“When we say cancer to [my daughter], I am already dead and gone” (Patient 2)
Modern healthcare aims to practice patient-centered care, but this goal is difficult to achieve unless we work to humanize the patient experience by embracing the idea that all of us, at some point in our lives, become patients. As a result, we must face the undeniable reality of mortality with the understanding that it is in our best interest to support qualitative research endeavors such as poetic narrative that push for further inclusion of patients’ perspectives. For decades, women’s health and other areas of healthcare have become more open to the act and art of storytelling as a way to shorten the gap between the objectivity we associate with the scientific method and the subjectivity that is the human condition (Charon, 2006). While widely accepted as a form of therapeutic intervention, poetry and poetic narrative remain on the periphery when it comes to having a metaphorical “seat” at the social sciences “research table” (Penderghast, 2009). This piece moves this effort forward by using poetic narrative to challenge the epistemological bounds of what can and cannot be included as research on/about women’s health and mother studies.
The need to engage in the process of crafting a poetic narrative emerged while I was conducting a larger research project over a time span of 14 months when I interviewed 23 ovarian and uterine cancer patients who were receiving treatment for either stage III or stage IV ovarian or uterine cancer at a major cancer research institute in the U.S. When we spoke, the 17 who were mothers and/or grandmothers shared stories about their relationships with their young children, adult children, or grandchildren. A thematic analysis of 29 hours of interview transcript data revealed a pattern of communication about mothering that suggested participants looked to their roles as mothers and grandmothers as a way to make sense of their role as a cancer patient. Therefore, the way in which women performed “cancer patient” was informed by their perceptions of motherhood and their (in)ability to perform “mother” in ways they deemed valuable. This finding provides insight into how some women conceptualize their lived experience with cancer and chemotherapy, suggesting our social and individual conceptions of motherhood can act as a guide for further understanding the difficult nature of coping with advanced stage cancer. For example, Patient 6 explained her distress related to worrying about how her adult children and grandchildren would react to her hair loss during chemotherapy. Anticipating their reactions to her changing aesthetic guided her decision to purchase a wig. She explains:
“I don’t know how painful or uncomfortable wearing a wig is. I don’t know if it hurts…I mean, it’s like what I said to the kids last night. I need hair. I am not a beautiful woman. I have not… [starts crying] …I can’t look phenomenal and have a shaved head. That’s not me. It’s not going to work, so either I have a wig, or I have some kind of scarf that is going to at least make me feel like I look less like a freak. I don’t want my kids to go, ‘Oh my God, Mom.’ I don’t want them to see my head…I don’t know how resilient kids are. I don’t know” (Patient 6).
The overlapping themes of angst, sacrifice, love, and negotiation led me to reflect on the role of “mother-patient” and the emotional labor represented in performing such a role. Emotional labor requires a person(s) to manage their emotions by inducing or suppressing feelings and the outward appearance of experiencing certain feelings for the sake of sustaining an outward countenance that produces a more pleasant state of mind for others (Hochschild, 1983). While the concept of emotional labor is typically applied to work in the service industry, the concept is particularly appropriate when thinking through the emotional regulations society expects mothers to enact and embody, as well as the self-perpetrated standards of emotional regulation mothers enact and, at times, impose on other mothers (Dean, Churchill & Ruppanner, 2021).
Emotional labor resonated throughout the interview data. Women communicated distress related to anticipating and accommodating loved one’s reactions to their illness and their changing appearance. Patient 4, for example, was a mother of young children. She said one of her main responsibilities was to maintain a sense of normalcy for herself and her children. This is a difficult aim when considering the intensity of chemotherapy and the frequent loss of autonomy with which many patients struggle. She explains:
“[Chemotherapy] got harder. In my [most recent] chemotherapy, I lost all my eyelashes…When I lost my eyelashes, that’s when I thought, I’m not going to do this anymore. One time I had to dress my daughter for school. She didn’t know because I always have fake eyelashes, and I forgot. She said, ‘Mommy, what’s wrong with you?’ I said I did it on purpose, but this [signaled] a big change. It was a big, big difference. She even told me, ‘You scare me.’ It was hard” (Patient 4).
Patient 4 did not complete chemotherapy. The side effects of chemotherapy can burden the norms already established in certain mother-child relationships to a point where some might question the worth of the treatment. The changes in one’s everyday life are uninvited, and the weight of managing one’s feelings related to these changes exemplifies emotional labor in its most extreme sense.
Patient 1 communicated connections between her quality-of-life and her relationship with her grandson. Before her cancer treatment, they had a daily routine where he visited her after school. It brought her happiness and gave them stability. She discussed the change:
“My grandson is suffering. It’s giving him a hard time. He’s not used to seeing me sick. He took a different route home from school yesterday [starts crying]. He’s very close to us. I told him this morning, everything’s fine and I’m strong. Nothing’s going to happen [husband and adult daughter start crying]” (Patient 1).
These stories from mother-patients are a poignant reflection of how emotionally difficult it is to live with an advanced stage cancer diagnosis and how it can, unfortunately, happen to anyone. Almost everyone who reads this piece will have some maternal figure in their lives who is going through/has been through a cancer diagnosis and subsequent treatment. And yet, the unsettling likelihood of disease does not bring American society as close to emphasizing with those who endure cancer as it should. In fact, the sobering likelihood of a cancer diagnosis might be a reason why we continue to keep this chapter of the human condition at arm’s length. With the intention of promoting empathy and further humanizing the cancer experience, I reflected on how I might best represent the voices of the women who shared their insight? How do I “show and tell” what it means to mother during chemotherapy, and how might I do this in a way that is respectful and rigorous? Poetic narrative is a mode of inquiry that demands vulnerability from the author/researcher and results in a product that is ripe for both critique and celebration, which is why I chose to use it in this piece.
The decision to use poetic narrative is twofold. First, it is both a method and an outcome that fosters creativity and connectivity between the narrative and its readers. Second, it contends with the dominant social science discourse that champions the clinical and, instead, focuses on the relational. Faulkner (2013) frames narrative poetic inquiry as a form uniquely situated to re-present liminal spaces. I argue, the women who participated in the interviews that provided content and context for this poetic narrative experienced liminality because of the uncertain reality of advanced stage gynecologic cancer and the opaque nature of decision-making related to one’s performance of everyday life during end-of-life.
Written in the first-person, the mother’s voice in the piece is an assemblage of 17 voices, all of whom emphasized their roles as mother and patients, or mother-patients, as a primary factor affecting how they managed their emotions and the emotions of their children. Similar to the manner in which Zaner (2004) highlights the mixture of hope and vulnerability felt by patients with chronic illnesses, the poetic narrative in the next section introduces the reader to the mixture of emotions that flow throughout the mother-child relationship. In this piece, the mother’s tone expresses an entanglement of distress and strength, and hopefully evokes feelings of love, imbalance, duty, friendship, and uncertainty. Statements of tenderness are combined with fear and forthright assertions about the future because that is what was interpreted from the 17 mothers/grandmothers I later conceptualized as a collective.
***
To my darling daughter, from your dying mother
I will hold your hand through my disease.
I will help ease your uncertainty and suspicion,
Though I know you know I am not fine.
Not this time.
Not ever again.
I strategically dodge your questions
Because your angst
Consumes my confidence
At a faster rate than this tumor.
My darling daughter,
I lived a fruitful 38 years before meeting you.
Had I known the friendship we would foster,
I would have willed myself to create you sooner.
I assumed mothering came with hurdles.
I worried you might slow me down.
I expected you to damage my Helen of Troy aesthetic.
Instead, I grew stronger and more confident.
I became emboldened.
I wore red rather than pastels.
I sat in the front row, even when I arrived late because
I was worth the wait. You were worth the wait.
Now, we wait together for an event beyond our control.
My place now is within memories we are creating.
I cannot guide your future in the ways I wanted
Or in the ways you need.
What will become of you, my angel?
I worry. I wonder. I mother.
While the nurse speaks, you take my hand,
Showing you are capable of mothering your mother.
But you cannot meet my gaze.
You are frightened.
In this moment, what I already know to be true is confirmed.
My work as your mother is not done.
You still need me.
Our society insists cancer is a battle.
Resist this narrative. It is too partial.
I was drafted into this so-called war, and
When I forfeit the fight,
Do not see me as selfish.
Recognize the courage it takes to surrender.
Waiting to die emits a type of uncertainty
I cannot embrace to the degree a cancer patient should.
If only autonomy was a permanent right.
If only my tumor did not metastasize.
If only “healthy” was a stable trait, then
Perhaps self-reflection might come more easily?
When I’m gone, use my name as often as you can.
Imitate my best qualities.
Learn from the ones you dislike.
Do not forget me.
Do not forget the whole me.
Describe my professional drive.
Praise my devotion to our family.
Talk of my wit and sense of style.
Cancer is not a label for my legacy.
I deserve more.
All patients do.
Remember, I was young once.
I led a full life before this disease.
I have decades of stories I want repeated.
Keep me alive.
Though you won’t see me,
Talk to me anyway.
Though you won’t hear me,
Laugh with me anyway.
My role as your mother eclipses
My role as a cancer patient.
Your drive is your own, but your cravings came from me.
I will come find you long after you think I have left.
Wherever you are,
Awake or asleep,
I will be with you.
My firstborn. My favorite.
Though my strength was dismantled by disease,
I was tenacious.
Remember me as the scaffolding for your
Powerhouse persona.
We are women, my darling,
And we are resilient.
Maintain your presence.
Look me in the eyes.
Take comfort in knowing I am here for you, and
I will be here, in some way, always.
I will hold your hand through my disease.
***
The physical and emotional suffering that accompanies advanced-stage cancer is immense. This suffering flows throughout the family, impacting all meaningful relationships and disrupting relational norms that constitute a family’s structure. The women who participated in our interviews often “doubled down,” in their mother-work, performing additional emotional labor in the form of aesthetic sacrifices for the sake of their adult children. For example, a participant detested her wig, but wore it because her son wanted her to wear it. She explains:
“This morning, [my son] and my daughter-in-law drove me [to the clinic] so I had the wig on. If I took it off when he wasn’t there, my daughter-in-law would go back, saying, ‘your mother takes that wig off as soon as you’re not around.’ So, I waited until after I had my blood drawn…I’m like, ‘Okay I’m taking this off [laughs]. It has tiny combs that hit the back of my neck and dig into me” (Patient 12).
Another patient made a similar aesthetic sacrifice for her adult child, explaining she wore a wig because, “[my daughter] doesn’t want the grandkids to see me bald” (Patient 2). To make sense of her daughter’s reasoning, Patient 2 connected her daughter’s insistence about the wig with anger she suspects her daughter feels toward the likelihood of losing her mother. The physical discomfort and emotional pain both patients share represents the emotional labor of the mother-patient role that calls mothers to place themselves second to help guide their children’s reactions to serious life-changing events.
The act of mothering and the role of mother are viewed differently depending on one’s perceptions of motherhood. In fact, one’s view of motherhood and mothering may change daily. When measuring life satisfaction among parents, Faulkner (2013) suggests we measure it in individual moments of time, seconds even, rather than in weeks or years. She explains, “one lap around the block and you feel you have it. The next lap you regret having birthed a kid” (p. 142). Olen states, “the fact remains that the decision to become a mother almost always moves women several rungs down on both the economic and social ladders (p. 248)” and yet, many mothers position their roles as mother or grandmother before other roles our society deems more valuable, such as roles that yield financial gain or ones that foster social capital in the form of increased power relations.
Once the “mother” role is assumed, women inherit a socially constructed set of norms they are expected to enact. Social norms are coupled by various degrees of autonomy that enable us to choose how we enact certain aspects of our inherited/chosen/given roles. When one receives the devastating diagnosis of ovarian or uterine cancer, she inherits the role of a “feminine fighter,” which is often accompanied by warrior discourse and “ribbon culture” which employs cause-marketing to push consumption of goods that promote differently colored ribbons that associate a ribbon’s color with a certain cancer (King, 2006; Suilk, 2011).
The dichotomy between “looking good” or “looking feminine” or “womanly” while also “fighting” cancer places unrealistic and unattainable expectations on one’s ability to perform the role of “cancer patient” well. In a life-or-death situation, a “good fighter” would focus on survival and disregard concerns related to the aesthetic. And yet, we demand standards of “looking good” while “fighting.” Likewise, a “good mother,” is expected to rope herself to her child, assuming the responsibility of promoting healthy attachment with her child that will carry on throughout its life (Faulkner, 2013; Hays, 1996). In an excerpt from Patient 2, we see the pressure to perform “good” patient and “good” mother in her attempt to make sense of her adult daughter’s efforts. She explains:
“My daughter inherited some vanity I used to have, and I think she’s worried about me going out in public and not being confident about who I am… That’s probably why she bought me a wig…She’ll come to our house and say, ‘let’s take a girls afternoon and find your wig again.’ I’m going to say, ‘No, if you’re embarrassed by me and want to go someplace, I’ll put on a baseball cap…but I don’t want to invoke aggravation” (Patient 2).
Acknowledging the importance of the “mother-patient” role means we must recognize the burden of performing mother while performing patient. It is an embodied performance that is enacted during specific moments of cancer treatment as well as throughout the whole experience. This piece would be incomplete unless we pause to question why some women enact the “mother-patient” role. Why does the performance of “mother” inform the ways some women perform “cancer patient?” Why does mother eclipse patient? Perhaps there is more choice in enacting this role than assumed? Perhaps the mother-patient role is motivated, or more accurately, partially motivated, by a need to demonstrate some sense of autonomy through a familiar role as opposed to enacting the dreaded role of cancer patient? As a mother, I am confident in the possibility that, if faced with a cancer diagnosis, I might ground some or most of my coping with cancer treatment in my position as a mother. Though burdensome, perhaps performing “mother-patient” is a way to reassure one’s value in her family? If there is any truth to this questioning, then we must go back and review some of the excerpts featured earlier in this piece and acknowledge how some adult children’s less-than-empathetic reactions to their mother’s and grandmother’s changing appearance and failing health status led to angst rather than comfort. This suggests a gap our healthcare system can help fill through counseling and social work that approaches illness as a familial and relational experience rather than an individual-only experience. If the mother-patient role is grounded in coping, then this role and the way patients communicate about it warrants more attention because it can give healthcare providers and researchers more insight into a patient’s (in)ability to cope with her disease. Perhaps this piece may serve as a call to acknowledge, appreciate, and emphasize the emotional labor of the mother-patient, which could lead to a healthcare system that better meets the specific needs of specific patients.
***
For three years, I nurtured the idea of writing about the emotional hardships mother-patients communicated while enduring gynecologic cancer. Because I am not a cancer patient, the ethics of interpretation and representation are complicated, which is why poetic narrative is the appropriate genre for navigating such a sensitive landscape. The creative nature of a poetic approach invites readers into an intimate space of understanding (Penderghast, Leggo & Sameshima, 2009). As a result, the ethos of a more traditional, social scientific approach is challenged. Generating highly qualitative research such as the poetic narrative shared in this piece is a serious responsibility that will hopefully be employed more frequently among women’s health researchers who are attempting to promote a deeper understanding of the patient experience during chemotherapy.
It is crucial that we pay more attention to the ways women communicate about the roles they deem important so we can better treat and meet their needs. For some, the role related to their careers might guide how they enact “patient.” For others, the role of spouse or partner or another social role in one’s community might rank highest in importance. For patients who perceive their role as a mother as inextricably linked to their cancer journey, we must engage in dialogue about their mother-work and the additional emotional labor that comes with performing mother while performing patient. In so doing, we might derive more insight about the patient’s wants and needs and, as a result, place her uniqueness closer to the center of her healthcare. Then, from this understanding, scholars may use poetic narrative as way to show and tell a more complete and perhaps more complicated story about living while dying.
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