I left because it was making me sick, the “it” being the job I had loved fiercely and believed I would give my heart and time to until I was well past retirement age. It was one of the hardest things I’ve ever done. It was one of the bravest. But my decision also meant I was parted from beloved land and people in and around Vermont who altogether were another home to me.
That was close to four years ago, and illness, cancer, and the pandemic being what they were, I didn’t have the chance to return to Goddard College, and more to the point, the places and people of my heart, until very recently. As soon as the plane touched down, I was surprise-flooded with ansty sorrow and sad urgency, something I would later realize was grief. It turns out that sometimes there’s only so much reconciliation and healing you can do from a distance. The first thing I had to do after we got our rental car was go to the campus with Ken, ferret out Jennifer, the woman who has holds together the college for the good over decades, and hug her a long time.
In 1996, I fell in love with the hills, mountains, woods, valleys, curves, and weather of the Green Mountains through the grounds of Goddard College. The smell of the air (pine, fir, humidity, and old wood) then, the mission of the college, the intense comradery of the faculty, and the life-changing work with the students filled me with a sense that I had found my place….at least for a good long while. I adored the intense, one-on-one teaching—more facilitation of what people wanted to learn and how they could best explore it—I did with students as well as the deep-dish connections with fellow faculty, talking late into the night about whatever made us laugh hardest.
The possibilities felt wide open, and it was there I developed Transformative Language Arts, founded and coordinated a MA in TLA for twenty years, and dug in to spin out out thousands of pages of proposals, plans, handouts, handbooks, and more for other projects, most of which crashed on the shores of we-fear-all-change in its many guises.
I persevered even when the signs billboarded sickness and anxiety, stuckness and despair. In my last decade or so of teaching there, the faculty in my program played a lot of go-on-leave-or-get-fired roulette because of the scarcity of resources and poverty mentality. We took pay cuts. Repeatedly. And we were getting paid way under value in the first place. Bad things happened, including the college, because of poor leadership and other issues, being put on probation. Infighting escalated. Then, for me, some big revelations.
First, I realized I needed to go on leave. Just a semester off, I told myself, after teaching continuously at Goddard or other institutions for 63 semesters straight with never a break. Once on leave, I decided to take off a second semester because I couldn’t make myself come back. Then the dreams started: night after night of seeing myself leaving my job. I’d wake up the next morning to tell myself I loved my job, but then I’d hear a voice in my head ask, “Do you?”
I didn’t anymore. I also had to reconcile myself with the immutable fact that after each ten-day or longer residency, I’d fly back to Kansas and promptly get sick for at least six weeks with chronic sinus issues, migraines, digestive hell. The body never lies, so they say, and this body rang clear as a bell. When I told close friends and my therapist I was thinking of quitting, they replied, “of course you are,” “it’s about time,” and “thank God.”
Since I left, most of my fellow faculty and the director of my program also departed. We’ve stayed in touch, speaking our leaving or needing-to-leave stories, the grief over what was no longer enduring, the dashed hopes and lost people along the way. Yet for me a searing bitterness lingered, blocking out all the good I experienced there, all the ways Goddard grew me up and blew open my understandings of places and people. I felt a sting when I ran into old photos of the place or picked up a cloth bag and found it had the college logo I once so proudly displayed. I had some reckoning to do.
When I returned to Vermont, it was also to wander with Jim across fields bordering Canada while watching ospreys in their nest. To laugh with Ruth over lunch in a quintessential Vermont charmer of a town. To make quinoa tabouli (so good!) with Suzanne we would eat outside surrounded by mountains beyond mountains. To meet the new goats at Sara and Joseph’s place in between hugging them repeatedly. To talk about our lives with Bobby. To connect with past students I’ve missed so much. To listen to so many others I carry with me in my heart from afar. It was a trip full of long hugs and overflowing delight in each other’s presence.
But there was also this place that carried me for so long. I returned to campus a second time, leaving Ken to nap in the car, and went to the woods. When I was last here in 2018, I left little love notes in the woods, tucking them between branches or under rocks, thanking this place and saying goodbye just in case I didn’t return. It was over six months before I would decide that, but some part of me knew. Now I faced the woods, sitting against a light post on the path between the dorms and the library with my journal open. I was ready to write more notes.
Instead, the wind, the tall trees, the slow-motion falling first autumn leaves, the occasional acorn dropping, the soft late afternoon light told me to take dictation. The place was writing back to me, but no wonder. We are in reciprocal relationships with the land and sky we listen and speak to over time.
“You never left us. We never left you. You never leave us. We never leave you.” This, in so many words, is what I heard and recorded. It chimed through me as truth, helping me see that this place was and still is a healing ground underneath it all (and there’s a lot of “it all”). It turns out I only left a job because it’s impossible to actually leave what’s embedded in you.
Since then, I’ve been thinking of a Mary TallMountain poem I love, “There Is No Word For Goodbye” (which you can see in its entirety here). She writes, “We just say, Tlaa. That means,/ See you./ We never leave each other./ When does your mouth/ say goodbye to your heart?” It doesn’t, and we never leave each other.
Yesterday my phone blew a microchip hissy fit and lost it ability to dial out or answer calls a few hours before the air-conditioning in the living room — a big-ass window unit that cools much of the house — died and shortly after a lightbulb in the dining room fixture exploded. It’s not just me: the a.c. in Ken’s car whimpered out, and when he was driving the big red 1950s tractor into the field to clear brush, some wires blew up so he had to stop in a hurry.
We are made of energy like everything living. I remember how, when one of my kids went through a bundle of years having seizures, he would later say to me, “I just have too much electricity in my brain.” We can turn electricity into energy, and obviously, the reverse is also true.
For the last month, I’ve been tunnelling through a this-is-your-life excursion to put together my papers for an archive being set up on my life and work at Pittsburg State University. There’s nothing like reading decades of old letters and journals to turn up the energy running through a human psyche. “So it’s no wonder you’re short-circuiting things around you,” my therapist told me.
But what’s exploded or broken or otherwise put out of commission must, especially in the case of an air-conditioner on a 101 degree day in Kansas, be fixed and fixed quick. This visceral reality came home to me as I sat on my living room couch with sweat running down my face. I couldn’t drive to the store easily in the heat (all I had was Ken’s no-a.c. car) to buy a new a.c. because Ken had my much-cooler-cooling car for his work driving some hours west and east for work. I couldn’t call for a ride because my phone and I were awaiting a new SIM card. But I could text, and so I asked Karen, my sister-in-law, to take me to Menard’s, and then we both asked our friend Stephen to help us haul and install a 66-pound new a.c. It turned out Stephen is a whiz at this, and Karen’s also great at making sure we seal and set the a.c. just right. Within two hours, the new loud machine was plugged in and diminishing the tropic conditions in the living room.
Meanwhile, there’s light bulb to replace, a phone to fix, a car repair shop to visit, and a tractor to rewire (at the kitchen table late last night, Ken made all the new wiring to add). Luckily, we have enough electricity around and within us to get this done while journeying through another crazy-hot day abuzz with the electrical hum of a million cicadas in the energetic breeze.
For last month, I’ve been on an archeological colonoscopy into my past as I sorted through boxes and big plastic vats of papers and keepsakes. I was spurred into motion after Pittsburg State University enthusiastically agreed to house my papers, creating an archive of my writing and life, that at the least will serve as an auxiliary basement for a bunch of my stuff 136 miles south of here. But there’s an unexpected boon to dealing my past into many piles of paper: I discovered the riches I reaped through the letters I wrote and received.
I ran with a letter-writing pack, back when long-distance calls were astronomically expensive and long before emails and texts. Being a writer who connected with other people who loved to write, and even more so, loved to read, I found astonishingly in-depth correspondence with dear friends still central in life as well as ones I lost track of, and somewhat disturbing, some I can’t remember at all. Who were Dave and Ginny in Chicago, for example? What happened to beloved friends Margaret (last spotted in Arizona) and Carolyn 9last known address in New Mexico — it seems quite a few pals vanished into the Southwest)? 2hat was the last name of Steve, an old flame turned friend who wrote funny, wise, and sometimes fierce letters calling me on my shit (“Caryn, you shouldn’t be sleeping with you boss!”)?
The letters themselves are hardly ever short notes, often going on for three or four pages, front and back, sometimes much longer. There were beautifully penned letters from my sister-in-law Linda about adventures in Winnipeg and my pal Kathy about traveling the world as a journalist, piles of international missives in thin blue envelopes from my sister-in-law Karen from when she was in Kenya for three years building houses with Habitat. Some of the more local letters told me, “I’m sorry I didn’t listen to you when you were crying and freaking out the other day — I was just worn out” (oh, I was so dramatic in my 20s!) and “You helped me get in touch with my anger by borrowing my car without my permission and getting so many parking tickets” (I was so inconsiderate at times too). I was especially moved by a short note from Holly, a friend who died decades ago, written before her cancer, about how she loved me, and since we never know what’s coming in life, she was telling me now.
There were ten-page extravaganzas from old sweethearts or new colleagues-turned-friends-and-collaborators as well as heartfelt notes (with lots of hearts) from my sisters Jennifer and Lauren when they were kids. I found lovely cards full of words, often three times underlined, from my step-sister Wanda and typed slice-of-life intrigues from my mom. I even discovered a long letter I wrote to my dad about the failing state of the world in 1981 and how we needed to transform our political system, which he returned with a note on the bottom that said, “Your way will never work. I hope you find yourself.”
Mostly though the letters unfolded deep grappling with how to haul around the overpacked luggage of our emotions or the empty cupboards of our self-esteem. I was moved by the tender and raw honesty in many letters people sent me or I sent them (I kept copies along the way of some of my letters), looking face to face at where we found ourselves lacking or thought we were failing and, in equal measure, searching the mutable and abundant world for signs and wonders. It seems I confessed often to self-sabotage, pettiness, obsession, and mere stupidity while also praising bird song, the feel of the wind on my arms, the lush green fields (although they were full of chiggers and snakes), and the setting sun.
Out of wandering through the fields of my letters, I realized how much I missed some faded friendships, so this week, I’m going to Kansas City to have lunch with my old friend Ellen. I’m going to give her — as I’m also doing with other friends who are interested — the pile of her hilarious deep-dive-into-life letters. When I go to Vermont at the end of July, I’m handing Suzanne — one of my oldest friends (we met in a cave in mid-Missouri in January of 1980) — a bundle of her beautifully-written travels through interior and exterior landscapes.
Meanwhile, I’m wondering, even in this age of instant communication (such as I’m doing right now in this blog) if it’s time to start writing and mailing out letters again. Each one a meditation traveling in slow and real time that reminds me of the ties and the lines that bind.
It’s been a week of boobs and bravery on the move (and I don’t mean the supreme court, which I have other names for rather than slang for an often beloved part of our bodies), all as a consequence of me having had breast cancer and harboring the BRCA 1 genetic mutation. Part and parcel of unfortunately passing this genetic anomaly led us to Minneapolis this last week to support our daughter through her second breast cancer prevention surgery.
Natalie made the courageous decision to have a double mastectomy rather than face what’s likely more than a 90% chance of developing breast cancer. It’s been harrowing to watch her pain and fear while going through several cancer scares already (including one just before Thanksgiving when she had to wait a week after a biopsy to find out she was okay). What a brave 30-year-old she is for taking such a leap, entailed big surgery, subsequent pain and limited movement, six weeks of deep recovery, and now, four months later, a second surgery with much of the same although easier. Thanks to good genetic counseling and her own wise heart, not to mention what she witnessed me going through with multiple surgeries and aggressive chemo, she was able to make her own best informed decision.
She comes from a line of women spanning three generations who have also had to make such decisions. Five of us have had mastectomies, three of us because we had breast cancer (some more than once), and two to prevent getting such a diagnosis. It’s a strange legacy to be living, but here we are and here we’ve been, sometimes passing around our silicon boobs around at family visits to assess the weight and droop so that we can find what works best for us. We’ve also shared stories of the pump-you-up process of inflators followed by swapping those out for implants.
We fear for the next generation, not knowing who will end up with the cancer card in their genetic testing. For those of us who do possess that card, there’s screenings and blood work, careful monitoring of related cancer risks, and passing around whatever article we come across about new breakthroughs in surveillance and prevention.
Our bodies and psyches are geniuses are adaptation, something I know down to the bone. Not having breasts is truly no big deal to me anymore, 19 years after my double mastectomy. As wrote about in my memoir, The Sky Begins At My Feet, each morning I put on my glasses, when my prostheses, which spent the night cozily sleeping in my mastectomy bra. It’s not heroic or extraordinary, just the old normal.
Yet there are some unintended opportunities born of all this. Right before we left for the long drive up north, I got a new pair of prostheses in the mail and consequently mailed off my old pair to a young trans friend, who otherwise wouldn’t have any medical insurance to buy a good pair of expensive prostheses.
There’s also the strength and beauty I see in my daughter’s face, sitting up in her bed the day after surgery and the morning after being awake all night and sick as a dog from the meds (yes, this is a photo of her just then). There’s the deeper understanding of life and health, even for the fortunate with good medical insurance and loving support systems, as she walks outside with us, ten minutes up the block and around the corner as instructed by her surgeon. Each steps takes perseverance and a willingness to feel pain on her way to healing fully.
Each step and each choice sing of hard-won autonomy, a word that became even more precious and vivid to us the day after her surgery when the Supreme Court decision crashed so many of us into anguish. But when I look into Natalie’s face and the faces of so many of her generation, I see a fierce hope rising.
Weather. That was the theme of the 2022 Symphony in the Flint Hills, and because of all my weather poetry, especially my poem “Being Made of Weather” included in this year’s field guide, I was invited to come present. The free tickets didn’t hurt either, or at least, I didn’t think going could do our family or anyone else much harm. In end, it seems like we all escaped with our lives (although not our nerves) intact.
Even before the magnificent Kansas City Symphony warmed up, Ken, scanning radar on his sister’s phone, said Karen and I should be prepared to leave in 45 minutes. He showed us an extraordinarily powerful tornado about to hit somewhere, and it sounds like Marysville and surrounding areas took the brunt of it. The storms were enormous and spreading south crazy-fast, including to where 7,000 or so of us were sitting on folding chairs for the music, which also includes cowboys and cowgirls (the Outriders as they were called) doing a cattle drive. I figured we might not get to sing “Home on the Range” with people at the symphony’s end, but I was hoping we could at least get to “Somewhere Over the Rainbow,” the next song in the program.
Instead, the orchestra and the Outriders and cattle made a quick program change so we could see cows herded up the hill before the Outriders helped herd all of us to our cars. Yup, the year weather was the theme was also the year real weather took over. The program we came to see got quickly replaced by a much more vivid performance of what weather could be: beautiful, startling, mind-blowing, mutable, and dangerous.
Real comradery took hold while walking with thousands of previous strangers for the close-to-an-hour trek back to the parking lot while cowgirls and cowboys guided us back to the gravel road if we went too far astray where we might trip into ravines. “Moooo!” a man called out next to me, so a bunch of us mooed with him. I got to talk to a new friend I met on trail about what brought us to Kansas and why those low-hanging boob-shaped clouds are called mammatus clouds. A bunch of people stopped to help a woman who tripped. People made way for children and small wagons full of folding chairs while pointing to the north where the clouds performed for free.
Once back to the car, the second half of our weather-on-the-hoof program began, in which we get to stay relatively still and experience a panoramic sky changing quickly as the mothership supercell turned from a gray to green-black spaceship with the whiter, wider clouds above. “It looks like a mullet haircut,” a man waiting for the porta potty with me said. I didn’t get to make use of that porta potty because Ken, who had cell reception for a minute, calledwith the urgent message to get back to the car now — we were moving……or so we hoped.
It actually took an hour and 45 minutes to get from the parking lot to the highway since there was just one exit for all the cars to funnel (no pun intended) through. In the meantime, we made friends with a guy named Keith behind us, took our picture with mammatus clouds at sunset, and stared at the sky a lot. The grand finale was the moment cell phones screamed throughout the parking lot that we were in a tornado warning and should seek shelter immediately and not be in cars.
What to do because our cars were our only shelter? Keith and Ken said it as best to honker down on the floors of our cars and cover ourselves with blankets (which most Kansans, including me, have in their trunks). “That way if that car is crushed by the storm, we might have a chance,” Ken later told me. It would at least keep broken windshield glass off us. Ken, Karen, and I reasoned as we were immersed in rain, wind, and hail, first pea-sized, then dime-sized, and then nickel-sized. The rain flew sideways, and then the winds switched direction, which is not a good sign.
What do you do in such a moment? I was surprised by how quiet and relatively calm we were, perhaps not believing this was happening even if we earlier spotted some clouds drifting down in such the way tornadoes can begin. But thank heavens (literally), no tornadoes spun off into the hundreds of sitting duck cars. Instead, the rain, wind, and hail lessened, and we all got out and back home.
Some weren’t so lucky. I’ve heard of some attendees who arrived home to find their houses destroyed. Some had to drive out of their way, like our son Daniel and his girlfriend, who headed southwest because they would have otherwise driven into the fiercest part of this unpredictable storm. For everyone involved, weather made the event unforgettable and reminded us of what being made of weather can mean for our lives.
Speaking of which, here is the poem of the same title. Big thanks and admiration to all the people — especially the Outriders and the hundreds of volunteers at the event — who helped however they could and reminded us of how good and generous humans can be in the face of the sky.
Being Made of Weather
You have no idea what you’re capable of.
The rotation born of two opposing forces can
explode down Main Street in any town, any mind.
Fight the front moving through?
Give up and sleep through the storm?
Choices as if they are choices when it’s time
to ask yourself what you’re ready to give up,
and what you can save: dead photos, living animals,
a tea cup from great-grandmother, a pink-gray
arrowhead found in the rocks along an Ozark lake
in 1983 when someone taught you to skim stones.
Mostly, the hand of the child you lead into the cellar.
Mostly your own heartbeat, audible as hard breath,
which you must protect and give freely as light or water.
Always, the will to return the moment the storm
brings you back out to see what you’re truly made of,
lift the fallen branch or plank, bend to call out a name,
your whole life waiting for the smallest of motion.
Suddenly, I’m on the road a lot after the time-bending months of the pandemic. I went to Wichita for a night to visit with an old friend I hadn’t seen since B.C. (Before Covid), then to the Writers’ Colony at Dairy Hollow Eureka Springs, Arkansas for another kind of travel: into the memoir I’m writing for deep-dish revision. I did a side trip to Fayetteville to see several long-loved pals. Today, I’m preparing to go a few hours southwest to the Symphony in the Flint Hills (free tickets arrived to compensate me for a poem in the field guide), and in a little over a week, we do a longer road trip to Minneapolis to help our daughter.
It’s a little discombobulating. It’s a bit exciting, and at times, on long stretches of monolithic freeways, a bit boring. There’s the old annoyances of drivers cutting us off or having to stop regularly to make my way through junk food to gas station bathrooms. Sometimes there’s a whiff of danger, like when part of a tire flew into the car yesterday somewhere on I-44 in Missouri. Often there’s great music to sing along to, good conversation (even when I’m alone because I can’t stop talking to myself), and astonishing skies. There’s also the memory games of what to pack and the hauling and sorting back into drawers and onto shelves after each trip.
Like many of us, I’ve been more wedded to my home after these years, so whenever I walk out the front door toward the car for such a trip, I feel a magnetic pull to go back inside, curl up on the couch with the cat, stay put. But June is, to quote the Oscar and Hammerstein musical, “busting out all over,” despite gas prices, rising temperatures, and a banner year for chiggers. The call to be with people and in places I love propel me to the car, and the car seems happy and jaunty on the road. So I’m a traveling woman lately, craving stillness and loving the journey all at once.
Yesterday began with running outside in our pajamas to cut irises as fast as possible while 70 mph winds and a giant thunderstorm descended. The day ended with a full lunar eclipse’s red moon. Some days are like that – force of nature days when everything seems to happen with such power, art, soul, and amazement at once that it’s clear we are not in charge. Ultimately, life is like that, and often it’s too easy to forget.
I write this from Brave Voice, the 17th annual retreat I lead with singer Kelley Hunt in the Flint Hills of Kansas. The irises were to vase up and distribute throughout the camp in each of our cabins and in the main lodge where we meet to write, sing, listen, collaborate, and dwell in wonder together. The storm made driving from home to Council Grove lake, where the camp is, more than interesting, Kelley at the wheel and Ken on the phone tracing our location with radar to warn us when we might need to pull over and wait out the downpour. The eclipse happened for most of of us in this area with clear skies that darkened to pop out the stars even more so, the Milky Way dazzling as it arced across the night sky.
Yesterday we went from the deadly and dramatic to the sublime and rare, but actually, even more ordinary-looking days are much the same. The earth is at the wheel despite humans making so many species, including ourselves if we continue on our current trajectory, extinct. When I see headlines or catch snippets of conversations about how we’re killing the earth, I bristle at the language because this big rotating planet will survive, perhaps in a state that barely supports life as we know it long after we’re gone. But the earth is like the Dude: it abides. It’s been here long before fish-like creatures crept out of the water and learned to breathe air and evolve into so many other species (including us), long before ice ages and continents breaking apart (and aren’t we all still in motion?), long before bipeds were just glimpsing how to measure out units of time to support the hunt or remember where to return to harvest what grows underground.
Big winds, red moons or not, each day tilts open the force of nature that is us and that is. Like right now when I sit on a porch outside the White Memorial Camp lodge, mesmerized like several others around me by the build-up, then slow-down of bird song. While I watch the rabbit racing the sun across the field, the cardinal landing to look for dinner, the oak tree moving its tentative fingers in the same wind that covers half my face with my hair. The open blue sky, so vast and mutable, is a constant force of nature and so is all it holds, even us if we’re brave up to speak and act for this beauty persistence that just wants to live.
Going from winter (otherwise known as much of April) to summer (disguised as May this year) has plummeted many of us in Kansas into the high humidity of late summer, chiggers and thunderstorms and all. While determined to work outside on this porch as much as I can — ceiling and floor fans swirling and iced water flowing — I’m hot, sweaty, shaky, and a little stunned. It feels like those breezy spring days full of blossoms galore and chilled good sleeping weather have been climate-napped away. But then we live in and do well to acknowledge the extremes wrought by life and global warming.
No season leaves us without gifts, however, and lately, the mid-90’s day temperatures dissolve into those luscious summer nights that I also live for. Walking on deck or down the gravel drive each night (lesson learned from this weekend: don’t walk in the grass without protection because the ticks and chiggers are fierce), I’m reminded of how much I love strolling through summer nights. Like most things in language, a poem shows that better than I could explain, so I dug out a small set of poems I wrote some years ago over the course of many summer nights. This poem (along with many others) appears in my book, How Time Moves: New & Selected Poems.
Three Walking Songs for the Night
I walk across a field. No more destination,
journey through or over water.
No more dreams of arriving.
I’m here, overlooking a small slope
that leads nowhere. Leaves drop out
of the wet branches. The field eats them.
A fox. Then the sky turns itself
like a clever hand this way and that,
blocking or letting through the moon.
Sometimes rain falls. No matter.
The animals come anyway.
When it clears, I lie on the fallen grass,
look at the brave sky,
and tell myself, “shut up and trust that.”
When I wake in the dark, I will go to the forest
with no flashlight, and walk slowly, afraid,
letting my feet make out where next to step,
waiting for what’s hidden to let me into its hiding.
No longer dreaming of his hands cupping my head
tenderly, I will just walk in, feeling only
where to land, the noise of the running world no longer running,
the tree frogs cupping their motor song over
the motor song of the cicadas, the brush of branch
on branch, the owls a broken harmonic.
Oh, dream of being loved so perfectly,
Oh, dream of forgiveness,
Oh, damp moon in a pool of clouds,
wide stillness of nothing that we call sky,
now, please let me be brave enough.
I was afraid most of that year.
No particular reason.
Just the rush of old air through my lungs
as if it had nothing better to do.
I’d wake a lot at night, puppy diving
after the kitten, the baby nightmaring
right into the center of my good dream.
I’d wake for nothing also,
sit up, climb out of bed, walking the house
to prove to myself there was no reason
to be afraid. I mean, look at that moon
carrying itself branch to tree branch.
Look at the indentations the wind makes
of its body in the grass.
See how round the earth is,
remember how many animals sleep
hidden like prayers in the tall grass.
See the open mouth of the sky, the shifting of stars
across the throat of the universe,
this time in its slot actually happening.
Cancer is often measured in anniversaries and fruit. We survivors often report in with our years out from the cancer after our initial diagnosis, yet in diagnostic land, we speak of tumors as big as grapefruits or plums.
Today is my third anniversary of being diagnosed with eye cancer aka ocular melanoma, which made me wonder how many years I’ve survived breast cancer. Twenty, and I think it’s a good thing to not have remembered my March 22, 2002 anniversary until now.
“Ordinary people stuff — that’s what you want to get to,” Dr. Stein, my breast cancer oncologist, used to tell me when I was in the middle of intensive chemotherapy almost two decades ago. He meant getting awful colds, flat tires, and bad haircuts, the random annoyances of a life not coalesced around cancer. That includes winking at cancer anniversaries on my way to get some groceries or scrub my bathtub.
While it’s a cliche to say anything can happen, it’s also wind-blown and bone-deep true. My first cancer — a common variety that I was prone to get because of family history and genetics — didn’t teach me that as much as the most recent one — a rare cancer that no one seems to know a lot about except that it tends to be aggressive and needs to monitored for years, decades even.
While there are hundreds of varieties of cancers, let alone various stages and nuances, my experiences were a bit of a study in contrast. I was Stage 2a breast cancer, meaning it had slipped the chute of the tumor (less than the size of a pea) for the hinterlands of the lymph nodes. What followed was rollicking but clearly mapped despite the sudden diversions.
The story started with a mammogram, follow-up imaging, and biopsy, then a lumpectomy, which I thought would land me in short-term radiation and a quick recovery. I cried on the phone with Dr. Jew, my breast cancer surgeon, when she told me of the lymph node involvement, but she also assured me, “Now we’re going to pull you up by your bootstraps, and you’ll be fine.” That’s what we all want to hear with cancer: we’ll be fine, okay, still here for the foreseeable future. What followed? Chemo, a BRCA-1 diagnosis (meaning I had an extreme chance of recurrence and ovarian cancer), and a bunch of “omy” ending surgeries: hysterectomy, oophorectomy, double mastectomy. Although I experienced many manner of ailments and some dangers (a lot like crossing the Fire Swamp in The Princess Bride), I was fine once on the other side.
Three years ago today I sat in a small, dark examination room with Ken and my soul brother Ravi when an ocular oncologist told me — after an ultrasound of my eyeball and contrast dye scan that involved staring into the fires of Mordor — it was a melanoma, and it was large (thankfully, she didn’t give me a fruit analogy). She had earlier said it was either that or a brain tumor, to which I replied, “Let’s just root for the melanoma then.” The wait between that conversation and the actual diagnosis was one of the hardest hours of my life, my mind drowning in scenarios of not a lot of time left on this planet I love so much.
But this cancer, unlike my first one, was not mappable. My new oncologist as well as my therapist and other wise people told me adamantly not to google “ocular melanoma,” and they were right (something I discovered when I did google it one terrible night). There are something like 27 stages and the mortality rate is high, all of which changes the language of statistics and detailed staging to something more akin to impressionistic art (which is also how my right eye saw and continues to see the world). While I didn’t experience much pain in my breast cancer road trip, this was an odyssey to uncharted territory, plus the eyes are delicate creatures. Two surgeries — one to insert a gold disk with radioactive pellets, and one to remove the disk — were post-anaesthesia excruciating, especially in a migraine-prone woman. Light hurt and it still does on occasion.
Although today is my eye cancer anniversary, I’m not sure what that means because I’m not clear (especially when I look out my legally-blind but seeing-in-its-own-way right eye) on when I’m completely in the clear. That might have something to do with having CT scans or MRIs every season for at least ten years, each one assuring me that there’s no micro-metastases to liver or lungs, and each one another high-five with the universe that I’m okay. But I am okay, years after my ocular oncologist said “I promise you, are you going to be okay.”
What it is an anniversary of is gratitude and love. I’m so grateful for all the people who love me and who I love who were there and still are with me three years later. My friends and family who brought over Ritz crackers and chicken soup, sat ten feet away from me outside during the stretch when I was radioactive and hurting, listened late into the night (especially Ken, who was my real-time, all-the-time greatest supporter), and talked me down from trees of fear. I’m so grateful to be here and so in love with this life, right now full of teenage-sized leaves blowing hard on Cottonwood Mel, bright clouds and contrasting deep blue skies. It all reminds me how good life is, each day an anniversary of getting and being here.
Sometimes I feel like I’m at a sudden still point between waves of motion and change. Like right now as I sit in a floral chair in my living room, staring out at the just-cleaned kitchen counter and still-stuff-piled-on kitchen table while the dog sleeps in the corner and the cat sleeps in her clementine orange box. But of course the whole notion of a still point is just a notion. Life is famous for tossing one damn thing after another at us, but beneath all the damn things, everything is always in motion and all is perpetually changing.
Still there are these in-betweens: the wisps or room fulls of spaciousness that, as I get older, feel more real than the packed whirls of activity and action. Pay attention, I’ve been reminding myself for years. Cherish this.
It is easier to talk about what surrounds the in-betweens because that kind of stuff has names and lots of language to delineate it from the unscheduled, the quiet, the open-palm time that’s also on tap. For the last few weeks, I could speak of oral surgery, Passover, eating a Havana chicken sandwich with a friend, walking across the field with Moxie the dog, loading the dishwasher, opening the mail. I could point to wonders around me: the first budding lilac, the light on the porch in this photo, a great breakfast of Matzo Brei (friend matzo, likely an acquired taste), and the cool joy of cold water when I’m thirsty.
But to speak of the in-between is to speak in between language. Then again, that’s why we have poetry. “Language does what it can’t say,” William Stafford once wrote, and he also wrote something in his poem “Bi-Focal” that I continually ponder about the world happening twice: “once what we see it as;/ second it legends itself/ deep, the way it is.” Maybe the in-betweens are when we catch up with life as the way it is more than the ways we name or see it. There’s grace in such meetings.
Then again, maybe it’s in-betweens all the way down to and past the last breath of our life. One of my favorite Emily Dickinson poems, which begins with “I felt a funeral in my brain” (none of her poems were actually titled by her) ends with these lines:
And then a Plank in Reason, broke,
And I dropped down, and down —
And hit a World, at every plunge,
And Finished knowing — then —
That word “then” and the long dash are both in-between things pointing to what happens when we finish knowing, and then —
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