Category Archives: Family

Look At Me

Hanging out with a three-year-old the other day, I was reading a magazine while he attended his own mysterious business. Suddenly, he clambered up beside me and, clasping my face between small, absurdly warm, moist palms, turned my gaze full upon his own.

I started praying the St. Francis Prayer about nine months ago, using a great meditation tape by a man named Andrew Harvey. Taking each line of the prayer and meditating deeply on each word, then applying each line to my particular situation or frame of mind at that moment, provides me with a tether of sorts. The familiar words weave a connection to my Higher Power and a link to my beloved human family too. I can call on those words anytime; in fact, they are beginning to develop the power to rise up within me unbidden, yeast for a potent salve. Harvey says praying it regularly installs it like an operating system, and that’s what I need to be running on my hard drive.

“The innermost — what is it?
if not the intensified sky,
hurled through with birds and deep
with the winds of homecoming.”

–R.M. Rilke

Lord, make me an instrument of Thy peace.” Most days, my attention is like an overstretched rubber band, snapping off wildly in every direction. Even after a quarter-century of regular meditative practice, I find myself with a toothbrush in hand when I mean to be sitting still with my eyes closed, or, worse, slipping from meditation into those endless loops of imagined conversations justifying myself to my brothers and sisters. Right in the thick of doing that, I picture myself, awkwardly and with great effort, climbing up into an oversized lap.

Lord.” Tugging. Small, inconsequential. Oozing with need, sticky hands. Desperate courage welling up, I struggle through the fear to clasp the Beloved’s face in my hands. Hot, importuning. “Lord, make me…” Make me pay attention to you. Shape me, turn me, make me gaze deeper within.

A miracle: the Beloved turns to me, locks eyes with me. I am sinking into an infinite gaze, until nothing else is, only deep cobalt sky and stars. Rilke wrote “The innermost – what is it? if not the intensified sky, hurled through with birds and deep with the winds of homecoming.” 

Yes, that, for an eternity that snaps into an instant and suddenly I cannot bear to sit another moment and jump up to take a pill, make a phone call, a cup of coffee.

The shape of my life frequently feels unbearable since my cancer diagnosis. Besides the physical pain, setting aside even the emotional pain, there is my cursed imagination. The turmoil in my bowels often bears a distressing resemblance to the shifting, turning, inside-out sensation of a near-term baby in the belly. Early in my diagnosis and even now if I work to attain it, I can revel in super-saturated sensations of taste, color, smells, just like I did in pregnancy. There is a waiting, an expectancy. My body is changing shape; the surgical hernia surges out from under my ribs, now larger than my breast. I wear a pregnancy belt to contain it. But what rough beast is slouching to be born?

Lord, make me pay attention to you. Take my thoughts and fears and yes, my imagination. Use me, play me, shape me, melt me down and cast me, into an instrument pouring out endless songs, an implement of peace that is itself intrinsically at peace. I clamor for that, I cast about and thrash wildly in demand of that, I wear myself out with these childish tantrums. But even that, even those struggles which appear pointless, damaging, serve a purpose: they force stillness on me, and eventually, with smeary eyes and snotty fingers, I can reach out again. Beloved. Turn your gaze to me.





At the table: I’ll have a double handful right now, please

My dear son Kai returned to Montreal Sunday. I am so grateful he had a chance to spend two and a half days in Atlanta with me, a whirlwind of three doctors at two different Emory campuses. I made macaroni and cheese while he was here, (added bacon and subbed a little soy milk), and because the avocados were so pretty, I picked some up too. Thanks to the inspired presence of Michael and Kai, the guacamole got chopped bacon added as well.*

A friend took me to the grocery store Friday morning. There’s a sentiment too often inscribed on wine glasses and aprons these days, but during WWII, steely-eyed Londoners reminded each other to “keep calm and carry on.” I suspect it’s a cultural thing, perhaps a gender thing, but “carrying on” has always led me straight to thoughts of my belly. No matter what happens, we all have to eat, right? So, although I could not rationalize it one single bit, it felt okay for me to be in the grocery store Friday morning with my life in slo-mo shatter all around me.

I found the okra but they had black spots. “Do you have any fresh?” My friend who carried me to the market is a mind-reader. The produce manager smiled at her and returned in short order with a bin of okra pods, green as God intended. As I sorted, I remembered to breathe. I was looking for the short, tender pieces. The new ones, more fuzzy than spiny. I focused, sorted, breathed. I began to see how I might carry on.

I had my 90-day check-up last week, and here’s the bad news:  five new lesions on both lobes of my poor old liver. Here’s the good news: I’ll be starting hormone shots soon, and these may shrink or slow the tumor growth, alleviate some of the nasty GI symptoms, and also act as markers for targeted radiation therapy

I remembered all the times I’ve picked okra. My daddy used to grow a little bit in the backyard, when I was little and we lived in Kansas. He showed me how to pick the tender pods before the spines got mean. He taught me how to make snapdragons yawn and he teased my mom about her fierce loyalty to Jiffy corn bread mix for breading okra. But he kept a box of Jiffy mix in his cabinet for the rest of his life.

This put a smile on my face: remembering all the many, many times I have splashed that sunny yellow Jiffy mix, oil and beaten eggs across all the many stoves I’ve owned. The innumerable skillets full of the most delicious, tender, crispy, sweet, salty sliced joy from the garden that I have proudly presented to a tableful of guests, guarded at the kitchen counter, jealously hoarded for a latecomer. The buckets of sweat that have poured down my face while ceiling fans and floor fans roared and percolated the sultry Alabama air.

“Look.” My friend had found the discount rack. “This is the best risotto ever and it’s only a dollar.”

I wouldn’t bite. “It’s out of date.” I went back to fondling fuzzy baby okra pods.

“No, it’s not. Have you ever had homemade risotto?” Well, no, I haven’t. Or rather, I hadn’t up until then. She convinced me. I bought it. A pound of fat, unsullied white mushrooms, selected slow. And a pair of strawberry cartons on the fly on the way out the door.

I wanted to cook the risotto first, since I’d never tried it before. You have to stir the stuff nonstop. Thankfully I had enough clout to press Kai and Michael into service. It was good. But the okra? It was heavenly. It was love-on-a-fork. It sang to me of my mother, my children, my past. I was tired and didn’t make it as carefully as I might have but Kai knows his part.

“Best okra ever.”

We finished up the odd meal with lots and lots of strawberries and canned whipped cream and those perpetually stale dessert cups. Nectar of the gods, I tell you.

This thing we humans do, this preparing and sharing of food. It has such power in it. My friend Ellen Beaumont Ballard, my friend Margery Thomson, my friends Phyllis and Anne and Melanie, Bridget and Carole and Tommy, all my parish family who have scraped little bits of orange cheese on celery sticks, dumped a box of crackers on a plate, put another pot of coffee on. We know that power. My entire life, the go-to response to strong emotion is food.

I was at a memorial service recently, for a man deeply loved by his colleagues, students, and family. We spent the weekend together at Bald Rock Lodge on Cheaha Mountain. An army of people, from age ten to ninety, kept food and coffee and sodas and snacks piled high on tables stretching the length of the room. Waves of people came in and out, migrated to the patio, down to the motel pool, out to the lawn. They laughed and loved and remembered their friend. I watched, mostly. And although I didn’t know Dr. Olander or his family, I was nourished. In fact, when we left, I was flourishing. Renewed and reinvigorated.

Lucky me, I got to go to a wedding in early June, too. We sat under the summer trees near the Platte River, long rows of picnic tables, and ate pie and danced, celebrated love and family ties, and those tables, too, were overflowing with something, some power greater than mere calories, physical sustenance. All these long, laden tables I have been invited to, stumbled over, contributed to the bounty or not, they sustain me now.

I had my 90-day cancer check-up last week, and here’s the bad news: CT scans show five new lesions on both lobes of my poor old liver. Too much for surgery. Here’s the good news: I’ll be starting hormone shots soon, and these may shrink or slow the tumor growth, alleviate some of the nasty GI symptoms, and they’ll also act as markers for targeted radiation therapy if that becomes an option. My original prognosis, a 20% chance of surviving five or more years, hasn’t changed. I like my Emory docs; from what I can tell from my research they’re near the top in treatment of pancreatic neuroendocrine cancer.

If you know me well, you know I’m the most gullible person alive. I believed in jackelopes till I was thirty (what, my dad would mislead me on that??). I’ll spot fairies and djinn and angels at the drop of a pin. I prefer this world with a dusting of magic. Perhaps because I want to see it, I do. Even so, I have company in my capacity to believe. Any number of my cousins would swear to the presence of the Holy Spirit at sweet Olivia’s wedding in Omaha. Great clouds of angelic white moths swarmed the memorial celebration at Cheaha. Discouraged, aching hearts are renewed and encouraged and restored over and over, and simple kindness blooms underfoot in all directions. Beautiful things that should not happen, do.

Maybe it was just luck that allowed Kai’s schedule to fit in a trip to Atlanta. I think my Higher Power knew I needed my son to be with me and Michael when we got that news, and then to meet my great psychiatrist at the Winship Cancer Center, and my incredibly compassionate pain management doctor. I’m so very glad I could fry okra for Kai, and spread a tableful of love, nevermind that we ate off plates in our laps in front of the tv.

As a Christian, the Table with the deepest significance for me is the altar where I gather with my brothers and sisters to feast on Christ’s sacrificial love. One of my favorite preachers described that table once as extending, somehow, from my beloved parish home Saint Andrews, to heaven, through time and space, filled end-to-end with all whom we have ever loved and lost and all those who are to come.

That Table, now. It is in my heart. And so, dear friends, are you. I often don’t feel like eating at all these days, but whatever you’re serving up that can’t be tasted or seen yet warms the heart? I’ll have a double handful, please. Right now.

Will you tell me about a time when you’ve found more than food at a table full of folks? Or if you don’t feel like writing it down, just take a moment and remember what it feels like. We’ll make the world a little more beautiful, one thought at a time.

*My most recent favorite t-shirt slogan: “Because of bacon, I know Jesus loves me.”



I’ll Sleep When I’m Dead

what price, facing the wreckage of my past…

After becoming a mother in my late twenties, I zealously guarded my sleep privileges. When my children were older, I heard several variations of this thought: why waste time sleeping when there was so much living to get to? I was deeply offended. Sleeping late, long, luxuriously, was my reward for hard work and stress and parenting.

Several years before my cancer diagnosis (although the cancer was already hard at work in its own indolent way), I began having terrifying episodes of insomnia. They seemed to be connected to the heart trouble I developed in 2006. I would wake up in the wee hours with immobilizing chest pains. I slept alone; Doug and I were separated for years before he actually moved out of the house. So the pain would wake me and I would begin a vigil of fear and shame.

These days, I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should.

The fear was that I was actually dying of a heart attack. I have a very mild case of congestive heart failure and a very active imagination. The pain was transfixing – literally pinning me into the bed while I struggled to breathe and slow my heart rate. The shame remains more difficult to speak about. But isn’t that the bondage of shame, anyway? The inability to speak it aloud?

I was ashamed that I would be found out as a fraud. That I was not really sick, that I had somehow manufactured the experience of pain. I was deeply ashamed that somehow, my mind had tricked my body into feeling symptoms. I felt shame that I might be, however inadvertently, taking more than my fair share of attention, of medical care, of health insurance benefits. I felt such deep shame I even made up a little rule for myself: no more than one ER visit per year for chest pain.

Seeing my marvelous cardiologist every 9-12 months, as she recommended, we spent a lot of time talking about those chest pains and my fears. She ordered tests, changed up my meds. But the chest pains kept recurring, and I kept spending those wee hours of the morning, two or three times a month, in a fug of shame and pain. Insomnia plus a crippling fear of impending death plus shame is a potent and no doubt toxic mix.

Along with the initial cancer diagnosis in August 2017, I was told I have ulcers. In the flurry of consternation about pancreatic cancer, somebody prescribed me the generic equivalent of the little purple pill, and I’m happy to report I have had not a single episode of that particular insomnia since. I also learned that if you think you’re having a heart attack, you can get up and move around. If the pain lessens or changes, it’s probably not your heart.

Since the diagnosis of metastatic neuroendocrine cancer was confirmed in January, I have been experiencing several new kinds of insomnia. Unfortunately, most of them are related to pain. There’s the snakes in my belly that were the early harbinger of the cancer. There’s a pain in my upper back that I really think is my poor old liver quivering from repeated insult.

There’s an ache in my heart that sometimes flips into rage when my powerlessness crosses the threshold of my awareness. The post-surgical hernia, despite my best efforts, has grown as big as my left tit and is quite a bit more firm. It hurts if I do too much. These past few weeks I’ve had a constant headache and feel like throwing up most of the time, and all of these aches and pains are amplified after midnight.

So I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should. But the idea that sleep is something I’m entitled to doesn’t hold water anymore. I’ve had an important revelation:

I really was sick, all those nights I thought I was dying. In spite of my first-class health insurance, in spite of my faithful adherence to Western medicine, its skewed values and narrow perspectives, in spite of a fine education and my white skin and my privilege and my clenched-teeth determination to wrest what I want out of life, that system missed a simple case of ulcers, then misdiagnosed cancer as an emotional problem. Complicated my recovery with poor post-surgical care and then, again, misdirected my pain and channelled my shame to work against me.

My pain is real and my shame is unnecessary. In fact, millions of women just like me, throughout history, suppress their pain, or report their pain and are ignored, minimized, shamed for listening to their bodies and reaching out for help and health. So it’s okay to stay awake during these wee hours. Maybe even necessary. Because there is somebody else out there, struggling with pain and shame and fear. I’ll sleep when I’m dead. Tonight, I’m with you.

This is me, asking for help.

Hey, is this your image? Artist unknown but appreciated. Stencil on concrete, circa 2013 From my camera.

Hello, my friends. It’s been confirmed. I have fourth stage pancreatic cancer, a type of rare and relatively slow-growing neuroendocrine tumor. The five-year survival rate is 20-25%. I’m getting care at Emory University’s Winship Cancer Center in Atlanta; they have a specialty clinic for this type of pancreatic cancer. I am praying and scheming to make my personal 5-year survival rate 100% and you are already drafted as a co-conspirator.

I’m so very fortunate in so many ways! I’m frequently staying with Michael. His new place in Atlanta’s Westside is comfortable, convenient and cat-equipped. I have a decent chunk of life insurance and short-term disability resources, due to my early adventures in advertising (I sold myself on the idea while creating the advertising for it, an occupational hazard). But these benefits take time to line up.

For a year now work has been difficult and symptoms like pain, diarrhea, nausea and vomiting have made writing to deadline stressful. Since my surgery in October, narcotic painkillers keep some pain at a distance, but with the unfortunate side effect of distancing myself from my brain as well. These same issues, plus geographic distance, are complicating my ability to earn from my other business, hosting international medical students for 3-6 month stays.

So I’m asking for that kind of help, too. Financial. If you can kick in a few bucks, I would really appreciate it. I’ve been shitty my whole life about writing thank you notes, but I will post a thank you note of at least 1,000 words for every $350 raised. I love you.




Love Wins

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Michael and me at Dragon*Con in September.

Every year, my parish family compiles a book of Lenten Meditations. We’re each asked to read and reflect on the day’s assigned scriptures from the Old Testament, the New Testament and the Gospel. This year, I chose to write about the epistle: 1 Cor. 13:1-13. Here’s what I wrote:

Choosing between the readings assigned this year was tough. I want to share with you that the voice of God from the burning bush was actually the voice of Charlton Heston, Moses’ own voice, as portrayed in the classic “The Ten Commandments.” I’d like to talk about how I struggle with belief, like the boy’s father from the Gospel reading, and how his cry “I do believe, help me overcome my unbelief!” resonates for me. But that would be too easy.

Instead, here’s a confession: every time I hear those verses from Corinthians, for almost thirty years now, I gnash my teeth or cringe or crumble a little around the edges. I can’t love people like that. I can’t be always kind or eternally patient; I get angry without cause. I hold grudges. This winter, by God’s grace, I keep reading. I’ve spent so long being angry at St. Paul for pegging me as less than perfect, I’ve missed the rest of the story.

Every time I hear those verses from Corinthians, I crumble a little around the edges. I can’t love people like that.

What has come to me, softly, gently, is that God is describing Her feelings for me. God is telling me I can know everything, endure all hardship, even move mountains, but it means nothing until I know in my heart and my head just how perfectly I am loved. Love is the key.

A friend of mine was photographed last year holding a sign saying simply “Love Wins.” When I saw those words, my heart expanded three sizes or more, just like the Grinch. (I’ve already confessed my commonalities with that mad, sad green creature.) Forgive me, deep thinkers and theologians. That’s my spiritual core in two words: Love wins.

If it’s human love, it will be flawed. No matter how desperately I might strive for it, I can never be anything other than human in this life. I hurt people; people hurt me. I can work to love myself better, I can try to be a more loving sister, daughter, friend, mother, but I will fail, at times spectacularly, just like everyone else.

But leaning into God’s love, I’m discovering a love that never fails. One which “…always protects, always trusts, always hopes, always perseveres.” At precisely the right time in my life, in the winter of 2016, I have shed a little more resentment, looked deeper into my fears, glimpsed, dimly, that which I have yearned for all my life. I am fully known, and perfectly loved. Love wins.

30A: A Love Story

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This is the cover photo for Good Grit’s first issue; 30A A Love Story is the cover story and I’m proud of it!

I’m honored to be a part of a new magazine of the South, called Good Grit. If you’re not familiar with it, please check it out in print, or online. Buy a subscription. It’s beautiful. The Harvest issue has just been published and it’s a keeper too.

 

By Karyn Zweifel

My mother was born near the geographic center of the continent, oldest child of a teacher and a mail carrier, about as distant from the sea as it is possible to be. Surrounded by waves of golden grain as far as the eye could see, she dreamed of the ocean, endless ripples of blue fringed with white. When she finally made it to the seashore at age 22, it was in reality a homecoming; “I knew when I saw it that that’s where I came from,” she says. “I just cried, it was so beautiful.” To this day she feels more connected to the universe at water’s edge than anywhere else on earth.

Continue reading 30A: A Love Story

God’s Grace In Neon Letters

Clear Creek in God's Back Yard
Clear Creek in God’s Back Yard

by Anonymous

with Karyn Zweifel

From Recovery Campus Magazine, Summer, 2015

I am no stranger to the disease of alcoholism. I have two aunts with many years in recovery and a brother still struggling. So when my husband and I visited our oldest son, Andrew, during his first semester of college out of state, I was very concerned about his behavior.

“…now I understand how the stigma of addiction and mental illness causes so much pain. Parents need to be more open, be willing to say ‘I’m really struggling,’ and get help for themselves and their children.”

He’d joined a fraternity, and during our visit, my mother’s intuition kicked in. I could tell it wasn’t just the normal college drinking experience. Andrew was secretive, and what we saw at the fraternity house was alarming. Andrew did not do well academically that first semester but convinced his dad to give him a second chance.

Continue reading God’s Grace In Neon Letters

It’s Simple, But Don’t Let Anybody Tell You It’s Easy.

 

Have you ever heard the piebird sing?

“Until and unless there is a person, situation, event, idea, conflict, or relationship that you cannot ‘manage,’ you will never find the True Manager. So God makes sure that several things will come your way that you cannot manage on your own.”

–Richard Rohr, Breathing Under Water

The bestseller Breathing Under Water was republished in 2011. A companion journal will be published in late July, with reflections, discussion questions, and room for notes as readers explore the idea that we are all addicted to something
The bestseller Breathing Under Water was republished in 2011. A companion journal will be published in late July, with reflections, discussion questions, and room for notes as readers explore the idea that we are all addicted to something

These simple words are likely to strike a chord of recognition in almost every human being. Rohr, known world-wide for his focus on transformational and mystical traditions, has written more than twenty books about spirituality, recovery and relationships, and his writing style is straightforward and concrete.

Continue reading It’s Simple, But Don’t Let Anybody Tell You It’s Easy.

Redemption Takes Wing

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Kai, Corey and KJ visited Zion Cemetery in June 2015 and left just the right gifts for Papa C’Mere. RIP!

2/18/15

My sister and I buried my father’s ashes on a cold gray day last spring. We were at Zion Cemetery in Blaine County, Oklahoma, not too far from the farm my family settled illegally and then claimed in the Oklahoma Land Run of 1889. You can see two sets of grain elevators from the graves of my grandmother, great-grandmother, great-aunts and now my dad. There’s not much else to see other than the ever-changing sky, a tiny abandoned church and an honest-to-God outhouse with a crescent moon carved into the rough wooden door.

It was really cold. Two days before, I had stared in amazement as snowflakes spiraled down outside the window. I had planned to camp out; it was the second week in April and who would expect snow right before Easter? On Palm Sunday, I sat in church and felt the earth tremble; an earthquake, my aunt told me brightly, a common occurrence in Oklahoma these days. A few hours later, the tornado sirens howled; a twister was tearing up the plains somewhere south of town. Oklahoma felt apocalyptic last April.

We scraped some dirt over the urn. A prayer would have felt pretentious. I’m not sure my dad even believed in God when he died. My sister and I held hands and sang a chorus of “Amazing Grace,” the wind snatching the notes off our lips.

It was too cold and I was out of kilter. We poked our heads inside the abandoned church; the windows were long gone, leaving only four walls of rough whitewashed brick and a rusty tin roof. Animal droppings littered the empty structure, huge, bigger than my thumb. The thought of an animal that size was frightening.

Two days later it was Good Friday, bright and warm. I was facing a sixteen-hour trip south, but Zion Cemetery called, and I obeyed my instincts.

On my way out of town, I heard bells. It was noon. My lovely little church in Birmingham has a most solemn Good Friday Service at noon; it begins with the church stripped bare of all its banners and fancy drapery and the clergy lying full-out face down on the floor around the altar.

Again an inner voice whispered, just as I passed a church. I pulled into the parking lot and crept inside, late for the noon service. They were reading the Passion Gospel and a lady in the back smiled at me when she handed me a bulletin. As we read the familiar story of Christ’s trial, persecution and crucifixion, my world and my heart began to settle into a rhythm: powerful, soothing and good.

My spirit was almost light as I left the church, and I stopped at a store to assemble a funeral feast. I got two pieces of cake, some bright ripe fruit, a little cheese, a styrofoam cup of macaroni and cheese. On an impulse I grabbed a handful of chunky, beaming sunflowers.

It took an hour to drive north of town, west down the highway past the grain elevators, then bump down the dirt road to the cemetery bounded by a rusty, sagging fence. It looked vastly different, which makes perfect sense: when the sky is nine-tenths of the display, a vivid blue infinity is a remarkable transformation from a lowering blustery gray.

I had a book with me, a funny one, by Terry Pratchett. I spread out a blanket under a splintery old cedar and read my book and laughed out loud. It felt good to laugh. My dad has a wicked sense of humor and he loved to read. I slowly ate half a piece of cake, savoring the joy of my dad’s sweet tooth and a family tradition of “dessert-first day.” I breathed, deeply: cedar, dirt, sky.

Now my heart was so light I was almost skipping. I scattered a few crumbs of cake a few feet away from the tree and invited the ants to my banquet. I laid the sunflowers in a row on the family graves and they smiled back at me: great-grandmother, grandmother, aunt, aunt, father.

I remembered I had a kite tucked away in my camping gear, and that endless sky cried out for a kite. I couldn’t get it up in the air; I have no talent for aerodynamics. But I tethered the string to the gravestone and it kicked around on the ground, yearning for the wild blue yonder. I sang a song from my favorite movie; it felt so good I sang another song, a Bible-thumping camp song from my father’s youth. I remembered his eyes match the Oklahoma sky on a bright spring day.

I thought, for no particular reason, of things that frightened me and decided to look inside the old church one more time.

I remembered the warmth leaving my father’s hands as I wept and let him go.

I leaned into the empty window frame of the old Zion Methodist Church and heard a storm of wings and wind and watched, transfixed, as a Great White Owl burst from the rafters, paused, as if posing for a snapshot, and whirled out the opposite window, an angel of a different kind.

I laid my daddy’s ashes to rest on Good Friday last year. Today, as Lent begins, I wonder where my journey leads me now.