Issue #66, Dangerous Creations

Dangerous Creations

An Interview with Margaret Wardlaw

Hattie Fletcher

Dangerous Creations

Margaret Wardlaw is the winner of the $10,000 prize for best essay in the Dangerous Creations issue, made possible with generous support from the Frankenstein Bicentennial Project. Wardlaw’s essay, “Monsters,” tells the story of a night the author spent in a NICU, caring for an eleven-month-old patient she calls Luz. Born anencephalic—a condition “incompatible with extrauterine life,” Wardlaw notes—the baby has survived until now at the center of a miraculous tangle of wires and tubes. And yet, Wardlaw reflects, “[a]fter all that progress, we still refuse to treat her like a real baby. … She is no monster, so why should she spend her final hours alone, like a pathological specimen, walled off from comfort?”

Margaret Wardlaw (MD, PhD) is a pediatrician. Her writing has appeared in US Catholic, The American Journal of Bioethics, and Feminist Approaches to Bioethics. Her research and clinical interests include medical ethics, disability, and the care of children with medical complexity.

 


CNF: One of the wonderful things about this story is how much ground it covers—from Renaissance notions of monstrosity to the fate of a century-old embryology collection housed in a medical school to your experiences caring for a dying baby in a pediatric intermediate care unit. Had you mapped out all of the connections before you sat down to write, or were you surprised by where the story took you?

Wardlaw: The story took its own form as I wrote it, but at the same time I knew those connections were there.

I’ve been obsessed with monsters for many years. Really since my earliest experience with medical training.

I was studying petroleum engineering at the time and thinking about switching to pre-med so I asked a friend of mine if I could shadow his mother, who is a neonatologist. On that very first day in the hospital, I saw a surgery on a baby born with a very rare condition in which his abdominal wall and sternum hadn’t developed. (I think in retrospect it was pentalogy of Cantrell, but I wasn’t sure at the time.)

Across the hospital in the Neonatal Intensive Care Unit, nurses were gathered in a circle holding hands and praying while the hospital chaplain performed an emergency baptism. But the mood in the operating room was so different. I remember there was 1970s rock playing, the surgeons were talking about golf, and joking that they always told the parents the baby would likely die so that they would be happy with any outcome. The surgery was dramatic and the outcome was not the aesthetically pleasing work one might expect. “We try to leave as much tissue as possible,” the surgeon explained to the resident, “plastics can fix it up pretty when he’s two.” When the baby’s chest was sewn closed one of the surgeons put on a mock Eastern European accent and cried, “It’s a hideous creation, but it lives!”

On this, my first day in medical training, the surgeon made the connection to Frankenstein’s monster.

A few seconds later that baby’s heart stopped. Someone cut the music, and they reopened the chest and did CPR by tapping gently directly on the tiny heart. The baby survived the surgery. Later on I had a nightmare that night about the babies I saw that day, and I’ve been sort of haunted by them ever since.

I’ve always been fascinated with history and I studied the history of monstrosity extensively when I was in graduate school. Histories like that one, where there is a decidedly emotional and transhistorical element at play, often feel very timely and alive for me. When I studied monstrosity from a historical perspective the babies I had seen in training were typically at the front of my mind.

I think that’s part of why I found the embryology collection at my medical school, the one I write about in my essay, so disturbing.

CNF: In fact, during our editorial process here, some of those elements and parts of the different stories moved around a bit. Can you talk about the challenges of balancing all the different elements, and the flow and pacing of the piece?

Wardlaw: I tend to draw connections across time and discipline very easily in ways that seem obvious to me but can sometimes challenge readers and listeners. This essay has been several years in the making and has gone through many rounds of revision.

I remember when I first wrote it, I showed it to a pediatric palliative medicine doctor. I wasn’t actually looking for structural feedback at the time, more wanting to share with her my emotional experience of caring for a dying child, and hoping to connect with someone who had likely had similar experiences. I remember she told me she thought it had too much disparate content and was actually several essays. I felt disappointed, because I had hoped to make an emotional connection and wound up instead with editorial advice that I just didn’t agree with.

I felt very strongly that it was one piece, and I wanted to give the reader the sense that I had of how humans have always been obsessed with these babies. I wanted to show them the connection that I felt with people across history who have felt both compelled and unsettled. There is already a fair amount of academic work about this phenomenon, for example he postmodern philosopher Margrit Shildrick has called it “our transhistorical horror and fascination with the monstrous.” And I’ve written many essays about monstrosity with an academic audience in mind.

Aside from academics, the other folks who frequently write about these children are pro-life activists, who tend to have very interventionist attitudes, especially around artificial nutrition and hydration. I often feel that the rhetoric employed around babies in the service of politics is more about wielding power than respecting the individual children and their families.

I wanted to write about these babies in a way that acknowledged the academic and historical elements, but at the same time made a practical connection to medical practice.

And importantly I very much wanted to write in a way that also deeply honored the humanity of these babies. In my medical practice I specialized in caring for children with complex medical needs. I felt so strongly that these children had a great deal to teach us, and I wanted this story to reflect that.

CNF: Speaking of balance: you’re working as a doctor—full-time?—but you also have an impressive list of bylines. How do you balance writing with doctoring, logistically?

Wardlaw: Yes! I am currently full-time. And especially in residency I was often working those soul-crushing 80-hour weeks. When I was in residency I wrote mostly poetry. I would have an intense emotional experience on the wards and just type these half-formed things into my phone.

I was also really into Julia Cameron’s The Artist’s Way at the time, and I would just free write for ten minutes (or sometimes two) whenever I could. Lots of my “morning pages,” as she calls these 3 pages of free writing that are supposed to be done first thing in the morning, wound up on the yellow hospital note sheets we were using for the charts at the time.

I was also very lucky to have a sort of unintentional sabbatical when I first moved to Seattle, after getting married. I had some time between my wedding and the fellowship I had been accepted to, and my husband supported us both while I was able to focus on writing. I have very feminist sensibilities, and in some ways it was very uncomfortable not to be supporting myself. I think it’s important to tell these stories about how we finance our writing even if they feel uncomfortable.

CNF: Beyond the simple logistics of balancing, do you find that your writing informs or changes (or perhaps even interferes with) your practice as a physician? Does it make you a better doctor? Or are there ways in which it might also be a distraction—or, perhaps, a healthy distraction?

Wardlaw: I was always this weird trainee who was stepping into the hospital stairwell to read poetry. I had this torn up copy of Leaves of Grass that I ripped into sections so I could fit them in the pocket of my white coat. I remember one time I left it at noon conference and when I went back to retrieve it, one of the senior residents made fun of me. “We knew this had to be yours.” After that, folks would sometimes see me and say “Wardlaw! Deep thoughts; deep feelings.” I had that reputation.

But later in my training, it really turned into a boon. Once I had my own team, I would start my hospital rounds every day with a different poem that I would get one of the medical students to read. I printed them out on these little sheets of paper that I would find afterwards all over the hospital, taped above people’s desks, or in the call room. They really resonated with people! When I stopped being so self conscious I think I realized that I wasn’t the only person who was looking for some kind of affective or spiritual outlet during what was often really a difficult time.

CNF: You seem uneasy with the medical profession; at one spot in the story, you observe, “It wasn’t the first or last time I contemplated quitting medicine.” Do you still contemplate quitting? And if so, what keeps you from quitting?

Wardlaw: Oh gosh, all the time. I have a good friend, Rachel Pearson, who is also a physician writer, an MFA dropout, and a PhD in the medical humanities. She keeps me sane in a lot of ways, it is such a gift to have someone you don’t have to explain yourself to, because she has had so many of the same experiences.

We have this ongoing joke that we started when we were in medical school, where when one of us is frustrated with medicine, the other would offer to call the dean of our medical school and let her know we are dropping out. “Want me to call Dean such and such and let her know that you’re dropping out of medical school.” “Yeah, that would be great.” We keep it up today, years after graduating.

But what keeps me from quitting is that it is just this amazing gift to practice medicine. The way that people entrust you with these deeply personal and vulnerable moments in their lives. There is something so profound in that that in many times can become something sacred. I think I am always looking for that human connection in my life, and medicine offers it in a really beautiful and continuing way. And especially helping families at the end of life. For whatever reason I am good at having those conversations with families in a way that makes them feel seen and cared for. There is this ability to say something like, “I can see that you love your baby so much,” and just acknowledge their care and their struggle in a way that feels like a mutual blessing.  There’s nothing else like that.

I also take great solace in my physician friends. Some people think that there are loads of really uptight and myopic folks in medicine, and maybe there’s a truth to that. But there are also these people who bring both profundity and levity to the practice. Talking with them about medicine, particularly the philosophical, emotional, and spiritual elements of it, feels very sacred. And then there’s also this ability to see an intense humor and joy in it, even in the darkest places. I’m blessed with more of these physician friends than I deserve, and they absolutely sustain me.

There’s a spiritual element to this story, too. In the night you spend with the dying baby, “Luz,” at one point you seem to seek forgiveness, “[e]xcept there are no priests here to grant absolution, and this isn’t a confessional; it’s a hospital. And I’m not a parishioner; I’m a doctor.” What do you consider to be the role of religion and/or spirituality in medical practice?

I actually wrote my PhD dissertation on religion and spirituality in childbirth.  I think there are many ways in which physicians have taken on a priestly role in our culture. There have been loads of academics, probably foremost Michel Foucault, who have talked about this in a critical way in terms of the oppressive ways in which physicians wield power. But there is benevolence in this role as well, that often goes unnoticed.

There is a Benedictine monastery, Christ in the Desert, that I love to visit. It’s pretty remote, out in the high desert in New Mexico. I remember seeing the monks, and watching how they bowed to the altar every time they passed it, which might be dozens of time in a given day. They didn’t look as though they were moved by the holy spirit each time, but there was an intention in their movements that recognized that what they were doing was something sacred. I decided I wanted my medical practice to be imbued by that spirit. To live as if what I was doing every day was something important. Something sacred.

CNF: Writing by doctors has become almost a sub-genre of creative nonfiction in recent years, and many med schools have begun offering courses in Narrative Medicine. Was this part of your training, or an interest you pursued on your own? (You mentioned in your original cover letter that in addition to being an MD/PhD, you are an MFA dropout…)

Wardlaw: Yes, I was ever so briefly in an MFA program for poetry writing. It was really wonderful to have a space where people took poetry very seriously. Ultimately it just didn’t fit with my medical practice. There was also this part of me that just couldn't identify with the other folks there. We read Rilke’s letters to a young poet on the first day of seminar. It’s an incredible collection, and one I’ve loved for quite some time, but people were talking about this idea from Rilke that you should only be a writer if you feel that if you didn’t write, you would die. I’ve never felt that way, personally.

When I wrote it was because I felt compelled to do it, and I would say that poetry in particular was such a critical part of getting me through training, but I never had a strong identity as a writer until very recently. Honestly seeing my name in the intro to Creative Nonfiction, identified as a “physician writer,” was something new for me.

In terms of narrative medicine, I’ve seen Rita Charon, who directs the center for narrative medicine at Columbia, give talks at a few conferences. She’s amazing, and I’ve used many of the techniques she pioneered when teaching medical students. Literature and medicine was a big part of my PhD training, but the writing I did at that time was strictly academic. But this type of writing for a general audience is new for me in the past few years. I love it.

CNF: Are there other writers you consider big influences on your work, either stylistically or in their approach to writing?

Wardlaw: Walt Whitman, William Blake, and William Carlos Williams. Especially Williams’s essays. I also love the confessional poets, especially Anne Sexton. I am so moved by Sexton’s ability to make us look at things that are horribly vulnerable and discomfiting. But at the same time, ultimately I share Whitman’s abiding joy in humanity, even in the face of great suffering. And I share his optimism about people in general and more specifically the American project. I especially love his insistence on spiritualizing the physical, especially the human body.

I love reading poetry out loud, and when I can, memorizing it. My physician writer friend Rachel once said to me, “Margaret, the best thing about Walt Whitman is the sound of your voice.” I’m not sure if she meant it as an insult to Whitman, but I took it as one of my favorite complements. When I’m revising I often read my work out loud to friends or alone.

I’m quite obsessed by Emerson’s "Divinity School Address" and spent some time in graduate school making an illuminated manuscript of it. And since my Sufi aunt gave me a copy of The Essential Rumi in my teens, I have taken great joy and solace in Coleman Barks’s translations of the Sufi mystic, Rumi. I like the way his translations upset the academic apple cart while resonating so strongly with so many different kinds of people.

In terms of physician writers, I was very taken with Chris Adrian’s The Children’s Hospital, which treats religion and pediatrics. Though, generally, with the exception of poetry, I read mostly nonfiction. 

I love history of medicine especially. My writing isn’t anything like his, but Chris Feudtner is a pediatric palliative medicine physician who wrote a book called Bittersweet, which I loved. It’s about the history of diabetes. His ability to use medical records and single patient encounters to tell stories that transcend time is compelling. I’m also taken with his general vulnerability. He’s very willing to talk about how things like shame impact the lives of physicians, and I try to incorporate some of that into my own life.

I also love Heloise’s heartbreaking letters to Peter Abelard. 
 

Author Bio

Hattie Fletcher

Hattie Fletcher has been the managing editor of Creative Nonfiction since 2004. read more

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