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!