Indelible Memories, Legible Bodies: The Case of Graphic Illness Memoirs

nancy k miller - indelible memories - graphic memoir

I will be giving a talk on November 20th at an interdisciplinary conference in France (in French, English, and Spanish) with the overarching theme: “Memories, Marks, Imprints.” I show how the words and aura of an illness diagnosis and its subsequent treatment—my examples will be cancer (David Small’s Stitches) and mental illness (Bobby Baker’s Diary Drawings: Mental Illness and Me)—mark us in mind and body. This continues my earlier work on the trauma of diagnosis in graphic memoir, but with an emphasis on how the language itself, as delivered in most medical settings, can wound. (Fortunately, I get to do this in English—and with slides.)

View the conference information page and/or PDF. See also selections from my ongoing project, My Metastatic Life.

    Reading Ferrante

    It might seem odd to use the word rapturous to describe a reaction to a piece of literary criticism, but I can’t think of a better one to account for the pleasure I felt reading “The Function of Pettiness at the Present Time.” The essay was possibly the only criticism of the Neapolitan novels that captured (could, I now think, ever capture) my experience of living with—and within—those four volumes.

    Sarah Blackwood and Sarah Mesle nail it for me when they ask: “What if you know something about a text that you can only share at great cost, or simply don’t want to share?” What if what you know has to do with a friendship so like Lila and Lenù’s in its intensity that the novel seems to explain what went wrong in the friendship, theirs and, as I’ll say, mine.

    There is for me something uncanny about the language of Blackwood and Mesle’s reading, something uncannily close to the story of my friendship with Naomi Schor, a passionate relationship that has nothing to do, in our case, as Jewish middle-class girls from New York, with social mobility; but a great deal to do with pettiness, or rather the “narrative force of small details.” This connection is more than intimate on several levels, not least because Naomi’s most important book is her 1987 Reading in Detail: Aesthetics and the Feminine, in which she magisterially links the detail to gender in a discourse quite different from that of the pettiness piece, but to the same point: “The detail does not occupy a conceptual space beyond the laws of sexual difference: the detail is gendered and doubly gendered as feminine.”

    I’ve been working for a ridiculously long time on a memoir about my friendships with three women who died in the first decade of the twenty-first century. One of the reasons for my embarrassing slowness has to do with figuring out really how to get at what happens in friendship, some friendships, and especially my friendship with Naomi. My Brilliant Friend illuminated my difficulty by its example; and ultimately, clarified by the brilliance of the pettiness essay, will give me a way out, a way to understand why this was the most formative friendship of my life, and finish the damn book, already.

    Detail of a detail of the cover of Reading in Detail.

      Summer Diary: Making friends, silver and gold, new and old

      Old-age friendships are slightly different from those made in the past, which consisted largely of sharing whatever happened to be going on. What happens to be going on for us now is waiting to die, which is of course a bond of a sort, but lacks the element of enjoyability necessary to friendship. In my current friendships I find that element not in our present circumstances but in excursions into each other’s pasts.

      Diana Athill first published these words about friendship in The Guardian in 2010 with the title “The Decision.” She was 93 at the time, and the decision refers to the reluctant acknowledgment that she would have to give up a house she loved, and move to a room (of her own, but just one room) in a home for the elderly. It’s not often that we have an autobiographical narrative by a woman of Athill’s age radiating unmistakable joie de vivre. I read the piece in the kind of shock only something new can produce, as an essay collected in Alive, Alive Oh! And Other Things That Matter (2016). I picked up the book by chance from a table in a bookstore this summer while visiting London, drawn in part by the striking portrait of its author on the cover.

      Athill326

      At 75, and already feeling old―a state Athill postponed fully embracing until her nineties–I suddenly saw how much my idea of life in one’s later years has been shaped by my friend Carolyn Heilbrun’s ambivalent stance toward aging. On the one hand, in The Last Gift of Time Carolyn described the singular beauty of feeling life ending―the bittersweet sense of doing some things for the last time in one’s sixties, the joys of being free of the burdens of conventional femininity. But on the other, that frame of mind was made possible only by the conviction that she did not want to advance much further into the life of old age. In fact Carolyn’s perspective on aging depended on the decision―a decision very different from Athill’s―to end her life at some point in her seventies, at 77, as it turned out.

      For more than a decade, I’ve lived with Carolyn’s decision to kill herself and its aftermath. I confess that I never fully believed her many unambiguous declarations, published and private, of her intention to commit suicide. A rational suicide still seems implausible to me, and yet it happened. The suicide hangs over my seventies as both warning and invitation. Carolyn was right about so many things. Was she also right about this?

      After the cancer diagnosis that inaugurated my seventies, I assumed the disease would make the question moot. I liked the idea that the end of my life would be decided for me. Almost five years later it’s “alive, alive oh.” Much to my surprise (and everyone else’s) the cancer hasn’t yet killed me, so I suppose the question is back on the table–the decision―though it is not foremost in my mind.

      What captured my attention in Athill’s reflection on old age had to do with her vision of friendships formed in such late life, for Athill, specifically, in her nineties, with the women in the home. Since I’m not in my nineties, and that decade is not truly on my horizon, what seduced me was the notion she puts forward of “pastness” as forming the basis of friendships made in the perspective of death. I can’t help feeling that in revisiting my friendships in the book I hope to write, I am making “excursions” like those into our past, pasts that seem strangely present to memory. These friendships, of course, are not new ones, but as I return to them, they are renewed, brought back to life.

      If Carolyn’s vision of aging was radically different from Athill’s, Athill’s continued pleasure in the changes old age brings reminds me of Colette, another writer who a enjoyed life in all its variety, including growing old and, like Athill, never stopped writing. Colette died at 81 (young compared to Athill). The somewhat autobiographical novel Break of Day, published in her early 50s, carries the tone Athill often adopts when looking back on relationships, and a certain renunciation of sexual life. In the novel, Colette the narrator bids farewell to a man she was in love with, bidding him farewell with a mixture of pleasure, resignation, and nostalgia. He has left, but is he really gone? And is she really alone? It hardly matters. Unlike Athill who never married, Colette met her third husband while creating a novel about how to live after love. What matters is the way Colette conjures the departure of her current lover. She helps him leave by imagining his transformation into many things, but most important, a book still open (livre sans bornes ouvert) and whose boundless pages she might yet fill, an oasis, the novel’s final metaphor, a pause, perhaps a reprieve from an absolute ending.

      That is what I wish for my book: that I can still see my friends as they existed in the past, and now continuing with me in memory. They are shifting shape but they are not dead, as long as I write.

        Cancer Gadfly: Drinking the Big Pharma Kool-Aid.

        “Immunotherapy Drug Fails Lung Cancer Trial.”

        Naturally the headline caught my eye since I have been reading about lung cancer since my husband was diagnosed in 2009 and I, two years later. My husband is well and I am now in “partial remission.” Not a bad outcome. Immunotherapy was not around when we started chemotherapy, and I confess that I’ve been longing to try immunotherapy in the hopes of achieving what appears to be an elusive remission.

        I wrote about the advertising for Opdivo (the drug in question) almost two years ago, in an earlier post. I felt irritated by the hyperbolic promise of the language, invoking the amazing powers of your immune system to fight cancer–with the help of the new drug. Patient, heal thyself. The future you’ve dreamed of is now. One ad, a full page in color, featured a couple astride a cool looking motorcycle, poised for a long, adventurous life, against the bright blue background of a perfect sky. I probably envied their recovery.

        I don’t remember exactly where in the New York Times, my daily newspaper, the ad appeared, but I’m struck by the fact that this report of the drug’s failure occupies the first page of Business section, rather than the Science section, or indeed the News section itself, which recently featured a multi-paged narrative about the miracles performed by immunotherapy drugs.

        The Wall Street Journal also reports the trial’s failure as a business calamity. There is no attention to the fate of the patients, the individuals for whom the drug failed. Follow the money. Both articles focus on the drama of financial shock, shaky market shares, and rivalry with other drug companies–future sales figures of the drugs, not the future of the patients.

        Screen Shot 2016-08-09 at 4.41.50 PM
        In the Times the only mention of the 541 unfortunate humans in the clinical trial was to note that their tumors had not produced enough PD-L1 for the drug to work, as if they had failed the drug instead of the other way around. What did patients know about the trial as they entered it? In her “Living with Cancer” blog, Susan Gubar highlights the scandalous history of drug companies that do not report the outcome of failed trials, thus depriving patients of the opportunity to evaluate their chances.

        I kept hoping my oncologist would propose Opdivo for me. Last year, a friend began treatment for lung cancer with my oncologist, on my recommendation. She received standard chemotherapy, as I had. Then immunotherapy. I thought she was lucky to benefit from Opdivo. Both therapies failed. This brilliant, courageous woman was then given 6 months to live; she died within 6 weeks. Where is her story?

        My friend was not alone. The gap between the promotion of drugs and the life of patients is just starting to emerge. Here is just one sad outcome.

        If I hadn’t already stopped asking for the drug, I would now. How many patients in future drug trials will know what happened to the 541 who came before them before they decide to enter a new trial?

        Be careful what you wish for.

          Summer Diary: Father’s Day

          Today I found myself purging the files from the research I did for What They Saved. I’ve been wanting to do this for a while, but today I felt I absolutely had to. Only when I had jettisoned fifty pounds of paper, did I realize that today was the 25th anniversary of my father’s funeral. He died on Bloomsday in 1989 and was buried on Father’s Day.

          Among the folders filled with the research I had done for the memoir, my quest to uncover the history of his side of the family, was a cache of quotations, handwritten, typed, and glued from newspaper clippings, mostly on index 3X5 cards, that he had saved, and that I then saved, too.

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          For the longest time I could not figure out what purpose these cards had served for him. Were they quotations for his law briefs? Presumably those from Oliver Wendell Holmes were. Interesting vocabulary: Serendipity “created by Horace Walpole circa 1754 after he had read a nice fairy tale called “Three Princes of Serendip.” Sentiments that caught his fancy? Finally, I saw that quite a few of the cards were dated from 1946 and 1947, when my father had returned to finish his B.A. at City College. He had been practicing as a lawyer for over a decade, as one could do in those days, minus the B.A. But clearly he wanted the degree, and studied for it successfully so that he was elected to Phi Beta Kappa (he saved the clipping from that honor, too).

          If the index cards helped him study for exams, the wisdom they distilled seemed to carry him through life, since they all express the kind of positive, self-help thinking he always tried to convince me would make me a less miserable person (they did not succeed, but he never stopped trying).

          From How Never to Be Tired (1944): “Mental work cannot cause fatigue.” From A College Text Book of Hygiene. “The prevention of worry reduces itself, first to realizing that at its base is fear of failure or disaster…”

          What can I say? I was a slow learner.

          There’s a black and white snapshot of my father sitting at a card table on the rooftop of the building my parents lived in, with what looks like paper work spread out in front of him. The snapshot is not dated. But because it was included with the packet of index cards, I’m guessing that my father had gone to the roof to study–he loved the sun–and get away from his wife and daughters. He looks very happy.

          I miss him, bromides and all.

            Cancer Gadfly: Still Alive, or The Mortifications of Survival

            Readers of the London Review of Books will know that Jenny Diski has been writing diary posts about her cancer for over a year. In “Who’ll be last?” (November 19, 2015), Diski reflects on the embarrassing situation of those of us who announce our forthcoming death from cancer, yet still remain alive to write about it. She cites the case of Clive James who “after telling the world five years ago that he had untreatable leukaemia, has had to apologise for not yet being dead.” And offers a quiz show challenge: “Which writer lived the longest and wrote the most columns and/or books after the announcement?” On the other hand, if cancer “were a race, the first man home…would be Oliver Sacks (announced 19 February―died 30 August.” In this race, you win by dying, quickly.

            Diski is tough on the subject of cancer. To say she is unsentimental about her illness is to understate the wicked violence of her prose. She delivers details about the treatments she endures in a tone that wards off sympathy, while shocking the reader into the realpolitik of surviving with cancer thanks to innovations in modern medicine.

            I enjoy reading these irascible manifestos, hard to know what to call the genre–rant, screed, complaint―writing that bears witness to the kind of suffering we’d all prefer to avoid, honest testimony, without cheerful sanitizing, more rare than you’d think. (Susan Guar’s Memoir of a Debunked Woman, Jochlann Lain’s Malignant, and Miriam Engelberg’s Cancer Made me a Shallower Person―sadly, Engelberg died the year her memoir appeared–are brilliant exceptions to the rule.)

            Most of all, what I liked about this installment is the limning of the embarrassment of remaining alive, outliving the statistics, off the charts, fill in the cliché.

            This embarrassment weighs heavily on my mind because soon I will have another scan. I’m not sure which number this is, somewhere in the double digits. Except for the diagnostic scan in December 2011, and a serious scare one year into treatment that led to a biopsy, the scans have been consistently “good.” More recently, since I’m on chemo break, the oncologist calls them “stable.” As an acquaintance in treatment now for her lung cancer likes to say, “stable is the new good.”

            Each time, though, I’m convinced the scan will be bad, and when it’s not I feel I should apologize to my friends for having worried them. If dying is winning, I’m still losing, but it’s not the kind of race where you really want to finish first.

              Losing Friends

              I don’t love Facebook, even though I’ve used it, abjectly, to promote my last book.

              Beyond the obvious embarrassment of self-exposure, the most anxiety-producing feature of the Facebook model is the business of friending (apologies to Webster’s Third). Why friend someone you don’t know? Why friend someone you know but don’t consider a friend? Why―and this is the issue tormenting me today―friend a colleague you know only slightly? With a few exceptions, I do not include colleagues and students in my Facebook world. I try to keep a firewall between “Facebook me” and “school me,” especially when posting about my cancer and the politics of that illness.

              Yesterday, over lunch, I learned that Jerry Watts, a colleague of ours, had died earlier in the week. I had missed the notice since I rarely check our overburdened university email. The shock stayed with me all day. I’m sure my seminar was very strange. Jerry Watts, a man I barely knew but always liked (not Facebook like), in part because he had supported me in some contentious departmental debates a few years ago, was dead. You can read about him…on Facebook. He was a distinguished scholar of African American political thought.

              I doubt seriously Jerry noticed I had not clicked the accept button, when I received his friend request a while ago. If he had, I doubt it would have affected his sunny, generous nature.

              Today, I belatedly friended Jerry Watts and “liked” the posts about him. I will miss his lovely presence. We all will.

                Cancer Gadfly: Limbo

                After a series of stable scans, and almost 4 years of monthly chemo, last week my cancer treatment was abruptly cancelled. No doctors, nurses, blood draws, or infusions, not, at least until the next scan, 3 months from now, delivers its verdict. Since my cancer belongs to the “treatable but incurable” variety, I’ll never be fully done with the scan-to-scan existence. Not even my eminent oncologist can say for sure whether my nodules (term of art) are dead or just playing dead. It’s cancer limbo.

                Normally, limbo doesn’t have much to recommend it. My beloved Webster’s Third (circa1966) spells it out.

                LimboyellowBut nothing about cancer is normal, and stable, they say, is the new good. Once you accept that, limbo starts to seem appealing. If I were the sort of person who could be happy, I would be. Believe me, I’m trying. In the meantime, however, I note that the timing of my new status couldn’t be better, under the wire for inscription in the Book of Life, and for writing my own book.

                Shana Tova

                  “Roberta liked Flavia… they shared a tennis court” (apologies to Virginia Woolf)

                  I can’t have been the only viewer of the U.S. Open women’s final, who teared up at the sight of the two competitors, Roberta and Flavia, embracing each other lovingly at the end of  the match. (For a point of comparison, think Djokovic/Federer, or rather, don’t.) Or Venus embracing Serena after their match, and whispering “I’m happy for you,” after her own defeat, just as her brow furrowed while watching the upset of the semi-final that deprived her sister of the trophy she longed for.

                  What Woolf in A Room of One’s Own thought her imaginary female novelist of the future could show was friendship between women undamaged by jealousy: “Is she taller than I am? How does she do her hair?” Woolf wished for something more complicated, and I think the Italian pair would have made her happy.

                  I’ve been writing about friendship for a while, trying to, and aware of how often I have been a bad friend. It’s not so much jealousy around appearance, though I feel prepared to kill any woman with bone straight hair. It’s more a matter of envy―envy of certain accomplishments, or rewards for those accomplishments. It’s long been a cliché that women are not trained to compete, by which I mean compete without suffering after losing. What men do, or supposedly men do. I didn’t stay up late enough to know whether after the final match, Djokovic and Federer embraced, cradled each other’s heads, murmured gentle words of friendship and support.

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                  Ladies Doubles, Provincetown, circa 1970. My silver-haired mother far left; her (much taller) usual partner, second from right.

                  I grew up watching my mother play tennis. She was an avid amateur, competitive and talented. She often played with a particular (much taller) woman friend, whom she continued to like and admire, regardless of the score, though of course they kept score. I rarely give her credit but I have to admit that on the tennis court, if nowhere else, she could compete with joy.

                  In the days of our consciousness-raising group and seventies feminism we used to talk about the “economy of scarcity,” how if one woman had or did X, that meant the other could not. We tried. Everybody’s different is what we were supposed to learn in kindergarten, and relearn in feminism. It’s not an easy lesson to hold on to, to practice, especially in academia, where it so often feels that winner takes all. With the image of Roberta and Flavia before me, I want to learn to love losing.

                  And then there’s Elena Ferrante’s Lila and Lenu, but that’s for another post.