aches and pains

Of late, I wake with achy joints—middle fingers, ball of my foot, small of my back. In dreams and while padding around the house, I clench my teeth. Is this a sign of fifty-six, or of resentments settling in my bones? If the latter, can I let them go and, if so, how?

I must be able to free deep-seated bitterness from a long history of hurt rendered by some who've claimed to love me. Can I shed my displeasure of what seems like game-playing and deceit? Can I forgive the pain of betrayal, abandonment, the strangeness of envy, the lack of respect, the failure to utter the simple words, I'm sorry that what I said hurt you. And what hand do I have in it? Michael, my best champion, claim's I've little. I'm less sure of that.

How does one go about forgetting wrongdoings, hurt feelings, odd and uncomfortable efforts to cloud the truth, malign, manipulate and fix me? I don't know. How do I go forward when trust has been broken repeatedly?

And when it comes to my son, how do I reconcile moments of adoration with those of such contempt? I wonder if releasing my other grievances—the gnawing, vexing discontent—I'll have more room to love him, less time and energy to magnify his defects. And what of mine?

Perhaps I should scrawl my complaints on paper—the ridicule, manipulation, dismissal, bullying, belittlement, one-upmanship—then wad it up and put a match to it. Maybe if I make the feelings tangible—graphite on a sheet of wood pulp—I can set it aflame and watch my indignations burn then float away as embers. Maybe then I'll be able to forgive myself, my son, the others, and from that forgiveness, melt away my aches.

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

a little less stress

Something came to me the other night in a kind of epiphany. While cozying up to Michael in bed, I was thinking about my dentist's suggestion of wearing a night guard to protect my teeth from clenching them. Assuming my teeth clenching is due to stress, it occurred to me in a flash that perhaps giving up keeping a daily journal would lessen that stress. I've kept a journal since Calvin was diagnosed with epilepsy in 2006. In it I log his behaviors, star the ones which seem to be harbingers of an impending seizure, underling or capitalizing the most vexing ones. In the outer margins I log his bowel movements, indicating their size and consistency. I circle any suppositories or pain medications I give him. I highlight medicine changes in yellow, night terrors/pain episodes in pink, grand mals in orange and partial complex seizures in blue. I note how many times I am up at night laying him back down and covering him, and draw a cloud around nights when he stays up past bedtime perseverating. Rarely do I write positive things, perhaps because of their infrequency or perhaps, in my eternal quest to fix my kid, my focus is misdirected.

I think the epiphany came as the result of something Calvin's new nurse, Sue, said to me the other day. In relating her own history of hypervigilance over a now-grown son who had intractable epilepsy as a kid, she told me he had once said, "Mom, stop looking at me." At the time he was just six.

In her anecdote, I saw myself and the way I physically and mentally hover (obsess?) over Calvin and his condition. Perhaps, if he could speak, he'd tell me to stop looking at him. It got me thinking that maybe the journal—though it has served a purpose in tracking possible relationships between Calvin's seizures and his meds—might at this point be overkill. After all, I think I've got a pretty good sense of patterns in his condition, and I'm not sure writing down omens prepares me any better for his seizures. And if need be, I can also rely on my monthly calendar where I log the important stuff like seizures and medicine changes.

Years ago, I stopped using a handmade chart to check off Calvin's daily medicines. At one time, using it was necessary considering the slew of medicines and supplements he used to get—as many as twenty-three administrations a day—and sometimes I'd forget if I'd given them. Now, Calvin takes so few medicines—Synthroid, Keppra, multivitamins, Miralax, THCA and CBD cannabis oils—that I can remember them without the use of a chart. Years ago, I also stopped listening to the baby monitor when I slept because I'd wake up at the slightest move Calvin made in his bed. Both decisions reduced my overall stress, if only a little.

So, yesterday, the journal went into a drawer. Starting today, I won't be logging anything in it. Though I'll allow myself the right to use it again, I want to see what life is like without it. Perhaps I'll stop clenching my teeth at night. Maybe I'll sleep better. Perhaps Calvin will feel less stress. Maybe in turn he'll seize less. Maybe its absence will open up scads more time for me to do other things instead. Who knows? The possibilities are endless.

looking back

In May of 1995 I was thirty-one and living on Ashbury Street in San Francisco, a block and a half up from Haight. I’d just dumped my compulsive liar boyfriend of five years and moved from a tiny downtown Murphy-bed studio into a gorgeous, empty 1400 square foot Victorian flat with my dear friend Seti. It was one of the best years of my life. I had black hair and clip-in extensions, wore a little lipstick, was in some of the best shape of my life living in a city meant for me.

I’d just taken a thrilling five-day paddle-boat expedition down the raging Colorado River in the Grand Canyon, had begun realizing a lifetime dream of designing clothes, was driving a 1967 Ford Mustang 289, living footloose and fancy free below a couple of goofy guys—artists both—whose apartment adjoined ours by way of a backyard garden staircase that lead up to a deck overlooking Golden Gate Park to the blinking red tip of the Golden Gate Bridge and out to the Pacific Ocean.

Yesterday, Seti’s former boyfriend, Tunç, sent me some old video he’d taken of her and I that May walking from our apartment down Ashbury Street toward a favorite Haight Street restaurant called Cha Cha Cha. Watching the video cracked me up, seeing the two of us ham it up for the camera, seeing the love I had for my friends, for the city, for life.

Weekday mornings, just like everyone else, I had to wake up, get dressed and go to work, after which I’d take an outdoor swim, come home and cook dinner, eat it, with or without Seti, but always with a glass or two of red wine facing a rolling bedroom fire on a fake Flokati rug. Then, I’d put on some jazz, sit down at my drafting table and sketch until at least midnight. I had no other responsibilities besides paying the bills. I could come and go as I pleased, travel when I wanted to, visit family on a whim, go off adventuring with newly befriended strangers, stay up all night if I wanted to. My weekends were free to dine out or stay in with friends, host parties, browse vintage stores and flea markets, nap in Golden Gate Park, hike Mt. Tamalpias, snake along the coast to Stinson Beach, dress up in a sleeveless, plaid polyester pantsuit to dance with a bunch of buff, shirtless men in the back of a flatbed truck during San Francisco’s Gay Pride Parade, ride out to Ocean Beach, sunbathe nude at Baker, drink wine and listen to live music at the Beach Chalet or Yoshi's or EOS or Firefly, eat Indian and Ethiopian and Italian and Thai and Dim Sum and Mexican and French and Cajun and Californian Infusion cuisine.

After watching Tunç's videos while icing a sore back, I took my tired self upstairs. I grieved the loss of my former life to Michael. “You’ve got a lot more to take care of now,” he said softly. I looked at my nude body in the mirror, which has thickened some since then. I asked myself, had I known then what I know now, would I have wanted to have children?

As I write this, having just spoken to Seti on the phone from Los Angeles, I realize I still have the important stuff of life, even if I don't have some of the luxuries. I have Seti, I have Michael, I have Calvin—the best person I know—I don't have my dad but I have my mom, at least the essence of her, I have my siblings and a new family, I have love and laughter and my health and a beautiful home, wonderful friends near and far, a great community, a gorgeous garden, a place to make art, to write.

Perhaps I'm just trying to make myself feel better, to justify away my sadness at the loss of such freedom, but maybe that freedom was somehow hollow, or contrived, or stuffed with things that didn't matter, like hair extensions, fast cars, tight bodies, fried calamari. (Okay, nix the fried calamari from that list.)

Looking back, maybe I've just traded what was a broad life for a deep one. And, hopefully, nineteen years later, I'm still mostly me.

thinking back

I awoke to a murder of crows cackling in the trees just outside Calvin’s window. I couldn’t help but think that they were laughing at our pathetic situation.

I laid next to my boy in his safety bed, trying to remain still as possible so as not to wake him. He’d had a rough and restless night after another long seizure which had happened far too soon and just after we’d put him to bed for the night.

As I laid there, breathing shallowly while listening for another seizure, it occurred to me that he’ll be turning ten on Friday, and I began thinking back to the time when I was his age. I thought first about my friend Monica who gave up dolls so that she could climb trees and squash slugs with me. Then I thought of Jim, the cute skinny boy who played the drums and lived in the next neighborhood over. I had a crush on him for years. He's got triplets now. Then, the faces of countless friends streamed into my thoughts: Katie, whom I’ve known and loved since I was zero; Lidia, my sister-mermaid, who, unbeknownst to me, grew up in a house full of fear and abuse. If that weren't enough to endure, she later suffered her stillborn daughter. It was her writing that saved her. Then I thought of the boy who put his hand through the plate glass window above our heads on Katie’s birthday, and I wondered how I managed to come away without a scratch. I remembered Martin, the tall handsome Swede who died in a plane crash with his father the day before his twenty-third birthday, and of his best friend Andy who, at almost fifty, is now likely grasping the heartache and joy of being a new father. I thought of the B-Kellys, especially Betsy, who became my college roommate and a friend for life; thought of Rick and Kyle and Jenny and so many others who’ve graced my dreams for years, all of whom I could call up now if I had to, knowing they'd be there for me.

Calvin has no friends, not really. He doesn’t have play dates or sleepovers or parties. He doesn’t ride bikes, skip stones or climb trees. He doesn’t spy on girls or chalk up sidewalks or win blue ribbons in swimming. He won’t look back fondly on the adventures of youth, won’t have memories of his best friends, his favorite pair of sneakers, his first kiss.

Finally Calvin stirred, and with that the day began. A day like any other, really. He whined most of the morning, put his hand in the yogurt, poked his eye, bit the bookcase, tripped over the chair, tried to eat his slipper, dropped his sippy-cup, stared at the sun, flailed on the changing table, shrieked in the car, fell backwards in the cafe, drooled up a storm and scratched my face, though not on purpose. “Calvin has ruined my life,” I grumbled to Michael as we headed down a street caked in sand and salt. “He’s ruined mine too,” he replied quite matter-of-factly. He went on to say that, if not for Calvin, we might be in Hawaii now. Or Italy, or California, I thought, at some residency or villa, Michael working on his Guggenheim Fellowship project while I'd be writing in cafes and strolling along beaches with nothing but my thoughts.

“But maybe, without Calvin, I wouldn’t have found my writing,” I finally added after milling these thoughts over for hours, "and look at all of the wonderful people we’ve met because of him." Michael nodded. I pondered what it might be like not having had kids, considered the immense freedoms I’d have. Then I realized—felt—the growth Calvin has afforded me, the amazing chance to see the world from a completely different perspective, to care for a life more than my own, to sacrifice—yes—but also to reap the rewards of the unconditional love of a child. My child. "But are you happy?" I asked Michael, to which he responded with something like, "Sure. Of course," and I believed him. I guess I’m a better person for having had Calvin, I decided in silence, despite the circus that my life has become. And I heard the murder of crows squawk again, this time as if in accord.

Me and my friend Pam when we were nine or so.

forgiveness

With a Chapstick in my hand I scrawled the words YOU SUCK on the upstairs bathroom mirror, then stepped back to admire my work. In its reflection I flossed and brushed, chuckling about my response to what had just happened.

It’d been a silly incident, a prank that had been played on me one-too-many times and which had lost any humor it might’ve once held partly because I was too goddamn tired to endure it. In front of our friend Charlie, who is no stranger to our marital banter, I rebuked my husband, asked him to please keep the music down, once and for all, then excused myself and went up to sleep in the room right above the stereo.

Lying in bed I could still hear their voices, though thankfully not the music, which had, as I had hoped, been kept at a reasonable level for my benefit. Chronically sleep-deprived from year upon year of multiple nightly wakings to check on Calvin who is rustling or crying or uncovered or having a seizure, I had no problem falling right to sleep.

A couple of hours later Michael crawled into bed and scooted up next to me. “You suck, too,” he told me in a low voice not quite a whisper. “I know,” I replied, and I heard his breathing slow then deepen, felt his warm legs next to mine, heard the hum of the baby monitor by my head then drifted—again—off to sleep, with the satisfying knowledge that, as quick, relatively painless and easy as usual, all had been forgiven.

think again

If you think you've got it bad, think again. Donate to help Typhoon Haiyan victims:
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Photo by Noel Celis/AFP/Getty Images

Photo by Erik de Castro/Reuters

Photo by Romeo Ranoco/Reuters

Photo by Noel Celis/AFP/Getty Images

Photo by Dondi Tawatao/Getty Images

gratefulness

you. sunshine. roses. quiet. nurse. hosta. time. almonds. birds. neighbors. security. husband. chocolate. seizure-free days. wine. date night. calvin. escape. motorcycle. wind. rivers. girlfriends. drug reductions. trees. prose. poetry. fiction. hemmingway. bourbon. rain. green. sleep. memories. visitors. clouds. lobster. dreams. reflection.

angels and thugs

On Monday I wrote a post on the Trayvon Martin shooting called To Kill a Mockingbird, expressing my regret about the incident, its handling, its outcome, about racism and about the ignorance and hatred some express toward those who are seen as different. One reader commented:

Trayvon was a thug going down a path in life of criminal choices and messed with the wrong "white cracker" as he put it and paid the ultimate price.

I responded to the anonymous reader by noting that Zimmerman, the pursuer, was in fact the one with the violent criminal record, while Trayvon, the victim, was an innocent teen minding his own business, likely trying to defend his own life against an armed predator. He did not deserve to die.

In a stream of consciousness, I thought about my cute, sweet, innocent son Calvin, and the remarks I sometimes get such as, “He is an angel who was put on earth to teach us something.” I can’t help but think that these comments—the one in response to my blog post and the ones said about Calvin—are somehow, however odd it may sound to some, similar.

To say that Trayvon Martin was a thug—a boy with no criminal record, a boy not unlike most American boys his age, similar to boys I grew up knowing who cut school, clowned for the camera, perhaps smoked pot, wore hoodies and sneakers, flipped the bird—smacks of racism, a convenient attempt to lay blame on the black victim in the same way a rape victim is often seen by misogynists as somehow culpable for her attack. To say that Trayvon was a thug ignores—while at the same time epitomizes—the miserable truth about racism and racial profiling and their egregious impact on our criminal justice system, on our prisons, on the safety, harmony and cohesion of our society. It surrenders to stereotypes rather than facing facts, as uncomfortable as they might be for some individuals: that a black male youth was the victim, not the miscreant. Trayvon was not a thug.

Similarly, to say that my disabled, developmentally delayed, non-verbal, seizure-ridden, drugged-up little boy Calvin was put here to teach lessons to those of us privileged enough to have good heath and fit brains, succeeds in ignoring the pain, burden and senselessness of a suffering child. It is an effort to make it all okay, to mitigate what is most unfortunate and harrowing rather than facing the many truths of a disabled child’s life, which, along with joy, often includes hurt, frustration and heartache. To justify a child’s existence in this way is to say that somehow it is their charge in life, that their suffering was meant to be. How else can the words be interpreted? Certainly, I have the ability to learn from Calvin, which I have done and continue to do, but he is not here expressly for that purpose. There is a distinction. Calvin did not deserve to pay the price of poor health for my gain. Calvin is not an angel.

Yesterday morning I saw a very sad video of my friend’s child, August. He is a boy who has a lot in common with Calvin, though he is several years older. For unknown reasons, August has regular bouts of extreme extension, lasting days on end, causing him to arch in a way that appears impossible for a body, even a young one, to do. In the video August whimpers and groans, and in his pain I see my little Calvin, who often exhibits discomfort, which at times is difficult if not impossible to ascertain or remedy. Though the video includes a caution as to its disturbing nature, I chose to watch, did not avert my eyes, because I want to know, I want to tell people everything about our children, that they are often happy, sweet kids but that they are also sad and often suffering. They are not on this earth to improve us. They are just here and we are here for them, and thought it might sound harsh, it is presumptuous and flabby to say otherwise, even if it is intended to be kind.

To hold these beliefs—that Trayvon was a thug or that Calvin is an angel put here to teach us lessons—is to dismiss one’s self from the messy reality of life’s inequities, to turn a blind eye to the hard questions and the difficult challenges that racism, disability and suffering present to those who experience them and to the larger society, simply because somehow it’s easier, it’s comfortable, it’s convenient just to believe in angels and thugs.

to kill a mockingbird

Back in my late twenties I entered into a five year relationship with an African American man named Jim. Despite the fact that he was smart, handsome, charming and funny, the relationship had its problems, the least of which was race. But what I learned during those five years has stayed with me, and I’ve used those lessons to try to improve myself, and the world, in whatever small ways I can.

What I learned was that Jim, like the rest of us, had been taught—wrongly—by society to fear black men. I learned that most black men—innocent ones—get stopped on the street, pulled over, harassed and bullied by white men in uniform for nothing other than minding their own business. I see vignettes of these injustices and discrimination frequently: the young black man in front of me about to board the airplane who is the only person asked to check his bag; the sharp dressed black man in the department store who is mistaken for the clerk; the African American restaurant guest who is purposefully neglected by the staff; the racist, bigoted Facebook posts about black men and prison garb.

Saturday’s verdict in the George Zimmerman case—an acquittal handed down by a mostly white jury—reminded me again of the gross injustices that occur in this country from small scale to large, reminded me that we might be better off if we lived in mixed communities rather than gated ones, reminded me of the countless times I’ve heard white people complain that they shouldn’t have to apologize for slavery, and how I’ve told them that they’re missing the point, that what society must put right is the continued oppression of black people.

Years ago, I remember my mother remarking on a dapper, tall black man stepping out of a luxury car. Her take was that he must’ve been a professional basketball player. “Why not a lawyer or a doctor or a banker, Mom?” and she seethed and spat angry words at me for what she felt was my judgment of her. Her ignorance and subsequent reaction to my query made me ill. And It wasn’t that long ago that I heard someone close to me use the N-word. I chastised her, because I believe people must be held accountable for their words as well as their actions, lest those insulting words spin out of control into hateful ideals and paradigms, into contempt, into vicious conduct fueled by that hate.

While unravelling in the shower, my mind poured over images of Trayvon Martin, the unarmed youth carrying skittles and iced tea who was gunned down by an over-zealous wannabe cop with a violent criminal past. Then I thought of the teens and young men with autism and Down syndrome who have died at the hands of security officers who used excessive force because of their ignorance, because of their fear, perhaps because of their loathing. I thought about the gawks and stares—and occasional rude remarks—that Calvin and I get every time we go out in public, which sometimes reek of disgust, even glowering in the eyes of some children—yes, children whose behavior is most obviously and purposefully ignored by their parents.

Then I reeled thinking of the Central Park Five, of Rodney King, of Martin Luther King Jr., of Oscar Grant gunned down at point blank range by a Bay Area Rapid Transit officer in the Oakland Fruitvale station, of the countless stories of African American men, women and children who have died—unjustifiably—at the end of a white man’s gun, in a burned-out church, at the end of a noose. I thought of the millions of black men incarcerated for years in jail cells or on death row, no doubt many innocent of their charges or serving weighty sentences for ridiculously non-violent crimes.

And then finally I am reminded of Harper Lee’s To Kill a Mockingbird, wherein a crippled black man, Tom Robinson, is convicted by an all white jury of a crime he didn’t commit against a white girl who was being abused by her father. I came across this passage of young Jem speaking to his father, Atticus Finch, who had defended Tom in court:

"Atticus—" said Jem bleakly.
He turned in the doorway. "What, son?"
"How could they do it, how could they?"
"I don't know, but they did it. They've done it before and they did it tonight and they'll do it again and when they do it—seems that only children weep. Good night."

I’m weeping, Trayvon, I’m weeping, and so too would Calvin be if only he could know.

Trayvon Benjamin Martin, February 5, 1995 – February 26, 2012

friday faves - wake up

I wake up in the morning, roll out of bed and stub my toe—the bad one that I jammed last summer that still isn’t quite up to snuff. I stumble to the bathroom and catch the door jam with my shoulder, eyes not quite open yet, brain still in neutral. I look in the mirror, and although I'll be fifty years old in the fall, I think I see a pimple on the end of my nose, though I’m not quite sure because I can barely see that close anymore without my reading glasses.

I go get Calvin out of the crib, set him on the changing table and undo his diaper. Like a water fountain, an arch of warm liquid gold hoses me down. He almost never does that. Oh well, there are worse things. I help him get dressed and we head down the stairs as he grabs my nose—right where the pimple is—yanks my hair out and pokes my eyes all with utter lovingness. It’s been too long since I’ve clipped his tiny razor sharp fingernails and I feel it, like when I used to teach swimming lessons to frightened little kids who'd dig their nails into my chest.

Downstairs, I plop Calvin into his high chair and pinch my finger in the tray locking mechanism that doesn’t even work anymore so I have to jam a knife into it to make it stay in place. If I’m lucky, making his meal is uneventful. As I feed him and give him his seizure meds, my legs straddling his chair, he extends a foot into my thigh and pins my skin between his rubber-soled slipper and the wooden chair. Then he kicks the bowl of fruit out of my hand, the blueberries erupt and scatter on the ground for Rudy to suction up in mere seconds—that is, if I were to let him.

After breakfast is over I brush Calvin’s teeth. He bites the plastic bristled brush like a pit bull then suddenly lets go and a spray of toothpaste splatters into my face. With stinging, bleary eyes I unbuckle him and take him to the bathroom to play with the shutters. I catch a glimpse of myself in the large round mirror. Good thing I don’t take myself too seriously what with my tangled mess of hair—some gray, some missing—and bloodshot (toothpaste-shot) eyes. I haven't had nearly enough coffee, I've got blueberry stains and yogurt all over my robe and a big raspberry on the end of my nose that I can see clearly now that the sun has risen and Calvin has made his very best attempt at waking me up.

Version originally published 08.31.11. Some things never change.

2011

ridiculously lucky

The house was packed with music fans, mostly bespectacled, white-haired and balding, though plenty of younger folk, a few students and one or two restless babies. They wore felted wool coats, silk scarves, silver and gold and gemstones, fashion denim, flannel shirts, cordovan shoes and sleek waterproof jackets with reflector tape and velcro. They’d come from cozy restaurants or from home where wine and beer might've been served alongside plates of warm food and glasses of cold, clean water. Perhaps they’d had dessert, perhaps not, but there had likely been a choice. No doubt, many had smart phones in their palms, watches on their wrists and money in their wallets.

A few arrived in leather scented cars with seat warmers to take the evening’s damp chill out of close fitting slacks or lycra leggings. Others walked through the mist under dripping pines and maples just beginning to bud. They were warm and dry, their bellies full, and ready to devour some extraordinary live jazz in a clean, comfortable, climate-controlled college theater. I happened to be one of them and, seated next to me, Michael was another.

The music, a quartet of piano, upright bass, drums and banjo, moved me both literally and figuratively. I cannot do it justice with words but to say that I lost myself, even if just for a moment.

Once home and in bed, I rested my weary head in a perfect spoon of down pillows, pulled the comforter up around my shoulders and closed my eyes. I fell asleep with the sweet sound of music still humming in my head only to be woken minutes later by a semi-conscious boy banging his head against the padded safety panel of his bed. Muttering a string of grumpy obscenities I scooted into the next room, unhitched the netted canopy, laid Calvin back down and covered him so that he could get back to sleep.

My wretched complaints followed me back to bed where I half hoped Michael was awake to hear them and half hoped he wasn’t. I stewed and steamed for a bit, then looked out into the night and thought about Ronan’s mothers sleeping under a New Mexico sky without her little boy because he died a few months back. I thought of the murdered Sandy Hook children whose parents and siblings were awake with insomnia or asleep in their Connecticut homes, the empty beds of those lost in the next room. I thought of the hundreds of garment workers crushed in the Bangladeshi building collapse and the difficult lives they’d lived up until then. I thought of the tented cities of Haiti, the Syrian crisis, the masses of people living in war, depression, squalor, oppression, fear, anxiety, threat, burden, loneliness, uncertainty. I thought of those living lives with no money, no food, no heat, no shelter, no water, no healthcare, no job, no freedom, no safety, no opportunity, no future.

Then I thought about how ridiculously lucky I am—we are—and that even though I have a disabled child with medically refractory epilepsy, I have nothing really to complain about in the scheme of things. And then my anger and frustration dissolved like water droplets into the lattice of pines standing stark black against what appeared to be a non-threatening, shimmering white sky.

this is water (video)

Words of wisdom to live by.

once an athlete

Cyclers in their bright regalia whiz past us. I spot them out of the corner of my eye as Calvin stumbles around trees, careens into bushes, stares up at the sun, teeters and tips. When we are on the grass I let him fall with minimal support since it is soft and he needs to learn, though he may never, that when he looks at the sun he’ll tumble. His balance is for shit to begin with—you know, the seizure drugs and all—and the sun adds another vexing element to his complicated equation.

I think to myself, I’d be kicking some ass out there, as scores of toned athletes hunched over their bikes take me back to my days as an athlete. As a collegiate swimmer, in some circles I was pretty good while in others, like the PAC-10 conference, I was mediocre at best. Regardless, I’d have the advantage as a triathlete, something I’ve toyed with doing over the years since I’m also a decent runner and I know I’d do well at cycling if I had the right bike. But the four hours of training every day for years on end has soured me on the idea and has curbed my desire for getting back into the pool on a regular basis. And though my body has softened and my brain could use the regular dose of endorphins that swimming offers and, despite my age, I know my muscle memory will help get me back into shape quickly, I still find myself in a prolonged rut, making all sorts of excuses not to get back into the pool:

it’s too cold it’s too sunny i don’t feel good i’m too tired i have a headache i want to lose five pounds before i get into a swimsuit i think i'm coming down with something i want to garden instead i want to write instead i don’t feel like it i have too much to do today

And so it has been the same for nine years ... since Calvin was born. And I try to motivate myself by thinking of my glory days, of my once svelte body, of the ribbons and medals and trophies I’ve won and since given away, of the Most Inspirational and Team Captain honors which my teammates lovingly bestowed upon me in summer league and high school and AAU and college, of my All-American state championship relay in high school, of our men’s and women’s NAIA National Championship titles. Still, none of it rouses my desire.

So for now, instead of athlete, I’ll be coach and captain to my son Calvin. I’ll commit to his development and praise his triumphs and guide his progress and critique his mistakes and inspire his perseverance and set his goals and celebrate his victories and tend to his bumps and bruises, even as the colorful blur of athletes unknowingly speed past us and until one day I try again for myself.

circa 1971 when I was a couple of years younger than Calvin is today

two wolves

An old Cherokee told his grandson, "My son, there is a battle between two wolves inside us all. One is Evil. It is anger, jealousy, greed, resentment, inferiority, lies, and ego. The other is Good. It is joy, peace, love, hope, humility, kindness, empathy, and truth." 

The boy thought about it, and asked, "Grandfather, which wolf wins?" The old man quietly replied, "The one you feed."

Ghost Heart by Kirby Satler

lose one's life

One must lose one's own life in order to find it.

—Anne Morrow Lindbergh

photo by Michael Kolster

clever and wise

Yesterday I was clever, so I wanted to change the world.
Today I am wise, so I am changing myself.

—Rumi

photo by Michael Kolster