Foreclosed futurity and genres of care in Barbara Peabody’s The Screaming Room

ABSTRACT

Medical humanities scholars such as Arthur Frank have long argued that subjects being able to tell the story of their lives within a coherent, linear temporal framework is beneficial to the patient’s wellbeing. These models for understanding patient identity, however, often provide a binary model of identity where a subject either has a coherent, linear life narrative, or is a “narrative wreck.” This article argues against the supposition that a comprehensible life trajectory is necessary for narrative self-articulation. It does this through theorizing a concept of foreclosed futurity to describe when a narrative is written without the sense of a clear and foreseeable future. Through engaging with John Frow’s formalist analysis of genre, and the affect theory of Lauren Berlant and Brian Massumi, this article provides a reading of Barbara Peabody’s The Screaming Room that demonstrates how narrative identity can be maintained within the “crisis ordinariness” of a foreclosed future.

KEYWORDS:

• Foreclosed futurity
• medical humanities
• recovery
• HIV/AIDS
• affect theory

Introduction

Within the growing field of the medical humanities, much attention has been paid to how subjective self-narration can help the ill or disabled subject not only to better understand themselves, but also to effectively communicate their experience with others. A commonly held position within this field is that a foreseeable and comprehensible life trajectory is a pre-requisite for such acts of narrative self-articulation by ill subjects. This claim has been made both descriptively and prescriptively by scholars, and is also a founding principle of the increasingly popular “recovery model,” a practice in the medical field which encourages patients to narrate their illness as a “journey” toward the gradual “reinvention of self.”¹ In a famous articulation of this theory, medical sociologist Arthur Frank argues that illness narrative must contain “a past that leads into a present that sets in place a foreseeable future.”² Without this, the person suffering becomes a “narrative wreck” and must find ways to reconstruct their life narrative in response.³ Such frameworks have been challenged in recent years, for example in theories of queer time, crip time, and theories of time that foreground multiple, overlapping temporalities.⁴ This article seeks to challenge such a framing of illness narrative by arguing that there are ways of constructing narrative identity without foreseeable futurity, within the “crisis-ordinariness” of what I call foreclosed futurity.

I use foreclosed futurity to describe a situation in which a narrative is written without a sense of a clear and foreseeable future. This does not necessarily mean narratives without an end or an ending, but rather narratives where the structures of ideology, identity, and attachment through which individual and collective futurity become constituted have stopped working. Within foreclosed futurity, subjects must persistently reorient how they understand futurity around the forces of contingency and unpredictability that illness can bring. This article aims to look at how narrative identity is maintained within foreclosed futurity through an affective reading of Barbara Peabody’s 1986 memoir, The Screaming Room. The text documents the 11 months Peabody spent caring for her son, Peter Vom Lehn, while he was dying of AIDS between December 1983 and November 1984.

Peabody’s memoir presents us with the temporality of crisis that the AIDS epidemic created, where “a bad day can hit with no warning,” so those affected must exist with a “constant sense of foreboding [… Waiting] steadily for another crisis.”⁵ This article will particularly use formalist analysis to understand the genres that Peabody deploys to mediate the temporality of foreclosed futurity, as well as how Peter’s AIDS diagnosis and the persistent medical battle that follows facilitated new structures of attachment and identity. Critical too to this analysis is the work of Lauren Berlant and Brian Massumi in affect theory, which will be used to trace how the medical community’s inability to help Peter leads Barbara to focus on the affective, to try to intuit HIV/AIDS as an affective reality. By exploring this, I will analyze more broadly how narratives construct temporality and futurity in light of the loss of bodily control and radical contingency that accompany serious illnesses like HIV/AIDS. This will help us to understand how the crisis of foreclosed futurity becomes managed in the memoir form through a reorientation in the sort of genres, affects, and narrative strategies that subjects use to imagine their future.

Foreclosed futurity and the narrative wreck

To understand the relationship between illness and memoir further, I will first outline in more detail Frank’s theory of identity and narrative. Frank argues in The Wounded Storyteller that the body suffering from illness expresses itself in the stories told by those who are ill: “People telling illness stories do not simply describe their sick bodies; their bodies give their stories their particular shape and direction.”⁶ While there is certainly always a connection between bodies and language, Frank argues that this is foregrounded in illness narratives because the central experience of illness is learning to live with lost control of the body.⁷ He states, citing David Carr, that stories and narratives require a coherent sense of life sequence moving from past, to present, to future, and that the contingency and unpredictability of illness make it impossible to make a coherent storyline for the self.⁸ In Frank’s framework, illness leaves the person suffering a narrative wreck:

The conventional expectation of any narrative, held alike by listeners and storytellers, is for a past that leads into a present that sets in place a foreseeable future. The illness story is wrecked because its present is not what the past was supposed to lead up to, and the future is scarcely thinkable.⁹

In Frank’s telling, such narratives, due to their inability to contain a coherent beginning, middle, and end suffer from a deficit of meaning, with the subjects unable to articulate the severity of the situation.¹⁰ This then leads to a disconnect from a coherent sense of self, and in this, a disconnect between present action and future result.¹¹ For Frank, the purpose of narrative becomes precisely to rewrite the self in relation to illness, to remove this disconnect between present and future and to come to understand a new futurity by re-writing the body, “so that the changed body can once again become familiar in these stories.”¹² Narrative becomes a new map, a way of framing and understanding the body through reasserting a sense of futurity and autonomy.

Franks’ influential text was written in an effort to shift the dominant narrative surrounding ill people from passive victims to active agents.¹³ As Angela Woods argues, Frank’s framework “promotes a specific model of the self—as an agentic, authentic, autonomous storyteller … whose stories reflect and (re)affirm a sense of enduring, individual identity.”¹⁴ This framework though has been challenged in recent years. Gale Strawson criticizes the presupposition that all lives either desire narration or can be formulated into the narrative structures that critics such as Frank outline, or that self-narration is a priori good for you.¹⁵ Disability scholar Alison Kafer has criticized the ideology of what she calls “curative time,” which dictates that “the only appreciate disabled mind/body is one cured or moving towards cure.” For Kafer, those who either cannot be “cured,” or do not seek a “cure” are cast as “people … out of time, or as obstacles to the arc of progress.”¹⁶ Given this, while Frank’s work can be seen as helping those who are ill reassert a sense of agency, it presumes a certain kind of progressive narrative and agential narrator as an ahistorical ideal which cannot apply in every instance.

Along with Frank, analyses of illness narrative contemporaneous with The Screaming Room that foreground the relationship between narrative, identity, and temporality are those by Anne Hunsaker Hawkins and Thomas Couser. Hawkins discusses how pathographies and illness narratives are often built around the idea of recreation or redemption: “The subject of these books is a kind of experience that is so painful, destructive, and disorienting that it results in a counterimpulse towards creation and order.”¹⁷ She argues that such texts are concerned with the mythic and the religious, on the strength of human spirit to counter bodily ailment: the story of illness is one of personal triumph over adversity.¹⁸ The narrative arc of these texts is centered around recovery, either for the ill person, or, alternatively, for an intimate other who learned to move past the death of their friend/partner/child/parent. In this sense, a coherent self-narrative is reasserted, leading to a newly reimagined sense of identity. This model is built specifically on moving past and reaffirming autonomous selfhood.

In taking up such plots, Couser argues that they must inevitably be comic, in the sense that “according to some evident standard, the protagonist is better off at the end than at the beginning.”¹⁹ The central motif of the illness narrative then, is that a narrator experiences great hardship, either personally or through a significant other, and in enduring the experience, learns to grow and reaffirm their autonomous selfhood. If we follow Frank’s argument that such texts are based on lost bodily control, then the illness memoir works to reaffirm a sense of control and a coherent temporality through a rewriting of personal biography.

In her recent book, Navigating Loss in Women’s Contemporary Memoir, Amy-Katerini Prodromou argues that a better framework for understanding narratives of loss and illness is the “textured recovery.”²⁰ Avoiding the dichotomy of portraying grief as either a process of moving past another’s death, or as an irreparable wound that can never be fixed, Prodromou argues for an ‘“in-between-ness’ … Performance of complex recovery happens against the backdrop of this negotiation between two extremes of fact and fiction, stable/unstable identity, and disembodiment/re-embodiment, to end up in the space between.”²¹ Prodromou fundamentally argues for a more nuanced understanding of recovering from loss that is relevant here given how understanding of illness recovery can fall into a similar dichotomy, as Prodromou herself highlights.²² My concept of foreclosed futurity further contributes to this developing critique of recovery as a framework for understanding illness, though my model diverges from Prodromou’s by attempting not to find an “in-between” but by drawing out the contours of the “wreck,” and seeing how forms of identity and meaning making persist within situations of extreme precarity.

For my analysis, I want to specifically question the causality between linear temporality, foreseeable futurity, and coherent identity. This causality creates too strong a dichotomy, where either a narrative must be fully coherent and continuous or, alternatively, be inexpressible. I argue here that in many cases, the person writing of illness does not simply create either a stable narrative or is a narrative wreck, but has found new ways of living, ones that exist within the realities of foreclosed futurity and uncertainty. In order to present an alternative to the coherent identity/narrative wreck binary, I want to decenter the privileging of autonomous coherent identity, and its relationship to temporality and narrative. To do so I want to first engage with Berlant’s work on crisis temporalities. Primarily in Cruel Optimism, Berlant develops a theory for understanding what they call “the production of the present.”²³ The present in their work is not just an object but a “mediated affect … a thing that is sensed and under constant revision, a temporal genre whose conventions emerge from the personal and public filtering of the situations and events that are happening in an extended now.”²⁴ The present is produced through the forces of sense-data, intuitions, ideology, history, and the various situations and events that subjects find themselves in.²⁵ In this framework, the present becomes constructed through the mediation of various attachments, fantasies, and ideologies that construct a past and a future, engendering a subjectivity in relation to them.

I posit then that foreclosed futurity emerges when the attachments, ideologies, and fantasies that are usually used to sustain futurity no longer seem tenable. In the context of the AIDS epidemic, this took on many forms. A central form is the loss of bodily control for those who were HIV positive, living with both the uncertainty of when the disease would progress from HIV to AIDS and the constant threat of opportunistic infections that the ill subject would suffer from. This leads to an experience of the present that is persistently arrythmic, and a sense of being outside of the logics of futurity that sustain the political. At the beginning of Paul Monette’s famous AIDS memoir, Borrowed Time¸ he calls the day he learnt his partner had the AIDS virus in March 1985 “the day we began to live on the moon.”²⁶ There is this sense of occupying a space-time separate from others, that one is outside of normal temporal functioning.²⁷ Because of this, I argue that this loss of the structures of futurity creates what Berlant terms a “situation:”

A state of things in which something that will perhaps matter is unfolding amid the usual activity of life. It is a state of animated and animating suspension that forces itself on consciousness, that produces a sense of the emergence of something in the present that may become an event.²⁸

Here, the present is structured around the event (often of death) that can seemingly happen at any time, but whose contours are not yet understood. There is a sense of “suspension” in relation to this event, where “a relation of persons and worlds is sensed to be changing but the rules for habitation and the genres of storytelling about it are unstable, in chaos.”²⁹ In this sense, the present of foreclosed futurity is very much an anticipatory present, lived stochastically in relation to situations and events that cannot be managed adequately. The framing of the situation gives us a way of understanding narrative without a completely foreseeable futurity and will be critical to my analysis of the text. This way of thinking about futurity within illness explicitly problematizes recovery-centered approaches to illness narrative that insist on having a linear and progressive structure, and allows us to theorize different approaches to narrating and understanding identity and illness.

The Screaming Room

The narrative of The Screaming Room stretches from 4 December 1983, opening the moment after Barbara finds out her son has AIDS, to Peter’s death at the age of 29 on 11 November 1984. Peter is already very sick at the beginning of the text, almost dying from pneumocystis that December. After he recovers, he moves in with his mother, and the text primarily takes place in Peabody’s home in San Diego. The Screaming Room is a memoir, with dated entries, adapted from a journal that Peabody kept while caring for her son, though she apparently only began this journal about half way through Peter’s care.³⁰ The text is entirely focalized through Peabody, so it is important to highlight that when I discuss the temporality of the text and the effects of AIDS, that the reader is seeing it from an outside perspective and should not confuse Peabody’s voice for Peter’s. Couser states that memoirs about HIV/AIDS are more common than autobiographies because those with the syndrome are often too sick to write.³¹ Because of this, part of my analysis aims to show how HIV/AIDS, both its biological and cultural existence, constructs an affective environment, and how Barbara relates to that environment, comes to understand it, and through this, comes to narrativize from within it. As I will try to demonstrate, Peabody’s identity and sense of self is also undermined by Peter’s illness.

Narratives are structured around an ending, an ending that informs where the story begins, and can never escape some sense of a teleology.³² But similarly, stories can have a sure ending (we know already that Peter will die) and yet evoke an unsure day-to-day experience. Indeed, Monette describes his life following his AIDS diagnosis as a “calamity … that will not end till I do.”³³ There are here, in a sense, two temporalities: a certain end—there will be no miracle cure for the calamity of HIV/AIDS and the certainty that AIDS will end him—and a deeply uncertain present, the “calamity” of a loss of predictability and control. This, I argue, is the temporality of Berlant’s situation, where an event is coming that seems certain but at the same time leads to a contingent and unpredictable present. My analysis, then, is governed by the question of how AIDS and the ensuing medical battle of this text forces adaption, forces new genres and structures that allow Peabody to deal with the everyday contingencies of the disease.

Illness narrative

While The Screaming Room is certainly an illness narrative, it undermines many of the genre conventions that engender the autonomous, agential storyteller. In his brief analysis of the text, Couser highlights how it features almost no biographical information on Peter or Barbara before Peter’s illness, and also, unlike most other illness narratives, the text has no secondary plot outside of the central relationship of Peter and Barbara. The text also ends very quickly after Peter’s death, with Peter dying on page 272 and the book ending on page 278. Because of this, Couser considers it “a good, if rare, example of a published illness narrative that does not aspire to be a biography.”³⁴ Indeed, the Los Angeles Times review of the book, that recommended reading it, opened by trying to explain how it was not “another of those ‘My husband died of a heart attack but I bravely lived on’ kind of [stories].”³⁵ The text, in a sense, is not about Barbara per se, in the sense that the narrative logic is uninterested in what she does after, in how she progresses past this calamity. The future is closed for Barbara, because the text does not present us with any aspect of her life not immediately attached to Peter and his wellbeing. The lack of attempt toward biography is important, because it is the sense of a strong individual identity, with a narrative containing a coherent start, middle, and end, that ensures coherent temporality in illness narrative. In the framework of Frank, coherent identity and coherent temporality are deeply connected, and the illness memoir is generally seen as the reassertion of autonomous selfhood and futurity for a narrator. If The Screaming Room is specifically not attempting to be a biography for Barbara, then the text is problematizing the common narrative framework of moving past a loved one, and of finding an autonomous identity outside of that person. Instead, Barbara’s identity is constructed as inseparable from Peter’s.

Motherhood and the promise

I want to argue that The Screaming Room frames the relationship between Barbara and Peter in terms of motherhood, and this is key to how the text presents narrative identity outsides of the conventions of biography. I want to use the mother-child relationship as a genre to understand how care comes to be imagined in this text. I think of genre along the lines of John Frow as a form of “symbolic action” that produces meaning from a social situation through the use of recognizable and organized forms.³⁶ Genre then, is not simply “thriller” or “comedy” but includes formal features such as writing style, thematic topics, situations of address, and functions of rhetoric, whatever are the recognizable forms that create meaning in a situation.³⁷ To say that motherhood is a genre is to say that it is a form of symbolic, social action that Peabody uses in her writing in order to make sense of this situation. It is a structure of expectation that enables narrative to be arranged.

Her position as his mother is emphasized throughout the text in Peabody’s persistent use of metaphors relating to childhood when discussing Peter. When Peter is recovering from pneumocystis and goes for his first walk by himself, we read: “It reminded me of when Peter, at seven years old, made his first trip downtown;” following a seizure, she describes him as “childlike, with small boy’s innocent curiosity;” when Peter’s sister has to help him at the DMV, Peabody describes how “[t]hough we try to maintain his autonomy, he’s as helpless as a child.”³⁸ In these examples, Peter’s loss of bodily control, the condition of his illness, is portrayed as a regress into childhood. Simultaneously, the condition for Barbara’s care is consistently framed in terms of motherhood. She describes how she is “an infant’s mother again, with every sense heightened to respond to the least sound and movement.”³⁹ When Peter has an episode of incontinence, Barbara tries to convince Peter to let her clean it by saying “Look, Peter, I’ve had years and years of experience in cleaning up that stuff—all four of you kids.”⁴⁰ On the one hand, this registers the effects of AIDS as a form of regression: that, due to his AIDS diagnosis, Peter’s life is not moving forwards but backwards. The effects of foreclosed futurity are seen here in how Peter seems to fall out of the logics and structures through which we conventionality understand futurity and progress. At the same time though, motherhood becomes a script for Barbara, a preexisting set of expectations that allows her to understand how she must care for Peter. Motherhood is a genre and a form of attachment that allows Peabody to adequately respond to Peter’s AIDS diagnosis. This genre also orients Barbara by borrowing from the overarching phantasmatic structures of normative realism and reproductive futurism, despite the ostensibly non-normative situation of a mother caring for her 29-year-old son as if he were an infant. Here, the familial structures that govern and sustain normative realism, such as motherhood and mother-son relationships, are reimagined to respond to foreclosed futurity.

In Adrienne Rich’s famous work on motherhood, Of Woman Born¸ produced almost contemporaneously with The Screaming Room, she presents an image of the societally constructed mother figure as such:

a “natural” mother is a person without further identity, one who can find her chief gratification in being all day with small children, living at a pace tuned to theirs; that the isolation of mothers and children together in the home must be taken for granted; that maternal love is, and should be, quite literally selfless; that children and mothers are the “causes” of each other’s suffering [… mothers] feel they must be at home, on the qui vive, be that ear always tuned for the sound of emergency, of being needed.⁴¹

Such a description matches Peabody’s treatment of Peter almost perfectly, given the persistent need to be tuned into Peter’s emotional states, the sense of duty she has, and how she must always be ready for emergency. Cindy Patton notes how during the early years of the US AIDS epidemic, mothers and were often imagined as bridges between people with AIDS who were imagined as “deviant” and mainstream society.⁴² Eva Feder Kittay further argues that in many narratives of hospital care, “maternal relation becomes a paradigm, an analogue, for social relations in which vulnerability is central.”⁴³ We see here that motherhood becomes a paradigm, a genre, through which care becomes understood. In terms of an analysis of temporality, the genre of motherhood has several narrative implications. Opposing the dialectic of the narrative wreck, in Peabody’s text meaning is not foreclosed by the lack of futurity, but instead new (or in this case, old) structures and genres are being deployed to make narrativity continue in the present. The use of mother-son relationship as a genre is precisely a product of foreclosed futurity, and the attempt to manage contingency while maintaining identity and narrative cohesion. It is further a subversive act, redeploying cultural approved identity constructions in order to care for a person ostracized from society due to a prohibited sexual identity and contagious disease.

The concept of motherhood also speaks to the overall narrative structure through which the temporal frame is maintained, which is based on the idea of the promise. The promise is first introduced at the hospital during Peter’s first bout of pneumocystis. After telling Peter that she knows he has AIDS (he has not mentioned it yet), we read: “Peter’s green eyes, large and hollow, speak to me, sadly, wordless, I am going to die. Please, don’t let me die! And my eyes answer, I am here. I will not leave you.”⁴⁴ From the beginning of the text, we are led to believe that Peter’s death is inevitable. As Peter’s father (a doctor) says when talking to Barbara at the start: “His chances of surviving aren’t good, they told me … He waited so long to get help that he’s extremely weakened … every day he lives is a good sign.”⁴⁵ Before they even head back to San Diego, Barbara seems resigned to Peter’s fate: “if he’s to die, I’ll be here for him.”⁴⁶ One newspaper article about Peabody from this period is explicit on this point: “[Peabody] says she began missing [Peter] a year earlier, when she first learned of his AIDS diagnosis.”⁴⁷ This promise, I will not leave you, then, works to structure the text’s temporal framing. The overarching future, in a sense, is rendered foreseeable, that Peter will die but she will not leave him, and this promise is what guarantees its maintenance, what guarantees the text’s narrative can continue. In Berlantian terms, Peter’s death is the event that structures the situation that the text narrates from within.

We can see the implications of the promise, and its temporal horizon, later in the text:

I hurt so much for him. We are both so hurt, and I doubt sometimes if I can keep on.But I must. I promised. How can I ever forget the silent plea of Peter’s eyes back in New York? As long as he wants to live, I will find the strength to keep him living.Once he decides it’s over, I’ll have to find a different strength—the strength to help him die, to let him go, to say the right words, to touch him when he wants to be touched and not when he doesn’t. And to accept my inevitable defeat. I cannot accept that yet.⁴⁸

The narrative does not, in a sense, desire progression, but instead some kind of stasis: “to keep him living,” to preserve what has not yet been lost. Peabody wants to maintain whatever control can be held on to for as long as possible, but the end is certain: Peter will die. The narrative drama is structured not around whether he will live or not, but around the idea of Barbara’s strength, of whether she will be able to carry on this duty to support Peter, if she will be strong enough to keep him living, and, indeed then, to accept defeat and let him die. It is important that the text opens with the moment immediately following Peter’s AIDS diagnosis, because this, to some extent, maintains a progressive plot: the only sense that Barbara will be better off after the end of the text than the start, is that the calamity has ended, that she was able to carry it through until the end. In this sense, the futurity imagined is that of terminal care, of maintaining bodily control for as long as is possible. The horizon is one foreclosed, where hope becomes only that one can preserve oneself for an indefinite period of time.

The framework of the promise and the genre of motherhood illuminates two points of divergence from traditional readings of illness narrative. Firstly, the narrative progression is built toward a calamity where the best one can hope for is stasis.⁴⁹ Secondly, the narrative is deeply tied to Barbara’s relation with Peter, given that there is no secondary story, and that Barbara’s narrative progression is entangled, not with her moving past Peter and becoming autonomous, but with her “carrying him through,” with her fulfilling this sense of duty to him. The text goes to great length to demonstrate their affective connection, how, while being focalized through Barbara, that she is not autonomous from Peter. At one point early on we read about how “my spirits will be inextricably tied to [Peter’s]. When he feels well, so do I. And conversely, when he is not well, my anxiety increases.”⁵⁰ In this, we see how Barbara’s identity is constructed in relation to Peter’s, how the genre of the mother-son relation is working to orient the present and herself.

This identity though, is completely contingent on her relationship with Peter. Later we read how “He is part of me … I, too, die a little each day with him.”⁵¹ After Peter’s death, we read how Barbara “cries for loss of part of her own body and soul.”⁵² Importantly, in this final section, Barbara imagines herself in the third-person. Peabody writes that “I don’t have to be strong anymore, the strengths built up during months and months of tension, of angry energy, dissolve, and I am just another mother who has lost her child.”⁵³ This demonstrates the extent to which Barbara’s identity is so tied to Peter during this period, that following his death, she becomes this generic, “just another” image of a “mother who has lost her child.” This can be understood as a response to 1980s AIDS panic and the dehumanizing of people with AIDS and their carers: to equate the loss of those affected by the epidemic to this “generic” figure of tragedy is to combat stigma. There is still here a connection between identity and temporality, in that Peabody constructs her life story in relation to Peter; her promise not to leave him, the promise that caused all this “tension” and “angry energy,” maintains the temporal frame. But once he dies, this frame evaporates and so does her image of herself. This generic identity frame is what fundamentally allows Peabody to maintain the “stasis” that she seeks as part of Peter’s recovery, finding a coherent narrative in the genre of mother-son relationships. At the same time though, the foreclosed futurity caused Peter’s AIDS diagnosis precisely works to undermine Peabody’s own sense of herself as an autonomous subject. This then means that when Peter dies, Peabody’s own ability to narrativize herself and her future is undermined.

Crisis ordinariness

For this section, I will explore how the specific sense of stasis that Peabody desires operates, not the inevitability of death, but the lived day-to-day experience of calamity, as well as the narrative consequences of this structuring of identity. To theorize this, I want to further discuss Berlant’s idea of crisis ordinariness and how it can be seen in Peabody’s need to craft new ordinaries. Crisis ordinariness can clearly be useful for understanding the precarious futures that HIV/AIDS engendered (indeed, Berlant uses Gregg Bordowitz’s documentary, Habit, about his experience with HIV, to illustrate the concept). The unpredictability of HIV/AIDS, along with the myriad of different illnesses associated with it, led precisely to a contingent, seemingly foreclosed sense of futurity, and a need to create new ways of conceiving futures.

Berlant uses crisis ordinariness to move away from the views of trauma theory, developed primarily through the work of Cathy Caruth, where trauma exists as a self-shattering event that “detaches the subject from the historical present, sentencing its subjects to a terrifying suffusion of the past into something stuck in the subject that stands out ahistorically from the ordinary.”⁵⁴ Trauma, in this framework, is characterized by a logic of exception. The traumatic event refuses to be narrativized, and therefore, blocks the subject’s own sense of temporal coherence, leaving them with a sense of being detached from the present. This overlaps with Frank’s analysis of illness, where the inability for the subject to narrativize itself makes it temporally out-of-sync with external reality. Trauma and illness can certainly cause such an effect, but, for my analysis, I want to argue that to have lost a sense of the future does not necessarily leave one a narrative wreck, but instead that identity and narrative persist, under a rethought sense of presentism. As Berlant puts it, in crisis times, “being treads water; mainly, it does not drown.”⁵⁵

This is to say that crisis creates not only dislocation, but also works to create new ordinaries. These new ordinaries are not necessarily stable or certain, in fact they are primarily neither of these things, but the framework of crisis ordinariness works to explore how in these times of crisis, even precarity and uncertainty must find ways to be managed and understood. I want to use this framework to think outside of the strong dichotomies and states of exception that I see in Frank’s work as well as Caruth’s, and look to how narrative is maintained without a clear futurity. We have already seen examples of these genres in the use of motherhood and the promise, which help the text find orientation and coherence in the present, and this section will explore in more detail the specific methods of monitoring and control that these genres require.

Throughout The Screaming Room, we see Barbara attempt to maintain a sense of the future in the myriad of ways that she attempts to control the effects of Peter’s illness, and also in how she must persistently re-orient her expectations in relation to what is happening. Barbara continually grasps for ways to measure Peter’s progress. We are often reminded of Peter’s weight as it goes up and down. Peabody writes: “He’s down to 118 pounds,” “his weight is back up to 122 pounds;” “He weighs 111 pounds tonight, six less than two weeks ago.”⁵⁶ Such descriptions become a tool for monitoring progress, a way of relating the present to the past. If the crisis time of HIV/AIDS is arrhythmic, characterized by bodily contingency, weight becomes a vital method for temporalizing, for retaining a consistent measure across time.⁵⁷ We also see Peabody readjust her expectations as she attempts to assert the stasis described earlier. When Peter first starts showing symptoms that he could go blind due to Cytomegalovirus—a viral infection harmless to most people but which can cause blindness and brain inflammation for those suffering from HIV/AIDS—we read “Oh, God, no … No, please. Don’t give us that, too.”⁵⁸ But after another ten pages (eight days in the text) we read: “I think I can handle complete blindness. What frightens me about not treating the diseased retina is the possibility of the infection spreading from there to the brain.”⁵⁹ Such a description speaks precisely to the contingent present, in that the expectations for the future must be constantly rethought and reimagined in order to keep some sense of coherence. These kind of monitoring and reorienting processes are necessary for Barbara’s promise not to leave Peter to be kept and the narrative to stay structured.

Other ways that this temporality of crisis is mediated is in the persistent emphasis on foreboding and paranoia. Early on Barbara takes a day off, leaving Peter alone, and he has several bouts of diarrhea; after this, we read: “Today, I realized that we can count on nothing. A bad day can hit with no warning. And nothing in my life is worth not being here when my son needs me.”⁶⁰ Part of Peabody’s promise, the I won’t leave you that engenders the text’s overall temporal arc, requires that she be always available, always ready for a bad day to strike. We see this manifest in guilt whenever she is unavailable, like when Peter has a CT scan, leaving Barbara 40 minutes to relax. She returns early, after 30 minutes, to find that the scan did not happen because of Peter’s claustrophobia, and we read: “The claustrophobia. Damn. I should have warned them about that … I feel guilty for leaving him.”⁶¹ Even half an hour it seems, is too long to be separate from Peter. She blames herself for failing to anticipate Peter’s claustrophobia, for not being able to properly control the situation. Peabody starts sleeping in Peter’s room because she realizes he could have a seizure in his sleep and therefore “it’s never safe to leave him alone.”⁶² We read how when Peter is being cared for by his father, Peabody goes to a barbeque, but fails to enjoy it because she “cannot seem to break the bonds of worry even for a few hours.”⁶³ These examples make apparent something that Peabody states clearly in October, near Peter’s death: “for ten months now, control has only been an illusion.”⁶⁴ The fact that this control cannot be established, means that she must be persistently, unendingly vigilant. This is itself another attempt at control, but it is such an “illusion” that allows her to persist; it is a requirement of this precarious future that must still be imagined.

Intuition

The crisis that HIV/AIDS creates, the need to be always tuned in to Peter’s physical state, also manifests in the development of new intuitions. Intuition describes the “process of dynamic sensual data-gathering through which affect takes shape in forms whose job it is to make reliable sense of life.”⁶⁵ Intuition describes “where affect meets history in all of its chaos, normative ideology, and embodied practices of discipline and invention.”⁶⁶ The question posed by intuition is how the present, through sense data, comes about, how it gains a past and a future, how—thinking with Frank again—it creates a subjectivity. If narrativizing illness requires one to learn to manage contingency in the body, to manage the lack of control, then intuition is the precise point where body and affect meets narrative. We see an example of these intuitions later in the text. Diarrhea and incontinence are frequent symptoms that Peter suffers from, and we get a sense for the ritual built around this later on:

I have become very adept at sliding rubber gloves on in two seconds flat. I keep four or five towels hanging on the towel racks, and a pile of eight or ten clean washcloths on the toilet tank next to another pile of clean underpants … We are quite organized.⁶⁷

Such attempts to manage contingency reassert a sense of futurity because they are forms of control. But what is interesting too is how these practices are rendered as bodily, in the process of becoming “adept at sliding rubber gloves on.” The crisis ordinariness of temporal foreclosure precisely creates these new bodily habits and routines, new intuitions, which remap how those affected come to engage and intuit the world and the present moment. Here, foreclosed futurity requires the development of new intuitions that ground subjects in the present.

Intuition is also seen in The Screaming Room in how HIV/AIDS creates affective states that Barbara then attempts to intuit and understand. We see this in some of the ways that AIDS-related illnesses are conjured as autonomous entities affecting Peter. When Peter seems like he might have a seizure, Peabody says that it is “as if [he is] manipulated by an invisible, diabolical hand;” she describes “the demons inside [him];” and how Peter’s body is “besieged by tuberculosis, thrush, herpes, pneumocystis, CMV.”⁶⁸ Such descriptions autonomize AIDS-related-illnesses, make them separate from Peter, which on one level speaks to the lack of control that illness engenders.⁶⁹ What is interesting though, is how Peabody is also tuned into emotional states and views these as autonomous as well. Peabody writes that “my constant sense of foreboding hovers over me. Though I try to ignore it, it waits steadily for another crisis. Every morning at five A.M., it wakens me, and I can sleep no more;” “my fear wakes me up in the early morning;” “the storm has been moving in all day, slowly clouding and darkening the landscape of Peter’s brain.”⁷⁰ The foreboding “hovers over;” she is not woken up in fear by woken up by fear, and Peter is affected by a storm outside of himself. All of these, both symptoms of illness and emotional states, present as forces in the environment.

In his influential essay, “The Autonomy of Affect,” Brian Massumi writes about how affective intensities work as de-subjectifying forces that suspend linear narrativization. He is careful to distinguish affective intensities from emotions, arguing that “emotion is a subjective content, the socio-linguistic fixing of the quality of an experience which is from that point onward defined as personal. Emotion is qualified intensity.”⁷¹ Affect by its definition is non-language, “a moment of unformed and unstructured potential.”⁷² Once it becomes understandable within language it ceases to be affect, instead becoming feeling or emotion, becoming “qualified.” While we can certainly think about “foreboding” or “fear” as emotions, the fact that they seem to come from outside, both separates them from subjective experience, while also making them something that threatens subjective autonomy. The lived experience of HIV/AIDS is specifically registered in these affective intensities, in these de-subjectifying states.

Registering the virus as something affective seems particularly threatening if we follow Frank’s concept of bodily control. The virus literally escapes Barbara’s ability to understand it, narrativize it, and to register it into a coherent life story. The lack of control is registered at the pre-linguistic level of the affective. At the same time, attempting to register and understand these affects precisely becomes a strategy for combatting the virus. It is one of the many strategies that writing within foreclosed futurity requires, because it gives the possibility of imagining a future. If we look at one section before Peter has a seizure, we see how Peabody attempts to intuit the affective, to use it to understand and prepare for what will happen. In this section, Barbara is worried that Peter could have a seizure, but when she calls the doctor she is assured that this cannot happen because of the amount of medication he is on. Peabody writes though that “The entire apartment is charged with electricity. Neither of us has slept all night,” and that “I am here, I am with Peter, and I think he’s wrong.”⁷³ In this, Peabody is trying to register and respond to the possibility of crisis; she must be attuned to these affective charges when doctors cannot help, in order to respond to the possibility of a seizure. Peabody does whatever preparation seems possible, like laying out Peter’s clothes the night before “fearing he might not be able to make decisions today—and fearing a quick trip to the hospital.”⁷⁴ The sentences then become short and choppy: “He’s back in bed. I sit down again. Quiet. He’s up, walking around his room. I stand, listen, sit again. Up, listen, down. The morning passes slowly, my foreboding intensifies. I can’t eat.”⁷⁵ Peabody here gives us a sense for the passing of time, where every individual moment, every movement, must be paid attention to and registered, interrogated for a sign of something happening. The situation could change at any moment, and so even “quiet” means something. There is a sense of no temporality outside of the immediate moment, because there is no sense of certainty outside of this moment. Peabody feels what is wrong but cannot respond to it, cannot incorporate it into a causal narrative. It is precisely how these affects seem out of her control, as happening separate from her, that speaks to this contingency, to this presentism. A correlation cannot be made between current affect and future result.

Indeed, Massumi describes this presentism as part of affective intensities:

Intensity would seem to be associated with nonlinear processes: resonation and feedback which momentarily suspend the linear progress of the narrative present from past to future. Intensity is qualifiable as an emotional state, and that state is static-temporal and narrative noise. It is a state of suspense, potentially of disruption. It’s like a temporal sink, a hole in time, as we conceive of it and narrativize it.⁷⁶

What Massumi describes here is affect’s power to suspend our ability to linearize time by suspending our ability to narrativize it. This creates this sense of “narrative noise,” where moments cannot be properly organized because their individual importance cannot be assessed. This is precisely what happens in the above section, where every moment is registered and incorporated into an “and then, and then” structure. The situation is fixed around the potentiality (here, of a seizure), and whatever disruption could come but cannot yet be understood. But we also see these affective intensities disrupt narrative in the text’s use of repetition regarding emotions. Peabody writes “A day of horror, horror, horror;” later in the text Peter “is wasting, wasting, wasting;” and when Peabody is cleaning diarrhea we read: “This wretched cruel diarrhea. I hate it so much and the humiliation, the debasement it causes. Damn damn damn damn!”⁷⁷ These use of repetition makes these moments “static-temporal” and “narrative noise:” they only progress as repetition, as states of suspension in the present without a clear future. They mediate an affective present, where the overwhelming sense of emotion prevents any further development.

Frank’s text actually details a similar sort of narrative but under different terminology. The fifth chapter of The Wounded Storyteller characterizes what he calls “chaos narratives.” As Frank writes:

In telling the events of one’s life, events are mediated by the telling. But in the lived chaos there is no mediation, only immediacy. The body is imprisoned in the frustrated needs of the moment. The person living the chaos story has no distance from her life and no reflective grasp on it. Lived chaos makes reflection, and consequently storytelling, impossible.⁷⁸

In this, the lack of distance from the “lived chaos” leads to an inability to make narrative coherence. Indeed, much of the features of chaos narratives that Frank describes are present in The Screaming Room. Frank describes “an incessant present with no memorable past and no future worth anticipating,” which we see in how the story cannot escape the dyadic relationship of Barbara and Peter; the “staccato pacing” of “and then, and then, and then” narrativizing, which we saw in the seizure episode; and how “the body telling chaos stories defines itself as being swept along, without control, by life’s fundamental contingency … Contingency is not exactly accepted; rather, it is taken as inevitable,” which we see in how Peabody is constantly re-orienting her affective expectations.⁷⁹ While Frank does not use an affect theory framework, I would see the conditions he describes as chaotic as precisely what Massumi describes in affective intensities: an intensity of affect causes an inability to temporalize linearly, which leads to an inability to construct experience into a coherent structure, which then leads to “and then and then” stories, and the sense that bodies are simply being carried along by contingency.

Where I would disagree with Frank, however, is in his precise description of such narratives as “chaos,” or as containing the “absence of narrative order.”⁸⁰ In Frank’s telling, where control means futurity, and futurity means narrative, and narrative means identity, little space is left for the precise ways in which the present and subjectivity is maintained, even in the absence of a coherent futurity. Indeed, this is why I invoke Berlant and their theory of crisis ordinariness. It is not simply that this affective, traumatic crisis is blocking a true, coherent narrative, a real futurity. But the present is being mediated precisely through these methods of control: Peabody’s “and then and then and then” narrative style in these sections, her dyadic relationship with Peter and her attempt to understand contingency and to control it, are the tools necessary to assert order on Massumi’s “hole in time.” This is not to dismiss Frank’s point, but simply to posit that the futurity created by this calamity, requires what Berlant would call “genres of the present”: forms of symbolic action that reassert a sense of order even when such affective intensities and contingencies make futurity seem impossible and distant.⁸¹

But, as Berlant highlights, these do not create a foreseeable sense of futurity, but an “irreducible alterity, constant lag, and [a sense of] catching up with this ongoing present.”⁸² If we think with Massumi again, he describes how affective intensity is “incipient”: it is a force that affects us before we consciously register it, and at the point we do register it, it is already past.⁸³ In this sense, it is specifically when Peabody is attempting to be conscious of these affective intensities, to, in a sense, learn to predict and control them, that this lag emerges, this inability to understand the present enough to manage it and ensure a future. What we see in this narrative is both the sense that Barbara is being carried by a force outside of her control, but also that she must do her best to intuit this force, precisely to be able to counter it and gain some kind of control, a control that could let one control the crisis. But this fails: control becomes only an illusion because of this lag, and she can never catch up with the present.

Conclusion

Through framing my discussion of The Screaming Room around foreclosed futurity, I aim to demonstrate that a foreseeable future is not a pre-requisite for narrative self-articulation. The question animating much of this discussion has been how subjects construct narrative identity in the memoir form within foreclosed futurity without simply devolving into “narrative wrecks.” In other words, how is the temporal frame of the present maintained when the future cannot be relied on? In The Screaming Room, we see this question posed on two levels, the first being how Barbara comes to understand the death of her son, presented as almost certain from the beginning. Such a situation becomes understood through the promise, the promise that she will not leave him, which engenders the overall temporal arc of the text, where Peabody will work to maintain Peter’s life as long as she can. Such a framework leaves her to define herself entirely in relation to Peter, meaning the text breaks with the conventions of illness narratives which often work to construct a coherent, autonomous sense of identity for the narrator past illness. As opposed to the more conventional view of trauma and illness as causing “chaos” (á la Arthur Frank) or dissociative temporal disfunctions (á la Cathy Caruth), I have attempted to demonstrate how foreclosed futurity creates new genres and structures that maintain the temporal frame. We see this in how the text presents motherhood as a genre, how it shows the management of affective intensities, and in how Barbara attempts to intuit the effects of the disease as best as she can. What these examples demonstrate is how a contingent future requires presentist genres and structures that do not cancel futurity, but force it into new, often unstable states. Even if the overall temporal arc seems certain, the everyday must still be invested in, must still be ingrained with a sense of its own continuation.

In this article I have used foreclosed futurity in order to rethink the almost exclusive focus on linearity in illness writing. In this, the context of the American AIDS epidemic is important, as it led to a breakdown in how those affected conceptualized futurity because of the ruinous effects of the disease, the uncertainty of when it will strike, and the social forces of stigma and discrimination that accompanied it. Subjects affected by the AIDS epidemic lacked both personal health and safety as well as the phantasmatic structures of futurity through which individuals in society comes to understand and perpetuate themselves. The affective structures that usually ensure the reproduction of normative realism were challenged, leading to writers who described themselves as “living on the moon,” or in a persistent present that had lost any sense of an arc.⁸⁴ In this, AIDS narrative can offer a clear rebuke to medical humanities research that poses linear, progressive narratives as the normative principle for how illness narrative should be constructed.

At the same time that this study is situated in the history of the AIDS epidemic, I hope foreclosed futurity can also problematize the almost-exclusive focus on recovery-based narratives both within medical humanities research and within the growing institutionalization of recovery models in the Anglophone medical field. As Joel Tupper Braslow highlighted as early as 2013, recovery models are now “the hegemonic guiding principle of public mental health policy.”⁸⁵ While recovery narratives can be greatly beneficial to those in healthcare, they fail to account for illnesses that leave subjects without a comprehensible life trajectory, and whose stories therefore cannot be told in a linear, progressive, recovery-based narrative. We should remain critical of how certain forms of narrative can become normative and ahistorical models, and mobilized uncritically within both literary and medical discourse.⁸⁶

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Max Casey

Max Casey is a PhD candidate at Free University Amsterdam. His research explores illness writing and futurity from a multi-media perspective, bringing medical humanities research into conversation with developments in queer and trans studies and life writing scholarship. He holds an MA from Utrecht University, having written a thesis exploring the American AIDS epidemic, and the textual strategies that those affected made use of in order to construct identity from within a foreclosed future.

Notes

1. Couser, Recovering; Hawkins, Reconstructing; Frank, Wounded; Charon, Narrative; and Bonney and Stickley, “Recovery and Mental Health,” 144.

2. Frank, Wounded, 54.

3. Frank, Wounded, 55.

4. Casey and Clemens, “Viral Temporalities.”

5. Peabody, Screaming, 89, 59.

6. Frank, Wounded, 27.

7. Frank, Wounded, 30.

8. Frank, Wounded, 60.

9. Frank, Wounded, 54–55.

10. Frank, Wounded, 97.

11. Frank, Wounded, 58–60.

12. Frank, Wounded, 2.

13. Weingarten, “Review,” 308.

14. Woods, “The Limits of Narrative,” 75.

15. Strawson, “Against Narrativity.”

16. Kafer, Feminist, 28. Similar critiques of the teleological, progressive narrative of recovery can be found in texts such as Cazdyn’s, The Already Dead; and Roitman’s, Anti-Crisis.

17. Hawkins, Reconstructing, 24.

18. Couser, Recovering, 5.

19. Couser, Recovering, 91.

20. Prodromou, Navigating, 4.

21. Prodromou, Navigating, 12.

22. Prodromou, Navigating, 6.

23. Berlant, Cruel, 4.

24. Berlant, Cruel, 4.

25. Berlant, Cruel, 52.

26. Monette, Borrowed, 2.

27. It is worth keeping in mind that The Screaming Room describes a specific and narrow part of the history of HIV/AIDS, its history among American gay male populations in the 1980s. This remains an important area to explore, but one must also acknowledge that HIV/AIDS remains a worldwide epidemic that primarily effects Global South countries and nonwhite people. For a nuanced and broader understanding of HIV/AIDS as a global and striated crisis, one can read AIDS and the Distribution of Crisis edited by Cheng et al., AIDS and the Distribution of Crises.

28. Berlant, Cruel, 5.

29. Berlant, Cruel, 6.

30. Rowe, “AIDS Victim’s Mother,” par 1.

31. Couser, Recovering, 6.

32. Mattingly, “Emergent Narratives,” 183–84.

33. Monette, Borrowed, 342.

34. Couser, Recovering, 134.

35. See, “Mother’s Anguished Story,” par 3.

36. Frow, Genre, 2–14.

37. Frow, Genre, 9.

38. Peabody, Screaming, 58, 129, 143.

39. Peabody, Screaming, 116.

40. Peabody, Screaming, 142.

41. Rich, Of Woman Born, 22–23, 37.

42. Patton, Last Served? 92.

43. Kittay, Love’s Labor, 74.

44. Peabody, Screaming, 32.

45. Peabody, Screaming, 23.

46. Peabody, Screaming, 34.

47. Duerksen, “A Mother’s Account,” par. 4.

48. Peabody, Screaming, 94.

49. This desire for stasis is seen in other HIV/AIDS narratives at this time as argued in Berlant, Cruel, 59.

50. Peabody, Screaming, 46.

51. Peabody, Screaming, 90.

52. Peabody, Screaming, 273.

53. Peabody, Screaming, 273.

54. Berlant, Cruel, 80.

55. Berlant, Cruel, 10.

56. Peabody, Screaming, 103, 157, 185.

57. Berlant, Cruel, 57.

58. Peabody, Screaming, 161.

59. Peabody, Screaming, 171.

60. Peabody, Screaming, 59.

61. Peabody, Screaming, 128.

62. Peabody, Screaming, 88.

63. Peabody, Screaming, 160.

64. Peabody, Screaming, 225.

65. Berlant, Cruel, 52.

66. Berlant, Cruel, 52.

67. Peabody, Screaming, 232.

68. Peabody, Screaming, 136, 137, 178.

69. Frank, Wounded, 30.

70. Peabody, Screaming, 89, 178, 135.

71. Massumi, “Autonomy,” 88.

72. Shouse, “Feeling,” 5.

73. Peabody, Screaming, 116.

74. Peabody, Screaming, 117.

75. Peabody, Screaming, 117.

76. Massumi, “Autonomy,” 86.

77. Peabody, Screaming, 126, 222, 143.

78. Frank, Wounded, 98.

79. Frank, Wounded, 98, 99, 102.

80. Frank, Wounded, 97.

81. Berlant, Cruel, 61.

82. Berlant, Cruel, 61.

83. Massumi, “Autonomy,” 91.

84. Monette, Borrowed, 2.

85. Braslow, “Manufacture,” 783.

86. C.f Woods, Hart and Spandler, “The Recovery Narrative.”