Read it and weep: The paradox of illness narratives

A girl in red boots sits in a hospital bed with an IV drip attached to her arm.
(Nina Potischman • The Student Life)

CW: chronic illness, mental illness, suicide

As a sophomore in college, writer Sarah Manguso began experiencing symptoms from an autoimmune condition in which antibodies are secreted into the blood, attacking nerve cells. The onset of her condition, called chronic inflammatory demyelinating polyneuropathy, led to severe symptoms and grueling medical procedures that offered only temporary relief. Though treatment with steroids induced a remission after four years, Manguso notes that she still “act[s] as if [she expects] it to come back tomorrow.”  

Manguso’s first memoir, “The Two Kinds of Decay,” chronicles her nine-year struggles with CIDP and depression. With the protection of a long remission, Manguso returns to her illness — which she describes as “the hardest thing I’d ever have to do” — by writing about it in order to “try to remember what happened. Not understand. Just remember.” Like her other work, “The Two Kinds of Decay” is defined by its sparse poetic language. The distilled nature of her prose reflects the selective process of memory.

Yet while Manguso’s work claims to distance itself from the quest for understanding, her interest in drawing meaning from her suffering is evident. “All autoimmune diseases invoke the metaphor of suicide,” Manguso writes. “The body destroys itself from the inside. I secreted poison into my blood.” The relationship between Manguso’s “suicidal depression” and “suicidal autoimmune disease” becomes a focal point of her writing, an open question that she invariably returns to.

Here, Manguso — perhaps inadvertently — maps intentionality onto her illness, framing her relationship with her body as antagonistic and war-like. These descriptions point to the difficulty of writing that purportedly serves the sole purpose of recording memory, rather than making sense of experience. Articulation usually contains interpretation; Manguso’s writing attempts to inscribe coherence.

The representation of autoimmunity as self-destructive is not uncommon. In “Self, Not-Self,” Ed Cohen mentions a doctor who explained his Crohn’s disease as “eating yourself alive,” which, he sardonically notes, is a description that hasn’t “really been all that helpful in the long run.” Yet unlike Manguso, Cohen does not take these metaphors as natural. He begins to wonder: Where does this discourse come from? What does it do to someone to imagine their body eating itself alive? What ways of speaking about autoimmunity have we failed to imagine?

My sophomore year of college, I was diagnosed with an autoimmune disorder leading to multiple hospitalizations. At the beginning of my diagnosis, it was difficult to think of my symptoms outside of the context of self-destruction. That I imagined the pain as self-inflicted made my symptoms feel even more severe. 

My early writing about my diagnosis expresses the idea of my illness as a physical manifestation of self-criticism, hatred turned inward or a failure of will. I wrote in my journal: “Does it matter that my body is attacking itself?” The answer, I decided, was yes. Because, as Cohen writes in “A Body Worth Defending,” metaphors function “not merely as an instrumental manipulation of the world but also as a new way of living in the world.” The language one uses to make sense of illness matters, actively shaping the experience of being ill. It is important to choose metaphors carefully.

There are significant problems with Manguso’s descriptions. Her representations of illness erase biological complexities of autoimmunity, and toe the line of blaming others with autoimmune diseases — “Isn’t frailty often a choice?” she writes. “And if frailty is a choice, then isn’t an autoimmune disease a semi-intentional suicide?”

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Yet I don’t think it’s worth dismissing her book entirely on these grounds; her writing authentically represents her experience, posing internal struggles as questions I have asked myself in different terms. If her purpose is to tell readers that they’re not alone in feeling that they somehow bear responsibility for their suffering, Manguso succeeds. At its best, “The Two Kinds of Decay” is a portrait of a crucial paradox at the center of illness: feeling simultaneously powerless, and unbearably responsible for the events of one’s life.

Though premised as an exercise in memory, I read “The Two Kinds of Decay” as an act of mourning. In a section titled “Before and After,” Manguso laments: “The hardest thing I’d ever done, the hardest thing I’d ever have to do, had made me a worse person!” Incisively sardonic, Manguso points to a broader problem in common conceptions of illness — the fetishization of adversity, in which suffering is an idealized vehicle of transformation.

Because what happens if illness has no deeper meaning, no cosmic purpose? What if you are left only with memories of something that seems without cause? For me, there was security in framing autoimmunity as self-inflicted harm; it was easier to feel I had done something to cause my suffering than to accept that I live in a world where suffering occurs without reason or justification. Maybe suffering will make you better, and maybe it will not. Often causes are unintelligible, and there is no broader purpose; things happen, and you have to live through them.

I am critical of Manguso’s need to salvage something from illness, but I also understand it. During a hospitalization for a severe flare, I wrote — about my body, about pain, about fearing death. Writing became both an expression of grief, and a testament to the fact that I had not lost myself in illness. “You inhabit things differently when you know you will write them down,” I told myself. I have always wanted to be the kind of person on whom nothing is lost. 

“This is suffering’s lesson,” Manguso concludes. “Pay attention. The important part might come in a form you do not recognize.”

I am weary of Manguso’s attempts to cobble together an understanding of capital-L Life from the depths of suffering. But I admire her relentless effort to portray the enduring humanity of her protagonist, and the complexity of her experience. In her ambivalence, Manguso circles around the inherent tension in writing about and living through illness. She refuses to reduce her illness to a metonym for her “own whole decay,” nor an event without significance. The events themselves move, “fly[ing] until they change into new forms, simpler forms, with ever fewer qualities and increasingly beautiful names.” 

“I am alive, I am alive, I am alive,” I wrote in my journal. Perhaps, therein lies the important part. Chronic illness, like life, is ongoing. Manguso hopes that in this openness lies beauty.

Nina Potischman PO ’21 is TSL’s book columnist. She is an English major from Brooklyn, New York who likes to make art and eat bagels.

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