6.25.2017

bat shit crazy

For an hour and a half straddling midnight—Michael several hours north—my son sat up in his bed and banged his head on its padded side every few minutes. When he did, wearily and perturbed, I got myself up (perhaps as many as two dozen times) to lay him back down and cover him up. Each time I fell back in bed, Nellie came over so that I'd pat her on the head. Exasperated, I finally checked and changed Calvin's diaper, took his temp which was unusually low considering how warm his skin felt, then crawled in with him.

The past three days Calvin has been bat shit crazy much of the time—shrieking and hollering, flailing, manic in the bath, ridiculously restless, crying at times for no apparent reason. As I write this I understand that I, too, have been a lunatic of sorts—hollering and shrieking at times in response to his maddening behavior, his agitation, his immense stubbornness to do what or go where I want him to. His obstinance makes it difficult and sometimes impossible to pass a half-block radius when on foot. He has a mini tantrum every time I try to take him to the health food store or to the donut shop for a cruller and a cup a joe, even though he's been to these places several times before.

I wonder if, when he is free of his benzodiazepine, he'll evolve to a place of calm and compliancy. I wish I knew what impels him to drop down. Is he fatigued? Do his legs or knees or feet hurt? Is he dizzy? Weak? Confused? Anxious? I really have no idea.

Three years ago I wrote a post called dear dr. rx. In it I describe my frustration with neurologists' apparent cavalier way of prescribing benzodiazepines. Gradually, the more I read about adults' experience of the terrors of benzodiazepines and their withdrawal, the more I'm convinced of physicians' ignorance of their side effects, dangers, and proper withdrawal, and the more my frustration grows into outrage. We've been weaning Calvin's benzodiazepine clobazam, aka Onfi—which was prescribed, in part, to help him get off of another benzodiazepine, clonazepam, aka Klonopin—for over three years; we've got nine or more months to go until he's rid of it. I've little doubt benzos and their withdrawal are what have stunted Calvin's learning and cause his mood swings, his malaise and misery. I've no idea who my kid would be without having taken them for nine of his thirteen most formative years. Suffice to say I believe that very child has been stolen from me, and I'll never get to know him or see what he might have become.

Having said that, I have heard benzos work for some without causing habituation, and I am aware that they might be one of few options for some of the most serious epilepsy cases.

This morning, after having given Calvin a dose of THC around midnight when he was so restless, he woke to a grand mal at six. I've little doubt that if I'd repeated a dose of THC around two or three he may not have had the seizure at all. He's slowly getting back to baseline as the morning wanes. Michael is on his way home. Calvin has only 1.5 mgs of clobazam to rid himself of. The sun is shining. The peonies are fragrant and in full bloom. Friends are stopping in to bring me groceries, sit and sip coffee with me and walk the dog. The kid is calm and the bat shit crazies in the seizure's wake will hopefully take a hiatus for a while.

Photo by Michael Kolster

6.23.2017

good fortune

Though I'm known to kvetch about this and that, I try to be mindful of my fortunes: dear friends, an amazing community, a loving husband, cook and provider, a cozy home, a sweet kid, and the ability to celebrate often without having to worry about where I'm going to sleep at night or where my next meal will come from. Aside from Calvin's poor health and disabilities, his seizures, the treatments and their side effects, and his active benzodiazepine withdrawal, one could characterize my other concerns as first-world problems.

So, perhaps the passing of the summer solstice, which I spent at my friend Lauren's house wearing a shared garland, drinking mojitos and eating popcorn aside a crackling fire, seeing old friends and meeting new ones, can be for me a kind of reboot. Perhaps I can emerge from a place of slight guardedness and cynicism to one more welcoming of my changing surroundings, which is not to say that I'll surrender my passions, political or otherwise.

And, as I remind myself to be grateful, I'm cognizant that Calvin has had only two grand mals thus far in June, which is notable considering he had as few in May—a record low since before starting cannabis and weaning his benzodiazepine over three years ago. In return for that gift of sorts, I knock on wood, clasp my hands and bow my head in recognition of my good fortune.

6.19.2017

pure serenity

Again, four-thirty came too early on Sunday, especially having not fallen into bed until midnight. I had only half expected Calvin's grand mal, and though I was disappointed it came just eight days after the last, I was grateful that it waited until nearly dawn. As he seized, Michael and I lifted the netting covering his bed, unlatched and lowered its safety panel then protected his head from banging on the wooden lip of the bed. I grabbed the vial of lavender oil and rubbed it on the bottoms of Calvin's feet, then held it under his nose so that he could get a good whiff of linalool, a terpene thought to be effective in thwarting seizures. When it was over, I gave him his morning dose of benzodiazepine early, then crawled in with him as he drifted in and out of sleep for the next hour.

Lying in bed next to him, our windows open to the cool, humid air, I listened to the birds awakening. This time I think I heard a thrush, a catbird and a pileated woodpecker. Other than the birds, and Calvin's shallow breathing, my world was silent. The birdsongs have a strange way of echoing (or is it dampening?) in the morning fog, which I imagined lurking across the meadow that abuts our back yard. Similar to early evening, dawn is a gloriously serene time of day in the garden. Sometimes it is so quiet, especially in the wake of a heavy rain, that I can hear the river rushing over the falls a mile or more away. In the silence, I like to imagine the wing-flutter of butterflies, bees and dragonflies, or the sound of moist earth giving way to spears and sprouts and churning worms in the organic garden in the field behind our home.

The regrettable situation we find ourselves in—the seizures Calvin has, the worry over impending ones, clusters of them and trips to the ER, the shrieking he does in the days leading up to a grand mal, the relentless years of sleepless nights, the grief over losing what we thought parenthood might promise, the despair harbored knowing we will never be grandparents, the tension felt over every injury or close call, the resentment of folks who don't seem to or can't understand, the feeling of being imprisoned in time, space and circumstance—causes me, among other things, sometimes to unwittingly clench my teeth at night. I wake these days with an aching jaw, having pressed so hard as if unable to let go, like a hound dog with a bloody bone.

Later, like on most mornings before the neighborhood is awake and passersby in the back field begin to linger, come and go, I slipped into my green rubber boots and took my coffee outside. I strolled around the garden in the same pattern that I make with Calvin, over dewy grass and moss and stone, observing every shrub, bud and blossom, smelling fragrant ones, pulling weeds and errant clover. I gazed beyond our yard to the idyllic field which the college now owns, with its quaint antique schoolhouse, feeling immense gratitude for its openness and pure serenity. I hope with all my heart that promises are kept and that it can remain that way; it is so beautiful and calm in its simplicity. Sometimes it feels as though my secret garden is the only quiet space I know, the only place where my mind can be at ease, my body relaxed, my heart calm.

6.14.2017

seven days running

I hope having partial seizures every morning is not going to be Calvin's—our—new normal. Seven days running now. I can't recall that ever happening since Calvin was first diagnosed with epilepsy when he was two years old. Somehow, though, the kid takes a licking and keeps on ticking. Extraordinary child.

Calvin two years ago looking much the same as he has this past week.

6.12.2017

birdie

In this part of the country as we near the summer solstice, it starts getting light as early as four in the morning. With the windows open and my eyes closed, I can hear the birds begin their glorious racket. At times they sound far off, a distant echo, and at others I can almost guess in which nearby tree they're perched.

Calvin has had seizures five days in a row, though no more than one or two a day and only one grand mal. As a result I've been awake at least two nights for hours before the dawn. The fact that his seizures were provoked by a virus and a low-grade fever (and, perhaps, the full moon as it hovered overhead just as he had his grand mal) is some consolation to me, as opposed to being purely spontaneous. It seems as though the homemade THC rescue med is working well to stop his partial seizures while thwarting them for the remainder of the day. Sadly, it hasn't always prevented his grand mals.

Today, it is nearly ninety degrees outside, just slightly cooler than yesterday, so we are both sick indoors trying to stay cool and get well. I sit on Calvin's changing table as he rests and naps, bites his toes and plays with his toys in his nest of a bed. From an upstairs window I see what I think is a baby finch splashing in one of our birdbaths, flapping its wings and ruffling its feathers. I think of how much Calvin reminds me of a little bird: his small frame and quick heartbeat, the way he opens his mouth for me to feed him and, if he is very hungry, the way he bangs the table or claps his hands for more. The birdlike chirps and coos he often makes when he's most content remind me of some sort of feathered friend, as well as how he splashes in the bath, just like that finch.

And, like a baby birdie does with its mother, when I crawl into bed with him, he curls up under my wing into a ball smaller than you might imagine. As he rests his head on my chest, I can feel his little heart a-flutter.

6.09.2017

snafu

The acronym stands for situation normal: all fucked up, and it is an apt way to describe life with Calvin, my thirteen-year-old severely disabled, legally blind, non-verbal, incontinent, autistic boy who can't do much of anything by himself and who suffers from medically refractory epilepsy, which is to say that despite pumping him with loads of pharmaceutical drugs, he still endures seizures of various kinds at various times and with varying intensity. Oh, and he is also coping with a ridiculously protracted and brutal benzodiazepine withdrawal and its heinous side effects, which compounds any misery he already bears.

Thankfully, however, cannabis—three kinds of which we use to thwart those seizures—has seemed to help: a homemade THCA oil, a CBD oil, plus a homemade THC rescue tincture.

Today is day ten since Calvin's last grand mal seizure, which began as a partial complex seizure and evolved into a full-on convulsive tonic-clonic. Yesterday and today he has suffered similar complex partial seizures lasting upwards of three or four minutes during which he breathes so shallowly it appears as if he has stopped breathing altogether, which is common though still unsettling. But both seizures stopped within about thirty seconds of giving him a squirt of THC tincture inside his bottom lip and rubbing it into his gums.

This is a good time to mention that I'm ever grateful for Calvin's teacher and ed techs who know Calvin well enough to contact me when he doesn't seem well. They've made some very good calls and have saved Calvin from having any serious seizures while at school. So, too, are we lucky to have a nurse who rarely, if ever, misses work, who loves Calvin and with whom I can leave him when I must go out to do errands or walk the dog or when I want to garden or look in on Woody.

And I would be very remiss to neglect mentioning what an awesome husband I have who is easy on the eyes and does the grocery shopping on days like today and who cooks dinner every night—literally—and who affords me the ability to stay at home, because I'd never be able to hold down a job or a career out of the home even if I wanted to, what with a son who has missed at least seven weeks of school this year.

But even for all of the wonderful things we have at our fingertips including our cozy abode, our kind, loving and generous friends, Michael's steady and absurdly amazing job in this beautiful state of Maine, our situation—our normal—is still seriously fucked up.

6.04.2017

broken flowers

This weekend, I spent time with a friend while she grieved the small and the not-so-small of life—the personal, the political, the theoretical dreads and disappointments we all face as human beings. While weeping, she apologized, describing how she thought her despair was somehow unbecoming. I told her, no, that mourning is one of life's beautiful expressions. Perhaps it was because of the time I'd spent with flowers that morning—the vibrant pinkish rhododendron blossoms fading to antique white with spoiling ruffled golden edges, the tulips held in a glass vase, their stems arching and bowing, their petals relaxed and splayed revealing delicate stamen before surrendering them to the earth, withered and crepey—that made me think that our response to life's tragedies, like a flower's gorgeous death, can be beautiful, too.

Often, I surrender to my deepest sorrow at times unexpected, like when I closed and latched the French doors this afternoon before I realized Calvin's pinkie finger was caught in the hinge. He was silent at first, in his excruciation, then wailed and writhed in so much pain I could not console him. When he finally calmed, I wept, sorry for having hurt him, sorry for all the pain he must suffer on a daily basis—brain, guts, bones—which we can't control, sorry for the gorgeous mess that is our life together. We are like broken flowers, exquisite, flawed, weeping.

As I finished this up, Michael and I heard a tremendous crack and felt the ground shake with a thump. We peered out trying to identify the source. Next door, a gigantic limb from a one-hundred-year-old maple had fallen, taking down power lines with it, having missed grazing our house by twenty feet, and now leaning into a neighboring spruce. The sound of splitting bark and flesh is like no other. The sensation of thousands of pounds of bough pounding earth felt in my heart like the bass at a rave. It is beautiful; it is awful. It is all the glorious stuff of life.

5.30.2017

boy of responding kisses

Yesterday, Memorial Day, the day we honor soldiers who died at war, I held my son as he seized. Because it was his fourth fit in little over an hour (thankfully, the previous ones were not grand mals), and because it was midday, and because it was a most violent one, I gave him rectal Valium. At his side, I watched and felt him convulse and wretch and gasp for air until the benzodiazepine finally bathed his brain and the spasms disappeared. When it was over, his body limp and his eyes half-mast, I gently doffed his vomit-sopped shirt and put a new one on. Then, I cradled him and lifted him into bed—sixty pounds of his dead weight in my arms.

Once in bed, as I covered Calvin with his blanket, carefully tucking it in behind his back and under his feet, I thought about Walt Whitman wrapping and burying his cold soldier son on the battlefield. I wondered what it must have been like for him to know that his son—"boy of responding kisses"—was gone.

Though it is only Calvin's fourth or fifth daytime grand mal in over one-thousand days (they mostly occur at night since reaching a therapeutic dose of THCA cannabis oil), I was still disheartened. But then I realized that in May thus far, Calvin has suffered only two grand mals; the last time he had so few in one month was over three years ago when he was on a ridiculously high dose of the benzodiazepine, clobazam, which we've been weaning for nearly as long.

The road ahead is still a long one; we've got at least seven more months of weaning the benzodiazepine before he's completely off. But if Calvin can have one of his "best" months with regard to numbers of grand mals in the face of an active withdrawal and on ninety-seven percent less clobazam, I should try to rest at ease a little, and focus simply on my boy of such responding kisses.

Photo by Mary Scarpone

5.29.2017

vigil strange I kept on the field one night

Every Memorial Day, I post this passage by Walt Whitman for its beauty and poignancy. While my mind is focused on veterans of war who have died on the battlefields, the images this writing provokes give me pause to remember and honor all of the children my friends and loved ones have lost. This goes out to their parents, as well as those lost in war:
Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville

5.26.2017

knock on wood

Just a quick note to catch you up on things: spring has finally sprung in Maine; Calvin is on day nine since his last grand mal; though he projectile vomited on me while Michael was in Boston for the night, I survived; and—most notably—Calvin has had only one grand mal seizure so far this month (perhaps due in part to intermittent nighttime THC?). Knock on wood for us, okay?

5.23.2017

cityscapes

Sunday night I returned home from a long weekend in New York, having stayed with extended family and some longtime friends. My time in the city was energizing. It began with a train ride from Newark where I met a handsome young Venezuelan couple from Orlando. Upon emerging from Penn Station, the three of us promptly got lost as the mercury approached one-hundred degrees. But we were all so excited that the heat didn't matter; we simply feasted on throngs of humanity, buzzing traffic, screaming sky scrapers and the various aromas, both putrid and sweet, that make Manhattan what it is.

On my first evening, I languished on the steps of a Brooklyn brownstone with Michael's cousin, Lance and his sweet pup, Stella. We drank rosé and, as dusk fell, his lovely wife Valerie pulled up on her bicycle. Joined by their college-age son Merlin, we dined inside on a homemade eggplant Parmesan, shooting the shit, catching up on family and on recent events. I slept in an extra room on a twin bed, the cool breeze of a fan drifting over my hips.

The next morning, on the way to see my friends Sofie and Steve, I had the pleasure of embracing—literally—Demetrius and Cory, a couple of handsome Jehovah's Witnesses who asked me to attend their bible study. Standing in the dappled shade of a sidewalk tree, I described to them my belief in pantheism—that God is Nature and Nature is God. I explained my trust in the interconnectedness of things, and then told them a little about Calvin. They no doubt agreed with the manifestation of God in nature, and as we parted they lovingly said they'd hold my son in their hearts.

Later, I sat eating an apple in the front seat of a taxi talking to my Middle Eastern driver about the unseasonably hot weather, about the goodness of fruit, and about bad passengers and worse drivers. He offered me one of his bananas to eat, then discarded my core in a brown plastic bag that he tied off carefully into a loose knot.

My friend Antoinette saw me wave goodbye to my driver then, with the sun at our backs and the wind in our faces, she and I sauntered across the Brooklyn bridge, soaking in the cityscape. Once we reached Manhattan, we paid our respects at Ground Zero, meditating at the edge of its magnificent reflecting pools with 2,606 names carved into their steely frames, the massive glass Freedom Tower watching over them like a parent.

We eventually made our way to Antoinette's Tribeca restaurant, Petrarcha, where her husband, Leo—pure Italian, once from the motherland—is the owner-chef extraordinaire. Leo brought me a glass of rosé and some fresh buffalo mozzarella with speck (smoked prosciutto) followed by an outrageous gnocchi, flourless chocolate mousse cake and the perfect cappuccino with a heart-shaped foam lid, then wouldn't let me pay the bill or the tip. Antoinette and I relaxed in our corner booth, begging intermittent visits from Leo, and whiled away the afternoon as the city and its glorious melting pot of people strolled by outside the glass.

On the long subway return to Brooklyn that evening, I sat next to a neatly dressed bespectacled woman, perhaps younger than I, with a glinting gold crescent cap on one tooth. She said she'd always lived in Brooklyn and I replied that I had come from Maine. We riffed about the weather, chewed our gum (we both had the same brand and flavor in our purses) and talked about children—mine and hers. I mentioned my blog, and before my stop, she asked me to giver her the web address. Using her pen and pad, I gave her my email too, then learned her name—Jacquline Williams. I've tried to find her on social media, but haven't had any luck thus far. We gave each other a squeeze before I exited the train. Jackie, if you are out there, please friend me.

Though I was still full from lunch, that night I managed to snarf one fried fish taco and a margarita on the rocks at a local bar in Brooklyn. Steve, Sofie (a friend from my days at Levi Strauss) and their nine-year-old son Dash—who, I should mention, is a pretty great kid and about Calvin's size—shared a picnic table with another young family. As we dined, I surveyed the happy patrons eating their spicy tacos and drinking beers. I nearly wept at how folks of so many races and ethnicities mingled in such harmony.

On Saturday, I took in a Broadway show called Natasha, Pierre and the Great Comet of 1812, which has been nominated for a dozen or so Tony's. Jaimie, who is a backstage dresser and another acquaintance from my days at Levi's, got me a ticket. The set and lighting were sumptuous and ingeniously designed. The show, its score and performers gave me chills and brought me to tears several times. Afterward, I grabbed a drink with Jaimie and we got caught up on the last twenty years. She got weepy telling me how cute she thinks Calvin is (she follows my blog closely) and so I held her hand. It was as if we'd been dear friends all these years.

On my last day, Sofie and I woke to strong coffee and breakfast burritos lovingly made by her husband. Steve, Dash and I watched an incredible Anime, Barefoot Genabout the bombing of Hiroshima, the selfsame title of the graphic novel their son Dash is reading. Watching the scene where the pilot releases the bomb that demolishes and burns the city and its inhabitants, I couldn't help but think of "our" current reckless president.

Shortly thereafter I said my goodbyes to the boys, then set off with Sofie for one last day on the town. We headed northeast to The Met to devour two splendid exhibitions: Comme des Garcons and Irving Penn. I ended my New York visit with a burger and malt at the Shake Shack before hugging Sofie goodbye, jumping on the train and heading back to the airport where, again, I visited with a kind stranger who ended up feeling like a friend. As the plane lifted off, I watched the New York cityscape disappear behind a vast sea of clouds. I was sad to say so long to the spectacular city, though eager to get back to Michael, Calvin, Nellie and my garden, and heartened in knowing I'll return sometime again.

Click on any photo to enlarge.

5.19.2017

imperfect world

In a perfect world, I’d be the span of a continent away this weekend celebrating my induction, along with a dozen or so of my fellow teammates, into my university’s athletic Hall of Fame. In 1986, the year they voted me team captain, my college swim team won the NAIA national championship.

In a perfect world, my husband and my son might have joined me on the uneventful, albeit long, cross-country plane ride plus a drive east from Seattle through the Cascade range to the arid wheat fields and pastures of central Washington state. However, a month or so ago, when I understood—and lamented—that I couldn’t bare to leave my oft-seizing boy to travel three-thousand miles and be gone no less than five days and at least a full day of travel away, I decided not to go.

But when Michael saw my disappointment, and since he'd cleared his calendar to take care of Calvin, he gifted me a ticket for a quick trip to New York instead. I’d not been back to the Big Apple, one of my favorite places in the world, for seven years, though I had promised myself I’d go every spring. He knew I desperately needed to get away, could sense my restlessness, exhaustion and despair, and if I couldn’t manage a cross-country trip, at least I could get away for the weekend to a place that I love that is less than an hour flight away. This, I could justify doing. And so yesterday, though it killed me to leave a sick, feverish and seizing boy and my loving husband, my blooming garden and the perfectest dog in the world, I pried myself from the safety and comfort of home and put myself on a plane.

During the flight, and especially when I finally saw the Manhattan skyline, anchored in a way by Lady Liberty lifting her torch above the horizon, I thought about a perfect world. In a perfect world, I thought, my child would’ve been born normal. In a perfect world he wouldn’t be suffering epilepsy. In a perfect world, he wouldn’t endure the effects of heinous medications and a protracted, painful and difficult withdrawal. In a perfect world my son would walk on his own and see well and run and play with friends and talk and tell us what is wrong. In an ideal world, perhaps, I’d be able to be two or three places at once.

But it is not a perfect world. It is imperfect at best. And so Michael is home with our sick little kid and I am here being coddled by loved ones and friends, and hopefully by Sunday when I'm heading home, I'll be rested, refueled, energized and ready to get back to the business of taking care of Calvin again.

Looking to Manhattan from the deck of the Brooklyn bridge.

5.12.2017

friday the thirteenth

Though today's date is May twelfth, it's also Friday the thirteenth—thirteen days since Calvin's last observed seizure. How strange it feels to have witnessed my boy have some kind of seizure or another on half of the days last month and then not see any nearly halfway into this one.

This morning, under a still, gray sky, Michael and I went to watch Calvin participate in the local Special Olympics. Despite the fact that it was barely fifty degrees, the most disabled children—the ones in wheelchairs and strollers and using walkers—sat around for two hours while the other disabled children, teens and adults, raced around the track finishing their miles and their four-hundred yard races. Don't ask me why the event coordinators insist on putting the longest events for the healthiest contestants at the beginning of the day. Perhaps there is some method to their madness, but this weighs heavily on me and Calvin because, in one way or another, most days are hard ones for him—suffering seizures, drug side effects, withdrawal side effects, constipation, abdominal discomfort or pain, headaches, agitation, confusion—and so a day outside exposed to the elements of a Maine May no doubt preys on his fragility. Nevertheless, with the help of his ed tech Karen he endured until the start of his hour-late, ten-yard "assisted walk," though not without having had periods of spaciness and eye-fluttering (seizures?) and several attempts, some of them successful, at dropping to the ground throughout morning. He brought up the rear this time, due in great part to a slow start and the absence of an uber-competitive mother tugging him along. When he crossed the finish line, I got down on my knees and hugged my boy, who smiled a huge, proud smile. Not long after, Michael and I loaded him in the car and ferried him away.

Once home, he spun in his jumper, strolled hand-in-hand with me through the garden touching his favorite shrubs (the prickly mugo pine is his favorite) and walked quite well to Woody's, swinging his arms correctly at his side and with good balance (bad omen?). At Woody's, as always, he rocked in the rocker and ate a piece of chocolate from the candy jar.

At the usual time, the bus stopped at the end of our drive to off-load Calvin's stroller which he had sat in for the Special Olympics parade of athletes. Another ed tech, Michelle, handed me a stack of colored papers meant for Calvin, who was upstairs in his bed playing with (mouthing) some of this toys. With the baby monitor slung around my head eighties style, I sat in the bench on our deck, the sun having just come out, reading cards some of Calvin's sixth grade classmates had made him for the day:

Calvin is cool!!
Good luck! Congrats! From: Ashley
Congrats CALVIN!
Good Luck! Nice Job! From Hannah
Good luck. hope you win!! from: your friend connor

Two of them, drawn with great care and skill, made me cry:

Dear Calvin, I hope you have a great time at the Special Olympics and win! But most importantly have fun and enjoy yourself! Sincerely, Simon

and

Good Luck! Yay! Nice job! From: Lydia :)

I'm hoping that Friday the thirteenth becomes Saturday the fourteenth and so on. I'm hoping that, in the big picture, each day gets a little better than the last. I'm hoping that whatever I am doing will keep working; my guess is that the minuscule amount of THC tincture at midnight on suspicious nights might be thwarting pre-dawn seizures. And I'm hoping that one day Calvin will compete happily and more independently in the Special Olympics without a blink or a drop, a spell or a balk.

Calvin with his ed tech, Karen

5.08.2017

animal. vegetable. mineral.

Friday night, we began our weekend in the nearby town of Bath with a quick bite and a drink at our dear friends' Daphne and Eloise's new restaurant, Salt Pine Social. The restaurant was festive and humming, guests clinking their drinks, servers buzzing between tables, the bartender and cooks flat out. We were grateful to have snagged the last two seats at the bar, our favorite spot to dine. With glasses of bourbon and beer in hand, we perused a fresh menu divided into three categories: animal, vegetable and mineral.

Vegetable:

We began our culinary experience noshing on a scrumptious chiogga and golden beet salad with citrus and arugula just as a complimentary bowl of melt in your mouth Myer lemon ricotta gnocchi with parsley pesto arrived.

Mineral:

Next, we dipped into the sea, beginning with a parchment-lined terracotta bowl cradling a heap of deep fried anchovies, followed by a plate of garlicy fried calamari, a platter of gravlox and cream served aside a stack of nutty Danish rye triangles and, lastly, a bowl of plump and savory le moules. Regrettably, we had to leave our hosts and our happy sojourn abruptly in order to make it home in time to relieve Calvin's nurse.

Vegetable:

Considering how things have gone for Calvin of late, it was a good weekend. He hasn't had an observed seizure of any kind in nine days, though he has exhibited some suspicious behaviors, spells of dubious pallor and a bit of what I call seizure breath. I anticipated grand mals last night and the night before, so I tried a new strategy. After midnight both nights, I gave Calvin four milligrams of homemade THC cannabis tincture, a quick and minuscule squirt inside of his cheek, not enough to wake him or risk aspiration. The seizures never manifested.

Animal. Vegetable:

On Saturday night we hosted a small dinner party with some friends we hadn't seen for awhile. Michael had spent most of the afternoon in the kitchen making a chicken mole. He made it with toasted sesame and pumpkin seeds, jalapeños and cilantro and served it over rice with warm corn tortillas, sour cream, guacamole and green salsa. Before eating, we sat before the fire talking cracking jokes and talking about, among other things, corn snakes, oscars, goldfish and frozen mice snake treats.

Vegetable:

While I mashed avocados in a bowl between my knees, I looked beyond our guests out the French doors to a glowing early evening garden, glistening with new rain and splashed with bunches of color from magnolias, amelanchiers, early-blooming rhododendrons, tulips and the crimson of young peony shoots.

Mineral:

As sparkling water and wine poured freely at the dinner table, upstairs our sweet Calvin slept like a stone.

5.01.2017

holding onto hope

I'm trying hard to hold onto hope. After three years of an ongoing benzodiazpine withdrawal—until now yielding no significant uptick in monthly seizures—Calvin has begun having quite a few more these past two months. His average monthly number of grand mals since April of 2014 had held at around 4.3, but in March and April this year he suffered six each, and in April he had thirteen obvious partial seizures.

Recently, I got Calvin's report card stating that he has missed twenty-nine days of school, and has been tardy more than a handful. His absences—which amount to a total of six weeks of missed school—are largely due to seizures. Last month he suffered seizures on fifteen of thirty days.

When resulting despair begins to set in, I remind myself that not long ago Calvin went twenty-seven days without a grand mal. And so, as we inch his benzodiazepine toward a goal of zero (Calvin is now on 1.75 milligrams per day, down from a high of thirty-five three years ago) I try to remain optimistic that he can repeat a good stretch of seizure-free days.

Another consolation to my sorrow and dread is that I still have a few tricks in my back pocket. In other words, we haven't run out of options to try to reduce our boy's seizures. This weekend, I heard a Radiolab segment about treating mice with lactobacillus to increase GABA, the body's chief inhibitory neurotransmitter responsible for reducing neuronal excitability. GABA is what Calvin's brain is craving during benzodiazepine withdrawal. It made me wonder if doubling his morning probiotic, rich in lactobacillus strains which promote GABA, might mitigate some of his seizures. So I increased Calvin's probiotic this morning. If that doesn't work, I'll likely try switching his magnesium citrate supplement to one that has the ability to cross the blood-brain barrier and may also help regulate the uptake of calcium, which might have a positive effect on his seizures. Something else I've tried several times is to give Calvin a few drops of concentrated THC tincture when I suspect he's having partial seizures at night, and also during grand mals, to thwart further seizures. It's too early to tell for sure if that method is working, but it shows promise. Then, if none of those options pan out I'll likely increase his CBD oil or switch to an oil that has a higher ratio of THC to CBD, which Haleigh's Hope offers, considering some children find relief from their seizures using a bit of THC.

So, we still have some ammunition to hurl at Calvin's seizures during this painful and ridiculously protracted benzo withdrawal which, regrettably, is happening during puberty, a time when seizures often increase anyway. But I'm pretty hell bent on getting him off of the class of drug that he's been on since he was three.

Having said all that, despite the fact that Calvin is having a handful more seizures than he was three years ago, he is a different kid altogether, more, in ways, like he was before the benzos and other antiepileptic drugs. Before we began the wean and before we started him on cannabis, he used to wake crying every morning and I wondered how I could tolerate it much longer. He used to be awake for hours in a single night. He stopped being able to sit calmly on our laps while we read him books. He flailed and shrieked every time we changed his diaper. He coughed and sputtered and screamed much of the day. He pulled my hair. He shrieked every time we got in the car and most of the time we drove. He was disruptive in our favorite cafe. Now, with over ninety-five percent less benzodiazepine coursing through his veins, he is far calmer, more patient, more loving, more focused and, frankly, infinitely more tolerable. I'd even go so far as to say that, for the most part, he is a joy to be with again, and much easier to take care of than before.

So, I'll keep holding onto hope that we can get Calvin safely off of the benzo and be rid of them forever. And I'll keep holding onto hope that someday we'll find a way to stop his seizures while still keeping our sweet, happy, mostly calm, boy.

Before the benzos (and other drugs.) Photo by Michael Kolster

4.27.2017

tell it like it is

The pained looks on some of their faces made me sad. I wondered what they were thinking as I shot image after image onto the screen. Some of the still photos seemed to evoke similar responses to the video of Calvin's grand mal seizure from a few years ago. Did any of them have a brother or sister with epilepsy? Did any of them suffer from the disorder themselves?

This spring I was again asked by my friend Hadley to give a talk to her neurobiology class at Bowdoin College. It is a chance for the students, many of them pre-Med, to see a different side of neurobiology, one not seen through a microscope but through a distinct kind of lens—the patient one. I was also asked to give the same talk to my friend David's public health class, also at Bowdoin. I was most grateful for the opportunities.

Getting in front of so many sharp students and telling it like it is feels second nature, reminds me a little of my days of coaching swimming, looking out at the pool of bright faces filled with curiosity, hope and excitement—perhaps even a natural uncertainty—for the future. My hope is that my hour-long show of photographs and anecdotes of life with Calvin can somehow make a difference in how they see the world of health, medicine and disability.

I start by telling them about the white matter that is missing in Calvin's brain. I tell them about his premature birth, his first seven weeks in the hospital, his atrocious vision, his low muscle tone, his poor balance and coordination, his developmental delay, his form of autism, his incontinence, his inability to speak, his need for constant surveillance. Calvin, with all of his difficulties, I say, would be a piece of cake to handle if not for the epilepsy, the drugs and their side effects.

I tell them about the condescending physicians with chips on their shoulders. I tell them about the ones who dole out prescriptions for benzodiazepines like candy and yet don't seem to have a clue about how to wean them nor know the list of heinous side effects withdrawal can cause. I tell them about the neurologists who seem laser-focused on stopping seizures at any cost but seem blind to quality of life. I tell them about the doctors and nurses and technicians who placate me when I ask them to give Calvin their best phlebotomist or intravenous technician. I tell them about the neurologists who reject cannabis as medicine because of their fear and ignorance or perhaps their collusion with big Pharma. Then I tell them about the physicians who have partnered with me, who treat me as their peer, who aren't afraid to help a child even if it might cost them, who are open to new ideas and who aren't afraid to advance the treatment of epilepsy with cannabis.

After Calvin's sixth day in a row of seizures—thankfully only one of them being a grand mal—I began fearing daily ones might become our new normal and that I might have to cancel my presentations. But the spate broke the other night when I gave Calvin a small but concentrated dose of THC tincture made of cannabis flower, organic alcohol and oil. I've given it before, but in my best memory, never to stop a cluster of partial seizures at night. I can't know for sure, but it seemed to work two nights in a row.

Back in the classroom, many of the students were interested in the cannabis aspect of Calvin's story. They wanted to understand drug policy. They wanted to understand how I made the oil and how difficult it was to get a physician to recommend it for my child. One of them commented on how absurd it is that the government still prohibits cannabis use in the face of mounting evidence that, not only does it help, but that it is not as dangerous as other drugs. I began telling her about the reasons behind negative government propaganda from the 1930s and how the bogus racist argument fueling cannabis prohibition has shaped cannabis and law enforcement policy and has lead to the wrongful mass incarceration of African Americans, many of them innocent.

One student who had read a fair amount of my blog wondered why I wrote so much about politics. I told him that Calvin informs my opinions of things and that he has made me realize, more so than I did already, that marginalized communities suffer and face undue discrimination. I explained that if I could help folks understand the hardships disenfranchised people—the disabled, people of color, immigrants, LGBTQ people and Muslims, for instance—face on a daily basis, I might inspire empathy for them, and perhaps make folks think differently about public policy. I told him that since Calvin is non-verbal, I must be his voice, and that the same can be true of others of us who can advocate on behalf of people whose voices, because of fear and oppression, have been quashed.

In reflecting on my presentations, I realize one thing I left out: my little Calvin has emboldened me to speak more of my mind, to shout if I have to, to challenge authority, to voice frustrations, criticisms, and uncensored opinions. He inspires me to be evermore fearless amidst an oppressive, nonsensical, patriarchal, puritanical, often backwards world. Tell it like it is, he says to me in his singular kind of way. It may pain people to hear it, but how can I refuse?

Calvin, telling it like it is. Photo by Michael Kolster

4.21.2017

stay fearless

"Stay fearless," she said at the end of the interview. The words of Kathrine Switzer, the first woman to run as a numbered entry in the Boston Marathon, stuck in my head along with images of her being chased and shoved by a race official in an attempt to rip the pinned number off of her chest.

These days, especially since Calvin was born, I try to live by those words. I try to avoid fear-based decisions. If I let fear grip me I know I'll be paralyzed.

Wednesday, when Calvin woke, he wasn't quite himself. I considered giving him an extra Keppra to thwart any impending partial seizures, but I decided against it, not wanting him to be too drugged up. Regrettably, within an hour he suffered the dreaded seizure after having become increasingly irritable and out of sorts. Later, I was loathe to take him to the grocer, but I remembered those words—stay fearless—so I gathered him up and drove him to the store.

I never know how much to push Calvin beyond his comfort zone. He has rarely walked outside for more than a few blocks, particularly since last summer when he broke his foot and lost a lot of the progress he'd made. Every time I try to take him past Woody's house three doors down he has a tantrum and I never know if he is simply being stubborn or if there is a grand mal on the horizon. Other times, he is both wan and flushed, and I wonder if he is having some sort of mild seizure or if his complexion is an indication of an aura. Often, his balance and gait are excellent the day before a grand mal. All of these things were true on Wednesday, but I took him to the store regardless because it was only day five since his last grand mal and over two weeks since his last benzodiazepine reduction. More so, I thought to myself that if I don't venture out because of fearing a seizure or provoking one, we'd never go anywhere.

So we went. Calvin did great, walking well and being mostly compliant. The next morning he suffered a grand mal. We both survived.

Sadly, Calvin is having some kind of seizure several times a week these days, though thankfully his grand mals are still confined to the night. With regard to reducing the fits, I've still got a few options in my back pocket such as increasing the CBD or THCA cannabis oils or trying a maintenance dose of THC. I could stop the benzodiazepine wean, but that would constitute a fear-based decision that might not yield much of an improvement, plus we've seen his behavior improve immensely with each bit of benzo we remove.

So, I'll try to stay fearless in the face of seizures and drugs side-effects and the thought of losing my child. I'll keep pushing beyond my comfort zone, however little, and keep encouraging Calvin to step outside of his own. After all, this is our marathon. Though it is often painful and scary, we're in it to the finish, so we might as well try to shine.

Photo by Ann Anderson

4.15.2017

wondering and worrying

I'm sitting here tending to my drugged-up child who suffered two grand mals last night despite double doses of THC meant to thwart the second one. I'm sitting here in my pajamas though it's nearly three p.m. Outside it is glorious, perfect for gardening or sunning or walking the dog.

I'm sitting here wondering if I've given Calvin too much medicine or not enough; he vomited just after his morning dose of anti epileptic medications. I tasted the bittersweet benzodiazepine liquid in the thick spittle I kissed off of his cheek after he got sick. I had to guess how much to redose.

I'm sitting here, as my child sleeps, pining to go outside. I can hear the birds going crazy as the wind whips bows and swirls dead leaves into mini cyclones in the field. I'm sitting here worrying about the world, about our Ignoramus in Chief and his penchant for bluster, worrying about his impetuousness, narcissism, contempt, dangerous provocations, lust for power and warped craving for praise. I'm sitting here wondering if our nation's young men and women will be shipped off to war again.

Last night as I held my boy I heard the train whistle and the downstairs clock chime, then later the chapel bell ring. I hear a small aircraft flying overhead and immediately get that sinking feeling in my gut recalling lonely childhood days, remembering my young friend Martin who died with his father in a similar plane. I can just make out the river waters thunderously raging over the nearby falls and I think of the boy Calvin's size who went over Niagara that day. I laid there worrying—my angst is always worse before dawn—if Calvin might suffer a third grand mal. I wonder about the world's convulsions—the aftershocks, the fallout—in the hands of despotic men who selfishly want it all.

Photo by Michael Kolster

4.09.2017

in good hands

Despite my penchant for kvetching, I want you to know that I do get out to celebrate with friends more than just once in a while. Here I am a last month with my homies Luke and Sarah, belly up to the bar, drinking a fabulous margarita at our local cantina while my husband was in Europe for three weeks taking photos, giving talks and putting up a solo show. During Michael's stint away, my buddies kept me (relatively) sane, entertained, and well stocked with flowers, firewater and food galore.

No matter how you slice it, I always seem to land in the good hands of neighbors and friends.


4.07.2017

suffer the little children

While spoon feeding my thirteen-year-old son his lunch on a day he stayed home from school due to seizures, I watched a new documentary called Newtown. I wept through most of it, listening to the harrowing 911 calls from terrified victims hiding in offices and closets during what must have felt like an eternity of bullets spraying the halls. I remember the December day the Sandy Hook elementary school massacre happened a few years ago, remember thinking of those little bodies the size of my own son being shredded by bullets shot from an assault rifle in the hands of a disturbed young man of twenty. 

Had he shot one child for every year he languished on this earth?

Yesterday, I saw more haunting video of dead Syrian children, victims of an Assad chemical weapon attack on his own people. One man lost twenty-five family members, including his wife and infant twins, whom he held in his arms. Rows of lifeless children filled the back of a pickup, their eyes open and blank, their skin ashen, their chests bare from being hosed down in a vain attempt to save them. They didn't stand a chance.

And though I know the saying doesn’t mean what it sounds like, I still think to myself, suffer the little children. And then I wonder, why?

As dawn came, I laid next to my boy and I heard the morning doves coo. All the birds—the chickadees and jays and cardinals and catbirds and sparrows and crows—are beginning to go crazy now that the snow has almost melted and the purple spears of crocuses are beginning to shoot through. Lying there, I wondered whether, if the world’s leaders were replaced with women—no more an absurd idea than a world led by mostly men—there would be so much warring and genocide and rape and guns and bombs and atrocities between neighbors, tribes and nations. I wondered if female leaders would care more about Mother Earth. I wondered if, under female stewardship, the world’s children, rather than be made into child warriors and brides, would be fed and clothed and housed and educated and empowered and cared for. I wondered if, under female rule, we’d be fearing nuclear war and rising sea levels and air and water pollution like we do. I wondered if our children would be deprived life-saving medicines and a chance to live up to their potential in the world. 

Suffer the little children; they’ll be the ones who must live in this crumbling, power-hungry, greedy, misogynistic, patriarchal, intolerant world.

A man carries the body of a dead child, after what rescue workers described as a suspected gas attack in the town of Khan Sheikhoun in rebel-held Idlib, Syria. Reuters/Ammar Abdullah

4.03.2017

letting go

In these trying times of political strife, climate change, war, famine, and stark inequalities, my son—despite his seizures, erratic behavior and significant disabilities—serves as a great elixir to intermittent despair. When at the hands of badgering, smug know-it-alls (including but not limited to the Poser in Chief), I look to Calvin to soothe, to calm, to remind me what is important and what should simply be let go.

You see, Calvin has no grasp of abstractions, no awareness of the passing of days, no concept of the outside world, of corrupt and greedy players, or liars, or fools. He does not discriminate. He does not hate. He does not manipulate. My boy simply sleeps when he is weary—save the times when drugs and their withdrawal mess with his system—eats when he is hungry, walks when he feels strong, and asks for hugs when he most needs one. Other than the most primal of human instincts, he has no care or worry in the world. 

So when the world's atrocities wrench me, and when situations or people bait and irk me, I turn and behold my sweet, handsome, impish, drooly, precious boy. He prompts me to remember what matters most, which is not amassing money or power, impressive homes or fancy cars, attribution or persuasion, aggrandizement or adulation; it is love and kindness, patience and understanding. It is existing to ease another's soul. It is the Zen of living deep and in the moment. It is the art of letting go.

July 2013

4.02.2017

april fool

Just as the snow from the last storm had nearly melted, in comes another one dropping its down, burdening bows and concealing any color that had begun to show. I’d seen crocus tips emerge from the earth the day before, which had given me some hope. But, so far we’ve gotten at least half a foot as the flakes continue their descent upon what has again become a black and white world. 

Sometimes I wonder if Calvin feels my despair over these long winters and earthly woes. This morning he woke to a partial seizure—his heart pounding, his lungs grasping breaths in fits and starts, the telltale fingers of his left hand pumping back and forth in his mouth. I gave his meds early and crawled into bed with him as he went back to sleep, his arms hooked around my neck. April Fool, I thought of myself, and as I finally drifted off next to him the clock struck five-thirty a.m.

By seven o'clock he seemed fine, just as the limbs outside were so laden with snow they nearly touched the ground. At eleven, though, Calvin was bearing his own burden again, and after a second partial seizure he began a downward spiral into some sort of illness or spell of withdrawal. He cried and rubbed his head as if he were suffering a migraine, perhaps needed to vomit, or both. I held him until he calmed then he fell asleep in my arms.

The white sky keeps sending its fallout. Lumps of it drop from sagging branches. The day before this storm was the first day in his life that Calvin walked in a snowy yard, the stuff having melted enough so that he could manage, while holding my hand, without falling or getting snow into his ankle-high waterproof boots. I wondered if he will ever walk well enough to traverse the yard without my help, and then I thought about what a friend said to me about having adopted our dog Nellie, who is calm, loving, cute and well-behaved:

"It was meant to be," she said, to which I expressed my dissent of her theory. I wondered if she might use the same logic regarding Calvin and his afflictions. The notion made me bristle.

Nope, I'm just an April fool, stumbling around in this messed-up world with my wonky kid, nature's accident being Calvin's endless seizures that march through one month into the next seemingly no matter what we do. 

3.29.2017

the monsters are due on maple street

"The tools of conquest do not necessarily come with bombs and explosions and fallout. There are weapons that are simply thoughts, attitudes, prejudices, to be found only in the minds of men. For the record, prejudices can kill and suspicion can destroy and a thoughtless, frightened search for a scapegoat has a fallout of its own, for the children and the children yet unborn."

—Rod Serling

If you cannot view the video below, click here.
Twilight Zone - The Monsters Are Due on Maple Street-SD from Tracie on Vimeo.

3.27.2017

out in the world again

For weeks, if not months on end, I’ve been losing myself, drowning in the mire of a disabled child's life, a human shadow traipsing around as Calvin makes endless loops around the house. I'm losing myself in the weariness of monotonous days, losing myself in loads of laundry, a sink full of dishes and bursting bags of dirty diapers. I’ve been losing myself in the whiteness outside, the prolonged cold, gritty streets and frigid wind. My circumference, as my friend Lauren said, is notably smaller in winter. 

When the mercury made it above freezing yesterday, Lauren rang asking if Calvin and I might like to join her for a trip to the Giant Steps. Calvin had had a good night and morning, and was in a rare mood, so I agreed. Within an hour I’d taken a shower, changed three diapers, drew up Calvin’s late afternoon cannabis oil, packed up some snacks, some juice, a bib, a rag, some diapers and some wipes. I loaded Calvin into the back seat of Lauren’s car—at thirteen, he’s just barely big enough now to ride without a car seat—for the scenic drive down Harpswell Neck to Bailey Island.

Halfway there I was able to look up from feeding Calvin to see the open ocean on one side of the peninsula and Mackerel Cove on the other. The scene was picturesque, like one you’d see on a postcard: a dozen or two boats hitched to their moorings floating in a sheltered cove, leafless grey trees, their diaphanous canopies like clouds resting on the horizon. My view reached scores of miles, far beyond the mere feet or yards I'm accustomed to seeing in town. I felt my chest expand and my spine straighten up like I do when I step off of a plane in the West. As we drove, I soaked in the view. Cedar shingle and painted red saltboxes and capes sprouted from snowy knolls against a backdrop of blue sky and sea. Clumps of sumac branched like frozen dancers along the side of the road. I felt as if I were in another world, and then I realized it was one I had simply forgotten existed so close to home.

Turning down a narrow lane, we saw the ocean splayed out before us. Lauren dropped me and Calvin at the trailhead while she parked her car up the road. In an act of defiance, Calvin planted his feet, wouldn't move, and began expressing his disapproval of the cold and/or his inability to transition to the strange, new place. His tantrum included a mix of laughter and shrieks. I struggled to prop him against my knee rather than letting him fall to the soggy ground. Finally, I had to hook my arms under his and carry him to a wooden guardrail where I thought he'd be willing to stand. On approach, I misjudged the height of the railing, he lunged and pitched forward over it. Had he more momentum behind him, he might have plummeted over the edge and down the rocky escarpment, a demise that, for an absurd second at that exasperating moment, I imagined might have been fitting.

When Lauren joined us she took one of Calvin's hands and helped me walk him down the narrow trail to our destination. I was surprised at how well he did. Several yards ahead we found a spot to stop and rest. Lauren sat with Calvin so I could peer over the ledge to view the Giant Steps, a glacial rock formation I had never seen. The mammoth cube-shaped rocks looked as if they'd been placed there by Hercules. As I squinted out over the Atlantic I began to weep, realizing how confined I've been for so long, and grateful to Lauren for having lead me beyond my comfort zone.

On the way back, we had to wrestle with Calvin who, several times, struggled to stop and drop in the mud. All in all, though, he was very compliant and even walked the extra distance up the hill to the car.

Today, it's raining, revealing the green of things, and though I'm stuck indoors once more, I've been reminded that sometimes with a little help it's not too difficult, yet enormously vital, to get out in the world.


Photo by Lauren Catlett