wonder

my little wonder brings me up and brings me down. he makes me smile. he makes me frown. he's the sweetest kid in the world. he's cute and handsome, incredibly peculiar and so messed up. sometimes he's unbearable. always, he makes me think and feel deeply. i wonder what emotions he's capable of feeling.

i wish i could get inside his head. he's impossible to figure out. i wonder what he dreams, wishes, needs, wants. i wonder what, if anything, he worries about. does he know he's treasured, resented, loved? does he have those feelings about us?

what does he experience when a seizure is coming? pain? panic? fear? euphoria? this morning he had his third grand mal in just thirty-one hours. in our grogginess, we decided to give him the rectal valium to stop the cluster. so difficult to know what is best when it comes to these drugs. what's too little? what's too much? have the drugs actually caused this clusterfuck? what if we had never given them to him at the start? would he still be seizing after all these years? have the drugs ruined our son? these are things i so often wonder about.

today will be spent parked on the faded green couch. my boy is mostly out of it—listless, unsteady, feeble. he's silent, calm, needy. my neck is aching. he keeps craning his toward the sun. i sense he's not yet out of the woods. more seizures coming. i can feel it in my bones. no wonder i so often come undone.

perhaps today i'll get some rest. maybe read a little. write some. stay out of the heat. cuddle my son. try to move beyond the worries that keep me up at night—regret, failure, lost opportunity, despair, dread. i'll keep wondering what goes on inside my little boy's head.

hope, dread, want

The day began large. Having been the second one in a row of seven that Calvin didn't wake to a seizure, I felt some semblance of hope. But as the day wore on, hope became dread, and dread became want.

Around noon on Sunday, we made our way north to the Union Fair. The hour-plus drive felt long, winding through Maine's back roads where farmland sprouts double-wides and barns, dilapidated antique stores, tractors, graveyards, and at least one shop devoted to selling guns. I tried to stave off a bit of anxiety amid the unfamiliar surroundings so far from home, tried focusing instead on feeding Calvin and thwarting his incessant attempts to stare at the sun.

It was a hot day to attend a fair, but the cloud cover helped for a spell. A nice lady selling tickets from a kiosk let Calvin in for free after she saw him spastically flailing in the backseat of the car. From the get go, Calvin was stubborn when asked to walk, a repeat of the day before. He'd take a step or two before collapsing in our grasp, getting us nowhere. Thankfully, we brought his stroller.

The highlight of our day's adventure was a ride on the Ferris wheel. This was a first for Calvin, for us as parents, and one I'd dreamt of for years. Calvin wilted in the sun waiting to board, and during the wheel's five revolutions, he didn't seem to register much of anything. He squirmed and squinted exhibiting discomfort. While Michael held him in the shade, I took in a bit of my surrounding world. The sky proved spectacular—a mix of puffy white clouds and wispy ones met the horizon. Compared with the West, this small part of Maine, save some rolling hills, is flat, with nary a vista to take in. In this landscape with its tall white pines and oaks, it's easy to feel stuck. Needless to say, at fifty to one-hundred feet, I ate it up.

Because of Calvin, we cut our fair-time short. The drive south felt more relaxed, any apprehension now behind us. Though we were at the fairgrounds just over an hour, and though it was far from Calvin's best performance, we had, I think, accomplished something, and it felt good to be heading home. On the drive, however, Calvin became increasingly agitated and, at one point, he let out a bizarre screech. I knew this was a bad omen, causing me some dread.

Once home, Michael gave Calvin a bath while I took Nellie on a short walk. When I came back, I heard Calvin upstairs crying as if he were hurt. After his bath, our boy had devolved into what I've previously described as night terrors. Calvin was writhing and crying, stretching and recoiling, shrieking and moaning as if he were being tortured. Michael and I guessed he had a migraine, so I gave him an acetaminophen suppository. Lauren stopped by, came upstairs and gave us some much needed tenderness and moral support. I shared my belief that these episodes are latent benzodiazepine withdrawal side effects. I'd read that Stevie Nicks, having withdrawn from years of prescribed benzodiazepine use had said that her detox felt like somebody had opened up a door and pushed her into hell. This is how Calvin sounded and looked.

After twenty minutes, when the acetaminophen didn't seem to be helping, I gave Calvin his nighttime dose of homemade THCA cannabis oil, except this time I gave it to him rectally. Within five minutes he was sound asleep. Half an hour later he woke up enough for me to give him the rest of his nighttime cannabis oil and his Keppra. He slept peacefully the rest of the night.

Unlike most seizures, rarely do I see with any clarity these pain episodes coming. In the past they've been while he's asleep, leading me to think they are night terrors. Now I know they are not. Regardless, they are dreadful. In the moment, I want for nothing but for Calvin to be at peace, to be set free from the torture and misery consuming him. I want for him to feel serenity, no matter how brief. I want him to feel the calm of looking into a sky with tranquil clouds which touch the horizon. I want him to feel hope, not dread, not want.

treading water

From the age of seven until twenty-two, I was a competitive swimmer. At fifteen I was the lead on my high school's 400 freestyle relay team at the 1979 Washington State swimming championships. We won the event and became All-Americans. In college, I swam a mile under twenty minutes, the 50-yard freestyle in 24 seconds and the 100-yard freestyle in 54 seconds. I placed second at NAIA regionals in the 400 individual medley having never swum it before. At least once in my life I swam nine miles in one day. On most other days I swam four or more miles, and lifted weights. I bench pressed 135 pounds. And while there were periods in my swimming career when I might have been considered decently fast, by no means was I elite, though I swam with and against a couple of Olympians.

All of my time in the pool made treading water effortless for me. I could tread holding both hands above my head for minutes at a time without tiring, and could sculpt the water with my hands well enough to keep afloat without using my legs.

Last night, after our son Calvin suffered a second grand mal seizure in just over two days, it occurred to me that living with the nightmare of epilepsy feels like treading water in quicksand. Relentless seizures make it difficult to keep my head above water—to get enough sleep, to hold anxiety at bay, to catch a breather once in a while, to keep my child safe, to avoid sinking in a sea of despair.

Before Calvin, a life immersed in competitive swimming presented some of my most difficult challenges. The pain was relentless. Dreaded and grueling workouts began at ungodly hours. Rest between sets was fleeting. The torture lasted for weeks, months, years. Competition proved to be nerve-racking. Defeats were dispiriting. Much of the time the suffering outweighed the joy. At times, triumphs were few and far between, leading me to wonder if it was worth all of the suffering. 

In a strange way, swimming has steeled me for this marathon of caring for my non-verbal, legally blind, incontinent, physically and intellectually impaired, chronically ill teenager. All those years in the pool taught me the meaning and value of commitment and hard work, made me strong, tenacious and resilient, and enabled me to discover just how capable—physically and emotionally—I am both in calm, clear waters and in raging seas.

Photo by Lisa Kolster

choices

Recently, while listening to a podcast about abortion, a sickening thought popped into my head: what if my obstetrician concealed the fact that my fetus, who became Calvin, was missing some—perhaps most—of the white matter in his brain?

Michael and I didn't learn of the grave anomaly until a follow-up sonogram when I was thirty-two weeks along. I remember a Boston specialist's surprise that the malformation hadn't presented in one of my earlier sonograms from Maine. It was her opinion it should have. Thinking back, I wonder if it had without us knowing.

With news on abortion trending, I relive the events of my two pregnancies. I revisit the initial weeks of my first one, and the dreaded feeling at seven weeks that I wasn't pregnant anymore. I remember the sonogram revealing there was no fetal heartbeat—confirming my suspicion—and the gut-wrenching decision to wait for my body to expel the miscarried fetus or to undergo dilation and curettage. I then recall my OBGYN moving her practice out of town and, when I got pregnant again, asking friends to recommend a new one. I relive the first few visits to see the new doctor, my request for a CVS test to check for genetic abnormalities early on, her resistance to assent, followed by her comment that if we found something terribly wrong with the fetus we would be "hard-pressed" to find a local doctor to provide an abortion, asserting her refusal to perform the procedure herself.

She offered no further discussion on the topic, no counseling, no support, no understanding, no offer to refer if needed. In my and Michael's minds, she was negligent and indifferent. In the end, a sonogram proved my pregnancy was in its thirteenth week, too far along to undergo the test.

In revisiting these moments from over fifteen years ago, I wonder if my obstetrician secretly knew early on—though concealed it because of her religious beliefs—that Calvin was missing as much as 80% of the white matter in his brain, a percentage that one pediatric neurologist cited after having studied my fetal MRI and sonograms. He later told us our child might never crawl, walk or talk. He never mentioned severe visual impairments or uncontrolled seizures as possibilities.

If Michael and I had known early on of Calvin's malformed brain, and had we known the dreadful extent to which it might impact his well-being and quality of life, his development, cognition, coordination, communication, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused by caregivers, would we have chosen to terminate my pregnancy? I really can't say. But one thing I do know with certainty: it is torturous to see Calvin suffer on a daily basis, to see him seize repeatedly, sometimes for several consecutive days, bite his cheek so bad it bleeds, see terror in his eyes and malaise on his face, be a veritable guinea pig for neurologists and me, endure the miseries of antiepileptic drugs and their heinous side effects, to see him hurt so needlessly.

Especially during rough stints, it's hard not to imagine how life might have been—perhaps easier, calmer, happier, less restricted, less anxious, less heartbreaking—if Calvin had never come into this world. I find myself resentful of still having to spoon-feed him and change his diaper after fifteen years. I get frustrated by the fact he can't do the simplest of things. I'm chronically sleep deprived from his frequent awakenings. One moment I lament his existence and the next I wonder what I would do without him. And though Calvin brings me immense joy at times, and though he is as precious to me as any mother's child could be, our lives have been profoundly strained by his existence. All three of us suffer, but none more than our sweet Calvin. Life with him, worrying about and watching him endure his maladies—despite, or perhaps owing to, the fact I love him immeasurably—is such a painful and burdensome endeavor that at times I regret ever deciding to have a child.

Yesterday, I read a post on social media accompanied by a photograph of a young woman in a long dark dress cupping her pregnant belly, head bowed. The post read:

I’ll be honest. This week’s news cycle has been exhausting and painful. 

This picture is me, taken the night before I terminated my pregnancy. My head is bowed and my hair covers my face, so what you don’t see is the grief, my face and eyes swollen from days of no sleep and constant weeping. After days of research and google and doctors visits and soul wrenching conversations with my husband about whether we would bring our son into this world knowing he would not survive. 

Women are not waiting until the third trimester and saying “oops, I changed my mind.” They have little outfits in drawers, maybe even have the nursery set up, they have picked out names. And then they’re having their hearts broken after discovering their baby will not come home. Please be kind. Please read our stories. Please research before you post.

None of these situations nor the feelings they induce are easy. There's no black and white, cut and dried logic to apply when pregnant women are faced with these dour choices. Panels of men in suits and ties meeting behind closed doors should not be deciding pregnant women's fate. Sometimes the most intimate and hopeful situations sour. That is when understanding and empathy come in, not hyperbolic, false propaganda and political posturing by men in positions of power who'll never be pregnant. We need to listen to women's stories and trust them to make the best well-informed choices they can when their lives turn upside down.

To imagine again that someone—a stranger to me—could have decided my fate and the fate of my family in such an intimate and tragic matter is chilling, dystopian, really. With the future of Roe vs. Wade now in jeopardy, and access to safe, legal abortion becoming harder in many states due to anti-choice efforts, our mothers, daughters, sisters, wives and partners are facing similar peril, when what they need most is love, understanding, support, and the ability to make their own choices.

riding the wave

At times he seems famished. At others, averse to eating altogether. My fourteen-year-old boy Calvin cannot tell me when he is hungry or thirsty. I have to guess, do trial and error, sit him in his chair to see if he wants to eat something. Even then, my boy is so restless due—I believe wholeheartedly—to his eleven years of taking benzodiazepines and the heinous and protracted effects of their withdrawal.

I wonder if we'll ever get my calm child back. I hope with every fiber of my being we do. But my sense is that my son has been ruined. Ruined less by seizures, I wager, than by pharmaceuticals, most notably the benzodiazepines which doctors prescribe so cavalierly—often ignorantly—for epilepsy, anxiety, muscle relaxation, and insomnia.

When Calvin was an infant, before he began having waves of seizures—at least obvious ones—and when he wasn't suffering from gastrointestinal distress or nervous system overload (he was born six weeks early with an idiopathic absence of a significant chunk of his brain's white matter) he was a calm child. He nursed peacefully, sat in Michael's lap happily, was content during walks in the stroller, sometimes bundled up against twenty-degree temperatures, sat patiently in his bouncy chair as we fed him, laid still in bed with us and on blankets in the summer shade. But at age two, when the seizures began, so did the meds. And when the meds began, as early as his first dose we saw him change and morph into the amped-up child we see today, and most particularly since the advent of his first of two benzodiazepines, Klonopin, when he was just three years old.

Michael and I are trying to ride the somewhat recent wave of more frequent grand mal seizures of late (he had one last night on day five), plus a string of days watching Calvin perseverate—finger snapping and rubbing, repetitive humming, jaw clenching, sun staring, disengaging—hoping he is "simply" going through a bout of benzo withdrawal that will soon dissipate. But it is scary to see Calvin in this kind of place; I worry that he'll get stuck and never change or improve, dread that my kid will never get back to his baseline functioning. After all, the drugs have ruined him before, kept him from returning to his best self behaviorally; it has been over a decade since I've seen and held that calm child.

But what do I know? Perhaps he is exhibiting sub-clinical seizure activity. Maybe he has a tummy ache. What kind of role are pubescent hormones playing? Somehow, though, I doubt these are what's at major play; my gut tells me the drugs are the culprit. In any case, we'll just have to ride this wicked wave and see.

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

for now he's saved

Night number three of as many fits. I’m awake, worried and weary, clutching my aching, spacey kid to my heart.

Gravity. Pull. Dread. A huge moon passes hidden overhead.

Every hour on the hour he seizes. A clock on a wall strikes two, three, four, announcing each bitter spell’s arrival. My boy’s heart pounds against my palm, his eyes full of fear, imploring me to save him from some brute force. As if some unseen hands grasp his throat, his breathing stalls, he fades, his lips pale to gray.

Nothing seems to stop this train. Nothing but a drug his body craves. And it does. And, for now, he’s saved.

Late morning brings a fourth storm that I fear will be the one. The one for which we’ll speed through sleet and rain to a dismal room with wires and leads, needles, anguish and pain. Instead we lay him on his side and we pull his diaper away. We inject the gel we hope will stop the wave. And it does. And he sleeps. And, for now he’s saved.

What might tonight bring? Today my boy lingers in some remote, unknown place, perhaps on the verge again. His odd half smile makes me quake. I watch and wait, stroke his face, kiss his neck, see him through a perfect lens, and never from too far away.

Photo by Michael Kolster

full moon cresting

At four-thirty yesterday morning, the full moon a day from cresting, Calvin's grand mal seizure ripped us out of deep morning slumber. I had suspected its arrival because of his agitation and manic outbursts on Monday, neither of which we've seen much of lately. He's also sick with a stuffy, runny nose, which, like most kids with epilepsy, lowers his seizure threshold. He was quite lackluster, a bit spacey and very quiet, so I kept him home from school. The entire day he seemed in a fog, confused and walking in circles. Looking at his wan face, I had a bad feeling he wasn't out of the woods yet. At lunch, he nearly choked on a bit of sandwich, and he kept wanting to be picked up, both signs a seizure was headed his way.

Calvin's nurse and I conspired over what extra measures to take, if any, to avoid a repeat the next night and morning. We decided to take no further action since he'd already gotten some extra Keppra that morning and the night before.

Until yesterday morning, we had all enjoyed Calvin's longest grand mal-free stint in over a year: twenty-one days. I should clarify that I'm counting days between grand mals since those are his most violent and obvious ones. His partial complex seizures, parasites to Calvin's grand mals that began appearing again late last year, are often difficult to discern causing me to wonder if I am mistaking them for benzodiazepine withdrawal symptoms such as rapid heartbeat, hyperventilation, hallucinations and agitation. Sometimes, however, they are unmistakable.

Calvin slept well last night until just after midnight, the full moon mere hours from cresting, when he awoke to a complex partial seizure. I knew it was a seizure because his breathing stalled, he made the classic swallowing sounds and stared vacantly at his fingers. I watched his lips turn pale and his face flush. Fearing a subsequent grand mal, I ran downstairs and drew up a syringe of THCA oil and squirted it into his mouth, a strategy I thought I'd try in an effort to break the early-morning seizure cycle. Alas, after going back to sleep for a couple of hours, Calvin shrieked his way into a full-on grand mal. I attempted to employ a measure Michael had learned from Noni, a sage he met in Hawaii, to stop the seizure by applying pressure to the space between his upper lip and nose using the first joint of my index finger. The seizure, which had been running its course for close to two minutes, stopped within seconds.

As Calvin whimpered in its wake, we changed his diaper and wet shirt then I crawled in next to him and slowly but surely syringed in his benzodiazepine three hours early. This measure has in the past prevented further grand mals. Though Calvin didn't have another grand mal, he had two partial seizures later this morning. During the second one, which didn't stop with lavender essence or pressure under his nose, I gave him six milligrams of THC rescue med inside his bottom lip; the seizure stopped on a dime.

At just before noon Calvin seemed to be slowly returning to baseline, save a crusty nose. His nurse arrived and, seeing Calvin doing better, I took Nellie to the fields. On the way back I got the dreaded call; Calvin had had some sort of non-convulsive seizure, his lips turning blue, his eyes rolling back into his head, after which he wanted to fall asleep. Running out of options to stop the cluster of fits I decided to try giving him an extra dose of the new CBD oil we'd started using two weeks ago. Afterwards, he slept for thirty minutes or so and then, shortly after getting his four o'clock THCA dose, he had another partial seizure, perhaps before the ingested oils had had enough time to kick in.

Bent on avoiding a trip to the hospital I racked my brain for any maneuver we could use to prevent the cluster of partials rolling into a prolonged grand mal. I remembered I'd given Calvin his benzodiazepine three hours early, at 3:00 a.m., so at 4:30 p.m., an hour and a half before his usual dose, I gave him his clobazam and knocked on wood.

Now, the full moon having fully crested at noon, its gravity tugging hard on my son's delicate brain, I'm hoping Calvin's seizures, like the beautiful orb in the sky about which I'm so conflicted, will soon begin to wane.

Photo by Michael Kolster

thirty-six hours

Today I saw a six-minute film about emergency dispatchers. As I watched it, I remembered the first time, of what would become dozens of calls to 911, that Calvin had his first grand mal seizure when he was eighteen months old. I remember the fear and panic I felt not knowing if the seizure would stop. Ten-and-a-half years later, every time Calvin has a seizure, I sit by helplessly wondering the same thing.

It has been a rough thirty-six hours, starting yesterday morning well before dawn when Calvin woke up with ants in his pants seemingly needing to seize. I say the word need because, like an earthquake which releases the pressure of tectonic plates, after a grand mal seizure my boy’s brain seems to reset to its more serene state.

Dreading the seizure, I gave Calvin his benzodiazepine two hours early plus part of his morning dose of Keppra. By breakfast Calvin was stomping, screaming and finger snapping like mad, then spacey at times, so I gave him an extra half tablet of Keppra and sent him off to school, thinking my strategies would delay the seizure a day or so.

Still wearing my morning sweatpants, I put Nellie on the leash and trudged to the fields where I met Lauren and her dog. As we strolled we talked a bit about racism and white privilege, sexism and the presidential contest, then on our way home I got a call on my old Nokia cell, the phone reserved for urgent Calvin calls. He’d had a seizure at school.

Thankfully, it wasn’t a grand mal, but still, I rushed home, threw on some jeans, tied my dirty hair into a bun and raced off to retrieve my boy, his elementary school not five minutes from our home. As I entered the building, one of the secretaries noted my worry, so she fled to the door handing me a visitor's pass so that I didn’t have to stop.

Though I wanted to, I was conscious not to run down the hallway and instead was greeted by two small boys. One of them wondered why I was there; he recognized me from a visit I’d made to his class last fall to talk about Calvin and epilepsy.

“Calvin had a seizure,” I said, then asked him to remind me of his name.
“William,” he replied, and I remembered he'd told me his brother has epilepsy.

The other boy, a cute, chubby third-grader, responded with concern.

“Your son had a seizure in school?”
“Yes,” I said, and asked if he knew my boy.
“No, I don’t know Calvin.” He went on to say, “Tell him I hope he feels better.”
“Thank you, I will.”

At home Calvin seemed to do slightly better after each round of medicine and cannabis oil. Even so, I couldn’t shake the feeling that we were in for more, especially considering his odd behavior and, at times, the spacey and pained expressions on his face.

Just after midnight this morning Calvin awoke agitated again. Fearing an imminent seizure, I gave him another half tablet of Keppra, and when he had a partial seizure at two o’clock I drew up a syringe of THCA cannabis oil, squirted it into his mouth and chased it with some juice. Eventually, he calmed down and slept with his arms around my neck until four a.m. when he again awoke in an inconsolable state. I managed to give him his benzodiazepine early, and while that helped, he never went back to sleep.

This morning, right before the bus arrived to take him to school he had a brief fitful attack. It wasn’t like any seizures I’ve seen. Unable to rule it out as having been one, and my gut saying it probably was, I popped yet another half tablet of Keppra in Calvin's mouth and sent him off to school; if this is going to be the new normal—and I'm not saying it is, but it does seem to be trending—as much as it makes me feel uncomfortable, I can't keep Calvin home every day he has a non-life-threatening event.

He’s at school now. His teacher and aid say he's being somewhat quiet yet insistent on putting his fingers in his mouth and slamming his forehead into his palms, which I’ve begun to sense are harbingers of an impending seizure, if not some kind of seizures themselves. Good news is it is day eight and so far we seem to have thwarted the punctual, now weekly, grand mal. Bad news is I know it is still to come, and when it does I'll be sitting by helplessly, wondering if it's going to stop, wondering if I'll have to call 911.

curses on the day of the dead

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

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

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

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

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

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

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

Photo by Michael Kolster

consolations

I didn't want to believe it, but the day after Calvin woke at 4:00 a.m. to a seizure he already showed signs of an impending one: hot red ears, whining, rashy chin, finger snapping, dropping down, seizure breath, flailing and screeching, bloody nose, stubborn, strange laughter. Unfortunately, I was right, and his seizure scream woke me this morning, again at 4:00 a.m.

It was a febrile seizure, his rectal temp of 101.4 degrees slightly higher than one he'd had yesterday afternoon. In the wake of the six-minute convulsive seizure, I stripped him down to his t-shirt and diaper, gave him acetaminophen for the fever and gave him extra cannabis oil from a syringe I'd prepared yesterday expecting I might need it even though it was only day two. Calvin fell asleep fairly quickly, which was a good omen, though he shuddered and shook for the good part of an hour in what we call post-ictal aftershocks.

The fact that it was a febrile seizure is a consolation of sorts, that there was an obvious trigger: an illness. But I'm still vexed by this recent spate of seizures and dreading another trip to the emergency room. I must keep in mind that for the past five-and-a-half months Calvin has not had a daytime tonic-clonic (grand mal) seizure. For now, he suffers them only while he is asleep.

Perhaps the fact that my eleven-year-old boy is growing like a weed, and is likely experiencing concomitant hormone changes, is contributing to the stress on his body that can trigger seizures. So, this Friday I'll be driving up to our dispensary to pick up some flower for my seventh batch of THCA oil plus a batch of CBD oil that is more concentrated than the one we are using and therefore easier to administer at higher doses. Currently, Calvin is taking in twelve milligrams of CBD per day which is only about 0.5 mgs per kilogram of his weight. Some children are taking as much as 2.5 mgs CBD per pound of their weight, so Calvin has much room to move if need be, which is another consolation.

A week ago, Calvin had seemed to have recovered from his bout of status epilepticus which had put him in the ER for twelve hours having endured four emergency seizure medications in an effort to stop repeated seizures. Last Thursday he seemed to be feeling good enough to go bowling with his ed-tech, Mary. I went and watched and snapped a few shots to show Michael, catching a smile or two from our boy, which is the best consolation of all.

two peas in a pod

Tuesday 7:00 a.m.

I’m sitting here in Newark airport sipping coffee during my three-and-a-half hour layover after having taken the red-eye from San Diego. Michael’s phone call came in just before seven a.m., startling me out of a dead sleep that I managed to get with the help of some ear plugs, the puffy jacket Macauley gave me and two padded airport seats facing each other. Calvin had done the dreaded thing and vomited his morning seizure meds, so Michael had redosed them. A few minutes later Michael called telling me he vomited again.

At the exact moment my eighty-five-year-old mother had been ramping up to have another panic attack at home in San Diego, shortly before I kissed her goodbye, my ten-year-old son Calvin was having a seizure back in Maine. Mom managed to dodge the bullet. Calvin was not so fortunate and had a second seizure several hours later, then a third and possibly others.

Back in San Diego I had learned that my mom’s panic episodes have been occurring more frequently, perhaps the result of what we think was a November stroke, perhaps simply because that’s how Alzheimer’s rolls. During these events Mom hyperventilates, seems overly confused about where she is and disturbingly cognizant of her fears. I'm told they happen when she’s had too much stimulation: lots of activity, looking at photos from her past or at pictures on the computer—perhaps even Skypeing. They are heartbreaking to witness. Yesterday, I’d taken her to the park twice for a change of scenery, to get her blood and lungs moving and to keep her body in the best shape possible to avoid a fall. And, since we can’t leave her alone in the car anymore, I’d also taken her into a convenience store to pick up a few supplies. My visit, in and of itself, might have been enough to trigger an attack.

Calvin's seizures are triggered whenever he gets sick, even the common cold can induce them. With the help of two cannabis oils—one CBD, the other THCA—we’d managed to keep the seizures at bay for twenty-one days even though he’s been sick with one virus or another since before the holidays. But his little brain and body finally succumbed to the winter assault, and he crashed last night.

Tuesday Noon

Finally arriving home just before noon, having been shuttled from the airport by Lucretia and her husband and after being smothered with kisses from a very excited Nellie, I enter Calvin’s room just as he is waking. Michael, who is there sitting in the dark with the shades pulled, gives me a warm welcome. He tells me Calvin has been waking, crying, vomiting and falling back to sleep every fifteen minutes since morning. I turn to Calvin and see his eyes rolling up into what looks like a complex partial seizure. Fearing it will turn into a grand mal, and this being at least the third in a cluster, we lift him out of bed and onto his changing table where I give him the Diastat rectal Valium. Slowly, the color seeps back into his lips and pale face, his eyes relax and just before he falls back to sleep I give him his afternoon seizure meds in a spoonful of yogurt. This time, he keeps them down.

It's not quite 10:00 a.m. in San Diego, so Mom is still asleep. She sleeps a lot lately, probably because of all that ramping up mania, like Calvin before a seizure. I slip in next to Calvin as he sleeps and I remain there much of the day while Michael cleans up and walks Nellie in the bitter cold. When I kiss Calvin's head I realize it's the same way my mother kisses me, and I think of how similar they've become. They're like two peas in a pod, I think, my mother and my son, snuggled securely into their little husks of lives—small, sweet, green and alive.

Calvin and Mom, February 2005

tempest

For days on end the sky soaks the earth, its greyness punctuated only by a smattering of crimson, orange and yellow leaves still clinging to the trees. The pall of swollen clouds belies the time of day. Is the barometric pressure low? Is a full moon nigh? Is it the benzo withdrawal? Whatever it is, I dread the tempest that is coming to claim my son.

By nightfall Calvin recoils into his aura, or perhaps into his coping mechanism. He’s not attending to anything or anyone beyond the snapping of his own fingers in front of his face. He juts his jaw in a way that makes him hardly recognizable. Michael is gone. The car’s instruments are on the fritz. A virus is lurking. I step into a deluge. My broken umbrella nearly caves. The wind throws sheets of rain sideways. I can't see where I am going.

All night long the white noise of the downpour helps me sleep, but just before dawn, when I think it has let up, I hear Calvin screech, so I run.

“Seti!” I call to my friend who is asleep in the next room, “I need you!” She comes and I ask her to time the seizure, which is violent and scary and shows no signs of stopping.

“He’s so pale,” I lament, and I kiss him several times on the neck.
“Breath, Calvin!” I tell him, and I kiss him some more, then I ask Seti to stay with him while I fetch the cannabis oil.

He’s still jerking when I part his lips to drop in the liquid gold. Using my finger I rub the cannabis oil well into his gums. I want it to stop the seizure. I don't want to use the rectal Valium. A few minutes later Calvin whimpers and begins to move his hands to his mouth. I ask Seti how long it was.

“Six and a half minutes,” she tells me, and I begin to cry.

She hugs me, then helps me transfer Calvin’s limp body from the bed to the changing table where I give him a new diaper and pajama pants, take his temperature and give him two acetaminophen suppositories for the ranging head and body aches I know he’ll suffer when he awakes. Then I crawl in next to my boy and spoon him as he shivers, and Seti turns out the light. Pressing my hand to his chest I feel his birdlike heartbeat. The tempest hasn't let up. I silently rage against it, while at the same time hoping for the universe to bring us clear skies and, at the very least, a little balance.

fear, dread and loathing

My son’s epilepsy has changed me, made me worrisome and fearful. In many ways it has shrunken me like a wool sweater in boiling water, shriveled my nerves into a tangled, crumpled mass of fibers. I sense that fear and dread in my posture, feel my shoulders cinch up around my neck as if I were pressing into a gale-force wind. I feel my nerves bunch and knot around my bones. There’s a constant low drone in my head, my blood, like the nearly imperceptible but real buzz of a solitary bulb glaring in its socket.

I don’t remember being afraid much as a child, only at night on lonely walks down our unlit gravel lane headed home from Monica’s house. Fear quickened my steps and, as adrenaline fed fear, I’d launch into a full-out sprint round the bend in my driveway as if demons were swiping at my heels.

But I wasn’t afraid of scary movies, Hell or the end of the world. I wasn't afraid to sing solo in front of the entire school, wasn’t afraid to talk to strangers, go to the dentist, catch snakes and frogs, break up with boys, jump off of cliffs, swim past the breakers, sneak out of the house, drive ninety miles an hour, admit fault, endure pain, drop out of college, cold call, tell the truth, ask for help, backpack alone, explore foreign countries, converse with people whose language I didn’t speak, talk to the homeless, reveal my weaknesses, trust strangers, challenge authority, quit jobs, face adversity, eat food I didn't recognize, go to parties alone, move to new places or make new friends. I wasn’t afraid of any of it.

But epilepsy scares me. I’m in constant dread of my son’s next loathsome seizure, looking over my shoulder as if half expecting a lurking thug to whack me over the head. I jump at loud noises, cringe at Calvin’s odd behavior, flounder in angst and thrash in the obscure waters of antiepileptic drugs and their side effects that render my son a zombie-lunatic much of the time.

Because of epilepsy I never truly relax, and the fear, dread and loathing has, in some ways, become etched into my being, perhaps changed me forever. Though regrettable, I imagine this kind of fear and dread to be no less than a thousand-fold for the parents and families of the Sandy Hook Elementary School victims or for the parents of kids with catastrophic epilepsies such as Dravet syndrome. And so I make my best effort to put things into perspective and to understand that my former state of total calm is little to have given up, at least for now; I still have my child and my child still has me, and for that I am eternally grateful, even if it's sometimes scary.

Originally published last December.

photo by Michael Kolster

before sunrise

Pitch black outside, frosty cold and damp, the sun not having come up yet. I sink my chin into the ruff of my winter jacket, fighting sleep, fists shoved deep into my pockets. In the back seat of Pam’s beater Nova, I’m nestled in next to my buddies, Lidia and Katie, tracing smiley faces on the steamed up windows. The dots I’ve made for eyes melt into tears.

We idle silently in darkness as other cars begin to arrive, each shining its headlights into our warm interior, square patches of light shifting and panning over our tired faces. We wait for Coach to arrive and unlock the door, secretly hoping he won’t show so we can go back home to bed because we need our sleep, which is perpetually denied. With boyish bodies, narrow hips and flat chests, we are fourteen, but on our way to making the change.

Undressing in tired silence, we strip down to the chlorine-bleached swimsuits we’d slipped on under our school clothes before dawn. The tile floor feels cool and slick. We dread what is about to happen—at least I do. One by one we saunter out to the pool deck, snap on our swim caps, tuck in our hair, adjust our goggles and peel off into the tepid water. The first plunge is a shock, but then we get moving, creating a swift eddy within each narrow lane. The water tastes like soda ash and sweat. Soon we feel the pain—the pain of burning lungs and muscles starved for oxygen, the ache of churning limbs gone miles given little time to rest and cling to the gutter. We watch the clock, which with its large flat face watches us—mockingly—its austere second hand mercilessly sending us off with only moments to catch our breath. We repeat this pain after school. We repeat it the next day. We repeat it the next week, the next month, the next year, and the one after, and the one after, and the one after. We are aquabots. We are jocks. We are mermaids. The water is our second home. It softens us and hardens us at the same time. We become it—malleable, forgiving, resistant, reflective.*

These days I experience much of the same, waking before dawn, sleep deprived, to see the sun just beginning to come up, dreading what is about to happen, shocked by the sound of Calvin's first whine. The clock labors along as we pace back and forth and back and forth between bookcase, shutters, table. I taste the bitter pill of monotony, worry, frustration, of what has, in great part, become my life. I repeat it all the next day, the next week, the next month, the next year. My boy Calvin softens me and hardens me at the same time, my dotted eyes sometimes melting into tears.

*Excerpt from a work in progress temporarily titled Memoir.