7.17.2019

i can't breathe

Summer 2014

The evening was blazing hot. I was in the middle of mixing myself a bourbon with ginger beer on ice while Michael busied himself cooking our dinner. Calvin was screeching and spinning in his johnny-jump-up. He’d had an off day, whining a lot at who knows what. When I turned to check on him I saw that he was jackknifed in his jumper, his contorted limbs rhythmically pulsing.

“Oh no!” I cried, as Michael and I ran to his side and began prying his stiff body from the jumper, the crotch of which was wedged tightly between his rigid legs.

I had a hard time telling if or when the seizure was over, except for that he had begun breathing again. I gave him several drops of cannabis oil since, even though the color in his face had returned, he continued to twitch and flinch like a tortured bug. After a few minutes the spasms had subsided and he fell asleep on the couch.

That same summer, a Black man named Eric Garner and a Black man named Michael Brown also stopped breathing.


The seizures continue to batter my son every three to nine days, or so, though now they occur almost exclusively in the middle of the night.

Epilepsy is relentless. The seizures and the pharmaceutical drugs used to treat them rob our children of meeting their full potential, of living life to its fullest and often make them feel horrible. It pains me to see Calvin suffer, particularly when there seems to be nothing I can do. Try as I may, the seizures continue their steady assault on our fifteen-year-old son's brain and body. Our only hope in stopping the battery, it seems, is to continue giving Calvin an herb—cannabis—which is illegal at the federal level. In doing so we are essentially breaking the law. Luckily, I am insulated by a state law which sanctions the use of medical marijuana ... plus the fact that I am white.

Perhaps experiencing the injustice—the plague—of epilepsy is partly why I empathize so deeply with the family members of the unarmed black children and adults being gunned down at an alarming rate by white police officers and bigots like George Zimmerman. Lately, when I watch Calvin in the grip of a seizure, watch him convulse, watch his skin and lips blanch, his eyes sometimes rolling back or vacant and at others full of fear, I can't help but think about the scores of mostly black victims that continue to be sprayed with bullets, cuffed, punched, tasered, gassed, pepper-sprayed and choked to death by white cops. How did these fellow humans feel during their assaults? How do their loved ones feel when they see the distressing videos and hear their beloved's last words:

it's not real. i don't have a gun! stop shooting! officers, why do you have your guns out? please don't let me die! what are you following me for? mom, i'm going to college. why did you shoot me? i love you too. i can't breath!

Some of you might wonder why I continue to write about racism in a blog largely dedicated to motherhood, epilepsy and disability. Some of you might be fatigued by the rash of stories in the news and peeved by the talk of racism, by the inconvenience and violence of protests, by the lingering frustration and fury over the grand jury failures to indict the White police officers in the Michael Brown and Eric Garner killings, uncomfortable because of the Facebook posts condemning racism, police brutality, riot gear, racial profiling and the videos showing police assaults. Maybe you're sick of it all. Maybe you wonder why I continue to fuss about it. I'd say those are White-privilege problems, and I'll tell you why: Because as someone who feels deep despair, anger and hopelessness seeing my child pummeled by relentless seizures, seeing him stop breathing for minutes at a time, seeing his progress choked by vicious drugs and to be always fearful of the next attack thinking it might be his last, I shudder to imagine what it must feel like to be a Person of Color today and to suffer under a system built to oppress them, to mother a child who will no doubt at some point in his lifetime be wrongly profiled, targeted, pulled over, frisked, suspected, feared, questioned, blamed, arrested, charged, beaten, incarcerated or murdered by White law enforcement officers in a White criminal justice system, to live in a country where most White people deny that racism exists or is at the root of these kinds of wrongdoings. I write about it because it is wrong and pervasive and I love and understand my Black and Brown friends, and it is a problem that is not simply going to disappear until White people start to acknowledge there is a problem, until, perhaps, White people start to feel uncomfortable, which is little to ask considering what Black people have had to endure in this nation for four-hundred years.

The night after the Grand Jury declined to indict the White police officer who put Eric Garner in a choke hold that lead to his death, in the wake of Calvin's seizures, I laid awake lamenting the outcome and the plight of so many others and I thought about my fortune: My boy is alive. I live a life of privilege in a nice home in a safe community with a husband who has a good, steady job. We've got plenty of food, a comfortable, reliable car, good health care and money to spend—and I am White, which is not to say I am proud to be White. It's to say I can go to our local cannabis dispensary and procure two ounces of the best bud which nearly fills a large mason jar. I can transport it home in its white paper bag never giving it a second thought if I get pulled over for a traffic violation. At home, I can make it into an oil which I give to my son to lessen his seizures. I can tell friends about it. I can blog about it. I can feel relatively sure that I won't be arrested for possession and put in jail or have my son taken from me by Child Protective Services.

In a different world, one in which I were Black and male, would I make it past security even with my medical marijuana cards on me? Would someone call the cops because I looked suspicious since I was wearing a hoodie and I had my hands in my pockets? Would they believe I was buying the cannabis for my son's epilepsy? On the way home, would I be pulled over for, as some say, driving while Black? Would I be harassed? Would I, in my legitimate expression of anger and frustration over being questioned and doubted by the cops, be seen as belligerent, be cited, be assaulted, be put in a chokehold, be arrested, be thrown in jail? Would they shoot me while I reached into my purse to get my son's medical marijuana card? Would my last words be, "I can't breathe"?


7.16.2019

questions (some rhetorical, others not)

will these early-morning seizures ever stop? will calvin eventually succumb to them? am i slowly going crazy? is my son already insane? when will so much of white america finally confront their ugly racism and bigotry? do i have traumatic stress disorder? has being a helicopter mama ruined me? will my patience ever give way? how can i stand my angry self? will life with calvin ever get better? why did that guy sitting on his porch look away from us when i caught his gaze? will folks ever stop gawking at calvin and me? will my son ever learn how to feed himself? will he ever be potty trained? will he ever be seizure free? when might i get a full night's sleep? am i being selfish? how do i manage living with my son's chronic illness and disability? when will police ever stop mounting violence against black and brown people? will contempt for the poor ever fade? will the occupant of the oval office ever be dead to america? when will women be treated equally? what will happen to the children of refugees? how can so-called leaders seem so unmoved by their caging of humanity? why are some folks so ignorant, cowardly and afraid of change? will calvin live beyond our years? will he die next week? next month? next year? how can i keep caring for him? could i really let someone else be his caregiver? will others prey on him? have they already? why do i feel such love and the next minute such contempt? will i ever get my life back? is this my life? what would life be like without him? will i ever return to rome? paris? madrid? will we ever leave maine? why do some folks believe in a merciful god amid such vast injustice and misery?


Photo by Michael Kolster

7.13.2019

curses

For the past two days I've been channelling my inner Joan Rivers, my best Samuel L. Jackson, my George Carlin, cursing worse, even, than Andrew Dice Clay. With paper-thin patience, I've been struggling to not let my kid drive me crazy with his constant grousing. Needless to say, I'm failing. To make matters worse, Michael has been out of town for three days at his solo photo show at the Telfair Museum in Savannah, thankfully to return any minute, so I've been flying solo since Thursday evening.

I haven't been counting, but I'm certain I've spat—at least once—most of the words on George Carlin's list of things you can't say on TV (think of the worst swear words possible) plus a peppering of other foul curses. I'm exasperated, sleep deprived and irked. Calvin has been intense the past two days, at times devolving into sudden manic tantrums, the source of which, since he can't tell me, I can only guess are either gas pains or a side effect of his Keppra, namely emotional lability.

I'm so fed up with listening to him shriek and whine and grouse all day for two days, and I'm sick of listening to myself at times respond with such ugliness. The scowl on my face feels etched in so deeply I wonder if it will ever fade.

Photo by Michael Kolster

7.12.2019

the ice man cometh

This weekend, the current administration has plans to raid our communities in search of unauthorized immigrants to deport. This will inevitably mean that the families of some of our neighbors will be split and splintered. This means that good people who have integrated into our communities, who contribute to society, many who build our homes, care for our children, cook our food, clean our hotel rooms and homes, harvest our crops, package our meat, and who pay billions in taxes, will be torn from their loved ones and their homes. This means that people, some who have lived in this nation for decades, many who have American wives, husbands and children, and whose children are dear to our own, will be forcibly taken, put into detention and face deportation, their only offense having been to flee hunger and danger, to seek a better life for themselves and for their families, to have claimed asylum.

Keep in mind these ICE (Immigration and Customs Enforcement) agents will likely not be targeting undocumented European or Canadian immigrants. Why? Because this is a racist policy put in place by a racist administration targeting Black and Brown people who fled from nations south of "our" border. This is an example of White Supremacy. Beware, American citizens will also be swept up in these raids because of the color of their skin. Like this administration's proposed census question, its neglect of Puerto Rico, and its Muslim ban, racial profiling will be at work.

Once again, I am reminded of fascist Germany's Nazi raids of homes like mine, in the kidnapping and detaining of disabled, infirm children before going after other "undesirables"—Jews, homosexuals, Catholics, non-White Europeans. It can happen again, even in this nation, lest we forget our government's internment of Japanese Americans during World War II. Like some Jewish American activists are doing, we should be protesting these seizures and detentions of refugees. We should be shouting, "never again!"

And when it happens, these immigrant and blended families will be left in shambles. Their breadwinners and caregivers will be arrested, detained, deported. Their children will be orphaned. Their communities will be shaken. Their families may never be reunited. We should imagine their fear as our own, and condemn this administration's actions.

Keep in mind these immigrants and refugees who, study after study show, make our communities safer, have committed no crime by claiming asylum on land that was stolen from its natives by many of our White ancestors, its prosperity largely built by slaves stolen from their native lands. These immigrants and refugees are not "illegals." Ironically, their ancestors may have lived in what is now Texas, California, Louisiana. These people are human beings. They love and toil and grieve and bleed just like the rest of us. We have room for them. We'd do better, be better, if we welcomed them. Remember the quote at the foot of our Statue of Liberty:

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

Yes, the ICE man cometh. He will wreak havoc, tear wounds in our communities, rip apart families with his sanctimonious contempt for those he sees as threats to his privilege. But know that he is ignorant. Know that he stands on the wrong side of history. Know that his power is withering, his reign limited. Still, beware his acts of desperation. Shelter, if you can, these innocents from the ICE man's chilling grip.

Photographer unknown

7.10.2019

early drink

warm maine evening. semi-compliant child. lauren's sweet invite for an early drink. stroller ride, popping grapes and cashews into calvin's mouth from behind. gray clouds in parts of the sky. nellie by our side. sitting in lauren's screen porch on an heirloom swing with the perfect patina of peeling paint. calvin content for awhile pumping his legs and chewing on a plastic lid. rum and lime and honey on ice, plus a sprig of homegrown mint.

7.06.2019

secularly blessed

These past several weeks I've been feeling pretty fortunate, lighter and livelier simply knowing that my son Calvin has only had six seizures in a month's time. Granted, all of his seizures have been grand mals, but since 2007 they've been self-limiting, each convulsive fit lasting about about ninety seconds rather than the twenty or forty-five minutes of yore. Six is the rare figure equal to the least number of seizures in any given calendar month since September of 2016 when he had just five. That was when he was on a higher dose of Keppra by weight, and was still taking nearly four milligrams of the benzodiazepine, Onfi. In other words, this past month he's done as well as when he was on far more pharmaceutical medicine, albeit not as well as a nearly a decade ago when, on high doses of three anticonvusant drugs, his monthly seizures were in the low single digits. But back then we had what felt worse even than seizures: an impossibly manic, agitated and shrieking child who reduced me to tears nearly every day.

What also feels liberating to me lately is the absence of partial (focal) seizures these past several weeks. My gut tells me that their recent disappearance is due to the reduction in Keppra we did in mid May, though it could be due to the increase in my homemade THCA late that same month.

Noteworthy, too, is Calvin's recent growth and weight gain, which was enough to put him on the charts; for the second time in his life he has hit the first percentile for weight for his age. He's also in the thralls of puberty, sprouting hair in all the usual places and, on these hot, humid days, is just beginning to smell like teen spirit. Despite all of this, his seizures aren't going crazy. Knock on wood.

When I am feeling grateful about a relatively seizure-sparse month, it reminds me to be grateful for our other fortunes. I think about how lucky we are to be breathing clean air and drinking clean water, and for the privilege of living in a comfortable home in a safe part of a nation which is not war-torn. Also, we are secularly blessed this time of year to have air conditioning in Calvin's room, and to have a thriving yard chock full of beautiful flowering shrubs, a milky way dogwood in full bloom, a burgeoning perennial garden, and to be able to eat dinners in the screen porch that Michael built years ago. I feel most grateful for our friends, for our community and for Michael's job, and the fact that we have decent health insurance because, as unjust as it is, not everyone does ... yet. I thank my lucky stars for Calvin's various caregivers who help me out a handful or more hours each week. I think myself fortunate to live close to the college campus and its students, its athletic fields and their trails, and to our modest downtown. I owe a debt of gratitude to Calvin's medical marijuana dispensary where I get his THCA flower, and to the amazing folks at Palmetto Harmony for making Calvin's CBD oil. I'm grateful for wicked-smart people who have the wherewithal to advocate for women's rights, the rights of oppressed and marginalized Americans, and for the rights of refugees hoping for asylum who are currently being held in horrendous detention centers at our border, many of the children separated from their parents just as was done to enslaved Africans and Native Americans, and to Jews and others in Nazi Germany, causing great physical and psychological harm.

So this enormous gratitude and humility comes with more than a modicum of hope that Calvin's seizures continue to retreat and hope that our nation will choose to move forward—to progress—rather than to carry on its more recent backwards spiral into dirty air and water, fear, ignorance, hurt, hate and misfortune.

7.03.2019

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

6.30.2019

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

6.28.2019

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

6.24.2019

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?

6.22.2019

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

6.19.2019

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)

6.17.2019

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.

6.11.2019

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 twinsSimone and Amedeo Pace, jammed guitar, drums and sang, while vocalistKazu 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.

6.10.2019

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.


6.07.2019

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.

6.02.2019

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

5.31.2019

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

5.30.2019

the trouble with keppra

May has been another rough month; Calvin has suffered eight grand mal seizures, three of them within thirty hours, though just two focal (partial) seizures. In April he had just one grand mal, though ten focal seizures. A recent EEG captured one of this month's grand mal seizures, plus a number of focal and generalized "discharges," which were explained to me by Calvin's neurologist as possible precursor to seizures which never emerged. Other suspicious behaviors, however, such as space-outs, finger stimming, flushed cheeks, shivers and jerks, rapid breathing, eye pressing, tummy grumbles, ear rubbing, insomnia with repetitive humming, clammy hands, rapid, pounding heartbeat and other panicky behaviors were reportedly not seizure related.

This news made me wonder if Calvin's suspicious behaviors are drug related, including the uptick in seizures after having increased his one pharmaceutical, Keppra, in early March to account for weight gain. So, in my ceaseless sleuthing to unearth ways to reduce Calvin's seizures and improve his quality of life, I went back to the Internet to study—for the umpteenth time—Keppra's side effects. I read what I had long suspected, that seizures can be a side effect of Keppra. In understanding that most side effects are dose related, and with the knowledge that Calvin has always been on an extremely high dose of Keppra (as high as 86 mgs per kg compared with the mean therapeutic dose of 44 mgs per kg) we decided to decrease his dose by ten percent (from 75 to 66 mgs per kg) to see if the side effects he seems to suffer might abate. It is too early to tell for sure, though his behavior and sleep do appear, generally, to be slightly improved.

Below is a list of Keppra side effects taken from the website drugs.com. I have highlighted the ones I sense Calvin might be suffering. Some of the side effects, such as joint, bone and muscle pain, I can never know with certainty; since Calvin can't speak, I can only presume.

I should note that for some people, like any antiepileptic drug, Keppra works wonders. And, sadly, all antiepileptic drugs have scores of side effects.

In Summary:

Common side effects of Keppra include: infection, neurosis, drowsiness, asthenia, headache, nasopharyngitis, nervousness, abnormal behavior, aggressive behavior, agitation, anxiety, apathy, depersonalization, depression, fatigue, hostility, hyperkinetic muscle activity, personality disorder, emotional lability, irritability, laceration, and mood changes. Other side effects include: tonic clonic epilepsy, dizziness, vertigo, decreased neutrophils, depressed mood, neck pain, and pain. See below for a comprehensive list of adverse effects.

More Common:

Aggressive or angry
anxiety
change in personality
chills

cough or hoarseness
crying
depersonalization

diarrhea
dry mouth
euphoria
fever

general feeling of discomfort or illness

hallucination
headache
hyperventilation
irregular heartbeats
irritability

joint pain
loss of appetite
lower back or side pain
mental depression
muscle aches and pains
nausea
painful or difficult urinationparanoia
quick to react or overreact emotionally
rapidly changing moods
restlessness

shaking
shivering
shortness of breath
sleepiness or unusual drowsiness
sore throat
stuffy or runny nose
sweating
trouble sleeping
unusual tiredness or weakness
vomiting


Less Common:

bloody nose
burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
clumsiness or unsteadiness

discouragement
dizziness or lightheadedness
double vision

earache
feeling of constant movement of self or surroundings
feeling sad or empty
increase in body movements
loss of bladder control
loss of memory
mood or mental changes
outburst of anger
pain or tenderness around the eyes and cheekbones
problems with memory

redness or swelling in the ear
seizures
sensation of spinning
shakiness and unsteady walk
shakiness in the legs, arms, hands, or feet
tightness of the chest
tiredness
trembling or shaking of the hands or feet
trouble concentrating
unsteadiness, trembling, or other problems with muscle control or coordination

Incidence Not Known:

Attempts at killing oneself
being forgetful
bleeding gums
blistering, peeling, or loosening of the skin
bloating
blood in the urine or stools
bloody, black, or tarry stools
blurred vision
changes in vision
chest pain
constipation
dark urine
difficulty with moving
fast heartbeat
fever with or without chills

general feeling of tiredness or weakness
high fever
increase in body movements
indigestion

itching
light-colored stools
muscle pains or stiffness
painful or difficult urination
pains in the stomach, side, or abdomen, possibly radiating to the back
pale skin
pinpoint red spots on the skin
red skin lesions, often with a purple center
red, irritated eyes
sores, ulcers, or white spots on the lips or in the mouth
stomach pain, continuing
swollen glands
swollen joints
thoughts or attempts at killing oneself
trouble with balance
twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
uncontrolled jerking or twisting movements of the hands, arms, or legs
uncontrolled movements of the lips, tongue, or cheeks
unexplained bleeding or bruising
unusual bleeding or bruising

upper right abdominal or stomach pain
weight loss
yellow eyes or skin

General:

The more commonly reported adverse reactions in children have included fatigue, aggression, nasal congestion, decreased appetite, and irritability.

Nervous system:

Very common (10% or more): Headache (14%), somnolence (14%)
Common (1% to 10%): Dizziness, ataxia, vertigo, paresthesia, coordination difficulties
Postmarketing reports: Choreoathetosis, dyskinesia

Psychiatric:

Very Common (10% or more): Non-psychotic behavioral symptoms (up to 38%), psychotic symptoms (up to 17%)
Common (1% to 10%): Depression, nervousness, amnesia, anxiety, hostility, emotional lability, irritability, mood swings, hypersomnia, insomnia, apathy, tearfulness, negativism
Postmarketing reports: Panic attack

In studies, non-psychotic behavioral symptoms (reported as aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability, hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder) were reported in 38% of pediatric patients aged 4 to 16 years compared to 19% in placebo patients. Dose reduction or discontinuation due to behavioral symptoms occurred in 11% of pediatric patients.

Hematologic:

In pediatric patients 4 to 16 years old, mean decreases in WBC and neutrophils were 0.4 x 10(9)/L and 0.3 x 10(9)/L, respectively, compared to small increases in placebo patients. Mean relative lymphocyte counts increased by 1.7% in patients receiving this drug (placebo=decrease of 4%).
Common (1% to 10%): Decreased white blood cell count (WBC), decreased neutrophil count, increased lymphocyte counts, higher eosinophil counts
Frequency not reported: Decreases in white blood cell, neutrophil, and red blood cell counts; decreased in hemoglobin and hematocrit; increases in eosinophil counts
Postmarketing reports: Pancytopenia (with bone marrow suppression reported in some cases), thrombocytopenia, agranulocytosis

Hypersensitivity:

Postmarketing reports: Anaphylaxis

Dermatologic:

Alopecia reported with this drug resolved with discontinuation of therapy in most cases.
Frequency not reported: Stevens-Johnson syndrome (SJS), toxic epidermal necrolysis (TEN)
Postmarketing reports: Erythema multiforme, alopecia, angioedema

Other:

Very common (10% or more): Asthenia (15%), fatigue (10%)
Common (1% to 10%): Pain, vertigo

Respiratory:

Common (1% to 10%): Pharyngitis, rhinitis, increased cough, sinusitis

Gastrointestinal:

Common (1% to 10%): Diarrhea, gastroenteritis, constipation
Uncommon (0.1% to 1%): Nausea
Postmarketing reports: Pancreatitis

Ocular:

Common (1% to 10%): Diplopia

Hepatic:

Postmarketing reports: Abnormal liver function tests, hepatic failure, hepatitis

Musculoskeletal:

Common (1% to 10%): Neck pain
Postmarketing reports: Muscular weakness

Immunologic:

Very common (10% or more): Infection (13%)
Common (1% to 10%): Influenza
Postmarketing reports: Drug reaction with eosinophilia and systemic symptoms (DRESS).

Metabolic:

Common (1% to 10%): Anorexia
Postmarketing reports: Weight loss, hyponatremia

Cardiovascular:

Very common (10% or more): Increased diastolic blood pressure.

Renal:

Postmarketing reports: Acute kidney injury

Photo by Michael Kolster