Believe: The Healing Presence of a Compassionate Physician

Note on this: The process of getting to press in a magazine I revere, The Sun, is arduous, and my interview with my dear friend, Raymond Barfield, was more than a year in the making. Ultimately the introduction that I wrote led to lots of negotiations. So for those of you who might find the basis of our friendship of interest–and some insights on how Ray thinks about the world, and the role of music and language in his heart and practice, here is my unpublished introduction. I’d love for you to respond to it.

Ray Barfield and I first met in the resort town of Hammamet, Tunisia, where the World Health Organization had gathered people from around the world to talk about a new concept, “decent care,” and HIV/AIDS, and dying. It was January 2009, and Obama was about to be inaugurated. Whenever I walked through the souk in the resort, merchants would shout at me in different languages until I turned my head at the sound of English, and be cajoled in to some behind-the-counter drink of tea with mint and pine nuts and conversation about America. Other conference attendees would wave at me quizzically as they rushed to the next session.

I don’t remember talking with Ray during the five or six days of meetings. At meals, I wanted to sit with people who were from places I would likely never see: Egypt, Iran, Lebanon, Uganda. Ray, an attractive curly-haired pediatric oncologist from Duke University, did not strike me as exotic. He was just another middle-aged American man, and I’d seen enough of those.

hammamet arch

During our daily meetings of endless discussions, Ray seemed brilliant in what he had to say about the dying of children, and the new mix he hoped to build at Duke, where he had just joined as a professor of medicine and divinity. He was great when it came to arguing about words, like subsidiarity, which most English-speakers did not know, and the others—from the Middle East, India, Africa, Europe–could not translate. It turned out that Ray is a philosopher, too with a Ph.D. earned after he completed medical school.

On the long trip home, I had a several-hour layover in the Charles deGaulle Airport. I was flying business-class, and the lounge was comfortable and bright. I spotted Ray, hunched over and writing something in long hand, and took a seat across from him.

He told me that he was working on his novel, which a major publisher had expressed interest in. I remember thinking I’d really had enough of doctors who, it seemed, were so brilliant that just being able to heal the sick was not enough for them. I was tired, and, honestly, just jealous. For the next few years, we kept up via Facebook.

But in early 2013, I developed what has proven to be an intractable neuropathic condition, one that was accompanied by a year of such stress and loss and sorrow, I thought that I would die. I didn’t know any pain experts, had trouble finding one who would see me—and then remembered that Ray, as a pediatric palliative care physician, would know about pain. I emailed him for help, and he responded with a copy of the very latest research, which detailed the benefits of combining opioids and anti-siezure medications. Back and forth we went by email, as I tried desperately to find kind of relief.

From those early emails, an enduring friendship has evolved. It turned out that, like me, Ray wrote poetry, too, and had a book out called, Life in the Blind Spot. We traded books, although styles were different, out love of language was not. Indeed, our intentions were always the same: to make something beautiful and enduring that matters.

When medication after medication did not help, Ray suggested that my best path to healing would be to spend more time looking for beauty, or to make it when I could not see it.

He told me about his approach to his own life, one that includes all the usual issues of being a husband and father and citizen—and the complex issues of caring for very sick and fragile children, of whom 100 will die each year. (The math on that number is bleak: that is two children each week, no matter what Ray and his brilliant colleagues offer.)

Ray said that he imagines his own life to have come with a bag full of golden coins., which he cannot see or count. Each day, he pulls out one coin, and considers how to spend it. Once it is spent, he says, it can never be reclaimed. And so, he urged me, spend that coin on something valuable.

Ray is at once miserly and generous with those coins. Most of his are spent in a hospital unit, managing bone marrow transplants, or pain in children with sickle cell disease, or playing his beloved guitar for a child in the ICU, or listening to desperate and grief-stricken parents.

Other days, rare ones, the coins go to his guitar playing or his writing. His first novel, The Book of Colors, came out in 2015. Written in the voice of a 19-year old biracial pregnant young woman whose mother has died in a crack house, Ray tells the story of Yslea as she makes her way to beauty.

When he is challenged at the seeming hubris of this—a middle-aged white professor from Duke talking in the voice of a young black woman—he bristles.

“Is there not room for imagination?” he asks. “Can I only tell stories through my own experience? Tell that to Faulkner.” Novelists must take the voices that come to them, Ray says.

I have spent some time at his home in Carrboro, where he is up at five each morning to build a fire near the desk where he will write for a few hours in longhand on plain sheet moleskin notebooks. Once his day begins at Duke, there will no time to write or dream.

The living room has no spare wall space—shelves of books collected over the course of a long marriage fill every wall from ceiling to floor. A stone fireplace is the room’s central focus, and the set-up reminds me of a church or an altar. The room is a peaceful place to be, and I am lucky to count myself welcome there (so long as I stay quiet while Ray lets the muse loose).

Our Sun interview began last October, on a crazy-fast car ride through the streets of Carrboro, where a fall festival was underway. Ray was racing to the home of luthier Wes Lambe to drop off his three guitars, which needed work if they were to sound the way Ray wanted them to.

As the two spoke, I had a glimpse of the artisan within the physician. Ray is deeply attached to his guitars, which, he says, have played a key role in almost every important moment of his life. Most recently, he has taught himself to play like the Australian guitar master, Tommy Emmanuel, a vibrant, layered, percussive sound which Emmanuel calls, “a harmonic cascade.

“Don’t fuck up,” Ray tells Wes as he snaps the last guitar case shut. Leaving those guitars, I sense, is a painful act of faith. If a tool slips, the luthier can easily compromise or destroy an instrument.

It is what the parents who leave their children in Ray’s care must do, too. And so too, the children who are old enough (that is, not infants) to understand what is happening to them. Patients give Ray their bodies, that they might be healed. One wrong move, and they are gone. So Ray works carefully with them, often at the very edges of what might heal.

People often think of doctors as mechanics, or compare health care to an autobody shop. It is far from that. The care of the sick and the dying is an act of the spirit, a glimpse of the holy. Ray knows that he is an artist—and he knows that healing is not always equivalent to curing.

For two days last fall, Ray and I hung out and talked. He can be funny—and he can be cruel. He can be full of beauty, and sometimes, every so often, a bit of grace, too.

This summer, we got together on a mission involving one of Ray’s guitars. He wanted Nils Lofgren, a rock-and-roll hall of fame musician, to sign the guitar. Arlo Guthrie had, Ray said, so why not Nils? Because Nils follows me on Twitter, Ray and I figured there was a chance.

After Lofgren’s show in Annapolis last spring, Ray and I stood in a long line, he with his guitar, and everyone else with their CDs and albums and t-shirts. Nils looked puzzled when Ray set his guitar on the table, but he smiled. I told him that this moment would bring Ray such joy.

IMG_8028

Nils wrote, “Believe,”* and so Ray does, or tries, even when life makes that hard. Ray believes in heaven, but more often than not, it is of this earth.

 

key words: life of a pediatric oncologist, chasing spirituality, finding meaning, care for dying children, Duke School of Divinity, Duke School of Medicine, Dr. Raymond Barfield

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Got Springsteen Tickets for DC? What did that cost you?

Since I first heard him sing at the Capital Centre in Landover, MD, I’ve been addicted to the music–and shows–of Bruce Springsteen and his E Street Band. I don’t think I’ve missed a show in the DC area since first seeing him on the Darkness tour in 1978 at the Capital Centre in Landover, and a few years later, for the original River tour, 1980, Cap Centre, while I was home from college. I’ve seen him at FedEx field, and the MCI Center, now Verizon, and at RFK for Born in the USA. I made it to Vote For Change shows, and the show at Nats Stadium. The last time I saw him, my father, sister and I drove to Raleigh, NC, to catch him at an arena near Durham.

It also happens that I have been writing about him in The Washington Post since 1992, when my first letter to the editor appeared in that paper.

Fuddy-duddyhood? At 30?!

Fuddy-duddyhood? At 30?!

That same year–in fact, just a few months later, I wrote another letter, this one bemoaning some writer’s statement and the genius of Bob Dylan would far outlast that of Bruce Springsteen. I begged to differ (and, in the process, really irritated my 23-year old brother, but hey, he didn’t know!).

Bruce in the History Books

Bruce in the History Books

I have written a few times about how hard it has become for an ordinary person with an ordinary computer to buy tickets. Once, it was about the 2007 Magic tour, and the Post ran my letter, bemoaning the seats members of Congress gobbled up and sold as fundraisers.

Seventh-Street Freeze-Out, But Congress Partied On

Seventh-Street Freeze-Out, But Congress Partied On

And the last time I couldn’t buy tickets (The 2010 Wrecking Ball tour) I wrote about it for the Post’s Local Opinions, suggesting that the bots and StubHubs of the world had taken over the joy of live rock shows. Oddly enough, this story became the basis for an article about an act–the BOSS Act–that was under consideration as a way to stop the bots. In 2012, something similar happened, and I appeared as a guest on the radio program, Culture Shocks with Barry Lynn to talk about the issue of being able to get concert tickets, and how the bots keep winning.

I try to think of why I love the man and the music so much, and can guess at many elements–my own 1970s adolescence and the recession, where we all seemed stuck forever in a moment of time. The voice and the music, full of muted sexuality and longing and love. I wrote about that show for a blog called The Light in Darkness. Even now, 46 years later (how did that happen?), I am transformed when I watch Bruce Springsteen and the E Street Band perform.

Great seats for 2014 show in Raleigh, NC

Great seats for 2014 show in Raleigh, NC

The truth is that a Springsteen show is about as close as I get to church anymore, standing in a packed arena, fists pumping and singing along with Bruce and the crowd. I am often there with my sister and my father, and I am always happy when the 73-year old jumps to his feet and belts  out “Born to Run” with the rest of us, house lights up, as if he, too, were 18 again. In fact, at 73, he is a cancer survivor, and I always hope to get in one more show with my Dad and my sister. Nothing can compare to that joy.

Dad knows every word

Anyone up for a trade? I can’t afford the $600 the scalpers are after, but I’ll pay face value, or trade you–I can draw a little work of art, featuring whatever it is YOU love most about Bruce Springsteen.

The time Springsteen goes on tour, how about skipping Ticketmaster altogether? I, for one, would be quite happy to camp out in the Verizon parking garage and wait for tickets to go on sale in person for my city’s shows. That, at least, would seem fair–not only to fans, but to the artists, who are also ripped-off by scalpers.

At 53, I’m quite adept at dancing in the dark, but man, living in the future ain’t what it used to be.

Key words: buying tickets for Springsteen, how to beat Stub Hub, camping out for tickets, child of the 1970s recession

 

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How to Cope with the Cycle, Not Stages, of Grief

I was invited to write about grief for a popular website, so I have been thinking about it, and what I might write. So many have written and sung and drawn their experiences of grief and loss. What could I add to that canon?

I found myself thinking of something my friend Reuben mentioned so many years ago after his dad died–that the sight of a dapper older man walking down the street with a hat tipped a certain way could start his  grief all over again.

For me today, it is this blizzard. In February 1994, I was a single mom of three under the age of 5. My granny, who had bought the house next door to mine so that she could stay near to help with Conor, my first baby, had fallen and broken a hip.

That summer, my uncle had built a back step to the deck off my kitchen–low rise, long run– so that she could come straight across the yard and in the backdoor, bypassing the steep stairs out front.

When she came home to recuperate from the broken hip, my job was to get over in the morning, to check on her and get her set up for the day.  Alyson, my youngest daughter, was a month old, so I would strap her in a Snugglie under my maternity coat, and bundle up Conor and Meredith, ages 4 and 2, in snow clothes.

Someone would inevitably need to go potty the minute I had them all dressed. But eventually, we would tromp across the ice and snow to my Grandmother’s house. I would pray not to fall with the baby strapped on.

The deep snow today reminds me of that winter, and a year in which I lost my marriage and my grandmother. I was  thinking about how much I still miss her, and also how I did not know to appreciate her more. I expected her to live forever, even though I was old enough to know better.

When Conor was a newborn, I would get  irritated with my two grandmothers–who only ever loved and helped me–because they had so much advice for me about what to do with that colicky baby.

They wanted to hold him all the time, take him from me and urge me to rest, or shower, or work on a freelance job. My Grandmom Hourihan (Graom) would arrive every weekday morning around 8 to take him to the living room so that I could get some sleep. My Grandmom Lynch (Meme) would come every Tuesday and sit in a chair with me and sing The Tennessee Waltz.

Before our move to the exurbs, my mother, Mary, and my great aunt, Anna, who both worked nearby, would come by for a cup of coffee and a sandwich. I was lucky to be surrounded by their decades of experience, but too foolish to know it.

Now that I am a grandmother, too, I know it. I understand what my grannies were about, beyond helping me with adjust to motherhood.

Holding a baby is a brief touch on the future; the old know that our time for holding babies is limited, and that we will become invisible before we become nothing. I know that my times of holding babies is long gone, save the few times a week that my grandbaby allows me to carry her.

An artist friend died earlier this month–alone and unexpectedly at the age of 73. Luckily he was a writer, so I am able to hear his voice through his blog, Waterfall Road. A friend of his posted this from TJ’s blog, 2014:

I don’t believe this is the path of my enlightenment in one lifetime. I see it a cycle through this lifetime in self-awareness, saying in signs I’ve done well not to get side-tracked, passing through opportunities for distraction, indulging some and letting them go, returning to the flow, allowing the flow, trusting the flow that just keeps rolling along. 

More than ever, I feel myself in that flow, as TJ said. It will just keep flowing along, always forward, never back. How I wish I could flow back to 1994–not the bad times–so my grannies could once again give me their accumulated love and wisdom and heart. I would make a pot of coffee with plenty of cream, and we would admire my beautiful babies.

“Doll,” my Grandmom Hourihan would say, as I fretted over some milestone or misbehavior or worry, “Slow down. It’s over before you know it.”

Or as Iman posted  on Instagram about  David Bowie  dying, “sometimes you will never know the true value of a moment until it becomes a memory.”

 

Keywords: grieving process, grieving loss of relationship, grieving for celebrities, grieving process for friends

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Bowie Tribute on The Health Care Blog

Thanks to the editors at www.thcb.org for featuring my tribute to David Bowie and one of my favorite songs, Ground Control to Major Tom.  I’ve contributed to THCB in the past, but always about health policy. I’m glad to have found a kindred spirit there, who can appreciate that we do, in fact, mourn our icons and celebrities and public figures, who come to represent and even become a part of a time and space in our own lives.

I have since colored the image and hope others will find it mysterious, joyful, with a bit of longing for a time when life seemed that it truly might last forever.

Bowie in the stars

And just in case you’d like a clean copy of your own to color, feel free to try this version–but be sure to share what you come up with!

The stars look very different today

The stars look very different today

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The Stars Look Very Different Today

It is so hard to keep on loving this life, when you see how quickly it is gone.
What choice do we have?
My drawing tribute to David Bowie. You might even be able to color it.

 

The stars look very different today

The stars look very different today

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Waterfall Road: How I Missed It

For a few years now, I have enjoyed the friendship and encouragement of an artist/writer/dreamer, TJ Worthington, who lived on Waterfall Road in a place called Sparta. We met through Your Daily Creative Practice, a Facebook group founded and managed by visionary artist, Ruth Schowalter of Georgia. I enjoyed TJ’s blog, Waterfall Road, and his observations about life in the mountains of North Carolina, and the people and creatures he encountered there.

In my mind, one day, I was going to Carolina to meet him. But on January 4, 2016, TJ died unexpectedly, at home at least, and not in some ICU or ambulance. This poem is a dream of how our meeting might have gone. Perhaps one day, in the stars, it still will.

I often enjoyed his blogs, but his last one, posted Jan. 4, 2016, struck at my heart so.

So does one on the topic of regret, something I am trying to release from my own heart.

Though he lived in the rural mountains, his heart lived in the world. Here is one of his last works of art, called “34” which he posted with lines from the Tao-te-ching:

 

34

I will be there in Sparta on Jan. 23, to read a poem for TJ and to meet his many friends and hear their stories. And who knows, maybe we’ll dance, or play a tune, or sit in the quiet of the woods, and listen.

 

TJ Worthingon, death, memorial, art

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How Becoming an Artist at 53 Helped Me to Grieve–and Find Joy

All my life, no matter where I was or what I was doing (including earning an undergraduate degree in mathematics), I thought of myself as a writer, mostly a poet, but one who would venture into other literary arts, from personal essays to short fiction. I played guitar, but did not consider myself to be a musician. And I knitted, but would hardly cLiam to be a fiber artist. In my personal and professional lives, I wrote: happy, sad, busy, engaged, exhausted or exhilarated, from the moment I could first spell my name, I wrote.

But when my 94-year old grandmother died last winter, I had no language but tears. The fact of her very long life, and its profound connection to mine, did not mitigate my grief. When I went to write about it, my usual way to cope with emotions, good and sad, I could not.

Instead, inspired by something I had observed among the visual artists in a creativity group I belong to on Facebook, I thought  I might try to draw. The artists had introduced me to something called Zentangles, so I went to Michael’s craft shop to buy pens and paper. While there I was drawn—of course—to the pens, which included a gorgeous collection of watercolor pens. I bought two packs.
Milestones

I have since published a book, a tribute to the women who made me, entitled  What Are Mothers For? On sale now via Amazon at http://www.amazon.com/dp/0692562370, it is a cheerful gift for any mother, or anyone who has ever mothered you.

Proceeds up to $500 will be donated to Reading Partners Baltimore
Learn more about this effective program and how it changes the lives of children and volunteers. The volunteers participate in schools throughout the city, working one-on-one with children ages 5-to-8 who struggle to read.

This post originally appeared on Architects of Change by Maria Shriver. For the complete story, click here.

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I Came to Live in Color

I have spent so much of my life seeking to connect and be connected with others, that it rarely seemed worth the effort to connect to myself. I had so much invested in other relationships. And adulthood, with its usual joys, challenges, demands, losses and more, left little time to do much more than keep the trains running (or the house standing) as my husband and I raised our six children.

From "What Are Mothers For?"

From “What Are Mothers For?”

My longing to be connected is rooted in the oh-so-human need to love and be loved. For some of us, it takes a lifetime to understand that this means loving ourselves, too. And for most of my life, such connection has come through the roles I have played, first as a daughter and sister, and later as a lover, wife, mother, and grandmother. But most of all, as a writer.

From the moment I wrote my first sentence, I decided I was a writer. I have written ever since, moving from childhood limericks and lovelorn adolescence to a master’s degree in creative writing, and a career as a writer of essays, articles, and more. I have shelves full of journals that date from 1974, when I was 12.

– See more at: http://www.disruptivewomen.net/2015/12/03/i-came-to-live-in-color-reaching-the-age-of-audacity/#sthash.1kWx8D7W.dpuf

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What Are Mothers For?: Ready to purchase on Amazon!

If you have ever loved a child, been a beloved child, or remembered happy moments shared with adults you loved, What Are Mothers For? will speak to your heart. With whimsical drawings accompanied by simple text, the book shows and tells the story of my memories of my childhood–some inspired by my grandmothers, my mother, and my sisters. The book follows the life cycle, from when we first come from the stars, to when we have children of our own.

Thanks to the expert design and layout support of Min Enghauser of The Torpedo Factor, the book LOOKS fantastic–and I hope you love reading it as much as I loved writing and drawing it. Here is a short link:

www.amazon.com/dp/0692562370

And an early image: We arrive on a wing and a prayer:

on a wing and a prayer, 1

We have so much to learn and absorb, to do and become.

interior book spread

In the end, we create our own beauty, and the beautiful lives that follow us.

It would make a beautiful gift for the holidays, a new mom, a mom-to-be, a grandmother. Many women are mothers by virtue of birth and adoption, and many more by virtue of the love they give to children.  Please consider a copy, the first in a series about all kinds of people (and  maybe a few animals, too).

tags: mothers, motherhood, parenting, children, love, aging, giftbook, picturebook, Janice Lynch Schuster, What Are Mothers For?, growing up, learning,

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A few for the holidays

In production soon! Or commission your own favorites.

And Let it Begin With Me

Let There Be Peace

Giraffe Joy!

Giraffe Joy!

A Midnight Clear

A Midnight Clear

Singing with the Birds

Orchestra Tunes Up

 

 

 

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