Wounded Knee

I was invited to tell a story at a recent storytelling event. This is the story I chose to recount. It is true, and as accurate as my memory permits. I have the photograph.

Summer 1986. Wounded Knee, South Dakota.


I was driving cross country with my boyfriend, Andy, and on our way back east we visited Little Bighorn Battlefield in Montana. The site was a circus: tour buses, gift shop, maps of the battlefield, pristine white gravestones. Outside the chainlink fence, outside the gate, a member of the Navajo nation manned a table selling turquoise and silver jewelry. We left without riding the tour bus, without listening to the self-guided audio tour. We left and went to Wounded Knee. It was a day’s drive.
When we got there, we found one historical marker and a graveyard roughly the size of a family plot here in Delaware County. The entrance to the graveyard was marked by a brick and concrete archway, with some metalwork on top. There were bricks missing; the mortar was crumbling. We read grave markers: Elizabeth Fast Horse. Ann T. Respects Nothing. Wooden crosses hand lettered. We wandered through the plot, weedy, overgrown, crumbling. Next to the graveyard there had been a building but all that remained in 1986 was a cinderblock foundation.


We stood there, taking it all in, when a child arrived. If you are unfamiliar with the South Dakota landscape, there are no trees. No bushes, no shrubs, no houses, no buildings. Just emptiness, dust, sky and locusts. The boy just appeared, materialized out of the parched earth itself standing beside us. We asked him all the normal things adults tend to ask children although I was only 20 and neither adult nor child. What’s your name? Everett. How old are you? 11. Andy asked him “are you related to anyone who is buried here in this graveyard?” Everett jerked his thumb towards the nearest grave: “see that one there?” The cross read “Everett M. Jealous III” – “that’s my dad,” he said. Andy stalked off, kicking at weeds. Everett and I shared silence and space, the way 2 eleven year olds might. The comfortable silence of just being in the hot sun together, rattling around, looking for what to do next.
Half a dozen men on Honda Goldwing motorcycles with North Carolina plates pulled in, parked and began talking. Men aged 50 or 60 patted Everett on the head, told him he was a cute lil Indian feller, picked him up and sat him on their motorcycles, and took his photo. I retreated to the truck and waited.


They left as abruptly as they had arrived and Andy and I prepared to do the same. The key was in the ignition and my eyes were full of tears when Everett appeared at my window. He was shoving a poster in through the window, saying “here. I want you to have this.” He had not been holding it when we first saw him. It was clearly old, had been on somebody’s wall, was dog eared and yellowed. It was the image of the iconic painting The End of the Trail. The Lakota brave in the war bonnet sitting astride his pony, downcast, the pony’s head and tail are down, the warrior’s eyes are down. It is an image of defeat, but in this poster, there is a shadow of triumph. Behind the warrior, the his shadow is triumphant,, arms outstretched, sitting tall, pony’s mane and tail flying, ears pricked. It was beautiful. It was moving. I was blown away. I leapt out of the truck and dove into my duffel bag in the bed, pawing through all of my belongings, searching for something to give Everett in return. I came up with a t shirt I had purchased as a gift for friends back in New York – a shirt I bought in Seattle, white with black splotches on it. “Here.” I handed it to him and added “it’s cow moo flage.” And for the first time since I met him, Everett smiled. I went to get back in the truck but hesitated and asked “may I take your photo?” he said yes and he climbed up onto the archway at the entrance to Wounded Knee and he sat down and he looked away. I shot one frame and left. I did not stop crying for hours.

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Impermanence

When Bindi and I walked up to get the mail, we flushed a doe bedded down behind the snowplow turnaround. The doe popped up like a jack-in-the-box, from lying down to airborne in one graceful leap. Bindi and I halted in stunned silence before I managed to squeak “oh my goodness!” The doe bounded away while we stood there gawking.
It was just a moment, but it was a damn good one. Moments like these adorn my days when I am lucky, and my weeks or months when I am less fortunate. I seek them out, stalk them, whether that’s a fool’s errand or not. I celebrate them, memorialize them, and catalog them. But what I seem to be unable to do is accept them as complete, just as they are.
I’m always looking for the theme, the overarching meaning, the symbolic connections that weave the moments into a whole. I want the story, beginning, middle and end. I hunt for the moments themselves but with what feels like ever increasing fervor, I also seek to string them together to craft a narrative that says something meaningful, something total about this life.
While hiking with the dogs, I watched a toad hopping around and thought what an absurd method of ambulation. Evolutionarily speaking, what could possibly have been the point? A better nature writer than me would go on to describe the evolution of hopping with just enough scientific accuracy to be both fascinating and elucidating and just enough lyricism to be poetic and satisfying. I am not that writer. Some days I’m not sure I’m a writer at all. I am an observer. I look and I see, and I report back to you. The toads hop and I challenge myself to describe it for you in a way that brings you here next to me, in the humid woods, where we squat shoulder to shoulder, swatting deer flies and marveling at how it sure looks like it’s the earth itself, the very rocks, that are trampoline-like, not the toad’s legs that have springs.
Eloise, the crab spider I had been photographing daily, has disappeared. Not knowing enough about the natural history of crab spiders, I am left to wonder if she has shuffled off this mortal coil, relocated somewhere more private and sheltered to raise her young, or perhaps simply found another flower with better prey traffic. A true nature writer would research this, and would share their learnings with you, dear readers, to provide the comfort of knowledge. Of closure. The story of Eloise, beginning, middle, and end.
The open-endedness and the impermanence of attachments: we were taken with Eloise. We came to know her; we came to expect her there each morning, photogenically waving a couple of dew-covered limbs. We became attached. We came to love her and then one day, inexplicably, she is gone. So much of what we hold is not ours to keep.
I cannot assuage your grief at her loss with answers. Nor my own. I am not that sort of nature writer. I am not that sort of person. There was a time when I thought I was, when I thought I had become proficient, experienced, knowledgeable, competent. Cinder’s death removed the first jenga block, and the structure became precarious. Some days I feel like the pile of blocks that once comprised my identity continues to be pillaged. I don’t know how to stem that tide, how to communicate to the forces that continue to take away block after block – enough already. I’m down. I’m out.
On these long summer days flanking the solstice, I get out early, but I still feel like I’ve missed it. By the time my camera and I hit the driveway at 6 a.m., it may as well be noon. Lessons of impermanence unfold as the dew evaporates. It’s already light out and the animals I seek, the stealthy nocturnal predators, are long gone. Tracks in the mud, scat carefully placed upon a rock, and blurred images on the trail cameras are all that remains from their evening’s activities, and I – out just after dawn – am too late.
I don’t want to miss a thing. Not this year’s pinxster bloom, not this a single litter of coyote pups. My FOMO is firmly anchored in nature. Where are this year’s columbine flowers? Why didn’t I see them on that rock outcropping where I have seen them in year’s past? How could I have missed them? How is it the feelings of regret and angst that a year has gone by in which I didn’t visit the mountain laurels in bloom, I didn’t search for wild orchids or participate in the Bicknell’s thrush census, how is it that that causes me pain, but missing the visits to my mother or my daughter does not?
The roller coaster ride of impermanence: There is no triumphant hands-in-the-air, screaming-with-delight-at-facing-our-mortality, flying, falling, final plunge. We can only lean into the ride with reckless abandon when we know that the end will come, the seatbelts will release, and we will walk away unscathed, ready for the next adventure. But to be stuck on the coaster, in freefall, unable to look away from the impending Niagara we are about to go over in our shoddy barrel, without ever finding the bottom… no end, no closure. This is the reality of impermanence. Yes yes, we could all could be hit by a bus at any moment. Our embodied existence could be snapped like a twig underfoot at any age, for any reason, on any given day. Yes yes, we all know this at some level, but we defend against it in whatever way we can, whatever way works for us. We don’t look at it. We adopt five dogs. We get married. We make plans.
To feel those defenses breached and to live unguarded from impermanence is both awful and wonderful. Exhausting, draining, yet never more alive. Each moment brimming with peak experiences: love, beauty, wonder, awe, contentment, and yes, pain. How long can I keep this up? Is it possible to live with this much aching awareness? Is there a book I can read that addresses this issue? Is there a doctor I can see, a therapist, a shaman that offers answers?
Melissa said, “there is only now.” When I first read Alan Watts’ The Wisdom of Insecurity, back in my teens, I didn’t get it. I felt vague resentment at the promising title but deeply dissatisfying message. I felt unheard, dismissed, my banshee emotions ignored. Fast forward forty years and I have come full circle: there is only now, and I live it like a lump in my throat. Like the suspended inhale at the moment of realization that that black shape ahead is indeed a bear. Before I reach for my camera, before I exhale and think sensible thoughts, before coaching myself to hold my breath as I depress the shutter to minimize lens shake… that moment of pure awareness in which the I that observes ceases to exist and there is only a body doing body things: a heart racing and vision searching to put words to shapes. There is only now.
I had a dream last night that I was in a relationship with a young woman. The sex was both soulful and explosive. But afterwards she broke up with me. I felt nothing but compassion, for her, for myself. No grasping. No clinging. No anger. No fear. Just love. I loved her so much I let go. I broke wide open and love was all that poured out. I loved her enough to not need to possess her. I loved her enough, period. It was the only time in my life I have experienced love like that. I woke up saying yes to loving that hard and deeply, that brutal searing openness. If my dream self can accept impermanence with grace and dignity, that acceptance must live somewhere inside me. But accessing it with my waking consciousness… that’s the trick I have not yet mastered.
I strain to find the ends of the disparate threads. Impermanence, identity, meaning. Karen, in her incisive way, offered “maybe YOU are the thread.”
And so the journey begins, to untangle, spool up, and knit this thread into something I can wear.

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While out walking

I have to figure out who I am. It’s an odd assignment, given that I’ve been me for 56 years, but of late I have lost the thread of who that is. In place of identity, I find tasks. I complete the tasks. There are more tasks. It’s an existence, and not a bad one. The tasks are easy, or they are difficult. It doesn’t matter. I do them: load the dishwasher. Strip the bed. Fold and put away another load of laundry. Scrub the porcelain in the bathroom, wipe down the kitchen counter. Sweep the floor.
The doing has taken over the being. Practice yoga, go for a run, stalk wildflowers and coyotes. Be creative. Read a novel. It all feels rote. Take care of myself, take care of this house, take care of the dogs. Make human dinner, make dog dinner. I have lost myself in all the tasks.
My husband has cancer. I was raised in the generation that saw cancer as a finality – it was how people died. While intellectually I know this is no longer the same truth it was in the early 1970s, I cannot shake the sentence from the word.
My father died in 1971. I was five years old, and was told “daddy died of cancer of the liver.” Later, as I grew more sophisticated in my questions, it was explained: Daddy had malignant melanoma. It was discovered in his eye. He had his eye removed but it was too late. It had already spread to his liver. My childhood understanding of anatomy grasped only in the most fantastical way how the eye bone could be connected to the liver bone.
A few months later, my mother had forgotten about our yearly school physicals. My sister and I were seen by the school physician. Was it a note sent home or a phone call? Suspicious mole on back, at belt. I was bundled into the car and taken to a dermatologist within days, the round black velvet birthmark unceremoniously cut off with what looked to me like a pair of scissors. I remember clamping my jaws shut and holding still, not understanding.
Cancer. Margins. Chemotherapy. Radiation. We hear the words. We listen to the explanations. We ask questions. We think we know what to expect, but I admit that no explanations or descriptions could prepare me for the waves of compassion and revulsion I feel. Anal leakage. My husband is held together by immodium and prescription suppositories. His skin has taken on a grayish cast. He sleeps deeply during several extended naps during the day, and is up at night visiting the bathroom repeatedly. I do the laundry, his soiled clothing and bedding handled as the nurse instructed, separately, like toxic waste. I bought bright pink heavy duty rubber gloves for cleaning. Peony pink. Happy pink.
I am somewhat obsessed with cleaning. When I stop doing, in those interstitial moments, to take a sip of water or check my phone, the thought that percolates up to the surface again and again is “clean something.” Take a shelf out of the fridge, or a box from the yellow house. Go through your sweater drawer again. Clean, sort, jettison. The house looks no cleaner for all of my efforts, testimony to the recalcitrance of dirt and dog hair. But I keep at it, sweeping, wiping, scrubbing. These actions are prayers, they are meditations.
Walk. I am good at walking. I walk often and far, camera in hand. I look and I see things – tiny things and big things. A red eft dragging an earthworm, far too big for it to consume. A broad winged hawk that I heard before I saw it, its thin single-note cries jerking my eyes up to scan for the source. A mating ball of garter snakes, striped and checkered, all heads and tails in a writhing mass. The bicycle bell trills of the cedar waxwings, as they devour what’s left of the elderberries and sumac. The occasional porcupine sleeping in the crotch of a maple; the startling crash of a bear in the underbrush. The life cycle of the bees, played out in noisy drama as they swarm, mate, and settle into the business of being a hive. My husband was the beekeeper, the one who built the hive boxes and dons the suit to perform “hive manipulations.” He hasn’t walked down to the hive in a dog’s age. I am his eyes and ears.
Sometimes the camera strap catches a nipple. Raw desire, disconnected from a person, a partner, a love: just a reflex. I smile at the indication that I am alive – that there is something in me that still feels the quickening of pulse. I remember the lines from Mark Sanders’ poem “Raccoon” – Cattails rush like blood/A throbbing of blackbirds. The camera strap or the sun’s warmth or the breeze lifting my hair to caress my neck. I show up for all of it.
The weeds in the back yard tower over my head. A leopard frog dives across my path, clumsily, limbs everywhere, as I stride uphill, heading for the woods again. What if this is all there is? What if identity collapses under the weight of cancer and questions and desire? What if walking and looking and seeing and doing the tasks – what if that really is all there is?
I used to be more certain, more clear. I was a psychotherapist, I was a single mom, I was in love, I was forsaken. I was a hiker, that woman who hiked them all wearing a ballgown. I was a farm hand, a bent-backed, overall-clad worker bee, with mud in every orifice. I was a dog rescuer, crazy dog lady, dog expert. Now I am none of the above.
What if I’m asking the wrong question? What if “who am I” no longer matters? What if the stories I tell myself about who I have been matter more than who I am now?
Maybe when a life is summed up, what we did, the tasks we accomplished, the magics we witnessed, and the stories we told are what mean the most. Maybe what’s important is the paying attention, and the showing up.

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Moss

It started slowly, just a speck of brownish-green she hooked under her fingernail and lifted from her
hairline. Barely of note, it looked so much like all the other remnants of the morning walk — bits of this
and that she would find in her hair and pockets. But this was different. It was almost as if it had grown
there, emerged from her very skin itself.
She flicked it away.
When the next few spots emerged, she was perplexed. Could mildew be growing on my scalp? The four
dogs, her companions on the daily forays into the woods, responded as they responded to everything:
the eldest begged to play fetch with his ever-present stick. The middle two flopped to the earth, tongues
lolling. The pup muzzle-punched all of them, the woman included, and raced off to snatch at a fly.
The mildew hypothesis, while unappealing, was not unlikely. Fungus grew and rotted, and the entirety
of the woods smelled like wet lint and composting onions that sweaty August. The whole month felt like
one interminable hot flash in a stifling, windowless room.
More spots erupted and grew.
They tried walking earlier to escape the suffocating humidity but she found that they lingered, the
chipmunk chases taking longer and longer, until the journeys ended at about the same time regardless
of their start. They tried aiming for water, the brook or the pond, but the biting flies drove them off into
the woods, ever more deeply away and up, towards the windy high spots where they could catch a
breath.
August and then September lingered, languid, feline, drowsy and napping. And the next August and
September, and the next.
The eldest left first, taking his place by the old rock wall. The woman selected outstanding stick
specimens to leave for him at his headstone, offerings and memories entwined. The middle two,
littermates, gave up the morning walks. Then they gave up eating and took their place beside him. Safe
from the woman’s ministrations and admonitions, they slept more peacefully than ever before.
She considered calling the doctor. What would she say? She knew those medications all too well, and
was confident they would not help her. She vowed to drink more water and ignore the patches of
velvety green, now carpeting her back.
They continued to walk, the woman and the pup. The walks stretched out beyond morning. The
woman’s pace slowed, her condition ever greener, browner, deeper. She found herself “taking breaks”
to listen to the earth’s heartbeat, buried in damp leaf litter. The pup would fly at her, deliver a stiff poke
to the ribs, and race away. The woods echoed with their laughter.
And then she forgot to wear her boots. Looking down, without her glasses on, she couldn’t see where
her feet ended and the earth began. The way home seemed to take longer and longer. She responded
by no longer attempting to return home, walking into the night.
She didn’t choose to stop so much as she stopped resisting, stopped fighting gravity’s pull. She settled,
as inevitably as an exhale. The moss found the earth, and she was home. The pup bounded in one last
time, for one last play bow and wag, then flew off.

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Swimming Lessons

I paddle out,
Perched precariously on a thin sliver of wood. Dry land. Paddling out upon
This ocean of mine, deep and choppy,
I’m trying to stay dry.
I believe the lie I’ve told myself all these years,
That I can stay above the swirling sea, that I can ride the waves without getting wet.
*
I’m going to get wet.
The thin sliver of land I perched so precariously upon is going to be
Spit into the air like a watermelon seed,
And I’m going to fall in.
Thrashing, spluttering, panic-stricken gasping
For breath, not knowing which way is up, which way is for lungs
And which way is for gills.
It won’t look pretty.
*
There will be kicking and screaming, fighting
The rip tide that won’t stop threatening to drag me away to unknown depths.
I will beat the current, fighting the sea itself. I’ll be angry, resentful, and cling to the struggle.
And then I will remember.
A voice from somewhere deep inside me, a voice that might not be from inside me at all, a voice from somewhere ancient and amphibious and sage will spark
A remembering.
And I will surrender. I will
Let go. And I will float.
And then, when the current releases me,
I will swim to shore.

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The Joy of Failing

Shoop.

Shoop.

Eight inches of spring snow always softens and compacts into 3 inches of “rotten” snow by the next day. The sound of my boots scraping against this snowcone-textured slush is a sweet “shoop shoop.” In shady spots where the snow is deeper and firmer, it creaks under my boots. But out in the rapidly melting sunny areas, I hear the rhythmic shoop shoop and find myself singing along in my head.

I have been coming out every afternoon for weeks, tracking the coyotes. Some days the tracks are fresh and I am cautiously hopeful that I may actually find a den site. That’s my goal. I had a sense of where coyotes might prefer to den, so hit all those areas first. No luck. I followed tracks into the steepest and most remote areas, the wildest rocky ledges I knew of. If I were a coyote, I reasoned, I’d select a den site far from annoying humans and pet dogs. I’d choose ledges with good cover, and overhangs that open on the downhill side so that melting snow or rain doesn’t run into the hollow. But I saw no signs of coyotes in all the areas I scoured.

I was out in February, perhaps a bit early for denning. I searched for areas well-trodden game trails, icy and flattened with the heavy traffic of many comings and goings. I searched for the detritus of meals eaten near den sites – bones, fur, skin, feathers. No luck. I followed tracks for miles, from my backyard to the farthest reaches of the 2000 acre parcel behind me. No luck.

Today I tracked what I parsed out to be three adult coyotes. The tracks were not recent. I started right on my property, not far from the house, and followed for close to two miles, venturing into an area I’d never explored before. The tracks unbraided and each led to a bare spot in the earth, a coyote sized circle where one of the three had curled up and slept.

I wasn’t successful. I wasn’t making any headway towards my goal of photographing a coyote. Once again, I wasn’t finding what I was looking for.

I took a deep breath and let it be good. Or at least good enough. I chose to enjoy what I was finding – the shoop shoop, the surprise vista I stumbled upon, the discovery of the coyotes’ beds. I was sure I had been tracking three coyotes, so finding three bedding sites in close proximity made me feel that swell of pride. I am unsuccessful but I’m not completely useless at this. I lingered for a few moments listening to chickadees and nuthatches, then continued on, no longer following the coyote tracks. They slept there, out in the open. No den.

I climbed up towards the summit, deciding to go check on a porcupine over by the blackberry patch. Sure enough, Briar (named for her location) was out foraging, despite it being midafternoon. I battled the deeper snow, man-eating blackberry canes, and buried fallen branches to get a few crummy photos of her.

In a way, being unsuccessful has been fun. It’s been fun to commit to something and keep banging away at it, without any hint of success. It’s fun to do something… a lot of something… and be lousy at it. It’s been freeing and light to just keep slogging away, mile after mile, day after day, without success. It’s been delightfully humbling and I’ve been enjoying laughing at my effort. I’ve also been enjoying the commitment itself. As I said to a friend, the real project is to commit to trying. It’s a lot easier to talk myself out of it, believe I can’t, and then give up. Trying involves discomfort and risking failure. Hell, I’ve been embracing and reveling failure.

I may be a day and a half behind the coyotes. I may not ever catch a glimpse of a wild coyote out here while I’m looking for one. But I’m not hopeless. As much as I’ve felt hopeless over the last two years, I’m not hopeless anymore. The creak creak and the shoop shoop and the three dug up beds in the snow are triumphs.

Surprise vista
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The Patient Role

Every so often a meme makes the rounds, with the following text: New approach to self care: talk to myself the same way I talk to dogs. “Hey sweet girl!” “Look at your beautiful belly.” “You’re so clever.” “Want a treat?”

The meme sparked a memory: Last summer, I was at the Digestive Diseases lab, awaiting another endoscopy. Or perhaps I was in recovery, having just had the procedure. Honestly, I forget which. The doctor came in to talk to me, and asked to examine me. She is older than me, and profoundly experienced and knowledgeable. She is also quite terse at times, and can be imperious, qualities hard-earned as a woman doctor with her extensive resume. She asked to palpate my belly, but she did so with the words “may I examine your sweet little belly?”

I was tickled by her choice of words and I’m sure, despite wearing a mask, that my face showed it. I’m a 55 year old woman, and my belly does not warrant such terms of endearment. Yet there we both were, her offering and me receiving the intimacy of unbidden adjectives. She smiled at me and said something else about the quality of my belly – I don’t remember if she repeated the word sweet, or used some other diminutive term. Cute, perhaps, or tiny. And then the moment passed and away she went, bedclothes up and hands to the abs.

It was a dropping of the veil of professionalism and distance, and it was, if nothing else, deeply human. It was maternal, kind, and tender, as was her exam. I’ve been poked a lot. Her hands were as tender as they were competent.

Being in the patient role is only one small fraction of my life, but when I go to the doctor, it’s all they see. The rest of me, the writer, the dog wrangler, the wife, the mother, the photographer, the hiker, the former social worker, all take a back seat to the patient. For people like me with chronic illnesses and enough medical appointments to earn serious frequent flyer miles, it gets intimate. One of my doctors knows the song of my heartbeat, the whisper of my breath in the deepest recesses of my lungs. He has held my hand, and heard me sob. He knows the sound and feel of my belly. He has unbuttoned my jeans. And due to covid, I have never seen his face.

The lack of reciprocity is endemic to the doctor-patient relationship. I chuckle at the thought of asking him if I might take the stethoscope and listen to his heart, just once, just to even things up a bit. It’s ridiculous. But I go there in my imagination, wondering what the response would be, and imagining my wonder and joy at the purity of hearing another human being’s heart.

My past life as a psychotherapist provides a relatable framework. The professionals hold the boundaries. The boundaries keep us all safe. But those moments when the veil drops and the humanness is laid bare in a word or phrase, a gesture or a touch… the “sweet little belly” moments stand out. It’s in those moments that I feel seen and held, and I believe it’s in those moments that healing occurs. Maybe not physical healing, not medical healing. But something deeper happens. The connection itself heals the isolation that the illness created.

The patient role is, in and of itself, a stressor. There are times when it’s just one more rock in my backpack, and I lose interest or motivation to play the role well. Sometimes I get so tired of being in the patient role I downplay the frequency or severity of a symptom. I just can’t stomach another round of questions and tests, procedures, treatment plans, and medications. Hopes and fears. Sometimes I just plain need a break from being in the patient role, damn the consequences.

I get angry with this body for repeatedly shoving me back into the patient role, for having shitty shoulders and hot flashes from the bowels of hell. For having achalasia. For letting me down.

But then, I remember that this body has taken me to the summits of the Catskill 35 countless times. This body has stayed aboard a horse leaping through the snow up to its belly, on the route to Aru in Kashmir. This body also stayed on the sure-footed horse that picked its way along a narrow trail in a coffee plantation in Nicaragua. This body has been submerged in the Atlantic, tossed by waves in the Pacific, and marveled at the striped and jointed fins of fishes in the Indian Ocean. This body did not want to leave the loving embrace of the Georgian Bay and was unceremoniously spit out by the Arabian Sea.

The body grew, birthed, and fed another human being.

This body has danced like no one was watching when people absolutely were watching, and forgot the words while onstage, performing an acapella song. This body has loved and lost, hoped and feared, faced life and touched death.

So yeah, a few parts are wearing out. Being the proud owner of a chronic illness means I will likely need regular reprises of the patient role. I’ll need to be ok with being vulnerable, embrace the non-reciprocal intimacy, and enjoy the healing connection I have forged with tender and competent hands, minds, and souls.

So begins the next chapter. Bring it. I’m ready.

Photo by Stefan Lisowski

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50 Rose Plants

“Can you read me the Latin name?”

“I’ll spell it out, ok? I don’t know how to say it.” She was sweet to accommodate my pretentious-sounding request, but the price list only indicated common names and since I was buying 50 plants, I needed to be sure I was getting the ones I wanted.

“R-O-S-A… oh, Rosa.” She chuckled a little at her hesitation. “V-I-R-G-I-“

I stopped her, having heard enough. “I’ll take one of each.” One, in the world of the New York State Department of Environmental Conservation plant sale, equals 25. I committed to buying 50 rose plants this spring.

***

In the three weeks since I had POEM surgery, I’ve had no achalasia symptoms at all. I also have virtually no symptoms of acid reflux, the most common post-procedure complication. I’ve been able to reduce my anti-reflux medications and if all looks good at my next checkup, I will be able to titrate off them entirely.

Yippee! Hallelujah! I must be elated. I must be thrilled. And I am… sort of.

Back in early 2020, when I got mugged by achalasia, I was disappointed in myself. Battling normal menopausal challenges, from hot flashes and belly fat to brain fog and a restless dissatisfaction with myself, I was on board the struggle train and riding it to the last stop. My book wasn’t a best seller. My wildlife photos weren’t garnering calls from National Geographic. I was gaining weight, losing hair, and generally feeling like a flop at life.

But achalasia was waiting for me in a dark alley. Suddenly, I didn’t care that much about being vertically challenged, having a meno-belly, or how many copies of my book sold. I just had to survive, to figure out what was wrong, and get help. It was my quest. It was my full-time job.

Full blown achalasia was a protracted crisis. Month after month, just getting through each day was all I could manage. I back burnered pretty much everything else, including coming to terms with Cinder’s death. To have that trauma lie there untended, stuck in my throat, so to speak, and then to have the crisis erupt between Peeka and Willa, and then after believing that I’d made the deal with the devil and sacrificed my beloved Peeks… to once more have to relinquish a family member… it was all just set aside. I couldn’t acknowledge what I experienced. For those 22 months, I did what was right in front of me and nothing else. I lost my identity as a healthy person. Alongside this loss, I lost my identity as a competent dog owner. I felt like a fraud, an imposter. The Mica-Iske-Lily days were long gone and in their stead, failure. Loss. Guilt. And of course, shame.

To have the quest come to a screeching halt was unsettling. After surgery I could swallow, sure, but I also felt utterly lost and empty. The quest had defined me and its end was abrupt. For a blessedly brief period of time immediately after coming home from the hospital, I was nothing but a walking compendium of symptoms and medications – a schedule of doses and food rules and a finger on my pulse at all times. I felt tenuous and overwhelmed.

But I’m getting my feet back under me. In addition to the roses, I’m buying seeds for next year’s garden – literally and figuratively. It’s nice to feel like me again – new me, but with plenty of old me in there too. For the first time in a very long time I feel like I’m going to be ok.

Now I’m post surgery and recovered. Huzzah! The grail is mine! I can swallow. I can eat. And I can sleep. With the return of these functions comes a new-old space in my brain – the space to be self-critical. The space to face myself squarely, hands on hips, eyes narrowed, and say “Get on with it. Clean up this mess.”

All that baggage I carried in with me… all the stress and worry and effort and hope and sadness and anger of life with Peeka and Cinder and Hawkitt and Willa and Brody is there, right where I left it, stacked in my hallway, where I trip over it every time I try to go anywhere or do anything. The facts of the matter, the details for each situation, each incident, and each concomitant loss are there, stacked up, waiting to be unpacked and put away. Each bag needs to be emptied, and each item assessed. Put away? Wash? Throw in the trash?

I like the digestion metaphor better. Each incident needs to be received, taken in, consumed. Bathed in acid and enzymes, agitated thoroughly, broken down into its molecular components, rendered small enough and elemental enough to be taken in and assessed. I need to accept as nourishment, rather than reject as trauma, the “good” parts, because even harrowing events can contain kernels of usefulness. I cannot grow as a dog owner if I cannot feel what I’ve been through. I have to take it in. As shit-filled as it is, I need to sift through it. All of it. Thoroughly. I need to believe in the possibility that it can feed me, that mixed in with all the guilt and shame I will find nourishment.

Food and shit. Determining which is which takes time and a process that is deep, intricate, and not necessarily conscious, but, I have come to believe, completely necessary. The task that lies before me is to determine what’s food and what’s shit.

I’ve embarked upon a home study course: Anatomy and Physiology of Shame. I stumble into the lectures as I walk the dogs each morning, meditate on the teachings as I prepare dinner each evening. I’m cultivating intimacy with shame. I’m letting the memories visit, looking at the photos, rewatching the old videos. I’m feeling what it does to my body when I take that breath and feel… really feel… the shame and sadness and regret that lurches unpleasantly in my belly at the memory of losing Cinder. This is the work, and I’m doing it.

Therapists and talk show hosts use the phrase “come to terms with” the experience. I hate that hackneyed phrase, but I accept that at some point, a reckoning must happen. We all experience trauma and loss, and we all find ways to move forward. Ultimately, we accept what has happened, what we have done or failed to do, and what the result has been. Swallow, digest, absorb, excrete. It takes time, requires patience, and a certain kindness towards oneself, to simply let this unfold in its own time. I’m not known for my kindness, even less so for my patience.

My goal is to be able to look at a photo of Cinder, or Peeka, or Willa, without that sickening pang of shame. I want to enjoy the memories, and to forgive myself. I want to accept what happened, not just in words, not just rationally, and intellectually, but in my body. I want to accept with my gut and blood and stomach acid. I want to forgive myself with my heart. It’s a long way off, but I believe it’s a process that can happen.

There were thrills a minute when I had Peeka. Pretty much, that sums it up: when I had Peeka, when Hawkitt was younger, when I had five dogs, when I had a malinois puppy. I’m not addicted to drama; I’m not craving a return to that way of experiencing life. But I am certainly aware of its absence. A year ago, I spoke the words out loud: “This is unsustainable. I need my life to be easier.” That longing has come to fruition, and it is eerily quiet. There is space: quiet, peaceful, empty space. I struggle to understand to what degree I need to fill that space, and with what.

I think 50 rose plants is a good start.

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Braids

“There is such tenderness in braiding the hair of someone you love. Kindness and something more flow between the braider and the braided, the two connected by the cords of the plait.” Robin Wall Kimmerer, Braiding Sweetgrass

“May I braid your hair?”

There were several nurses around me making final preparations, checking my IV line and securing my plastic bag full of Personal Items under the gurney. I was moments away from being wheeled into the OR. Moments away from receiving general anesthesia and – with any luck at all – a fully mobile shoulder joint. The woman at my side asked me if she could braid my hair.

I struggled to read her face without my glasses. “Of course,” I mumbled. “Thank you.”

Surgery is a fascinating adventure for the layperson to contemplate. I believe there is a certain courage in the surgeon to go against a deep and primal taboo – the sanctity of the envelope of the human body. To cut into it, to open it up, or as in The Knight’s Tale “to make your entrails your extrails” is ballsy as fuck.

In those last moments right before the nurse anesthetist puts your lights out, there you are, naked, and utterly vulnerable. And backing up from that only two minutes or so, a woman I’d never met asked me if she could braid my hair.

My hair is long, gray, and unruly. I think I had attempted a ponytail in my vain effort to control and render tidy the mop I proudly describe as looking rather like a Scottish Deerhound. The nurse explained “I think it might be in the way as the surgeon works on your shoulder.” Makes sense. My hair is often in the way.

My hair has a backstory. I was born with normal baby hair – black and wavy. It all fell out and I was bald for quite a while. When my hair finally grew in, it was strawberry blond, and hung in ringlets. As I got older, my hair got darker, straighter, and thicker. At age 10, I had flower child, waist-length, plain Jane brown hair.

Super thick and dead straight, I was the queen of poodle perms for most of my teen years. Then I shaved my head because Art College. It grew back and I got busy with life and left my hair alone for a few decades. Then I started going gray.

It was at a friend’s wedding that her mother leaned over to me and stage whispered “you’d look ten years younger if you dyed your hair.” I was about 35. Welcome to a decade of stained towels and bad “wash in wash out” shades of cinnamon and cloves. In my forties I waved the white flag. No more dye, no more haircuts, no more perms, no more battling to make my hair conform to some societal notion of what a professional woman and mother should look like. I might add that it was in this era that my mom remarked “you look like a haystack with a nose poking out of it.”

At 55, I have salt and pepper locks that tumble down my back and breast in a most untidy manner. 99% of the time I just could not muster up even a microgram of caring. Whenever Tom wants to get an easy laugh, he insults my hair. It’s become our darling whipping boy. Even my daughters, step and bio, have gotten in on the teasing and hair jokes. It’s an easy target, low hanging fruit.

Fast forward to 2020. While I evaded Covid, the pandemic held special charms for me. I had a frozen shoulder that stubbornly refused to thaw. And my ability to swallow shit the bed.

Achalasia. How rare is achalasia? Well, let’s put it this way: you’re 10,000 times more likely to die in an auto accident than be diagnosed with achalasia. But sure enough, I’m the one. Reaching a diagnosis took a number of steps, and most of those involved sticking a probe or camera or sensor into my esophagus.

I started showing up with purple hair to have these test done. I’m not sure why. The first time was unintentional, but the doctor complimented me. Baaahahahaha. That was all the encouragement I needed. Purple. Teal. Green. Silver mixed with purple, aiming for pewter. Every procedure earned a new shade. I felt like the staff at all these hospitals and treatment facilities deserved a chuckle. Covid was sucking all the joy out of health care the way terrorism had sucked all the joy out of travel. The weird old lady with the incredibly rare disease also dyes her hair purple… let’s face it, even if they don’t laugh, it’s memorable. It’s stands out and that helps make the work day go by. Pandemic times, and I’ve become a frequent flyer at the local hospital. Feels like the least I can do is be entertaining.

So after failing physical therapy, and a failed cortisone injection, I dragged my frozen shoulder and my paralyzed esophagus off to the hospital one more time, to have that shoulder freed up surgically. If I can’t swallow, I reasoned, I want to be able to use both arms. It made sense in my head.

No one has braided my hair for me since high school. Jen and I used to practice French braids in art class… until we had a falling out. I don’t know exactly what happened, but one day Jen hated me. And then if she did a poor job braining some other girl’s hair, she would tie off the end with a hair tie and the quip “if anyone says anything, just tell them Heather Rolland did your braid.”  

A stranger’s hands in my hair… a stranger’s hands inside my body. Surgery is profoundly intimate. So is hair braiding, albeit in a different way. The nurse stranger was older than me, her hands gentle and her movements deft. She didn’t pull or pinch. The anesthesiologist had come in to speak with me moments prior, and his first words were “I read your chart and I’m sorry you’re going through this.” I teared up at the candid acknowledgement. “I’ll take care of you,” he said. I was still reeling from this human moment, tucked into the bee hive busy-ness of surgical prep, when the stranger braided my hair.

I don’t remember her name although she did tell me. I don’t remember her face, because she was capped, gowned, and masked. But I remember her hands clearly, long-fingered and wrinkled, like my mom’s hands.

I placed myself in her hands and chose to trust.

This is a person with a chronic illness.

That was in September, 2021. It’s January 2022, and I’ve been back to the hospital a few more times. I’ve had more tests and another surgery. And I’m on the mend. It’s been a very long 22 months, but here I am, the proud owner of a gravitational swallow. I braid my own hair, now that I have two shoulders that move freely. And I’m grateful beyond measure to all the people who have been a part of this journey. There are many problems facing the American health care system today, but the kindness and compassion of the people with whom I’ve crossed paths is undisputable.

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Consolation Prizes

We all have been conditioned to equate thinness with goodness and fat with badness. Lazy, slovenly, no will power etc.
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I bring my own spin to this because eating is such a crazy adventure for me. For the past 19 months I’ve struggled valiantly to eat at all. One gift achalasia has given me is the total “fuck it” attitude when it comes to food. All I care about is if I can swallow it with a minimum of drama. Chocolate pudding for dinner? Sure. Cookies go down well so I’ll eat them. Every day. In any quantity.
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I had a crazy thought the other month, as I battled a belly that just seemed to defy caloric rationality and get bigger and bigger despite my ever more restricted intake: I had hoped achalasia would make me look better. When I realized I had lost weight, I was actually happy. (Side note – it wasn’t h til I reported weight loss that my doctors got interested in my situation. Prior to that, I had been told to eat more slowly… chew more thoroughly. Once weight loss entered the symptom list, tests were ordered and attitudes changed.)

I thought there was a silver lining, and that a flat stomach was it. I have an incurable chronic illness but hey, I get a flat belly as a consolation prize. I was stoked.
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No such luck. Menopause or some other process has meant my body is rearranged. Yes, I’m thin in some places, but I’m expanding in others. That’s reality. I can be angry, sad, feel betrayed, disappointed, or anything else. What I can’t do is have a flat belly. I have bigger fish to fry.
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My illness has given me the gift of throwing out all the rules. I drink seltzer at breakfast, eat whatever the fuck I want and answer to no one. Maybe after surgery, when I can swallow again, I might be less feral. But I doubt it.

This post was inspired by an article published on the Scary Mommy website: Please STFU About Your Diet. The article is great; the site has tons of advertisements and pop ups.

This is me. This is a person with a chronic illness. I look fine. Healthy even.

Making peace with who we are, what we look like, and how we feel is a tall order. I’m a short person. But I’m trying, some days a whole lot harder than others, to do my best to just shut off any voices in my head that tell me I should. I reject any should at all in any arena. I’m doing my best to live “shouldlessly.” Shouldfree. Unshoulded. Fuck shoulds.

When a discrepancy between a healthy attitude and a healthy food choice comes up, I plan to choose the healthy attitude from now on. Because mental health requires it. Achalasia is like a crucible in which all my shoulds got immolated. I’m unashamed.

The truth is, you don’t need to get sick to get well. I hope you can take some morsel of this for yourself and join me in saying fuck it to shoulds. It’s liberating. And if you can’t, that’s cool too.

Happy holidays. Stay safe and be well. Hugs from the mountain.

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