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.

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What’s So Good About Being Sick? Everyday Magic 895

Sometimes the body says, “Stop!” in the most eloquent language it can, a slim intuition that lands sweetly in the center of our attention, and gently redirects us. Other times, particularly with people like me who tend to pack in, pile on, and shoehorn in too much on occasion, the body speaks with far more force and dread. Welcome to my little cycle of illness lately, a not-horrible-not-great cold that turned into an ear infection that triggered two weeks of dizzying vertigo (and driving around with bottles of ginger ale in easy reach) ,then opened into a terrible-you’re-not-leaving-the-house and cold-medicine-hardly-touches this kind of cold. It’s a little like the Rube Goldberg contraption of an illness.

Now that I’m emerging, enough to wander some aisles of Home Depot without lurching for my bed, I’ve been thinking about what’s so good about being sick. As someone with a talent for picking up poetic inspiration, and viruses, I should know already, but when the chips are down, I immediately have to negotiate with the crazy things my mind tells me, which range from “Oh no! The world is ending!” to “This is all your fault.” Luckily, a good bout of illness is a great leveler, and a few days of lying around, mildly hallucinating in between downing wellness capsules and Tylenol usually sets me right again.

Getting sick isn’t what I think it is even if it does necessitate missing a conference and concert. It just is. When I think of the people I work with who have truly serious and chronic illness at Turning Point, I see this up close. Some of us are dealt very difficult hands in this life through no fault of our own: M.S. or metastatic cancer, or Parkinson’s or brain injury. There’s a lot to be said about what’s bad in such cases, but judging oneself for coming down with some rare neurological disorder isn’t helpful or appropriate. While a bad cold is a drop in the ocean compared to such serious illnesses, I remind myself that illness is a perfect time to put judgments on the shelf for a bit. Of course this can go too far at moments (Eating too many cookies? What the hell! I’m sick!), but overall, having the pause button hit on my life is just that: a time to stop, take care, burrow into the blankets, practice slower breathing, and catch up on some old movies.

I know it’s dualistic and limiting thinking to label things good or bad — my friend Stephen often reminds me, “Bad news….good news, good news…..bad news.” We don’t often know what we’re getting into or what it means right off the bat, so along those lines, I would say that having to travel only from bed to chair with a good supplies of tissues and cough drops isn’t a horrible thing. Sure, I felt horrible, but then I remember how time and my bodies are remarkable, shifting from one thing to another with surprising grace even if I’m kicking and screaming all the way.

So what’s so good about getting sick?  I grow my compassion a quarter inch more for people who deal with much worse stuff more of the time (“Worse things have happened to nicer people,” my friend Linda remarked the other day). I fall in love a drop more with the purpling clouds, right now, banked over the setting sun. I spend a whole lot more time with my animals, lounging in our small herd on couches or beds. I get to be and be still. And I get to get well.

Turning Point, the Writers Place, the Lied Center and Some Great Barbeque: Everyday Magic, Day 618

Play it forward — in our words sung, written and spoken — swayed through my Sunday for  people I work with as well as me, myself and I. The whirlwind double-header started with a reading at The Writers Place in Kansas City, featuring people living with or caring for someone living with serious illness. The 18 writers were all participants in the workshops I’ve been facilitating over recent years at Turning Point: The Center for Hope & Healing, one of the greatest centers for modeling how to survive serious illness with meaning, dignity and even delight.

I was so proud of the writers, who shared powerful prose and poetry about how impossible it is to find the opposite of alone when you lose your partner of 47 years, the miraculous gifts of a horrendous illness written by a mother about her young adult daughter, and what leaving cancer statistics in the dust looks like nine years after a terminal diagnosis. One man used the mesh model of his head and neck — part of his radiation treatment for parotid cancer — complete with KU ball cap — as the visual to accompany his poem about the hard truths and sweet gifts of survival and perfect peaches. A young woman had me read aloud the poem she wrote on what she learned from her young son, who passed away in May. A man told us about the ridicule he endured because of his illness and strength he found in spiritual gifts.

What people read wasn’t just about living with or surviving MS, cancer, Parkinson’s Disease and other chronic illness, or about taking care of someone in the grips of the impossible. People read poems in praise of the ex-husbands who surprise us, the grandchildren who complete our lives, the old love that shows us the way. Life, stripped of any pretense, was front and center in this reading, and who better to celebrate being alive that people who know intimately what mortality means?

After the reading, and the taking of many pictures (along the eating of many grapes), I took the poetry van (looks like hell, runs great) back to Lawrence, just in time for for a sound check with Kelley Hunt before we performed a short performance for the Friends of the Lied Annual Dinner at KU’s Lied Center. We also got to eat some rather spectacular Biggs BBQ, which absolutely ensured our best effort.

Reading poetry (me) and singing while playing piano (Kelley) in the Pavillon room was a special treat. The space is acoustic nirvana, and as I read, I could see both the shining faces of 150 or so wonderful Lied friends as well as the wind winding through the leaves of cottonwoods outside through the wall of windows. “Play It Forward in Music & Poetry” was Kelley and my newest collaboration, featuring a spanking new song, “Let It Rain,” which is all about passing on what we’re given. “It was all given to you/ Now who will you give it to?” Kelley sang, one of my favorite new lines that came to us.

Lying in bed late last night, the day swam through my heart, lifting it to the starlight as I thought to myself, “I get to do this for a living.” Not just to pay it forward, but to play it forward, with all the added joy implied.

Pictures: Our sparkling Turning Point readers and friends/family: top photo: Cathy, Peggy, me, Dee, Debby, Megan and Lou; Earle & Lois; Will and Stacey; Carol.