sensitive scale, such as a jeweler’s scale, to accurately weigh the resin to at least a tenth of a gram.
14. Place a small sterile glass jar on the scale, which should be set to grams. Make note of the jar’s weight in case something goes amiss or the scale turns off, then tare to zero.
15. Using a scraper and/or razor blades, scrape the resin from the pan into the jar while it sits on the zeroed scale. The resin will be black and tarry. (See tip below.) Make note of the total resin weight in grams.
16. Using a sterile 50ml glass measuring beaker for ease, add 30 mls of edible oil to each gram of the resin and agitate to dissolve over the course of hours/days. I use MCT oil, which is made from palm or coconuts, but I may be changing to a pure liquid coconut oil instead. Many people use olive, safflower or black seed oil. Keep the jar in a dark place, such as a cupboard, away from heat while it dissolves. I usually yield close to 4.5 gms of resin which, by adding 30 mls of oil to each gram, gives me about 140 mls of tincture lasting Calvin about two months at roughly 2 mls per day in divided doses. As of this post, Calvin weighs 57 lbs.
17. Transfer the oil to an amber bottle or bottles easiest to draw up each dose with a dropper or a syringe, depending upon the dose. I like these syringes which can be put in the dishwasher without the numbers washing off; choose white plungers so you can see and measure the oil easily. I use leftover Onfi bottles, which look something like this, their plastic bottle adapters made to accommodate various oral syringe sizes and can also be purchased online or gotten from your pharmacy. I label and date my batches, which are tested by the good folks at two local laboratories, Tested Labs and Proverde. 

To give you some idea of concentration, I start with flower that has about 18% THC. When all is said and done, using the recipe above, I get an oil that is between 21 - 26 mg THCA per ml with roughly 1 - 2 mg THC per ml.

CBD cannabis oil:
Procure dried, cured high CBD cannabis flower (I use a strain also from Remedy). The first step is to bake the bud in a mason jar (or two) with a slightly loose though well-thread lid at 240 degrees Fahrenheit for one hour, agitating every 15 minutes. Let cool to room temperature with the lid just finger tight. (In my opinion, this is the most straight forward way to decarboxylate your bud, but not necessarily the optimum method. I recommend researching and asking an expert, but it has worked fine for me.) Then, continue with the same steps as above, starting with step number 2, however ...

In my experience, the high CBD strain yields less medicine, so I add 13 mls of oil to each gram of resin instead of 30 mls, and I come up with a concentration of around 43 mg CBD per ml and about 2 mg THC per ml. I continue to fiddle with the potency. You can test your resin before adding the oil to have better control over the final product, but the labs need a fair amount of resin, which is why I test the end product instead and adjust Calvin's dose accordingly.

For much more detailed and precise instructions, please refer to the original recipe, from Epsilon Apothecaries, which you can download. The entire process takes several days but less than a week. 

Tip: to coax the resin to dissolve more quickly into the oil, add 1 ml of oil to the alcohol mixture and shake well just prior to evaporating it in the pan. This will dilute your final resin some, but will make the scraping easier and the dissolving faster. Simply weigh 1 ml of oil so you know how much weight to subtract to get the net weight of pure resin. In my experience, 1 ml of MCT oil, for instance, weighs about 1 gm. For instance, if you add 1 gm of oil to the alcohol mixture and, after it evaporates, you are left with 6 gms of resin substance, subtract 1 gm to account for the oil and your total net resin weight is 5 gms. Make sense?

Disclaimer: I can't be sure you'll end up with what you want or with an oil that will help your child's seizures, but perhaps it's worth a try. Remember, keep things as sterile as possible throughout the process.

Best of luck!

silent and indifferent

Slowly, she walks by my side under a tar-black sky, her blond paws darkening with dew. It’s the biggest patch of universe I can view around these parts, skirted with white pines, maples and oaks all of a similar height. As I look up into the center of the sprinkling of stars, a swath of clouds is disguised as the Milky Way. Near the northwest horizon I spot the Big Dipper, and above me is Cassiopeia, but I cannot find Orion, and I am at first vexed, then disheartened. For years now, in my fantasy, I've imagined Orion as Calvin's guard, rising over our house on clear winter nights, though I know there’s no such thing as a divine protector. I know because all I have to do is read the news about weary immigrants risking their lives on perilous journeys to escape murder, war and genocide, or the countess homeless folks shuddering alone in the cold, or the innocents riddled with bullets in churches and theaters, cafes and other public spaces in the name of hate or some so-called supreme race, false ideology or distorted God. I know because today I am reminded of the Sandy Hook elementary school first graders gunned down by a disturbed young man who was once a child himself. I know because of the millions of abused, exploited, interned, starving, neglected, diseased, disabled, chronically ill children in this world—even children like Calvin who are racked with seizures, some so severely that they don’t survive. Still, there are those who salt others' wounds swearing it’s all part of God's design.

In the center of this vast grassy stadium, a ring of trees looking on, I can see our breaths as mist begins to hug the earth in pockets at the field's rim. I want to venture to its center where by day the college athletes lope in ways Calvin will never do, out away from the glare of spotlights and the hum of engines. But the harsh light grazes me no matter how far I go. From beyond the field's edges I can hear the traffic drone, but then I catch the night train whistling its orchestra of perfectly arranged notes, and I think how artful the conductor must be, how he or she finesses the whistle into a crescendo like I’ve never heard before, and I am grateful for so many things: for my husband, for my son, for my place in this spinning blue world.

Still, I want the sky to be blacker, the stars brighter and more evident. Looking up to see the mass of them, knowing, though not fully grasping, their infiniteness, I feel insignificant, and I think about other beings on other planets doing the same, as if looking through a window or perhaps into a mirror. Then I consider those who believe life exists only on Earth, and I muse over such conceit.

Then, as I stand scratching Nellie’s head, I wonder if on those billions of other planets little innocent beings are suffering, ill, abandoned, killed, and I loathe the thought because it’s clear to me that the universe, though long ago set in sublime motion, remains silent and indifferent to our pleas. The only elixir is to think of each star as one of those little children, to think of the shining moon as their vessel of love pouring over us as if to say, please, end your hateful ways.

photo by http://favim.com

freedom

I was going to write a post called, freedom, in some ways in response to several comments on my post, bang bang, in which a reader—someone who has since ostensibly unsubscribed— implies that I am a freedom hater, apparently due to my argument for more stringent gun control. He goes on to say that my political opinions have no business being on a blog about living with epilepsy, (many of you might agree) yet somehow he thought it an okay forum to speak his mind on the subject, which I've no problem with; I enjoy lively discourse. I learn things.

So, I was going to post in honor of the freedom to write whatever the hell I want in my own personal blog, the freedom to share my opinions on matters that mean something deeply to me and to some extent are shaped by Calvin. I mean, don't we make art for ourselves, first? Isn't that the most honest way? Haven't we the freedom to evolve? And, if Calvin could speak, or even think in these terms, we'd be talking about this important stuff together.

The reader's comments make me wonder where some people who profess to being on the side of freedom might lurk when it comes to things like a woman’s right to control her own body or the specter of rounding up Muslim Americans. I think about these kinds of issues because, one, I often wonder, if I’d had a crystal ball and could've seen the suffering Calvin endures in life, what would I have done? (readers, cast no judgement, I don't savor the notion of abortion, it's just that none of us can really know what we'd do in certain tragic, precarious or life-threatening situations because those events often change us, which is why I like to say, if men could get pregnant, abortion might be a non-issue) and, two, the recent rants by you-know-who about rounding up an entire segment of American citizens reminds me of when Hitler did just that, beginning with exterminating people like Calvin before moving on to Jewish men, women and children.

After some spirited volleying, however, the reader and I wished each other peace. All's well that ends well.

I also wanted to write a post in honor of my friend Carol, who, in her comment to my post, senseless things, implored me to bring something into my life "to see, or hear, or feel, that would add a different element" from those that cause me pain and despair. One of those elements, which I’ve discovered is missing to some degree, is laughter. And in honor of that most restorative action and sound, I wanted to post this video (the last half of which particularly cracks me up). Though uncouth at times, I encourage you to watch it with an openness to a little potty humor and silliness. You might laugh, too. And for those of you on the Right, there's this one.

But since I’m free to decide the content of this blog, I’ll also write about the three grand mal seizures Calvin has had in six days, all in the early morning, all three-plus minutes long, all of which seemed to respond to a homemade THC cannabis rescue med, though I can't be sure. He’s having a rough time of late with a lot more seizures than usual, and it is hard to tell if the uptick is due to the onset of puberty, the benzodiazepine withdrawal, slightly more dilute cannabis oils, the zinc supplement, a low-grade illness, or a growth spurt and its concomitant reduction in seizure med blood levels. My hunch is it’s mostly the benzo withdrawal, which is non-linear and therefore unpredictable, but I’ve got no way of knowing. I just have to forge ahead in my search for an elixir, with my gut at the helm.

As for freedom (I decided to name this post thus, anyhow) I hope most of all for us to have freedom from the burdensome shackles of epilepsy, which is one of the most heinous, unbridled oppressors of freedom I can think of.

The end of one of Calvin's last daytime tonic-clonic seizures ... the red white and blue of it.

rich beyond words

A dear reader replied to one of my latest posts, senseless things. This is what she wrote:

I hesitate to say this because it is clear you are in such pain, Christy, and I don't want to add to it. We can feel it. But I wish you could find something to bring into your life to see, or hear, or feel, that would add a different element--even for just a little part of each day. After reading your blog for years, I worry about you because you deal with such overwhelming burdens all the time. Everyone needs some break from such a load. We are all, after all, only human. Do give yourself a try at it, please....

Here is my heartfelt reply:

Dear Carol,

I imagine it's no mystery or surprise to my readers and friends that, though I love my little bugger as much as any mother loves her child, raising Calvin has been a great hardship and burden. Some days are more difficult than others, like when he is in the throws of withdrawal, in some sort of pain which I can't discern, amping up to a seizure, having a seizure, in the hospital, or when I am without the help of a nurse, like I find myself now. And, the recent loss of my mother seems to add to the weight of my transient frustration and despair.

For much of my adult life I've felt far younger than I thought being my age should feel. However, for the first time ever I am almost beginning to feel the strain of my fifty-two years, for real. The wear and tear my body and mind have been facing lately, especially as Calvin grows, is taking its toll. My elbow tendons and lower back often ache from lifting him and repositioning him at night, I am in constant need of catching up on missed sleep, and his behavior of late can be difficult to endure.

But you mustn’t think that I don't have a rich and wonderful life or that I am somehow depressed or unhappy. It’s not the case. I've got an amazing and loving husband who is a great father, cook, provider, forgiver, and a comic diffuser of my sour moods. I live in a cozy home with lots of natural light in a college town in a most beautiful place called Maine. At arm's length I've got all of our creature comforts like cooking with gas, hot water, a reliable, comfortable car, a bottomless bottle of bourbon for special nights, a wood-burning stove, dimmers on all of the lights, non-stop Frank Zappa (if I want), an industrial-strength johnny-jump-up and a SleepSafe bed for Calvin, a handmade screened-in porch to survive the summer bugs at night, a grass and clover lawn, a motorless mower, flowers galore in spring and summer, and some astoundingly beautiful beaches not too far.

Sure, I am missing a lot of the things I loved most in San Francisco, Seattle too—my friends, the hills, the city streets and lights and views, the mild air, the eateries and bars, the shows, the architecture, the crowds, the young folks, the diversity, the parks, life before children—but I've finally carved out a pretty special place here after a period of feeling a bit like a tourist, followed by a year or two of touch-and-go before we could really feel rooted. Thankfully, I am buttressed by a most amazing community of friends who love us and understand our situation as best they can. They take me out, bring me flowers, make me cocktails when Michael is out of town. They drop by homemade goodies and fresh farm eggs and have me to their houses for lunch and/or to pick apples. They walk the dog with me and for me and drop in for a drink before heading home. They do my grocery shopping if I’m in a terrible pinch and they come help me with Calvin when I need it most. I have my evolving garden, which is a kind of art, and the space and time to do my writing, which I've come to love more than any drawing or photographing or designing I've ever done. I have most days to myself to indulge in these things. Our dog nellie is a great companion, too, lifting my spirits if ever I'm feeling blue. Evenings, after Calvin is kissed and tucked into bed, I spend with Michael listening to music, talking, reading or watching films and eating the most delicious meals in the world, which he creates nearly every night for me.

Having said that, your message has encouraged me to get out more with friends. I fancy taking a trip again somewhere, sometime, or perhaps attend a writing retreat, though, because of Calvin, travel is difficult to do. I did start running but have seemed to develop pain in one foot, which is so unlike my strong body. While I concede that I am a little older than I was yesterday, I do expect, like every other pain or injury I've endured, it will at some point disappear. In the meantime, perhaps I should jump back into the pool.

Suffice to say, I have a rich life, Carol, perhaps in some ways beyond all these words. And I am happy, contrary to what readers might think after scanning particular posts. Maybe I should consider shifting my focus slightly. I do appreciate your concern. Just know that through writing, I validate my own downs which, though they might seem many, I cherish, because I find them to be transformative, and they are, after all, my own.

Sending you much love,
Christy

My family

senseless things

seizures that seem to never end. heart-racing, mind-wasting, body-aching convulsions that send my son into oblivion and back again.

federal prohibition of medicinal cannabis, buttressed with continued lies and propaganda which only serve to fuel a futile and unjust war on drugs, yet impedes my ability to help my child. 

stockpiles of fetishized guns and their foolish shooters hiding cowardice behind myths and ignorance, fear and violence, hatred and lies.

mind-numbing anticonvulsant drugs that bathe my baby’s brain, stifle his memories, kill his senses, alter his mood, wreck his steadiness and screw up his own defenses.

frightened, starved, shivering immigrants fleeing everything they know and love, risking all they’ve got—the nakedness of life—just to see another day.

days on end of monotony, worry, frustration, fatigue. at times, my own unreasonable, wearisome disgust of one dear son who flails and flops, drools and drops, seizes and screams, none of it his fault.

my black and brown brothers and sisters strangled in the grip of injustice, or at the end of a lawman's gun, every single day.

pompous folks who aspire to lead and yet spout intolerance and hate. dim-witted, short-sighted, narrow-minded, hot-headed, macho bullies wielding their fear-mongering, bigoted lies over women's bodies, people's religion and refugees' lives.

a child's benzodiazepine withdrawal. imagine it for yourself.

homeless folks who others shame, knowing not from what or where or when those men and women came, nor the hardships they've endured, nor their long road ahead.

babies, children, mothers, fathers, sisters and brothers riddled with bullets propelled by the NRA.

religious zealotry. racism. war. terrorism. ignorance. misogyny. greed. fear of other. lust for power and love of money. entitlement. xenophobia. my own disgrace.

Photo by Michael Kolster

bang bang

Growing up we had guns. I remember the time my brother Scott got shot in the thigh with a BB while he, some friends and my brother Matt were goofing around with an airgun. The BB embedded itself in his skin and likely stung like hell.

When my dad took us camping, sometimes, in an open field, we’d practice shooting cans and bottles set on top of a log or hanging upside down on sticks. He kept a pistol in a felt-lined box on the top shelf of his closet. At least once, he showed me how to load the clip full of bullets into the butt of the gun, how to cock it, sending the bullet into the chamber, and how to release the clip for safe storage. It’s weight surprised me and, as if it were made of solid gold, it strained my skinny wrist if I held it outstretched in one hand.

One weekend when I was fourteen, not long after some jerk had exposed himself to me at the top of our street, my parents went out of town for a night, perhaps to bring one of my siblings off to college, though I don’t rightly recall. I asked my friend Wendy to stay over and, because I felt somehow safer sleeping in my parents bed, Wendy slept in the bottom bunk in the room across the hall.

Around midnight the phone rang. In a daze, I answered and heard a man panting on the other end. Immediately, I hung up thinking it was just a prank. I was about to doze off when the phone rang again. This time, my mind began racing, thinking he was looking at my address there in his phone book, knew where I lived and might come to get me. The hair at the back of my neck pricked with heat and sweat. Without a second thought, I reached up into my dad’s closet and grabbed the felt-lined box, fished out the gun, loaded it and kept it in my grasp. After a long time, the phone stopped ringing, and I laid awake in the dark as long as I could, waiting and afraid.

So many Americans believe the myth that we are safer if we own a gun. That couldn’t be further from the truth. The presence of a gun makes it five times more likely domestic violence will result in murder. And if guns are loaded and kept nearby for self defense, children find them and shoot their parents, their siblings, their friends, themselves. Guns discharge accidentally in stores, parking lots and homes, and kill or maim innocent folks. Guns kept close at hand are easily triggered by an impulsive finger when their owners—or their owners' relatives—are provoked, angry, afraid or suicidal.

Some argue that it is our inalienable right to own a gun when perhaps it should be thought of more as a privilege, one in which we must earn the right, like driving a car; they're simply too dangerous. The second amendment, after all—believe it or not—was crafted to suppress southern states’ slave revolts, not to allow unfettered access to assault rifles and automatic Glocks.

The modern obsession with guns in this so-called great nation of ours is nothing short of sick, particularly when, due to mass shootings, suicides, homicides and accidental deaths, someone dies from a bullet every sixteen minutes. Guns have been fetishized to such an extent that men—and perhaps a handful of women—strap them on like some phallic accessory and swagger around in public as if to say, “I'm potent!” Makes me wonder.

When I discuss reasonable gun control measures with others, I often hear the defense that law-abiding citizens should have the right to own a gun. And while I think most of us should consider getting rid of our guns (I like the idea of a government buy-back program—melt 'em all down!) I don’t necessarily disagree. The problem is that most gun-toting citizens are law abiding ... until they aren’t. Think of the guy who shoots his girlfriend during a domestic dispute, or the curmudgeon who fires at a car full of kids because they are playing their music too loud, or the barroom brawl that goes south and ends with a bullet in someones head, or the man who mistakenly shoots his son thinking he is an intruder. Besides, things like universal background checks, thirty-day waiting periods and the implementation of a terrorist no-gun list, do not deny most of us the right to own a gun if we want. But the NRA and its lobbyists, with their fearmongering tactics and stranglehold on politicians from both parties, though mostly republican, have many Americans scared shitless and believing in debunked myths.

Presidential candidate Ben Carson said after the mass shooting in Roseburg, Oregon, “I never saw a body with bullet holes that was more devastating than taking the right to arm ourselves away.” I imagine if that body belonged to his wife or child, he’d relent. Other politicians have responded only by encouraging prayer. And while prayer is fine and restorative and good, if there is a God, it doesn't appear as if She's listening; we've had at least one mass murder every day in this country and 33,000 people have died from gunshots in a year.

You might ask, why am I writing about this on this blog? I write because I don't want Calvin or my husband, or any other person for that matter, to be another sad statistic.

Nothing happened that night when I was fourteen, but I shudder to think what I might have done if my friend Wendy had startled me by entering the dark room. Might I have shot her thinking she was the creep who had been breathing into the phone? I can never know. Odds are, though, in some town, perhaps today, things like this are bound to occur as long as we remain idle and silent, watching the clock tick until the next sorry incident involving a gun.

Holly Ballard Martz
bang bang (I cannot second your amendment)
cast wax, encaustic, mixed media

the subversion of quackery

Written by Elizabeth Aquino from her blog a moon, worn as if it were a shell

quacksalver

PRONUNCIATION:

(KWAK-sal-vuhr) 

MEANING:

noun: A quack: one pretending to have skills or knowledge, especially in medicine.

ETYMOLOGY:

From obsolete Dutch (now kwakzalver), from quack (boast) + salve (ointment). Earliest documented use: 1579.

I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

I lay in bed after the seizure thinking back over the years of her seizures and the years of various doctors' prescribing her anti-convulsants. I thought about the combinations of these drugs—22 of them—their effects on her brain and body systems, how none of them worked, how her seizures still came and how they, the drugs, wreaked more damage, arguably, than the seizures themselves. I thought about the moment when she was nine months old, writhing and screaming uncontrollably all day and night, when I asked the esteemed neurologist whether my baby might be reacting to the combination of the three drugs he had her on, one non-FDA-approved and the other two approved for use in adults. I thought about his response, a hmmmmm over the telephone that stretched into infinity, followed by that's an interesting idea and then the universe tilting on its axis, folding up and disappearing into a black hole from where it had been birthed. I knew in that moment that no one knew what was up with my baby, and if my suggestion was a good idea (I was 31 years old with a Bachelor of Arts in English and French Literature and a Pastry School certificate), we were traversing a no-man's land.

I thought about the moments when we injected her with five vaccines to protect her health and yours, her tiny mouth an O, the subsequent scream that stretched out for years, my own a mirror image. I thought about the derision, the mockery that those of us who question vaccine safety have been subject and then the smugness of Science.

Quack.

I thought about all those moments this morning as I lay beside Sophie, and then I thought about the thousands of families still subject to the multiple drug combinations that these doctors are still peddling, how a young woman contacted me last week to tell me that her 18-month old baby, on four drugs, was still seizing. I thought about the compulsory and draconian laws that were recently passed in California regarding vaccinations and how grateful I am not to have any babies subject to them. I thought about the CBD and the THC and the fight to get it and then the getting it and Sophie's immediate response. I thought about my great good fortune in meeting Ray at Realm of Caring and Dr. Bonni Goldstein and living in California where we have access to high quality cannabis. I thought about the Coloradans: the Stanley brothers, Paige Figi and Heather Barnes Jackson, all of them instrumental in shifting Sophie's path and countless others. I thought about the FACT that Sophie is now off nearly 80% of one drug and 65% of the other, that these two drugs have done irreparable harm to her, even as they are withdrawn. I thought about the cavalier attitude that most neurologists have toward cannabis, their caution and their ignorance. I thought about Obama's acting Drug Enforcement Administration Chief's statements on November 12:

"What really bothers me is the notion that marijuana is also medicinal -- because it's not," Rosenberg told reporters last week. "We can have an intellectually honest debate about whether we should legalize something that is bad and dangerous, but don't call it medicine -- that is a joke.""There are pieces of marijuana -- extracts or constituents or component parts -- that have great promise," he continued. "But if you talk about smoking the leaf of marijuana, which is what people are talking about when they talk about medicinal marijuana, it has never been shown to be safe or effective as medicine."  

I thought about the wheels of Big Pharma, churning, trying to catch up. I thought about their influence on Science's practitioners, how they pay them to promote and advertise their products, ensure their profits. I thought about the money they must set aside for those damaged by their products, how they are shielded and how little it matters to their bottom line. I thought about quackery and the subversion of quackery—when what is considered Science is actually not Science at all.

Quack. Quack.

I thought about those who come here and tell me that I'm too angry, that I complain too much, am terrifying, a miserable person. Is there a word for a reverse black hole? For chaos pushing outward, inward? If I were an angry person, I would have long since disappeared. You don't watch your daughter seize for nineteen years and suffer from terrible side effects of drugs and vaccinations that you gave her in good faith and then see her improve dramatically with an oil from a plant that anyone can grow and stay angry. You'd be dead, and I'm very much alive.

Repeat. I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

Quack. Quack. Quack.

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

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

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

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

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.

Photograph by PAOLO PELLEGRIN, New York Times Magazine

these are a few of his favorite things

Staring at the sun. Taking baths. Chewing toys. Snapping fingers. Spinning in the jumper.

Photos by Michael Kolster

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.