When life feels out of control, I start counting. I first noticed this habit/neurosis/coping mechanism when I was in labor for my oldest child. I was in too much pain to count the seconds of each contraction, but between them, I couldn’t stop counting. My mind was immersed in a world of ascending numbers, which made me realize I had been counting seconds in quiet moments throughout the pregnancy, maybe as my way to prepare for the Olympic event of birth.
It’s no wonder that many days, especially closest to the eye cancer diagnosis and surgical/radiological treatments and long recovery period, I’ve been counting. I counted (first days and eventually in hours) out how much time passed and would need to pass during those five long days between when the tiny gold bowl of radiation was implanted under my eyeball and when it would come out. Since there, it’s been how many days since the diagnosis, first surgery, and second surgery — a way to measure the immeasurable thunderbolt of initial fear, then the stretch of road unfurling around surprise bends and drops toward healing.
Today it’s 133 days since I heard those dreaded you-have-cancer words. It’s 87 days since the first surgery to initiate Operation Tumor Melt and 82 days since the second surgery to remove the bolster rockers (radiation implant). But just this morning, I found myself counting forward, not backwards: it’s only six days to the three month anniversary of beginning treatment, and by December 14, it will be six months past, by which time I see myself (so to speak) even more healed and healing, especially since the medical treatment takes a while to resolve and dissolve that tumor down to just a wispy scar of itself, inert and of no danger to me.
What I believe in is beyond the reach of numbers, but healing is like that. Eventually the physical reminders and tiny irritations, the prednisone eye drops and dilating eye drops (to blast scar tissue off the lens of my eye) will be as distant as any visceral memory of the pain of contractions. The lessons of all this will come into view over months and years in ways that name or don’t name themselves to me: what it means to be mortal, the power of love, the mystery of healing, and how vast and uncontrollable time is. What I mean by the latter is how much we all get to learn (unless we die quickly and unexpectedly) about how the future is not what it’s cracked up to be or what we get to map out in numbers or letters, although intention, prayer, and contemplation help.
As I move toward seeing myself as generally okay, out of pain and danger, and healthy, I notice I’m not counting as much. Instead, I’m sitting here watching the last few raindrop slough off the gutters and into the flower beds, so overgrown from three months of no weeding that it’s not worth even beginning to find the ground beneath it all. I’m listening to the soft and whirling waves of the crickets as well as to a jazzy version of “Jet Song” from West Side Story. I feeling the subtly moving air on my arms. I’m counting on such arrivals to where I actually am, breath by breath instead of number by number.
Arm-in-arm, Vicky, Eduardo, Ralph, and I walked down the snowy country road, belting out “Walking in a Winter Wonderland” and doing wheelies backwards and forward in the heavy-falling snow as we laughed. It was well past midnight, probably around 1997, and I was in love with my colleagues, students, and teaching at Goddard College, where students designed their own curriculum based on what they felt compelled to learn for their communities and souls. I was sure that I would teach here until I was well past retirement age.
A few days ago, I signed, scanned and sent in my final paperwork to be formally “separated” from the college, and although I had been planning this leap from what I loved for many months, I was surprised by the panorama of emotions that engulfed me in sadness, strangeness, and something beyond naming.
Last January, insomnia took me up the mountain of making this decision until I realized it was time to come down on the side of leaving. The urge for going began over a year ago when an economic crisis at the college, coupled with my exhaustion from teaching for 64 consecutive semesters, led me to go on leave. Then the dreams, as some of my readers know, began: dreams of following retired faculty into the woods, dreams of walking away from the college in the middle of the night, dreams of saying goodbye to staff and faculty while wearing raccoon make-up. I would wake up, argue with my dreams that I loved Goddard too much to leave, then the next night, another dream kicked my butt.
The dreams didn’t come out of nowhere (as dreams rarely do): my body had been singing, signing, and whispering its leaving song for a while. I rarely went to a 10-day residency, bracketed by 12-hour travel days (and that was only if everything went according to plan) without coming home sick, then struggling for a month or two to reach equilibrium. I grappled with living mostly in Kansas but, close to four weeks each year and longer in my dreamscape, in Vermont also.
I also heard something else calling my name: growing Transformative Language Arts, the MA concentration I started and coordinated at the college since 2000. I believe in paying attention to signs and wonders that nudge us toward our real work, and although I had been able to balance teaching half-time plus doing administrative tasks at the college with facilitating writing workshops, my own writing, and coaching and consulting work, that balance was changing. I felt compelled to develop new ways to help people write and witness the guiding stories that showed them their real work, truths, and strengths.
So I made the leap. The timing was good as the college needed to reduce faculty in alignment with student enrollment, an unfortunate problem facing multitudes of small colleges lately. As I told people and amplified my wishes and ideas for evolving work, I found some new inroads and a whole lot of support. I also tripped into new ways of seeing my work and life by virtue of — surprise! — being diagnosed with eye cancer in late April, then going through treatment, and now recovery. Nothing like a whole lot of illness and healing to land a person in a new place in life!
As I move forward, regaining blurry but increasingly larger windows of vision in my right eye and in my sense of what’s next for me, I look forward to what I’ll see and be called toward. At the same time, I wanted to pause here to honor all that I love about Goddard: sitting with a student at twilight in my office as we puzzle out her study plans until she bursts out laughing and crying at once in relief because she now knew what she wants to do in her life as well as semester. Or singing “Salaam” though the thin walls of our offices with my colleague, the Rebbe Lori, before we scooted out to swim in the freezing-cold waters of the quarry between meetings and dinner.
I loved rehearsing with the faculty for our cabaret act, the Goddard College Dryland Sychronized Swimming Team, while fellow faculty member Katt kept calling out, “Now remember. We don’t want to over-rehearse” although we only had one 10-minute rehearsal.
I loved walking the wooded road from the dorm village to the library alone or with students, joking about how the wind in the trees was transmitting magic. Or those solo walks across the now-gone (due to a storm) the forest’s Wabi Sabi bridge after a long day of faculty meetings.
I loved the Wednesday morning field trips each faculty member could take with their students, especially the one where Ruth, our program’s director, joined my six students and me in the Goddard van for a wander day in which we simply aimed ourselves whatever direction we felt compelled to go. Of course, we ended up at a remote Buddhist center where we fell under the enchantment of the bells.
I loved the quiet moments in the residency cabarets when someone got up to sing, tell a story, dance, or play the piano publicly for the first time, took a breath with all of us, then began.
I loved the summer meteor showers even when, lying on a bedspread next to a dorm with a bunch of faculty, we could barely see the sky through the trees. I loved the winter nights when the snow sparkled in kaleidoscopic ways I’ve never seen anywhere else, and I adored the ways the firs and pines dropped snow from their branches in seemingly slow motion.
In the here and now of this Wednesday evening when my former colleagues are at the college for a residency, I watch my shadow self sitting in a dorm room, as I would be doing if I were still a faculty member, a stack of student papers to read and a day of meeting ideas still swirling in my head. I tell her it’s time to cross that Wabi Sabi bridge of love and memory to the here and now of where I live. The rich Kansas night air — packed with the music of katydids, cicadas, crickets, and humidity — stirs me home. I am grateful for all of where I’ve been and for wherever I’m landing.
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It occurred to me recently that I’m in the middle of a big life reboot. Thanks to the eye cancer, treatment, and recovery time, I’m in a different season of my life than summer would have led me to believe. But that’s what life reboots do: they strip us down to the essentials of staying alive, then re-orient us to see and even be in the world a whole new way.
I realize that all of us get rebooted in our lives, and usually more than once, catalyzed by a medical diagnosis, a big loss and plunge into grief, or an old dream dying or dead. But everything can and does change with seemingly happy things too: falling in love big-time, finding the job of our dreams, or moving to our seemingly forever home. What we thought was the life plan, the itinerary of our own invention, or the trajectory we were supposed to live turns out to be a dry husk of a once high-flying insect. Just like when we reboot our computers, we have to shut down the old ways, wait for a new start, and enter some kind of password or otherwise invoke magic words or deeds to begin again. Unlike the computer, when the screen comes online again, it doesn’t often have all the same icons staring at us.
For me, the reboot started April 28 when the ophthalmologist told me I definitely had a tumor in my eye. It continues and will likely still keep unfolding over the coming months as the radiation treatment plays out its tumor-dissolving magic. Late spring and summer have become something else indeed.
Instead of going swimming two or three times each week, driving to meet friends for lunch or wander through Kohls to see what cool shirts are on sale, and going here and for gigs and meetings, I’m home, watching what is usually high summer move through me like the wind through the trees, also rooted here. The gains are more abundant than the pain (just about all gone), fear, and anxiety. Each night, we make time to sit on the porch, and in the dark, listen. We can usually make out at least four different kinds of katydids interrupted by the the tender and mournful call of the barred owl. Daytime, like right now, I’m also on the porch, hearing swirls of wind topple through the osage orange trees while a bird I cannot see pierces the waves of cicada humming (or roars). The soundscape continues to open up.
My work in the world — and I don’t just mean how I make a living — opens up too. For the last year, I’ve been considering ways to make a living without leaving the house as often, and boy, is that coming true with a vengeance. Some of my coaching client are coming here now, and over watermelon on the porch, we talk through new essays, website copy, and what a poem truly wants to be. The urgency that has driven the rambling hippie school bus of my livelihood for years is no longer onboard, and that bus is parked somewhere in the back 40. Instead, I’m letting come to me more than ever what my best ways are and could be to grow Transformative Language Arts — the ways we can use writing, storytelling, theater and more to enhance our lives and world (yup, and the Patreon campaign is part of this).
But there’s another closer-to-the-skin layer of my work: to listen more, be stiller, and trust more deeply that what’s mine to do will make itself evident (while resisting what’s not mine). Every chance we’re given to see our storyline — what we thought we were living, who we thought we were — fall away is a gift.
When the anesthesiologist and nurse started me on Fentanyl last Wednesday, I told them I loved them both, and I meant it. By the end of the five days of hosting the gold heart of radioactive seeds in my right, the pain around in my eye and temple was so intense I was up most of the night before surgery. But once I got to the surgery prep room, told the good people around me of my nausea and pain, all manner of relief ensued: the nurse gave me a small cotton ball with peppermint oil for my nausea, then inserted some additional meds into my IV. The anesthesiologist gave me a Tylenol, then okayed the heavier narcotic which proved to miraculously fast-acting. In the body space where big pain resided, peace and joy rose over the land of my life within minutes.
All of this has me thinking a lot about the lengths I could go to to outrun pain, which are considerable. I can’t imagine slapping a kitten or stealing a car, but my mind along with the rest of me would toddle up desert mountains without water for pain relief. When I consider the times in my life when physical pain has ruled the roost — those three natural childbirths, a horrendous bout with an upper G.I. bleed once, and a history of dancing with migraines since I was a teenager — I know that when I’m in the grip of something painfully gripping, I would easily beg at the altar of pharmaceuticals for anything to take that pain away, and if that’s not possible, put me to sleep until it’s over. I have no doubt that had I given birth in a conventional hospital rather than a marvelous free-standing birthing center, I would have happily called out, “yes, please!” if an epidural was offered, forgetting my commitment for as healthy a birth as possible for the baby.
Then I consider the kind of chronic pain so many people I know live with — constant back agony, heart-numbing depression, myriad sharp pain throughout the body without rhyme or reason, and so many other physical and mental states equivalent to the ROUS (Rodents of Unusual Size) in The Princess Bride. There’s also the pain of the social body born of prejudices and biases: constant attacks on the self for not being white or straight or thin or whatever else enough. Lately, there’s the immense and needless pain of what is being done to thousands of migrant children, locked in cages without food or bedding, alone or crowded without enough ventilation or tenderness to survive on without incurring damage. We may not be experiencing such pain directly, but that’s the thing about pain: knowing it in enough intimacy often helps us tilt open the door of our own heart so that we can better see and respond to the pain of others.
My 12 days of surgery and migraine tussles suck of course, but perspective tells me it’s just a drop in the fuck-it bucket of what so many others are going through right now, whether it’s a six-year-old Guatemalan boy trying to keep a toddler fed on a concrete floor in Texas, a neighbor down the street carrying the shattered pieces of her grieving heart to the empty bed tonight, or someone who cuts me off in traffic because he was up most of the night with shoulder pain.
“Oh, for the relief of pain!” is a human chorus, coming back around at every turn if we look widely and listen deeply enough. What those of us harboring pain would do to relieve it is just as vast and complicated, and although this is surely what I always warned my students against — vague generalizations — I’m vaguely generalizing that a lot of pain in this world is fed by what we do or try to do to relieve the root of suffering. The opiate crisis, a rash of suicides, our collective issues with over-consumption that severely and negatively impact our climate and even our own survival — they all create ripples of pain, often without resolving the original pain or with replacing it with something even more vexing.
But that’s the thing: not all pain can be relieved. Some of the Turning Point writers I work with live with acute and constant pain from years of harsh chemotherapy or progressive neurological diseases. Some of my friends, surviving without beloved partners or parents or siblings, carry that vivid emptiness with them daily. Some of the people who brush past me in the food co-op or bank are hurting in an alphabet of pain most people can’t imagine.
All we can do is say it: I’m hurting. All we can do is ask: please help, or please just sit here with me cursing this embodied moment of sharp edges. All we can tell ourselves is, “Yup, it’s bad now, but I have hope it will be better tomorrow,” even if we’re repeating this refrain tomorrow. And all we can say is “I love you” to the world, even if temporarily disguised as a smiling nurse and anesthesiologist on the small island on what hurts surrounded by the bigger beauty of life.
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That’s what Cynthia said as she led me back to the surgery prep room when I told her I was scared. “And don’t you worry because God made women stronger so we can get through anything.” Cynthia works for St. Luke’s hospital in Kansas City, and although I don’t know her official capacity, she wears a bright blue and white button that says “success coach.” Her words were cool water to me in the desert, pretty literally because I was parched from the no-water-before-surgery rule, and I was crazy scared.
Over the next few hours when I was prepped on Friday, she popped in the room every so often, teasing me about going to the restroom so often, an effective avoidant strategy for me and inconvenience for the medical personnel when I’m hooked up to IVs and monitors. But her words about how God’s got me helped me breathe just a bit more deeply.
Now I know all of us don’t resonate with the word “God,” and to some it’s more than off-putting, but I believe that something/someone/somehow has got us. Call it the higher self. Call it the life force. Call it the Great Spirit. Call it Jesus or Buddha or pure love or real life. For me, God works just fine, shorthand for “the force that through the flower drives the green fuse” (to quote Dylan Thomas) as well as for the unconditional, abiding love we’re capable of giving and receiving.
Since surgery, I’ve come to the oasis of Cynthia’s words to refresh myself even and especially when I’m in pain. When post-surgery head pain and nausea dissolve into hours of exhaustion and restlessness. When an excruciating migraine wakes me up at 3 p.m. and I need to wait until daybreak to take my meds for it because they have caffeine. When surprise nausea hits for a few minutes, and more often, I’m rushing to the bathroom for bouts of digestive hell. When the itchiness and drainage of this right eye drive me crazy. When the fatigue and confusion of my left eye, surely mourning the loss of her partner for these five days, disorients me. When, which means most of the time, my right eye burns. When there’s little I can do but color and listen to birdsong.
But then there is birdsong, color, and all the ways God’s got me. When my close friends and mother’s voice on the voices tell me I’m still me in this good life. When Judy and Ken carefully rescue a green caterpillar caught against the screen porch screen so it can go on to transform into whatever butterfly it is next. When I listen to Brandi Carlile’s “The Joke” or anything by Mary Chapin Carpenter on itunes. When Kelley shows up with soup that’s just what I need. When Ken and I laugh together at a scene in Northern Exposure for the hour each day I can watch something (I get too eye-tired after that). When I blessedly fall asleep on the porch to the tune of hummingbird buzz and the unseen birds on the left chatting up the unseen birds on the right. Whenever I look at the gorgeous bouquet of flowers my sister-in-law Karen and my nieces sent. There’s also texts full of heart emojis, our daughter’s voice on the phone, our son coming here each evening to patiently take our dog, a little freaked out that he can’t be near me, to my in-law’s home for the night, and mostly, there’s Ken, sick with some crazy virus himself but making me tea, sitting outside with me to take in the walls of green life, and talking with me when I otherwise would be talking myself up and down walls.
I can only hope others going through challenges, particularly those of you who are chronically ill in ways that keep unfolding in unpredictable or same-old-same-old ways, have such support holding you. At the least and the most, I wish that someone’s got you too (as in “gets” who you are and holds you), which makes me think of the ending of this Rainer Maria-Rilke poem (translated by Stephen Mitchell), “Autumn”:
We’re all falling. This hand here is falling.
And look at the other one. It’s in them all.
And yet there is Someone, whose hands
infinitely calm, holding up all this falling.
Wednesday, there’s both relief and another big passage ahead: the same surgery, but this time to remove the gold heart (as I’m thinking of it) full of radioactive seeds. I don’t know if I’ll see Cynthia, but I’ll wrap her words around me like a woven shawl of blues, greens, prayers, and wishes. As with everything, I don’t know what the aftermath of that surgery will be like, but I’m grateful to know God’s got me.