In session below, Rachel Hadas discusses the ways her habit of writing regularly and her persistence in asking for help has kept her from despair in the face of her husband’s prolonged neurodegenerative illness. She reflects on the publication of her collection of poems The Ache of Appetite in 2010, followed by her memoir Strange Relation, a Memoir of Marriage, Dementia, and Poetry in 2011. Besides offering a chronicle of her husband’s illness, the memoir quotes many poems, some familiar and some refreshingly new, that can sustain the spirit in times of great stress. Where science gives the diagnosis, poetry provides the strength to listen and to acknowledge intensity of feelings. Hadas also discusses her participation in a recent conference on Writing and the Art of Medicine at the University of Iowa Carver College of Medicine, where she further explores the intersections between literature and medicine. (This interview was conducted by Joyce Wilson via email for The Poetry Porch in May 2011.) .
JW: You write that your poetry has helped you a great deal through your husband’s illness. Not only did your poems record signs that you later decoded as indicators of what was happening, but they also helped you define your feelings as they began to surface. Can you say more about this process?
RH: Yes, my poems helped me to see what those feelings were as I expressed them. Often I felt lonely, angry, puzzled, or conflicted; a poem can crystallize such a feeling (a feeling other people may not want to hear), giving clear expression to a murky emotional mix, and in the process making it less murky. “Push Me Pull You” might be one example, “The Boat” another.
JW: I sense that when you write your poems, you are inspired by a particular experience that you want to formalize in verse; in the way Elizabeth Bishop seems driven to capture the impact of the moment. Am I on the right track here, and is it this approach to writing that has helped you with George’s illness?
RH: I think this is generally right, but it is not always “a particular experience” that I aim to capture. In the case of George’s illness, the experience has gone on for many years. Poetry can distill a period of time, as with “The Boat,” “The Hotel,” “The Beam,” “Vertical and Horizontal,” “The Stack,” and others.* Some specific experiences that only happened once seemed to go better into prose; for example, the visit to the doctor recounted in “Into the Murky World,” or the interview in “Around the Table.” Admittedly, these categories can blur; prose can crystallize into poetry and poems can be unpacked into prose. Many of the essays I have been writing over the past year began their lives as poems but burst those generic confines.
JW: I particularly like the chapter “Similes,” the way you describe how these word patterns serve as good connectors between reality and the imagination. A chapter like this not only conveys your situation through comparisons of unlike things (husband to hamster, marriage to prison) but also presents the narrative of this period of your life as a teachable moment. Do you find that some chapters more than others have worked particularly well, and for what reasons?
RH: I think the “Similes” chapter works well for many people because it actually applies similes to life. I try to show both how some similes are helpful and how at least one was not.
JW: What was the format of the conference in Iowa? Did you find that your contributions were instructive in the uniting of the worlds of medicine and literature? Is the medical profession turning more and more to the patient’s narrative as a useful tool?
RH: The Iowa conference featured three readers (I was one; the others were Chris Offutt and Paul Harding) and also many concurrent panel presentations, most eliciting lively input from the audience, on various topics pertaining to patients’ narratives, medical writing and revision, relieving stress . . . a whole gamut of themes. My talk—I read from the “Similes” and “Tithonus” chapters—seemed to be closely attended to; I was happy there were several questions from doctors in the audience. Yes, patient narrative is indeed seen as a crucial tool, but the literature/medicine movement is much broader (and vaguer) than that; doctors’ “narrative competence” (in Rita Charon’s phrase) is key, and it can take different forms. The narrative medicine movement is both dynamic and amorphous, a combination of traits I noticed back in 2007 when I attended the first meeting of the Iowa conference.
JW: Diane Ackerman has recently published a book One Hundred Names for Love: a Stroke, a Marriage, and the Language of Healing, about learning to recommunicate with her husband, the author Paul West, after his stroke. A naturalist, she describes a number of approaches to engage with him through verbal processes, making up ditties, exercises with a speech therapist, helping him reconnect with words by his taking dictation. A reviewer in The New York Times calls theirs “the most enviable of marriages, a ‘decades-long duet.’”** I realize that West’s aphasia may be completely unlike George’s dementia. Can you talk about the role of words and vocabulary in dealing with these illnesses?
RH: Unfortunately, whereas aphasia resulting from stroke is sometimes reversible, at least to some degree and given hard work, aphasia resulting from a neurodegenerative process is a lot more intractable. I do trace the diminution of George’s speech in Chapter 8, and on page 161 I reproduce a page of his writing from 2008, juxtaposed with letters he wrote me in the 1980s and early 1990s. His difficulty with language was bad enough in late 2004 that he placed in the first percentile on some neuropsych tests. Having said that, there are some techniques that sometimes work, like pointing to the image of the kind of popsicle he wants on an ice cream truck. His language is vanishingly sparse and getting sparser all the time. By the way, One Hundred Names for Love and Strange Relation were reviewed together by Terri Apter in the Times Literary Supplement.***
JW: There are families who are brought together by illness and those who are split apart. I found my own family to be among the latter, in which it took years for us to talk about my sister’s cancer and then her husband’s death from a brain tumor. Yet I’ve observed other families who work together cooking meals with the hope that vitamins might stimulate a cure, or managing time by planning schedules together, even organizing outings that might help them coordinate some kind of group effort to ward off the despair. Do you have any ideas about strategies to keep those confronted with these illnesses from feeling less alone?
RH: Your point about families is so right. For those who feel isolated by an illness in the family, I’d say seek help—and help from peer support groups may well be more useful than help from a professional counselor, unless you find the right one. For example, Dr. Barry Jacobs at www.emotionalsurvival.com specializes in family therapy for families where illness exists. The organization Well Spouse (www.wellspouse.org) is a wonderful resource for spousal caregivers—I have been active in this nonprofit since 2006. Other groups are illness-specific. As Pauline Boss writes in her very useful study Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss, it is important to seek out people who will function as a family for you.
JW: Watching the movie Temple Grandin about the woman with autism, who was also a professor and renowned author, and who made great contributions to the field of animal science, I was struck by the isolation of the subject’s mother, played by Julia Ormand. You saw a mother who never got back what most of us thrive on in mothering: no eye contact in acknowledgement of communication, understanding, or gratitude. The mother had to carry on with the knowledge that her daughter could not love or return love in the conventional way, that she sought the slings of a machine, not the arms of those close to her, when she needed to be held, that in fact she hated to be touched. Do you find parallels in the progress of your relationship with George?
RH: Interesting question. While George was still living at home, his emotional coldness or prevailing apathy probably had much in common with some autistic behaviors; I had to care for him and take responsibility for him with few or no thank yous or nonverbal signs of affection. This apathy is a frequent and distressing symptom of the frontotemporal dementias.
JW: Do you find that the assistance you are getting is sufficient? Please relate your experiences with support groups that have helped you.
RH: I have made many friends who understand my situation and who have been helpful in all kinds of ways, some practical, some more in the way of understanding and companionship. I co-facilitate a Well Spouse support group once a month, and for many months I also co-facilitated an in-house support group at the residence where George lived for almost three years. I came to think of that place as a hothouse of all kinds of human attachments. Unfortunately, George no longer lives there.
JW: And you are bringing out a publication of George’s compositions—?
RH: Yes. A CD of George’s music is now out from Albany Records (see www.rachelhadas.com and look under the heading The Music of George Edwards). In addition, his book of essays, Collected Essays on Modern and Classical Music, was published by Scarecrow Press in 2008.
* The poems listed are quoted in full within the chapters of the memoir and some of them also appear in Hadas’s collection The Ache of Appetite (Copper Beech Press, 2010).
** Verghese, Abraham, “Terms of Endearment,” NYT Book Review, April 17, 2011, 14.
*** Apter, Terri, “Struck,” Times Literary Supplement, July 22, 2011, 10. [ED. NOTE: In the TLS review, Apter emphasizes how Ackerman narrates the process of using words to stimulate the patient and lead him back to health while Hadas’s book describes how words help to hold a life together.]
In Memoriam: George Edwards died on October 23, 2011.