fist of lightning

Lying on an Asian beach, a battery of black clouds crouching overhead, I glimpse a fist of lightning punching the horizon. It’s coming, the deluge, wind and sea spray brushing my cheeks. We know we can’t escape, he and I, the older brother of the youth I love. In his embrace, his moonface aglow, he leans in and kisses me. And I let him. And it feels right, feels good to be loved, yet it leaves me yearning for the younger in the pair of these doting ebony-haired boys, the one who stayed at home.

When the torrent comes, my companion and I duck into a nearby row of covered shops, their plywood walls tacked with trinkets, keepsakes, tinctures. In an instant, rain thunders down on corrugated metal roofs strung with plastic lights and paper lanterns sent dancing in the gale. My head throbs, so I scan the shops looking for something to dull the pain which skulks behind the sockets of my eyes. As the storm takes hold, midnight beachcombers scramble to find refuge, elbowing their way between us, wet trenches rubbing our faces, dank bodies breaking our fragile chain. And then I lose him, his hand snatched from mine in the crowd, his jet hair melting into a rolling black sea of crowns.

In the midst of my dream I'm slapped awake by Calvin’s jarring seizure scream, which sounds as if the fit is strangling the life out of him. I bolt to his room, peel back his bed’s safety netting, unlatch and drop its heavy panel. It’s only day two since the last big fist of lightning struck his brain—a smattering of smaller ones in-between—so I crack open a vial of rectal Valium and inject the mind-numbing gel to calm the storm, to break the chain.

As the spasms wane, I kiss my boy's neck and face. The dull ache in my head, like the thunderbolt is real, not dream. I throw back a couple of aspirin and climb in with my son. I rest my hand on his chest to feel its shallow rise and fall and, sometimes, feel its pause. When the clock strikes five, still dark outside, I think about the row of curio shops lit up in the night, and I wonder about the handsome Asian boys I dreamt about, and I wish I could unearth some magical potion that could help me harness the fists of lightning that plague our nights and raid my dreams.

Photographer unknown

a gentle spirit

A gentle spirit has come into my life

To make me see things I did not want to see,

To make me feel things I did not want to feel,

To teach me things I did not want to learn.

This gentle spirit has hurricane force

That picks me up, turns me this way and that,

And puts me down softly in a new place,

Always a new place.

I cannot return to the safe warmth I once knew,

It is gone forever.

Because of this fragile, gentle spirit,

Joy and sorrow have become intertwined

In a fiber of life that few can comprehend.

Because of this sweet, gentle spirit,

I can appreciate what is often assumed.

— Jan King 

Photo by Bebe Logan

a good thing i did

If not for my son’s half-dozen ridiculously manic frenzies, the windy drive north was uneventful. Rather than face each of his outbursts with frustration and impatience, which my sleep-deprived self is often prone to do, I resorted to embracing and kissing him instead.

It was a good thing that I did.

Our day at the fair was a decent one, not that Calvin pet the animals or giggled at the goat’s bleat or marveled at the midway or ate cotton candy from a paper stick; he did none of those things. But he did walk well, a bit, and seemed content in the borrowed stroller, and ate his cut-up bites of lunch and took his meds. Above us, low clouds at times obscured a harsh sun, and gusts of wind cooled our necks and kicked up dust at our feet.

The past eight days—besides a steady increase in eye-poking and these brief, hysterical spells—have been good ones for my son; he's been happy, content, had mostly restful nights and has been walking stronger on his previously-broken foot. I wonder if this somewhat calm, seizure-free stretch is because we briefly paused the taper in his benzodiazepine.

At the fair, while I gave Calvin his noontime meds, chasing each pill with a sip of juice, his eyes rolled back and fluttered several times in what looked like some sort of tiny seizures, perhaps the petit mal type. And on the way back to the car, Calvin did what I call his zombie walk, cooperatively and quietly strolling along in his dad's hand with a pale, blank expression on his face. I remarked to Michael that I’d seen this kind of thing the day before grand mal seizures.

At two-thirty a.m. the seizure hit, too early to give Calvin his morning dose of benzo to head off a subsequent fit, so we gave him the Diastat—rectal Valium—and watched each spasm slowly subside, watched our boy finally catch his breath. Fearing he’d expire in the night, I crawled in with him, though not knowing what I’d do if his breathing stopped or if I’d even wake up if it did.

For an hour I laid awake, eyes closed, while Calvin slept, my mind wandering. I thought of the college kids returning to town, their voices echoing happily down our street. I recalled our recent dinner with Henry and Hector, Michael’s former students whom I've grown quite fond of, and the bottle of bourbon they brought us as a gift. I wondered how Beth, Calvin’s former nurse, is doing in St. Thomas. I worried about Calvin entering Jr. High. I relived the day’s phone conversations with my siblings, thought about the tear running down my cheek while missing Mom, missing life before Calvin, missing sleep. I lamented things like the dying shrub, these weeks without rain, the smug, so-called Christian meme posted on a friend’s social media page asserting that people like me, good folks who don't believe in the god of Scripture, are doomed to eternal damnation. I bristled at the cad named Trump and all that he stands for, grieved the injustices in this nation—misogyny, bigotry, classism, racism. I mourned my losses and those of struggling families fleeing war torn places, and those exposed to earthquakes and viruses, heat waves and floods.

Finally, I drifted off to sleep and dreamt of my childhood friend, Gary, who in my dream was riding a bus with me when a detached door flew off and struck him hard in the head. He started to bleed and seize. I woke in a distressed state, my diminutive tween slowly rousing beside me in the bed, and I embraced him and kissed him.

It was a good thing I did.

Photo by Michael Kolster

summer storm

Summer storm falling on a red metal roof, fat drops raining in a steel pale. Let the tops of windows stay open. Feel the humid breeze. We need to cleanse these five straight days of fits, a Saturday choked with wicked spells. I hope tonight my boy doesn’t seize again.

Within twelve hours we give him Diastat, extra Keppra, extra THCA and CBD cannabis oils. I even try a gum-rubbing of THC to stop the barrage of fits. Still, they march from dawn until nearly dusk, his lips taking on the pale of twilight in eastern Maine. In desperation, I give him a tiny, one-time boost of his evening benzodiazepine, just 0.05 milliliters, suspending the gradual wean, white-knuckle hoping it will break the chain.

At night the rain pours, dampening the sound from our son's room next door. I get up to check on him every hour or more and to pull some windows closed. At three-thirty he rouses, restless, and I wonder if the storm system and its low pressure affect my boy. Michael climbs in and embraces him, and they soon drift off to sleep, the pattering of rain on the red metal roof, the seizures waning with the moon.

day seven hundred twenty

one: the number of days since Calvin's last partial seizure.
four: the number of days since Calvin's last grand mal seizure.
five: the number of consecutive days Calvin has had seizures this week.
seven hundred twenty: the number of days since Calvin's last conscious-onset grand mal seizure (one that starts when he is awake, not sleeping.)

As inevitable as I have always thought this day would be, it is still sobering to know that he broke that nice long stretch this morning.

Tomorrow we start back to day one.

some summer days

 

Photos by Michael Kolster

the trouble with benzos

Once in a while, I see glimpses of my son acting normal. By normal, I don’t mean he sees well or walks right or speaks words or is free from seizures. I mean that there are moments, typically soon after his late-afternoon dose of THCA cannabis oil, when he is calm and happy, when he doesn’t frantically snap his fingers, when he isn’t a raving lunatic, isn’t hyperventilating, isn’t poking the hell out of his eye, humming repetitively or madly rubbing his head. In these rare moments he is serene and happy, and I wonder—once he is completely clear of his benzodiazepine—if he’ll begin to be like this more often, be free from pain, discomfort, anxiety and malaise.

The trouble with benzos is manifold—so much so, that it's hard to know where to begin.

For starters, benzodiazepines are not designed to be used long-term, because habituation can happen rapidly, in some cases after just a few doses, causing the body to require a higher dose to maintain their desired effect. In other words, if someone is taking benzodiazepines for sleep or anxiety or seizures—common conditions for which benzos are regularly, and often cavalierly, prescribed—they might, over time, experience insomnia or anxiety or, like in Calvin's case, a re-emergence of seizures, requiring an increase in dose to dampen them again. For people whose brains habituate to benzodiazepines, this pattern can be unsustainable, eventually reaching harmful levels of the drug causing side effects that become intolerable.

Like other antiepileptic drugs, the side effects from benzos are myriad. They include, but are not limited to, headache, nausea, malaise, dizziness, double-vision, blurred vision, drowsiness, weakness, slurred speech, drooling, lack of coordination, ataxia, seizures, anxiety, insomnia, anorexia, hallucinations, gastrointestinal upset, trouble swallowing, respiratory suppression, agitation, restlessness, irritability, tremors, panic attacks, vomiting, sweating, flushing and psychosis. These side effects can also be experienced when weaning from benzos, particularly if withdrawing too swiftly.

Another problem with using benzodiazepines is the fact that many, perhaps even most, neurologists appear to be unaware of or misinformed about proper weaning. I've heard countless stories from patients and parents who tell me that their neurologist recommended twenty-five percent dose reductions, pausing only a couple of days or weeks between each large decrease. This rapid of a wean can result in agonizing, dangerous and protracted withdrawal symptoms including status epilepticus. In my research, I've come across information about a syndrome I wish I'd known about before putting Calvin on any benzos: Benzodiazepine Withdrawal Syndrome.

After some in-depth research about the syndrome I began Calvin's wean from clobazam, aka Onfi. Rather than rely on Calvin's neurologist, I relied on the Ashton Manual—which thought it doesn't name clobazam, it details other benzos and how to withdraw from them—and on experienced parents' advice on how to wean safely. Thankfully, one parent, Paige Figi, told me to switch Calvin to the liquid form of Onfi in order to manage the fractional decreases that would otherwise be impossible with pills. Calvin has been weaning from the drug for over two years during which I have quickened, slowed and paused the wean according to how well or poorly Calvin seems to respond; we have at least one more year to go.

At first, the wean was torture because we'd done it too quickly. Calvin experienced excruciating side effects, at times manic, hyperventilating and insanely finger snapping in his bed for hours on end. On a handful of occasions he writhed and cried in pain much of the night as if he were passing a kidney stone. During these times I couldn't help but recall what Stevie Nicks had said when she came off of Valium, another benzo: "It felt like my brain was on fire." Another time, Calvin had a serious cluster of seizures that did not respond to three emergency medications, landing us in the hospital after a seven-year hiatus.

The trouble with benzos is that many physicians prescribing them seem indifferent to their dangers and side effects, unaware of benzodiazepine withdrawal syndrome and unschooled as to how to wean them safely and effectively. As a result, patients risk addiction, dependency and, perhaps, painfully protracted withdrawals.

Having said all this, I do know that for some people, benzodiazepines are the only drugs that work to control their seizures and in some serious cases, they can be lifesavers.

Luckily, it appears that for Calvin, cannabis is a lifesaver. It seems to have mitigated the withdrawal side effects he experiences. It has seemed to help him sleep better, calm his body, and we believe it has helped limit the number of seizures during his benzo wean; his grand mals have held pretty steady at an average of just over four per month (though I have also fine-tuned his treatment in the wake of those grand mals by giving him extra Keppra, and/or extra THCA and periodic administrations of Diastat to limit seizure clusters).

Now, with over ninety percent of his clobazam dose gone, Calvin is calmer, more focused and generally happier. Since beginning his wean, his expressive and receptive communication has improved. Best of all, we don't see as many crazed episodes like the one below, a daily occurrence before beginning the wean. So, it would appear that with each decrease in benzodiazepine, our kid gets a little bit closer to what we might think is his normal.

Calvin experiencing the effects of too many antiepileptic drugs and withdrawal from benzodiazepines (You Tube video).