Cancer Anniversary: From a Personal Pandemic to a Global One: Everyday Magic, Day 1005

A year ago today, pacing an empty parking lot, I cried so hard on the phone with my friend Kelley that it was hard to get the words out: “I have cancer. In my eye. I’m so scared.” Ken was racing back from Topeka to meet me after my two hours of scans at the ophthalmologist’s office. My right’s eye blurry eyesight wasn’t a minor glitch in this body’s solar system, but a large asteroid crashing through whatever semblance I had of calm, whatever thoughts I had of being safe.

Thus began my personal pandemic with its the customary WTF? phone calls, bouts of fear storms, and a lot of clearing of the calendar. The next day was far worse when my new ocular oncologist said it could be a melanoma but it was more likely a brain tumor. “Let’s hope for the melanoma then,” I said. She shook her head, “They’re both bad!” The interim between that moment — a few hours of more scans in between pacing the waiting room with Ken and my brother Ravi — and the oncologist confirming it was a treatable melanoma was terrifying. But when we got home that day, the sky took on a new sheen: a rainbow to the east, and it was enough.

I thought my life would be briefly interrupted and not changed all that much, but just like my breast cancer road trip 17 years earlier, it took many months and knocked over many plans, notions, and habits. I would have many more scans and tests, a radiation implant in my eye that would require two major surgeries, and a whole lot of time enveloped in hurt and anxiety. That summer, I hardly left the house except to visit a doctor or my therapist, donning two pairs of sunglasses and often a towel over my head because light hurt (obviously, I wasn’t driving). Eventually, I healed, and although my right eye is far past legally blind and I still can’t open it completely, I’m okay. The changes put in motion are still unfolding, and that’s okay too.

While the word “pandemic” refers to a global epidemic, for me and for any of us who go through such mortality-laced journeys, it sure felt like my whole world was in crisis. To ensure healing and safety, I was in home lock-down much of the time. The economy of Caryn World also tripped into the ground and stayed there for a while with lost income and, even with decent health insurance, thousands of dollars of medical bills. But lucky for me — and lucky for all of us right now — I could choose to surrender to what I needed to do based on the best science and medicine available.

Yes, a global pandemic is unprecedented in our lifetimes, but most if not all of us have lived through the world as we know it dissolving under our feet in a flash. Having the rug pulled out due to serious illness, death, heartbreak, and all manner of other very human challenges is part and parcel of being alive. We think we’re living one story, and poof! Suddenly, it’s a good thing to have erasable gel pens for your calendar, some savings, and the ability to make good things out of our friend, the potato.

This comes home to me lately on Tuesday nights when, through Turning Point, I facilitate writing workshops for people living with serious illness. I started doing these workshops 18 years ago, fresh out of cancer #1, although now we’re meeting through Zoom instead of in-person. A little like a warped futuristic vision of the Brady Bunch, 18-21 of us write and listen our way to greater meaning, strength, and mutual understanding. Some are finding new ways to bake chocolate tortes, some are summoning the strength to get out of bed while irrevocably heartbroken by the loss of a spouse, and some are dealing with chronic pain or what bad news might be just around the next blood test or MRI.

We’re well-accustomed to the land of the personal pandemic, and a good many were unfazed by stay-at-home orders, which we’ve had to enact before for a few months or as a way of life after losing some of our immune system’s robustness or our body’s mobility. We know what it is to eat resilience for breakfast, aiming ourselves toward outlooks and activities that tilt open the door to some calm, some comfort, some joy. “Yeah, I don’t go to the store anyway,” a woman with a neurological disease told us. “I’ve hardly left my house for years,” someone else chimed in. Over years of living with illness and/or being a caregiver for a patient, many have learned how to “use it up, wear it out, make it do, or do without,” to quote Boyd K. Packer. No wonder we find great intrigue in the antics of squirrels or birds, growing flowers, baking bread, or other everyday resilience practices, readily available as we cross over the threshold of one room to another.

But it’s not just what people do in a personal pandemic: it’s very much how they frame the narrative, including the low dips, of their experience. Someone I’ll call Lulu has minimal energy because of her aggressive cancer, so she’s determined to make the best use of her time and energy left, using it to talk lovingly with her family and make special surprise boxes for her husband and daughter to find after she’s gone. “Bill” goes to his porch to breathe through the pain, focusing his attention on cardinals fighting it up in aerial dances. Lou (who has given me permission to use her name) wrote a book about her Vietnam nursing experience, where she was exposed to the Agent Orange that planted Parkinson’s in her; now she regularly speaks to veteran groups and community gatherings in between gardening and grandmothering, even if she’s a little off-balance some days.

This day, a year after my last personal pandemic showed up, we’re in the middle of a global pandemic, seven weeks in lockdown, but I take note of how many doors are still open, like one leading outside, where I plant some lilies or the door to my car which I can drive well enough with one eye to meet friends for socially-distant walks. As time passes, I even cross the threshold of not seeing my eye adventure as a loss because I keep learning how in any pandemic — personal or global — we have the ability to grow magic eyes that let us see our small worlds or the world-at-large in new ways.

Please consider supporting my writing and many other new projects by becoming a patron for as little as $3/month. Patrons get weekly care packages (by email) of writing prompts or inspirations, cool perks, and a writing guide just for you. Click here for more.

Where I Live: A New Year’s Moment: Everyday Magic, Day 986

I live down a winding and dipping gravel road, lately wet or puddled in its low parts because of underground springs and an abundantly rainy summer. Coming down this drive today after the long catapult from 4 a.m. in Paradise Valley, Arizona, to my son Forest’s car at the Kansas City airport, homecoming filled my lungs, eyes, and heart as we turned toward this house, supported and supporting this porch where I live. It’s a place of sudden sideways rain when the wind and humidity soar. I live here in this weather: changeable, dramatic, boring, shining, then surprising all in an afternoon.

I’ve always lived in the wind and sky. From my Brooklyn bedroom, upstairs in a narrow triplex somewhere in East Flatbush, I would lean out the window especially during storms, even remnants of hurricanes, just to feel that rush of air and rain on my face. In Arizona, where I had the delight to experience a bit of what they call monsoon season (and what call here an ordinary afternoon), I walked across the retreat center’s rock gardens in the big speed of wind and water until I arrived at a revelation there, for me at least, blossoming jasmine. That’s because I also live in the vivid scent of flowers: lilac, lavender, asiatic lilies, daffodils, hyacinth, wild roses and tumbles of domesticated roses, and particularly my favorite that brings me to my knees because they live close to the ground: lily-of-the-valley.

Like most of us, I live in my senses, and particularly this summer, sound made by the weaving, rising, falling, encompassing, and diminishing songs of cicadas, katydids, tree frogs, birds of many barks and trills. Right now, I lean into the sound of crickets. I live for a great meal when the lettuce from the farmer’s market meets the cucumbers from the garden beside a perfectly roasted sweet potato, grilled corn on the cob, and lemon-mustard-maple chicken. I live in the touch of my husband’s hand on the small of my back and how my daughter melts into me when we hug as well as the feel of the breeze at this moment on my forearms mixing with the air the ceiling fan spirals down. I find life in the vibrant purples of the morning glories and the deep gray-blues of the thunderhead’s edge, especially when the sun shines on or through either.

I live in this moment, then the next one. Yet sometimes a dozen tabs spring open in my mind of what I plan or imagine or what I think happened an hour or decade ago. I live in too much planning and not always enough remembering, a propensity to overly rely on what’s possible rather than what’s likely, and a whole lot of iced water to love sipping along the way. Encompassing so much of my life and work, I also live in writing, where I find my way free from all the biting critters in my mind and angular news inching or powering through the radio or what someones says to me in a parking lot. On the page and screen, I make things, and just doing that makes me feel as alive as I actually am.

I live here, right on the cusp of Rosh Hashana, the Jewish New Year, when we go from 5779 to 5780 at sunset. On the other side of sunset, I will be sitting, standing, davening, maybe even dancing a little, and afterwards, eating cookies with my tribe here. I will arrive at the start of a new and very old space to live, time and place always meeting at a precise, and if I remember to take in the miracle of life, luminous home. That’s where I live.

Please support my new writing, workshops, and a podcast series to come through my Patreon campaign. Get really cool perks, weekly inspirations, a writing guide, and much more.

What’s Right Livelihood Got To Do With It?: Everyday Magic, Day 966

I’ve been passionate about how the way we make livings speaks, argues with, or sings loud and proud through our lives. My first degree was in labor history because of how I was innately drawn to the often messy dilemma of work and life, and no surprise that over the years, I’ve returned to this question, especially when, decades ago, I stumbled across the Buddhist term “Right Livelihood.” I just wrote a piece on this along with callings and some ways to follow the work we love into fruition, published this morning on Medium — “Six Ways to Find the Work the You Love,”  that I’m sharing the link to right here.

What I wrote and what I’m living and learning is also very related to the Right Livelihood Professional Training I led for the first time last year with Laura Packer — the photo here features some of the cohort group in that training, meeting at the end of our intensive four months at the Power of Words conference at Goddard College in Vermont. This year, we’re doing it again, and I’m sharing the Medium article to help get out the word because of how much I believe in aligning ourselves with the work that calls to us.

Speaking from too much experience, I keep learning how not following the path we need to make (often by walking it) can lead to all kinds of soul chaos. I’ve left jobs and careers that didn’t work for me or made me sick or just felt all kinds of crazy-wrong, from working as a reporter to grassroots organizing to leaving volunteer positions that went against my values or wiped me out beyond exhaustion. I keep returning to the drawing board, literally lately as I’ve taken up drawing again (but that’s another story for the future) to find the what of the what, and I’m guessing this is a frequent-flyer endeavor for life. A calling, as I wrote about in the Medium article, is a lifelong conversation with lots of surprising dialogue behind and ahead.

Whatever our work is — whether a paid job, a bunch of gigs, volunteer and service work, making art or home or something of meaning — runs through the core of why we’re here. So let’s keep recovering, uncovering, and discovering that big and beautiful work of the soul!

P.S. Laura and I are doing Life and Livelihood Small Group coaching on March 23 — just 10 bucks for 90 minutes of asking your questions, discussing the curves and angles of how we find and make our best work, and meeting new friends. Details here.

 

 

Making Stuff Up From Mrs. Potato Head to Eat the Earth: Everyday Magic, Day 928

My cohort in making stuff up

What to call a fictional women’s collective running a potato farm in Moab, Utah in my novel Miriam’s Well? What else but “Mrs. Potato Head” (yes, the Mrs. instead of Ms. is an ironic touch, which fits the women’s sense of humor). Likewise, when naming a L.A. non-profit organization that trains inner-city teens to grow and cook  their own food, Miyako the cat and I came up with the name “Eat the Earth.” Because this novel retells a biblical story, that of the Exodus but from Miriam’s point-of-view and set in Contemporary America, I named a North Carolina ecovillage “Garden of Eden” and a utopian Idaho community “New Egypt.”

Such is the thrill of writing fiction: you get to make up all kinds of stuff, and name towns, organizations, and projects, not to mention characters, which is a little like naming our children. Sometimes the name came to me easily, and sometimes in a dream, glimpse, or great suggestion from a pal. Of course, there were also many real places, plucked from travel guides and web searches, because of their names, such as Maine’s Mount Desert Island where I placed the made-up Acadian Dream Inn, and Idaho’s East Hope, sporting a fictional restaurant with the slogan, “Eat and get out!”  I even got to dream up an arts parade to benefit a San Francisco hospice at the height of the AIDS crisis, titled “Soul Train,” and stealing heavily from my own experience of once organizing an arts parade in Lawrence which also featured marching existentialists who regularly called out questions like, “What about the children?” and “What does it all mean?”

Along with this, since the book has 35 pages of recipes, I got to make up meals, then track down recipes from wonderful cooks and bakers I know (thanks so much to Nancy O’Connor, Jayni and Frank Carey, Meg Heriford, Kris Hermanson, Lauren Pacheco, and Janet Majure) or write out my own made-up recipes. Of course, this entailed eating real food from fictional impulses, but that’s all for the good.

Now that the book is about to go the printer so it can mosey on out at the end of March, I’m doing another kind of making-stuff-up-as-I-go, organizing readings and workshops in various states and states of mind. Although we live in a time when the real is seemingly far weirder than fiction, it’s nice to know there’s ways to immerse ourselves in fiction that I hope brings new slants of light on more universal truths.

You can see a short video about the book at my Indiegogo page, another way to make things up by selling books in advance to help fund the book tour, right here.