waiting to be all done

In the wake of a full moon, I woke this morning to three degrees. Winter still has its grip on us, the temps not expected to rise above freezing for another week, plus a foot or more of snow coming in the next couple of days.

Tomorrow, I am set to reduce Calvin’s benzodiazepine once again, lowering it to two milligrams per day from a high of thirty-five three years ago when he weighed far less. And though this represents a greater than ninety-five percent reduction, it will take us over seven months to get Calvin completely off of the stuff.

I was lamenting yesterday that I had ever agreed to put Calvin on a benzodiazepine, Klonopin, when he was tiny and only three. Dr. Rx had told me that it was meant simply as a bridge drug while another one got up to speed. But what I had failed to question was his insistence to add it to a two-drug cocktail, and if I knew then what I know now, I would have resisted adding the benzo to his regime. Though I continued to press, Dr. Rx kept Calvin on Klonpin for over a year, and it took the use of a second one, Onfi, a year later under the care of a different neurologist to get him safely and effectively off of it. And though Benzos are meant only for temporary use because of their propensity to cause addiction, Calvin has been on Onfi since he was five; he's now thirteen. 

Recently, I read an open letter about the trouble with benzodiazepine withdrawal, and though I’m fully aware of their dangers and heinous side effects, it killed me to hear it first hand from a victim, knowing with great certainty as a witness that Calvin is suffering in similar ways:

We trusted our doctors and took a pill, as prescribed, and it damaged one of the two main “circuit boards” that regulate our brains. We have damaged GABA receptors, which means our bodies and minds don’t have the ability to slow/calm down. We suffer from chemical brain damage that can take a long time (sometimes years) to heal. Many of us have severe physical symptoms: painful joints, bones, muscles, teeth, eyes, mouth, etc. Our skin burns. It feels as if we have bugs crawling under our skin, or that bees are stinging us. Our muscles twitch and spasm. Our legs are weak and our balance is off; walking is difficult. But some of us do walk, and walk, and walk, as we are suffering from akathisia, a movement disorder that causes an inner restlessness and a compelling need to be in constant motion. We have painful and frightening pressure in our heads, making it feel as if the world is sloshing around us. Many of us are bedridden for months at a time, unable to take care of the most basic of human needs. We can’t think properly, and our memory is impaired. There are countless other physical symptoms that we may have as this is not an exhaustive list. What we want our friends and family to know is that we are sick and in pain. It’s hard to manage our lives. Many of us are unable to work or to function in our roles and duties as a parent. On top of being physically sick, we have mental symptoms as well.

Without a functioning GABA system to calm the fight/flight/freeze response of our brains, we live in a state of fear, anxiety, paranoia, or terror. We may have depersonalization or derealization. Frequent panic attacks are common. In benzo withdrawal, we lose the ability to feel positive emotions. Love, happiness, and joy are not within our reach. We slog through our days feeling a zombie-like doom and gloom. Intrusive and looping thoughts are common. We have very little control over our minds. Visual, auditory, and olfactory hallucinations are not uncommon. We wish that our friends and family understood how frightening it is to lose the ability to think rationally and to no longer feel as if you are the same person you were before benzo withdrawal. It is hard to live in the altered reality that benzo withdrawal can create.

What compounds my despair is the fear of what benzodiazepines do to the developing brain of a toddler, tween or teen. I wonder if Calvin will ever go back to being what he might have been. I wonder if the benzos are why Calvin spoke only one word once: Mama. I wonder if the benzos are why his memory and ability to learn have been so severely limited. I wonder if he will ever fully calm, if he’ll stop his fidgeting fingers, if he’ll stop poking his eye and grinding his teeth, stop his shrieking. Or, has his brain been forever damaged by the fiends?

Some have told me that we mothers of children with chronic epilepsy suffer from traumatic stress syndrome, the word “post” conspicuously missing since we deal with the trauma of our children’s condition in real time. I'm not sure I totally agree, but I do know that dealing with my son's condition amplifies any worries over money and time, deepens the burden of everyday living, exacerbates emotions such as anger and angst, strangles my patience with the ordinary and tests the limits of tenuous relationships.

But, with luck, in less than a year my boy will be all done with benzodiazepines and will truly begin to heal. My hope is that we, too, will be on the mend, moving forward beyond some of our most troubling times.

Calvin signing "all done" Photo by Michael Kolster

unrelenting

At five degrees and four o’clock this morning, I woke to Calvin’s seizure scream. It was the second grand mal in nearly as many days, following fever, vomiting and two partial seizures yesterday, plus a spate of bad days in the previous week. More violent than most, Michael and I had to work to keep Calvin's feet and hands from hitting the wooden flank of the bed, and he must have bitten his cheek or tongue because blood trickled from his lips. Since the three-day string of seizures didn’t seem to be abating despite extra cannabis oil and Keppra, we opted to give him the rectal Valium. I undid his diaper and inserted the lubed-up tip of the vial’s syringe into his rectum, then depressed its plunger. Within seconds, the benzodiazepine entered his bloodstream and bathed his brain; the spasms calmed, and not long after he drifted off to sleep.

Outside, freezing winds whipped bows into a frenzy and pressed into the seams of windows. The furnace fought hard to keep up. I crawled in next to Calvin, noting how much bigger he is getting and wondering if he has outgrown current doses of his meds. We spooned for an hour or more before I finally slept. In that hour, my mind wandered, pondering recent events. I thought about the kindness of my friend and her kids who walked Nellie in a windchill of three degrees, and of Michael’s student who took Nellie the day before in similar frigid temps. I grieved for my friend who woke up to find her precious eight-year-old daughter lifeless two mornings before, and I wondered if my boy might be next. I recalled a conversation about feeling stuck in life, backed into a corner of sorts, and wondered when I'll next escape.

We're so close to getting Calvin off of his daily benzodiazepine, yet so far away. We are within days of reducing it to two milligrams per day, down from a high of thirty-five when we began weaning it three years ago. It will take a miracle to get him off of it by my birthday in October, though I suppose anything is possible. But for now we will pause the wean for a bit so that Calvin can get his bearings.

Like winter in Maine, my boy's seizures prove stubborn and unrelenting. And just when I think harsh conditions are about to let up, we're hit with extreme temps, clusters of seizures and gale force winds. From inside our cozy home, I pine for milder weather, to be able to get outside and sink my spade into the earth and work my world into a more satisfying form. I ache to be rid of this benzo once and for all with the hope that Calvin's seizures—some of them likely due to the withdrawal—might be milder and further apart. But for now, I guess, we'll have to weather these unforgiving conditions and hunker down for a bit.

oscars, blogs and politics

If it weren’t for what I’ve written in this blog these past six-and-a-half years, many of you might be unaware of the struggles one faces raising a significantly disabled child who suffers from a chronic condition as heinous as epilepsy. This blog is a platform from which I can raise awareness, hoping, with my words, to inspire greater compassion and understanding for individuals and families who endure burdens sometimes beyond most people’s comprehension.

I write so parents teach their children not to fear or bully kids like Calvin. I write so society doesn’t shun families like mine. I write with the hope that folks think twice before judging us and others like us with our sometimes manic and often peculiar children. I write so readers better understand marginalization and inequity and then question the bitter contempt they, or others, hold for anyone who looks or acts or sounds different from themselves.

This morning, I read an opinion piece titled, To-Do List for the Actors and Actresses Who Want to Turn the Oscars Into Political Programming, written by a young white conservative man named Justen Charters. He starts by applauding Lady Gaga for not making her Superbowl halftime performance political. His comment made me wonder if he had paid much attention to the show. I mean, not only did she revel in singing what some might consider the Gay anthem, but she chose Woody Guthrie’s, This Land is Your Land, no doubt in my mind a rebuff of Trump’s attempt at disenfranchising so many in this nation.

Charters goes on to chastise actors and actresses for making the Oscar’s into a political platform, for taking the stage and speaking against racism, sexism, xenophobia, bigotry and the current administration's attempt to oppress and malign non-White, non-Christian people living in—and desperate refugees hoping to come to—this nation. Charters' suggestions that actors take their political advocacy outside of the celebrity event and instead make documentaries about immigrants, and go "to a place where women are in dire need of help” in order to fight for women’s rights, proves his obliviousness to actors' long and active history of championing against inhumanity (think Ashton Kutcher, Angelina Jolie, Eva Longoria, Olivia Wilde, Kerry Washington, Matt Damon and George Clooney to name just a few).

Mr. Charters ends by schooling celebrities to “move us by either making us laugh or making us cry, but do it with a personal story or powerful acceptance speech” rather than making political statements. But, I ask, what are political statements if not the embodiment of powerful personal stories?

I think of writers, filmmakers and actors—as much as musicians, painters, sculptors and photographers—as artists. To me, the best art is at its very core political. It not only makes us laugh or cry, it causes us to be introspective, then begs us to think about the world around us and to question our place in that world. Moreover, artist-actors are role models, as Charters points out in his opinion piece by citing millions of fans worldwide who pin up their posters and pictures on bedroom walls and “wait in line for hours just to get their autograph or take a selfie.” At the Oscar's, these role models have a unique platform from which to challenge injustices in the world, hoping to inspire others to be moved into advocacy. And as celebrities, their voices amplify what millions living here and fearing this new regime experience, feel and believe is unjust and immoral.

Since beginning my blog, I've been told by an angry troll that I shouldn't use it to talk politics. I've been told by a sibling that my posts are considered too long and depressing. I'm sure I have readers who bristle when I discuss my disdain for organized religion. But I've also been told by others—many who struggle with children like Calvin—that I am their voice because they are too shy, feel unable to express themselves adequately or who fear reprisal from friends and family if they do. So by writing this blog, I am able to amplify what hidden voices ache to say but hesitate. For them and for me, I will not self-censor. Along with sharing triumphs, I will keep talking about uncomfortable, unfortunate things, all things disability and all things epilepsy. And I will keep talking politics and injustice with the hope of turning just one mind in the direction of compassion, understanding and acceptance of others who look or act or sound different from themselves.

zephyrs

Back on my stump at the edge of what some here call the Riviera—the sunny edge of a sheltered field skirted by a white pine, hemlock, maple and oak tree wood—I close my eyes, resting my head against a trunk; Nellie leans into me dutifully. I sit here thawing out as the glacier at my feet recedes. Then comes my most favorite sound in the world: the rushing of wind through the tops of trees. Though it can sound a bit like distant breaking waves on a pebble beach or like crashing rapids in a canyon river, it has a unique quality, a building up from almost nothing, like hundreds of whispering voices. Inevitably, the sound of the breeze transports me back to my childhood and I remember that today, ninety-two years ago, my Dad came into the world.

Eyes still closed, I think of those old photos of Dad, tall and lean with a rippled gut and a balding head though barely out of his teens. I see pictures of him tan and towering over the other Naval cadets sporting a toothy smile, and I imagine him back at the Academy running his 4:28 minute mile. I see snapshots of him shepherding us kids at the beach, toting a fishing pole or a bucket of clams, see a faded one of us sunning at the base of a hot white Oregon sand dune.

In my mind I’m eight again, trudging onto a grey morning beach, wind plaiting my hair, damp sneakers chafing skinny feet. Dad is up ahead leading the way across the sandbar and, like a duckling, I following the dimples his steps have made. In one hand he carries a small shovel, in the other, a bucket. Clay-colored hip waders hang from suspenders off of his broad shoulders. A gossamer white t-shirt clings to his chest, catches a gust, then billows like a sail. As he gazes out past the breakers to the horizon, I wonder what he might be thinking.

Something stirs in the melting leaves nearby, breaks my trance, brings me back into reality where the light gleaming off of the snow is blinding. It’s hard to believe Dad has been gone these twenty-one years. I wonder what he’d make of my life, of our struggles with Calvin—of Calvin himself—of the regrettable sibling fuss over politics and money, of the pathetic state this nation finds itself in.

It's time to go home, so Nellie and I trudge across a vast whiteness marred by swaths of slushy tundra. I step into a pocket of water made by someone's boot. At home I find a squirrel trapped in our screen porch and wonder how it got there. I pick up pine boughs littering the yard from a recent storm. Over my shoulder the sun begins to set at a slightly higher angle, and I am grateful. Next to me, as a clock ticks away the seconds of life I can hear a zephyr rustle through the tops of trees and, just as suddenly, I am swept back to when I was two and Dad was forty, holding me between his knees.

cosmic clusterfuck

A full moon, a penumbral eclipse and a green comet aligned in some sort of cosmic clusterfuck this morning. Calvin suffered his second grand mal in just four days at the exact moment—three o’clock—when the comet was closest to the earth on a night when the moon’s pull was at its strongest this month. I wondered how many of the sixty-five million people in the world who have epilepsy had seizures simultaneously.

This last reduction of Calvin’s benzodiazepine has seemed to prove hard on him with four out of the past five days marked by seizures of some sort. I try to remind myself that it was just last month that Calvin went twenty-seven days between grand mal seizures, hoping that kind of stretch can repeat.

As the seizure abated and Michael got in with Calvin, I crawled back into bed alone, and like the moon’s gravity, I felt the pull of my blog, and began crafting the first lines in my head. I had some idea, when I wrote the words so long in my last post, that I couldn’t easily tear myself away. Writing it gives me a great source of fulfillment. It’s an intimate and reliable friend, a way to connect with others when I’m so often alone in this house with a boy whose thoughts are silent and unknown to me.

And so here I am again, who knows for how long or until when. I guess it will depend upon what tugs at me, whether the full moon or some other cosmic gravity in the world.

Photo by Rob Pettengill

thirteen

This morning at one-thirty, exactly thirteen years after my water broke forcing us into an ice storm and then me into an emergency C-section, Calvin had his umpteenth grand mal.

Incredibly, Calvin has made it to his thirteenth birthday. Unlike what most parents might think, the time has not flown by; caring for him has a way of slowing down the evolution of things. Moments are protracted. His development nears stasis. Our lives, in many ways, are inert. This time warp, though, is also a gift allowing me to practice mindfulness, to luxuriate in a square of warm sunlight, to contemplate the form of a shadow, to practice the Zen of chopping fruit, to study my boy and his every move, and to suspend myself in his embrace.

Today also marks six years and four months of writing this blog. Sixteen-hundred-and-twenty-two posts later I am a more fulfilled person and hopefully a better writer. In that span of time, Calvin has suffered a legion of seizures—possibly multiple thousands—ingested tens of thousands of pills, endured sleepless nights, bouts of misery, bruises and bloody noses and one broken foot. But for all his aches and pains my boy, it seems, is doing ever so slightly better with each passing day. I see it when he looks me straight in the eyes, when he makes new noises which give the impression he is trying to talk, when he accompanies me to a new store and doesn't grouse, when he pushes the grocery cart almost by himself.

This betterment I credit to our decision nearly three years ago to begin weaning Calvin off of his benzodiazepine, clobazam. He’ll be rid of it completely sometime late this year. He continues to improve as we inch toward his final dose as evidenced by his sound sleeping, improved balance and walking, his calmer behavior. I also credit the cannabis oils we’ve been giving to him since beginning the benzo wean. One is a THCA oil that I make myself with cannabis flower from Remedy dispensary, who I trust implicitly to supply healthy, safe, consistent herb for my son. The other is a CBD oil I get from the good folks at Haleigh’s Hope, who make an oil using a clean CO2 extraction method from a hybrid of high-cannabidiol strains known for their efficacy in treating stubborn seizures. My sense is that both of these oils have helped Calvin during his benzodiazepine wean by ameliorating his withdrawal side effects and/or keeping his seizures relatively stayed.

Calvin's milestones cause me to ponder my own stasis, and my itch to get back to a writing project I’ve neglected for too long. And so I’m tempted to hang up the blog for a spell so I can focus on completing the half-finished manuscript. It’s hard to give up the blog, though, even if only temporarily; It feeds my soul on so many levels, including the good mojo I get from beloved readers. So maybe instead of goodbye I should just say so long, and allow myself the freedom to check back in and post something periodically, or maybe I should change the format to be more like a photo Tweet. Who knows? In any case, I might not have the nerve to abandon it all together, so please check in, and when you do, I invite you to read older posts.

So, happy birthday my sweet boy Calvin, you who are my muse, my haunter of dreams, informer of my world. You inspire me in myriad ways. I'm so grateful to have spun around the sun next to one as pure as you.

Calvin's first day, Photo by Michael Kolster

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