Multiple Sclerosis (MS) is a disease that encompasses much more than medical discourse can offer. It outlines symptoms, understands emotional problems as psychological, and, frequently, is more about the doctor and the field then it is about the patient’s lived social, political, and personal experiences: “Doctors often prefer to deal with diseases that they can cure rather than spend time on what some perceive as hopeless cases . . . They may be unprepared emotionally to cope with either the patient’s problems or with their own feelings of inadequacy” (Burnfield and Burnfield 1193).
The “truths” I am forced to accept from medical language: My mom is a case; I may become a case; we can only cope with emotions. I do not accept these “truths.”
We make many assumptions about what it feels like to live with MS because of the limitations of this medical discourse. For example, the deterioration of the myelin sheath doesn’t communicate what it feels like to lose control of one’s bladder unexpectedly or to be unable to wear high heels anymore. In other words, individuals living with MS, like my mother, are forced to inhabit the world as if they are not social and political beings. This is what my paper attempts to address and give language to, the emotional experiences of a personally disabling disease as social and political. Therefore, I denaturalize notions of shame while I denaturalize assumptions about MS. In the experiences I outline in this paper, shame is a social construct, constructed to politically position a subject against itself (Ahmed 103). Moreover, in Blush: Faces of Shame, Elspeth Probyn states that shame “makes the social natural in the deepest sense of the word . . . it is felt—and widely it seems, on the skin, in the blush, in the covering of the face—and it organizes particular social relations” (34). Subsequently, my mother chooses to conceal her illness as much as she can. She hides her MS shamefully because being seen by others means she is her symptoms, and nothing more. That is to say that popular notions of shame do not account for her social exclusion as a political instance, such as not being able to wear high heels, and therefore, losing a connection to social femininity.
Additionally, while MS affects many individuals, I focus only on woman’s experiences here, because I’m a woman at risk and only women in my family have been diagnosed with MS. Furthermore, growing up with my mother and grandmother (both women with MS) has provided me with experiences necessary to give words to, so as to support critical notions of MS and the shame often felt with it.
At 18, I moved out of my mom’s house, and out of Buffalo, NY. Despite the “normal” anxieties and fears an 18-year-old might feel about going to college away from home, my experience was even more nerve-wracking. Because of whatever medical reason, my mother’s Neurologist suggested that my mom begin a two-year low-dose chemotherapy treatment for her MS. Her first treatment was during my first week at college. Despite her comment that “everything was going to be okay,” it felt like I abandoned her when she really needed me. I couldn’t talk to anyone about it because when I tried, friends and teachers assumed she had cancer, tried to pity me, or tell me they knew how I felt. How could anyone know how I felt when I wasn’t even sure of what I felt?
While emotion studies are extremely valuable, it is not often committed to a non-fiction narrative. Critical emotional discourse, similar to medical discourse, is inadequate in describing the shameful experiences of MS. In other words, emotion studies can challenge the common epistemic binary of reason versus emotion by being more inclusive of narrative genres. Though this is not my central purpose, it is an important element of why this theoretical exploration matters. For my purpose then, I look at what MS is through the experiences of a few women (mostly centered on my mother and me), the politics of shame (i.e. how shame functions), and how we can reappropriate shame as not just a “bad” emotion, only causing harm.
Invisible Visible Symptoms
Medical discourse defines Multiple Sclerosis as a disease that attacks the central nervous system (National Multiple Sclerosis Society). The body, essentially, attacks itself, creating these scars on the spine, on the myelin sheath, that produce a variety of symptoms depending on the severity. MS fosters a wide range of symptoms and is also fairly unpredictable. People with MS can, for example, abruptly go blind (permanently or temporarily), as well as show symptoms for years before a diagnosis (Vickers). What is crucial about MS, though, is that symptoms are both visible and invisible; some individuals are paralyzed while others only experience extreme fatigue and an acute sensitivity to heat. Numbness, further, is one of the most common invisible symptoms of MS. In the spring 2012 subscription of Momentum, Elinor Nauen describes it as
Bees crawling under the skin, lightning bolts, a subway running under the feet, walking on marbles, wearing three pairs of socks or skintight gloves—these are some of the ways that people with MS have described their symptoms of numbness and tingling. And no matter how they describe them, no one finds them pleasant. (30)
During my childhood, my mother’s disease was very much hidden from my eyes. Her numbness was a “tingling” sensation like I got when my arm fell asleep. Simple pins and needles. As a little girl afraid of ants, let alone bees and lightning, “tingling” was subtle, tolerable. Most of the time I was safe in knowing my mother wasn’t in extreme pain, which also meant I wouldn’t be in pain if I developed MS. Since I was young, it has been a battle of subduing medical language, softening the blow of language like “deteriorating myelin sheath,” so as not to fear and feel shame for a genetic disease passed down from my grandmother to my mother, and maybe, eventually, to me.
My fear of MS leads to a social assumption that it is shameful to have a disease like MS. Since such emotional constructs are repeated over and over, especially in personal interactions between my mom and me, they take on an element of contagion (Ahmed 91). My mom’s fear makes me afraid, her shame makes me feel like I need to hide something; that is, her act of hiding the pain from me as a child makes me want to hide that which is already buried even more. So, the point is, there is much more passed down with MS than the disease itself. Cultural assumptions about what fear and shame are and what they do are passed down, therefore, limiting my mother’s and my understanding of what we can do to reappropriate this need to hide away shamefully.
Furthermore, some individuals, like my mother, have the option to hide their disease. My mother isn’t confined to a wheelchair; she has no leg brace; her symptoms are primarily invisible. Nancy Mairs, on the other hand, in Carnal Acts recounts her experiences of this progressive disease with significant markers: First, she started to limp, but she could still wear high heels. Then she had to wear a leg brace, a social marker, which meant the end of high heels. Finally, she lost most of her mobility and was confined to a wheelchair, another social marker. So while certain signifiers, like a wheelchair or a leg brace, bluntly mark a body, I want to argue that, because of the feelings of shame they conjure up, fatigue, numbness, and sensitivity to heat do as well, despite not always being so obvious.
Heat sensitivity is like a pseudo-symptom. It makes other symptoms, like tingling worse; it exacerbates the symptoms you already have. It makes your symptoms, at least to me, more noticeable. If I am, say, with a group a people outside and start to feel sensitive to the heat it makes me feel inadequate, because I can’t do what I used to be able to do. You look fine and nobody understands. People think you are lazy. (Ingrasci)
So despite a physical marker, like a leg brace, my mother expresses the concept of being marked as a shamed body. That is to say, social judgments about being lazy can be critically translated into having a body to be ashamed of. In “Shame,” Jennifer Biddle outlines that “shame seeks to confess. To be heard, to be borne by another, to find witness,” but it is the conflicting “failure to be recognized” that makes shame possible (113). In sum, feeling shame means having a witness with no recognition.
Furthermore, one account that spans across women diagnosed with MS is the inability to wear high heels and how this shames a body. High heels are a significant cultural marker for women, at least in the U.S. If you don’t have them, if you don’t wear them, in a way, your body stands out; it is marked and goes against the grain of feminine normativity. Moreover, when a woman doesn’t have a choice in the matter, it strips her of her agency and feels disempowering.
Roz, who has MS and was also a nurse practitioner at the MS neurologist I would eventually see for my MS, was talking about how she couldn’t wear high-heeled shoes. She would go to the mall and see these high fashion shoes and I remember she talked about how hard that was because they didn’t look right with a leg brace or a wheelchair, and she couldn’t walk with them on. Simply, we just can’t wear the kind of shoes young “healthy” women can wear. So say you see a cute pair of three-inch heels, I just can’t walk around like I used to with them, and it’s a shameful experience. (Ingrasci)
My mother recalls here how the act of not being able to wear, and in a sense, not being able to buy these shoes is a shameful experience. She can’t meet up to normative standards so she is not recognized as a feminine she feels she is.
In sum, even the invisible has visible affective currents here. Visible currents are “real,” felt emotional experiences that affect my mother, Mairs, and Roz through a relation to an unaffected, “unbiased” witness. This audience as witness—keeping in mind we can bear witness to our own sufferings—plays a role in producing and maintaining complex feelings of shame.
“The Politics of Shame is Contradictory”
To be honest, I’m not completely comfortable applying my personal experiences to an academic language or political discourse any more than I am to a medical discourse. It is painful and somewhat disheartening. My whole point here is that the women in my family have had experiences that are not documented, not discussed openly in these spaces. This lack of conversation, this oppressive silence, is what alienates my mother from her coworkers, family, and friends. This hurts our relationship. If she is struggling because she can’t walk on a beach with me, what language do we have to talk about it or to understand each other? Our conversation is mostly based on not making it sound so medical because medical discourse reeks of death, fear, and rationality. However, what we are left with isn’t much. So to arrive at this open, transformative, revolutionary conversation is to work through the emotional “wrongs” and into a new language.
In “Love and Knowledge: Emotion in Feminist Epistemology,” Alison Jaggar states that “all generalization about people are suspect” (58). So while I point to shame as a specific site affecting a few women with MS, it is important to acknowledge that my ideas could also lead to generalizations. To be clear then, I’m not seeking to induce pity in my audience; my attempt here is not to generalize shame or people with MS who feel shame all over again, but rather to look at the emotional damage these cultural generalizations have caused for a few women with MS. Furthermore, I want to suggest shame as a location for not only harm but also for growth and re-integration that trauma, inflicted by a wounding shame, sometimes calls for.
Having said that, through her own personal testimony of living with MS, Mairs argues, that Western traditions regard the body as separate from the self; you say “I have a body…you don’t say, I am a body” (84). In coming to terms with a “crippled body,” one must openly associate with that body. My mother became her body, became her symptoms of fatigue and tingly hands. According to Mairs, this open correlation between the body and the self is what shames people. The body is no longer distant from the self; the body isn’t something owned; the body is the self.
Additionally, the emotion of shame doesn’t originate within the body; it is moved by sociopolitical constructions outside the body. That is, “emotions…are ways in which we engage actively and even construct the world” and therefore, identities (Jagger 55). Emotions are, as Probyn recalls, “cultural and social expression[s]” (11). They circulate between bodies, egos, stories, other emotions, etc. So when an audience of “others” sees Mairs in a wheelchair or with a leg brace, she becomes her body, she becomes a cultural identity, a “crippled” self, someone as generally unable.
Furthermore, in evoking Gilles Deleuze, Probyn discusses the splitting of the body—i.e. an ego splits from a body so as to not experience the full trauma shame can induce (147). More importantly, and as mentioned earlier, she states that shame begins with a witness. In other words, shame is invoked somewhere in the act of feeling exposed without recognition to a witness or becoming a witness to your own suffering. A witness becomes an affective experience, and can haunt a body, even if that original witness is not present in the moment shame is felt. In short, one may blush (an affect of shame), even in the memory of a moment, or in evoking a common cultural assumption, like not being able to control one’s bladder.
Me, my mom, and my stepdad, Jim, were driving to Ohio to visit family. Although the details are blurry, that is it was either to visit family or to say goodbye, I remember that on the way there my mom had an “accident.” She soiled herself. Initially, Jim laughed, which caused me to laugh. My mom got very upset and said something along the lines about how we didn’t understand. We both kept laughing at her.
In moments like this, as my mother’s daughter, I lie somewhere within being a witness and contributing to her shame. Then as a writer, as an artist with word dripping off my bristles, I witness my own suffering as a subject who reinforces shame as an emotion that “others” or alienates a body. That is, emotions in this particular narrative above do not serve my mom, or women like her, or our relationship for that matter, and the one critical question that remains: who do they serve?
To complicate shame further, in The Cultural Politics of Emotion, Sarah Ahmed argues that shame “exposes some wounds, at the same time it conceals others” (102). In shame, that is through witnessing, my mother feels exposed, and an urgency to conceal that which is exposed: a sociopolitical defined weakness that is disease and disability. During a hot day, for example, when she wants to walk around outside with my stepdad and feels tired, she is quick to adapt and find a way to cool off and sit down without exposing the fact that she has MS. The exposure, even the risk of exposure, is wounding: “it makes me feel inadequate” (Ingrasci). Biddle puts it well: shame is the “emotion that makes us most want to disappear [while making us] appear all the more vividly” (114). In sum, cultural assumptions about shame and MS, about how the two are experiences that “naturally” intertwine, are themselves a ghostly witness. In feeling inadequate, in wanting to fall inwards because my mother feels a fatigue she knows is different, she becomes all the more visible, even if just to herself. This visibility then is met with silence, a lack of recognition and the social impact reaffirms shame as bad and segregates my mother further to the outskirts of society. She moves farther from the witnesses (that part of her as well as others) that can offer social integration through recognition.
More specifically, shame implies that a particular part of the self is under scrutiny (hence the witness); the self, in a way, does not match up to heteronormative standards—i.e. political standards established and sustained by a “comfortable” cultural norm. Jagger explains that “we absorb the standards and values of our society in the very process of learning the language of emotions” (60). These “standards and values” are heteronormative and are reflected directly in the shame that takes hold of a body within statements like I can’t wear high heels; I can’t walk; I get tired easily. In sum, shame, as it is called into being by cultural norms and a witnessing, sticks to the narratives of invisible symptoms (e.g. “bees crawling under the skin,” “tingling,” or “the end of high heels”), which are made visible through affects like blushing, and in lacking recognition, reproduce shame as a “bad” feeling. So shame, therefore, works to validate the knowledge of cultural norms—e.g. it is not “normal” to not be able to walk in the heat for an hour—and the cultural norms work to reinforce an alienating shame: a cyclical affective current.
Finally, Ahmed paradoxically states that “we feel shame because we have failed to approximate ‘an ideal’ that has been given to us through the practices of love [and]…only when the shamed other can ‘show’ that its failure to measure up to a social ideal is temporary” may shame be restorative (106-7). As such, shame binds us to one another through our cultural assumptions about what “sticks” to shame. For example, Mairs shares a story about a few police officers that refused to arrest her for trespassing because of her wheelchair (68). These police officers rely on shame as it is attached to a wheelchair and to love. That is to say that they can feel as if they are doing Mairs a “favor,” even though they only further shame her to the edges of society. In sum, the officers as witnesses are bound to Mairs through an emotional economy containing, among other things, cultural assumptions about disability and love. It is in this sense that “the politics of shame is contradictory” (Ahmed 112). We cannot make assumptions about how shame functions without doing the same with other emotions, like love. The two can be convoluted; they are not static in function. Therefore, shame can both provoke harm and transform social and cultural oppression.
An Audience in Me
Last December (in 2011) I saw a film called Take Shelter. It’s a film where the audience is led to believe that the protagonist is schizophrenic. His mother was diagnosed with schizophrenia and when he started showing similar paranoid behaviors the audience was purported to feel that, like his mother, he was a schizophrenic too. The man built a bomb shelter in his backyard because of dreams he was having about a bad storm coming. Not to spoil the movie for my audience now, but it turns out this man didn’t have schizophrenia. He was right. A storm was coming and once he convinced himself that he was what everyone thought he was—i.e. “crazy”—he was far from the shelter he built to protect his wife and daughter.
Upon leaving the movie theater, I discussed with my partner my interests in disability studies and rhetoric. I called upon my experiences as a Residential Counselor at an agency for adults with developmental disabilities. Quickly the conversation turned into my tears and I struggled with how to get an audience to not jump so quickly to the “crazy” card—i.e. this man is crazy because he feels like he has visions of the future in his dreams. Out of nowhere, I started ranting about my mom. I was hurt and angry because I felt like audiences (i.e. witnesses) are quick to judge that MS should make one feel appalling and ashamed. In this moment I realized why I really wanted to research disability: I want people to see my mother’s humanity. I want her to have social agency. I want the audience of this movie, of my paper to understand that, yes, there have been rough times because of the MS, but also that my mother and I should not be shamed for it.
When visiting my stepsister, Lisa, in Washington D.C. during a college break, she took us shopping in a plaza—the name is escaping me now. Walking around, I noticed my mom slowing down. It was summer and the temperature was inching towards 100 degrees. I started to get furious with her, wanting her to just speed up so we could see all the sites Lisa wanted to share with me. My stepdad fell back with her and found a spot to rest while Lisa and I moved on. My heart still aches from my insensitivity.
Even I get caught in this political web of shame. I see my mother’s struggle and offer her no recognition of the pain and shame she feels. It’s uncomfortable acknowledging complicated notions of shame here because I do not want to believe that it pierces the intimate space between me and my mother. But it does. Even the most intimate relationships and moments in our lives are tainted with the cultural politics of emotions.
Moreover, over the years there is one comment my mom repeats to me that stands out: no one at her job knows about her MS. She doesn’t tell them because “I have always had a fear that if people know that I have MS they will view me differently. I have chosen not to be judged by my disease” (Ingrasci). During one of our conversations she further explained this repetitive comment with a story that exemplified why she feels and has felt afraid of people knowing about her MS:
This is also because I had a very painful experience while working in another job. This was before I had MS. This was an executive session meeting with the school board regarding a kindergarten teacher with MS. The comments made by those on the board were very hurtful to me in the way that they judged this teacher by her disease and the limitations MS had placed on her. All I could think about during the meeting was my mother (also an MS patient) who faced this her entire life. (Ingrasci)
What I want to emphasize here is that my mother had a different sort of relationship to her coworkers before her diagnosis and because of her mother. She feels ashamed of what they will think; how they will treat her if they know about her mother’s, and eventually her, MS. Like me, she’s seen the cruelty these witnesses, free of a “crippled” body, show to people with MS, and doesn’t want to bear it, for her mother or herself. Again, despite invisibility, she becomes witness to herself, and her body is marked through a hegemonic emotional economy. At moments she can’t help but blush, and attempts to mask these rosy cheeks, because “[b]lushing feels bad, and it’s a reaction that cannot be faked or brought on without experiencing or remembering the feeling of shame” (Probyn 2). In sum, the politics of shame lies on our (the women of my family) skin and acknowledging the cultural politics of emotions doesn’t make us feel better:
Feeling better is not a sign that justice has been done, and nor should it be reified as the goal of political struggle. But feeling better does still matter, as it is about learning to live with the injuries that threaten to make life impossible. The projects of reconciliation and reparations are not about the ‘nation’ recovering: they are about whether those who are the victims of injustice can find a way of living in the nation that feels better through the process of speaking about the past, and through exposing the wounds that get concealed by the ‘truths’ of a certain history. (Ahmed 201)
This sentiment is another “hand-me-down” in my family. We tell each other to suck it up and feel better. We reinforce feeling better so as to not pursue the political struggle that MS is something to not be recognized. Enough is enough. This shame is political. Again, I will not accept these “truths.”
Hegemony and Outlaw Emotions: The Hermeneutics of Suspicion
Ahmed has already acknowledged connections between shame and love for her audience. She suggests that we can act based on this love and utilize shame through allowing subjects the space to integrate the shameful experience rather than alienate (or “hide”) themselves from others because of it (Ahmed 199). That is to say that we need to change the role, the script of the witness (the crux of this paper). Shame certainly can be a very alienating emotion, but only because “we” as a society perpetuate these norms, or rather, are complicit with them. It is as Jaggar suggests: “the hegemony that our society exercises over people’s emotional constitution is not total” (60). In other words, just because oppressive forces are present in our lives does not mean they are absolute or unchanging. Although there are no “trap doors,” there are “ways out,” but it would be misleading to suggest this work is easy or pain-free.
So Jaggar further discusses how we can move in this general direction with “outlaw emotions” (61-62). While her discussion is somewhat limited in that it focuses purely within the realm of feminist studies, tuning ourselves to reflect on emotions that are “outlawed” is certainly a start to this conversation. Jaggar states that it is “only when we reflect on our initially puzzling irritability, revulsion, anger, or fear may we bring to consciousness our ‘gut-level’ awareness that we are in a situation of coercion, cruelty, injustice, or danger” (61). In sum, we must live a hermeneutics of suspicion; we must be suspicious of a system of interpretation regarding how shame can function in the world. Our emotions still serve a political function here, but they challenge hegemony with its oppressive structures. In short, we may not be able to stop the economy of shame, but we can surely attach new stories to it.
Because of the recent conversations I initiated with my mom for this paper, I learned to be more sensitive to her MS. While I wrote this essay, she traveled to the Caribbean with some family. When she returned and I asked her about her vacation, she said it was hard not to go to the beach with everyone else. She said she felt like she was holding my stepdad back and that some of our family weren’t very “sympathetic” as to why she couldn’t come. Instead of moving on or passing by the comment, we talked about it. I said that I couldn’t really understand because I can go play on the beach freely, but it sounded so challenging and that I love her no matter what.
The power of such transformation lies in rhetoric, in discourse, in language, and in communication. Correspondingly, Mairs states shamelessly that “no one is going to leave me speechless” (96). So in writing, in sharing her story, she works through that shame with people and moments, with witnesses she feels love for, even if it didn’t feel so loving in the moment. Her words are more than text on a page; they are a “bodily” rhetoric, a rhetoric that develops, as we read, an acute awareness of the space between a reader and writer, between the text and white space, between her stories and the world. In sum, as a witness to her own shame, Mairs, through language, begins to offer herself recognition. She bears witness to that which is shameful and offers something new, new words that acknowledge the experience.
Similarly, in “The Lived Experience of Disability” Dr. S. Kay Toombs states:
At one time or another, my illness has affected my ability to see, to feel, to move, to hear, to stand up, to sit up, to walk, to control my bowels and my bladder, and to maintain my balance…All these physical changes can, of course, be described in terms of central nervous system dysfunction and explicated with respect to a demyelinating disorder. Indeed, it may even be possible, through the use of sophisticated medical technology, to visualize lesions in the brain to account for specific physical incapacities. Yet, such a mechanistic description (based as it is on a biomedical model of discourse) captures little, if anything, of my actual experiences of a bodily disorder. I do not experience the lesion(s) in my brain. Indeed, for me and others with similar disorders, illness is not even experienced as a matter of abnormal reflexes. Rather, my illness is the impossibility of taking a walk around the block or of carrying a cup of coffee from the kitchen to the den. (9-10)
What Toombs is communicating here is that we can discuss how the myelin sheath disintegrates and how lesions in the brain cause certain symptoms of MS, but what we can’t do within this medical discourse is capture the inadequacy one feels. It’s not about discussing scars on the spine or purely about where heteronormative structures reproduce themselves in our lives. It is mostly about bringing the “real” stories into play, even if it’s choppy and lacks transition.
In sum, within popular emotional discourses there exists the bodily assumptions that shame is something static, something alienating, and something that signifies a need to hide away. This, I argue, is unnecessary; even if we can’t change the entirety of oppressive social structures themselves, we can regard shame as multi-functional, and we can, furthermore, retell the narratives of shame. Shame, for instance, has the capacity to hurt, to apologize, to take ownership and be bold enough to transform bodies; shame can be all these things and more. For example, in simply talking to my mother for this paper, we expanded this conversation; in presenting these ideas in an academic graduate class, I multiplied this conversation; in Mairs and Toombs’s writing, they developed this conversation, giving words to the process in which shame can become revolutionary.
To conclude, I want to recall Mairs when she says “I have a body…you don’t say, I am a body” (84). Similarly, my mother repeated for me at the end of our three-month-long conversation for this essay, “I have MS, MS does not have me” (Ingrasci).
We have shame, but shame doesn’t have us.
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Ingrasci, Loriane. Personal Interview. 15 March 2012.
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Mairs, Nancy. Carnal Acts. Boston: Beacon Press, 1996. Print.
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