When applying for academic jobs in the humanities, you are sometimes required to submit a statement of research interests. In this account, I reflect on one research statement that I wrote not too long after earning my Ph.D. While my focus in this account is on my interest in the livable life and my mom’s experiences with pancreatic cancer, I could have also reflected on my plans for researching and writing about the virtues, particularly the virtue of truth-telling. Since writing this statement in 2007, I’ve spent a lot of time developing my understanding of troublemaking, but I’ve just started working on truth-telling. Is this intellectual history project one part of my shift towards truth-telling?
Document: Statement of Research Interests
In a Statement of Research Interests, crafted for at least one academic job application in 2007, I wrote about my plans for continuing to research the Livable Life:
I will explore the question of dignity and the livable life for women diagnosed with cancer. Drawing upon theoretical texts used in my dissertation and new research on women’s cancer memoirs and dis/ability studies, this research will be used to support my production of a documentary video on my mother’s diagnosis and her experiences of living with pancreatic cancer.
When my mom was diagnosed with pancreatic cancer in the fall of 2005, a split happened in my life: before diagnosis/after diagnosis. Up until the moment that my dad called me and said, “Sara, your mom has cancer,” I couldn’t imagine a world in which my mom was sick, let alone dying or dead. After her diagnosis, surgery and then first round of chemo, I began to think more about cancer and how it strips those who continue to live with cancer (at that point, my mom had beaten the odds and was in remission) of much of their dignity and their access to a livable life. As I tried to make sense of her experiences, I felt a need to cope through research and deep reflection on some of the larger social issues connected to cancer. I closely read Susan Sontag’s Illness as Metaphor and Audre Lorde’s The Cancer Journals, plus a few other books and articles that I can’t remember. I worked on shifting my perspective to think more deeply about illness (in general) and cancer (more specifically). I talked with my mom about doing another digital video, a follow-up to my 2003 documentary dedicated to her, that documented her life-with-cancer.
My research projects all fizzled. Why? I’m not sure why I stopped exploring the livable life (I’m still interested in it, especially as a contrast to a virtue ethics grounded in the good life), but I know why my digital video about my mom never happened: it wasn’t the right way for me to deal with her illness. She didn’t want me to document the slow deterioration of her body (but never her spirit) and I didn’t want to have a camera between us for any of the time that she had left. Later, when her cancer came back (in the beginning of 2008, I think?) and the chemo started to really take its toll, I couldn’t imagine filming her as she described the different, yet equally horrific, ways in which chemo and cancer were destroying her quality of life. Now, years after she died, when occasionally I’m able to dream about or remember her as not being sick, I’m grateful that I never took footage of her when she was sick. I don’t need or want those visual reminders. I have enough memories to haunt me.
My early efforts, not too long after she was diagnosed, were all about me trying to make sense of and learning to live with my mom’s new reality as dying. And as well intentioned as I was, they weren’t really about granting dignity to her. She was an extremely private person and making visible her painful experiences of learning to live with cancer through a documentary wasn’t the way she would want to claim (or be granted) dignity. I must have realized that, because I never interviewed her and never shot any video of her when she was sick.
A few years after she died, I taught a graduate course on queering ethics. For one of the weeks, I assigned introduction from Drucilla Cornell’s book, Between Women and Generations: Legacies of Dignity. In the first paragraph, she describes the purpose of her book:
After a long illness, which offered no possibility of recovery other than slow degeneration, my mother decided to take her own life on August 25, 1998. She was seventy-two years old. In the last ten years of her life, she had endured Parkinson’s disease, breast cancer, and a series of lung illnesses. She would not want me to tell you much about her suffering or her physical decay. My mother had read a number of books written by daughters and sons about their mother’s death and she hated them all. She made it clear that if I wrote a book that portrayed her with the disrespect she found in those books, she would haunt me for the rest of my life and pull me into an early grave. So no more will be said about my mother’s bodily condition. On the day she died, she left me committed to the promise to write a book, dedicated to her, that would bear witness to the dignity of her death and that her bridge class would be able to understand.
I thought about these lines for a long time. I still think about them. And I’m still working on how best to bear witness to the dignity of my mom’s suffering with, and then dying from, pancreatic cancer. Is it possible? And, how does bearing witness to the dignity of her death fit in with my need to bear witness to the dignity of her life? I’m not sure how to answer these questions, but one thing I have come to realize is the importance of shifting away from trying to tell my mom’s story, or using it as material for my academic research on “the livable life.” Her story can inspire and provoke my own thoughts on living and dying, but it is her story, and not mine to tell. So, I shifted towards making sense of my experiences living and grieving beside her.
In the midst of her final months, when it was too painful to even consider, I avoided critically reflecting on her illness. Instead, I opted for distraction by creating and feverishly (and joyfully) writing in my blog, TROUBLE. My mom used to tell me, “Sara, you need to write. You’re a great writer!” This writing wasn’t research; it was ideas, inspired by years of researching, that I had been thinking about, but had never had time to write down or craft into essays.
When she did die, I started writing on my blog about how my experiences grieving for her as she lay dying for months (she was in hospice for almost a year), called into question Judith Butler’s assertion that grief is “one of the most important resources from which we must take our bearing and find our way” (30). Then, during summer break, I started working on an essay about living and grieving beside 3 Judiths—Judith Butler (my academic muse), Judith Puotinen (my mom) and Rosemary Judith Puotinen (my daughter who was born not too long after she was diagnosed). I posted my progress on the essay, as I wrote it, on my blog. Here’s part of my description:
Throughout the past four years all three Judiths have been a central part of my life. They have literally been beside me, and beside each other, as I have struggled to make sense of and endure grief and impending loss. In addition to the literal ways in which each of them has been beside me, these three Judiths speak to three different roles that I have negotiated simultaneously but not easily or always successfully: the daughter, the scholar, and the mother. Negotiating these different, sometimes conflicting and frequently exhausting roles has been a constant challenge that manifested itself in some unique and troubling ways. At times my roles seemed to complement each other. Being a mother comforted me as I prepared myself for the impending loss of my own mother. Being a daughter losing a mother to cancer opened up my scholarship to new ways of thinking and feeling about women’s narratives of and theorizing about cancer and illness. Being a scholar provided me with a useful outlet for exploring and reflecting on losing a mother to terminal illness.
At other times, these roles came into conflict and made me doubt my own ability to properly inhabit any of them. How can I be a good enough daughter to my mother and a good enough mother to my daughter at the same time? How can I laugh with my daughter while my mom is lying in a bed, 7 hours away, struggling to breathe and to eat? How can I critically and abstractly think about the limits and possibilities of grief and coming undone, when I am in the midst of the process myself? For the past four years, the roles of daughter, mother and scholar have resided beside each other. Just like my living and grieving beside the three Judiths, they are not reducible to each other, yet their existence in relation to each other has shaped my experiences with grief and loss. In losing my mother, I am not just a daughter; I am a mother raising her own daughter. In raising a daughter, I am not just a mother; I am daughter without a mother. In reading, writing and teaching about Butler’s notions of grief and the livable life, I am not just a scholar; I am a mother and a daughter struggling to make sense of grief and the livable life.