Notebook: My Character Clemency Begins Chemo

Editor’s note: In the months since I last wrote to you at Joyous Paradox, I have begun a novel. Four women meet and bond in a healing garden, a cancer support center modeled after the Virginia Thurston Healing Garden in the town of Harvard, MA. GrubStreet Creative Writing Center has given me a scholarship to the Novel Generator, a nine-month program for writers working on their first draft. In the following excerpt, Clemency Weems, a Boston widow in her mid-sixties, has begun chemotherapy for metastatic breast cancer. In this scene, she is imagining what she will talk about in a support group at the garden. — MAB

Rogier van der Weyden, Descent from the Cross (detail)What story will Clemency tell today? A chemotherapy treatment regimen comes with its own built-in narrative arc, no matter how changeable the side effects, no matter how variable the outcome.

First you enter the cave, then the poisons are pumped into your body, and then you go home to await the symptoms, which could be fatigue, nausea, vomiting, chills, fever, diarrhea, itching, weakness, mouth sores, dizziness, tingling and numbness in your feet, or a profoundly convincing sense that you’re better off dead. Or that you’re dying. Or that you’ve abandoned your Life, like abandoning a small child in the middle of a crowded street fair.

You float above the crowd at the fair, watching your Life scan the strangers’ legs and call out for her mom.

“Mommy, where are you?” she screams. She cries, her face pinched tight around her eyes/nose/open-and-astonished mouth.

Someone comforts her, arm around her shoulders, and rubs her back, the flowered cotton dress soaked with sweat between her young shoulder-blades. She buries her face in the Comforter’s broad shoulder.

Then, Kleenex administered, trip to Porta-Potty completed, your Life stands hand in hand with the Comforter at the fried-dough stand. Powdered sugar or maple syrup? Both? Both.

Where is your Life when your body reaches the nadir? More precisely, the nadir is the point at which the chemo drugs have killed their maximum number of white blood cells for this cycle, as well as their maximum number of cancer cells and red blood cells, and swift-dividing cells in your mouth, digestive tract, and hair follicles. Fewer white blood cells mean that your immune system is at its weakest.

For these few days of nadir, you stay home, avoiding crowds, imploring your family and friends not to come if they have colds or other infections.

Do you have to worry that your daughter-in-law Rhonda, who makes no secret of her frequent yeast infections, will use your toilet and leave little yeast organisms behind to attack you from within?

Albrecht Dürer, Portrait of Barbara Dürer, Dürer's Mother (detail)Is your use of disinfectant wipes compulsive yet? Or do you pray before grasping the glass knob on your bathroom door that everyone has washed their hands thoroughly before leaving the facilities? Is your Life in isolation, that young creature in flowered cotton, cared for by masked and gowned attendants?

Finally, the hoped-for recovery. Symptoms recede. One morning you wake from restful sleep. You and your Life, joined in one shaky body. Unutterably weary. Unutterably relieved. Yet the ground is no longer the ground, the stone no longer the stone. You float in the knowledge that true North is no longer true.

– Mary Ann Barton, 9/24/2016

Notebook: Opal’s Madonna

Madonna and Child, German, 16th century, Metropolitan Museum of Art

Madonna and Child, German, 16th century, Metropolitan Museum of Art Hewitt Fund, 1911.

Another Friday morning. Mim showers in Opal’s salmon-pink bathroom. The smell of Cameo brand soap, wet in her hand, reminds her of kissing her mother-in-law’s fragrant cheek.

Already, though Opal has only been gone for a week, Mim craves her sturdy kindness, her laugh billowing out over the dining table like oceans of acceptance. When Opal opens her side door — nobody but the mail carrier uses her front door — she greets you with the heedless energy of a rough-coated dog who has waited all afternoon for your return. A short, wide woman, her hands wet or floured, a drift of her gray hair falling out of its bun, her sensible shoes polished black and sprinkled with flour. She waves you into her kitchen and bends down to open the oven, where baked cinnamon apples burst out of their skins.

How could a woman like this have died? How could she have faded away? Opal, a woman as lavish in her affection as anyone you’ve met. Shrewd, mind you: an eye for a sound bargain. Mim can see where her husband, Opal’s son, got his head for business.

Mim shuts off the water. She steps out of the shower onto Opal’s plush bath mat. She dries her sad self with a striped beach towel, blows her nose, and shimmies into a set of underwear. Black pants, black top; salmon-pink socks, in honor of Opal, the lover of all warm colors: orange, marigold, cerise.

Then, at the breakfast table: “Sweetheart,” Mim says to Arnold, “shouldn’t I bring the Madonna to the funeral home? I want your mother to feel comforted. Those parlors at McMurphy’s are so impersonal.”

Opal had brought the Madonna home from Austria after the war, along with other treasures she’d found in antique shops in Salzburg. Her husband, Arnold’s father, was stationed there with the U.S. Army of Occupation after the German Reich surrendered. In the chaos of war, so many families had sold their treasures. The Madonna and Child, a devotional figure twelve inches high, was probably German, the antique dealer said, perhaps 18th century, polychrome on walnut.

“I’ll find you a box to put her in, Mim,” Arnold says, shoving his chair back from the table. His mother’s cardboard box collection, like other repositories of useful items, is in the basement.

As Mim lifts the Madonna down from the bureau in Opal’s bedroom, she sees that the Virgin Mary could be any young mother. Her watchful gaze; the mild gesture of her baby’s hand reaching out toward the visitor.

Underneath the statue Mim sees a deep gouge in the base that shows charred wood inside. Has the Madonna come through fire, or been treated roughly for an invasion of wood-boring insects? The unpainted surface on the bottom has darkened, over the centuries, to the color of roasted chestnuts. On the Virgin’s neck, where paint has flaked off more recently, the raw wood glows a soft umber.

Who else, Mim wonders, has prayed before this figure of the Virgin and her son? Who else, praying or reminiscing, has wept for kinfolk lost to old age, war, or execution in the street?

“I am not myself a believer,” Mim says now to the Madonna, “but Opal believed. She loved you; she loved your son. Give her peace.”

Spoken out loud in the quiet room, the words bring Mim a sense of relief so vivid as to be almost tangible. It’s as though nothing else matters. Only this moment. Only one woman, breathing and remembering love.

— Mary Ann Barton

 

 

Notebook: Angels

Editor’s note: “Angels” is an excerpt from a short story about family caregiving that I’m writing for my book, Rest. I began it this fall in Eson Kim‘s Fiction I class at GrubStreet Creative Writing Center in Boston. In this excerpt, we meet Arnold Davies, who is just waking up from surgery, and his wife Mim. — MAB

Chanson de la plus haute tour (II) by Airair, 2007.

EYES FLUTTERING OPEN, ARNOLD IS ON THE DIM EDGE OF FREAKING OUT.

On a Friday afternoon just before Christmas, Arnold wakes up from cardiac bypass surgery, gasping, in one of those high-tech hospital cribs with pushbutton-this and bellringing-that.

Eyes fluttering open, he’s on the dim edge of freaking out, which God knows is a perfectly reasonable response to waking up on a ventilator with a massive bandage on his chest, a tube down his nose, an IV in his hand, and a raging thirst. The first thing Arnold tries to do is swallow – a gulp of panic – but he can’t do it because of the ventilator tube in his throat.

Aagh, he thinks. Aagh! His mind generates the kind of dazed roar that precedes distinct thought. He’s in pain and he can’t swallow, can’t call out for help, and can’t even turn his head. There’s a whole lot of beeping going on. In his head he thinks something, perhaps Oh God, or Mim? Mim?

“Mr. Davies, I see you’re awake.” A woman with an angelic cloud of hair has appeared at his bedside. “You’re in cardiac surgery intensive care and you are doing just fine,” the angel says. “Your surgery is over.” Arnold blinks. The angel smiles a practiced smile.

“Mr. Davies, can you squeeze my hand?” asks the angel. “Good. Wiggle your toes? Terrific. Ok now, I want you to follow my finger with your eyes. Follow it back again. Good. Now, are you in pain? Nod if you’re in pain.”

Arnold nods. His left hand quivers and tries to raise itself, but it’s tied down. Tears escape Arnold’s eyes and slide down his cheeks; he’s mortified. His nose drips.

 Head of the Virgin in Three-Quarter View Facing Right by Leonardo da Vinci

“WE’RE GOING TO GIVE YOU SOMETHING FOR PAIN.”

“We’re going to give you something for pain,” the angel announces. There’s an indeterminate flurry of activity. Someone wipes his cheeks and blots the drips coming out of his nose. “You’re on a ventilator,” the angel says, “so you won’t be able to talk. You’re doing just fine.” Seconds later, he feels blessed relief steal past his ribs into the core of his being. He slips back into the deep.

In the ICU, time passes. Techs, nurses, docs, visitors, kitchen staff swirl down the hall past Arnold’s room. From time to time, someone disturbs his sleep.

Then: “Arnold, honey, it’s Mim.” Arnold stares up at her face, feels his wife’s hand stroking his hand. Briefly, her hair touches his neck.

Mim, he thinks. Tears slide out of his lids. Mim, I need a drink, he thinks. Her fingers wipe the tears down over the pale surface of his face. Her hand strokes the hair on his head, slides around to touch his cheek.

“Wounds heal from the inside out,” Dr. Binh said to Mim in the waiting room after surgery. “Absolutely at this moment, and at every moment since I made the first incision, your husband’s brain and tissues have been directing billions of cellular procedures aimed at stopping the bleeding and repairing the damage. These cellular repair procedures are programmed in us by DNA. All we need to do is breathe and wait, or, in Arnold’s case, allow the ventilator to breathe. Just be in the moment.”

In this moment, Arnold weighs the pressure of his body on the bed; Mim’s hand on his; electronic sounds; the wedged feeling in his throat. A slow-moving awareness begins to reduce the roar in his head.

Head of a Negro by Peter Paul Rubens

“BREATHE DEEPLY, ARNOLD,” THE NURSE SAYS.

New angel: a man with dark hands and fingers, a Caribbean voice.

“Arnold,” the nurse tells him, “we’re going to remove your ventilator tube and give you a try at breathing on your own.” It feels like somebody’s pulling a hose out of his throat, fast.

“Breathe deeply, Arnold,” the nurse says. “That’s right, breathe in and then breathe out again.” The machines change their pattern of beeps. Arnold breathes. His throat burns when he swallows but it feels so good to be able to swallow, even though the thirst consumes him. Someone feeds him ice chips; a blessing.

Now that the breathing tube is out, Mim has been allowed back into Arnold’s room. She sets her carryall bag on the floor and sighs down into the chair, twitching her thin yellow infection control gown over her clothes. Her hands smell of disinfectant gel.

Woman Embroidering by August Macke, German, 1909.

DEAR ARNOLD, MIM THINKS, DO YOU REMEMBER THAT SONG ON THE RADIO WHEN WE MET?

Dear Arnold, Mim thinks, Do you remember that song on the radio when we met? She remembers their wedding ceremony at her grandmother’s church in Chicago, her triumphant smile as she processed down the aisle towards Arnold on a gust of bridal pride.

“Can I have some water?” Arnold has wakened.

“Let’s sit you up,” says the nurse. “Hold this to your chest.” He hands Arnold a heart-shaped cough pillow and presses buttons. The head of the bed raises a tad. Oh, God! Something clotted surges downward in Arnold’s chest.

“You’re ok, Arnold,” the nurse tells him. “It’s ok, your chest tube will get rid of the fluids. You’re safe.” He turns to Mim: “You can give him ice chips, but just a couple at a time.”

“Of course,” says Mim. She finds herself breathing in unison with Arnold, as if they’re engaged in some joint venture that requires the highest levels of corporeal coordination. Hearts and lungs have never felt more precious, nor angels’ voices nearer.

— Mary Ann Barton

Image credits (from the top): Chanson de la plus haute tour (II) by Airair, 2007, via Wikimedia. * Head of the Virgin in Three-Quarter View Facing Right by Leonardo da Vinci, Italian, 1508-1512, via Metropolitan Museum of Art, Harris Brisbane Dick Fund, 1951 (51.90). Head of a Negro by Peter Paul Rubens, Flemish, ca. 1620, via Wikimedia. * Woman Embroidering by August Macke, German, 1909, via Wikimedia.

Cool Tools: The Steal Like an Artist Journal

The Steal Like an Artist Journal by Austin CleonJoyous Paradox readers know that two of my favorite tools for caregiver wellbeing are creative self-expression and comic relief. Writer Austin Kleon’s new Steal Like an Artist Journal: A Notebook for Creative Kleptomaniacs offers us ample room for both. This graphical playground-in-a-book is packed with prompts for comic as well as serious journal entries. Take it with you and write, sketch, doodle, improvise away!

Today, I’m sharing a pair of entries from my journal with you. My choice of theme: cats vs. dogs. Which tip jars would get your money if you saw them on your favorite coffee shop’s counter? Check out Instagram for more #stealjournal photos.

Barista Tip Jar Page

Steal Like an Artist Journal Tip Jar Page

Barista Tip Jar page from Austin Kleon’s Steal Like an Artist Journal. Today’s theme: cats vs. dogs.

Tip Jar Sketch Page

Tip Jar Heart #1 by Mary Ann Barton

Mary Ann’s Tip Jar Sketch Page offers an expanded version of her Barista Tip Jar page from Austin Kleon’s Steal Like an Artist Journal. What gets your heartfelt vote? Cats, dogs, gerbils, or budgies?

 

 

Washing His Bright Hands (I’ll Fly Away)

Study of Hands by Egon Schiele

Study of Hands by Egon Schiele, Austrian, 1921, via Wikimedia Commons.

Mmm, hmm. Mmm, hmm. Song’s in my breath this morning, dear heart. “Some bright morning, when this life is over, I’ll fly away.”

Here’s the basin, dear heart; here’s the soap, the towels. “To that home on God’s celestial shore, I’ll fly away.”

So, dear heart, let me take your hand. You wake? Morning time, sir. Your eyes open; good. You sleep okay? Good, good. You remember me? Mary Ann? Right, I’m your aide, here to get you up for breakfast. You hungry? Get you some coffee soon, black and hot like you like it. First wash up a bit. Freshen up, start the day out right.

Ah, this man’s bright hands. When I hold his right hand, his skin is translucent. I see through it like cellophane over one of those hollow decorated eggs. You peer inside at frost flowers, you see blue veins; you see tendons flex and stretch, bones lift and bend and twist. Each joint, a full knot, moves slippery in my hand, soapy lavender smell washing away that night-bloom sweat. Flesh at the curved edge of his palm like putty rolled between silk.

When you get to this age, all human hands come down to this: bone under silk, my hands in blue vinyl gloves holding and turning his hands, passing the washcloth over the skin like polishing silver for Thanksgiving table. Silver and mica and blue and bone. Body heat. Lavender. My eyes fall over his hands, his eyes, his winged and naked shoulder. Silence; his ragged breath; the ringing in my ears as of distant and unearthly bells.

“I’ll fly away, oh glory, I’ll fly away (in the morning). When I die, hallelujah by and by, I’ll fly away.”

— Mary Ann Barton

The song is I’ll Fly Away (O Brother, Where Art Thou? Soundtrack) by Gillian Welch and Alison Krauss. The date is September 11.

Arnold Sacks: A Portrait by Summer Pierre

Oliver Sacks: An Artist’s Tribute

Taking The World Into His Arms

by Summer Pierre

An Anthropologist on Mars: Seven Paradoxical Tales by Oliver SacksAs almost everyone knows, we lost the great writer and neurologist Oliver Sacks on Sunday.  His books were enormously important to me.  He had been on my family’s bookshelves for years, and had been spoken of with such reverence from my folks, that I felt I knew him before I had read anything. Then while recovering from surgery on the couch at my folks’ place, I picked up An Anthropologist on Mars and immediately fell in love with essays.  It was clear from the first reading that he was a man who was deeply curious and delighted by all he encountered in the world.  I never came away from his books without feeling that the world was totally broken open to me in a new way.

I will probably re-read one of his most recent meditations on dying several times throughout the rest of my life to remember how powerful the human experience is–even at the end, which Sacks described so vividly and with love.  Like every one else, I followed any and all inklings to his failing health after his announcement in February of his terminal condition.  My husband Graham was the one who broke the news to me and was not surprised when I cried openly upon hearing it.  I said, “I don’t think there is anyone I’d rather hear more from on what dying is like.”  Graham, without missing a beat, said: “I think he would love to tell us about it if he could.”

I think of him in these lines of the Mary Oliver poem “When Death Comes”:

When it’s over, I want to say: all my life

I was a bride married to amazement.

I was the bridegroom, taking the world into my arms.

May we all be so fortunate to be so alive and awake to the surrounding world while we are here as he seemed to be.

Summer Pierre: Self-PortraitSummer Pierre is a cartoonist, illustrator, writer, and teacher in Highland Falls, NY. You can read her autobiographical comic series called Paper Pencil Life at her blog, Studio of Summer Pierre. This post is reprinted with her permission. — MAB

Dementia Talk #2: Props

How can we bring lightness and pleasure to our interactions with people with dementia? I like to use props, which can be any durable object suitable for show-and-tell.

Introducing a new object to a person living with dementia can spark their attention and stimulate curiosity. If the item means something special to you, that can help, too, since it will bring greater emotional depth to your encounter.

Here are three examples of items I like to bring with me when I visit someone with Alzheimer’s disease or another condition affecting memory or thinking.

The Octaband®

An Octaband® is a colorful fabric exercise tool to play with, indoors and out. The inexpensive, stretchy device comes in small (8-arm) and large (16-arm) sizes. When you play one-on-one with a partner, you position yourselves on opposite sides of the center circle and hold a colorful arm of the Octaband in each hand. The extra arms wave in the breeze — somewhat like flying a kite.

Octaband.com

The Octaband® is a colorful, stretchy, fabric exercise device developed by dance/movement therapist Donna Newman-Bluestein, DMT-BC, LMHC. It can be used in pairs or in a group. Photo from Octaband® LLC.

Octaband.com

Anyone can enjoy using an Octaband®. The silky fabric loops around the wrist, feels good in the hand, and encourages rhythmic stretching. Try it with music or sing as you play. Photo from Octaband® LLC.

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Hometown Photographs

When I get to know someone with dementia, I like to bring photos of the town where they grew up. Is it easier to recognize buildings than faces? I don’t know, but I’ve had some lovely chats with clients who remember going to the movies at the theater on Main Street or hearing summer concerts at the gazebo in the park. I download photos from the Internet to my smartphone or a tablet for easy sharing, but you could also have a copy shop print and laminate them.

Goodman Library, Napa, CA

The Goodman Library was my favorite building as a child in Napa, CA. It’s now the county historical society and on the National Register of Historic Places. Photo from NoeHill Travels in California.

Goodman Library in 1938, Napa, CA.

The Goodman Library in 1938. Napa County Historical Society photo from the Napa Valley Register.

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Lap Labyrinth

The labyrinth is an ancient design experiencing renewed popularity today as a platform for stress reduction. A lap labyrinth is a wonderful, portable alternative to the patio-sized or larger labyrinth for walking meditation. I coach my clients to hold the breathe as they move their fingers slowly along the grooves of the device, tracing the curves back and forth until the center is reached and then coming back out to the edge again. I support people in going at a faster pace if that seems more natural. It’s also fine to skip from one groove to another. Any path can bring this unusual object to life for a curious explorer.

A Pine Lap Labyrinth from Stress Resources.

Holistic nurse Pamela Katz Ressler, RN, MS, HN-BC, offers handcrafted pine labyrinths at Stress Resources. The lap labyrinth, also called a finger labyrinth, is a portable device used for stress reduction or meditation. Simply trace the grooves with your finger as you breathe gently. Notice the subtle sensations of touch, texture, pressure, movement, light, color, shadow, and even sound. Photo from Stress Resources, Concord, MA.

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What’s Your Experience with Props?

Do you use props as you interact with the person with dementia in your life? What works best: something familiar, or something new? How has this changed over time? Feel free to share your experience in the comments below. Or write me at mabartonst [at] gmail [dot] com. — MAB, August 9, 2015

PS: I offer examples of specific products based on my success in using them in my professional work with home-care clients. I am not not receiving any compensation for mentioning them.

Related: The first post in this series is Dementia Talk, already the top post in Joyous Paradox for 2015.