Category Archives: Health

We’re All Such Delicate Creatures, But At Least We’re In Good Company: Everyday Magic, Day 895

Everyone I know has something hard to live or live with: the everyday heartbreak of going on when a greatly beloved is dead or gone, a scattering of demeaning jobs or not-so-sweet sweethearts, tunnels of depression or roller coasters of anxiety, or chronic illness or cumbersome disabilities. Maybe we’re hard-wired to have an Achilles heel, some weak spot named for Achilles of ancient Greek mythology whose mother, Thetis, dipped him into the Styx river to make him immortal. To keep hold of him, she held him by one heel, which became his vulnerable part.

My Achilles heel is chronic illness, mostly of the sinus-infection-whatever-mystery-virus-is-this-fresh-hell variety. While I’ve struggled since childhood with getting sick more than the average bear, ever since I went through cancer and chemotherapy, this vulnerability has gotten more airtime. I won’t bore you with the long list of conventional, alternative, cutting-edge and/or traditional treatments I’ve sought, and I’m certainly not asking for advice — I have what feels like a good and long-term treatment plan in place now that may lessen the and-she’s-down-again days, and I’m honored to be working with a great integrative physician. But there are days, like this one, when I’m limping around on my Achilles heel.

One problem with vulnerabilities, especially the chronic ones, is that it’s hard to get beyond self-blame, or at least, it’s hard for me. When I get sick, my first impulse is to scan my days for what I did wrong and to feel like I’m failing at life. But this is just the my thinking and thoughts, not reality. What is reality? I’m hardly ever completely sure, which I believe is kind of the essence of intersecting with reality, but I do know that life is far more mysterious than we can fathom. We don’t know what will happen, and by extension, what this symptom or that one truly means all the time. We don’t even know all the details of our life lessons, except that sometimes those lessons are relentless intensives. While I believe very much in the power of healing, and siren song of health, I also know it’s beyond my control to have the ultimate power to fix what ails me, or the world.

Just like I practice the cello, I can keep practicing health like all of us can keep practicing ways to live with our vulnerabilities. Some days, I’ll make a sweet note, and some days, it’ll sound like shit. I can keep aiming toward ideal wholeness, but I have to remember that I’m already whole because being being a little bit broken in some way or another (aka Leonard Cohen’s “There’s a crack in everything/ That’s how the light gets in) is what it means to be a whole human.

One of my favorite songs, “That’s What Makes You Strong” by Jessie Winchester, tells us how what makes us weak, what makes us need someone, is what makes us strong. “That’s what moves our souls, and that’s what makes us sing,” the song goes, and I love this version by my friend Kelley Hunt. We are moving mosaics composed of all the pieces, edgy or smooth.

What helps us grow courage and compassion is the everyday Achilles heels of our lives, reminding us that, yes, we are designed by nature to be delicate creatures, and yes, we are also called to work, play and live with the materials life gives us. There never was a river of immortality, just us humans, sharing our stories of falling down and rising down, and in the sharing, remembering that we’re never alone.

We’re Sick!: Everyday Magic, Day 891

We just had a thermometer contest: whoever had the most normal temperature won, and I lost. Both Ken and I have what’s likely a wicked incarnation of the flu despite earnest flu shots and sincerest wishes not to be lying on beds or couches for hours while our half-dreams bleed Excel spreadsheets into family members long gone into recipes for cakes made of fruit and abstract equations. First I came down with it, spending the weekend and much of today horizontal, then Ken caught up with me because when it comes to true love, misery really does love company.

The kitchen counter is full of various over-the-counter de-mucus-ers, the knightly Tami-flu, and each of one our own bottles of Recharge, a great electolyte-inflused drink without all the sugar of Gatorade. My plan to fly to Vermont tomorrow flew away very as quickly as my fever so now I have a re-booked flight for Thursday. And we just watcheimg_3062d one of the great films for any sick people (in addition to The Big Lebowski), Groundhog Day, taking special care to count all the days Bill Murray woke up again to Sonny and Cher (42 in the film although I researched how it would actually take over 8 years for him to be an expert at piano and ice-sculpting).

“Doesn’t it feel like you’re dying?” I asked Ken earlier. “Yes, that’s exactly how it feels,” he answered, leading us to ponder if, at the moment of death, we would remember this crazy strain of flu. Yet there’s also the living that goes on regardless, and little moments of gratitude in spite of headaches, body aches, sinus aches, sore throats, and crazy coughing tirades, like when we visited with friends via a phone conference in Columbia, MO. and Plainfield, VT. to compare notes about who’s got snow (one of us), who’s got the flu (three out of four of us), and whose crocus are blooming (three of us). Or when ate the incredible soup a friend brought over and re-affirmed the power of soup to change and save lives. We’ve found our fat cat trying to stuff himself into a small box hilarious as well as the new John Oliver “Last Week Tonight.” We’ve sprawled across our facing couches saying stupid things that made us laugh or fall asleep, and we’ve drunk tea.

When we’re hit by particularly uncomfortable and even painful illnesses, it’s easy to say what each of us have said: “how do I get through this?” But the answer, like the answer to any stretch of time, is that you just do, and since this is the deal, why not find between the squeezing and sleeping whatever specks of joy are all around?

Surviving with Gumption & Grace: Everyday Magic, Day 875

14570306_10154659715690159_959994163246427131_nToday, I had the honor of giving a keynote note at the Days of Caring event in Hays, Kansas — a luncheon and fashion show to raise awareness about breast cancer. Here’s the talk I gave, drawing on my experiences and writing as well as what I’ve been witnessed to witness through facilitating writing workshops and being with community. Thanks to Juno Ogle, who chaired the event and invited me to participate, and the others who made this happen (Brenda, Andrea, Donna and everyone one else). P.S. I also got to mosey on the catwalk in my first fashion show ever. Thankfully, I didn’t trip.

Surviving With Gumption and Grace

Your Life is Your Life

Know this when you must lie

completely still on the steel table

while the glass plate presses down

on your chest. Your life

obviously your life. Dream it back

into your memory for when

the kool-aid-colored chemo

is pumped into the plastic port

in your clavicle. Tell yourself

this when the doctor comes in

to talk with you, carrying

a small box of tissues. Don’t

forget then how your life is

your life, not when the phone rings

at the wrong time, or the biopsy needle

inserted in your left breast shoots

its click near your heart. Your life beats

loud and often. Your life

surges against itself

in at least some cells so tell it

your life is your life

when you sit, naked from

the waist up on the examining table.

Your life there talking with

the pharmacist or here on the couch

is your life. Pick it up

and hold it close

especially when the wait

is long and the news is bad.

Tell your life what it is.

I wrote this poem in the middle of my cancer when I was learning a whole lot about a word I didn’t know at the time: sisu. This Finnish word with no English translation loosely means grit, bravery, guts, resilience, perseverance, in short, all the spirit and imaginative courage of the word gumption. Grace speaks to that illusive quality of aligning ourselves with the blessings and sacredness of life. Altogether, gumption and grace names for me what it means to make and re-make our lives out of the materials we’ve been given. In my case, and for many of you too, cancer is part of what we work with, and no wonder given that the latest statistics indicated that one out of three of us will face some form of cancer.

How to grow gumption and grace in our hearts, lives and communities? One of the big things I learned through cancer – having it, being with loved ones who survived or didn’t, and facilitating writing workshops for people with cancer for many years – is how much we need to steer by our own feet and flashlights through dark times. Advice from others is often over-rated, especially when you face big decisions. So for the sake of this talk, I’m going tell you my story, aiming toward what lessons I learned about grace and gumption, with the caveat that your life is your life.

Listen to Your Story

“Everything can be survived if it’s part of a story” goes an old Yiddish proverb. Our cancer tells its own tale as we live our own much-larger-than-just-cancer story, intermingled narratives that can’t help but change one another. I both expected breast cancer, given that my mom and aunt each had it twice, and didn’t until I was much older. But when I was 42 with three young children, the news landed in me and began changing how I understood being a body and woman, a change, as my oncologist Dr. Matthew Stein told me, would keep unfolding the rest of my life. Here is the beginning of that story from my memoir, The Sky Begins At Your Feet.

We were completely lost in the Flint Hills of Kansas, and I didn’t care. All we could see were the wide expanse of hills, sky, cows, and the occasional rock, skeleton of a windmill, or fragmented stones from pioneer homes. I stared out the front passenger side window, marveling at the lush green rising and falling all directions, hardly any power lines because there was so little for the lines to power. The land looked surely as it had appeared for hundreds, thousands of years. Tall grass sloped all over itself on what felt like the top of the world, and everywhere the wind conspired with the sun to make the grasses gleam. It felt like being at very high altitude, only instead of mountains, windmills.

Expansive as galaxies, the Flint Hills lay down all directions like long, lanky bodies rolling away from or toward each other. “The sky begins at your feet,” writes essayist Anne Herbert, and there’s nothing like wandering around the center of Kansas to prove this, and also to find out how easy it is to get lost in the sky.

Early this March morning, the sun illuminated the curves of the land and long shadows of trees and rocks in such a way that we let ourselves get lost without a second thought. My friends and my nine-year-old daughter and I were driving all over Chase County, looking for the ranch of a woman we were to visit for an event we were organizing the following fall. Now we were driving eight miles in the vibrant hills down the wrong road.

None of us spoke when we reached the dead-end. Instead, Joy just u-turned the car around, skimming some of the grass, and we headed back in the direction from which we came. We were all too taken with the sensation that this land went on forever….

I didn’t know that once we righted ourselves, found the woman we were to meet, delighted in driving all over the county for a few more hours, and eventually made our way home, I would begin another kind of trip. I didn’t know that while I was merrily lost, a technician from our local hospital’s mammography department was leaving a message on my answering machine that would lead to an old doctor, white-tufted and shaking his head, who would say, once he saw the mistletoe-shaped lump in my breast, “Yes, this looks very worrisome indeed.”

I just knew how alive I felt, and how the world seemed, at that moment of being lost, to be forming anew, which, it turned out, was also true.

I believe in those first glimpses as well as hard-won, long-term truths. In that first glimpse of being lost and alive, I saw something that would lead me: the beauty of the always-in-motion world, friends and community, land and sky. Within a short time, the wonder my big-picture wonder turned to fear and what many of us diagnosed with serious illness experience: a disconnect between the life we thought we were leading and the one that turned up, between who we saw ourselves as, and who we are at this moment. I wrote this poem, printed in Reading the Body, about that moment.

Diagnosis

Not what you’d expect, not in this ordinary body:

the phone message on the machine that says,

mammogram” and “irregular,” the technician’s voice

later who tells you there’s something

to look at, make sure, check, just in case.

Then it’s that moment alone in the bedroom,

the chair so large and forgiving, the panic

that suddenly seems extraterrestrial, the incessant

questions while the wait stretches its beginning

to meet you.

Until the second x-ray hangs on the lit box

singing out its small constellation of calcium, until the

surgeon’s receptionist touches your shoulder kindly

and nods, until you lie on a still table

while a nurse looks, shrugs just a little,

until that call, and those words which come

by the time you already know them, you

already know the walls of your body falling away,

this dropping down to your seat, to your notebook

where you write it down because you’re supposed to,

to your fingers looking so normal

as they hold the pen and paper, unfurling

this new script, this open page

of a body where, without moving an inch,

you’ve become a flesh-and-bones double

of who you always were – one who has cancer,

one who can’t believe it, and both of you

standing up, shaking the hand of the doctor,

walking out into widest sky you’ve ever seen.

I thought cancer would be quick and not interfere with my life too much – a lumpectomy, some radiation, and I’d be back in the saddle again as if nothing has changed but a little less boobage. But after my lumpectomy, the bad news kept getting worse. I had Stage 2 cancer with metastases in the lymph nodes under my left arm. When the word “chemo” was first mentioned, followed quickly by “oncologist,” I was terrified. I threw up easily and was very sensitive to medicine. Hell, I can’t even drink a beer without a migraine, so how could I possibly do chemo?

I reluctantly went to Dr. Stein, a compassionate and wise oncologist at Lawrence Memorial Hospital, with my husband and a lot of paper for note-taking After meeting for two hours, I was skeptical about chemo but in the face of statistics that mapped out a very shortened life without chemo, I agreed.

Chemo, like everything else, is not what we think. I could still work as a teacher and workshop leader. I could still write, throw a frozen pizza in the oven for the kids, and watch chick flicks while guzzling iced water. I was, and this is what surprised me most during the six months I did a rather aggressive regime of chemo, still me, not erased by my treatment, just dampened down. Sure, there was discomfort, pain, fear storms that blew in from seemingly nowhere like dust storms that covered everything, lots of doctors appointments, impressive projective vomiting, a rush to the hospital with an infection, and all manner of side effects, which I compared in my memoir to a walk through the Princess Bride’s fire swamp. There were mouth sores, headaches, queasiness, blasts of steroid-induced cleaning spurs that left me listless the next day, and massive mood swings that could have been from chemo, temporary menopause chemo catalyzed, depression or all of the above.

There was also meals delivered by friends and family so regularly for six months that we had to beg people to bring less food, surprise guests from other periods of my life who wrapped me in love, strangers who carried my bags to the car and hugged me, my children and husband especially being there in ways that kept bringing me back to the real life, and a whole lot of humor, one of the most important ways I found to feel almost normal. Here’s another excerpt from The Sky Begins At Your Feet.

The Tattooed Lady

After my buzz cut, right after the second chemo treatment when my hair was supposed to fall out, it fell out in such slow motion that I started to look less like a Holocaust victim and more like a very confused duckling. That was when I called Courtney and Denise. Veterans of shaved heads, and lured also by the promise of spaghetti and meatballs, they came right over.

While the pasta boiled, Denise shaved a checkerboard on my head, telling me it looked awesome. Courtney nodded, but Ken, walking in the door after a long day at work, told me I looked like a gang member. The kids trailing behind him just gaped at me.

I went to the mirror. White supremacist. Not really my look. So I asked Denise to shave it all off. Sometime after spaghetti and meatballs, with Courtney and Denise joking about my cool new look….I found my hand reaching for a pack of fake tattoos. Birds. All different kinds – cardinals, blue jays, eagles, owls. Some of the birds had wings outstretched, mid-flight, and others were perched. The tattoos were my nine-year-old daughter Natalie’s, and neither she nor I could remember where she got them.

Tattoos. Bald head. A flash of electricity jumped between them. I knew what I had to do.

I put a cardinal right over my left eye, a goose over my right, and the others became part of the garland around my head. Flight. Wings. Color. Beauty. They just seemed to belong there.

When I came back to the table, where Forest, was passing out ice cream bars, he started giggling. “Are those permanent?” Daniel, aged 12, asked.

“Oh my god,” said Natalie, but she was smiling. “Mom, you’ve got freaking birds on your head!”

The tattoos were indeed temporary, and within a week, my birds started to tatter, but I found a toy store that carried temporary tattoos….It became a ritual: Once I week, I would shave my head smooth of the nubs that had started to erupt, and then carefully, with a wet washcloth, apply a circle of mammals, amphibians, butterflies, or sometimes flowers. The ring of flora or fauna lightened up the chemo for the kids and for me and took the bald edge off my life. Once, as I lifted a bag of groceries, a woman called out, “Hey, I like your fishies.”

I turned and looked at her, trying to smile as I said, “They’re whales.”

I walked into the hall of Forest’s elementary school where some kindergartens stared at my head, so I bent down.

“Wow! Dogs,” one said.

“That one looks like our puppy,” said another.

For a chemo appointment, I wore flowers, small delicate pansies, daisies, and roses. For a taco dinner at Ken’s parents’ house, I sported small woodland creatures, a fox over my third eye. For getting the oil in the car changed, I wore wolves….

One day, when a teacher saw my bald head as I picked Natalie up, he looked at my garland of galloping horses, and called out, “Hey, who did you lose a bet with?”

“God,” I answered.

But it turned out that at least God had a good sense of humor, and there was something about wearing a ringlet of kittens around my scalp that made chemo seem a lot less like a pact with the devil.

No pact, but a pack: the pack of people I come from who, it turned out, seemed like sure bets to have the BRCA genetic mutation for cancer – breast cancer widespread, pancreatic cancer that killed or would kill my dad and his brother. When my genetic test came back, I was positive for BRCA 1, and so had some big, or rather, size B-cup decisions to make about whether to have my breasts, ovaries and uterus removed. With an 87% chance of recurrent breast cancer and a 44% chance of ovarian cancer, I decided, with ample support from many nurses, my oncologist and surgeons, and most of all, Ken, family and friend, to let it all go. From Reading the Body:

Lilac

The day after they cut my breasts off,

just home from the hospital, not even

napping or talking on the phone yet,

that day, I walked on my own two legs

down the dirt road over the slope

of loose rocks, cradling, as I walked,

the broken body, the large orange handled

clippers, the big wind holding me,

the man I loved behind me getting ready

to start his car to come get me,

that day beginning the healing

from all of it – unslashed

from the expectation of what knife or infusion

comes next

 

was the day I made my way to my mother-in-law’s

old-fashioned dark purple lilac, and reached against

the tightness of gauze and paper tape, against

the odd sensation of parts removed and scars

just making themselves, against my sore arms reaching

toward their old strength

 

to gather and hold,

to cut and cut and cut

all I could fill my arms with,

all the dark purple alive with death and

birth, loss and blossom, and the white ones too.

 

My arms filling with the explosion of lilac,

my life filling with wind and weight of branches,

all of it against, upon, my open chest,

all of it ready to be carried

into the next life

that starts right now.

After 14 months of chemo, three major surgeries and a few minor ones, dozens of casseroles delivered with love, countless long talks with my husband about every angle of this journey, three surgeons, one oncologist, and a bevy of holy nurses, I was done. “Am I cured?” I asked Dr. Stein. “We won’t know for sure for five years,” he answered, and when it comes to mortality, we’re never completely cured, yet hanging out with it catalyzes many responses. Here is what I wrote about my one-year anniversary in The Sky Begins At Your Feet:

Happy Anniversary, Darling!

Anniversaries are major deals for survivors, and often the way we introduce ourselves to doctors, support groups, and other survivors….it seems like something that would fit well on a stick-on name tag, yet it carries the weight of healing and defiance, hope and fear, the future and the past….

Still, I cling to my (cancer) anniversary date, March 21st, the spring Equinox, as another fence post I’ve reached in my life’s wandering through the wide prairie lands – no path often present – of struggles and arrivals. Since my cancer treatment ended, two conflicting impulses have been released into my bloodstream: to hold tight to the wider view of life that cancer gave me, and to get as much done as possible, because who knows when I’ll die.

Let’s just say that, at first, the “get as much done as possible” gene was dominant, which isn’t so surprising given my history of packing my schedule to fill each pocket with something to do, my workaholic father, and my infatuation with starting new projects. I shot out of the cannon at high speed, adding to my life more administrative work related to my teaching job, and more writing projects, workshops, groups, and volunteer obligations.

But just like the earlier rise and fall from the chemo steroids, after flowing with this jet-stream for a while, I crashed into the ground, where I found my second impulse taking deeper root.

The second impulse led me to others’ stories, the veil gone as they spoke and wrote about what mattered most in the writing workshops I started first at various hospitals before settling into regular writing retreats at Turning Point: The Center for Hope and Healing in Kansas City. From The Sky Begins At Your Feet, here is one of those sessions, incidentally, on my third anniversary:

I look at the square table surrounded by seven faces, and remember that the group last year had 12. Gone is an elegant retired nurse and lover of piloting planes, who came last spring wearing beautiful pink sweaters and accented scarves, saving her energy all day from her breast-to-liver metastasized cancer for a chance to write stories about her life. Gone is the young mother of two small boys who had been told she was probably going to be okay only to find….she had a particularly aggressive kind of cancer that moved at lightning speed all through her organs. Gone is the woman who gave other members tremendously wry and wise support while she was caught in extensive treatment for rectal cancer. “I’m just a pain in the ass,” she reminded us, months before her death.

We spend a lot of time in these groups laughing and crying….Often, just introducing ourselves brings tears of relief – here, people can write about whatever they want without having to protect loved ones. Those tears also come from the caregivers, who feel that monumental pressure to hold up the other, to put their fear and dread on a shelf so they can get in the kitchen and cook up something good to eat, feed the life that feeds them.

But it’s the laughter that stays with me – the jokes about “You look great!” and the comebacks of, “What do you mean? That I usually look like shit?” The way Katie begins one of her poems with, “Don’t give me that look, that look that says I have Rumsey Funeral Home on speed dial.” The cracks about how sexy we look without boobs or hair….wearing compression sleeves or carrying our canes.

When I get home one summer night, Ken asks, “Doesn’t it hit on all your own cancer issues to do this work?” He thinks it might depress me, but no, it does the opposite.

I think of Linda, a writer and photographer who has been taking my Kansas City workshop throughout her late-stage ovarian cancer. Last week, Sue said to her, “You know, my breast cancer was caught early, and it’s nothing compared to what you have. When I’m with you, I feel like I’m really okay.”

I’m glad my dying makes you feel better,” Linda said with a straight face, her page boy wig distinguished, as she catapulted us all into the kind of laughter that takes your breath away.

Maybe my ease has to do with how Linda’s dying helps me cultivate perspective, give up sweating the small stuff so much (by the way, it’s 12 years later, and Linda’s still alive). But I suspect it has more to do with the courage I witness, week after week, in all the workshops I do: the way that people are willing to take great risks in the stories they write and tell; how the veneer of what we think keeps us safe is gone in such workshops. What really matters is unearthing meaning, clearing the obstacles out of the way, including fear and doubt, insecurity and low confidence, to feel more alive in the process of creation.

It also has something to do with the stories I hear and the stories I witness. The man who reads a poem he wrote to his wife, who just finished breast cancer treatment, about how strong she is, crying throughout his reading while reminding us, “Hey, I’m an engineer! I never cry, and in this workshop, I can’t stop.”

I remember Linda’s words, “I don’t believe we were writing toward specific endings. They just happened serendipitously and wonderfully.” She reads me one of her favorite endings, “Every fiber of me begs to wake up—to wake up, electric, stunned, and newly alive.”

It’s everything Linda says, that new life available at any given moment for the looking. The faint breeze that comes through us as we get ready to leave one place and land in another. All the time.

At the same time, I realize that who gets to live through cancer has nothing to do with personal goodness. I see women who have similar diagnoses to mine face recurrence or sudden death. While treatment choices, lifestyle, diet and attitude certainly weigh in on mortality, cancer is also so catalyzed by a complex web of what we know and what’s beyond our knowing. A spin of the dice as to why Marla survives stage four breast cancer for five years, and why Edie endures three recurrences of what was supposed to be caught early and easy to treat. So often cancer has nothing to do with character, fairness, risk or daring.

Given the poisons infused in the soil, water and air, in our bodies and the bodies, stems, trunks and cores of other species, all I know is how much humans are not exempt from the earth. Some of us have a little more of the canary in the mineshaft in us than others, but we’re all in the mineshaft together.

We live in a dangerous world. We live in a beautiful world. What is essential in our stories can save us from and for something, but often we have to wrestle with the story to find such treasure. Throughout my chemo, I told myself the story of Jacob and the angle from the old testament. Jacob didn’t just wrestle with the angel until he was freed but until he could exact a blessing from that angel. Each chemo treatment, I told myself, thanks to good advice from a healer and friend, to take it all in deeply, then not release it until my body received the blessing of bad cells dying so good ones could flourish. After treatment, I realized that wrestling with challenges to find the blessing isn’t a bad way to dance with gumption and grace. We can puzzle out with what comes enough blessing to transform trauma, loss, pain and uncertainty into whatever meaning there is for us.

Looking for meaning entails getting cozy with where and who we are, including our interior weather, which can change on a dime, especially during moments of great compression where mortality is more than an abstraction. We might feel numbness, disconnection, even denial, which can be a mighty helpful tool when letting the floodgates open would drown us or we just need to take a break from the pain, terror, or confusion.Whatever comes, the last thing we need to pepper it with is shame for what we feel. I’ve seen so many people, including myself, needing to go through momentary pity parties and hate-the-world bouts, and while we can likely agree this isn’t a good place to live, I believe part of growing our gumption and finding grace is not avoiding our own souls.

In the middle of my treatment, I saw a bumper sticker that said, “Oh no! Not another learning opportunity!” “Oh no” is right as well as “oh, well.” Each moment, each project, each relationship, each life has its own calling – something we can engage in to bring this to its highest manifestation. The lessons are in having a conversation with the callings.

My cancer told me, in billboard-sized lettering, to take better care of myself, extend my awareness well behind my frontal lobe to encompass my whole body, and love that body even if cultivating this love is life-long and more prone to show itself in glimpses. I learned not just about my own resilience, but about the resilience of my family and community, and how it was a gift to me to accept help as well as a gift to those who give it. I’m still learning how vulnerable, fragile, strong, and surprising I am, how I’m not always who I thought I would be, and neither is anyone else. I have the rest of my life to study how to be fully human and alive, to notice the great beauty and power all around me possible in love and care.

What astonishes me is the courage we’re all capable of, not just to endure chemo, radiation, surgery, and losses, but to continually discover more of what the world in around and within us. John Willison had paratoid cancer, slow-moving as a lonely and overloaded freight train, he once told me. In the Turning Point writing workshops he attended for six years, sharing writing of such magic and exactness in naming what is that everyone in the group would routinely lean forward and smile when it was his turn to read. As he was dying, a friend as well as a workshop participant by then, I worked with him to publish his first and last book of poems, I Have My Home in Two Worlds. Here is an excerpt from one of his poems about loving whatever comes – feeling what you feel, and embracing the lesson:

Reasons to Love Grief

You should love grief, because, chastened so,

when it goes out, if it goes out at all,

into the assault of the world,

it’s under cloak and veil, too ashamed,

too raw to reveal itself, all rag and bone.

 

Love grief, because there are moments when

it decides to go some distance away –

to a lonely cabin by the lake, which it considers

jumping into because it’s always wondered

what it would be like to drown.

 

You should love grief because it isn’t itself anymore.

It goes out to bars, drinks all night, hurls insults,

gets into fights and comes home, all cut and bruise.

 

Love grief because when it looks in the mirror,

it does not see itself reflected back.

It has been hollowed and emptied out

and simply wants to drop down

into the stone cold ground.

 

You should love grief because it is a lost girl,

abandoned by those who should have loved her.

 

Even her friends just chit and chat,

talking about their next meal,

getting their fill of the world

while sitting next to them,

there is someone starving.

 

It is all that, but it is also this:

the tenderest thing just a tear away

from breaking wholly open,

letting the deepest love it has ever experienced

 

come spilling out.

And love your grief because

if not you, who then.

When it comes to serious illness or any of the ways life can kick us when we’re down, it’s especially hard to stand back up so no wonder there’s a lot of talk of cultivating resilience – the ability to bounce or bend instead of crash-land and break. I think feeling what you feel – discovering more about who you are through what life gives you – is the other side of finding our resilience. We see how low we can go and how, against the odds, we get out of bed, stumble toward the kitchen, and pour ourselves a cup of lukewarm coffee, each day beginning again.

At the same time, there is this: this moment, right now tumbling into autumn around us as the fields yellow and grasses redden. Right now in this room lit by the faces of those who know surviving might come breath by breath, but thriving comes by being with those who have eyes to see and hearts and to hear. Which also speaks to how we can’t often sustain gumption or grace without community, family, friends, a circle of people who really “get” us, witness our story, invite us into theirs, and share the wealth of our collective courage, insight, and examples. Listening to one another enhances our ability to hear ourselves, to see our own story as part of the unfolding mosaic of our days and lives. In The Little Prince, Antoine de Saint-Exupéry writes, “And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.” Julie Cowdin, a participant in both my Turning Point and Lawrence Memorial Hospital writing workshops, wrote this poem, published in My Tree Called Life:

To Other Survivors

I am never alone.

You heard the words, “You have cancer” before I did.

I am never alone

You were afraid before I was.

I am never alone.

You cried rivers before I did.

I am never alone.

You once had poison running through your veins.

I am never alone.

You were bald once too.

I am never alone.

You’ve had the same surgeries.

I am never alone.

You tried to soothe your burning flesh.

I am never alone.

You were beautiful, gracious, living survivors before I was.

Survival often gets confused with heroism as if not surviving cancer means failure when in my book at least, it’s what we do with our lives that lifts us and others around up. Julie’s cancer returned, and she died, leaving behind young children and a loving husband as well as her writing and humor – she often called herself the Edgar Allan Poe of our writing workshops. In her words about how we’re never alone, we can also look around right now and see in each other, look within and see in ourselves, our love we carry all of our days for those now gone. We can carry that love into our work and play, art and solitude, dreams and understandings. As anyone who’s suffered a big loss knows, the relationship doesn’t end with death; it continues on over time, a conversation in and with our souls even if the one gone doesn’t speak up enough to hear what he or she is saying most of the time. Memories bubble up through the surface or flow down from the heavens, bringing ache and yearning as well as sweetness.

I watched and loved a great many people – my dad, my stepdad, numerous people in the writing groups I lead, and most recently, a dear friend – die from cancer, and what I found is how important it is to be present with and listen deeply to those we care about, no matter the situation. Going on in the cloud of big losses calls on us, perhaps even more than the daily challenges of cancer treatment or its aftermath, to grow our gumption and grace. That is how we wrestle with the angel to honor the memory, find the blessing, and keep on going. That is how we open ourselves to the beauty of the world as it’s happening. That’s what makes us weak and strong at the same time.

We carry our stories and losses, our triumphs and heartbreaks, our pasts and futures in our every step. Doing so with gumption and grace points us toward the fierceness of embodying how our lives are our lives, yet softening and opening our hearts to chat regularly with our purpose and callings, and embrace our people, the ones gone, the ones still here, the ones to come.

Bridges

All that year of cancer and surgeries,

of my father’s cancer and death as I held

his knee, of his chemo and mine,

long waits for injections or test results,

I dreamt of bridges – large suspension bridges

I had to scale with my hands or climb over

gingerly with trembling legs.

Slim wooden slats stories above certain

rocks, and always a slat or two

missing in the high wind. Crossing

expansive spaces made of water

or shifting ground, junkyards or rivers,

untold distances to master.

Sometimes there were ways to stop climbing –

a phone call or a plane ticket, another needle

in my forearm, the gleaming ceiling of the

waiting room while the magazine spread itself

across my lap, telling me of other destinations.

Or there was the occasional fall as I sat on the bed,

the fear storming through me like shards

of nightmare, the reaching out for help

from that sensation of going under.

I do not have words big enough for how far I traveled.

I do not have language intimate enough

for how I arrived here, to the world more itself

than it ever was before, tender as the last breath

of my father, fierce as the woman

waking up again on the other side.

Please support my publishers! Get a copy of The Sky Begins At Your Feet at Ice Cube Press here, and you can pick up Reading the Body at the Raven Bookstore in Lawrence, KS, or by contacting me at carynmirriamgoldberg@gmail.com. John Willison’s book is here. You can also pick up a copy of My Tree Called Tree: Writing and Living With Serious Illness, which I edited, published by Turning Point: The Center for Hope and Healing here.

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.

Everything That Converges: Everyday Magic, Day 868

12039012_974395835935962_4617718929892754117_oLife composes itself of convergences we could never plan on our own. A week ago, I was rocking the empty nest blues, and I don’t just mean the official offspring. I felt tired, restless, sad, confused, and a little cut off from my sources after finishing some massive projects that had filled big and little bits of my time and thinking for years. These projects had happily taken flight, leaving me grateful but in transition between endings and beginnings.

Enter a surprising convergence, starting with a great big ball of light Sunday evening. After finally getting the kayaks out of the rattlesnakes, and the rattlesnakes out of the kayaks, we took those babies (the kayaks, not the rattlesnakes) out to Clinton Reservoir to try them out. We were running late because Ken found he needed to further secure our kayak carrier, some important phone calls rang in, and of course there was the matter of getting the pill down the throat of the sick cat. But because we were late, we ended up launching ourselves on the water right on time for the the super moon rise and eclipse.

There is little I love as much as moonlight on water, and that night, I actually got to kayak down the long shimmering line of light from the rising moon on the waves. The moon started large and mother-of-pearl-lit in a pink sky. As it rose, it brightened and goldened. We kayaked in circles, marveling at the beauty of it all a large cloud of mosquitoes descended, helping us learn how to kayak at faster speeds.

12027221_974396045935941_4398415911881657781_oFrom there, it was off to get French fries at a local shop that, when we told the workers the eclipse was starting, ended up giving up triple the amount of fries. We took our heavenly bag to an eclipse-watching party where we watched the moon lose itself to the reddening shadows and light of the totality. We shared our fries, drank hot cocoa, and probably because of that particular combination I imprinted on as a teenager, I felt that old thrill of being free and alive.

On Monday, my car unfortunately smelling like fries, the eclipse gave way to preparation for a colonoscopy and endoscopy, the latter because of my chemo-damaged esophagus. For those of you who have done this, you know it’s kind like your own little science experiment as one of friends aptly described the process. For those of you who haven’t done it, I’ll just say it’s not the end of the world although I found it hard to remember words when speaking to various people throughout the day. It’s surreality with a lot of trips to the bathroom between downing enormous jugs of fluids.

Tuesday, the procedure was a liIMG_0007ttle scary, but I have a great doctor, and the nurse covered me in heated blankets before giving me the drugs that seamlessly transported me to the other side of the procedure. I woke up, ate crackers, talked with the doctor, and looked at vivid photos of my insides. Afterwards, a little like being on the other side of a particularly bad migraine, the world was vibrant, food incredible, and sunlight an extravagant adornment. In a sense, and in reality, I felt cleaned out and ready for what comes next, which was fortunate because part of the future would entail a journey.

Still moonstruck and medical-procedure-finished-grateful, I slept easily so I could wake early on Wednesday to drive myself, some hot tea, and a whole grain English muffin to the airport, take one plane to Chicago, wander that airport a bit, take another plane to Burlington, VT, pick up the rental car, and dock at the Goddard College for four days of meetings and events.

IMG_0013The colors here are just starting to pop, so much turning quietly yellow, calmly pink, and psychedelic red. Tomorrow, I’ll see more about where I am through this new window, almost unimaginable a week ago.  What converges–medical procedures,  blessings and beauty from the sky and land, journeys conjured but mysterious if you open your eyes–sometimes has just the kick-ass power a woman needs to help her land where she needs to be, flung out of her old nest and into the open sky. I’m not sure if “everything that rises must converge,” to quote Flannery O’Connor’s story of the same name, but this surely has been a week of everything that converges showing me more about how to rise.

Moon photos by Roy Beckemeyer. Check out his wonderful book of poems, Music I Could Once Dance To.

 

The Obstacle Course of April: Everyday Magic, Day 846

IMG_3486
Oy vey!

I spend a lot of time on my calendar, trying to ensure that I’m not putting myself out there too much at the expense of taking care of myself in here (this body, this home, this balance). Yet this year, somehow the convergence of all I scheduled for April eluded me. From February on, once I saw the totality of my over-commitment — 17 gigs — readings, talks, workshops, a keynote involving four flights, 1,400 miles of driving, and 7 states — I felt scared. How would I keep from getting sick and exhausted? Answer: I wouldn’t, and on April 29, I can say, that’s okay. Then again, for a poet and former poet laureate, plus someone who wrote a Holocaust book, April is kind of the bread-and-butter month of freelancing, thanks to the blessed and cursed poetry month designation, and Holocaust remembrance events. I’ve been telling friends that it’s a kind of obstacle course: run fast through the hoop, shimmy down and crawl under the rope, hoist myself up the pole, and go face-first down the water slide into the pool to swim 18 laps. I think running up and down small mountains while balancing an egg on a spoon is also involved. Each time I return from another journey, I high-five everyone I know, then begin re-packing my books, clothes, and notes for the next gig.

In person together again or for the first time at Eat My Words in Minneapolis
In person together again or for the first time at Eat My Words in Minneapolis

Some of us are hard-wired to leap over the cliff without remembering that’s a long way down, and it would have been wise to have packed wings. I’ve long realized that berating myself up for over-committing is a silly endeavor. I suck at beating myself into submission, and I wouldn’t want to give up these confluences of such meaningful work, beautiful stretches of mountains in the fog, loud music to sing to while driving across farmland, or people I get to meet and love in faraway places. In the last month, I’ve read tornado poems in a soulful Minneapolis bookstore to friends, family, online students I was meeting in person for the first time, and a Goddard student I hadn’t seen in years. I’ve laughed hard over gyros with old and new friends in Minnesota, complained about lunch and praised the beauty of the dogwoods while re-uniting with poetry therapy pals in North Carolina, watched spring leap forward in blossom and leaf from the northern to the southern border of Iowa, listened to people living with chronic pain read their powerful poems in Kansas City, and marveled at the dozens of prom-dress-attired couples filling Falls Park in downtown Greenville, SC. I’ve tasted nettle pesto for the first time in a Kansas library right before Stephen Locke and I presented our virtual tornado chase and associated poems and stories. I lucked into a private tour of Jay and Barbara Nelson’s stunning Strecker-Nelson gallery in Manhattan, KS, and just Monday, talked with a WWII veteran and a woman who grew up in Nazi Germany while presenting an Osher talk on Needle in the Bone. There

Sometimes a bagel is your destiny (named so here) at blurry-o-clock in the morning somewhere in South Carolina
Sometimes a bagel is your destiny (named so here) at blurry-o-clock in the morning somewhere in South Carolina

has been strong tea, too many carbs, occasional yoga, a round of antibiotics, a lot of hot baths, and serious thought about what kind of Spanx to wear. There’s also been an abundance of hugs, tears, deep talks, selfies taken with many a friend, and many manner of reunion or first-time connection. I would want to grow a bit more wiser when it comes to leaving spacious stretches of spring open. Maybe next year, I tell myself, and no matter what happens, even these blossom-weighted days and too-short nights have their gifts.

Loving Rachel Rolfs: Everyday Magic, Day 821

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Rachel, her brother Micah and mom LaVetta in 1983

This was a girl who grew up in the background, preferring to help others shine and sing. She was existentially kind. She was enduringly generous. Her presence made all things possible wherever she landed, and where she landed, she rooted down, making herself a sheltering tree that cleansed the air and strengthened the soil.

This was a girl I watched grow up, meeting her first at the Kansas Area Watershed Council in 1982 when she was dark-haired, quiet, and sweetly attentive to the younger kids. She helscan00241ped in the kitchen. She brought her loving ways to all our circles and meals, laughing at the antics of her younger brother Micah and the crazed stories of elder Bob Lang. From that time on, I saw her quarterly at all the gatherings, growing up on the outer edge of our crowd, fully there without tak248581_195740060472851_3679981_ning up much space.

This was a young woman with immense capacities. She could balance a budget and keep complex books for several projects and businesses at once. She could herd a crowd of children with story and crafts. She could make an intricate rainbow invitation of color and fold for her wedding. She could navigate her divorce and new wave of life with grace and fortitude. When Micah was dying, she sat by his right shoulder, singing to him for hours into the night. At his memorial service, she stood tall and broken-hearted, holding all who held her. Her hugs were legendary — the last time I experienced one was in front of the kale at the Merc, and as I leaned into her, I felt enveloped by softness and strength.

10556528_729637390416446_9124468400539768559_nThis is the woman who died too young by most of our expectations of life and justice. Told by a gaggle of doctors last summer to pack her bags and prepare for the end, she politely replied, “No, thank you,” and instead sought out whatever would bring her the best chance to live a long and lively life. Even upon getting her diagnosis, she found a solid name for her condition reason enough for gratitude and had her mom, friend, and Verne dress up at the hospital to celebrate.

In her last months, she sought out healing and traveled from the background to the center of her own story. She let herself be utterly loved. She spoke up about what she needed and didn’t need. She brought every ounce of gumption and grace to the daily struggle of intense pain and a bevy of shifting ailments and limitations. She shone the light on her innate and well-practiced courage, there all along and now visible to all of us as a lighthouse is to ships on the approach. She made her own choices. She embraced language that named all this on her own terms, asking her to breathe along with her. In concert with her wishes, Verne and LaVetta put this on the gofundme site that helped many of us support the out-of-pocket expenses of her care:

This interesting healing crisis/opportunity also provides each of us who know and love her, an opportunity to breathe in love, and breathe out fear. We can learn, live and grow, allowing positive thoughts and words of healing to be gifts to ourselves, as well as each other. What a beautiful gift to be on this journey with such a beautiful warrior goddess.10659262_767838069929711_7467646888006635553_n

This is a woman who took on serious illness, dying and death as a journey into and beyond deep healing. We gather around her fire of courage, her sheltering tree of life, her autumnal garden of blossom and falling, her beautiful face and clear eyes, and say goodbye to this girl, this woman, this beloved one.