8.14.2017

white blight

For the past several years I have visited my son's school to tell his classmates a little bit about him and his epilepsy and explain why he can't talk, doesn't walk well, still wears diapers and behaves so unusually. Then, I open it up for questions, offering to answer absolutely anything the students might want to ask. At the end of each conversation I encourage the kids to be kind to Calvin and others like him. I tell them that Calvin is the best person I know because he doesn't have a mean bone in his body and, most of all, he doesn't discriminate. Then I broaden my appeal, asking the students to show the same kindness to others who may look, sound, dress, speak, behave, dwell or worship differently from themselves.

"Because inside we all have the same heart," I tell them, reminding them that none of us were born knowing hate. I make sure to look into each and every one of their solemn faces so they know I am talking to them.

When I first heard of the mob of white supremacists descending upon Charlottesville brandishing torches, some wearing paramilitary garb and carrying weapons to protest the removal of a confederate icon, I cringed. I read that one of the white supremacists deliberately slammed into a crowd of counter protesters with his car, killing a young woman and injuring scores of others. I read accounts of black men being beaten and bloodied with poles, of anti-fascists being pepper sprayed, and saw a woman being sucker punched in the crowd. The gang was chanting, "white lives matter," and "we will not be replaced," and "blood and soil!" The latter made me marvel at their blatant ignorance and the irony of their words considering this nation's soil was never theirs; men like them slaughtered this land's native people by the millions, raped their women and torched their villages, wrongfully claiming the blood-soaked and sacred soil as their own.

Inevitably, when I hear of these kinds of atrocities wreaked by the least oppressed demographic in the country—white men (and by the way, some of my best friends are white men)—I think about how the Nazi's, prior to coming for the Jews, systematically murdered people like my beloved son who were deemed a stain on the Aryan race. I also think about some of the folks I've gotten into debates with about white privilege. Over and over, I hear the same flabby platitudes and baseless bootstrap theories—that they've worked their asses off for everything they've achieved. It's not that they haven't worked hard, but their success wasn't achieved in a vacuum. Some can't seem to admit that the color of their skin has given them every advantage in the playbook: the benefits of white-sounding names on resumes; the benefit of not being discriminated against by teachers, employers, loan officers and landlords; the benefit of not being pulled over by cops just because of the color of their skin; the benefit of not being suspected of breaking into their own homes; the benefit of not being seen as a threat and a menace, unjustly maligned by society. While I can't know why they hate—and perhaps they don't even know—I deeply lament their willful ignorance and inability to comprehend what it means to be truly oppressed, and I resent their militant tactics, particularly because they're not oppressed.

Photos of the mob in Charlottesville reveal angry white men, some ratty old-timers hiding behind masks and shields and guns, others who look like your average frat boy, each one essentially threatening that their privileges—the same ones that most of them likely deny enjoying—best not be taken away. It would seem that they fear being treated like the oppressed masses—African Americans, Japanese Americans, Native Americans, immigrants, Latinos, non-Christians, LGBTQ people, women and other minorities—have been treated for centuries in this land of white male politicians and policies, banking industry, criminal "justice" system, law enforcement, white prosecutors and jurors and wardens. Had these angry thugs carrying torches and semiautomatic weapons provoking peaceful protesters in Charlottesville been Black? We can be sure things would have turned out differently. In this nation, white terrorists carrying weapons—yes, this is what terrorism can look like—strut our streets with impunity.

And, yes, The Ass in the Oval Office has fueled their flames and incited violence time and again.

No doubt in my mind, the weakest in this country are white supremacists. Insecure and small-minded bullies, they scapegoat others in a feeble effort to feel better about themselves. They are so incurious as to fear other without first knowing what other is, and to baselessly discriminate, something that my sweet, innocent son Calvin doesn't do, and wouldn't if he could utter a word.

twitter screen shot

8.10.2017

open invitation

I'm bracing myself for a three-and-a-half-week stint taking care of Calvin mostly by myself. Today is his last day of summer school which, though it's a measly three-hour day, four-day week, one-month session, is something that helps sustain my relative sanity in that it gives me time to walk the dog, tend to the garden and write a little bit before my high-maintenance child comes home on the bus at 11:30 a.m.

Michael is working diligently on photo submissions and on his next publication (he is the most prolific artist I know), and is already busy with administrative duties as head of the art department at the college. Even so, he helps me in the early mornings and evenings, and cooks all of our dinners. But the days are long, monotonous, not altogether fulfilling, and perhaps even a little lonely. I'll do my best to take Calvin places he knows like the grocer, the health food store, the donut shop, the coffee shop and, now, the gelato store, which pretty much define the physical parameters of my entire world. I wish he enjoyed and tolerated new places more than he does and would walk further without balking and dropping down. I've got to continue pushing his boundaries . . . and mine; we've got to grow.

But in case we are housebound due to seizures and/or malaise, this is an open invitation for friends to drop in for a cup of strong coffee or an early-evening cocktail and/or to join me and Calvin (in his stroller) while I walk the dog. I make a mean cup o' joe, and the garden—though the lawn looks and feels like straw—is lovely this time of year, especially in the morning and early evening around five p.m.


Please come on by.

Photo by Michael Kolster

8.03.2017

(ship)wrecked

When I spend long spates of entire days taking care of my thirteen-year-old son Calvin, I'm apt to become testy at times. Monotonous as his care is, my patience sometimes wears thin enduring his drool, his shit, his manic fits, his restlessness, his incessant sun-staring, his sticky hands tearing out my thinning hair, his penchant for putting his fingers all over my face and into my eyes and mouth, his desire to butt me when he presumably doesn't feel well, his wont to drop down refusing to walk when and where I need him to go.

Add to those hourly irritants stepping in Nellie's diarrhea then nearly missing her pile of barf in the yard on a morning after having had little to no sleep because of Calvin's grand mal. I feel wrecked . . . and trapped and going nowhere fast and neglected and bored and exhausted and dirty and resentful of what often times feels like an utter waste of two lives.

And then I watch this gripping op-doc (also shown below) which brings me to tears, slaps my ungratefulness in the face, and makes me wonder why we all don't behave like the benevolent man at the helm, why we don't embrace all humanity in its gorgeous and various forms.

I finish watching the short video, wipe my eyes and breathe deep, having been snapped out of my pitiful brooding. Though it's hot as blazes, I step outside and manage to tug Calvin along to Woody's house three doors down. Calvin rings Woody's doorbell (as always with much assistance), then sits in Woody's rocker and eats the usual piece of chocolate which we regularly pilfer from his candy jar. After a typical three-minute visit, Calvin insists on making his customary stop at Woody's garage to slap and bite its vinyl siding in the same, drool-stained spot he has for years.

As I tug Calvin back home, I hear a catbird singing its heart out, and see all sorts of other birds bobbing and flitting by. I get a glimpse of a salty, floppy-eared black lab poking its muzzle out the window of a passing car. I hear the unmistakable racket of polyurethane wheels on asphalt and turn to see a handsome, college-age skateboarder (I love skateboarders) in a floppy hat, rolled-up summer khakis, white tank and sneakers, and a billowing shirt sail by flashing me and Calvin a Pepsodent smile. Once home, our friends' daughter Zoe comes by to walk Nellie, just as her brother Felix, who is six weeks younger than Calvin, had done the day before. Later, I see sweet Nellie—the best dog in the world who we can afford to feed and keep and who brings us immeasurable love and levity—eating her own barf, and at first I get angry. But then I think about that video—those suffering men, women and children who've been pushed to the very brink of existence and, having left behind virtually everything they know and own to escape war or rape or famine or massacre, risking their lives and the lives of their children to find a better way—and I have to laugh at my pathetic self and my handsome wreck of a child when I remember how extraordinarily lucky we are, and that compared to most, we are swimming in the calmest of seas.


7.30.2017

wanted: ├╝ber nurse

Wanted: In-home nurse who has his/her shit together. Part time. Must be punctual, reliable, professional, intuitive, confident, helpful, conscientious, receptive, strong, patient, understanding, focused, observant, vigilant, respectful, transparent and honest. Must like children and dogs and tolerate watchful mothers who work from home. Must be well versed in the art of mindfulness and not averse to monotony or dirty diapers. Preferably available to work some Saturdays and some evenings in a comfortable home surrounded by beautiful gardens with an adorable, affectionate, non-verbal, on-the-go, significantly disabled thirteen-year-old child with intractable epilepsy named Calvin.

Calvin with his uber-nurse, Beth

7.27.2017

in the woods

I had a good cry the other morning, better than I've had in a long time, perhaps too long. It felt like olden days, back when Calvin was an infant and I was just beginning to understand how messed up he was likely going to be, back when his developmental gap was widening by the minute, back when I'd cry in the woods on most days.

Hot tears rained down my face, kissed by the cool damp of the surrounding forest. I let them flow. I was alone, my face a grimacing, dripping mask, my breathing more like gasps. Nellie waited for me on a knoll in the shade where I sat myself on a root. She licked the tears from my face. I lingered there with Nellie, the birds and trees, and I let my tears dry in the wind.

On the stretch home I lamented Calvin's inability to do most anything without at least some assistance, and most things not at all. He can't independently walk, talk, trike, eat, drink, pee, shit, bathe, dress, undress, run, play, climb, sing, dance, brush his teeth, comb his hair, play with toys appropriately, cover himself up at night or get out of bed. I grieve the loss of what I thought parenthood had promised—seeing my child engage with peers, talking with him about the ways of the world and about what it means to be a good person, going with him to the movies or out to dinner or on a hike or to a concert or go fishing or swimming or biking or shopping or walking in the woods.

Some of my pain rained out when I wept, and more so during a brief visit with my neighbor and dear friend, Woody. In his eighty-five years he has experienced his share of grief and loss, and he held me as I shed a few more tears.

"It'll get better," he said. Then, as if he knew my stance on these matters, he corrected himself by adding, "it might not get better, but everything will be okay."

My day improved after a visit from a friend and a successful trip to the grocer, the gelato place and the health food store with Calvin. But my boy soon wilted, becoming pale and spacey, omens of worse things to come.

That night, after dining out with my homie Sarah, whose boy Jacob is quite like mine, Calvin had two grand mal seizures in the span of five hours. After the second one, at two-thirty in the morning, he writhed in agony for hours. Acetaminophen and acupressure did nothing to assuage his suffering, which I think may have been a mix of migraine and gastrointestinal pain. The event was identical to bouts he'd endured when we first began weaning his benzodiazepine over three years ago. I wondered if it was due to the abrupt withdrawal of vitamin B6, wondered if I'd given him too much THC, wondered if it was the benzo withdrawal, even though we paused it over a month ago. In my inability to do anything else to help, and short of the loathsome idea of taking him to the hospital, I kept telling him soon he'd feel better; experience told me so. Finally, at dawn, just as the birds began singing in the woods, Calvin settled and went to sleep for an hour.

Today I read on social media that coming off of vitamin B6 can look a lot like benzodiazepine withdrawal. Indeed, its sudden elimination may have caused Calvin's cannabis and/or his benzo blood levels to abruptly plummet, causing a kind of withdrawal all its own. I also understood that Calvin's frequent tachycardia may be due to vitamin B6 toxicity and/or the THC rescue med I used twice that night. Next seizure—and there will be one—I'm going to try using only frankincense to stop it and prevent more. I'm also going to extend the pause of his benzodiazepine wean, holding at 1.5 milligrams per day for now because he's had eight grand mal seizures in the past thirty days, which is nearly double his monthly average. My hope is that once his B6 levels off the fits will calm down, and though I doubt they'll get markedly better anytime soon, perhaps everything will be okay, and maybe some day he'll step into the woods with me.

Photo by Michael Kolster

7.24.2017

love and gratitude

Every once in a while life gives me a little bit of sugar.

After a trying Saturday during which Calvin was as stubborn as ever making it nearly impossible to grocery shop or do much of anything, the woman in line behind me at the grocer offered to fetch two limes I'd forgotten to get, and the main reason I'd gone shopping in the first place. Calvin had been so difficult—attempting to drop to the floor, turning on a dime nearly taking me down, planting his feet refusing to make any forward progress—that by the time she returned with the limes I was weeping from a mix of self-pity and gratitude. I thanked her and she smiled sweetly, seemingly pretending not to notice, perhaps to avoid making my despair any worse.

Later that afternoon, Michael and I dealt with what we thought might be a sick boy headed for a major seizure; the kid exhibited nearly every harbinger in the book: rashy butt, seizure breath, bouts of shrieking, dropping down, spells of spaciness and pale lips. An hour before his bedtime he lead us upstairs and patted on his bed, so we tucked him in early. Just then, Nellie began barking wildly at someone on the deck.

We were the target of a home invasion, and not the first of its kind by these particular culprits. Some dear friends, when they learned we could not join them for dinner, brought the entire meal to us. With Calvin seemingly asleep, we quickly retired to the screen porch where we sipped drinks, ate aged cheddar, and dipped blue corn and pita chips into a smooth red pepper coulis. It had been months since the six of us had gathered around a table together, and so we toasted to our friends' presence, thanked them for their generosity, then raised our glasses in honor of a couple of dear friends who, regrettably, had moved out of town the week before.

Living at the eastern edge of the time zone, we were bathed in twilight for quite a while. We sat surrounded by thirsty rhododendrons and azaleas, and day lilies flashing scarlet and yellow petals. One guest noticed that the string of hot weather and the long spate without rain had crisped most of the lawn into straw. We all hoped the heavy sky rolling in meant rain. And what with all the news about wars and despots and oligarchs and liars, it seemed the world needed a good cleansing, but the rain never came.

Michael helped our dinner hosts bring out a platter of pork tenderloin medallions with jars of chutney, plus bowls of herbed rice salad, rustic tomato salsa and a salad with apple and homemade candied pecans. The evening began with a personal anecdote about a fart (not mine), that inspired two amusing stories about dog shit, which then led to more lewd comments and hilarity. Several weeks, if not months, had passed since I last laughed until I cried, so it felt satisfying to wipe wet lashes wearing a smile. We went on to discuss books and politics and films and the wedgies Wonder Woman sports (on her feet) in the latest movie. We mused on San Francisco and the Bay Area since all six of us lived there in our former lives. And we asked after each other's boys realizing, as if for the first time, that we are all parents of only-child sons.

As dusk turned to night, Michael lit candles and oil lanterns, and not long after came our dinner host's to-die-for lemon curd cheesecake, which was served on special plates, each painted with a different bird, that she had brought for the occasion. Relaxing there surrounded by my furiously funny friends and my beloved husband, I realized there is nothing that quite compares to communing over shared food and drink with wicked smart, zany, open, thoughtful, irreverent friends amid candle glow on a warm summer evening.

When I finally crawled into bed, my mind was buzzing with thoughts of the laughter and happiness that had dissolved the bitter difficulties of my day. But it didn't take long for the angst over my sleeping, epileptic child to creep back in. So, I helped myself to sleep by repeating, in my mind, the words love and gratitude to the tempo of my resting breath.

And Calvin made it through the night.

7.22.2017

conundrum

Two weeks have passed since we discovered Calvin's toxic blood level of vitamin B6 and eliminated it from his regimen. I felt its removal was warranted, though I wonder if perhaps its abrupt withdrawal has messed with Calvin's benzodiazepine and/or cannabis levels seeing that they all use the liver's cytochrome P450 to metabolize.

In the removal's wake, Calvin has been more lethargic than usual. Perhaps, as his white blood cell count indicated, he was/is suffering from some sort of virus. He has improved slightly with each passing day, and I haven't seen a seizure in a week, but his stubbornness, as manifested in his refusal to walk where we want him to, and his tendency to want to drop down in those moments—often in the middle of a crosswalk—has made taking care of him exasperating; there are few places we can take him where he is willing to walk more than a couple of yards, though he is fully capable of doing so (we know this because he likely walks virtual miles while at school).

We stay at home more than usual, it seems, and even getting Calvin to stroll in the garden with me lately—a daily routine—has proved challenging. I feel our already small world closing in on us, and the places we can take him are limited to the grocery store, the health food store, the donut shop, the coffee shop and Woody's house three doors down. Often, he won't walk for more than a few steps before attempting to drop down, and I have to yank him along like a mule since he is getting too big to carry for any distance, in addition to my refusal to enable this behavior or play into his pranks.

Complicating an appropriate response to his behavior is that I never really know if his stubbornness is like that of a toddler exhibiting his will, or if it is because his bones or muscles in his hips or thighs or knees or shins or ankles or feet hurt or are numb, or if he is feeling dizzy or headachy or sickly, or is experiencing the effects of benzodiazepine withdrawal, or if a seizure is coming. And so I find myself swinging from patience to intense aggravation, and I feel the scowl carving lines into my brow.

In passing, friends ask us the customary question about our plans for summer.

"We can't really go anywhere with Calvin," I say, mostly not bothering to explain how we'd have no safe place for Calvin to sleep and great difficulty doing any activity with a non-compliant, non-verbal, incontinent, agitated, thirteen-year-old boy save strapping him into a thirty-five pound adaptive stroller which has major limitations and aggravations of its own.

And so, we find ourselves in a decade-long conundrum: spending most of our time at home moving about the house from bed to jumper to bathroom shutters and back again. I try, though not hard enough, to get us both out of our safe yet monotonous and psychologically ruinous comfort zone, which is the only way we'll both continue to grow.