Mourning Person

Ricky VARGHESE

…how to mourn a missing body, a body that has gone missing even to itself, spirited away, a body whose wounds will disappear without a trace, like Sade’s Justine, forever young and beautiful, intact and virginal–a continually unwritten surface, unscarred despite an infinity of mutilations? — Comay, 2011

I recently revisited this stunning passage from Rebecca Comay’s Mourning Sickness: Hegel and the French Revolution after a particularly challenging session with my psychoanalyst. In the session, I was thinking about the body, my body in particular, and the identity of being disabled. In returning to this passage, it appeared as though I was searching for something—a feeling, a sensation, perhaps, an affect—with respect to how I, at a very personal and subjective level, experienced my disability. I felt as though my body had gone missing; more specifically, it felt as though it had gone missing to myself. When, then, does a body —a disabled body—become a person? Is it when the fantasy of the perfect able-bodied figuration can be mourned? Comay’s passage concerns Antigone mourning the death of her brother Polynices. The tragic Greek heroine recognized that the only ethical thing to do is to bury and mourn her brother, despite the aggressive injunction against it. She saw in this act of mourning—an act that could cost her her own life—an opportunity to recognize the body of her brother as a person who deserved to be mourned, a person deserving of grief. In my case, who does (or, has to do) the work of mourning, which ultimately might be the work of recognizing the other as a person? Does it fall on myself or on those others around me in the world who perceive my bodily difference? Or both? Is this work of mourning able-bodied-ness an ethical act, perhaps the ethical act par excellence, of recognizing the personhood implicit in the otherness that disability represents within the normative world?

When I refer to my body as having gone missing to myself, I want to be clear that what I am suggesting is not that disability inherently causes the subject to go missing, or absent, or evacuated from the scene of being a figure in the world. I am fully aware of my body and its complicated presence in the world and the reality it has had to become accustomed to. I know that when I walk down the street I am encountered with looks, gazes, and stares. I know that my disability inspires curiosity in others; I also know it inspires feelings of surprise, shock, desire, maybe even revulsion or disgust. I take a certain amount of pleasure in seeing disgust for what it truly might be, as the queer theorist Tim Dean put it, as [representing] not simply a reaction against pleasure but an unacknowledged form of pleasure in itself: the ego-enhancing pleasure of feeling superior to the objects of one’s regard” (Dean, 2014), which in this case would be me and my disability.

Though I do not identify as a woman, in such moments I also find an uncanny resonance in that poignant line from writer Anne Michaels’s novel The Winter Vault which goes like this: “How much of a woman’s body belongs to herself, how much the clay of a man’s gaze” (Michaels, 2009). This is what I was attempting to approach—this feeling that my body appears “unscarred despite an infinity of mutilations,” that it is a surface that, at times, does not feel as though it belongs to me, but to everyone else in how they choose to perceive, or interact with, it. How does one become a person in such an instance? To be sure, becoming a person here does not mean that one “overcomes” their bodily difference or resists its reality as experienced through living in a world designed by systemic and structural forms of ableism. Rather becoming a person—subjectification, in the truest sense—in this context might require the body to be seen for what it is or what it can be, not so much by others, not least by others alone, but, most immediately, by the one who occupies it. The missing body, the body missing to itself, needs to be found by the person inhabiting it; it has to be mourned by its own person.

A First Mutilation—“…a shameful nakedness…”

I was born with a rather rare congenital condition called cystic hygroma. It is also known as lymphangioma, which, in relatively lay terms, refers to a build-up of fluid in the lymph nodes around my neck and chin area. I had my first corrective surgery for it when I was barely a month old and my seventh and last surgery when I was sixteen. At the age of eighteen, shortly before I was to leave for university, I was told I could have one last—it was always this same promise, “one last”—intensive surgery to make a set of significant “corrections.” I still recall the maxillofacial surgeon saying to my parents as though I wasn’t in the same room as all of them, “It won’t be perfect…but we can bring him as close to that as possible…” My parents were keen on getting this seemingly final procedure done. I wasn’t. All my prior surgeries had taken months of pre-operative preparation and it took still even more months to recover afterwards. This last one would be no less involved and intrusive. In fact, it promised to be the most tedious experience I would have had in my young life till then, involving a yearlong pre-operative period of preparation that included extensive dental and orthodontic work, followed by a long surgical procedure requiring the transplanting of bone material from my hip to my jaw, after which the required post-op recovery time would be, at minimum, six to eight months, most of which would involve significant amounts of bed rest.

Much to my parents’ grave disappointment, I refused to undergo this final operation. Having turned eighteen, I could exercise my rights as a newly initiated adult and refuse care if I so wished. I refused it for a variety of different reasons. On the one hand, I had no time to put myself through yet another long and incredibly painful set of procedures which would then yield only the slightest modicum of so-called “improvement.” I was eager to leave home, go to university, and get my life started. I find myself holding on to the belief that, oftentimes, time is just a stand-in for desire. When someone says, “I have no time for this…or that…,” perhaps what they mean is that they have no desire for it. In a literal sense, I couldn’t afford the time. It would mean that I would have to sacrifice, at the very least, a year, perhaps even much longer, of my post-secondary schooling. Still further, it would mean I would have to continue my life at home with my parents from whom, in some sense, I was desperately trying to get away and become more independent.

There was a second, perhaps more significant, reason why I refused to undergo this final treatment plan. I had stopped feeling ashamed of my difference. Or rather, I was able to separate my sense of self as it related to my disability from how my parents experienced it. I “had become individuated from them,” as my analyst described it to me years later. I no longer wanted to live under the shadow of the doubt that they held regarding my marked difference and how it could exist or survive in the world beyond them, in a world that did not necessarily include them. The possibility of leaving home was an attempt on my part to necessarily mourn, and thereby let go of, a past or former sense of myself, one that had always been bound up to and mediated by my parents and how they related to my embodiment. Leaving was not about wanting to leave my body behind, but about taking it with me on what lay ahead of me.

Growing up I was acutely aware of how my parents, both collectively and individually, related to my disability. Collectively, it seemed as though there was a sense of ambivalence or uncertainty they felt toward it. They didn’t know, as my father once put it to me, “how to deal with it”—as though it was something that needed to be dealt with. Individually their respective responses to my disability suggested more to me about them than having had anything to do with me per se. My mother, being professionally trained as a nurse, took on the role of my very own personal nurse. Generally calculated in how she dispensed off affection to her children, she approached mothering me in a coldly technical and clinical sense by charging herself with the role of being my primary caretaker. Having a tumultuous relationship with my father and his extended family, I also became her chief weapon, or rather she weaponized me against them. When I was eleven, I recall her telling me this: “Your grandmother… your father’s mother…when you were born had suggested that I give you up…I thought, how dare she suggest such a thing…you’re my child!” When I recalled this disclosure in a session with my analyst, I remember saying. “….how dare she tell me…her child…something so hurtful?! What was she trying to do by telling me this?!” In hindsight, I have a sense of what my mother was trying to do—she was attempting to create an alliance between her and I against my father and his family by appearing as though she was not only confiding in me an intimate bit of information regarding the early part of my life, but also casting herself in the role of being my most steadfast protector. This would ensure, in her estimation perhaps, that I would always be her willing ally against those who did not want anything to do with either her or me. I was, or rather I became, as I recalled to my analyst, “mommy’s little helper…”

It was easy for me to ally with my mother against my father—an inversion of the Oedipal narrative, with my father being on the outside of the bond I shared with my mother. This came quite easily to me because, while my mother tried to possess me through her forcing an alliance between us from very early on, my father’s relationship to me, as mediated by his experience of my disability, was one of him wanting to disavow me. He had never entirely been comfortable with my disability. He did not know how to “deal with it,” with how he could have had an “imperfect child” as he put it. Forty-three years later, I feel he still does not know how to “deal with it.” The deep-seated nature of his discomfort regarding my disability can be evidenced in the anxiety that informed a statement he made to me when I was eight: “You know…we were never going to have your brother…we were concerned that he would turn out like you…” Some parents say such things to their children without even knowing, perhaps, how cruel they are being; or, maybe, my father did. I distinctly recall how matter-of-fact he was when he said this to me; how matter-of-fact he was when he announced that my brother’s existence had depended on how my parents felt about taking the risk of having another child. My disability represented that risk; I represented that risk . The statement in itself, its cruelty, may have been uttered in a manner so matter-of-fact. Its implicit anxiety—regarding my disability, regarding how I “turned out,” regarding how they feared how my brother would “turn out”—was anything but a matter of fact. My father was, in fact, very afraid that another offspring of his would “turn out” like me.

When my brother was born, my father’s fears were put to rest. The truth is that the chances of my brother having cystic hygroma were miniscule, if anything at all. Cystic hygroma, as I mentioned earlier, is incredibly rare. It isn’t a genetic condition; at best, it could be described as a malformation in the lymphatic system, a “birth defect” as it was put to me growing up—I will return to this notion of my hygroma being a “birth defect” later—and so, I am the only one in my entire extended family on both sides who was born with the condition. In fact, truth be told, I have never met another person with cystic hygroma. That’s how rare it is. I remember telling my analyst once, “…it’s as though I won some sort of existential lottery…” And yet, it was a cause for concern for my parents and especially my father. After my brother was born, my disability became all the more magnified. The lines were drawn so firmly in my familial system. My father now had himself an able-bodied child—a son—he could claim as his own without discomfort and I became my “mother’s child.”

So much of these early years of my life were shaped by the overwhelming weight of this shame that I felt I had to shoulder—a shame that wasn’t even mine, but one that I felt I nonetheless internalized quite deeply. I recall an incident—one that I experienced as profoundly violent, while also being deeply formative—from when I was nine that reveals just how burdensome this sense of shame was. My father had picked my brother and I up from school. He parked the car close to our home. As we were walking to the house, we noticed a group of children on the other side of the street had stopped and started pointing and laughing at me. I could see my father beginning to seethe and get angry. Rather than usher us along quickly into the house, he stopped us in our tracks and looking directly at the group, he pushed me toward them, while holding on to my shirt collar and yelled at them, “Here! Go ahead and laugh! Laugh at him!” I recalled this incident in analysis once and described feeling startled at what had taken place. I remembered not feeling safe; but even further than that, I recall feeling so utterly exposed like I had something to hide, to be ashamed of. Despite being fully clothed, I felt so strangely naked. It would only be years later in a graduate school seminar on the work of Emmanuel Levinas that I would come across a series of passages that could best describe what I felt in that instance. In his short treatise De l’évasion, Levinas suggested this:

Shame arises each time we are unable to make others forget our basic nudity. It is related to everything we would like to hide and that we cannot bury or cover up. The timid man who is all arms and legs is ultimately incapable of covering the nakedness of his physical presence with his moral person…[In] shameful nakedness, what is thus in question is not only the body’s nakedness…[For] what is the meaning of shameful nakedness? It is this that one seeks to hide from others, but also from oneself…[What] appears in shame is thus precisely the fact of being riveted to oneself, the radical impossibility of fleeing oneself to hide from oneself, the unalterably binding presence of the I to itself (du moi à soi-même). Nakedness is shameful when it is the sheer visibility (patence) of our being, of its ultimate intimacy. And the nakedness of our body is not that of a material thing, antit hesis of spirit, but the nakedness of our total being in all its fullness and solidity, of its most brutal expression of which we could not fail to take note…[It] is therefore our intimacy, that is, our presence to ourselves, that is shameful. It reveals not our nothingness but rather the totality of our existence. Nakedness is the need to excuse one’s existence. Shame is, in the last analysis, an existence that seeks excuses. (Levinas, 1982)

Something about the fullness of my body as represented through my disability—its presence in the world as a kind of bodily inscription that I carry with me everywhere I went— became apparent to me in that moment. I felt exposed by my father. It felt as though I was exposed to the elements; interpellated, as such, by the laughter of others. I introjected my father’s shame, which shaped his anger, and felt my disability laid bare for others, felt it as a kind of exposure, a nudity or a “shameful nakedness” that I could not escape or resist. It felt like there was no escape —not so much from who I was or from my disability, but from the lens through which my father viewed me, or the script he had already started to write in his mind about my life. Perhaps, in refusing that “one last” surgical procedure that would “bring” me as close to perfect as was possible, I was trying to map out an escape route for myself. I wanted to escape, but not without my body. I wanted to track down that body that had gone missing to itself, recuperate it from the stories that others told themselves about it, and leave with it, making of it a person and no longer making excuses for myself.

A Second Mutilation—“..to be an exception…”

The figure of the supercrip elides bodily integrity; it transcribes over the story of disability a narrative of overcoming it. It assumes that the crip body can exist beyond its perceived or real limitations. It overrides the script of ableism with its own ableism. It makes exceptions out of bodies consigned to the margins of the social landscape. The disabled body is then expected to outperform its own limitations; the onus falls on the body to excel, rather than reorganizing or reconstituting the systems that serve to restrain or limit the body. There is something biopolitical in nature, in the Agambenian sense of the term, about this state of exception. The sovereign state is replaced by the sovereign figure/ individual of the supercrip. Biopolitics becomes atomized here to the level of the individual who is supposed to be in-charge of their own destiny. There is a totalitarian, even absolutist, sensibility attached to this experience of being a figure that is assumed to be able to surpass what disables it. This became particularly evident in how my parents began to treat me as yet another kind of exception.

I was homeschooled till the age of eight. My parents had the means to hire a private teacher for me and so they did. They feared that being sent to school would mean that I would be exposed to an inordinate amount of bullying from my peers because of my disability. Ironically enough, they were concerned about the emotional impact this would have on me. I say, ironically enough, because I don’t think they assessed how not being sent to school might have its own impact, let alone the very impact they themselves had on my self-perception or my self-image.

It was my homeschool teacher who persuaded my parents to send me to school. He thought it would be important for me to socialize with children my age, that I needed to be exposed to the world, not cloistered away from it. My parents were ambivalent about the suggestion. They were too anxious about what they felt would be the consequences. I recall it requiring some convincing on the part of my teacher to encourage them to let me go to school. He had picked up on the sense that I had a strong aptitude for learning and suggested to my parents that I be tested for giftedness. This is what finally allowed my parents to relent. I recall having to do a series of tests which in the end yielded the result that my teacher had intuited and that my parents were hoping for. Something happened in how they viewed me—a transformation of their image of me felt as though it took place overnight. Suddenly I was no longer the “sick child” who needed their care, but the “smart child” who needed their support. The child they were ashamed of, overly protective of and anxious about, was institutionally deemed “gifted.”

Another mutilation on how I was perceived—it allowed them to “get over” my disability or “deal with it.” In their view, my intelligence would be my salvation—my way out, my escape route.

At first it did feel as though I had finally found that way out from the juggernaut of shame that presented itself to me. I was going to be exceptional, or rather I was going to be an exception. I was sent to school and began to excel at it. It appeared as though school came easily to me and, in a manner of speaking, it did. I enjoyed learning, being challenged, reading ahead of my peers. It also felt, in those early years, that this new-found sense of myself served as a kind of advantage I had over my brother. My parents, especially my mother in her possessiveness of me, would never cease to find an opportunity to compare my brother to me—“…why can’t you be as good at school as your brother?,” her refrain would go directed at him. My brother, the able-bodied sibling, was cast as the athletic, more physical one between the two of us. I was cast as the more studious of the two. This characterization was its own sort of harmful script. Another instance where my body would go missing to itself. When before my exceptional nature was attributed to my bodily difference, my disability, now my state of exception was attributed to my intelligence and what it promised to offer me, an alternate narrative, a body that could do other things, studious, smart things.

An Infinity of Mutilations—“… misrecognition…”

“I feel like I am at a crossroads right now…I guess I am trying to locate the person that I am…trying to see if I can recognize who he has become…,” I recently proclaimed to my analyst in that particularly difficult session that I opened this essay with. I am not in the habit of referring to myself in the third person, but somehow it felt, or rather feels, apt. It feels appropriate especially in light of how disembodied some of the experiences I outlined above have felt to me; a body that has gone missing to itself, a body that is unsure of how or what to mourn in this scene of having gone missing.

The session was difficult because I was trying to contemplate this sense of being at a crossroads. The precise crossroads that I was thinking through in analysis was one at the intersection of academia and private practice. The young studious child had over the course of his schooling acquired five post-secondary degrees, which included two undergraduate degrees, two master’s degrees, and a PhD. I trained in both theory and practice. I was a social worker by training professionally, but I was also interested in philosophy, literature, film, and critical theory, the so-called liberal arts. My doctoral work, which I completed in 2014, was followed by me setting up my private practice as a psychotherapist. Three years into my clinical work, in 2017, I decided to train to become a psychoanalyst at the Toronto Institute of Psychoanalysis. I completed my training in the summer of 2022. All along, I had maintained a foot in the door to the academy as well. I am heavily invested in writing and teaching and harbor fantasies of being both an academic and a clinician. “Why can’t I have both…?” I asked my analyst rhetorically, not expecting an easy answer to my query. I know well how stretched and over-extended I feel most days between both worlds. I know how difficult it is to secure a tenure-stream position in the academy and yet the desire which informs this fantasy structure persists.

“People in my life keep asking me—‘Why academia?’” I said to my analyst. She repeats their query, “Why academia?” I respond, “…but why not?” I elaborate on this. I tell her that beneath that question—“…why are you so invested in becoming an academic?”—I hear the echo of an age-old disavowal of me that assumed that I won’t be able to make it, that I should just accept my “stock in life.” I tell my analyst that “I had drunk the Kool-Aid of my own intelligence…I feel like what I am going through is not so much a crisis of faith…but, a crisis in identity…” What would it mean to leave the academy, school as such, once a safe haven, a cloister unto itself, and devote my life to being clinician. The following exchange ensued:

Me: All my life, I feel like I have been trying to prove people wrong…

My analyst: Wrong about what?

Me: I don’t think my parents expected much from me…they were just grateful, I guess, that I survived…everything I achieved or continue to achieve feels like icing…nothing is treated as just “normal”… as I say it now, I don’t even know if I am invested in that word “normal”…it’s such a horrible, punishing word…

My analyst: And yet…

Me: And yet…everything I do has been made to feel exceptional, outstanding, spectacular…

My analyst: And you came to believe this as well?

Me: Yep…it’s the Kool-Aid…when someone asks me, why do you keep trying your hand at succeeding in the academy…I just want to prove them wrong…I hear in that question something else…I know that that’s about me and how I see myself… always wanting to prove others wrong… always wanting to excel…be other…be otherwise than what I feel they expect of me… which I feel, often, is very little or nothing at all…I feel like I am always having to deal with misrecognition…

My analyst: And I suppose, if you keep doing things out of a fear of being misrecognized…if you keep doing things because you want to prove others wrong about yourself, it gets confusing as to what you may be doing that you actually want to do for yourself… and…on that note…we are at time.

The all-too-popular Nietzschean aphorism suggests that what doesn’t kill you makes you stronger. I can’t attest to the veracity of that statement, but there is a certain truth to what my analyst suggested to me. Proving others wrong isn’t a mark of resilience; at some point, what you want for yourself becomes indistinguishable from what you feel others want for you. Take for instance the marker of the “birth defect.” My parents were always uncomfortable with the idea that I was disabled. From their perspective, it meant I wasn’t, or wouldn’t be, able to achieve certain things in my life. For them, it signified both a lack and a loss of something – ability or able-bodied subjectivity. My intelligence gave them a “way out” of this conundrum that my disability represented for them. What they felt I “lost” through my cystic hygroma, I “gained” in how they began to invest so heavily in the idea of having a gifted child. And so, they refused the label of me being disabled and would describe my hygroma to others as a birth defect.

I internalized this as well. Well into my early twenties, I, too, would correct anyone who categorized me as having a disability. I would explain that my hygroma was a birth defect, parroting what my parents suggested about it. This characterization, aside from being medically inaccurate (because cystic hygroma isn’t a condition that occurs as a result of “simply” being born), is informed by an ableist rhetoric that refuses to perceive the body as it is. It was a kind of psychic exhaustion that allowed me to eventually land at the identity of being disabled. Years of having to explain my hygroma to others, having to correct others’ perception of and fantasies about it, left me feeling anything but resilient. My body doesn’t exist in the world in isolation from it. I realized that my disability, like my “giftedness,” forms a relationship with the world around me. These identities are structured by the function that expectations serve to play in how a body is imagined to exist in the world. Freud was right in suggesting that the ego is “first and foremost a body-ego” (Freud, 1923). For the visibly disabled subject, the ego is felt perhaps first and foremost at the level of the body.

The body is something that I can’t take for granted. No matter what I did or achieved in my life, I would first and foremost be a body precisely because of my disability and that is a sense of myself that I can’t take for granted. This matter of sense is important here to tarry with. Jamieson Webster becomes instructive when she suggests: “We need the body of sense, the touching of body and sense; this can only take place at the limit, which is the meaning of extension, of a not-being-able to know itself there where it encounters something beyond itself. Sense as feeling, against sense as meaning, happens at the place where we make contact with the other” (Webster, 2018). The otherness, in my case, is not merely concerning how my parents related to me as other; the other in question, perhaps the only other that matters here, is the way in which I perceived my own self, the other that I had become to myself.

Misrecognition is psychically exhausting. But, so is misrecognizing oneself. At a certain point, I realized that the more radical gesture would be to own up to and claim the body I occupied, allow it to breathe, allow it to become a person in all its fullness. If as Levinas suggested, “shame is…the fact of being riveted to oneself, the radical impossibility of fleeing oneself to hide from oneself,” then being unashamed might be about allowing oneself to be rivetted to one’s body, the radical possibility of returning to oneself after having hidden oneself for so long. I want to steer away from a liberal reading of this, as being a sign of liberatory existence or a mark of resilience. Instead, it comes out of a scene of, to repeat myself, psychic exhaustion with ableism. I want to add, as well, as a coda that in writing what I have here it might appear as though I am casting my parents in a less-than-generous light. That was never my intention. I understand them as profoundly complex persons unto themselves capable, as we all are, of both love and cruelty and every feeling in between. Instead by taking account of both them and myself, what I wanted to approach was a sense of my body as being as much a part of my person, as are the psychic wounds, both visible and invisible, that it tenuously carries. The missing body is no more missing to itself; it is a body among a host of other bodies that surround it.

References

Comay, R. (2011). Mourning sickness: Hegel and the French revolution. Stanford University Press.

Dean, T. (2014). Stumped. In Tim Dean, Steven Ruszczycky & David Squires (Eds.), Porn archive (pp. 420-440). Duke University Press.

Freud. S. (1923). The ego and the id. In James Strachey (Ed.), The standard edition of the complete psychological works of Sigmund Freud, volume XIX (1923-1925) (pp. 1-66). Vintage.

Levinas, E. (1982). De l’évasion [On escape]. Stanford University Press.

Michaels, A. (2009). The winter vault. McClelland & Stewart.

Webster, J. (2018). Conversion disorder. Columbia University Press.

Contributors

Ricky Varghese, is a psychoanalyst and writer based in Toronto. He writes about sex and death, queer porn and art, memory and memoir, and Judaism and Kerala—not always in that order. He has edited Raw: PrEP, Pedagogy, and the Politics of Barebacking (University of Regina Press, 2019) and the forthcoming Little Deaths: Politics and Psychoanalysis in the Age of Pandemics (University of Regina Press, 2025). Presently, he is also completing two monographs: The Look Back: Mourning, Melancholia, and the Madness of Loss is a study linking the experience of melancholia in the works of Sigmund Freud and Walter Benjamin, while Leave-taking: Sex, Death, Ethics is an exploration of the relationship between suicidality, late capitalism, and the death drive. His writings have appeared in publications such as the Los Angeles Review of Books, the LARB Quarterly, Porn Studies, Drain Magazine, and the Gay and Lesbian Quarterly, to name a few.

Ben Stephens, photographer, https://www.benstephensphotography.com