I’ve been thinking a great deal lately about the medical profession, and more broadly, about health. I’m not certain why, particularly since I haven’t been ill lately, and we tend usually to think of health and healers only when our body is not well, when we are in pain, when health eludes us. So I have been a little surprised by this turn in my thoughts towards a subject not often contemplated in this circumstances. The immediate cause may have been this short mother-daughter exchange from StoryCorps, which I listened to earlier this week. There was something about the timbre of the mother’s voice, and the daughter’s, in this recording that pulled at me and that turned my thoughts towards the role of compassion in the medical profession, of the importance of emotional sensitivity in the work of healing.
Usually when I think of doctors, I think first of my maternal grandfather, JD Mortensen. He was a doctor, a cardiopulmonary surgeon who helped develop the IVOX machine, a heart-lung machine meant to replace the Iron Lung. As a child, I always knew vaguely that grandpa was an important doctor, that he was considered excellent in his field, and heard bragging about his having invented something really amazing that could save and improve lives. I remember watching him being interviewed on a national early morning news show as a young child, not understanding a word of what he was saying, and still being awed and proud. In writing this post, I decided I wanted to learn more about his work, and more about Iron Lungs and other artificial heart-lung machines, since I knew next to nothing. I discovered that there are serious concerns about something called postperfusion syndrome, more commonly known as “pumphead”. I learned about two remarkable women who spent roughly six decades of their lives inside of iron lungs.
One was an Australian, June Middleton, who loved dancing, caught polio in her early 20s and then spent 16 hours a day inside her iron lung. At the time, she was engaged. Her partner stayed with her for five years after her paralysis, eventually moving on to another life and having a family of his own. In an interview near the end of her life she tells her interviewer that still loves him, that he was a great dancer, and that “every day my feet itch to dance again.” She had a dog named Angel as her companion, entered the Guinness Book of World Records in 2006, and died in 2009.
The other was Martha Mason, a woman from Lattimore, North Carolina (pop. 419) who contracted polio at age 11 following her older brother’s death from the disease. Initially given about a year to live, she spent most the next 60 years in an Iron Lung. “She survived, she later said, because she was endlessly curious and there was so much to learn.” Ms. Mason “chose to remain in an iron lung, she often said, for the freedom it gave her. It let her breathe without tubes in her throat, incisions or hospital stays, as newer, smaller ventilators might require. It took no professional training to operate, letting her remain mistress of her own house, with just two aides assisting her.” In many ways she was a kind of social hub for the town, who took care of her:
“If Ms. Mason could not go to the town, then the town was quite prepared to come to her. The doctor visited regularly, of course, but so did all the neighbors and the neighbors’ neighbors. So did members of the local fire department, who came by during power failures to make sure her backup generator was working.
Ms. Mason often gave dinner parties — she ate lying down, with her guests around the table and the iron lung pushed up beside it — and savored lively conversation, good gossip and the occasional bawdy story. Amid the rhythmic whoosh … whoosh of the iron lung, the local book club met in her home.”
She was an intellectual in a small town, which must have often meant being lonely and longing for things she could not find or know, but which was made considerably easier in the mid-1990s when she obtained a voice-activated computer with internet access. In some ways her story reminds me of the story of Andrew Monkelban, a man with cerebral palsy featured in the recent documentary Second Skin, who describes how participation in virtual worlds through online gaming allows him to feel differently embodied, liberated, and more free. The film is streaming on Netflix Instant if you have a subscription, and his segment is at the 1:12:30 mark, I think. You can see a trailer here.
My grandfather was an early hero of mine, and his life has exerted an enormous influence over his descendents, which include 9 children, a step-child and upwards of 50 grandchildren. One of his sons became an obstetrician in Logan, Utah, where he has delivered thousands of Cache County babies. Another is an ophthalmologist in Salt Lake City. Other of his children have gone on to prominence and success in their chosen fields, and all of them were marked in several ways by their relationship to JD. Grandpa was the most driven man I’ve ever known, deeply dedicated to work, vigorous, resolute, and even obstinate in his pursuit of excellence in several disparate facets of his life. He sometimes felt gruff, emotionally distant, and even forbidding, but nearly everyone in his family still sought his approval for their life, their work, and their choices, and many measured their lives against his. To me, he filled the role of the mostly benevolent patriarch, and I loved, admired, and respected him. Near the end of his life he authored (with the help of a secretary and the transcription efforts of my mother, among others) a beautiful two-volume history of his life, and then having completed that project, turned to write similar histories for his mother, his first wife, Sarah Owens (who died of cancer in 1969), and his second wife, Eva Tanner, a native of Grouse Creek, Utah and the woman I knew as grandma throughout my life. These documents have been invaluable for me as a source of family history and as a means of humanizing individuals whom I knew only in part, or never met, but who were important members of my family’s past, and who form key parts of my own heritage.
Despite my grandfather’s influence (or perhaps because of it), I have never myself wanted to be a physician, or to work in the medical professions. I think my only natural qualification for the trade would be my abysmal handwriting. The closest I’ve ever come to the work is through volunteering at nursing homes, singing and visiting patients at hospitals, or helping with hospice care programs. I have never been able to offer any wisdom or insight about the body and its functioning, but I have been able to choose to be present for those who have been in extreme pain, who have been approaching death, and who have been subject to the frequent injustices of chronic illness, suffering, and even terminal disease. I think that one of the deepest lessons for me in these experiences has been that health is in itself an almost wholly veiled mystery, one that is too infrequently appreciated and poorly understood by a broader culture which seeks for dozens of distractions to escape the act of giving attention to the body, which is desperate not to listen to the body’s signals, rhythms, and irregularities. Too often we abuse ourselves, permit others to misuse or mistreat us, and sometimes even fall victim to unwanted and unjust woundings. When this happens we feel uncertain how to recover health, how to be made whole, or failing that, at least functional. And this is where I think that medicine and health systems often enter our lives.
Though I have no desire in becoming a health care professional, my youngest sister is training to become a nurse. She told me she felt called to the profession, and once admitted that she didn’t really love the work, but felt for some reason like it was what she was supposed to do with her life. The idea of being called to nurse other human lives touches me, as does the idea of responding to such a call. I want to write more about this idea in another post, so I’ll leave it for now. What I want to explore more deeply is the complexity and limits of nursing, of the more fundamental aspects of care-giving and care-receiving that make up the human and social networks of health in our own communities that we ought to be intimately concerned and involved with. When I was 19 years old, I left school (I had just completed my freshman year at Brigham Young University) to serve a two-year proselyting mission for the LDS church in the northeast part of England. I moved around every few months, and the longest time I spent in any one place was in Sheffield. I lived with three other missionaries in a small apartment near a large council estate in Fox Hill, on the top of Browning Street and we attended church with the Sheffield 2nd ward. I’m not sure what it was about the place, or that congregation, but I loved that area and that ward more deeply than anywhere else I lived on my mission. I think in part it was the relatively deep familiarity I gained with prolonged exposure, but I also think there were other things at play. One curious feature of that ward is that probably a dozen or more of the women who attended services there worked in the medical profession in some capacity. Many worked as what we would call nurses in the States, but there the were known (and referred to themselves) as “carers”. I looked up the word in a free online dictionary to check my memory, and it gives the definition as “a person who has accepted responsibility for looking after a vulnerable neighbour or relative.” Such a definition stuns me with its accuracy and its enormity. I think in hindsight that one reason I loved Sheffield so much was that I was in regular contact with a group of people who had disproportionately accepted responsibility for looking after the vulnerable. How can one not be transformed by such proximity?
When I was an undergraduate, in the first creative writing class I ever took, Shannon Castleton, my instructor, asked us to read Richard Selzer’s story “The Knife”. It conquered me, completely. I later read several other of his stories (my favorites are probably “Imelda” and “Mercy”) and admired his gifts of description, compassion, and his human concern for his own practice of medicine and the health of his patients. It was very different from the medicine practiced by the country doctor in William Carlos Williams’ “The Use of Force” and I saw an intelligent, feeling man seeking to wrestle with the complexities incumbent in the decision to accept responsibility for looking after those who are vulnerable, many of the same feelings I had when I watched Michael Moore’s moving interview with Aleida Guevara in his film Sicko [see part 1 & part 2]. A few years later I was reading through an anthology of poetry about work and found a few poems by a woman who had worked as a nurse named Belle Waring. Her writing pierced me, and I felt directly appellated, gripped, undone. A few of her poems are online, like “The Forgery” & “Saudade”, the heartbreaking “It Was My First Nursing Job” (at the bottom of the page, after the book review), and “Our Lady of the Laundromat”. Read her work. When I started as a co-curator of the FELIX reading series, she was the first poet that I wanted to invite, but I was never able to locate her. Writing this post has brought her back to mind, and I hope that I will be able to find her, convince my co-curators and her to come to Madison, meet her, and hear her poetry performed in person.
In addition to these storyteller-physicians and poet-nurses, I am compelled by the example of all manner of healers and carers who “draw out their souls to the hungry, and satisfy the afflicted” (Isaiah 58:10), who seek for ways to build up the old waste places, who yearn (and work) to be “repairers of the breach, restorers of paths to dwell in” (Isaiah 58:12). I loved reading the story of Driggs, Idaho native David Rakel, a tenured professor at UW-Madison’s medical school, who has done much to practice good wisdom around health and to incorporate holistic, integrated medicine into the community I live in. Practitioners of the kind of integrative medicine he teaches “are schooled in ways to hold on to their hearts and souls even as they master the intricacies of anatomy, physiology, biology, and psychology. They see their work as healing the whole patient, rather than being limited to specific body parts”. In a recent co-authored article Rakel wrote:
“If the health reformers are looking to get the biggest ‘bang for their buck’ both in the prevention and management of chronic disease,” they wrote, “they need look no further than delivering [integrative medicine’s] four pillars [of social, psychological, physical, and environmental health].”
The identification of these four pillars of health seem prescient and wise (they seem to me to echo the concerns articulated in Murray Bookchin’s theory of social ecology, as well as the appeals made by many environmental justice advocates, like Majora Carter, Van Jones (the man who served briefly as Obama’s Green Jobs champion) or the group Green for All, to name just a few examples). It also reminds me of Hans-Georg Gadamer’s remarkable book The Enigma of Health: the Art of Healing in a Scientific Age. But more than any literary or intellectual references, it reminds me of my conversations with my youngest sister, of the idea of an inescapable calling, of that band of a dozen-plus carers in that small Mormon ward in Sheffield England, and of the possibility that we might ourselves accept some kind of responsibility “for looking after the vulnerable” who surround us, whose health, surely, is bound up with our own.