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.

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.

Dementia Talk

Editor’s note: What’s the most popular post on Joyous Paradox, my elder-care blog? How to Say Hello to Someone with Alzheimer’s Disease ranks way at the top. As a professional caregiver, I’ve had the privilege of working with many folks with dementia over the years. I learn more about the nuances of human communication with every encounter. In the coming months, I’ll be sharing tips for strengthening our bonds with those affected by memory disorders. Let’s begin the conversation with a superb overview of dementia communication strategies from England’s National Health Service. — MAB

Communicating with people with dementia

Grandmother and Grandchild by Lovis Corinth, German, 1919

Grandmother and Grandchild by Lovis Corinth, German, 1919, via Wikimedia Commons.

Dementia is a progressive illness that, over time, will affect a person’s ability to remember and understand basic everyday facts, such as names, dates and places.

Dementia will gradually affect the way a person communicates. Their ability to present rational ideas and to reason clearly will change.

If you are looking after a person with dementia, you may find that as the illness progresses you’ll have to start discussions to get the person to make conversation. This is common. Their ability to process information gets progressively weaker and their responses can become delayed.

Encouraging someone with dementia to communicate

Try to start conversations with the person you’re looking after, especially if you notice that they’re starting fewer conversations themselves. Ways to encourage communication include:

  • speaking clearly and slowly, using short sentences
  • making eye contact with the person when they’re talking, asking questions or having other conversations
  • giving them time to respond, because they may feel pressured if you try to speed up their answers
  • encouraging them to join in conversations with others, where possible
  • letting them speak for themselves during discussions about their welfare or health issues, as they may not speak up for themselves in other situations
  • trying not patronise them, or ridiculing what they say
  • acknowledging what they have said, even if they don’t answer your question, or what they say seems out of context – show that you’ve heard them and encourage them to say more about their answer
  • giving them simple choices – avoid creating complicated choices for them
  • using other ways to communicate – such as rephrasing questions because they can’t answer in the way they used to

The Alzheimer’s Society has several information sheets that can help, including ones on the progression of dementia and communicating.

Communicating through body language and physical contact

Communication isn’t just talking. Gestures, movement and facial expressions can all convey meaning or help you get a message across. Body language and physical contact become significant when speech is difficult for a person with dementia.

Communicating when someone has difficulty speaking or understanding can be made easier by:

  • being patient and remaining calm, which can help the person communicate more easily
  • keeping your tone of voice positive and friendly, where possible
  • talking to them at a respectful distance to avoid intimidating them – being at the same level or lower than they are – for example, if they are sitting – can also help
  • patting or holding the person’s hand while talking to them can reassure them and make you feel closer – watch their body language and listen to what they say to see whether they’re comfortable with you doing this

It’s important that you encourage the person to communicate what they want, however they can. Remember, we all find it frustrating when we can’t communicate effectively, or are misunderstood.

Listening to and understanding someone with dementia

Communication is a two-way process. As a carer of someone with dementia, you will probably have to learn to “listen” more carefully.

You may need to be more aware of non-verbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smile as well as speaking. The following tips may improve communication between you and the person you’re caring for.

Active listening

When communicating with someone with dementia, “active listening” skills can help. These include:

  • using eye contact to look at the person, and encouraging them to look at you when either of you are talking
  • trying not to interrupt them, even if you think you know what they’re saying
  • stopping what you’re doing so you can give the person your full attention while they speak
  • minimising distractions that may get in the way of communication, such as the television or the radio playing too loudly, but always check if it’s OK to do so
  • repeating what you heard back to the person and asking if it’s accurate, or asking them to repeat what they said
  • “listening” in a different way – shaking your head, turning away or murmuring are alternative ways of saying no or expressing disapproval

This article contains public sector information licensed under the Open Government Licence v3.0

Portrait of a Lady as the Magdalen by Master of the Female Half-Lengths

Dear Emma: Snappy Letters to My Alter Ego

Portrait of a Lady as the Magdalen by Master of the Female Half-LengthsEditor’s note: From time to time I share my writing process with readers of the Joyous Paradox blog. Today’s post is about my literary character Emma Davies, who began showing up in my notebook when my son Edward was in elementary school. (He’s now 35.)

“Who are you, Emma Davies?” I asked her, when her name first slipped into my consciousness all those years ago. “Why do you feel so familiar?”

Back then, all I could see of Emma’s life was the title of a story, “Emma Visits the Wise Woman.” It’s a story I hope to write one day. In the meantime, I often write to Emma in my notebook. Here’s a recent sample, edited and extended for clarity. Hope you like it. — Mary Ann Barton

Girl Writing by Franz NölkenSunday, June 7, 2015

Dear Emma,

It’s crowded and noisy here in the First Parish parlor. Small boys bounce up and down on the antique sofa. They hop off and drop to the oriental rug on the floor.

“Let’s say goodbye to Nana,” says a mother to her son.

“Bye, Nana,” the little boy mumbles.

“Nana can’t hear you,” his mother says. “It’s very loud in here.”

“Nana!” he yells, tugging his grandmother’s sleeve. “Goodbye, Nana!”

I’m writing this letter to you while I wait for Steve to finish chatting with the ministerial intern. I’d like to go somewhere quiet and write my author bio to share with Susan and Stephanie when we meet at Dumpling Daughter tomorrow to talk about book marketing.

Essayist Mary Ann Barton has taken full advantage of the opportunities life offers for failure and rebirth. Working as a rare coin dealer, arts agency desk-jockey, lobbyist, textbook proofreader, and library fundraiser, she found her niche in her fifties as a certified nursing assistant and companion to elders. Her work in progress, a trilogy of self-help books called Rest, Renewal, and Repose, will help family caregivers of all ages get back to sleep when worrying about a loved one who is very old, very young, or facing serious illness. She blogs about caring for ourselves as we care for others at JoyousParadox.com.

Portrait of Lola Braz by Zinaida SerebriakovaHere’s what I write about, Emma: How we live with others. How we live with ourselves. I’m writing a peach of a book for family caregivers. I want you to pick up Rest in the middle of the night when your old dad or your tiny child is safe in bed. Find tips and techniques for caring for your body, mind, and soul. Read a poem about a garden, a grocery list, or a grandmother who plays the cello. Love a painting by Philippe Mercier. Write in your journal. Dance as you cook dinner. Stretch your arms wide with an Octaband.

Really, Emma, caring for a loved one can be full of surprises. As Facebook would say, it’s complicated.

For some of us, there’s so much accumulated hurt and resentment that the free flow of love and concern is jammed up behind a Hoover Dam of bad memories.

For some of us, love flows so freely that we can’t let ourselves even dip a toe in the reality that we might lose our dearest on earth.

Writing a Letter by Kusakabe KimbeiFor all of us, there are images, real or imagined. I look at the shifting family groups in the church parlor — women and men and grandparents and babies and five-year-olds and young girls who might be anything from ten to 17 — and see them as photographs in an album.

Maybe the photos have a matte finish like the slightly pebbled surface of an oldfashioned school portrait. Mrs. Ansell’s Second Grade. That First Vacation at Lake Sunapee.  The Balloon Flight in Southern France. Our Last Visit with Grandma Hyde.

Maybe one day I’ll see a photo or a painting, Emma, and know that this is your likeness. I can’t wait.

Love no matter what,

Mary Ann

Copy this text to tweet: Caring for a loved one can be full of surprises. As Facebook would say, it’s complicated.  #caregivers

Image credits: Portrait of a Lady as the Magdalen by Master of the Female Half-Lengths, Netherlands (fl. circa 1500–1530), via Wikimedia Commons. Girl Writing by Franz Nölken, German, 1916, via Wikimedia Commons. Portrait of Lola Braz by Zinaida Serebriakova, Russian, 1910, via Wikimedia Commons. Writing Letter by Kusakabe Kimbei, Japanese, before 1933, via Wikimedia Commons.

The Anatomy of Breathing

Movement Modalities: Dance, Housework, Breathing

Ballerina by Robert le Madec, French, 1899, via Wikimedia Commons.If dance is the poetry of motion, then writing about dance can be a way of entering our embodied experience more fully, the way a poet enters each word of the poem. With this in mind, we might take one step at a time, paying attention to one moment of mindful awareness after the other. The pace can be slow or rapid, reverent or careless; perhaps lighthearted; certainly watchful.

What do I mean by watchful? Simply that if you are dancing, you will open your mindful eyes and observe the contents of your conscious awareness from one breath to another as you turn your right toe out and step to the side. You will also feel the way the sacrum guides your hip to rotate the leg, while your thigh opens out, just slightly, as the spine turns. The breastbone lifts the ribs and your weight shifts into the step, with the music already flowing along with your body, carrying you into another place, another step, another rotation.

And within the ribs beats the heart, nestled in the cardiac notch of the left lung, and the heart throbs between and behind your two lungs, the lungs swell with the in-breath and yield with the out-breath.

And now, can we imagine how each in-breath draws some physical elements of the world into our bodies, while each out-breath pours some physical remnants of our bodies back out into the world?

What does it mean, I ask myself, that my body is the medium for an exchange of gases between myself and the threadbare hemlock tree in my back yard? What does it mean that my body, as I drive to work in my car with the windows down on a spring morning, serves to filter the air and give it back to nourish the trees that line the road?

“Dear trees,” I would pray out loud every morning. “Dear trees, help me to keep breathing all day, no matter how fearful I am.”

“Dear trees,” I would pray out loud every morning as I drove to my new job in publishing in suburban Boston, “dear trees, you are so beautiful. You there, you raise your branches over my head, your early buds swell at the tips in droplets of pea-green, of silky burgundy, you there, your trunks so solid, your roots deep and black-barked down in the dark, roomy soils near the river, dear trees, you are so beautiful. Help me to keep breathing all day today, no matter how fearful I am when I answer the phone.”

So simple, you might say, dear trees, it should be so simple for me to answer the phone in my cubicle, to say ‘Prentice Hall Social Studies, this is Mary Ann.’ So simple, but because I am so new, and because I don’t have the training to do my job, and because there doesn’t seem to be any system to bring me up to speed in order to complete my assignments, I am aware, as I observe my supervisor’s pursed lips and scrabble through the papers piled on my smooth, putty-colored work surface, that each day’s work is not enough work. Each answer I give to my colleagues’ questions is not a sufficient answer. Each breath I take is not enough breath.

Imagine the experiential anatomy of breathing when you work in a job you love.

Now, imagine that it is many years afterwards and I am in a job I love, for which I am profoundly qualified. Imagine the experiential anatomy of breathing when you work in a job you love, a job in which it matters that you are a kind person. Imagine the way the breath is the very embodiment of taking in kindness and giving out kindness, over and over again. Not a Mother-Teresa kindness; not something superhuman, but just an ordinary, clumsy, this-is-the-best-I-can-do kindness.

I have to breathe a lot in this job I love, as I care for elderly people in their houses, old houses full of memories and things. I breathe a lot and I’m sweaty. I have to squat and pick up dropped laundry from under the bed. I have to wash my hands in the sink in the laundry room and dry them on a terry cloth towel. But each breath is enough.

Imagine how my body dances as I fold the laundry and put it away, as I step to the right, bend, pull out the drawer, press the stack of soft turtlenecks into the drawer, shove the drawer closed, and turn and step to the left again. My limbs and spine loosen, my ribs expand and the lungs open and the heart beats faster, the breastbone shifts and flows with the spine, the tailbone rises and turns me first one way, then another.

Imagine that my ribs shelter the lungs and my breath feeds the blood and the ligaments draw the ribs together in a curtain of protection.

Breathing Ornament 04Now, imagine that you drive home from a job you love, the windows down in your car, the trees receiving your breath by the side of the road. Imagine that you learn about the experiential anatomy of breathing on the job. Imagine that you see, for the first time, the prodigies of flesh within us all.

And so, perhaps, dear ones who read and write and read again, you will experience the gifts of kindness, of life, of movement, of yielding, of letting go, of falling into bed, and breathing through the night, and drawing breath again, as you rise for a fresh love, a fresh day.

— Mary Ann Barton

Glossary for this post:Experiential Anatomy,” writes dance/movement teacher Susan Bauer, “is a creative / humanistic approach using movement, touch, drawing, partner work, and creative writing to embody and personalize your learning.  One’s experiences become the basis for understanding one’s physical body and movement potential.” I liked the clip below of famed teacher Bonnie Bainbridge Cohen demonstrating Initiating Movement from the Coccyx.

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Painting credit: Ballerina by Robert le Madec, French, 1899, via Wikimedia Commons.

Link to this post: http://wp.me/p20HD7-5BK.

Another post in Movement Modalities:  Nia Dance Poem

 

Hot Valentine’s Day

It’s Valentine’s Day. Things are heating up in our house.

1. Hot kisses.

Loving Couple (Mithuna)

Loving Couple (Mithuna), stone sculpture from 13th century India (Orissa), via Metropolitan Museum of Art, Purchase, Florance Waterbury Bequest, 1970.

2. Hot food.

Inside of a Cottage from A History of Madeira, 1821

Inside of a Cottage [detail] from A History of Madeira by “a resident of the island” (published by R. Ackermann, London), unknown artist, Madeira Islands, 1821, via Wikimedia Commons.

3. Warm cat.

Cold Nose, Warm Touch, Thermography of a Cat by yellowcloud

Cold Nose, Warm Touch, Thermography of a Cat by yellowcloud from Germany, 2011, via Wikimedia Commons.

4. Hot you, man.

Academic Study of a Male Torso by Ingres

Academic Study of a Male Torso by Jean August Dominique Ingres, French, 1801, via Wikimedia Commons.

5. The body, beautiful at any age.

Nude Old Man in the Sun by Mariano Fortuny

Nude Old Man in the Sun by Mariano Fortuny, Spanish, 1862-1863, via Wikimedia Commons.

6. Hot me, woman.

Venus with a Mirror by Titian

Venus with a Mirror by Titian, Italian, circa 1550, via Wikimedia Commons.

7. The body, beautiful at any age.

Old Woman at the Mirror by Bernardo Strozzi

Old Woman at the Mirror by Bernardo Strozzi, Italian, circa 1615, via Wikimedia Commons.

8. Hot dog! Hot Dog by Jkrane2, via Wikimedia Commons.

The Snowy Winter of 1918, New York, by Childe Hassam

Winter Caregiver Prayer

Dear Winter Caregiver, my Northern Hemisphere sleet-and-snow companion, you sliding on tiny, bouncing, translucent balls of ice in the Stop ‘N Shop parking lot, on your way to collect loaves and fishes for my dinner and yours, may you steer your way through the grocery aisles with my blessing.

In times past, I ran this errand for myself and my loved ones — able to run freely, then, though not during ice storms, remembering their preferences for golden raisins or pumpernickel bread, wheeling my cart past the lettuces (now a swallowing hazard), stopping in the frozen treats department to scan for sugar-free ice cream.

Once I gave. Now I receive. All I have left to give you is gratitude, that and clear direction, a shopping list printed with my wavering pen in hand, and forgiveness for any lapses in concentration.

Pace yourself, dear Winter Caregiver. Whatever the results of tomorrow’s biopsy, I’m stuck with the durable truths of life: that sleet falls in every New England winter; that daybreak rises from the bed of night; that night will fold me in her arms, one night, forever; that we all sleep, sometime, folding our bodies into the good earth with one last act of generosity.

— Mary Ann Barton

Editor’s note: I wrote this prayer from the point of view of someone who receives care, so it’s not about me. I’m still able to run freely, for which I’m grateful. But I can imagine a time when the roles will be reversed. The piece was first published in the newsletter of First Parish in Concord, MA (Unitarian Universalist) . — MAB

Image credit:  The Snowy Winter of 1918, New York, by Childe Hassam, American, 1918, via Wikimedia Commons.