never look away

Seeing the young woman forcibly whisked away by strangers, her family standing there motionless, paralyzed by fear, gave me chills. Though they were simply actors in a movie, it stirred something in me.

The film, Never Look Away, begins with the systematic kidnapping, sterilization and extermination of Nazi Germany's "undesirables"—the infirm, the mentally ill, the disabled—children and adults like my son Calvin whose life, as my friend Chris Gabbard describes in an article and in his recent memoir, is valuable beyond reason. In Hitler's regime, children like Calvin were guinea pigs, tortured in medical experiments and murdered in a state-sponsored effort to "cleanse" society of what Nazis deemed as stains on the Aryan race. Then the Nazis went after the Jews, likening them to thieves, rats and demons, instilling fear and hate in order to further their cause, which was to eradicate them.

These images are sickeningly reminiscent of what I see happening today. Refugees from war-torn, poverty-stricken, violent and corrupt nations are being portrayed by this administration as murders, rapists, snakes, infestations. Like animals, they are being crammed by the hundreds into spartan cages where their health and well-being are in jeopardy—little water, little food, no privacy, no basic hygiene. Their children are being forcibly separated from them. These refugees—our fellow human beings—are no different than most of us, except that they are desperate; they are good people, love their children, want a better life. We are not better than they. We can't lay claim to this chunk of earth stolen from its natives. We can't exploit their labor while neglecting their fundamental human needs.

Though I'm no Christian, I find myself asking, what would Jesus do?

Some people ask why we should be caring for refugees when we should be caring for "our own." Why does it have to be a choice? Can't we do both? I don't know how to solve this humanitarian crisis, though I have some ideas. But one thing for sure is that the current treatment of innocents is barbaric.

The other day someone characterized me as "pro-abortion." I corrected her by explaining I am pro-choice, then underscored the difference. I went on to point out, at least in my mind, the hypocrisies of many so-called pro-lifers—people who support capital punishment (state-sanctioned murder), and yet oppose food stamps, universal healthcare, same-sex adoption, basic care for refugees, a living wage and other measures that help vulnerable populations live and thrive and that contribute to a healthy society.

I think back on the film and on the Nazi regime it depicted, one in which its fascist leaders deemed some lives (Caucasian, Reich Church Protestants, healthy, cisgender) more deserving than others (Jewish, Romani, non-Europeans, the infirm, the disabled, Leftists, homosexuals, POWs, Catholics and followers of other religions.) I think about a world in which people, thanks to ignorance and propaganda, fear and hate others. I think about nations like ours whose so-called leader ridicules people like my disabled son, denigrates women, and maligns decent people who are Black and Brown and Gay and Bi and Trans and Jew and atheist and foreigner.

I think again about the atrocious conditions these refugees face in what epitomize modern-day concentration camps. I think about how so many Americans choose to avert their eyes. I consider the Canadian cartoonist who was fired for his depiction of a golfing POTUS playing through drowned refugees, Oscar Martinez Ramirez and his two-year-old daughter, Valeria. I am reminded that I must remain vigilant in protesting such inhumanity. I am reminded that silence equals complicity. I am reminded, when it comes to atrocities, we must never look away.

Photo AFP-JIJI

spent flower

deadheading rhododendrons again before twilight, a tumbler of wine in one hand.

the scent of smoking hickory chips and salmon discovers me in the back garden. my husband tends to the embers, bakes the cubed, oiled and spiced potatoes, and steams asparagus spears for our eager mouths.

i hear a faint sound like a seal barking in a harbor. is it the blonde redhead playing on the stereo? is it our son?

michael calls to me with subdued urgency, "here it is, here it is." i know what it is: a fit. a tonic-clonic. a grand mal.

across the yard i dash, sloshing wine from a glass held steady as i can. i've done this before a number of times, perhaps every summer; every night of this life, listening for fits.

as i near my son's room i hear him seizing. i reach him, his body rhythmically clenching. i drip lavender oil on his pillow and toes. the seizure begins to slow.

his cheeks are pale and blotchy like fading petals. his limbs are limp like wilting stems. his childish vibrance has withered like shriveled blossoms.

everything about him is like a spent flower.

Calvin coming out of a seizure, 2013

tempests

Like the tempestuous sky, with its swathes and pockets of cinder white and its rolling thunderheads, my son's good and bad behaviors waxed and waned. I've often wondered if the atmospheric pressure affects his fragile brain and ventricles, bringing on epilepsy's electric storms; I'd seen one coming for days—his shrieking and spaciness, and the violent swings in-between.

As Michael and I relaxed in our screen porch after having dined there, and while listening intently to an unusually raucous choir of birds, I heard our son's own shrill cry. I raced across the yard and bounded upstairs to find the sickeningly familiar sight of him seizing. His fits are unearthly, muscles twitching at lightening-quick speeds, eyes wide open though unable to see, mouth agape in a dreadful, torturous expression.

When it was over, and like too many times before, Michael tipped Calvin's chin up to wipe drool from his cheek, and a ribbon of scarlet blood streamed out. My poor sweet boy whimpered, as I imagined the world in his mind was spinning. I got in bed with him and held him, twilight still lingering at nine o'clock. As I laid there feeling his breathing, which sometimes wavered, I thought about our friend-brother-son who took his life last August; he comes to mind often—his pillow case, his tea pot, his voice, his being. I wondered if the physical world itself—nature—as much as the personal, political and social ones, sometimes crushed him, its sharp-contrast, sunlit days blindingly harsh, its tempests and leaden skies pressing down.

I laid there next to my own son wondering when nature might take him. In a cloud? In the wind? In a storm?

our excellent adventure

Stepping to the crest of a small dune we finally spied the Atlantic spreading out before us in a bed of waves. Despite a ten-minute visit, it quenched my thirst for the sight, sound and smell of open ocean and the ability to see for miles. We hobbled to the shore with our belligerent child, wrestling with him every step of the way. When we reached the surf, it lapped his feet and shins. He leaned forward to touch it. Surrendering, I gently let him drop, the salty water washing over his legs. Clearly thrilled, he squealed and splashed and flailed, then took up a fist of sand and got it partway to his mouth before I interfered. His diaper filled with seawater until it nearly burst open. Once there, mingling with the ocean—the water his second home like it is for me—he didn't want to leave, so our trek back to the car was nearly as tough as the one out to the sea.

Our trip last week to Florida was a successful one on so many levels. It was the first time we'd taken Calvin on a plane since 2011. It was the first time we'd taken a vacation packing his cannabis oils; thankfully, TSA had changed their rules on medical marijuana about a week or two before our departure. Our flights were on time. Not unlike Houdini, I managed to change Calvin's wet diapers in the tiny airplane bathrooms.

During our excursion, Calvin remained seizure free. Two loving caregivers, Jessica and Cassandria, stayed with Calvin and put him to bed so that Michael and I could attend two dinners "out." The women's attentiveness, professionalism and affection left me wishing they'd move to Maine.

We made it to the beach and lounged beside the pool in the shade of palm trees. We were graced with gorgeous, sunny weather with barely a hint of humidity.

For the first time, I was able to meet my friend, writer and professor of English at the University of North Florida, Chris Gabbard, face to face. He gave me a copy of his celebrated new memoir, A Life Beyond Reason, written about his beloved son August, who I believe was much like Calvin.

On one night, I had the absolute pleasure of partying with a table full of interesting, energetic, curious, compassionate and humorous septua-, octo- and nonagenarians at my mother-in-law's eightieth birthday dinner. Calvin got to see his grandparents, grandaunt and all of his aunts, uncles and cousins on Michael's side. I was happy to have conversations, albeit short ones, with all of my in-laws, especially my niece and nephews, whom I love and am so proud of and miss when we are away. And Madison, our niece, doted on Calvin and played with him in the pool.

Calvin with his buddy, Madison

grace and disfavor

Our flights to Florida last Thursday on our way to celebrate Michael's mom's eightieth birthday were both rewarding and distressful. When boarding the first plane, we were greeted by a gorgeous flight attendant named Ada (short for Alexis Dominique) who was immediately and palpably drawn to Calvin, even letting him give her a hug before we were seated. Midway through the flight, after I had somehow managed to change Calvin's diaper in the minuscule bathroom, I read a note Ada had written to us on a paper napkin:

Keep up the great work. I am amazed at the level of strength and humility you brought on this plane when you boarded. Often times you may feel you are overlooked and undervalued. Just know that my prayer for you is one of strength and unmerited favor. While your son may not have been able to express himself to me, he said a million words with his smile and hug! I pray he continues to change lives as he did mine. LUV ADA

Her words of love made me weepy. Regrettably, however, the glow of Ada's smile and message of hope and positivity wore off momentarily during the second leg of our trip.

After deplaning, we made our way to the Southwest Airlines gate in Baltimore where we parked ourselves nearest to the gate. Calvin, who was seated in an airport wheelchair, was up to his usual antsy antics. While feeding him and waiting to board, I spied two airline personnel. One of them, a middle-aged White guy wearing his sunglasses for much of the time (indoors, mind you), was describing to the other man who I thought might be a pilot, his long-term service in the Marine Reserves. He seemed keyed-up and cocky, a bit as if he had sniffed some coke. His greenish eyes were accentuated by a buzz cut with a bristly ridge not unlike a dog's raised hackles. Each time I smiled at him, he looked right through me, then abruptly averted his gaze. I figured he must have been an airport bellhop or a technician. At one point, he turned his back on us, lowering his voice to nearly a whisper so as not to be overheard. I wondered what disparaging things he might have been saying, perhaps about certain passengers, foreigners—who knows? In any case, I got a seriously bad vibe from him. The next time he looked at me, I narrowed my eyes, wagering he was trouble.

To my utter surprise, he turned out to be one of the flight attendants. He greeted the passengers by joking that the 737 jet had just one engine, but that the plane was "perfectly fine" and "good enough" to fly. I thought his comments were reckless, especially considering the somewhat recent crashes of two Boeing 737 Max planes. When he took the mic, he delivered his safety precaution shtick, listing behaviors allegedly not allowed on the plane, such as crying, slapping, whining, complaining and microagressions. Though I knew he was trying to be funny, I winced thinking of Calvin, who was already busy committing most of the so-called forbidden offenses.

The flight attendant persisted:

"And if any of you experience microagressions, you can go sit out on the wing. It's a safe space for Snowflakes."

Some readers may not be aware of what microagressions are. Well, now is a good time to learn. Study up. Microaggressions are brief and commonplace verbal or behavioral indignities, whether intentional or not, which communicate hostile, derogatory, or negative bigoted slights and insults toward any marginalized group, such as—though not limited to—a racial or ethnic minority. 

I wondered if his comments were primarily meant for the many Black passengers on the plane, people who likely are the principal targets of microaggressions.

From the aisle seat, and without pause, I asserted myself loudly enough for several rows of passengers to hear me.

"That is not okay. That is not funny."

"We're all good, Ma'am," he replied, with a faint southern drawl seeping out from a sheepish jester's smile.

"No. YOU'RE all good," I said, pointing my finger at him, wanting badly to cite his Able-White-Male privilege.

He continued his attempt to assuage me, repeating the "it's all good" thing.

"I'm offended!" I added disdainfully, and then I let it rest.

A Black woman seated across the aisle one row up turned her head slightly in my direction and grinned; the flight attendant shrunk into the beverage-prep area. I wanted to stand up and apologize for his ignorant, bigoted behavior—his statement about microagressions epitomizing a microagression itself. Black people and other People of Color, among others, hear and experience this kind of tacitly racist bullshit all day every day, and yet most seem to have spectacular grace in deflecting it and moving on, despite being utterly vindicated if they chose to confront it head on.

So, too, went the rest of our three-day adventure with our quirky, spastic, loud, sometimes manic, non-verbal, incontinent, drooly, seizure-prone, overlooked or gawked-at teenage son—people, most of them strangers like Ada, sharing deep and moving gestures of love, kindness, compassion, grace and generosity, while others, albeit far fewer, displaying with flying colors their ignorance, disfavor and contempt.

Calvin hugging Ada (Alexis Dominique)

innocent abuses

It has probably not been more evident than this weekend that our fifteen-year-old son, Calvin, is still suffering the side effects of the benzodiazepines he began taking at the age of three, and that he has been off of for over a year. What is clear is that Calvin cannot sit still for more than a few seconds or minutes at a time, except when sleeping. What is unclear is whether it is a case of akasthisia, psychomotor agitation, mania or some other condition or combination of conditions and whether it might also be due, in part, to his Keppra. In any case, all day long Calvin paces, pats, bites, writhes and flails.

This weekend, while on flights to and from Florida to celebrate Michael's mom's eightieth surprise birthday (more on that later), we were held captive to Calvin's innocent abuses. In short, he destroyed us—batting us in the face with his flailing arms and fists, tearing at my brittle hair with his sometimes clammy hands, shrieking at times for unknown reasons, grabbing around our necks every few seconds for hours while we were confined to sitting on either side of him. It is hard to be on the receiving end of this kind of relentless manic behavior from a kid approaching my height, but I cannot imagine the suffering he must endure from this violent restlessness that has plagued him for years.

Last week, our local NPR station aired a call-in show on benzodiazepines. Its producer, an acquaintance of mine, suggested I contribute; I was grateful to be its first caller and to share our experience. If you are taking benzos—even if just periodically—or thinking of taking them, I recommend you listen to the show.

This weekend, I was reminded of how deleterious benzodiazepines like Klonopin, Clobazam, Valium, Ativan and Xanax can be on the developing mind, the adult mind, the aging mind. Benzos like Xanax can become addictive after only a few doses. What's worse is that they often have paradoxical side effects and worsening of the very symptoms the medications are meant to treat, particularly when their efficacy wears off, as they tend to do. 

When taken for anxiety, insomnia and seizures, those conditions can quickly worsen when benzo dependency kicks in, causing many patients to increase their dose in order to recapture the desired effects. This can become a viscious cycle. Regrettably, by the time folks witness and understand the dichotomy and unsustainable nature of benzos, they may find themselves at high doses of the drugs that are nearly impossible to discontinue*.

From Wikipedia:

Long-term worsening of psychiatric symptoms (of benzodiazepine use)

While benzodiazepines may have short-term benefits for anxiety, sleep and agitation in some patients, long-term (i.e., greater than 2–4 weeks) use can result in a worsening of the very symptoms the medications are meant to treat. Potential explanations include exacerbating cognitive problems that are already common in anxiety disorders, causing or worsening depression and suicidality, disrupting sleep architecture by inhibiting deep-stage sleep, withdrawal symptoms or rebound symptoms in-between doses mimicking or exacerbating underlying anxiety or sleep disorders.

I should note that some folks, who don't seem to experience these side effects, swear by benzos.

Sadly, what I think has happened to Calvin is that his developing brain was forever altered by benzodiazepines. He was not a hyperactive child before taking them. I fear he'll never be calm again, forever restless and forever subjecting us to his innocent abuses.

*For help discontinuing benzodiazepines, please refer to The Ashton Manual.

blonde redhead

Music will save the world. Last night it saved me from monotony and despair. Despite needing to catch up on lost sleep due to Calvin's recent and prolonged waves of seizures, for the first time in what felt like forever, Michael and I stepped out to see a concert in the "big" city of Portland, where most of Maine's hipsters live. Regrettably, the event was sparsely attended, which bummed me out a bit, knowing that the band might be discouraged, too. But Michael reminded me that as artists, these musicians don't care. They just want to play. He was right. They gave their all and everything.

We've been listening to Blonde Redhead for nearly twenty years. Michael first heard them on Bowdoin College's radio station. While driving, he was so blown away by their powerful and distinct sound that he pulled to the curb, found a phone booth and called the station to ask who the DJ was playing.

Inside the small venue, Port City Music Hall, Michael and I positioned ourselves front and center, within arm's reach of the New York-based trio. Italian twins, Simone and Amedeo Pace, jammed guitar, drums and sang, while vocalist, Kazu Makino, who also played guitar and keyboard, employed her voice quite ethereally and at other times wild and loud.

Bathed in orange and purple light, I danced with abandon to the jazziest of their gorgeously ecclectic rock songs, and beside me Michael did, too. I missed Calvin, wishing he could be there with us while knowing it was something he would probably never do. Regardless, as the bass drum beat in our chests, we felt this musical elixir fix us, at least for one night, before going back to the grind.

if-onlies and might-have-beens

Foul is the smell coming from my son's mouth, as if there's something rotting inside him. It stinks like a festering wound. I think some of it might be blood from having bitten his tongue during the seizures he suffered the other night and this morning. Of late, the grand mals are coming in clusters—nine in the past month.

These seizures, drugs and side effects have been ruinous for all of us in some form or another, and there's really no end in sight. Calvin can't stay still for even a few minutes. It's called akathisia, the movement disorder characterized by an inner feeling of restlessness due to the use of antipsychotic drugs. I know for certain it's a side effect of the benzodiazepines Calvin was on from the age of three until fourteen. Keppra is also a culprit. I fear they've changed my boy's brain forever. Ruined. Devastated. Wrecked. I despair thinking of all of the if-onlies and might-have-beens.

Forlorn, my antsy boy held briefly in my lap, I remember Michael's notion that music will save the world, so I get up and turn on FIP (France Inter Paris) radio network. I've been tuning in a lot lately, and it's eclectic music and ticklish French accents have been a saving grace. The second song, River Man by Nick Drake, is gorgeously sorrowful and familiar. A few of its lyrics always bring me to tears.

Betty said she prayed today
For the sky to blow away
Or maybe stay
She wasn't sure.

I'm not a praying gal, but sometimes, like when Calvin can't settle, is manic or is in the thralls of epilepsy's fits and I feel myself sinking, like Betty, I find myself wishing for the sky to blow away. Other times, like when Calvin can remain in my arms for extended periods, looks straight into my eyes, or when I see him smile and give Michael hugs and kisses, I'd grip fists of that sky forever.

on sovereignty

the breakthrough from gray skies to blue doesn't always bring me pleasure. sometimes the shadows cast by an unfettered sun are far too hard-edged for me. i must squint and scowl, avert my gaze. glowing colors which are saturated on dewy mornings appear washed-out and tired at midday, as if an antique snapshot made them that way.

on days like this the events of the world, the nation, feel crushing: weak and deceitful leaders, starving, neglected children, abused and oppressed women, desperate, fearful migrants, mass shootings, suicides, overdoses, executions. i overheard the grocer's cashier say, "she had on a dress she had no business wearing." her words stung as if they were meant for me. i wanted to say something like, people can wear whatever the fuck they want, or, as my dad used to say jokingly, what's it to ya, cabbagehead?

weariness and worry weave themselves into my body and brain. i know it's the consequence of stress and sleep deprivation. almost nightly, i catch myself clenching my jaw or grinding my teeth. perhaps it's loneliness i feel in my bones, strolling around in the garden somewhat aimlessly. what am i searching for? i bend, crouch and stretch, snapping errant twigs, clipping others, forcing growth into otherwise gangly, rambling, branches. i thirst for this control of nature; i have none when it comes to my boy and the seizures he suffers so endlessly. i wish so much for freedom from this malady.

recent talk of a merciful god bugs me. i recall a friend thanking god for protecting her non-verbal, disabled child from nearly choking on a chunk of celery that had been lodged in the back of her mouth for hours. why hadn't god simply protected the girl from gagging on the celery in the first place? why hadn't god saved the child from suffering scores of seizures that rack her brain? no doubt countless pleas have been made to god—concerning war, famine, disease, blight, disaster, injustice. they go unanswered regularly. though the existence of a certain kind of sovereign universal force (Nature?) seems reasonable, it's the belief in a merciful god—and one who condemns and punishes—in this messed-up world that is so astonishing to me.

in gazing through the shrubs and trees, I consider calvin, my little guinea pig, who is surviving on one pharmaceutical drug and two cannabis oils for his epilepsy. one oil i make, the other i send for in the mail. every good month is flanked by awful ones. his seizures are reliable and often come in clusters, of late, at the very least weekly. i hear of others afflicted with this disease, some too poor to afford their therapies.

folks go on about their freedoms while being hamstrung by healthcare premiums, copays, costs and deductibles so excessive they risk bankruptcy. some must choose between food and insulin. greedy corporate bastards and their political pawns feed on people's fear and ignorance, twisting the notion of what it means to be free, keeping people sick and shackled, widening the divide between those who have (money, power, control) and those who don't and never will. no one should profit off of ailing bodies. that's not freedom. that's tyranny.

near the end of my musings, i glance outside again and then at a spoon that hours before had peanut butter on it. it sits on a mysteriously-gotten susan sontag book, patiently awaiting to be picked up. it could sit there forever, until it becomes part of the room's wallpaper—an antique snapshot. i sit here wondering, though not concerned, what life is all about, my motions and emotions so crisscrossed in my body's sovereign continent. yes, sovereign.

a birdsong sailing through the screen door breaks my melancholy. i hear the bus pull up with calvin. bathed in late-afternoon dappled shadows, the garden has softened. the breeze is cool and exhilarating. the sun on my back feels good.

bigger picture

My husband said, "You have to forget yourself." He was describing what it takes to care for our son. It's a monotonous, tedious, sometimes frustrating job which requires laser focus on Calvin's every move lest he get hurt or make a mess out of things, namely his own shit, of which I have much first-hand experience.

In yesterday's post, helicopter mama, I describe some of the minutiae of Calvin's care, my bad habit of hovering over him and his caregivers and, in doing so, my tendency to step on toes. The post drew a number of comments, the first from my friend, Les, whom I've known for twenty-three years. He wrote:

You are the only woman I know that is strong enough and has the right personality to do what you do.

One of Calvin's former therapists commented:

poignant and insightful for those who hope to say the right thing ... but don't.

A friend and mother of a child like Calvin sent me one of two heart GIFs, and another simply said:

Yup.

One reader with whom my post struck a nerve, wondered for whose benefit I write the blog. I explained that I write it for myself and those in similar situations, with the added hope of engendering introspection, including in myself, and to offer insights into messy situations which are nearly impossible for most people to imagine or grasp otherwise. I said I hope the blog prompts readers to put themselves in other's shoes, to recognize their own good fortunes and perhaps inspire empathy, humility and gratitude. I should have added that I aim to reach people who find themselves in any kind of stressful, challenging circumstance, hoping they find solace in my words and perhaps feel less alone.

Another reader, a poet whom I've never met, sent me a personal email in which she said:

I hope most caregivers have grace and understand and allow room for what you need to do to be with your son. Caregivers have a difficult job too—but it is not the same thing as being you in your relationship to Calvin. True healers one hopes for—and the healing is in support of you too. It has to be. You and Calvin are not in isolation from each other, and I (can only) imagine this requires dedicated teamwork. 

She went on to say:

I have been reading your posts for a number of years now—I don’t know how many years. Your honesty about yourself and others—not sham “honesty” to excuse cruelty, but true and difficult honesty—is your integrity. You don’t make this shit up. You hold yourself accountable. I hope most of your nurses and other supporters understand and can be there with you.

Her words brought me to tears; I sincerely hope I live up to them.

While I digested the various comments yesterday, one in particular, I realized that my post was missing something. I needed to helicopter out to see the bigger picture rather than hovering at microscopically close range. I'm not saying caregivers shouldn't forget themselves and focus closely on the job at hand: my boy's safety and well-being. I'm saying that from a more generous vantage point I'm able to see that, for all of my complaining and frustration, most of our many caregivers over the years—nurses, ed techs, teachers, therapists—have been lifesavers of sorts. If it weren't for their assistance, their affording me much needed respite, who knows how I'd be dealing? And I'm not saying I couldn't take care of Calvin without them. I know I could. I did for the first two years of his life and for months at a time since then. But I've little doubt I'd be in far worse shape without having had them, (not that I'm in that good of shape now.) Caregivers have allowed me to walk the dog, romp in the garden, write my blog, research epilepsy treatments, do house chores and shopping, catch a rare movie and sometimes a much-needed nap, and grab a drink and a bite with my husband. But perhaps the most important thing of all that has nothing to do with me is that they have always doted on my son.

As I finish this post—one not unlike most others in which I begin writing without fully knowing where it will end up—I see that it has done what I hope my posts do. It has prompted (my) introspection. It has humbled me some, revealing my thin skin and pettiness. And it has helped me to be grateful for my own good fortunes.

Calvin and nurse Rita