Tag: Nils Lofgren

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insights on how Ray thinks about the world, and the role of music and language in his heart and practice, here is my unpublished introduction.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.

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.

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