Negotiating time in the clinic

by Julia Tompkins

Illustration by Lillian Xie

published February 17, 2017


In February 2015, seven months before his death, the late neurologist and author Oliver Sacks published an essay in the New York Times on his recent diagnosis of terminal cancer. He wrote: “I feel a sudden clear focus and perspective. There is no time for anything inessential.” Medical narratives like Sacks’ are typically thick with mentions of time: days spent in a hospital bed, minutes spent with a doctor, hours in surgery. Life threatening illness forces the patient to reckon with their sense of time, whether or not they can control it, and what they should do with it.  

Quantifying time becomes an exercise of willpower. Time does not belong to the patient. In Michael Downing’s Life with Sudden Death: A Tale of Moral Hazard and Medical Misadventure, and Bruce Feiler’s The Council of Dads—both memoirs—measuring time becomes a way of thinking about the self. For individuals like Feiler and Downing, time could only be extended through doctors and tests, charts, endless mounds of paperwork. The hope was a cure, in the form of a clear scan, a steadily beating heart, another year. 


Losing Time

How do you measure time when your future might be sudden death? 

On the phone, Michael Downing laughs often. He speaks to me from Cambridge, Massachusetts, where he’s at his home working on his next book. As a professor at Tufts, his days now are filled with research, new chapters, and classes, but the prospect of his sudden death is still there—it rests in his genes. Downing’s father was 44 when he collapsed in the bathroom from a massive heart attack. Downing’s brother Gerard was 53 when he collapsed while shoveling the driveway. The potential for death lurks around the family, consistently veiled as anomaly. The potential for sudden death is Downing’s reality, something to be managed, avoided. In a piece Downing wrote for The Story Within, a collection of essays on genetic diseases, he writes of his brother’s death as the “fulfillment of a tragic legacy.” He, too, is a part of that legacy, along with his remaining seven siblings. When Downing’s nephew Nate, Gerard’s son, was also diagnosed with hypertrophic cardiomyopathy (HCM), the greatest symptom of which is sudden death, the family anomaly started to look more like an heirloom. 

In the spring of 2004, Downing sent his DNA to a lab at Harvard, prompted by his nephew’s diagnosis. He describes his decision to get tested through metaphor: “if your father had died in an exploding car, and your brother had died in an exploding car, you might slow down, pull off the road, and have someone check under the hood.” A nurse from the lab at Harvard called. Downing tested positive for the genetic mutation responsible for the deaths of both his father and brother. 

After the discovery of the mutated gene, Downing’s life was linked to the hospital. The medical system possessed the tools to delay his imminent death. That threat created an urgency which made him vulnerable and willing to cede his authority to the hospital. When we speak, he makes sure to differentiate between hospital time and real time: “the exacting sense of time was a big change. [There is] a loss of a kind of adultness.” The hospital keeps a stringent hold over time.

In early June 2008, 44 year old Bruce Feiler, a non-fiction author and memoirist, went in for a routine checkup. His doctor ran a blood test. Feiler’s alkaline-phosphate enzyme levels came back elevated. He went through a series of tests, including an MRI and an x-ray, which revealed a seven-inch cancerous tumor in his leg. He was diagnosed with pediatric osteosarcoma, a bone cancer. The narrative of Feiler’s cancer was not one of treatment and remission. Patients with Feiler’s brand of cancer either survive or don't. 

The pediatric nature of Feiler’s cancer—rare in adults—immediately put him in touch with his sense of time. “Everyone else I knew was between twelve and twenty,” he tells the me over the phone, fresh out of physical therapy, “my mother wanted to treat me like a child.” Yet the child role wasn’t easy to occupy. Feiler has twin girls, Tybee and Eden. They were three years old when he was diagnosed with a pediatric disease. “It’s very natural for people in their sixties and seventies and eighties to get sick,” he explains. “I was in my forties. I overturned the natural order of time.” 

There is no “natural order of time” with illnesses like Feiler’s and Downing’s. Time fluctuates between the clinical and the personal, from hospital time to personal time, family time, surgery time. Yet with an outcome as severe as death, it’s all personal. Time is measured both by the normal—deadlines, birthdays—and the immediate. Sometimes emergency measures are taken to preserve life in the long-term. 

Then there are the scheduled procedures, the consultations, and the scans, always the scans, which produce the most visible evidence of time passing. Feiler’s osteosarcoma disrupted his normalcy in its entirety. 


Saving Time

Downing’s medical history can at best be described as irony—at worst, as a series of near fatal errors. After the discovery of his gene mutation, a cardioverter defibrillator (ICD) was implanted in his chest in July 2004. In addition to the ICD, Downing recounts, the hospital “kindly gave me a staph infection.” The device was removed in early September of the same year, the infection tended to, and soon a new ICD was implanted. The new one stayed in Downing’s chest for three years, until a Wall Street Journal article informed him that the device contained faulty lead wires, known to induce—rather than prevent—heart attacks. It took Downing a year to convince the hospital of their second error, sending weekly electronic transmissions, which demonstrated decay in the device’s lead wires. Downing's doctor performed the fourth surgery on his chest in December 2008, removing the faulty lead and the device which had been originally implanted to prevent sudden death. In its place, a new device—with the same make of lead wires Downing received in 2004—was implanted. Medical error forced Downing closer to the hospital system. As a patient, he was linked to the hospital irreversibly. It had the power to save his life, and, unwittingly, to end it. 

Control in a clinical setting, Downing soon realized, revolved around whoever controlled the clock. So he pushed back. When doctors wanted to speed things up, he would slow them down. He’d refuse to put his clothes back on until all his questions were answered. Perhaps the urgency he felt in the examination room, and in the diagnosis of HCD more generally, led him to demand the attention he sought. He called his doctors by their first names, resisting the hierarchy established every time their professional title was used, a part of his effort to work against the hospital language. It was, as he emphasizes, “a shift towards two adults in the room.” This he saw as the avoidance of an indoctrination into hospital culture, in which the doctor’s time was more valuable than the patient’s. He did not let his life be measured by the hospital’s order. To his surprise, the doctors and hospital staff he met with were not as resistant as he predicted. Theirs was a hierarchy subject to alteration.

Conscious of his potential for influence in the room, Downing’s desire to avoid patienthood was, ultimately, an act of self-preservation. “My goal was not to have an emotional life based on the terms of the medical world,” he tells me. Here, he doesn’t laugh. “They felt like terms that could alter my medical life forever. One of my principal aims was not to become a patient.”

This demand of presence is not as readily available to others working through similar diagnoses. Often, even recognition as a person, let alone a patient, is an opportunity not afforded to most individuals within a medical setting. This kind of agency often works along lines of race and class. The average patient visit usually lasts under fifteen minutes, and can dip lower in hospital settings which predominantly serve people with marginalized identities. 

Downing soon discovered that his understanding of patienthood required constant maintenance. Despite his moments of acting out, his indoctrination occurred on many levels, even in the use of language by the hospital. After his visits, he’d ask to see his medical record, where he found language that he describes as “remarkably prosecutorial.” The language of the hospital forced him towards a constant state of fault or malady. “The patient denies having a headache,” the record would read. Even this was an assertion of the clinical setting. 

Downing thinks about his time, as it pertained to patienthood, often. “I was always on their clock,” he tells me over the phone, referring to the doctors he saw during treatment. He thinks of time as currency, and he notes, “depending on who’s issuing the currency, the value changes.”

“I’m obsessed with time. I’m a southerner, southerners like time. Time is a thing of mine,” Feiler tells me. There is a narrow window between diagnosis and treatment. This, he assures me, is where time really starts to get to you. Where “you give up control of decision-making, and you give up control of time," he says. "There is a gap. The number one task of the patient in the gap is to make sure you are comfortable with the medical team you have.” He talks about cancer like a packing list, with a personally derived agency not unlike Downing’s. Don’t head into it without doctors you trust; doctors you have confidence in to make the right choices for you when you can’t make those choices yourself. “I didn’t want to be a hunch referee,” he explains. He didn’t want to delegate each doctor, because he continues, “that is deadly; psychologically it is paralyzing if you don’t have confidence.” 

“It’s fundamentally dehumanizing to enter into a medical journey of the magnitude we’re talking about,” Feiler tells me, his voice full of conviction. He wanted to infuse his treatment with humanity, so in the first ten minutes with his doctor, Feiler told him he was a circus clown in college. His doctor, he learned, had worn the mascot costume in college. “Suddenly we had a connection,”  Fieler notes, “we weren’t just doctor and patient.” 

In the clinical setting, Feiler noticed the passage of time most in his oncologist. While his surgeon and physical therapist saw specific details of his cancer: his leg on the operating table, his attempts to walk, his oncologist saw it all. In nine months of treatment Feiler detected a real change in his oncologist’s demeanor. His distance shrunk in line with Feiler’s prognoses: “About halfway through we detected positive signs about the chemotherapy being effective. Slowly he lowered the mask and became a more real person.” Nurses offer emotional support from the get-go, but doctors take time, Feiler explains. Survival rides on their decisions.

Losing time to the medical system was frightening for both Feiler and Downing. Yet getting that time back was similarly daunting, especially for Feiler. He describes the end of his year-long treatment as an “enormous psychological crisis,” as his time became his own again; in a way, “it was comforting to have them tell you what to do every day, every hour of every day.” In a post-illness state, hours of the day reemerged, gifted back into Feiler’s hands.  Along with that gift came responsibility. Despite continued visits to the doctor and the frequent physical therapy he endures in his life post-cancer, the nature of his well-being, both physical and mental, is up to him. He uses his legs the best he can. He walks more slowly now, but he walks. 

There is a line Feiler quotes often, from a conversation he had with his surgeon, Dr. John Healy, on the first anniversary of his diagnosis. Feiler asked Healy what advice he would give Feiler’s twin daughters if he died. “Everybody dies,” Healy told him, “but not everybody lives. I want you to live.” 


Making Time

In the Book of Genesis, Jacob wrestles with an angel. The angel, who might be God, leaves a mark on Jacob’s thigh. Feiler holds onto this story, his own history: “I was wrestling with God basically, and I have a mark on my leg, and it goes from my hip to my ankle.” His time in the hospital echoes in his body, the greatest mark of his illness. He carries the physical experience across his skin and in his femur. Forgetting is not an option—not with such a blatant record of damage done, of death surmounted. Feiler puts it this way: “I constantly say to my wife, you forget, I don’t forget. It is physically in my body.” 

Downing sees it every time he takes his shirt off. The ridges of the cardiac device on the left side of his chest, visible beneath the skin. Yet he doesn’t think of it as a piece of the hospital inside him, nor does he think of it as something that is ‘his.’ He describes his relationship to the device “like eyeglasses that are permanently a part of your head.” He doesn’t think of it as something actively saving his life: “it’s never done anything for me.” The device comes to the fore of his consciousness only when he’s forced to think about its space within his body. 

The closest doctors get to Downing’s heart now is through a telemetric cardio monitor. He’s part of the hospital record (patient claims to have nausea) but much less a part of the clinical present. He keeps time by the device in his chest. Is it working? Yes? Life goes on. 

Feiler still goes in for scans. He could measure his time by them, like dates on his internal calendar, even though it’s been eight years since he was diagnosed with bone cancer. He knows when the appointments are coming, and that in these hours he will hand his time back to the hospital. He resists, he doesn’t put them in his calendar. He glides in and out of the big white machine. It tells him, for now, he is safe. His time is still his own. 

Downing’s history draws him close to the “terminal nature of time.” In the medical world, he tells me, “the stakes are somehow always ultimately cast as life and death.” This, in turn, has the power to “change the way you value the currency of time. You aren’t going to be issued an unlimited amount of it.” He’s lucky that anomaly was recognized as pattern, that sudden death could be put off. His medical history is a series of control-oriented events. His body holds the power to kill him. He lives. The hospital nearly killed him. Twice. He holds his time in his chest. This is the thing he will not cede. 

Feiler worries he’ll forget, that the lessons he learned during treatment will become buried beneath quotidian stresses. At the same time, he feels like he knows the secret to life, as he puts it: “The balance between short-term sacrifice for long term gain and enjoying yourself along the way.” Feiler’s illness isn’t his past. Not only did it leave a scar, but he still goes in for those routine scans. And then there’s the physical therapy. “I was literally crying in physical therapy an hour ago,” though whether from the pain or the memory, he doesn’t say. 


JULIA TOMPKINS B’18 makes time to listen.