Diagnosis Is Not Death

“Will it always feel precipitous to arrive at the terminal?” So asks Susan Gubar, a Bloomington, Ind.-based feminist literary scholar, toward the end of Memoir of a Debulked Woman, her brutal account of doing battle with ovarian cancer, the deadliest of all the gynecologic cancers. According to Gubar, it is an ailment too often misdiagnosed and insufficiently studied.

But her question, like so many of the incisive points Gubar makes in her book, resonates with the hale as well. After all, she reminds us, we are all “in remission from the terminal condition known as mortality.” Yet how we all deal with this condition varies greatly. Some, like Gubar, forgo religion as any kind of comfort. They have never found fellowship in a religious community even though they might have grown up with some type of religious identity. Others actively engage religion to deal with the terminal condition—they lean on faith in God or on a spiritual community to steel themselves. Such is the case of Ellen Schecter, an unwell woman whose memoir Fierce Joy comes out today and complements Gubar’s in the contrasting experience she offers of living with illness.

Gubar wrote her memoir while undergoing chemotherapy and surgeries to treat her illness and the related abscesses, ileostomy, infections, and pain she suffered. Memoir of a Debulked Woman is full of references to literature, art, poetry, and even scripture that similarly engage mortality. These clearly helped her feel less lonely in considering her own death, organize her thinking about her circumstances, and perhaps distract her from them, too. At times, as Gubar makes clear, any distraction was impossible—the extent of her physical tortures trumped any other thoughts, and she lost the ability to remember anything or to pay attention to other people. At that point, she realized, “there might be worse conditions than mortality.”

That change, though, is remarkable because in the main Gubar seems almost hyper-attuned to the needs and emotions of dear friends and family. She is sensitive to the burdens her illness puts on her husband, Don, whose first wife—whom he attended to with equal care and love—died of cancer. She worries about her grown daughters and opts, in part, for treatment both at the first diagnosis and when she experiences a recurrence, so as not to leave them motherless. There is more to it, of course. It takes some time for her thoughts to develop vis-à-vis the impact her absence would have on her children; earlier in the memoir, Gubar has the initial thought that now, in her sixties, she has led a full life, having raised a family and achieved professional successes, and so it would not be such a terrible time to die. Unlike people who bemoan a diagnosis with the question “why me?” she writes, “It never entered my mind that I might be exempt from the common lot. Why not me?” But in spite of her even-keeled approach, an instinct not to give in to the inevitable just yet kicked in. In spite of her rationale, the desire to continue living—and the dread of dying, of entering into something of which, in contrast to life, she had no first-hand knowledge—won out.

Gubar seems about as selfless a patient as you could imagine. She smartly remarks that the healthy treat the sick as “an icon, a fetish.” She displays minimal self-pity here and offers ample and inspiring examples of her agency in observing what’s around her and being grateful for what she does see—flowers, her godchildren snacking, her grandson at the shores of Lake Michigan, music, love.

In this respect, she shares much with Schecter, a Manhattan writer whose Fierce Joy describes the mounting challenges she faced as she dealt with the twin diagnoses of Lupus and Chronic Inflammatory Neuropathy, a neurological disease. They part course, though, in their connection to Judaism: Gubar, though Jewish by birth, scarcely looks to religion for comfort. Instead, she mines what she loves—literature, art, and relationships—to buoy her spirit and remind herself of all that she still has. Schecter, for her part, returns to religion in the course of her treatment and, therefore, in the course of her memoir. It becomes not merely a comfort, but a spring from which she can draw a profound sense of appreciation of both her own life and of existence in general. Religion offers her new forms of community and purpose. While neither book is overtly instructional, both share a bottom line: Diagnosis is not death. Surely, it might lead there—fortunately, neither writer is a Pollyanna—and it’s advisable to adapt to new circumstances and within those confines, strive to enjoy what you’ve always loved.

Schecter literally stops to smell the roses as she makes her slow way home with braces on her legs. Like Gubar, she, too, is blessed with a loving family and with critical resources: insurance, curiosity about her condition’s origins and development and about the best ways to deal with her illness. She, too, is fiercely attuned to the ways that strangers treat her, often with condescending pity or quiet relief that she’s the sick one, not them.

Whereas Gubar’s memoir is heady, at times intimidatingly cerebral, Schecter’s account is more accessible, even haimish. One approach is not superior to the other—if anything, they attest to the fact that every individual has a unique way of coping with both her life and death and furthermore, with describing them.

Schecter, like Gubar, comes from an immigrant family. In Gubar’s case, her parents were German refugees, and much of her extended family was killed in the Holocaust. Suicide is a tragedy that recurs—her father, once relocated to Brooklyn, takes his own life, leaving her mother to raise two children on her own. Gubar’s not religiously identified, and she notes that the specter of being Jewish in the United States during the McCarthy years further affirmed her family’s choice to disengage with a heritage that seemed to invite only trouble. She dispatches with this sad history in a handful of pages.

Schecter’s family likewise felt threatened during the McCarthy era. Her parents’ almost total rejection of Judaism broke with her immigrant grandparents’ adherence to tradition. Of course, her grandfather—a belligerent, judgmental, and seemingly unhappy man—made such a break understandable; who’d want to take part in religious functions with him? Yet Schecter got sufficient exposure to the tradition before her family threw up their hands that when she attends a synagogue as an adult—B’nai Jeshurun, a popular congregation in Manhattan known for its singing and lineage of liberal rabbis—she feels the bittersweet twinge of a homecoming. The communal singing makes her weep tears of grief over her physical deteriorations and humiliations and over the years she went without sufficient spiritual nourishment. But the tears are also of happiness—of finding a feeling of acceptance independent of her family.

Slowly, Schecter finds in Judaism a sense of nurturing that, for some time, she didn’t realize she craved. “I not only want to make peace with my illness,” she observes. “I want to sanctify it. I want to discover—or create—a deeper, even sacred meaning for—from?—my illness.” Judaism helps her do so.

She learns to chant Torah, she has a bat mitzvah, she joins a Jewish healing group—all of which give her the means to be herself more fully, provide ways to structure her time when illness and treatment have made it impossible to hold a full-time job, and to reject the definition imposed on her by others as somebody somehow lesser. “Even though my body is damaged, my brain and soul are fully alive,” she observes; her book and Gubar’s testify to that truth with gusto. Illness does not always rob us of our spirit, and there is solace to be found in that for that inevitable time when we each must look squarely into the face of our own mortality.

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Sara Ivry is the host of Vox Tablet, Tablet Magazine’s weekly podcast. Follow her on Twitter @saraivry.