A History of the Present Illness (27 page)

That was the worst: when you didn't know whether you'd killed them, when you wondered whether, if a certain hand had been played a slightly different way, maybe the whole thing would have gone in another direction and there would still be dominoes standing in their usual neat lines at the end of the long hall on the fifth floor of the Martin Luther King apartments. Maybe Rogelio would still be in the game, making sure his wife lived and died in her home with the best of care to the very end, her hair neatly brushed, and every inch of her skin clean and rich with the scents of baby powder and cooking oil and love. But there was no way to know, so you stayed awake nights wondering, and then sometimes, for the next several patients, you ordered every test imaginable, careful to miss nothing. You tortured them and found that some got better and some didn't, and you were no closer to a definitive answer about what constituted good care and enough treatment and what was too much.

This next medical story, though an official chapter in the history of medicine in America, is considered sacred by some and blasphemy by others. It all depends on people's biases when it comes to plotlines in medicine: Are the only legitimate scenarios the archetypal classics Man v. Disease, Man v. Man, and Man v. Death, or might tales that lack metaphors for battles and quests—scenarios such as Man with Man, Man accepts Fate, or Man with God—have a place in the canon as well?

Way back in the mid-1990s, when mostly no one besides doctors on call carried cell phones and Internet skills weren't essential for keeping up to date with the latest scientific developments, a new species of medical conference emerged and spread across the country like an epidemic. From the enthusiasm of certain doctors and nurses, one might have thought
there'd been a major medical breakthrough. The conferences had sessions with such titles as “Giving Bad News,” “The Good Death,” and “The Spiritual Lives of Patients.” During the breaks between lectures, multicultural pain scales with selections ranging from smiley faces to frowns and plastic pocket cards listing useful phrases to use when breaking bad news were snatched from display tables as quickly as free wine or cookies.

It was the birth of medical modernism, when a subset of doctors finally acknowledged that not all patients could be cured, and then they went one step further, admitting that in fact not just some or many, but all patients—and also, eventually, their doctors and nurses and everyone else would die. The movement's leaders declared that if patients were to find meaning at the ends of their lives, medicine could no longer countenance the traditional and up to that point supremely dominant narrative in which cure alone constituted therapeutic success. Moreover, they argued that there should be no singular approach to patient care at the end of life. Each person should be viewed as his or her own text—complex, contradictory, playful, ironic, ambiguous, and absurd—and not all stories would have the benefit of happy and tidy endings.

By the time I came along nearly a decade later, death had become a fashionable specialty in medicine. But it wasn't until my locums year that I had what could be called my Chekhovian realization or Joycean epiphany: I wanted to be right there when people died—in the trenches, as we doctors like to say, as if battling disease and death in others is a first person experience.

Good medical stories capitalize on the myriad opportunities for imagery, analogy, and metaphor offered on a daily basis in
medical encounters and settings. In the spring of my year doing locums, I was sent to a large nursing home on the southern edge of town where I watched two chatting young women in baby-blue scrubs wheel a body draped in a single white sheet from one building down a long glass corridor to another, then wait in the main lobby among the potted plants and Easter decorations and a crowd of visitors and residents for an elevator down to the morgue. Walking by, I thought of those old brokerage commercials in which mention of the famous broker's name caused immediate silence: all movement and conversation stopped.

I had seen enough by then to know where people went after death. Nowhere. They remained in bed, wearing death like a face-lift, an orgasm, a new persona, the change obvious from the doorway. The afternoon of Rogelio's death, for example, the aide and I watched as the paramedics rolled him down the darkened hallway in a black rubber sleeve, like a giant garment bag for his ultimate journey.

Sometimes, when it was over, when the coroner and the funeral home had been notified, you didn't know what to do. The more you wanted to leave, the longer you stayed. In those moments, setting became all important: a shiny black rotary phone that wasn't ringing, though you'd left a message for the daughter; the acrid smell of urine from a diaper in need of changing; the faded green recliner you didn't sit in, because you'd never seen anyone sit there but Rogelio; the painting of the Cerro Negro volcano erupting over the city of León, painted by Carina from a photograph long after they'd moved away.

One warm Sunday evening in mid-May, as the grass on the city's unmanicured hilltop parks faded from green to the
golden brown hues that signal summer in San Francisco and shortly after my new husband and I had driven ourselves up to Reno and tied the knot, I scrolled down the document I'd been working on for the better part of that year. It consisted of a series of anecdotes, each describing a patient I'd seen or a “story” I'd heard from another doctor. Each anecdote had a beginning, middle, and end but felt incomplete on its own. They shared themes and locations in San Francisco and occasionally a character who appeared in more than one anecdote. I knew they belonged together but hadn't figured out how.

Looking up from his Sunday
Times
, our obese feline fluff ball comfortably ensconced in his lap, my husband asked, “Have you considered that progress is slow less because of what you're trying to say and more because how you're saying it needs to be completely different?”

“Meaning I need to choose between personal essay and fiction?”

“No. Meaning none of that matters. Meaning you keep trying to seduce your reader with setting and synonyms, humor and allusion and allegory, and maybe all you need to do is just be straight up about how much your patients mean to you and how difficult these situations are and how lost you feel when you don't know what to do. Meaning forget the fancy footwork and ironic remove, and just tell the damn story!”

At the county hospital where the neighborhood health center admitted its patients, the residents called admissions
hits
, unless they called them
hurts
. Hits were just work, while hurts were admissions made especially painful by either the amount of work required or the certain knowledge that one's efforts were ultimately useless. Carina was a hurt. Obese and demented, she kept getting sick. At each admission, she seemed
weaker and more disturbed by the hospital sounds and smells and people, the IVs and breathing treatments and everything else. I offered to try managing the crises at home and explained about alternatives to 911, up to and including hospice. But Carina's daughter, who had moved her entire family across the country and into the Martin Luther King apartments in the week after her father's death, insisted on hospitalization. “But I thought—” I began, recalling that she had seemed disappointed when I'd cured her mother's pneumonia a few months earlier, and then I let it go.

Carina's daughter had become her official caretaker, work that came with a small but reliable paycheck from the state. Between hospitalizations, she hand-fed her mother small bites and spoonfuls of her favorite foods. From what I could tell, Carina's diet consisted of tortillas and bananas and ice cream, only some of which made it to her stomach. The rest went down her trachea, and a few days or weeks after her most recent admission, I'd receive a call saying she was back in the hospital. With each hospitalization, the residents would talk to the daughter about Carina's obvious suffering and apparent distress, but the daughter said that Carina was happy at home, and it was true that on my visits she sat smiling in her wheelchair between bites of strawberry ice cream or lay in her bed smiling, her grandchildren lying beside her doing their homework and watching TV. But it was also true that Carina's ongoing existence and care needs secured for her family a low-rent apartment and a regular paycheck. When my locums year ended, this was Carina's life:
tortilla hospital home tortilla hospital home tortilla hospital
.

As is the case for all medical stories, with the exception of things I've altered in obeisance of the Health Insurance Patient
Protection Act and, at my husband's insistence, for reasons of esthetics and art, everything I've written here is true. For their sakes, I had to change patients' names and biographical details. For my sake, I had to downplay some aspects of my professional and personal lives. The heartbreak and incredible sex, for example, but also the joy. In real life, there was more of it. In real life, if you're as lucky as I have been—with work that is long on characters, drama, and significance—there's always more joy. But that doesn't make for much of a story.

In medicine, the “history of the present illness,” or HPI, is the critical first portion of the medical note that describes the onset, duration, character, context, and severity of the illness. Basically, it's the story, and without it, you can't understand what's going on with your patient. Similarly, to really understand this book, you need to know that its onset occurred decades ago, that the symptoms have waxed and waned over time but have been increasingly prominent in recent years, that it's been a wonderfully messy business full of emotional highs and lows and legions of supportive, generous characters, and that I am hugely grateful to each and every one of them.

In retrospect, the symptoms started shortly after my birth at one of the hospitals described in this book. The context was the parents to whom I was born: I am a writer because my mother talked to me from before I could answer her, taught me the rules and beauty of language, and provided me with endless recommendations of good books; and I am a doctor because my father modeled the excitement of science, the importance of evidence and logic, and the thrill of making a difference in the world. My parents have supported my every venture and interest, and a person doesn't get much luckier than that.

Within weeks of completing my medical training, I began taking writing classes from talented and dedicated writer-teachers. I thank Shelly Singer, Paul Cohen, Tom Jenks, and Carol Edgarian for their wise instruction and forbearance in the face of my early efforts, and Judith Grossman, Peter
Turchi, Debra Spark, David Shields, Adria Bernardi, and the rest of the faculty at the Warren Wilson Program for Writers for teaching me all I needed to know to continue developing as a writer long after I'd earned my M.F.A.

For some people in medicine, fiction writing is a foreign and questionable activity. I have been fortunate to work for people whose open minds and flexibility allowed me to take on a second career not only without compromising my medical career but in a way that enriched both. Jay Luxenberg was the first to invest in me, and I will be forever grateful for his unwavering support even as months bled into years and there was no outward sign that I was actually doing what I claimed to be doing. Like the best of bosses, Seth Landefeld let me follow my unique and unconventional trajectory, offering sage advice and financial support at key moments when many others would have offered neither. Molly Cooke, David Irby, Nancy Ascher, Paul Volberding, Brian Dolan, David Elkin, Patricia O'Sullivan, Talmadge King, and many others at UCSF expressed interest and confidence in my efforts and helped me blend my passions for medicine and writing into UCSF Medical Humanities and a better book.

My job is sufficiently demanding that stretches of months often passed during which I did no writing. What saved me, and the book, during those years were opportunities to go to beautiful places where I was provided with the space, time, fellow artists, and good food required to make otherwise impossible leaps of progress. I thank Ucross, Ragdale, and Hedgebrook for giving me just what I needed to move forward.

Critical to the development of these stories has been the feedback and community I have had from my writing groups: Lindsey Crittenden, Rachel Howard, Ken Samuels, Adrienne Bee, and Frances Stroh in the early years, and more recently
the Grotto group extraordinaire: Natalie Baszile, Bora Reed, Suzanne Wilsey, Katherine Ma, Susi Jensen, and Catherine Alden. Thank you all for putting up with this long, slow process and for having the courage to give honest, constructive feedback.

The fact that this book is appearing in print at all is a testament to the generosity of three writers who responded quickly and enthusiastically to an acquaintance who had the audacity to ask if they'd send the manuscript to their agents. Thank you to Peter Orner, Chris Adrian, and Bill Hayes.

So much of success is luck, and my next lucky break came in the form of Emma Patterson, a young agent who started reading my manuscript and told her boss, Wendy Weil, to read the book immediately. I knew from the start that I was in good hands with Wendy and Emma at the Wendy Weil Agency, and it became even clearer when they led me to my editor, Nancy Miller, at Bloomsbury. Nancy's keen eye and gentle questions have done much to improve the book, and it has been a total pleasure working with a team that understood what I was trying to do and believed that others might enjoy it too.

I am particularly grateful to the friends who read, reread, and re-reread these stories. Each offered insights I lacked and needed, and their faith in me and the work kept me going and inspired me to further improve the book. I cannot thank them enough: Kathleen Lee, Annette Huddle, Gina Solomon, and Shawn Behlen.

Finally, there is one person without whom this book would not exist. Jane Langridge makes anything possible and everything better. This book is for her.