Oh, For the Relief of Pain!: Everyday Magic, Day 977

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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“God’s Got You, Baby”: Everyday Magic, Day 976

The lovely view from the porch where I’m spending most of my waking time.

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.

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Back at the Cancer Rodeo: Everyday Magic, Day 972

Self-Portrait With Rainbow & New Cancer Diagnosis

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.

The view from here

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.

 

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Blown Away: Everyday Magic, Day 968

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.

Surprises From 2018: Everyday Magic, Day 960

“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

Surprises around the bend

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.

Expect to be startled.