A few days after the 2016 presidential election, I did a weird, sobbing thing. I copied Walt Whitman’s “A Noiseless Patient Spider” onto a card and posted it in my office. “And you, O my Soul, where you stand,/ Surrounded, surrounded, in measureless oceans of space,” I wrote. 2017 began, and that space had become everything; I just sat alone in the middle of it, swaddling myself in anxiety. I blocked myself from reading social media because I was afraid to feel angry about my friends and family. Every day was another national crisis; my husband and I started redirecting our money and attention to newspapers, charities, and organizations that protect —we’ve deemed these civic tithes. But I felt scattered and incapable of sustaining a thought, let alone a life of critical reading, or engagement with my government. I wanted to slip into a dark crack and hide there, unnoticed. I didn’t want to read. I didn’t want to move.
To borrow from Whitman, my 2017 in reading was about the bridge I needed out of that dark space; the tentative, then hopeful casting of webs until something caught. Two books I read early in the year were bridges for different reasons. Courtney Maum’s novel Touch celebrates a future where the latest trends are freedom from technology, and physical human connection. That thought was a balm. The second was David McCullough’s collection of speeches, The American Spirit. Frankly, it gave me hope because it reminded me that America has been in dire straits before—awful messes—but is built on imperfection and persistence.
I was reminded that books are products both of when they are written, and the world they are born into. I read Viet Thanh Nguyen’s phenomenal short story collection, The Refugees, the same week the president first cruelly called for a ban on all refugees entering the country. Many books I read—both fiction and nonfiction—in 2017 started to coalesce around the same idea: we don’t believe each other. Whether we’re talking about political needs, or allowing immigration, or honoring the story of someone who has been abused, belief is the central tenet of the conversation. Nguyen’s stories, like Roxane Gay’s memoir, Hunger, Hillary Clinton’s post-election memoir, What Happened, Mohsin Hamid’s magical novel Exit West, and Jesús Carrasco’s novel, Out in the Open, all deal in some way with the questioning of personal truth. This makes sense to me, given how we’ve treated truth like a toy for the last 10 years. I find that exhausting.
I caught up on titles I’ve missed from years past, finally immersing myself in things like Phil Klay’s Redeployment, Chimamanda Ngozi Adichie’s Americanah, Colson Whitehead’s Underground Railroad. I read George Saunders’s Lincoln in the Bardo like everyone else and, like everyone else, was amazed. Two books from 2017 that stood out were Attica Locke’s smart thriller Bluebird, Bluebird, which moves beyond easy tropes of good guy/bad guy to tackle real issues of race in East Texas, and Andrea Lawlor’s gutsy, hopeful, gender- and shapeshifting novel, Paul Takes the Form of a Mortal Girl.
I read wonderful books by people I adore: Liska Jacobs’s novel, Catalina, Tod Goldberg’s sequel to Gangsterland, Gangster Nation, JoAnn Chaney’s thriller, What You Don’t Know, Natashia Deón’s novel, Grace, Deanne Stillman’s historical nonfiction Blood Brothers, and Elizabeth Crane’s short story collection Turf. I read a funny memoir about a brain tumor: Mike Scalise’s The Brand New Catastrophe. I read Joan Acocella’s Twenty-Eight Artists and Two Saints and wondered if I’ll ever be the kind of critic I want to be. But all of these books were daring, moving, life affirming. And when I couldn’t handle the all-conflict-no-resolution scroll of social media, these words brought me back to myself and back to a sense of my place in the world. If there’s a slow words movement, like slow food, I want to join it.
Most importantly: This summer I attended a teacher institute at the Library of Congress, and worked on a research project about the WPA Federal Writers’ Project—a time when our government prioritized putting writers to work by having them collect personal histories and write regional guides—writers like Ralph Ellison, Richard Wright, and Zora Neale Hurston. I knew that the Library has a vast array of online and physical resources, but what I didn’t know is that it relies on an almost parallel network of human historians. As I navigated my way through the various reading rooms, I was guided by experts in American Folklife who showed me slides of Hurston in Florida and played recordings of her singing; I was handed boxes of photographs of Federal Writers’ Project Book Fairs by WPA experts in the Prints and Photographs room, and in Manuscripts, an excited WPA expert pulled four boxes of FWP minutes, hand-written notes, and records for me to read. I kept wondering why they were letting me look at all of that stuff. (What if I sneezed on something?) But all I needed was my library card. My most powerful moment in reading was sitting in those quiet, beige rooms in D.C. with American history in my hands. Libraries are still a beautiful democracy of ideas. Despite the sky falling every day in 2017, we have that. It was the thread of connection I needed. O my soul.
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Mike Scalise begins his illness memoir, The Brand New Catastrophe, by reflecting on the art of storytelling: “Telling a good catastrophe anecdote,” he writes, “means becoming a maestro of sympathy. People’s reactions to these kinds of stories usually involve some defense mechanism…As the teller of the anecdote…this is the wrong place to be.” Because the storyteller wants to avoid, above all else, appearing pitiable, he must find different ways to engage the listener. “The trick to keeping them engaged,” Scalise explains, “is to focus on the oddities and ironies that would seem incredible and ridiculous in any context, not just that of your disaster.”
Putting his cards on the table from the start, Scalise not only challenges us to judge his book according to his own criteria, but asks us to consider the conventions of the genre he is writing in and what purpose — both positive and negative — these serve. As Scalise realizes, it is almost impossible to write a contemporary illness memoir, a genre whose arc of sickness-to-health has been exhaustively traced in hundreds of books, without this kind of reflexivity. As such, he keeps these meta musings going throughout the narrative, questioning the way in which he tells his own story and why.
The first thing to note is that Scalise lives up wholly to his own criteria. In relating the story of his pituitary tumor — which stimulates an excessive degree of growth hormone and then bursts, leaving him unable to produce any — Scalise takes on a gently self-mocking tone coupled with a penchant for relating humorous incidents. His reaction to the possibility of part of his buttocks being inserted into his brain (“Take it from my ass. I want my ass in my head.”) or his dry telling of a disastrous interview he conducted with a rock singer are exactly the type of “oddities and ironies” that make his book both so engaging and free of the self-pitying tone he advised tellers of catastrophe anecdotes to avoid.
But beyond simply providing a rubric for how to read his novel, Scalise is obsessed with narrative. Part of the arc he traces in his book is the shift in the way he tells his story to the many curious people he meets. He first develops a taste for this kind of self-revelation when, after a high school swimming accident, a false rumor spreads that he has died. Because he is, in fact, very much alive, it seems to his classmates that he has come back from the dead and he is called on frequently to speak about his accident, an experience he comes to greatly enjoy. “I was just a conduit for an accident narrative,” he writes, “and filled a need for redemption that many in my high school longed to experience. What surprised me was how electric it felt to be that conduit.”
With that revelation, he is off and running and so, when he comes down with the pituitary tumor, he revels in his ability to one-up anyone else’s conversation with his own narrative. At a party shortly after his diagnosis, for example, he responds to a woman’s question about what he does by saying, “I walk into Brooklyn emergency rooms with super crazy brain tumors that explode in my head” before hijacking the party with his story. In this, he aligns himself with many other writers of illness narratives who understand that, although their disease may be horrible, it also confers a sense of uniqueness and individuality on the sufferer, at least temporarily.
In Lucy Grealy’s 1994 memoir Autobiography of a Face, the narrator comes down with a tumor in her jaw at the age of 9 which causes half of her face to become collapsed; leaving her with a striking facial difference for which her schoolmates mock her. Although the whole experience is traumatic for Lucy, she comes to take a defiant pride in her situation. Narrating a birthday party that she worked at as a teen, she writes “while the eyes of these perfectly formed children swiftly and deftly bored into the deepest part of me, the glances from their parents provided me with an exotic sense of power as I watched them inexpertly pretend not to notice me.” Later, when she starts reading Russian novels, she further embraces her outsider status, looking down on her classmates with a “perfectly calibrated air of disinterest.”
Similarly, Sarah Manguso, in her 2008 memoir, The Two Kinds of Decay, experiences a sense of superiority because of her long bout with the autoimmune disease, chronic inflammatory demyelinating polyradiculoneuropathy. “When a friend or stranger mentioned anything about a difficult or noteworthy event,” she writes, “I chose one of the countless hospital visits from recent memory and told the little story in a way that prevented further conversation about it or any other subject.”
Scalise isn’t quite so brutal with himself, but he does come to realize the limits of the narrative impulse. As the disease goes on and he accustoms himself to living with it, it no longer seems so necessary to tell everyone about it. When, at a party many years after his diagnosis, a guest tells him about his sick cousin, Scalise begins to tell his own story and, ignoring his own prescriptions about the catastrophe anecdote, he tells it flatly, almost perfunctorily. Reflecting on his own lingering need to narrate, he writes “in my mind I was shoving forward the parts of my pituitary tumor’s tale that made me special…I wanted to replace whatever meaning I feared people projected onto me when they saw my face, my eyes, my hands.” After years of defining himself solely by his illness, however, the appeal wears off and he begins adjusting to his new life as a person who just happens to be ill.
If defining ourselves by our disease is one of the principal traps for the reflective sufferer, then a different narrative snare awaits the illness memoirist: tracing a too-neat trajectory that leads the narrator from sickness to health and a triumphant ending. One of the reasons why contemporary illness memoirs, with Scalise’s as a prominent example, take on a meta aspect, is because, at this late date, everyone is hyperaware of the dangers of an easy arc that gives false reassurance to the reader. Grealy touches on this need when she realizes that the simple narrative of her finding her true face after many surgeries is misleading, and she finds freedom in that revelation. But it is Manguso who most complicates this need for easy coherence.
Manguso is careful to insist upon her story’s adherence to convention. At the end of the book, she declares, “This is the usual sort of book about illness. Someone gets sick, someone gets well” before noting that “most people consider their suffering a widely applicable model, and I am not an exception.” But it is impossible to take her at her word. While the bare facts of her story do lead from sickness to a tentative health, Manguso is intimately concerned with the ways in which we disarrange our own narratives.
“How long was I sick?” she wonders late in the book. She responds by noting that her first symptoms appeared on March 26, 1995, but that, before that, she had had a head cold for weeks which had probably triggered her disease. She had refused to give in to that head cold, allowing it to linger, held slightly at bay, because her choir was giving a performance and she was supposed to be signing a Gregorio Allegri setting from 1630. “But that story,” she writes, “began in the seventeenth century, before Mozart was even born. So when did I first get sick?” As Manguso realizes, no narrative is self-contained because everything is related to everything else. Although she is forced to provide a shape to her story, she chooses a fragmented one, built on a series of a short chapters that are often little more than short anecdote.
Scalise gives his story a more traditional form, but he understands just as much as Manguso the importance of complicating his own narrative. “In the early days,” he writes late in the book, “I endured a disaster, then moved on to tell the tale of it. I made it mine, or at least appeared to. Now I was unmoored and tentative, divorced from that time, part of me glad and bidding it good riddance, but another, louder part of me wishing…that I could return to my lovely tenure under its full influence.” Here as elsewhere, Scalise suggests that the real illness narrative is not about overcoming the initial onslaught of the sickness, but about how to live on in its aftermath, having to define yourself as existing, at long last, apart from the mere fact of your disease.