Leah Vande Berg & Nick Trujillo (2008). Cancer and Death: A Love Story in Two Voices. Cresskill, New Jersey: Hampton Press, 163 pages, ISBN 978-1-57232-851-5, $23.95

Abstract: Cancer and Death is a co-constructed narrative of autoethnography that explores the experiences of a couple as one of them slowly dies from cancer. The book focuses on narrative voices and emotions rather than getting bogged down in discussions of theory and methodology regarding the broader sociological implications of health care and cancer that some accounts employ. Without the academic frame, is this book a scholarly text or a literary memoir? The intent of this account is health communication in the social sciences, although the question arises: Is such a text actually science or is it literary memoir? I open the debate in this review.

Cancer and Death is published under Hampton Press' Health Communication series, edited by Gary KREPS. Other books in the series also concern the cancer experience, public health, aging, and alcoholism, often with a personal, or what SHOSTAK (1996) termed a "private sociology," method. This chronicle of spouses experiencing ovarian cancer together, with one partner passing away and the other left to go on, never labels itself autoethnography, yet it is. Cancer and Death follows Carolyn ELLIS' (1995) Final Negotiations as a sociological event represented in narrative (see MAINES, 1993 for more on this) on the experiences of failing health, the medical field, hospitalization, and the death of a loved one (see also ELLIS, 1993 and ELLIS, 2003) that is of interest to those who research qualitative health care and health communications. Although co-authored, this account is how TRUJILLO has found the strength to continue after the love of his life leaves his world. It is an evocative account of the inevitable: At some point in all our lives, we will lose our loved ones, naturally or by accidents like car crashes, or by disease. How we deal with the aftermath is a universal concern. [1]

ELLIS (2004) advocates the co-constructed narrative as one method of approaching autoethnography. In several of her essays (ELLIS, 2008 collects many of them) and anthology introductions co-edited with Art BOCHNER (e.g., ELLIS & BOCHNER, 1996, 2002), conversations are recorded and then transcribed (see also JONES, 2004)—this becomes the body of the text. The reader is given the opportunity to have a glimpse of their domestic life and "overhear" a private, intimate discussion between two academics and domestic partners talking about theory, other works of literature, their feelings, their insights, and where they think qualitative research—usually autoethnography—is going. In Cancer and Death, each chapter is a bi-furcated text (DERRIDA, 1990.The voices are not initially identified but it does not take [ ] long to figure out who is talking. ELLIS (2004) explains that the co-constructed narrative is

"a way to study relationships that would more closely reflect on how we live them in every day life […] to show couples engaged in the details of daily living, coping and trying to make sense of the ambiguities and contradictions of being partnered […] relationships between people are jointly authored, incomplete, and historically situated […] One of the actions we take in relationships is to assign significance and meaning to rather vague experiences and events in an attempt to bring order to the unit." (p.71) [2]

VANDE BERG and TRUJILLO make a bold move to make sense of the cancer experience by writing down how each experiences this (sociological) event; the power in this narrative is that the two authors know VANDE BERG is going to die, and readers know that they are reading the words of someone who has passed but who wanted to put her thoughts and lived experience down not only for therapeutic reasons for her husband and herself, but for research purposes. [3]

Cancer and Death employs two methods related to autoethnography: the life story (DENZIN, 1989) and systematic sociological introspection and emotional recall (ELLIS, 1991; ELLIS & BOCHNER, 2000). [4]

"the subject-as-author is given an authority overt the life that is written about. After all, it is his or her life. This means the author has an authority in the text that is given by the very conventions that structure the writing or telling." (p.42) [5]

VANDE BERG and TRUILLJO recall events of their respective childhoods, relationships with parents and siblings, high-school experiences, first sexual encounters, first loves and first marriages, and living the academic life in communications departments at various institutes. Their voices reveal differences in upbringing: VANDE BERG came from a small Midwestern American town i in in the United States and grew up in a religious household. She notes, "I was little Miss Goody Two-Shoes in high school. I did not drink or smoke cigarettes and drugs were unheard of back then" (p.8). VANDE BERG writes, "My parents had to approve of all the boys I dated" (p.9) which of course caused her to rebel and fall in love with Barry, a "bad boy" (he was caught drinking beer) from the rival town that she had to sneak out and meet. "I became really angry with my parents, and we had marathon fights about Barry" (p.9). [6]

TRUJILLO was "a typical teenage boy in high school" (p.10).. Whereas VANDE BERG was studious and a salutatorian, TRUJILLO played sports and partied: "While Leah inhaled books in Sioux Center, I inhaled marijuana in Las Vegas" (p.10). His parents were relaxed, easy-going, jazz-loving beatniks, the polar opposite of VANDE BERG's strict Christian parents. The time was the late 1960s; thus these two lives are situated within the context of American history during an era of radical change and consciousness shifting. "It was an evolutionary time," VANDE BERG contends. "I wore mini-skirts and an army fatigue jacket and marched down Main Street with protesters" (p.13). [7]

ELLIS (1995) explains, in the reflection and analysis section of Final Negotiations, the resistance she encountered from peer reviewers when writing her ground-breaking paper on "systematic sociological introspection" (ELLIS, 1991), a method that later incorporated "emotional recall" (ELLIS & BOCHNER, 2000) into the jargon. ELLIS (1991, 1995) argues that introspection can be a scientific approach to the study of emotions. Cancer and Death shares much in common with Final Negotiations: Both are accounts of scholars transforming their personal experiences of pain and loss into sociological narratives. Both books address the hodgepodge of emotions involved with illness, health care, and hospitalization: from fear to anger to disillusion to acceptance, where "telling concrete stories and comparing the stories represent the communicative practices" (ELLIS, 1995, p.331). [8]

There are other voices at work: letters e-mails, and quotations from family, friends, and students are interspersed between the chapters. The effect is similar to WILDER's Our Town (1938): disembodied voices announcing themselves on a dark stage and providing additional narrative data and details, an outside perspective on what the two main voices are experiencing.

"My husband Paul and I met Nick when he taught at Purdue. We ran a Kinko's where he had his teaching materials printed […] Who could have known then that Nick and I would lose our spouses to cancer?" (VANDE BERG & TRUJILLO, p.33)

"By the time I got to the hospital, it was probably after eleven at night. Nick was by Leah's bedside, and he told her I was there. She stirred a little, but didn't say anything. At this point, she was heavily medicated on morphine and coughing up a lot of blood and tissue." (VANDE BERG & TRUJILLO, pp.115-116) [9]

The additional voices add perspective to the narrative; instead of hearing it from the coauthors, we see their experience, and pain, through the eyes of others. [10]

Private sociology, SHOSTAK (1996) states, "has me persuaded that you and I, not incidentally, enjoy more of our lives, if we make greater effort to share ourselves with others" (p.1). This is not to say that TRUJILLO and VANDE BERG has enjoyed writing this account—indeed, the words on the page reveal a great deal of pain, yet they also suggest a light the end of the dark tunnel of experience. At the end of the account, TRUJILLO engages sociological introspection by reflecting on his feelings and his efforts to get something positive out of this experience, and find in a place of inner peace. He dates other women, he travels around the world, playing his guitar at Jim Morrison's grave in Paris; he also finds a renewed interest in teaching after a long sabbatical; he finds the strength and conviction to live without Leah. [11]

The core sociological value is TRUJILLO addressing a man's mental health issues after such loss. One woman he meets and talks to, who lost her husband three years ago, is offended that TRUILLO, after two months, is out in the world meeting new people, not holed up in a dark room and weeping for a couple years. TRUILLO is in pain, and he admits it, but he refuses to give in and allow sadness and depression take over.. "When Leah was diagnosed with cancer, I wasn't sure I could handle what I would go through," he admits (p.162), and then finds himself in a place where

"I am more joyous. I really do live my life now according to the credo 'Life is Short.' I do not take anything for granted. I spend more time doing things I really enjoy. I am more outgoing and sociable, and my circle of friends has expanded. I smile more than I used to, and I have discovered that most people smile back at me." (p.162) [12]

He could have gone the other way and become bitter, lonely, angry, and introverted. His outlook on life in general has not only changed, but his outlook on academics has as well: "When you watch your wife die before your eyes, other stuff becomes far less important. I used to take office politics way too seriously, but I have no interest in writing pissy memos ever again" (p.162). [13]

Lacking the framework of theory, literature review, and discussion of method, a question is posed: Is work such as Cancer and Death social science or literary memoir? Is it truly scholarly research or simply autobiography? ELLIS (1995) struggled with these questions as colleagues admonished her that her story "should be presented as an experience without all the sociological trappings" (p.303). In the interview conducted by JONES (2004), ELLIS elaborates on this:

"I will never forget the review I received from Norman DENZIN, who said, 'This person is schizophrenic. She makes the case for a humanities approach and then turns it against herself by trying to claim that this is social science.' Those sentences … totally turned me around. Up to that point I had been arguing, 'I'm a scientist, I'm a methodologist' and knocking on the mainstream sociology door, saying, 'Please let me into your club.' After this review, I changed my tune to, 'It really doesn't matter what I'm called or what the research is called, it matters what the work does.' I turned away from knocking on the door and asking to be let in to asking, 'Who do I want to speak to? Who wants to listen? And who wants to speak back?' " (JONES, 2004, para.51) [14]

This debate has been tossed back and forth in the social sciences since the "I' has been introduced into ethnographic texts. TRUJILLO never places the book into the context of applied theory, and as noted, never labels it as "autoethnography," yet readers, such as ELLIS and I, view it as such. Perhaps TRUJILLO's concern reflects ELLIS' (1995) dilemma when she struggled with writing "a traditional social-science ending that interpreted what readers should take away from my story about relationship negotiations […] I feared that in the process of doing this, narrative details would then be viewed as grist for the analytic mill" (pp.328-329). [15]

I must admit that I found myself disappointed that the book had no traditional academic components; I wanted to know how TRUJILLO contextualizes his narrative within recent autoethnographic literature. On the other hand, I know that had TRUJILLO followed a traditional format, this would have reduced the evocative impact of the story. TRUILLO states he is no longer interested in petty academic politics and he seems unconcerned with following expected research norms—in this case, he has authority over the shape and meaning of his life story, as per DENZIN (1989). [16]

Art BOCHNER (in JONES, 2004) states, "Narrative inquiry and autoethnography … pulls away from that obsession with science" (para.46). This does not, however, mean that autoethnographic methods are not science. My position is that Cancer and Death is indeed social science and is, naturally, an autoethnographic text, albeit lacking the label. The narrative conforms to the criteria ELLIS (2004) sets forth: it is an evocative text; the reader feels empathy and recognizes the experience as communal and shared; it examines the self in the culture of cancer experience; it engages introspection and reflection on human emotion. In the past, BOCHER notes, "emotions were something scientists rarely looked at" (JONES, 2004, para.49). They are now. [17]

Ellis, Carolyn (1991). Sociological introspection and emotional experience. Symbolic Interaction, 14, 23-50.

Ellis, Carolyn (1993). "There are survivors": Telling a story of sudden death. Sociological Quarterly, 34, 711-730.

Ellis, Carolyn (1995). Final negotiations. Philadelphia: Temple University Press.

Ellis, Carolyn (2003). Grave tending: With mom at the cemetery. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 4(2), Art. 28, http://nbnresolving.de/urn:nbn:de:0114-fqs0302285.

Ellis, Carolyn (2008). Revision: Autoethnographic reflections on life and work. Walnut Creek, CA: Left Coast Press.

Ellis, Carolyn & Bochner, Art P. (Eds.) (1996). Composing ethnography: Alternative forms of qualitative writing. Walnut Creek, CA: AltaMira.

Ellis, Carolyn & Bochner, Art P. (2000). Autoethnography, personal narrative, reflexivity: Researcher as subject. In Norman K. Denzin & Yvonna S. Lincoln (Eds), Handbook of qualitative research (3rd ed., pp.733-768). Thousand Oaks: Sage.

Ellis, Carolyn & Bochner, Art P. (Eds.) (2002). Ethnographically speaking. Walnut Creek, CA: AltaMira.

Jones, Holman Stacy (2004). Building connections in qualitative research. Carolyn Ellis and Art Bochner in conversation with Stacy Holman Jones. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 5(3), Art. 28, http://nbnresolving.de/urn:nbn:de:0114-fqs0403284.

Maines, David R. (1993). Narrative/s moment and sociology's phenomena: Toward a narrative sociology. Sociological Quarterly, 34(1), 17-38.

Michael HEMMINGSON's work has appeared in Life Writing, Creative Approaches to Research, Journal of Sex Research, Journal for the Study of Sports and Athletes in Education, Fourth Genre, and Qualitative Research Journal. Some of his books include Zona Norte (Cambridge Scholars, 2008), Autoethnographies: Sex and Death and Symbolic Interaction in the Eighth Moment of Qualitative Inquiry (Borgo Press, 2009), and The Anthropology of Pornography (SUNY Press, 2010). He is currently editing an anthology, First Person Sociology (due out in 2010 from McFarland). In FQS Michael HEMMINGSON has written a review to "Pursuing Hollywood: Seduction, Obsession, Dread" (by Nathaniel KOHN 2006; http://nbn-resolving.de/urn:nbn:de:0114-fqs080399).

University of California, San Diego
9700 Gilman Drive
PMB 241
La Jolla, CA 92093-5010
USA

Hemmingson, Michael (2009). Review: Leah Vande Berg & Nick Trujillo (2008). Cancer and Death: A Love Story in Two Voices [17 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 10(3), Art. 3, http://nbn-resolving.de/urn:nbn:de:0114-fqs090333.

Forum Qualitative Sozialforschung / Forum: Qualitative Social Research (FQS)

ISSN 1438-5627

Creative Commons Attribution 4.0 International License