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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A Letter From the Post-Pandemic Future: Everyday Magic, Day 1004

Dear You,

Yes, I hear you knocking on my door at all hours of the day and especially night, calling me out of my sleep because you’re not getting enough of your own. You want to know what will be, how it will happen, and especially when. Fair enough questions given that you’re human, and humans can’t help but to desperately want some ground under their dainty or lumbering feet, a sense of control so they can puzzle together some steadying vision of what they believe will happen. You’re planners, all of you to some extent, and you like to think your plans matter.

So here’s the deal: I can’t tell you how you leap from here to there or how high you’ll have to jump to make that leap because this isn’t a situation of you being able to soar high enough on your own volition to aim yourself toward a pre-designated target. Besides, it usually doesn’t work out well for the future to be too chatty about itself with the present. But what I can tell you is this:

  • Be where you need to be. For most of you, that means home or whatever approximates home for now. Some of you go out to work in hospitals, grocery stores or gas stations, and that’s, as they say, essential work, but if you have an option to work, worship, meet and otherwise gather from home, believe me (and I should know) that you’ll be glad you took that option in the long run.
  • Many of you — I’m eyeing you, America — really don’t like being told what to do and not do, where to go and not go. Please, for the sake of my time, get over yourself. No one is ripping away your liberty or free will, just tilting you toward using it to discover greater freedom and possibility at home. You are completely free to clean out that drawer in the kitchen that holds everything from extra screws to old sunglasses. You can discipline yourself to create a new wall hanging out of scraps of fabric or a new garden bed. There’s plenty you have dominion over.
  • At the same time, this is a pandemic, not an all-expenses-paid creative retreat. If can’t do more today than make some microwave popcorn and stare out your window at a pair of cardinals, that’s okay. You’re not going to regret the days that don’t register on your old scales of productivity. You will regret driving yourself crazy to win the pandemic self-improvement sweepstakes, so don’t even enter. Create what comes to you. Sleep enough now (believe me, there will be a lot of new work ahead when you get to my time). Take good care of your body and soul, and if you live with others, your housemates or pets too.
  • Accept that you have many shifting behavioral and emotional strategies and phases to cycle through, and you don’t all do this the same way at the same time. Try not to judge your brother-in-law for practicing for a marathon while the only marathon in your life involves Netflix. If someone judges you, tell them to back the #$% off, but say it nicer — this isn’t a time to escalate tensions. One other thing: make your bed. That’s something you can do to put some semblance of order into your day from the get-go.
  • Some of you are suffering tremendously. Maybe you’re sick with something that’s different or the same as Corvid-19. Maybe you’re terrified of dying or of losing someone. Maybe you’ve already lost a beloved, or you’re climbing out of a close brush with death. Many of you are losing income, and the unemployment checks haven’t started trickling in. Or you might be on the cusp of losing a job, health insurance, and other necessary supports. Some of you (maybe all at moments) are swallowed up in dread, despair, and anxiety for stretches. All I can tell you is that this is horrendous, I’m so sorry, and I wish I could do something for you back in what’s my past. But I can also tell you this: hang on, Sloopy, hang on. That’s because….
  • This future — and I know I’m biased here — is very promising. Many of you are already opening your hearts wider than you have in some time, helping others with donations, prayers, plans and tools. You have incredible potential to change yourself, and with you the world, for the better by just learning to stay. Sit tight without trying to impose your will or ideas of what your life is supposed to be on yourself and others. The more you do this solo, the more you learn how to do this together, household by household, community by community.
  • Also, listen to the real science (the more of us who do this, the better for the future). It will enhance your ability to be guided by reality in other aspects of your life too. At the same time, protect yourself from whatever news overwhelms you or sensationalizes reality. Take news fasts when needed or ask someone close to you to update you on anything vital you need to know about the real science and reality of where you are.
  • This is the spring and beyond of being much more than doing. Listen to the birds. Pet the cat. Take notice of that shining pale blue that holds all the trees in such grace. Marvel at the lilac, and this year, you have the time to smell them and even get down on the ground to smell lily-of-the-valley. Listen to your favorite singer streaming an old song about when you first fell in love. Cry at the end of “Casablanca” and laugh at “Ferris Bueller.” Call your grieving friend. Zoom with your lonely mom. Text your unemployed niece back and forth about cool movies she likes. But also get in touch with yourself: who you are (whatever that means) without decking yourself out in the story you don each day about who you’re supposed to be.
  • One other thing to remember: you can’t see the whole story until you get to the end of it. Yes, this pandemic absolutely has an ending, and most likely, you’re okay there and then, even if a little older, sadder, and wiser. When you get well past the arc of this story, you’ll see what the arc was, not just for our planet but for your own precious life. Especially, you’ll know heart-to-heart more about the preciousness of this gift, this life

Hey, kiddo, please also remember that I believe (and depend) on you.

With love always, the future

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Walking With Courage, Vulnerability, and Tenderness: Everyday Magic, Day 1,001

Amazingly enough, we are arrived at the last day of March, a month that has lasted at least 1,283 days in fear, panic, and dread years. But here we are, and as April — what T.S. once called the cruelest month — approaches, we know we’re in for a far longer, harder, and more unimaginable month with the virus likely peaking over the coming weeks.

Walking — our new and only in-person social life of late — with our son Forest through East Lawrence the other day, I asked him what the word was for the world looking one way while it’s also a drastically different world at the same time. We were ambling past heartbreakingly beautiful manifestations of spring — magnolia trees loaded with pink boats of blossom, tender green just-leafing trees, and a gala of daffodils, hyacinths, and even some early scout redbuds showing off like the main attractions they are. Forest thought for a moment, then said the word I was looking for was dissonance, that anxious tension from two disharmonious elements.

The numbers of people with Covid-19 are rising exponentially, more and more people are dying, medical supplies are running out, and the map in the New York Times I check (with bated breath) every few days looks like the country has a bad case of chicken pox and rampant poison ivy all at once. At the same time, the birds are singing in overlapping and ever-shifting harmonies even if some of their song is about holding onto their territory and driving out invaders. The peach tree in our backyard blossoms in its usual aching beauty. Spring seems far more beautiful and far-reaching in its volume, and even the soft glow of the air, maybe because I’m paying more attention or, more than ever, this is the renewal I need each morning when I wake up, to paraphrase Rumi, scared and empty.

We’re in a time when there’s likely not enough anti-anxiety meds or slow meditative breaths to lift any aware person completely out of feeling some of the vast uncertainty, fear, and suffering happening throughout the world. There’s obviously only vague maps and best-guessed timelines ahead, although we humans cling to patterns and answers. Yet when I pass people on walks in the wetlands or through various neighborhoods, all us carefully keeping at least six feet apart, there’s a tenderness, even among strangers. “Hey, how are you doing?” people will call out, or they’ll just smile and send wishes to stay healthy.

“You can’t get to courage without walking through vulnerability,” Brene Brown tells us. We are growing our courage to get out of bed, unsure what bad news will land today and what beloveds of ours (including ourselves) might be threatened, hurt, or just very afraid. We find our feet and begin walking through our days, our hearts open and trembling like the vulnerable and courageous creatures we are.

So it’s step by step — the living room to the kitchen, the front door to the backyard, the trail a few feet or miles away, and of course, wandering through what fear, foreboding, or other difficult emotions grip us while we make a meatloaf, pet the dog, call our mother or child or friend, to try to fall asleep. It’s movie by movie, dishwashing by dishwashing, laundry by laundry. But wherever we are in our internal landscape, we can always take the next baby step with courage, vulnerability, and tenderness.

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Dear Me: Stop Freaking Out: Everyday Magic, Day 999

Dear Me (and Dear Me!),

I know you’re crazy-scared about the coronavirus. How could anyone paying attention not be when the closings and cancellations fall like dominos. Just in the last day, many universities in your state cancelled in-person classes, events on your calendar vanished in a wisp of precaution, and your synagogue called off services. In an age when even a minyan (Jewish term for the minimum number of Jews to be present for formal worship) is a risk, it’s hard to turn away from the ticker tape parade across the frontal lobe that keeps blaring, “The world is ending!”

After the agony too, the laundry

Actually, it’s just the world we know in the ways we expect it to be based on how it’s been rollicking along for a while. Your son was videoconferencing with his friend in China last night, who lives one province over from the virus epicenter, and they were laughing and catching up. A Facebook friend in Italy posts about the beyond-imagined new normal and how they’re hanging out at home, watching movies, making food, taking short walks, and worrying about loved ones with the virus.

Moreover, this moment — while certainly unique in most or all of our lifetimes — is another one of many ongoing overwhelming threats to human life and activity along with climate change, poverty, hunger, homelessness, and so much more. While we’re in an expansive rift, let us also mention the reality that we are all exceedingly mortal and can control only a fraction of what happens to us.

Telescoping in to what might be in your purview, it’s not a good time to think about your retirement investments, and yes, some of your gigs are called off, but please don’t go down this rabbit hole because you, along with a lot of people you know, are likely going to be fine and will have the resources you need. You have good health insurance, you live in a lovely home in the country with fields and woods to traverse, and you can afford to stock the pantry. You’re also abundantly outfitted with books, art supplies, sewing projects, movies, and animals. Oh, and you have the phone and internet, and already, you’ve been visiting deeply with lots of friends more even if the conversation is often punctuated with “I’m scared too.”

So many people, close around you and scattered around the world, do not have such a safety net. You can pray, send good wishes, and contribute money here and there, but consider what else you can do. Your son’s idea to contact neighbors and make connections so that, as needed, we can run errands for each other is a good one. It’s also important to contemplate little, quiet fundraising efforts for people who will lose most of their income. What else can you do? As for everything and especially this thing, more will be revealed in time.

So why, little trembling darling, are you still so anxious? Of course, telling yourself you need to be less freaked out right now so that your emotions don’t diminish your immune system isn’t going to get you anywhere either. Panicky urgency should not be given the keys to drive the bus right now. Instead, I want you to consider this:

  • Right now, no one you know is sick and suffering with this virus, and while that’s likely to change, it would do you good to dwell in the present. Speaking of which….
  • Right now, the pale blue-to-white sky is as soft as the warming air. The peas and carrots you planted in the garden on Sunday are germinating in that rich dirt after rain saturated everything. The fields are just on the verge of going from washed out tans and browns to scribbled-in exuberant green.
  • Right now, you have a cat asleep near your feet and a dog asleep (although looking at your quizzically) by your side. They fear nothing.
  • Right now, there are deer in the woods walking gingerly up the hill. There are happy rabbits regrouping with their buddies for the spring. Hibernating turtles stir underground. Early spring birds sing across the airwaves. Here we are in an unfurling world beyond the reach of headlines and soundbites.
  • What we worry about happening usually bears no resemblance to what happens. If and when you or loved ones get sick, as a zen master pal of yours said today, you’ll be okay even if you can’t imagine what okay is or how it might play out. Or you’ll not be okay, and that’s okay too.
  • Most of all, know that while you can’t do anything to stop a viral pandemic, you can do something about your airspace in the pandemic of fear. When you get scared, get off your bum, walk outside, and take a long, deep breath. Go hang some laundry and feel the wind lifting and dropping all around us. The world is infinitely larger than the scaredy cat meowing inside you. Take another breath. Then another.

Love, me

Prayer for the New Year & Bonus Posts: Everyday Magic, Day 993

Although 2020 is already underfoot, this is my first blog post of the year, and it’s the first post that will go out to all of you who are subscribers since sometime in October when my website had some issues. Thanks to my soul brother Ravi’s generous time and ample wisdom, the sight is fully rehabbed, including automatic emails going out to subscribers again. So here’s a poem for the new year (an oldie but still relevant) and links to any posts you may have missed. I wish everyone and our world at large the peace that surpasses understanding and the courage to address what’s most broken in our lives and on our planet.

Prayer for the New Year

Let the blankets hold the shapes of our sleeping

all the dreams long. Let the cat on the dog’s bed

move over enough for the dog. Let the snow,

gathered tight to the afternoon sky, relax its grip

and show us the white contours of the new world.

Let the last one to leave the room close the lights

and the first one to rise make the coffee.

Let the sorrow we carry unfurl enough to reveal

its story’s ending, whether that ending is upon us

or still to come. Let the windows hold the pink gold

of the just-rising sun and the infinite blue darkening

of the rising night. Let the flowers and stones

make their ways to the gravestones of those we love

who left but never left, no matter how tender

the pain of their imprint. Let the flowers and stones

we collect to carry in our pockets and books

remind us of all that cycles its beauty through

the gift of this life. Let the quietest clearing

in prairie or woods, party of one or crowd of crows

land us exactly where we are. Let the rain come

and our unexpected shimmeying and leaping

alone in the living room. As well, let come

the storm warnings with time enough to find

a basement, the silver light of the winter horizon,

the blue light of everyday, whether we can see it

or not. Let us remember that we are not

who we think we are but only and at last

canoes on the river of light and cooling water.

Let us paddle hard when the current switches,

and put down the paddle when the moon’s face

shines before us, below as above. Let us trust

that we will always be led where we need to go.

Previously published in Chasing Weather: Tornadoes, Tempests, and Thunderous Skies, my book with photographer Stephen Locke

Bonus Posts:

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