When I had breast cancer 17 years ago, I learned some things about resilience, the ability to bounce back. There’s nothing like being thrown off a bucking bronco to discover that yes, you can hit the ground, hard, and yes, you can hobble back to your feet and strength. There’s also nothing like community and all the love that made me upright again, then fed me homemade soup at regular intervals.
In 2002, I discovered I had breast cancer, lymph node involvement, and also the BRCA 1 genetic mutation — which increases the risk of breast cancer, ovarian cancer, and other cancers (even melanomas, like what I now have). There were three big surgeries, akin to holding onto a mechanical bull in the middle of a tornado, surrendering to the anesthesia, and waking up to nausea and clear skies. There were also months of chemo, mounting one unbroken pony after another with the certainty that I would be thrown off and I would throw up, and my white cells and mojo would plummet. I’d be overtaken by a numbing white sleeve of sleep at any moment interspersed with steroid-induced closet re-organization at 3 a.m. Ken, my family, friends, and big community love got me through, filled our refrigerator with blintzes and chocolate pudding for the six months of chemo, drove kids to and from piano lessons and hospital visits, brought me a TV and VCR (we had neither beforehand) so I could zone out on Steve Martin movies, and talked me through fear storms.
In the years since, I’ve understood that the cancer rodeo grabs hold of many of us as patients and just about all of us as people who love people with cancer. Having facilitated writing workshops for people with cancer and other serious illnesses at Turning Point in Kansas City for the last 17 years, I’ve also seen miraculous displays of grace: people who find the strength to open their hearts to life and make new meaning. From all of this, I’ve learned a few rodeo tricks and tips from the pros:
Generally, the hardest part is the excruciating limbo between “you have what sure seems like cancer” to a precise diagnosis and treatment plan.
New and mind-blowingly innovative medical treatments are coming to fruition all the time.
Energy healing and other forms of healing (whatever works for you) — acupuncture, massage, yoga, nutrition, walking with friends, laughing our asses off together — at best can spark startling revelations, and at worse, can dissolve incapacitating fear.
Denial is not a dirty word: it’s a necessary coping mechanism along with dimming the harsh lights of what’s likely ahead for us. We can’t live fully while carrying a backpack full of big rocks all the time.
Statistics are somewhat meaningless in the intimate space of being alive as a singular person connected to other people in the here and now. I’ve seen people with stage 4 cancers kvetching and sharing jokes 15 years out, and I’ve seen the opposite, too.
Cancer doesn’t change who we are; nor does treatment. I feared I wouldn’t still be myself on heavy doses of chemo, and yet I was totally still me, maybe even more so. Big dances with mortality reveal to us more of who we innately are, and that is a priceless gift of perspective.
There’s incredible good company at the cancer rodeo: people with the best senses of humor and get-up-and-go gumption because of close encounters with the life force. These are the best people you’ll ever meet or even be.
No one is immune to mortality.
Which leads me to now: some fuzzy vision in my right eye and a lot of blinking since March led me to an excellent ophthalmologist, Dr. Brown, who, after two hours of shining lights into my eyes while having me look right or left and taking various images, had to tell me there was definitely cancer there. My stomach plummeted, and I felt the floor fall away. The rest of the day included talking with my wonderful integrative physician, Dr. Sandal, and my fantastic oncologist, Dr. Soule, in between a lot of phone calls, numbness, loss of appetite (a rare thing for me), occasional freak-outs at what wild animals I would have to ride and fear over if I would get to the other side intact. I also petted my cat a lot.
Yesterday, Ken, my soul brother Ravi, and I went on an inner space mission to Dr. Desai, a superb ocular oncologist at St. Luke’s Hospital. Did you know they can do an ultrasound of your eyeball? I know that along with how contrast dye of the eye produces clear images and that if you subtract the shortest man in the world from the tallest, you get Shaq O’Neal (“Who Wants to Be a Millionaire?” was booming in the waiting room). The extreme possibilities were extremely dire, and while I won’t know for completely sure if the rest of my body is clear until after the PET scan and brain MRI, when Dr. Desai said it was a treatable melanoma, I burst out crying in relief.
What’s next is a tiny gold button full of radioactive pellets planted behind my eye before being removed five days later. Then, aside from potential and probable long-term side-effects and vigilant monitoring for the spread of micro-melanomas, I’m done with this rodeo, and maybe with the cancer rodeo circuit for good…..or not, which is a big reason all this can be so scary.
Now it’s time to ready myself for the rodeo and other metaphoric renderings of what’s ahead, knowing I will find a way through thanks to dedicated medical professionals, gifted healers, and especially my best-beloveds, particularly Ken, who gets to go with me yet again through a mess of tests and challenges. While I don’t own a pair of red cowgirl boots, I can barely ride a horse, and I can’t yodel to save my life, I can be brave enough to let all these people and procedures save my life. Then, probably sometime this summer, l’ll be on the other side with a more resilient spirit, more grateful heart, and maybe a cowboy hat too.
Thank you for reading this and being with me at the start of all this.
The week began with news that blew me away: a beloved colleague, who was the rock and heart of the college where I work, died suddenly. Then the wind picked up to the tune of 50-plus mph gusts that shook the house around my shaken heart.
The wind, part of a weather system called a bombogenesis, was so strong that I had to postpone a classroom visiting and reading in Hutchinson, Kansas, 200 miles from here, because it was too risky to drive without being blown off the road or into oncoming traffic. The grief my college community feels is so strong that it’s hard for many of us to stay on the road of whatever task we’re following, and we share our pain as well as love for our colleague through phone calls and emails.
There are times in life when we’re blown-away: blasted out of our usual ways of being or thinking, maybe even out of our minds too. It’s hard to sleep, think, remember to turn off the stove or step outside into the wild yet grounding presence of the world. It’s scary and edgy, strange and familiar, and altogether a moment that shines and blares how vulnerable we are, how precious our lives, and how fast things can change.
Yet I also recognize that at such times, I’ve blown right into the center of my heart, however flawed and confused it is. There’s nothing like being blown away to make me stop in my tracks, see that they are somewhat arbitrary tracks to begin with, and reconnect with what matters: being kind, loving, and empathetic. Staying as safe as possible and off the roads to potential danger when the big winds come. Taking care of myself and others as best I can. Catching up on sleep, the dishes, and remembering to feed the birds.
Today the sun shines brightly and the wind is below 20 mph. But elsewhere in the world, people are being blown away by the mass shooting hate crime in New Zealand and the fast-moving floods swallowing whole towns in Nebraska. Bombogeneses usually happen over the ocean, intensifying hurricanes, but they’ve proven they can happen over the land, and when it comes to human behavior, a sudden intensifying of damage and loss can also drop to new lows.
In the aftermath of such wild weather, we can recognize why why we’re alive, which I think always has to do with showing up, even with a trembling heart, for ourselves and each other especially when we’re most blown away.
“So instead of New Year’s resolutions, I drew up a list for 2019 of experiences that had already passed: a record not of self-mastery but of genuine surprise. 1. My oncology nurse became a dear friend. 2. Even in the hospital I felt the love of God. 3. Zach is under the impression that I never get tired. These are my small miracles scattered like bread crumbs, the way forward dotting the path behind me.” — Kate Bolwer
In reading Kate Bowler’s evocative essay, “How Cancer Changes Hope” and revising poems for my next book, How Times Moves, I’ve been making a U-turn from manifestations for the future back towards surprises from the past. What delights me most in life — and maybe you too — is exactly that: how something far better and more amazing happened than what we pined for, depended on, or planned, like right now when, in middle of writing this, Bruce Springsteen’s “Surprise, Surprise” starts playing on KCMG (my large itunes collection).
My moments of genuine surprise include these which all happen to be moments of education too:
I realized, while in the bathtub on Memorial Day, that I was going on leave from teaching after measuring my life in semesters for 33 years without a break in the pattern. Further thickening the plot, about a month into my leave, I caught myself up on how my soul had actually decided not just to take off a semester but a full year. A corollary surprise was that I had organized enough extra work and income to take such an unpaid leave.
One-on-one coaching is so much akin to holding someone’s hand as we step into the wild landscape of their creative callings. It’s also something I love doing.
I’ve fallen more deeply in love with Lake Superior, my husband’s laughter, what a crockpot can do, all three of my kids, walks along the curving perimeters of cedars on shining days, yoga, the pink shimmering ring around the full moon, making art (parfait dyeing, sculpey, watercolor pen play, etc.), homemade butter, reading, long lunches with dear friends, mackerel clouds, Call the Midwife, Shay the Dog and Miyako and Sidney Iowa, the cats, and music I hear, witness, and make.
The death of a very central being in our family — my mother-in-law — isn’t at all what I dreaded it would be, but instead a panoramic immersion in fierce and tender emotional states, all lit from within by love.
Each of the 25+ reading and workshop I did for my novel Miriam’s Well felt completely new and alive.
Ecstasy, or at least some dose of contentment and satisfaction, is readily available to me when I embrace the seasonal tilts here and now, whether driving up autumnal mountains in Vermont rich with goldening maples or looking up into the snow dazzling down in Kansas or walking to the edge of a peninsula on a cold day in Madison or sitting on a sweltering porch on a too-still summer day full of birdsong and cicada roar. It’s even available right now on a blank-sky day while the rain bounces off the deck outside and the cats sleep inside.
Sometimes a new friend is so obviously a life-long old friend that it’s a puzzlement to answer the question, “so how long have you two been friends?” (thinking of you, Laura), and sometimes an old friend chimes back for new discoveries (yup, you, Ravi). Related to this, the friends who hold my stories are godsends when it comes to reminding me where I came from, what I got through, and what freedom I inhabit right now to follow what calls.
Health and maintaining it is just about more everything that I imagined. Likewise, certain things (I’m looking at you, chocolate mega dessert) that used to embody great mouth joy can quickly trigger a Rube Goldberg-like chain of pain.
It’s an old adage to be careful with or lower our expectations, but I expect we can keep expecting gratitude and surprise, which leads me to share this poem from my new collection-in-the-works:
No One Tells You What to Expect
A downpour as you’re running down Massachusetts Street
in sandals that keep falling off in unexpected puddles.
Ice on power lines. The dying who won’t die,
then a single bluebird dead in your driveway.
The deadline or lost check spilling the orderly papers.
The part that isn’t made anymore for the carburetor,
or the sudden end of chronic sinus infections while lost
in a parking lot looking for where you parked the car.
Your best thinking won’t be enough to save your daughter
from a bad romance or your friend from leaving the man
she’ll regret leaving. Across town, in a quiet gathering
of maples, someone drops to her knees in such sadness
that even the hummingbirds buzz through unnoticed.
The dog you thought gone returns wet and hungry,
the phone call reports the CT scan is negative,
and your husband brings you a tiny strawberry,
the first or the last, growing in your backyard.
Life will right itself on the water when the right rocks come along,
so put down your paddle and let the bend tilt you
toward what comes next: the bottoms that fall out,
the shoes that drop, the wrong email sent while
a cousin you lost touch with decades ago calls,
his voice as familiar as the smell of pot roast
while that song you forgot returns like an old cat.
A few hours after the Tree of Life shooting, we clung to each other — singing, praying, crying — at the Beth Israel Center in Madison, WI. Family members, old and new friends, and synagogue goers — most of them elders, just like the people murdered in Pittsburgh while praying, gathered for a Miriam’s Well reading preceded by a Havdalah service, a 10-minute Saturday evening ritual to close the Sabbath and welcome the new week. But with the pain we carried from the worst anti-semitic attack in U.S. history, the braided Havdalah candle, the only light in the dark sanctuary, took on new, and unfortunately for us (a people targeted throughout history for annihilation) old meaning.
Later that night, my friend Mary Ellen, who was among us, wrote me, “I keep thinking about the Mr. Rogers quote about what can we do when bad things happen to feel better. He said ‘Look for the helpers”’ He might have meant the first responders, but I think it’s for all healers and folks who create. Maybe he should have said ‘Look for the Miriams.'” Given that the shooting happened in Fred Rogers’ neighborhood, this is all the more appropriate.
Miriam — storied in the Torah and ample midrash (interpretations in prose, poetry, and other arts) — leads us singing and dancing in the desert of our times no matter where we wander and for how long. She also carries a stone she can turn into a well to allow the refugee Jews to water their animals and grow food, which in turn, provides sustenance and survival. How this works, as Naomi in my novel tells Miriam, isn’t clear, “But healing is always a mystery, isn’t it?”
I see Miriam as one who feeds her people’s bodies and souls; all around me, I see many Miriams. Our long-time friend Sue not only hosted us and prepared a beautiful spread of desserts from the novel (rugalah, lemon bars, carrot cake and more), but as regularly as most people breathe, she serves her community, from making food for mourners, to bravely heading off to Shabbat services just minutes after she heard of the shooting. Marty, our administrative director at our local Jewish synagogue, brings great presence, calm, and love to wherever task she does and room she enters. My sister-in-law Karen spends several weekends each month taking care of our mother-in-law, baking her favorite pie with her, making stews and inviting us to come eat too. Kelley sings for people across the country, lending her voice and being to many benefits, embodying one of the songs we co-wrote, “You Gotta Be the Vessel.” My daughter Natalie, who fiercely supports people under attack, whether because they’re of color, trans, or suffering from mental illness, posted this on Facebook after the attacks: “My heart aches with you. But even through my grief, I am HERE for you. May this horrific event unify us as a community and make us stronger!” I could go on for not just inches of text, but yards and even miles about all the Miriams in plain sight.
Our communities themselves can also enact Miriam or Mary or Lakshmi or other symbol of Tikkun Olam — rebuilding the broken world — through coming together in vigil, action, witnessing, and change-making. Moving forward as a people, a nation, a world requires all of us to find our innate Miriams from whatever our traditions: Jewish, Muslim, Christian, Hindu, Buddhist, spiritual, religious, or communal. WWJD is one light to follow, and there are many more beings of light, mythic and/or historic, long gone or right here among us.
People have an amazing capacity to come together in song, prayer, and tears, but also, afterwards, in keeping on keeping on. Within minutes of the Havdalah service ending, I started reading from Miriam’s Well, and we began laughing. The heightened moment and this audience’s visceral understanding of Miriam as well as the New York City subway system, the 1965 blackout, and other nuances of history, amplified everyone’s responses. Life calls on us to come together, make something greater than the sum of our seemingly separate selves, and together make our way toward the light: peace, justice, respect, homecoming. Healing may be mysterious, but it rarely happens by accident.
Look for the Miriams, whoever she is to or within you, and make of your life your own braided candle to light and hold high.
Special thanks to Elissa Pollack for arranging this event and to Beth Copelovitch for leading the Havdalah services
What does Right Livelihood mean in the context of TLA? How does it relate to finding and staying in conversation with our life’s work while keeping the cupboards and gas tank full as well as caring for our health, art, soul, and community?
Laura Packer and Caryn Mirriam-Goldberg, between them, have decades of experience. Laura has been supporting herself as a storyteller, writer, consultant and coach for more than ten years. They have teamed up to develop the Right Livelihood Professional Training, launching in June of this year. This 100-hour training kicks off with a long weekend at the beautiful Unity Village retreat center in Kansas City, followed by a 12-week online class, and weekly video conferencing with the likes of Harriet Lerner, Charles Eisenstein, Gregory Levoy, Patti Digh and other luminaries in the field. More about this comprehensive training to help you make a living doing what you love here.
Caryn Mirriam-Goldberg: When I was growing up, I had no idea how a poet would make a living, and although people pushed me toward journalism and advertising, it didn’t stick. I was made to make things, especially out of words.
Now I make a living in ways that didn’t even exist when I was a teenage poet: I teach in a low-residency master’s program at Goddard College, traveling from Kansas to Vermont twice each year to work with students intensively in designing and implementing their individualized studies and facilitate community writing workshops for many populations, particularly for people living with serious illness. I love what happens when mortality is at the table, and we speak, listen and write from our souls. I give talks, workshops and readings through the Kansas Humanities Council and University of Kansas Osher Institute, and mostly on my own, conversing deeply with audiences on everything from poetry and wild weather to oral histories of people who survived the Holocaust. My work is a kaleidoscope of gigs and teaching, mentoring and consulting, driving across the plains in the bright light of early spring and occasionally flying over the green wonder of the mountains surrounding Lake Champlain to land again in Vermont.
What is your work, Laura, and how did you find your way to it?
Laura Packer: While I was pursuing my degree in Folklore and Mythology I had a lot of people tell me to practice saying, “Would you like fries with that?” I ignored them and persevered. Truthfully, I didn’t know what I was going to do with the degree, I just knew that I loved stories and that my work lay in that direction.
I met the man who would become my mentor when I was 19. He was telling stories and, as I listened, I knew that this was my path. It took me awhile to realize I would have to build the path myself. I worked part time for many years while I pursued my craft, but now I support myself doing a wide range of things that all fall under the umbrella of storytelling. I perform around the world to a wide range of audiences. I’ve told stories in pre-school, at festivals, universities, homes and so on. I teach, running workshops and coaching people ranging from storytellers to CEOs to parents to marketers to non-profit professionals and more. I work with organizations, both for- and non-profit, helping them understand and refine the stories they tell. I give keynotes and lead workshops at conferences. And I write, blogging about storytelling and taking on freelance assignments from a wide variety of clients.
It’s never boring. It’s sometimes hard to keep track of. I am always learning, hearing new stories and remembering that the work I do matters. Everything I do, as diverse as it is, touches upon story and the ways that our stories matter. I know that the work I do supports me both financially and spiritually. I also know that the work I do helps others. It is the right path and one it’s been fascinating to create.
Caryn, I’m wondering about the work you do with TLA and what that has to do with right livelihood. For that matter, could you explain what right livelihood means to you?
CMG: When I first heard about the term “right livelihood”—at Goddard College during a session on making a living true to ourselves—it chimed in me as something I had been seeking for myself and my community for a long time. After being thrown out of journalism school (the extremes we will go to so we can land in the right place!), I earned my BA in labor history, drawing on my concern since I was a teen about how our work lives infuse the whole of our lives. What we “do” colors not just our workaday life but how perceive ourselves, our communities, our world, and our potential to change. If your work entails saying, “Would you like fries with that?” on regular basis, it’s likely that being a fast-food worker shapes your identity, sense of self and what’s possible for you, and even your belief about what kind of work you’re entailed to do in your life.
Right livelihood is a Buddhist term, part of Buddha’s eightfold path (which also includes right speech, another TLA concept in my mind), and it connotes work that does no harm. Stretched out, the term points toward work (both vocation and avocation, for pay and just because it feels like our work) that serves, including conversing with our own callings as well as our community’s calling.
I didn’t realize when I was studying labor history, and later working as a labor organizer and reporter—all the time writing and reading and breathing poetry—that all would converge into my own right livelihood. As a transformative language artist, I draw on the power of our words aloud and on the page, solo and choral, to herd us toward greater health, vibrancy, liberation, and connection with the living world. My work—both at Goddard as a faculty member and coordinator of TLA, and as a working artist facilitating brave spaces for others to find more of their own voices and visions—is how I practice my right livelihood. All of this aligns me with the continual conversation with a calling, but it’s also work that, at best, helps others articulate more of their own truest work in the world. In the Brave Voice writing and singing retreats I co-lead with singer-songwriter Kelley Hunt, we fly on the assumption that opening your voice in one way cannot help but strengthen your voice in your whole life, and I’ve witnessed many people making courageous leaps into who they already were and what they now need to do.
Laura, is that how it is for you too as a performer, teacher, mentor, and writer as well as someone I would call a fellow transformative language artist?
LP: Caryn, you hit the nail right on the head. Right livelihood means work that enlivens and enriches us thoroughly, from fiscal health to spiritual health and beyond. It’s work that nourishes our spirits as well as our bodies and allows us to function as contributing members of a larger community, which is what artists are.
When I remember the value of my work in that larger picture, as someone who brings something powerful to a community as well as enriching my own life, it’s easier for me to be able to charge appropriately, advocate for myself and remember that what I do, as well as all other artists, matters.
CMG: Absolutely! I think part of this work, to really put the “right” into “right livelihood,” entails making paths for and sometimes with other artists. Little makes me as happy as seeing someone I helped mentor come out with a first book or start giving writing workshops in their communities.
Laura, you’ve talked with me before about the importance of charging what we’re worth as a way to honor those who come after us. The whole issue of what to charge, and how to ask for what our work is worth, is challenging and variable for me. I’ll do some things for hardly anything or for free, and other things for a livable stipend, yet negotiations can encompass lots of gray areas. I find our system of working this out to be awkward: an organization will often not say what it can afford until I suggest an amount. I often present what I charge as a range from the lowest I’m willing to accept to the highest I believe I should be paid, and if it’s something I really feel is mine to do, I try to convey that I’m open to negotiation.
Of course, all these issues speak to our cultural tendency to soil our money relationship with shame, privilege, hurt, defensiveness and other difficult guests to host. I’ve had a lot of help along the way to ask for what my work is worth, even and especially as a poet. Once a representation of an organization I was working with told me, a few hours before my gig there, that they didn’t have enough in the budget to pay me what we agreed on, so would I take a cut in pay? The musician I was collaborating with wasn’t asked to take a cut, so we talked this over, and together told the organization, “no,” but it was eye-opening for me, re-affirming my bias against myself that poets don’t get paid or paid much. Having someone stand tall with me helped me to challenge my self- and poet-destructive thinking, and hopefully, as time goes on, may have some effect for others too.
How do you navigate all this?
LP: Oh, this is a hard one! I feel like I don’t navigate it well much of the time, but I do the best I can, which is all any of us can do. Money is such a taboo subject, I try to understand my own prejudices and fears as well as talk about it, so it becomes less taboo. I use several tools to help me think and talk about money.
First, I talk with my colleagues about what they charge. If we remove some of the secrecy, we can all charge a living wage AND put a dent in the cultural idea that transformative language art should be cheap and that those who hire us should pay us less than they would their caterer, organizer, musician or others. It’s related to your experience with being asked to take a pay cut when your musician friend was not; if we charge a reasonable amount and know that we aren’t pricing ourselves out of range of our colleagues but in alliance with them, it can be easier to ask for. Additionally, by talking about it with my colleagues we get to remind ourselves that we are charging for far more than the 30 or 60 minute event, but for all of the time and experience that lies behind it.
Second, I do what you do. I often give the representative a range of cost and then remind them that this is how I make their living. I also tell them that I am open to negotiation (if I am).
Third, if I give work away for free or at a greatly reduced cost, I always give an invoice that reflects what I would have wanted to be paid. This helps lay groundwork that what I, and other TLA artists do, is valuable and worth paying for.
Fourth and last, I remember what a wise friend said to me, when I asked him money questions. He told me, “You can always negotiate down, you can’t negotiate up. Think about what you want and then ask for double.” I don’t do it quite this way (asking for double feels too bold for me) but I do ask for what I want and a little more. I can lower my rate, shorten the event, barter for other services but once I’ve set a price I can’t really come back and ask for more unless they ask for more service first.
When I remember to financially value my own work I am not only telling myself that what I do is worthwhile, I am also telling the rest of the world that art matters.
CMG: That’s very wise advice, and I love the idea of the invoice for what this is worth. There’s something magical about saying on paper “this is what my work is worth” when it comes to inviting in more lucrative work to balance out what we feel drawn to give away.
I’ve been thinking of what I do for free lately because in the last few months. I have one project that I’m grappling with because it’s sort of a “closure” project with a group of people, a way to share some social capital after working with this group for many years in the past. In the long run, I know this project is what I should be doing, but it’s sometimes difficult to balance the volunteer work with the paid work and still have time (not!) to write.
I’ve also been editing a book for a wonderful poet in his dying days, and that’s a sweetheart labor of love through and through. It’s an immersion in grace to be able to do this for someone I love and whose poetry is so important to share with others who can find a lot of sustenance in what he has to say about death, dying and life.
Often though, it’s hard for me to know the impact of my work and if I’m making the best decisions about where to put my time. My husband, also a writer and grassroots organizer, and I often joke as we’re falling asleep that we won’t know the impact of our work until after we’re dead, and I think that’s true. We don’t know, and this makes think of a stanza in one of my favorite Rumi poems:
If you are here unfaithfully with us,
you’re causing terrible damage.
If you’ve opened your loving to God’s love,
you’re helping people you don’t know
and have never seen.
So maybe all we can do is to try to be faithful in being here with our people, which also means being faithful to ourselves, and through our work and being, open our hearts (whether we use phrase like “God’s love” or not in describing this) to dropping our pebble in the pond and hoping for the best for what ripples we make and receive.
TLA involves bringing together people to make greater meaning and unearth greater vitality in how we live. It helps us find—through our words, images, rhythms—our work in this life. Mary Oliver said in one of her poems, “My work is loving the world,” and I feel the same. What I actually do for a living and beyond is just a form of that ritual: practicing how to love the world.