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).

pray tell

Some of my lovelies have left at our door homemade applesauce, lentil soup with greens, garden hand balm, bottles of bourbon in brown paper bags, cookies, farm eggs and tomatoes and bouquets of wild and fresh-cut flowers. Pray tell, who left these beautiful blossoms in Calvin's baby pool the other evening when I was away? I send a thousand hugs and kisses your way.

going nowhere

When I graduated from college my parents gave me a set of luggage because they knew I had a desire to travel, both for leisure and, hopefully, once I landed my dream job. I moved home, worked an odd job saving everything I earned, then backpacked through Europe for seven months by myself, visiting nearly every Western European country, stopping and working in Paris for a month, and dipping into Turkey for five weeks. Two years later I returned to revisit Greece, explore what was then Yugoslavia, spent a weekend in Budapest then joined my brother, Matt, for a four-week adventure in Tanzania, Kenya and Egypt. My entire trip lasted two months. Ten years later, I revisited some of the same people and places that I had fallen in love with on my first visit to Africa.

In my early thirties, I finally landed my dream job designing apparel, which took me often to New York City, a time or two to London, and to Seoul and Hong Kong. Then, the year before Calvin was born, Michael and I explored Brazil for three weeks, the country in which he once lived, long before we met.

My desire to travel runs deep, perhaps, in part, because I’ve always been attracted to “other.” I have a passion for ethnic and exotic foods, for the hustle and bustle of crowded plazas, for the melody of foreign languages, for the customs, sights, sounds, music and aromas which are unique to different people in different parts of the world, for the beauty, love and wisdom in unfamiliar faces, for the kindness of strangers, some of who took me into their homes.

But since Calvin’s birth, and more so since we began treating his epilepsy with cannabis oil, I’ve been unable to travel much. In the past five years, I’ve been once to my high school reunion in Seattle, once to New York City for less than twenty-four hours, and to LA/San Diego for four brief visits with my mother who was in the thralls of Alzheimer’s until her death last October. It has been over a decade since I’ve visited what was once my beloved home for as many years: San Francisco.

In these past five years I’ve ventured virtually nowhere fun with Calvin and Michael; we can’t take Calvin out of the state because of the absurd and hypocritical federal prohibition of cannabis, even for medicinal purposes. Besides that, Calvin would be nearly impossible to find safe sleeping accommodations; he’s too big for a crib and he’d fall out of a bed and/or get out, fall and hurt himself. The kid is a veritable accident waiting to happen. I’m kind of amazed he’s made it this far.

In that time span, Michael has traveled and photographed in Virginia, Georgia and Pennsylvania for weeks at a time. He was gone for nearly a month when he drove all of his equipment cross-country to Los Angeles and back to photograph its famous river, stopping briefly in Albuquerque to visit friends. Last fall he spent ten days away on a faculty research grant shooting photos of Hawaii's parks and plastic beaches. He’s scouted, photographed and fished in Idaho and Wyoming and spent three weeks at an artists’ residency in Virginia. This fall he will fly to Verona, Italy to oversee the printing of his forthcoming photo book on rivers, and next spring he’ll be in Paris for a three-week residency and a solo show of his work. I don't resent him. Quite the contrary. I am thrilled he can make these things happen and that I can help. I just wish I could go with him.

As for me? I’m going nowhere. Calvin is too complex and difficult for others to care for long-term, and we can’t take him with us, in great part because of cannabis laws. He's even difficult to take on local day excursions because he isn't able to walk around by himself and often balks at doing so with our help.

My high school reunion is in September, but without a nurse to help Michael, I’ll have to miss it for the first time in thirty-five years. And though I dream of heading somewhere—anywhere—with Michael, and even with Calvin, I don't think it will be possible for me to travel in the foreseeable future.

But as I write this I realize I sound like a whiner. I say that because I sit here at my desk looking out on a gorgeous garden of my making, dotted with fragrant blossoms, bees and birds. I realize how ridiculously fortunate I am to live as comfortably as I do, and to have once had the privilege of traveling far more than a lot of people do. I realize, that from my own little hunk of this world, I can imagine, dream and create. I can pour my passions onto "paper" and into the earth. I can remember all of the exciting places I’ve visited, and recall the interesting people I’ve met, from Alaska to Amsterdam, Rio to Rome, Lisbon to Louisiana, Madrid to Mt. Kilimanjaro, and Belgrade to little, old Brunswick, Maine.

day five

Twenty-eight months into Calvin's withdrawal from his benzodiazepine, clobazam, aka Onfi, Calvin is definitely having more partial seizures than before we began the wean. The good news is that in the face of a ninety-plus percent reduction in benzodiazepine, his number of grand mals is holding pretty steady at just over four per month. It's the partial seizures that are becoming more frequent in the days following and in-between the grand mals. The increase isn't a huge one compared with two years ago, though it is substantial compared to several years ago when he went long stretches in between seizures but was a complete and utter raving lunatic most of the time on high doses of three powerful anticonvulsants, including an adult dose of clobazam (Calvin was only ten and weighed less than fifty pounds at that time).

Three summers ago, when Calvin's behavior and sleep were at their worst, and when I was in tears most days as a result, Michael and I decided it best to take Calvin off of his benzodiazepine and begin replacing it with cannabis oil. It was probably one of the best decisions we could have made. All it took was taking a serious look at the risks versus the benefits to his quality of life.

So, although Calvin is having several grand mal seizures every month, plus a half-dozen to a dozen partial seizures, his grand mals are now—at least for now—only at night where he is safe. His body is calmer, he is less hyper, not as loud and crazy, sleeps better, except when he is in the worst thralls of withdrawal, and seems to be learning to express himself better. All very good things.

What is daunting is that Calvin has been in this active state of benzo withdrawal for over two years and we have at least one year to go. What is exciting is the prospect of his seizures possibly diminishing once he is free and clear from the miserable drug.

So, though it has only been five days since Calvin's last grand mal, I remain hopeful. We've come to a better understanding of how best to do the benzo wean and avoid its most harmful effects—that being status epilepticus, hospitalization and nights of physical agony.

And so, we soldier on, in hopes of a better life for our family and our boy. Thank you, cannabis oil.

Photo by Michael Kolster

soldier on

In bed with him again, spooning, my arm draped across his little waist as I feel his chest rise and fall in peaceful rhythm. Moments earlier, his heart was racing as if to jump clear from his ribs, his brain lightly seizing.

My son is innocent and pure, knows nothing of the ugliness in this world, and yet he seems to feel its pain. Perhaps he channels its miserable convulsions. Still, somehow, he perseveres, he soldiers on.

As I clutch him, feel his smooth skin, smell his hair and breath, I feel blessed. Lying awake at four a.m. again, my thoughts wander to the mothers I know who’ve lost their children—Lidia, Cornelia, Susan, Christine, Debbie, Emily, Chris, Anna Karen, Betty, Kari, another Debbie, and Ilene—and as I mourn their losses, I feel a universe of gratitude for the chance to be embracing mine, though I wish I could end his malaise.

In the dim room, my mind shifts to others who lost a son. I think of Ghazala and Khizr Khan, the Gold Star parents of Captain Humayun Khan who was killed in the Iraq war, all decent, loving Muslim Americans who came to this country for a better life, then paid the ultimate price. The image of the solemn couple speaking at the Democratic convention challenging a repugnant Trump is seared into my mind—their sorrow, the the weight of having buried their child evident in their faces.

And as if their loss wasn't enough, the callous twerp who calls himself a man, who aims to be the next to lead this nation, rather than showing empathy, cowardly knifes at their open wounds for his own selfish gain and satisfaction.

I am not one to embrace hate, but I believe this growing loathsomeness in my heart is evidence that I may detest at least one: the manchild Donald Trump. In my lifetime I can think of few worse offenders. He has called Mexicans rapists. He associates all good Muslims with terrorism. He has endorsed the killing of innocents. He revels in the notion of torture. He has slandered nearly every race of people. He belittles and offends women and has been accused of rape. He says perverted things about his own daughter. He berates the grieving parents of a fallen American soldier. He mocks the disabled. Threatens any challenger. Incites violence. I’ve no doubt he feels serious contempt even for his own supporters. He’s a sorry excuse for a human. A petulant toddler. A coward. A wimp. He has no grasp of geography or history or geopolitical forces at play. He appears to care for nothing and nobody but himself. He’s a grade school bully. A charade of a man. A liar. A fool. A swindler. A fraud. A cad.

I truly believe that this lowlife possesses zero humanity. How can someone so crass and senseless, so hateful and contemptuous, so obscene, so ignorant and yet conceited, who threatens every liberty, be asked to lead a nation?

As I hold my son, my heart weeps for the Khan family. I embrace the couple in my thoughts, surround them with colorful, sparkling, virtual blankets of solidarity, love and admiration. I lift them above the fray of angry men, some of them no more than petulant children. Sunlight begins to creep around the blinds, and though my little sleeping bird—who gives me faith in most people’s better nature—has no voice, there is a morning chorus out there of those who do. So, for our children and other decent, loving, compassionate people, we must soldier on and defeat this miscreant who has an appetite for scorning the very people and things that make up our good nation.

Khizr and Ghazala Khan remembering their son, Captain Humayun Khan