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 had little doubt 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

helicopter mama

I'm a helicopter mama, hovering over the natural disaster that is my non-verbal, incontinent, legally blind, autistic, cognitively and physically disabled, chronically ill son. Regular electric storms wreak havoc inside his skull causing him to writhe, twitch and convulse. Including this morning's, he's had nine grand mals this month. A recent electroencephalogram revealed brief, fifth-of-a-second epileptic discharges (not considered bona fide seizures) occurring—at their most frequent, during sleep—once or twice every ten seconds or so.

I'm a helicopter mama for which I sincerely apologize to no one. I know my son far better than anyone. He's on my radar all day and all night long—no further than arm's reach, mind's eye or earshot. I know when he is too warm, too cold, when he's having, just had, or needs a poop, even if he's not in the room. I know when he's apt to wet through, when he's hurting, feverish or seizing, mostly when others don't. On days when he's most vulnerable—in the wake of or lead-up to seizures—I know when a bath is likely too long or cool, or a walk in the sun with wind is too cold. Exposure to the elements can sometimes be stressful for kids like him. Because Calvin can't speak, I've had to become adept at walking in his shoes. I know when he's headed for a seizure hours before it occurs, can sense its omen's and feel in my gut the weight of possible triggers. And yet I find myself biting my lip, reluctant, though failing, to hover too much over others caring for him. Though I don't want to be, I'm good at stepping on toes.

Some say, you have to trust us. I respond, trust is something to be earned. Others say, I love your boy, then go on to verily neglect my son.

As other helicopter mamas of kids like mine will confirm, some folks—whether with empathy, ignorance, conceit, contempt or concern—make attempts to save us. We are told to relax, told not to worry, asked if we are tired (hahahaha!) and told to get some rest. We are told not to get upset in front of our kids lest our outward stress set off a fit. This unsought advice, though likely sincere but perhaps—even if subconsciously—self-serving, brings to mind a favorite quote from a song by Gang of Four:

Save me from the people who would save me from myself.

The rest of the lyric, which is deliciously irreverent and hilarious, but which I rarely quote because it it is also rude, goes:

They've got muscles for brains.*

Something helicopter mamas also hear often is, Everything will be fine.

One dear friend genuinely put it this way:

Calvin is not going to die (anytime soon) ... or maybe he will.

She did not sugarcoat. She did not dismiss. She spoke what I know to be the truth, which in a strange way gave me a sense of calm, knowing in that not-too-unlikely, worst-case scenario I'd have done everything humanly possible to keep Calvin safe. As a helicopter mama, I'd have done my very best.

*Yesterday I took this line out for fear it offended, but then I added it back in for full transparency and accountability, noting what I hadn't originally, which is that it is rude.

Photo by Michael Kolster