She stands in front of me, a royal purple bathrobe falls elegantly off one shoulder of her slender frame. Her lips glimmer with the sheer tint of Vaseline. I perch next to her on the countertop, my legs dangling over the edge as she readies herself for the day. I watch as she gazes intently at her own reflection in the mirror. Cheekbones sit perfectly next to deep blue eyes. Eyes, I’ve heard are exactly like mine. Cheekbones I’m told, “You got from your motha.”
She slowly lathers lotion, first on her arms and then her legs. Carefully she places one hand on the counter to maintain her balance. As she leans closer to the mirror, her legs quiver beneath her. The muscle definition in her legs is nearly gone. Her left leg, significantly smaller than her right, is stiff and rigid. As she moves away from me towards the door, her hand remains situated on the counter. She slowly shuffles along the length of the bathroom. Her left leg drags slightly behind her. She makes it to the door and lets out a sigh of relief. This will be just one small feat at the beginning of yet another long day.
My mother, Denise Keller, is cool. Why is she cool, you ask? Well aside from her ability to bleed both sass and compassion at the same time, she is always authentically herself. She wakes up every morning, no matter how she feels that day and dresses in trendy shirts, with yoga pants, and color-coordinated jewelry sets because she will show up that day. She will keep doing what makes her happy and she couldn’t care less if you’re not interested. She’s smart, funny and self-deprecating. She also happens to have Multiple Sclerosis (MS).
Multiple Sclerosis (MS) is a neurological disorder that is diagnosed in approximately 1 million Americans, and nearly 2.3 million people worldwide (Wallin, M. et al., 2019; “National MS Society,” 2019). Symptoms of MS include fatigue, walking, and balance issues, numbness in hands and feet, depression, and a variety of other physical impairments. Although in recent years attempts have been made to understand the disease and find a remedy, MS to this day remains incurable.
Multiple Sclerosis quite literally means “multiple scars” (Eeltink & Duffy, 2004, p. 283), which is precisely what this disease has created for my mother and our family. My mother’s prognosis is what physicians call relapsing-remitting MS, meaning that the intensity and nature of symptoms is constantly fluctuating. Hoops (2008) suggests that the uncertainty and unexpected nature of this disease brings even more stress into a person’s life than consistent “chronic, ongoing symptoms” (p. 84). Since MS is a disease of improbability (Hoops, 2008), those with MS must inevitably live with a sense of incertitude.
I have often accused MS of dimming my mother’s feisty Bronx attitude. It’s the same disease I’ve blamed for keeping her from dancing her heart out and being the woman and mother she’s wanted to be at times. When she became a prisoner in her own body, my mother also became prisoner to the stories told by and about her. MS marked my mother as aberrant. I saw how people communicated and treated her differently as her body became less able. I saw how chronic illness and disability permeated her perception of herself and my perception of her. I also saw how we became hostage to similar disabling narratives of illness and disability.
As such, I understand the importance of loved ones creating and perpetuating what I call regenerative narratives. Regenerating narratives can be used as a means of healing, but can also become “a vehicle of resistance and emancipation from cultural and familial identity scripts that govern body and identity” (Spry, 2001, p. 87). In this paper, I provide a narrative account of my relationship with my mother and her chronic illness, in order to show how I regenerate the degenerative and disabling narratives that mothers with disabilities and chronic illness are often subjected to. I/we use storytelling to create our own way out; to regenerate.
Illness Narratives
“No, but mom, really, just come outside with us. It’s going to be an epic game of hide and seek!” I squeal from the doorframe of her bedroom.
“I can’t sweetheart,” she sighs. Her body is limp and dark shadows hover under her normally vibrant eyes.
“Mooommm, why are you so boring? You’re like such a mom. Just come on. Tina and Kim’s moms are coming. I don’t understand?” My persistence pushes her to a halt.
“Alyse, I wish I could. I really do. I am sorry.” The conversation is over. She rolls over to the other side of her bed, signaling me to leave. I watch as she sinks into the covers, where she’ll retire for the rest of the day.
Most evenings her bedroom remains lit by the iridescent glow of her television. Every once and awhile the voices of Pat Sajak or Diane Sawyer echo filling both the living room and her bedroom. It’s often that we are watching the same shows on separate sides of the house. Somehow it feels like we are sharing something.
***
My mother was diagnosed with MS before I was born. My whole life I’ve watched the disease take narrative control of my family, my mother, and our relationship. My mother’s illness is an integral part of my understanding of her and our relationship to one another. Illness narratives, such as those posed by Frank (1995) and Kleinman (1988), focus on how disease is perceived, enacted, and responded to by self and others. Illness narratives can contribute to the creation of my mother’s identity, “and become inseparable from her life history” (Frank, 1995). The most pervasive illness narratives are grand medical narratives of health and illness, which construct “normal ways of being sick” (Kleinman, 1988, p. 5) and expectations about how to behave when ill. These are the types of stories that perpetuate stereotypes and limited understandings of illness and disability.
People and families subsequently living with chronic illnesses often lose narrative authority because external voices are telling their story, or crafting problematic depictions of their lived experiences. As they lose their own voice, they begin to live in the stories told for them. Unavoidably then, the meanings communicated by these narratives can “amplify or dampen symptoms, exaggerate disability, impede or facilitate treatment,” and ultimately encourage the actualization of said degenerating narratives (Kleinman, 1988; Cardillo, 2012).
As a daughter of maternal multiple sclerosis, I’ve often found it difficult to find refuge in stories similar to my family’s because they are either scarce or don’t exist. Through revisiting old journals, memories, and lived experiences which recount my mother and her illness, I look towards a new understanding of her, her illness, and our narrative. In many ways “rather than passively accept the inevitability of my mother’s disease, I attempt to write and tell this narrative which enables me to both examine the manner in which I constitute a collective identity with my mother, and in this way reframe our own possibilities as mother and daughter” (Aleman & Helfrich, 2010, p. 9).
I hope to tell her/our narrative “in its full measure” (Freeman, 2014, p. 54). In doing so I first aim to tell our story in all its dimensions, from tragic and horrifying to comedic and redemptive. Secondly, I want the stories to be about her and her world, to preserve her in her own unique integrity. Thirdly, I want to tell our story in its otherness and its essential humanness. And last, I want to tell hers/our story in order for her to truly “live on the page” (Freeman, 2014) and open up the truth of her existence as I see it.
Motherhood & Disability
Mothers with disabilities experience an especially complicated relationship towards their illness/disability and mothering. Extant literature on disabled motherhood illustrates a prevalent view that disabled women should not become mothers (Kocher, 1994; Malacrida, 2009). Many women are “trapped in a discourse of disability that makes it extremely difficult to be looked upon and treated as a mother since the mainstream discourse of disability does not blend easily with the mainstream discourse of motherhood” (Grue & Lareum, 2002, p. 672). This is because “the ideal mother in western culture is positioned as a woman who mothers naturally, who is always and immediately present to care for her baby, and who does this mothering selflessly and seamlessly” (Malacrida, 2009, p. 99-100). As such, typical constructions and discourses of motherhood promulgate a specific way of being and “doing mother” that frequently neglect to include the voices, concerns, and experiences of mothers with disabilities (Kocher, 1994; Malacrida, 2009).
When women with physical disabilities choose to become mothers, they are typically scrutinized or examined much more meticulously than their able-bodied counterparts (Grue & Lareum, 2002, p. 674). Mothers with disabilities feel an exceeding amount of pressure to prove their motherhood to the general public and even loved ones (Grue & Lareum, 2002). They often feel pressure to overcompensate for their disability by being “supermoms” that can do everything, while still having a disability. Studies find that mothers with disabilities “often go to great lengths to ‘present’ themselves and their children as managing ‘normally’” (Thomas, 1997, p. 622), in order to prove they are capable.
Mothers with disabilities also “can have a more complicated relationship to ideal motherhood because they are perceived either as asexual, and inappropriate to the role of motherhood or conversely are seen as at-risk” and in need of nurturing themselves (Malacrida, 2009, p. 99). Motherhood is associated with ideas of maternal femininity, nurturing and authority. These qualifications stand in antithesis to the way our society frames women with disabilities.
Therefore, mothers with disabilities are often forced to work against these social stereotypes. Moreover, mothers with disabilities due to chronic illness have even reported that medical professionals were noticeably indifferent toward discussing motherhood with them or often failed to understand the implications of illness or disability on their role as mothers (Thorne, 1990). This underscores the marginalization and stigmatization that mothers with illness/disabilities can experience while trying to navigate their parental role.
***
The morning announcements begin, during which most of my Spanish class pays no attention. I am seated behind Anthony and in front of Dana. Anthony turns around in his seat to allow his usual first-period flirtation to ensue. In comparison to most of his pre-pubescent competition, Anthony has the body of a Greek God. He knows it.
He leans over the back of his chair, inching close enough so I can smell the sweet scent of his Abercrombie and Fitch cologne.
“So Alyse, I saw your mom this morning. She was waddlin’ through the lobby.”
“Oh yeah?” I inquire. I play dumb. I act as if I couldn’t possibly know what he’s talking about. Of course, I do. My mother works at the school. The short walk from the parking lot to her office is frequently too exhausting for her. The strain she puts on her legs during the short walk, fatigues her, resulting in an awkward gait.
Anthony responds, “Yeah, and let me tell you, your mom waddles like she took a real hard poundin’ from your dad last night! Atta boy.” The entire class erupts in laughter. I sit for a moment, wide-eyed. I want to scream. I want to slap him and wipe the charmingly vindictive smirk right off his face. But I say nothing. I simply smile and let out a forced giggle. I allow everyone to laugh. Laugh at my mother’s expense.
***
Each time I return to my parent’s home is a marker of time passed and maturity gained. It is also an indicator of the toll MS takes on my mother’s body. She/we change each time.
The scents of oregano and fresh basil swirl throughout the house. I know without being in the kitchen that my mother is preparing pasta fagioli, a household staple.
Over the buzz of the television set, I hear her yell out, “Alyse! I need you!”
I rush to the kitchen to find her scooting along the counter toward the family room, located adjacent to the kitchen.
“Lysy, I need to sit down. My legs are giving out. Can you help me over to the couch?”
I situate myself next to her, our hips touch, as she places her body weight on my arms. We are halfway to the family room as her legs start to give way. She stands in one spot, struggling to lift her left leg off the ground. Her frustration mounts, as I finally proclaim, “Ma, I’m picking you up.” Before she has time to respond, I grab her waist and say, “All right girl, let’s do this. Hold around my shoulders and I’ll heave.”
She places her hands tightly around my neck as I pull her close, lift her up and rotate a couple of feet as we plop onto the couch. After I catch my breath, we remain seated next to one another in silence. Her head tilts back and I rest my head on her shoulder. I pull my legs tightly against my body and her legs dangle ever so slightly over the side of the couch.
She places her hand on mine and says, “Thank you.”
Seconds go by as we sit in each other’s appreciation and exhaustion when she says “But next time, little missy, I’d really love if you didn’t refer to picking up your mother as “heaving,” thank you very much!”
***
Over the buzz of the television set, I cry uncontrollably. I lie across her chest and sink into her. My whole body shakes. My broken heart keeps beating.
“I’m sorry, Mom. I’m not a human right now.”
We lie on her bed, 20/20 playing in the background.
She softly replies, “Don’t be sorry. I’m sorry. I wish, as your mother, I could do more for you. I’ll just sit here and listen as long as you need, Jane-Alyse-Jane.”
I look up at her, a smirk creeps across my face, “I’m Alyse, Mom,” correcting her commonplace confusion about which daughter I am. At least I’m not the ever exhausting Alyse-Jane-Alyse-Jane, as my mother so fondly calls my sister.
“Right, honey. I know”
“Okay,” I muffle into her chest.
Minutes go by and she finally breathes a long sigh and whispers, “Well, I know why you’re this upset. You’re this upset because … ,” she hesitates, “… because he touched you, isn’t it?”
I look up at her, and we both erupt in laughter. I was waiting for this, waiting for some “zinger” from her.
Composing myself I respond, “Well yes, he certainly did touch me. We dated, mother.”
Still laughing and covering her mouth in embarrassment she lets out an, “Oh no! Why did I say that?”
I giggle, “I really don’t know, Mom. But I think it’s perfect. I loved it.”
“Well good. At least there’s that.”
“Yes,” I reply, “at least there’s that.”
We continue to lie there, my head rising and falling on her chest with each breath, and I think to myself, “Frankly, I hope we continue laughing, but with each other, always.”
The Regenerative Narrative
Through the shifting tenses and demarcation of sections, I construct a narrative that resonates with the disjointed and chaotic illness experience. Lopate (1994) states that “how the world comes at another person, the irritations, jubilations, aches and pains, humorous flashes—these are the classic building materials of the personal essay” (p. xxviii). They don’t fit together seamlessly. They are often fragmented. As such, my choice to create disjointed narratives also aligns with the chaotic and often confusing relationship one might have to illness and disability.
Situated against the backdrop of disintegrating master narratives, personal narrative, or as Lopate states, personal essay, responds to the wreckage, the reclaiming and the reflexivity of postmodern time (Bochner, 1997). I seek to reframe our own possibilities, as mother and daughter. Through this narrative, I question, “What is my relationship, as a body, to other persons who are also bodies? How does our shared corporeality affect who we are, not only to each other but more specifically for each other?” (Frank, 1995). I do not dismiss her MS since it is a part of her identity and our shared relationship, but rather focus on what Frank calls the quest narrative, in which one “meets suffering head-on and accepts illness” (Frank, 1995, p. 115).
Freeman (2014) recalls challenges of writing about his mother’s illness since they often were “like a lamentation or depending on the moment an outright rant” (p. 49). I find that often I allow others to narrate for my mother, or even in narrating my experiences with her I use a degenerative framework which, like degenerative diseases, the experiences, symptoms, and pain contribute to the deterioration of the person. I “want to (re)tell her story in a different way than I have” (Freeman, 2014, p. 49), in a way that takes into consideration her humanness.
The degenerative narrative is the story of a victim. Similar to Frank’s (1995) chaos narrative, it is “the anti-narrative of time without sequence, telling without mediation and speaking without being fully able to reflect on oneself” (p. 98). I realize that “finding a way to tell her story—which is, in part, mine as well—that truly does justice to her life” (Freeman, 2014, p. 49) is difficult. As such, I yearn to reframe and reconstruct her narrative as a “tragicomedy, one that is emblematic of nothing less than life itself” (Freeman, 2014, p. 49). I move to include both the voice of tragedy and comedy in my narratives of my mother because that more accurately reflects our lived experience.
Although I cannot completely halt the continuation of the degenerative narratives that influence her life, “I can change the way I dialogically engage [with] those stories” (Spry, 2001, 87). According to Cardillo (2010), “the way that loved ones strategically communicate toward and about those with chronic illnesses can often help the patient integrate their difference into a strong and positive sense of self” (p. 527). As such, this paper is just the beginning of my attempt to illustrate my mother and regenerate my experiences with her and her illness. Ultimately, I want my mother to “live on the page” (Freeman, 2014). I want our experience as mother/daughter to live and grow on the page. I seek to bring her to life in all her multi-dimensionality, in all her humanness.
Through the continual effort to regenerate the narrative of my relationship with my mother, I move away from the degenerative narrative and mother a counter regenerative narrative. I perceive the regenerative narrative as a potentially empowering and healing tool for both co-creators in a relationship. I know now that strength in the face of illness doesn’t mean the suppression of feelings. It doesn’t mean that I/we need to hide my frustration with this disease. It means sharing and embracing. By educating others outside her lived experience about the influence narratives of pity, embarrassment, and shame can have on those with illnesses, I look to resist and regenerate. Resist and regenerate for my mother and for others.
***
It’s now been six months since my mother was released from the nursing facility. Six months of recalibration and re-understanding how to navigate my mother’s (typically) pristinely decorated home. MS is mechanical and messy. My parents’ house has become a repository of machines, assistive devices, and pills. Living with MS has become sloppy, leaky and trying. It’s been six months and sometimes things still aren’t easy, but we must always adapt.
“Alyse,” she quietly whispers. “I need to go.”
“Nooooo,” I groan. “Can’t you hold it? It’s…”
I turn over to check my phone, “…three in the morning, Mom!”
“No, honey. I need to go now,” she calmly replies.
I turn over to face her. I’m lying next to her, a guest in her quarters. My twin size mattress nestled against her hospital-style bed. Through the slivers of my eyes, I see her lying next to me, patient and still. She looks so small, nearly subsumed by her large bed with its rigid handrails.
Being testy, I say, “You still sure you need to go?”
“Alyse,” she firmly responds.
“Okay, okay.” I flop my lifeless body out of bed and shuffle over to her side. My eyelids struggle to lift, swollen shut, I murmur, “You gotta move now, Mom. Work with me here.”
Her eyes are also sealed shut, as she lifts the upper half of her body, and attempts to swing her legs around to the side of the bed. She ends up collapsing back on the bed again.
“Try once more,” I utter, exhausted.
This time my mother draws her upper body up and over, by leaning on the handrail attached to the right side of her bed. I pull her legs, tense and crooked, out from under the covers and place them on the ground. Her left leg involuntarily shakes from fatigue and her right leg refuses to bend at all. After I use my body weight to coax her right leg to move, I decide to put both my feet on top of hers, firmly placing them on the ground. She puts her hands around my neck and finally lifts herself off the bed. I swing her around in one swift movement, plopping her down into her wheelchair.
“Oh, Linda would not be pleased with that transition,” my mother mumbles. Linda is her physical therapist, a woman who is constantly coaching my mother to make sure her technique is on point, to avoid hurting herself or us.
I reply, “Well, let’s not tell Linda. We’ll work on it later. Let’s just get you to the bathroom.”
Transitions are an art form. A dance where we are totally in sync some days, and others days, stepping on each other’s feet…literally.
We make our way to the bathroom. Just like near minutes before, I have to transition her out of the wheelchair and on to the toilet. I grab her by her waist, she holds onto my shoulders, as we lift and twist, slowly lowering her onto the toilet. As she settles onto the toilet I collapse on the floor next to her, closing my eyes for just a moment whispering,
“Let me know when you’re done.”
It’s not until my mother calmly whispers “Alyse, Alyse” that we both realize we fell asleep again–she on the toilet and I on the ground.
“I mean we could just sleep here too,” we laugh at the absurdity of our situation.
I get up off the ground and we dance our way back to bed.
References
Alemán, M. W., & Helfrich, K. W. (2010). Inheriting the narratives of dementia: a collaborative tale of a daughter and mother. Journal of Family Communication, 10(1), 7-23.
Bochner, A. P. (1997). It’s about time: Narrative and the divided self. Qualitative Inquiry, 3(4), 418-438.
Cardillo, L. W. (2010). Empowering narratives: Making sense of the experience of growing up with chronic illness or disability. Western Journal of Communication, 74(5), 525-546.
Eeltink, C., & Duffy, M. (2004). Restorying the illness experience in multiple sclerosis. The Family Journal, 12(3), 282-286.
Frank, A. (1995). The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press.
Freeman, M. (2014). From absence to presence: Finding mother, ever again. In J. Wyatt and T. Adams (Eds.), On (writing) families: Autoethnographies of presence, absence, love, and loss, pp. 49-55.
Grue, L., & Lærum, K. T. (2002). ‘Doing motherhood’: Some experiences of mothers with physical disabilities. Disability & Society, 17, 671-683.
Hoops, J. F. (2008). “I have MS. I am not MS.”: Disequilibrium, discordance, Detachment, dichotomy, and diminishment in the construction of a multiple sclerosis identity. Kaleidoscope, 7, 83-108.
Lopate, P. (1994). “Introduction” to The art of the personal essay, xxiii-xiv.
Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. Basic Books.
Kocher, M. (1994). Mothers with disabilities. Sexuality and Disability, 12, 127-133.
Malacrida, C. (2009). Performing motherhood in a disablist world: Dilemmas of motherhood, femininity and disability. International Journal of Qualitative Studies in Education, 22(1), 99-117.
Patti, C. J. (2012). Split Shadows Myths of a Lost Father and Son. Qualitative Inquiry, 18(2), 153-161.
Stone, L. (1997). “Introduction: Recalled to Life.” In L. Stone (Ed.), Close to the bone, xi-xxviii
Spry, T. (2001). Performing autoethnography: An embodied methodological praxis. Qualitative inquiry, 7(6), 706-732.
Thomas, C. (1997). The baby and the bath water: Disabled women and motherhood in social
context, Sociology of Health & Illness, 19, 622–643.
Thorne, S. E. (1990). Mothers with chronic illness: A predicament of social construction. Health Care for Women International, 11, 209-221.
Wallin, M. T., Culpepper, W. J., Campbell, J. D., Nelson, L. M., Langer-Gould, A., Marrie, R. A., … & Buka, S. L. (2019). The prevalence of MS in the United States: A population-based estimate using health claims data. Neurology, 92(10).
Wendell, S. (2001). Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia, 16(4), 17-33.
- JourMS - 