Showing posts with label regret. Show all posts
Showing posts with label regret. Show all posts

12.31.2019

hopes and regrets

regrets:

having said the wrong thing. having said the right thing at the wrong time. a handful of half-read books on my nightstand. thin patience. having missed seeing david byrne on broadway. too much complaining. letting time slip through my hands. knee-jerk reactions. time on social media. missed and mixed priorities. complacency. too much focus on politics and the news. pettiness. friends' unanswered emails in my inbox that are over a year old.

hopes:

carve time out to read books during the day. get more sleep. work on my neglected memoir. take up running for the umpteenth time. get out with my girlfriends more often. more simple pleasures like bringing cut flowers into the home. be a better correspondent. get out of town. praise more, complain less. help elect a decent, experienced, respected, measured president. seizure freedom for calvin.


12.19.2019

hard conversations

I sometimes speak with schoolboys and girls about my son. I tell them he is the best person I know. Not because he's my child. Not because he goes through hell and comes out the other side. But because he doesn't have a mean bone in his body. Calvin loves everyone no matter how fat or wrinkly or dark or skinny or disabled or poor or old or conservative or devout or liberal or ugly or American they are. He makes me want to be a better person every day, and yet I fail.

At a dinner party, I squabble about stories I feel are at best unconscious or implicit bias and at worst bigoted tropes being tossed around the table. Heart pounding, I struggle with whether to say something. Recklessly casting my doubts aside, I dive.

"Now might not be the best time to tell you I am Jewish and Black," I say, which everyone knows is false. I'm trying to make a point, condemn what I find offensive. Immediately, I regret my timing and reaction, my stinging words ruining what is meant to be a fun-filled evening and weekend.

I try to explain my perspective, recounting a time years back when I'd ignorantly used the term "White Trash," thus offending someone, not because she was poor—the comment was not meant to describe her—but because the term is an ugly slur for folks simply trying to eke out an existence. I hadn't before thought it offensive, but realizing with newly-opened eyes my affront, I apologized and have never again used the term. Then someone at our table defends the slur, perhaps to make me feel better, saying that anyone—White, Black or Brown—can be trash. I fiercely insist that human beings aren't trash, silently recalling the dehumanizing rhetoric of despots in describing good people as scum, rats, snakes, infestations. I think of the pathetic detention of refugees in our own nation. Tyrants and fascists seek to malign, blame, shun and eliminate those they deem unworthy. I think of Calvin. The conversation splinters.

I want to ask why being poor and underserved makes someone garbage. I wonder who in our circle, including ancestors, might have been considered as such, wonder how they were treated. I question if judgment is righteous when what it condemns sounds like bigotry. Rather, is the criticism of prejudice prejudice itself?

Still, I regret my initial timing and response, not because my reaction is at once deemed judgmental, but because I hurt someone I love very much. I did not consider fully the goodness of those I chastised. In doing so, did I aggrandize myself? I fear I was too hasty and harsh in my appraisal.

In a hurried moment after dinner I again attempt to address my reaction. First, I apologize for my folly. I want to describe White privilege to someone who has succeeded in the face of great adversity. I don't contest the hard work of anyone, their rising above neglect and conflict, their beating the odds, their ability to shine so brightly when so much of what they have come through and surrounds them is and has been hardship. These truths are evident. But they are not sole truths in existence. What I want is the time and space to say this:

If our names were Ashanti or Trayvon instead of names like Jennifer or John, we might not have gotten that prized interview, that job, that promotion, that apartment, that loan, that house in that nice neighborhood. We'd likely be making far less and paying far more than if our skin were whiter. Our net worth might be ten times less than those of our White contemporaries. If our boys were Black rather than White, depending upon where we live, they'd be three to six-plus times more likely to be pulled over, ticketed, fined, arrested, incarcerated, sentenced—perhaps even shot—for the same infraction as their White counterparts, or for having committed no infraction. If we were Black or Brown, we'd more likely live in food deserts, get subpar educations, drink tainted water, get inferior medical care and insurance, if any, receive less pain management, and be more likely to die in childbirth or languish behind bars. And if our Black children survived, they'd be far more likely to face punishment and detention for the same behaviors as fair-skinned students. If we were Black or Brown, we'd be far more likely to be the victims of predatory lending and voter suppression, far more likely to be thought suspicious, to be stalked in neighborhoods, to be convicted of crimes we didn't commit. It is truth that in this nation white skin affords a smoother, safer path through life and to prosperity than black and brown skin does, which is not the same thing as saying it is necessarily easy.

Later, someone uses the slur "dumpster divers" to describe homeless people, going on to say the majority of them choose to live on the streets and therefore don't deserve her charity. She says, essentially, that reverse racism is a thing. These notions are myths, easily disproved with the slightest scrutiny. For one, prejudice does not equal racism; racism is prejudice plus power (think 400 years of slavery followed by Jim Crow, segregation, state-sanctioned denial of civil rights, the War on Drugs, and current-day voter suppression and mass incarceration all backed by White authorities or, as a friend said, bigotry empowered by the system.) But I don't have a chance to debunk, which is frustrating and regrettable. I'm left wondering why the destitute so often garner contempt rather than compassion.

I go see Aaron Sorkin's adaptation of To Kill A Mockingbird. I know the story well. I watch the cast of characters—Whites, Blacks, fathers, lawyers, judges, motherless children, maids, innocent defendants, witnesses, poverty-stricken victims, abusers, Klansmen, heroes. Bob Ewell is a poor, White, drunken, racist, deceitful, bullying, abusive, widowed father of eight, and yet I wince when Atticus Finch says he's better than Ewell. I know what Atticus means. But contempt is no virtue, and so I find myself pitying the loathsome offender, but I physically ache for the innocent and doomed Tom Robinson and his family, who are Black, and therefore shackled in most every way imaginable.

I exit the theater making my way through crowded, misty streets thinking about the play and mulling over my earlier exchanges. These are hard conversations, requiring space and time and trust and openness and humility and listening. There are unknown truths we must all unearth, but best with love, respect, acceptance, tenderness, understanding and forgiveness. I close my eyes and think once more of Calvin.

Photo by Michael Kolster

8.09.2019

when grace goes out the window

Partway through reading my friend Chris Gabbard's recent memoir, A Life Beyond Reason, I came across the word grace, and was emotionally stunned. Chris uses it to describe a commitment he made to raise his son August with as much poise and kindness as he could muster. August, like Calvin, had cerebral palsy and was legally blind, non-verbal and incontinent. Unlike Calvin, his condition was the result of injuries he suffered during a medically negligent and reckless childbirth. Reading the word grace, I felt a deep sense of shame and regret, since too often when caring for Calvin, any semblance of grace I might be able to muster, inevitably goes out the window. And though I can blame any number of reasons for my graceless behavior—sleep deprivation, agitation, resentment, monotony, grief, impatience, anger, frustration—I still feel remorseful of my inability to be wholly graceful when caring for such a pure, affectionate, faultless little kid. 

In the heat and humidity of early evening while strolling alone in the garden yesterday, Michael having gone to Boston for the night, I heard, via the baby monitor slung around my head, Calvin banging the wall behind his bed. I made my way up to his room and was greeted by the stinky news that he had pooped. After unfastening the safety netting and side panel of his bed, I first sniffed his fingers. Yep. He had put his hand down his diaper and into the shit ... again. Exasperated, I grit my teeth. I wiped him up, gave him a new diaper, and spread copious amounts of sanitizer on his hands. All the while, I bitterly and openly lamented the fact that, despite how often this happens and no matter how many ways I try to explain to him why he shouldn't do it, it never seems to sink in. I rubbed his palms and fingers down, cleaning underneath each fingernail with half a dozen baby wipes. I changed his pants and shirt, which were both wet, then put him back into bed. When laying him down, I noticed a brown splotch on his clean sheet and another on the wall above his head. I tried hard to contain my vexation, tried to emulate my friend Chris, and to act with grace. But in my state of cumulative and acute sleep deprivation, plus a certain kind of traumatic stress disorder from fifteen years of rearing a boy with chronic epilepsy who it still a lot like an infant, I lost my head.

"GODDAMMIT!" 

I screamed at the sheet, at the walls, at the bed, at myself, at my son. Luckily, Calvin remained visibly unfazed. No doubt, however, with all the windows open, any passersby or neighbors could have heard my ugly distress. The grace I tried to hold in my body's vessel, in my brain and spirit, went right out the window instead.

I apologized to Calvin and to Nellie. I should apologize to the neighbors just in case. I forgave myself for the eruption which came on the heels of a buildup of worry, frustration, pressure and tension. But when I woke up this morning, I was uniquely aware that I hadn't spent the night clenching my teeth.

12.31.2017

hopes, regrets and lamentations

hopes:

better times for my child without benzodiazepines on board. an end to his night terrors. more time outside and with friends. fewer seizures, fewer meds and better development for my boy. early spring. visits from faraway friends. more women and people of color in congress and in power. progress on my memoir. another visit to new york. more silver-gray hair. to see san francisco and seattle again. more time carved out to read good books. daylight dates with hubby. more love, forgiveness and gratefulness.

regrets:

harbored resentments. not enough naps. not enough exercise. not enough time with my homies. self-righteousness. not enough fish, vegetables and fruits. these six or seven pounds. grumpiness. not getting to the beach in months. exhaustion. impatience. pettiness. snark. spite. self pity. too much time spent inside by myself. not catching up with faraway friends.

lamentations:

the closing of bart's dvd rental store. the current president, his cabinet and other lackeys. conservatism. social media blues. patriarchy. white supremacy. oligarchy. deniers of white privilege. racism. bigotry. sexism. poverty. deceit. religious zealotry. greed. war. famine. misogyny. genocide. want. condescension. inequality. mass incarceration. pharmaceutical nightmares. bootstrap theories. police brutality. impunity. ignorance. neglect.

Photo by Michael Kolster

12.23.2016

hopes, regrets and lamentations

hopes:

Fewer seizures in two-thousand-seventeen. To get Calvin safely off of his benzodiazepine. Time in warmer climes. To hear Calvin speak a word. More time outside. For the world to be at peace. Continued health. More time to write. To see more of my peeps. Forgiveness. To become a better human being. For the liberty of those who live under tyranny. The understanding of others. Love and humanity. An end to war and starvation. Leaders who are deserving of respect and admiration. More time to read and sleep. Freedom and equality.

regrets:

Self pity. Cranky mama. Selfishness. Missed opportunities. Falling-out. Staying put. Loss of contact. Too few walks through the woods. Not getting to San Francisco, Seattle or New York. Not drinking enough water. Impatience. Resentment.

lamentations:

Too many seizures. Too many missed days. Ugly Americans here and abroad. Racism. Bigotry. Misogyny. The regrettable exit of President Obama and his family. Monotony. Frustration. Dread. The election of an infantile, boorish, ignorant, dishonest, narcissist fiend. Greed. Corruption. Dying children. Torture. War. An incoming loser with a facile and grossly limited world view. Hate. Despots. Oligarchies. Fascism. Cowards. Fools.

Photo by Michael Kolster

12.31.2013

hopes and regrets

regrets:

impatience. spite. grumpiness. rudeness. isolation. lack of priorities. flabbiness. neglect. worry. distraction. stress.

hopes:

more reading and writing. respite. sleep. relaxation. girlfriend get-togethers. patience. kindness. exercise. concentration. prolificacy. wellness. seizure-free son.

photo by Michael Kolster

10.19.2013

loathing

As if some loony in a Stephen King novel, I raised the spade above my head and slammed it down hard in a fit of rage. Its wooden shaft vibrated in my hands though it didn’t break. Rudy looked at me curiously but without alarm. Across the freshly cut lawn the sun cast long shadows through the trees announcing the clench of autumn and the coming close of day. It had been a glorious one, the kind of day that, because I didn’t fully take advantage of it, stabs me in the gut with regret, worry, want: a spotless sky, a light breeze, an endlessly warm sun. Where did the day go? And my heart sunk into my heels at the thought of time wasted.

Earlier, I’d wanted to reach through the phone and strangle her: the perky woman announcing that I’d qualified for a one-hundred dollar gift certificate. I’d cut her off with a stern voice asking her to take me off of her list, that I had a chronically ill child and that—. The line went dead without as much as a thank you or goodbye. “F**K OFF!” I screamed into the phone, my face hot, my nerves frazzled. It’d been the second robocall of the day and had followed two other automated calls about upcoming doctor’s appointments plus a woman phoning about medical insurance.

On the way to greet Calvin’s bus I stepped in dog shit that, of recent, Rudy scatters all over the yard, deck and driveway in little chunks nearly impossible to see before you’re standing in it. Calvin got off the bus a bit red in the face. Mary said he’d been super hyper all day and hadn’t pooped. All I could do was think, he’s gonna have a seizure. He shrieked for several hours then had a messy blowout in his pants. A shit-covered piece of grape escaped his diaper and landed on the hallway floor. I had to pick it up with my bare hands so Rudy wouldn't try to eat it. Loose stool smeared down Calvin's thigh, and he squirmed and shrieked like mad making it difficult to clean him up. I felt myself spiraling into that dark place that I hate going, powerless against its gravity. My view narrowed to black and at that moment I felt lost and trapped, haggard and weary, tense and bothered, worried and alone and beaten. But worst of all, in that splinter of a moment, I felt loathing for my child.

4.26.2013

friday faves - sick. lovesick.

Sometimes—often lately—I get sick of the whole damn thing. It all feels so ludicrous and pathetic while at the same time heart wrenching, tragic and miserable. I am sick of the seizures and the medicine. I get sick of Calvin’s idiosyncrasies; his incessant eye poking and staring at the sun, his wretched screaming, his constant drooling, his manic flailing and coughing. I get sick of him throwing everything on the ground as soon as we give it to him. I get sick of changing diapers. I get sick of his poor balance, of his inability to truly explore his world. I get sick of him trying to bite everything: tables, chairs, magazines, mullions and windows, his shoes, the car, the counter, the water faucet, the hamper, the bookshelves, his books and toys, the zipper on his coat, his glasses, his bed, me. Sick, sick, sick of it all.

And though Michael has helped me begin to understand that I may have some sort of superhuman patience and the ability to maintain calm vigilance over these things, I often don't feel like I do. At times I get so sick of it all I just have to scream at the top of my lungs at the whole sorry situation. While it doesn't seem to faze Calvin it does me little good but to feel wretched, but then—too late—I look at my beautiful boy who can't talk and is on massive antiepileptic drugs, and am reminded that he can't always help himself. In an instant all of my feelings of anger, self-pity, annoyance and tension dissolve into tenderness and love. For all of his peculiarities and quirks Calvin is a darling. He’s pure through and through, lovely and affectionate. There isn't a cruel or malevolent bone in his body, rather, he strives to do his best to please in most any circumstance, (though is developing a stubborn streak.) But I couldn’t ask for a finer son who shows me every day how I can be a better person.

Originally published 11.30.10.

June 2007

12.31.2012

hopes and regrets

regrets:

Selfishness. Impatience. Inattentiveness. Disorganization. Neglect. Churlishness. Negativity. Gossip. Procrastination. Criticism. Worry.

hopes:

Patience. Productivity. Focus. Seizure-free, drug-free Calvin. Wiggle room. Repose. Travel. Exercise. Adventure. Hug Mom. Read. Read. Read. Tranquil child. Long walks. Sound sleep. Write book.

photo by Michael Kolster

9.02.2012

stardust and golden

Well then can I walk beside you
I have come to lose the smog
And I feel as I'm a cog in something turning
And maybe it's the time of year
Yes and maybe it's the time of man
And I don't know who I am
But life is for learning

We are stardust, we are golden
We are billion year old carbon
And we got to get ourselves back to the garden
 

—Joni Mitchell, from Woodstock

Every once in a while I see someone who reminds me of my dad: tall, thin, mostly bald with a band of white hair like a wreath slung around the back of his head. My dad would have been 87 this year. He was a pillar of strength and he should have lived far longer had it not been for the cancer that had completely consumed him by the age of seventy.

Michael and I watched a movie last night that made me think of my dad, of when he was sick. Christopher Plummer was the man who, in some ways, reminded me of him. As I watched the scenes of Hal in the hospital, Hal with his son, Hal at home in his hospice bed, I regretted not being at my dad’s side in those final weeks and days. When I said as much over coffee this morning, Michael reminded me that my family had kept things from me, had tried to shelter me, hadn’t told me until he'd returned home that—weeks before his death—Dad had been in the hospital, twice. I’ve always resented that. Perhaps I’d have jumped on a plane to be there sitting next to his hospital bed as my father battled pneumonia, been able to walk with him down the shiny linoleum hallways wheeling his IV along on a tall, aluminum pole. But my family, thinking it would be better for me, didn’t let on, as opposed to honoring my right to know as Dad's youngest adult child.

And so today I am missing my dad and thinking of that last telephone conversation we had from across the country on the day he died. Perhaps he’d known I’d been with him in spirit every day while he was sick. Every night, in my San Francisco flat, I’d dim the living room lights, roll up the white wool Berber rug, light some candles and a joint and perform a sort of meditative rain dance to this one particularly beautiful, eerie, cancerous song, hoping for Dad to finally be at peace. Then I’d cry for him.

Thinking of you dad. You are stardust, you are golden. But then again, you always were.

Me and Dad, 1965

9.01.2012

crystal ball

It's very easy to kick myself. I'm good at it, especially since Calvin was born. I wish I had some crystal ball into which I could gaze and know all the answers in a blink of an eye. Instead, it takes months—years sometimes—just to begin to figure out the riddle of Calvin's seizures with each various treatment we try in an effort to thwart them, send them off course, obliterate them. As a result, I often look back and kick myself for acting too slowly in certain circumstances.

Why did we keep Calvin on that Ketogenic diet for two whole years when it didn't make a dent in his seizures? I thought, as I watched and listened—headphones on—to the neurologist sitting next to me in the studio of a recent radio call-in show about epilepsy. He said what I already knew: that it only takes a few days or weeks to determine if the Ketogenic diet will be effective. For some, it is very effective. For Calvin, it never was. Instead, it weakened him and robbed his ability to do so many things he'd just mastered, like crawling up the stairs and getting into standing by himself. Why so long? Because I am cautious and hopeful, perhaps too hopeful, holding on with a white-knuckle grip to each new treatment as if my child's life depended on it (which it does) thinking each one will be the silver bullet if I just give it enough of a chance.

I wish someone would shake me and say, it's been two years ... enough already! I suppose the universe did that for me when Calvin stopped tolerating the diet, when his seizures doubled, the result of weaning him from one of the three drugs he'd been on that made him into such a complete zombie. But every incremental change from one drug to another—off of one diet and on to another—takes so goddamn long it's excruciating. Would someone please invent that crystal ball? Until then, the only glassy orbs I can get lost in will be Calvin's indigo eyes and, while they say a lot, they only tell me half the story.

May 2005

12.31.2011

hopes and regrets

Regrets:

Self-absorption. Stupid things I’ve said and done. Impatience. Dirty, crumby, dusty house. Not calling my mom enough. Worry. Beating myself up over past decisions. Too little exercise. Vanity. Gluttony during the holidays. Disorganization. Animosity. Poor correspondence with friends and family.

Hopes:

A seizure free life for Calvin with no more drugs. A few more good years with Rudy the dog. A mild winter and an early spring. Time to walk in the woods. Eat more vegetables. More out of town visitors. Growth. Enough food, warm homes, health and prosperity for the needy. Deepening friendships. Great success and happiness for my husband. Continued progress for Calvin. A fun and successful Cure Epilepsy benefit in February. To see my mother soon. A visit to New York City. Get into the pool. Make more time to read. Healthy minds and bodies. For my readers to continue to share Calvin's story with others.

From our home in Maine, Happy New Year to you all! May you leave your regrets far behind and realize your hopes and dreams.

Michael, Calvin, Christy and Rudy the dog