The Brand New Catastrophe by Mike Scalise, Sarabande Books. Pub date: 1/31/17
“Even though tomorrow’s Sabado,” I whispered to my daughter as I put her down to sleep on a Friday night, “Daddy needs to work.”
“In the hospital? In the ciudad?” Juno asked in her typical Spanglish.
“Si,” I said. “Hay muchos pacientes en el hospital.”
“I’ll see you for the cena?” she asked. Her voice was sleepy.
“I hope so,” I said.
“But why are they in the hospital, Daddy?” she asked.
By this point in our exchange, I was standing in her doorway. “Well, that’s Daddy’s trabajo,” I answered, “to figure out why they’re sick and in the hospital, and then figure out a way to make them better so they can go a la casa.” In truth, I spend my weekends on call plugging holes, applying Band-Aids, holding the fort, whatever cliché best describes the process of seeing 20 to 30 patients I don’t know and making sure they don’t crash until Monday, when the regular, fully-staffed team can take over their care.
I was just about to close Juno’s door behind me when she called out something to me that I didn’t quite hear. I asked her to repeat herself. “What are their names?” she asked.
Juno’s last question assumed that doctors know their patients. Sure, we know our patients’ names and their medical histories, their diagnoses and their medications. In the best cases, we also know their families – their anxious spouses, doting parents, adorable kids, recently deceased pets – and might even speak, at the beginning and end of appointments, in a friendly, informal manner more befitting a backyard barbecue than a doctor’s office. In truth, though, we only know what the patients are willing to share with us.
I once made the mistake of saying to a young man in his mid-twenties, who’d lost his kidneys due to lupus and was now on dialysis, waiting for a kidney transplant, “You have such a great attitude. You’re always so optimistic. It’s got to be hard to keep that spirit up.” I’d known him for six years. We’d traded emails about the Mets and politics and music that had nothing to do with his health. He answered, “No, I break down, I break down a lot, but in my home, with my family. I don’t need to do that in a doctor’s office.” I’ve thought about this exchange at all of his subsequent appointments, even visits in which we’ve discussed how well he’s doing since his kidney transplant.
And I thought about that exchange and Juno’s simple, sleepy question when I read Mike Scalise’s memoir, The Brand New Catastrophe, which relates the story of his pituitary tumor and the hormonal circus he had to navigate before and after its surgical removal. The memoir stretches beyond his medical issues to his relationships with (a) his chronically ill mother, (b) his high-school-through-college-through-post-college girlfriend, who becomes his wife midway through the proceedings, (c) his stoic but surprisingly sensitive father, and (d) a host of friends who’ve served, since adolescence, as practice audiences for the kind of storytelling Scalise perfects over the course of his book. His tone is honest, serious when it should be, and funny when it doesn’t have to be. I’m sure most readers will finish the book feeling like they “know” Mike Scalise. I wonder, though, what his doctors will think. Did they know Mike Scalise at the time of his treatments?
I’m interested in the roles doctors and patients play for each other. I do this all the time, from both ends of the exam table. I use the lower register of my voice and try to sound like Don Draper from Mad Men when it’s important that my patients buy into everything I say. “This medicine will work, but only if you take it exactly as it’s prescribed,” I might say in my Don Draper voice, even though both parts of that sentence are partially inaccurate (i.e. the efficacy rate is only about 75%, and a missed pill here and there won’t affect therapeutic drug levels). And when I visit the dentist, I flat out lie about how often I floss. I play these roles because I believe that my patients want a confident, TV-like doctor and my dentist wants a patient who follows her instructions. Scalise’s memoir, in particular the contrast between his own medical adventures and his mother’s experiences with chronic congestive heart failure, is a critical analysis of how patients should approach the “sick role.” And there are countless doctor-penned books (Bernard Lown’s classic The Lost Art of Healing, for example, and virtually every Atul Gawande title) that dissect the “physician’s role.” But does all this role playing actually bring doctors and patients closer together or, unintentionally, further drive a wedge between us?
I asked Scalise this question (over email) after finishing his book. He’d never heard the term “patient role” but championed the performance aspects of illness encounters. “Medical interactions are theater,” he wrote back. “They are, in so many cases, very rehearsed on the doctor’s side, but also on the patient’s side, too. The ‘medical crisis template’ is so widespread in popular culture as a genre, and has been for so long, that its influence on real life patient-hood is pretty deeply ingrained. In that sense, slipping into that ‘role’ of ‘Medical Patient’ can feel almost reflexive. The transfer of control to the hospital staff, the ‘strong face’ one is expected to put on, the opinions about the food, the long-form small talk with your patient ‘roommate’ – it can feel stagey or rote in the way that being a commercial airline passenger can, which is unsettling, because you’re typically at a hospital for a very vulnerable, intimate, and (to you) unique reason.” He followed up on that answer: “My instinct as a patient has always been to destabilize role expectations between my doctors and me – sometimes in good ways, sometimes in ways that definitely did not work at all – if only to try and get us to something a little more human.”
In The Brand New Catastrophe, Scalise doesn’t universally succeed in this quest. When he’s forced to move from New York to Washington D.C., he’s surprised by how impersonally his Manhattan endocrinologist reacts to the news. She simply hands him the name of an expert who will take over his care in Maryland and wishes him well. In the hospital, on his first presentation, his closest connections come not with the physicians but the ancillary staff – the nursing aids and audiology techs who warm to his jokes and surreptitiously bring personalized gifts to his bedside. Meanwhile, the doctors that shuttle in and out of his room are portrayed as smart and insightful caregivers, as the only ones who can ultimately give him a diagnosis and a route towards regaining his health, but they are flat characters. They don’t seem to understand or, more worryingly, care to understand the young man whom they’re treating. I pictured myself among those doctors and had to admit I’d probably have missed the personality behind the tumor, too. I might have laughed at one of the many jokes Scalise tells from his hospital bed, but just as likely I’d leave the room thinking he was immature, in denial about his illness, and, perhaps, getting a bit too cozy in the “patient role” for my comfort.
When I asked Scalise why he thought he bonded more with the non-physicians than the physicians who took care of him, he pointed out that he did have what he called “human breakthroughs with other physicians… There were lower-ranking doctors during my brain tumor stay that I ran into during follow-ups with my surgeon, and I maintained a nice shorthand with them. Given what I’d seen so far, I guess I felt like, ‘If I just try to give these doctors a different patient experience than what they’re usually given, maybe I can change the terms of the dynamic,’ which I know sounds arrogant and ridiculous, but I was 24. I had this preservative hope that if I made the medical crews like being around me, I’d get better quality care.”
He admitted, though, one striking failure. “There was one young doctor during that first operation with whom I struck up the same kind of closed-circuit friendship that one might with, say, a fellow vacationer at a resort or a bartender…. I felt like I had an ally. We’d make tumor jokes during his rounds, talk sports or whatever. And then, the night before my tumor operation, I made a horrible, half-kidding remark along the lines of ‘If I die on the table tomorrow morning, it’s on you, OK?’ And he made it very known that we had, as the writer Charles Baxter might put it, passed through a one-way gate where I’d violated the doctor-patient social terms and we’d never be cool again. Which we were not.” Again, reading Scalise’s words (now in email rather than in book format), I kept worrying that I would have acted just like that doctor.
I don’t think these kinds of worries are unique to me, either. I think there’s a tremendous distance between what physicians think about the lives of their patients and what patients think about those very same lives. In her essay, “Twitchy,” about her own experiences as a difficult dental patient, Sallie Tisdale, a writer who’s also worked as an oncology nurse, confesses, “I am periodically reminded by my patients that what is normal to me (the sounds, the smells) is a strange and frightening world to them.” What that young doctor failed to recognize, and what I fear I’d have failed to recognize, too, was that Scalise’s joke wasn’t a violation of “the doctor-patient social terms,” because the joke was a response to being in “a strange and frightening world.” And what Scalise failed to recognize, and what so many patients fail to recognize, too, is that the doctor’s cold response, the dissolution of what appeared to be a friendship, was borne from the same fears, namely that something wrong could happen to a young, vibrant, likeable patient. Neither patient nor doctor was communicating honestly; as a result, things would never be cool again. “I still think about that disconnect,” Scalise told me, “and why we couldn’t figure out what the other was saying, and how it remained as this heavy static we allowed to go totally unresolved.”
What line, exactly, had Scalise crossed with his “if I die, it’s on you” joke? What was the specific “disconnect?” I can’t speak for Scalise, but I think I can speak for that young surgeon who was so turned off by the joke, and I can definitely speak for myself. Despite the jocular tone, Scalise essentially removed all the pretense of their relationship with just a few words. I’m trusting you with my life, he communicated to the young surgeon, and the young surgeon wasn’t ready to assume that responsibility. Today, with almost two decades of doctoring experience under my belt, I’d like to think that I’m ready for such responsibility. And while taking on this responsibility can be emotionally exhausting, no matter how long a doctor’s been practicing, the doctor’s role is never to betray that exhaustion. The young surgeon failed Scalise not by taking offense at Scalise’s pre-operative joke but rather by letting Scalise know that the joke stung.
I constantly remind myself that I’m not a hero, that there’s a limit to what I can accomplish in a single day, in a week, a month, a year. There are kidneys and lives that I cannot save. At least once per clinic day, I tell a patient his or her kidneys are failing, and there’s nothing I can do to stop the failure. But I never betray how hard the job is for me. That’s not my role. I’d lose my patients’ trust if I ever made that kind of confession.
On a Saturday morning, as the on-call weekend nephrologist, I told a young man whose kidneys were failing far more rapidly than the weekday team had predicted that I wanted to start him on dialysis. “It’s not an emergency,” I said just a few minutes after introducing myself. “Not yet, but if we don’t get you started by the end of today, I’m afraid we’ll run into an emergency overnight.” The patient, through labored breaths, agreed to my plan and said he didn’t have any questions. He even forced a smile for me. This was about two months ago. I don’t remember his name, I barely remember his face other than that forced smile, and I don’t know a single thing about him other than why his kidneys deteriorated so quickly. And yet I was the person who told him on a rainy Saturday morning that his kidneys had stopped working and a machine was the only way to prevent him from dying of kidney failure. How awful, how “strange and frightening” it must be to hear such news from a complete stranger.
I don’t have an easy solution to this “disconnect,” to the problem of doctors and patients playing roles in disjointed theaters. Reading memoirs like Scalise’s – and other patient narratives, like Sarah Manguso’s The Two Kinds of Decay and Belle Boggs’s The Art of Waiting and Lucy Grealy’s Autobiography of a Face – helps doctors see lives beyond diagnoses. But doctors don’t seem as inclined to share in the opposite direction. Most physician “memoirs” are situated entirely within the hospital’s walls, relaying the horror stories of residency training or the behind-the-scenes machinations of complicated surgeries. The lives of doctors remain a secret for the most part.
When my patient, Nick, recently told me he was planning to take his girlfriend to Disneyworld as a surprise trip during which he’d ask her to marry him, I did not respond that I was about to take my family there for a long weekend. This would have been the most logical response, because we’d be there at the same time. We might run into each other. But I didn’t want Nick to know that. I didn’t think he needed to know that. His kidneys were failing, and he wanted to get married before he needed a kidney transplant.
We took a 6:00 AM flight from Newark to Orlando, which meant we had to leave our home at 3:45 AM with a 5-year-old and a 2-year-old. By the time we were on the shuttle bus from the Orlando airport to our hotel, I was exhausted. I encouraged Juno to rest her head on my lap for the 30-minute drive, and I looked around the shuttle bus to see if I was the only one with a sour expression on his or her face. I saw someone who looked like Nick, but, of course, it wasn’t him. He’d arrived in Disneyworld a few days before. I wondered if he’d already popped the question, and the thought of him having done so and getting a yes made me smile.
“Daddy,” Juno asked, looking up from my lap, “why are you so feliz?” She laughed at her question.
“Because we’re almost there,” I answered.
Andrew Bomback is a physician and writer in New York.