On Empathy or: Terms of Disclosure*
I might have been eight or nine when I first dared to solicit my mother’s empathy. In a quavering voice I said, “Mom, can’t you try to see things from my side?” Whatever we had been arguing about or whatever I had been whining about was in all likelihood wholly inconsequential but felt at the time like a ruinous matter of survival.
My mother—who had come to America following a husband whose greatest success was his infidelity, who had worked a hospital night shift and two other jobs to put this man through his MBA, who was raising two needful young kids with minimal external succor—did not look up from clipping her grocery coupons. “Not a chance.”
So this was how I learned about empathy. You fought like hell for yourself and your own, and you took no shit from others, and you never bent to meet them halfway.
On September 19, 2014, I arrived late to a show at Off Broadway. It was a seated concert, unusual for the venue, and it looked like everyone except me was white, eighty years old and blue-collar. Mary Gauthier and Sam Baker sat on stools on the stage with acoustic guitars and harmonicas. They made bad jokes that prompted compliant chuckles from their audience of scuffed retirees, and sang movingly about bricklayers and hobo kings and old couples and motels. Baker showed the audience a photo of the Arch on his iPhone, holding it up with a gnarled left hand. Years ago he’d had to relearn how to play the guitar, to accommodate his disfigured digits.
The final song was prefaced with a story that I get the feeling Baker saves for last at every show: Some friends and I were in Peru, in the 80s, during some military occupation or civil unrest and we got aboard a train for Cuzco, where Machu Picchu is. I was sitting next to a little German boy and his parents. And then we all got blown up. They died. I had a cut artery and my ears blown in. Then I lived. Baker told the story with the perfunctory haste of someone who’s worn a story thin but still feels obliged to offer it up, because he is humiliated by his survival, because he owes it to the people who died in his place.
Wayne Koestenbaum wrote an entire book of essays about humiliation. And humiliation, I think, is inextricable from empathy. We identify with shame; we recognize ourselves in it. The mortification of others forces us into visceral terms with our own vulnerable selves. In Humiliation, Koestenbaum deplores the public defamation of Eliot Spitzer, Bill Clinton and Larry Craig in their respective sex scandals. Regardless of their politics, he doesn’t “like to see them humiliated by facing trial—either in court or in the media—for the behavior of their mouths, genitals or anuses.” He empathizes with ousted politicians, however hypocritical or homophobic, as a subsidiary of his own vulnerable sexuality; if these public figures can be shamed by private inclinations the world was never meant to know, then it is frightening to think that the same could happen to any random bum, oneself perhaps, who could very well also be looking for sex in a bathroom out of loneliness or boredom or something else.
Maybe the phrase “empathize with” is inherently misleading. There is enough confusion with where to draw the line between empathy and sympathy; I think a lot of the time, for many people, the two inhabit a peripheral sphere in which they have been rendered interchangeable by disuse. Sympathy is something that happens with someone; the sympathizer says, “Well yes, I understand because one time this also happened to me, and let me now talk about myself…”
And in that respect, sympathy is accessible and inherently selfish. The sympathizer stands to gain the satisfaction in having been able to share in this trauma. Cue smug expression and guiltless exit.
The empathizer, on the other hand, engages in a selfless act. Perhaps it would be more apt to say, “empathize for,” or “empathize toward,” or perhaps to step back and expend the breath to say, I am offering empathy, I am engaging in empathy. Or maybe a better approach would be to sidestep the term completely and grasp for other words to fill that void: I see you, I am here for you, I cannot understand but I am trying nonetheless.
Being my mother’s daughter, I still harbor a latent aversion to asking empathy of others. As a kid, whenever I fell sick I was loath to let my mother know, let alone seek comfort from her; but that may have been because she was so palpably loath to cater to my grievances.
Yet the appeal for empathy seems unavoidable at the hospital or the doctor’s office; you ask a stranger to care about and diagnose your problems, sometimes self-afflicted, and find a way to fix them without shaming you too acutely in the process. Leslie Jamison talks extensively about empathy in the context of the ill and medicated body. As a medical actor, she rated med students on how well they empathized with her fictional patient, using evaluation checklist item 31: “Voiced empathy for my situation/problem.” The fictional patient might “hide behind her shame like a veil, and her med student is supposed to part the curtain.” This parting of the curtain is a responsibility that transcends academic competence, surgical adeptness and diagnostic efficacy—it is an unquantifiable effort to peel back layers of vulnerability and handle them with care, so that the patient’s emotional healing is not impeded in the process of her physical recovery. Jamison suggests:
My mother—who had come to America following a husband whose greatest success was his infidelity, who had worked a hospital night shift and two other jobs to put this man through his MBA, who was raising two needful young kids with minimal external succor—did not look up from clipping her grocery coupons. “Not a chance.”
So this was how I learned about empathy. You fought like hell for yourself and your own, and you took no shit from others, and you never bent to meet them halfway.
On September 19, 2014, I arrived late to a show at Off Broadway. It was a seated concert, unusual for the venue, and it looked like everyone except me was white, eighty years old and blue-collar. Mary Gauthier and Sam Baker sat on stools on the stage with acoustic guitars and harmonicas. They made bad jokes that prompted compliant chuckles from their audience of scuffed retirees, and sang movingly about bricklayers and hobo kings and old couples and motels. Baker showed the audience a photo of the Arch on his iPhone, holding it up with a gnarled left hand. Years ago he’d had to relearn how to play the guitar, to accommodate his disfigured digits.
The final song was prefaced with a story that I get the feeling Baker saves for last at every show: Some friends and I were in Peru, in the 80s, during some military occupation or civil unrest and we got aboard a train for Cuzco, where Machu Picchu is. I was sitting next to a little German boy and his parents. And then we all got blown up. They died. I had a cut artery and my ears blown in. Then I lived. Baker told the story with the perfunctory haste of someone who’s worn a story thin but still feels obliged to offer it up, because he is humiliated by his survival, because he owes it to the people who died in his place.
Wayne Koestenbaum wrote an entire book of essays about humiliation. And humiliation, I think, is inextricable from empathy. We identify with shame; we recognize ourselves in it. The mortification of others forces us into visceral terms with our own vulnerable selves. In Humiliation, Koestenbaum deplores the public defamation of Eliot Spitzer, Bill Clinton and Larry Craig in their respective sex scandals. Regardless of their politics, he doesn’t “like to see them humiliated by facing trial—either in court or in the media—for the behavior of their mouths, genitals or anuses.” He empathizes with ousted politicians, however hypocritical or homophobic, as a subsidiary of his own vulnerable sexuality; if these public figures can be shamed by private inclinations the world was never meant to know, then it is frightening to think that the same could happen to any random bum, oneself perhaps, who could very well also be looking for sex in a bathroom out of loneliness or boredom or something else.
Maybe the phrase “empathize with” is inherently misleading. There is enough confusion with where to draw the line between empathy and sympathy; I think a lot of the time, for many people, the two inhabit a peripheral sphere in which they have been rendered interchangeable by disuse. Sympathy is something that happens with someone; the sympathizer says, “Well yes, I understand because one time this also happened to me, and let me now talk about myself…”
And in that respect, sympathy is accessible and inherently selfish. The sympathizer stands to gain the satisfaction in having been able to share in this trauma. Cue smug expression and guiltless exit.
The empathizer, on the other hand, engages in a selfless act. Perhaps it would be more apt to say, “empathize for,” or “empathize toward,” or perhaps to step back and expend the breath to say, I am offering empathy, I am engaging in empathy. Or maybe a better approach would be to sidestep the term completely and grasp for other words to fill that void: I see you, I am here for you, I cannot understand but I am trying nonetheless.
Being my mother’s daughter, I still harbor a latent aversion to asking empathy of others. As a kid, whenever I fell sick I was loath to let my mother know, let alone seek comfort from her; but that may have been because she was so palpably loath to cater to my grievances.
Yet the appeal for empathy seems unavoidable at the hospital or the doctor’s office; you ask a stranger to care about and diagnose your problems, sometimes self-afflicted, and find a way to fix them without shaming you too acutely in the process. Leslie Jamison talks extensively about empathy in the context of the ill and medicated body. As a medical actor, she rated med students on how well they empathized with her fictional patient, using evaluation checklist item 31: “Voiced empathy for my situation/problem.” The fictional patient might “hide behind her shame like a veil, and her med student is supposed to part the curtain.” This parting of the curtain is a responsibility that transcends academic competence, surgical adeptness and diagnostic efficacy—it is an unquantifiable effort to peel back layers of vulnerability and handle them with care, so that the patient’s emotional healing is not impeded in the process of her physical recovery. Jamison suggests:
Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see: an old woman’s gonorrhea is connected to her guilt is connected to her marriage is connected to her children is connected to the days when she was a child.
What a world that would be, in which doctors demonstrated this type of thinking. They seldom have in my experience. But you are my listener now; I am entreating you, trusting you, to recognize the perpetually extending context of my affliction, to refrain from condemning me more harshly than I have myself.
C was an ex-junkie from Portland. When I knew him, he was an MFA student at Washington University, maybe thirty-four years old but much older in appearance. He revealed his condition under dubious circumstances in a dorm of nineteen-year-old girls, telling us he wanted to shower with us but first, before we partook in this activity, he needed to “disclose something.” Predatory skeeviness aside, our teenage reactions were wholly malicious. We laughed nervously. We suggested it was time for him to go home. When he was gone, the drunk fool, we proceeded to make a joke of it, telling all the people we knew who knew him. We coined derogatory nicknames. Humiliation was our prerogative. We were invincible to his plight and unapologetically cruel.
My friendship with N eventually fell apart for a number of reasons; my unwillingness to empathize was one of them.
Before it became a problem, I learned from Ken Dahl that it was more common than most people liked to acknowledge. I had just moved into a new apartment and my new roommate Marie was telling me about how probably half the people in the world have it but nobody talks about it because it’s stigmatized and also not life-threatening. I wonder these days if, upon meeting me, Marie knew something I didn’t. She pulled Monsters off her bookshelf and set it on the coffee table before me. I read the whole thing that night. Part autobiography, part deranged educational comic strip, Monsters chronicles the physical symptoms and emotional trauma of the protagonist’s condition as one relationship deteriorates and another buds. Dahl’s illustrations depict afflicted individuals as massive, walking viruses, gooey and slimy and ridden with tumors. Upon physical contact, their human consorts are morphed also into sickly blobs. Dahl’s protagonist, filled with shame and self-loathing, muses: “let’s face it: nobody wants to fuck a monster…and become a monster themselves.”
But in the end, Dahl’s protagonist finds self-acceptance as he learns just how widespread—ubiquitous, even—and manageable the disease is. Less than half of people who carry the disease suffer symptoms; there is really no 100% effective method of prevention, condoms or not; there’s no way to even track just how many people in the world have it because it is such a mercurial condition. The essential tagline of the book is: if you’re wondering whether you have it, the answer is probably yes. And it is not the end of the world.
So, thanks to Marie and Ken Dahl, by the time I was diagnosed officially—if you can call it a diagnosis, because to this day there is no surefire way to test for it—I was already aware of the statistical prevalence and physiological inconsequentiality of this skin-deep disease. It was July of 2013 and I had spent most of the summer in St. Louis working in a gallery and reveling to unhealthy excess. Now I was in Atlanta visiting my friend Leah. She drove me to North Atlanta Urgent Care (which had a logo that read more like Nurgent Care) and waited for me in the reception area. I was seen by a Dr. Julia, who was soft with dry skin and dark ringlet hair. I mumbled, “Yeah, I looked around online and it’s probably, you know.” I coughed. My eyes darted around the ceiling. Minutes later, her head emerging from between my legs, Dr. Julia said, “Yeah, that looks like it.” My blood test came out negative but we both knew that infection was the case. Her eyes crinkled sadly but she did not otherwise miss a beat. She said it is quite common and treatable. I wanted to say, yes I know, Ken Dahl told me; I felt like I had something to prove, that I had already achieved mastery over this illness that I was only beginning to know.
Dr. Julia was kind to me. She asked me if it was painful and I shrugged, meaning yes, a lot. She said it would probably never be as bad again after this. When I got out, Leah and I left and got into the car silently. I told her the results with a numb, halfhearted laugh.
“That sucks,” she said. “I’m sorry.” To this day I am grateful for Leah’s way of empathizing—by keeping it short and neutral, by being willing to know that she knew nothing, by demonstrating her compassion with actions and not patronizing, obliquely accusatory phrases.
Ken Dahl’s real name is Gabby Schulz. I do not have the luxury of a nom de plume to mask my shame.
Ironically, the night it must have happened, I had joked with the two boys in my company: “Everybody has it anyway.” We had laughed nervously; their expressions faltered only briefly before we humped on ahead into the irrevocable.
I tell myself that whichever one of the two it was, who changed my life so permanently (and I never did find out, or ask), is also deserving of empathy. He might not have known he was positive; he might have been too ashamed to bring it up. He might not have thought it was a big deal, since it might not have been a big deal in his life. I gut myself with this quest for compassion, so that I won’t gut those boys. I gut myself with this quest for compassion, because my moral compass has not turned out to be any straighter than either of theirs.
I think about and regret my abominable treatment of C. I was ignorant and young, and when you are ignorant and young you disdain those who have dug their own graves. You are invincible to the shameful, foolhardy plights of others until one burning morning at 5 am, holding a mirror under your crotch, you are suddenly not.
Since kind Dr. Julia only prescribed me a single dose of valacyclovir, I had to obtain a long-term—lifelong, I should say—prescription when I returned to St. Louis. I sought this from the doctors at my university’s student health center, despite having previously had only negative experiences there. For instance: my freshman year of college I stumbled into the student health center, seeking help for something unrelated to sexual health. Dr. W ignored my specific requests and, eyeing me coldly down her nose, insisted that I be tested immediately for HIV. I told her, honestly, that I had already tested negative two days before in the ER when they took my blood for drug tests. Dr. W did not believe me; she told me in so many admonishments that I was irresponsible, out of control, living the kind of life that would certainly lead to AIDS. She and I had discussed nothing about my sex life. I allowed her to send me to the lab for the redundant blood test and she shooed me out with a pamphlet on alcoholism in my hand.
On checklist item 31, she would have received an unsatisfactory.
So now I had returned, to see a Dr. C who had just weeks ago offered me chipper advice about birth control options, all the while heaping praise—“so cute!”—upon whatever I had been wearing that day. But this time around, Dr. C came in looking aloof. I knew, with what felt like utter conviction, what she must be thinking--this girl just went on birth control and now she has an incurable disease. I wonder at the correlation!
There were questions I wanted to ask: how does one live with this condition? Does one join a support group? Is one allowed to kiss people? How does one disclose this to the person one is about to fuck? Does one ever love again?
Dr. C’s lips stayed tight and thin. Perhaps if I had relinquished my guard and extended a heartfelt plea for guidance, perhaps if when she was taking excruciating swabs from my blistering parts I had voiced my pain and confessed, this mass of shame is crushing my spine--then she might have softened her touch and stopped averting her gaze. But instead I sucked in my breath and found myself yearning for the soft, crinkling eyes of Dr. Julia.
Ever since he got blown up in the train, Sam Baker has had tinnitus. I cannot imagine what this is like. I cannot imagine what it is like to be not in full control of your body and senses. I cannot imagine what it is to survive a child, a family, who died inches away from you. I have not experienced this trauma, the visible kind, the bereaving kind, that leaves you with a ringing in your ears, an unfamiliar body and an interminable guilt.
What I can speak for is how it feels to carry something constant and inescapable: to have a burden you cannot ignore or discard. And I can speak for letting that burden fuck you over and having no one to blame but yourself. Exactly one year before seeing Sam Baker at Off Broadway, I was there seeing Starfucker. I mean it, one year to the date, September 19. This is probably, actually, the principal reason I went to the Sam Baker show. This was where I had first met P.
Though we did not hit it off that night, eventually we did and by October we were having the kind of sex that would soon lead to a committed relationship. I thought very specifically about his character: He is one of the most empathetic people I have ever met. In retrospect, maybe it was sympathy I was thinking about. We were both newly recovering addicts. He seemed to take in stride my history with uppers and research chemicals (he fell more into the camp of opioids and old-fashioned booze), as well as my openness about a spotty venereal repertoire that was rooted in a fatalistic insecurity and had implicated more than a few people in his associated friend circle.
But those revelations aside, I didn’t tell P about my HSV until January, three months into our relationship. When I did I lied, telling him that I had just found out about it and not that I had known about it since July. I was nauseous with guilt. He was calm and understanding. He said, “I want to be with you.” He said he was willing to take the risk. I felt as if a great weight had been lifted. I thought P deserved the Nobel Peace Prize for empathy.
Sam Baker holds off on divulging his trauma until the very last minute; but ultimately he does offer it up, before time has run out. At every show, in every studio recording, however redundant it has become for him to recount, he does anyway because he feels accountable for letting every new audience know. P was my new audience, and I waited until the time to disclose had passed. So eventually, justifiably, shit hit the fan. It was April and I was studying abroad in Florence. P had waited half a year to tell me over Skype that, early on in November, he had found a bottle of acyclovir in my room. He said he still loved me. He said he was furious with me. He said he felt betrayed. He said he was glad I hadn’t told him before we started having sex because he probably would have never pursued me at all.
To some, or many, my treatment of P may seem indefensible; so instead I will speak about the fraught place that HSV occupies in the mores I know and inhabit. In middle school, there are units on sexual health and addiction and mental illness, and the kids think—they are conditioned to think--never me, I am above that, those people’s problems. The sexual health units are taught with an undercurrent of condescension; they address only preventative measures, use condoms or else, and nothing is said about the other side, the zone of After Having Fucked Up. Because once you are relegated to that zone you are left to die, in some cases literally: unworthy of the curriculum’s consideration.
Ken Dahl’s narrator, before his diagnosis, watches a Valtrex commercial and thinks: “Ew. How dare these people think they still have a right to have sex? First they were dumb enough to catch herpes, and now they want more opportunities to infect other people too? Fuck that! How irresponsible! How inconsiderate! How disgusting.” Disgusting. A belligerent and dehumanizing descriptor to slap on another person, and yet I don’t think this is an uncommon attitude. Once you are positive, you have an obligation to be out of the game—or so a system of hushed, structural shame directs us to believe. I believed this when P and I were becoming involved. I did not know how to bridge the gap between what was right and what was palatable. I was what you could call an HSV virgin, and P was my first victim, felled before I knew how to navigate my own humiliation. The textbooks had never covered this: what now? My dishonesty toward P reflected a lack of empathy on my part; the reasons behind what I did, my fearful motivations, my coercing silence, reflected something of a broader cultural landscape. Perhaps you, reader, still won’t find it in yourself to empathize with—or for, or towards—my transgressions. I can accept that. As a child of our sexual culture, I can hardly find the empathy to spare on myself.
People draw parallels, however ill-conceived, between HSV and that monumental affliction born of the 80s, HIV. These are two sinful consequences that make their appearance and refuse to leave, that resist extermination by way of a quick clinic visit and casual regimen of antibiotics. But the two are inherently incompatible in their reception and impact, for the obvious reason that HSV is essentially a skin disorder, whereas HIV becomes AIDS, becomes death.
Jamison fixates a lot on the idea of the tubercolic beauty, the melancholic romantic, the divine self-harmer, the wounded (or post-wounded) woman searching for feeling. To put it crudely, HIV aligns with the trauma of Jamison’s doomed heroine. There is an outlet for the moving and transcendent, for as Jamison writes, “Sadness was interesting and sickness was its handmaiden, providing not only cause but also symptoms and metaphors...” The expiring creature is interesting, elicits empathy, because death is final and absolving.
I feel less exploitative in saying this because the image of the disease has already been exploited and propagated to far greater lengths: Tom Hanks in Philadelphia, McConaughey in Dallas Buyers Club, Wojnarowicz’s portrait of an emaciated Hujar, Frare’s famed photo of David Kirby on his deathbed, Felix Gonzales-Torres’ 175 pounds of candy in the corner, the weight of his lover before he withered into death. HIV/AIDS has a face and it is tragic. There are aggressive pharmaceutical treatments today, of course, and it is more than feasible for a person to live with HIV; but the disease has two decades of history to pull at the unaffected outsider’s heartstrings. Loss and compassion. Death and redemption.
HSV, on the other hand, spells invisibility and shame. HSV is a humiliating disease, flippantly called the gift that keeps giving, the butt of jokes on the Daily Show and in Judd Apatow films, the one gross thing you want to make sure you never have. Which is doubly ironic, since so many people do have it. It is physically harmless (given that one has the resources to treat it) but socially, emotionally, interpersonally injurious.
Granted, it seems like the attitude toward HSV is undergoing a paradigm shift. Ever since I started telling more people that I am HSV-positive, in the past couple months, I have been met with acceptance: everybody has it, it’s not a big deal, you will love again. But at the same time, I can’t divorce myself from what P said: if I had told him at the outset, we would never have been together. My position was such that I unavoidably solicited him to meet me halfway, to bend to a point of understanding, self-sacrifice and exposure; and, had I been honest, his instinct for self-preservation would have prevented him from doing so. Acceptance from a friend does not translate into that from a lover. There was no winning, from the beginning.
My feelings on Leslie Jamison are conflicted, perhaps because I identify with her grievances so closely. And because I can relate to her need to tell us that yes, she drinks to excess, yes, she has slept around, yes, she is hyper-literate and hyper-educated, yes, she has traveled the world dangerously, yes, she has something to run away from, and yes, she is full of a need for something she cannot fully express—because I can relate to all of this, it feels self-indulgent and trite. It is almost as if, in my case, sympathy and empathy are at odds. I empathize with the person who has suffered something I have never experienced: bereavement, physical disfigurement, homelessness, persecution. But, having been raised on a diet of obsessive accountability and self-shame, give me someone to sympathize with and I will say: not a chance.
When P left—that is, when I kicked him out of the home we shared, first by asking and later by screaming—he said: “At least I’ve never lied to you.” It was September 12, exactly one week before the Sam Baker concert.
The lie—it had never been a thing that he was going to get over, my betrayal. In 1884, before divorce was kosher, Gertrude Elizabeth Blood was granted a judicial separation from Lord Colin Campbell on the grounds of cruelty; he had knowingly infected her with syphilis or something of the sort. I had knowingly, potentially, infected P with something of the sort. He never showed any symptoms, but it was the principle of the omission. He stayed with me for five months after the confrontation on Skype, before filing for his own judicial separation.
This manifested in its own brand of cruelty: increasingly erratic and unpredictable behavior. P never hit me, but he hit things around me and I felt an increasing need to muster the initiative to remove myself from his line of fire. Growing up, in my household, according to my mother—domestic violence was something that women let happen to them, suffering was something that people let happen to them if they were weak, lazy, stubborn or plain stupid.
So I had him leave, and he said to me: I may have fucked up and be fucked up, but you have problems, too.
I suppose all there was left to do was apologize to him again. In the cooling absence of his furniture, I was left thinking of the final scene in Kids, a film wholly devoid of basic empathy, where a naked Casper wakes up after having raped an HIV-positive Chloe Sevigny and says to the camera: “Jesus Christ, what happened?”
Works Consulted
Baker, Sam and Mary Gauthier. “An Evening with Mary Gauthier and Sam Baker.” Off Broadway, St. Louis, MO. 19 September 2014. Live performance.
Dahl, Ken. Monsters. Jackson Heights: Secret Acres, 2009. Print.
Jamison, Leslie. “The Empathy Exams.” The Empathy Exams. Minneapolis: Graywolf, 2014. 1-26. Print.
Kids. Dir. Larry Clark. Writer Larry Clark, Harmony Korine and Jim Lewis. Miramax, 1995. Film.
Koestenbaum, Wayne. Humiliation. New York: Picador, 2011. Print.
C was an ex-junkie from Portland. When I knew him, he was an MFA student at Washington University, maybe thirty-four years old but much older in appearance. He revealed his condition under dubious circumstances in a dorm of nineteen-year-old girls, telling us he wanted to shower with us but first, before we partook in this activity, he needed to “disclose something.” Predatory skeeviness aside, our teenage reactions were wholly malicious. We laughed nervously. We suggested it was time for him to go home. When he was gone, the drunk fool, we proceeded to make a joke of it, telling all the people we knew who knew him. We coined derogatory nicknames. Humiliation was our prerogative. We were invincible to his plight and unapologetically cruel.
My friendship with N eventually fell apart for a number of reasons; my unwillingness to empathize was one of them.
Before it became a problem, I learned from Ken Dahl that it was more common than most people liked to acknowledge. I had just moved into a new apartment and my new roommate Marie was telling me about how probably half the people in the world have it but nobody talks about it because it’s stigmatized and also not life-threatening. I wonder these days if, upon meeting me, Marie knew something I didn’t. She pulled Monsters off her bookshelf and set it on the coffee table before me. I read the whole thing that night. Part autobiography, part deranged educational comic strip, Monsters chronicles the physical symptoms and emotional trauma of the protagonist’s condition as one relationship deteriorates and another buds. Dahl’s illustrations depict afflicted individuals as massive, walking viruses, gooey and slimy and ridden with tumors. Upon physical contact, their human consorts are morphed also into sickly blobs. Dahl’s protagonist, filled with shame and self-loathing, muses: “let’s face it: nobody wants to fuck a monster…and become a monster themselves.”
But in the end, Dahl’s protagonist finds self-acceptance as he learns just how widespread—ubiquitous, even—and manageable the disease is. Less than half of people who carry the disease suffer symptoms; there is really no 100% effective method of prevention, condoms or not; there’s no way to even track just how many people in the world have it because it is such a mercurial condition. The essential tagline of the book is: if you’re wondering whether you have it, the answer is probably yes. And it is not the end of the world.
So, thanks to Marie and Ken Dahl, by the time I was diagnosed officially—if you can call it a diagnosis, because to this day there is no surefire way to test for it—I was already aware of the statistical prevalence and physiological inconsequentiality of this skin-deep disease. It was July of 2013 and I had spent most of the summer in St. Louis working in a gallery and reveling to unhealthy excess. Now I was in Atlanta visiting my friend Leah. She drove me to North Atlanta Urgent Care (which had a logo that read more like Nurgent Care) and waited for me in the reception area. I was seen by a Dr. Julia, who was soft with dry skin and dark ringlet hair. I mumbled, “Yeah, I looked around online and it’s probably, you know.” I coughed. My eyes darted around the ceiling. Minutes later, her head emerging from between my legs, Dr. Julia said, “Yeah, that looks like it.” My blood test came out negative but we both knew that infection was the case. Her eyes crinkled sadly but she did not otherwise miss a beat. She said it is quite common and treatable. I wanted to say, yes I know, Ken Dahl told me; I felt like I had something to prove, that I had already achieved mastery over this illness that I was only beginning to know.
Dr. Julia was kind to me. She asked me if it was painful and I shrugged, meaning yes, a lot. She said it would probably never be as bad again after this. When I got out, Leah and I left and got into the car silently. I told her the results with a numb, halfhearted laugh.
“That sucks,” she said. “I’m sorry.” To this day I am grateful for Leah’s way of empathizing—by keeping it short and neutral, by being willing to know that she knew nothing, by demonstrating her compassion with actions and not patronizing, obliquely accusatory phrases.
Ken Dahl’s real name is Gabby Schulz. I do not have the luxury of a nom de plume to mask my shame.
Ironically, the night it must have happened, I had joked with the two boys in my company: “Everybody has it anyway.” We had laughed nervously; their expressions faltered only briefly before we humped on ahead into the irrevocable.
I tell myself that whichever one of the two it was, who changed my life so permanently (and I never did find out, or ask), is also deserving of empathy. He might not have known he was positive; he might have been too ashamed to bring it up. He might not have thought it was a big deal, since it might not have been a big deal in his life. I gut myself with this quest for compassion, so that I won’t gut those boys. I gut myself with this quest for compassion, because my moral compass has not turned out to be any straighter than either of theirs.
I think about and regret my abominable treatment of C. I was ignorant and young, and when you are ignorant and young you disdain those who have dug their own graves. You are invincible to the shameful, foolhardy plights of others until one burning morning at 5 am, holding a mirror under your crotch, you are suddenly not.
Since kind Dr. Julia only prescribed me a single dose of valacyclovir, I had to obtain a long-term—lifelong, I should say—prescription when I returned to St. Louis. I sought this from the doctors at my university’s student health center, despite having previously had only negative experiences there. For instance: my freshman year of college I stumbled into the student health center, seeking help for something unrelated to sexual health. Dr. W ignored my specific requests and, eyeing me coldly down her nose, insisted that I be tested immediately for HIV. I told her, honestly, that I had already tested negative two days before in the ER when they took my blood for drug tests. Dr. W did not believe me; she told me in so many admonishments that I was irresponsible, out of control, living the kind of life that would certainly lead to AIDS. She and I had discussed nothing about my sex life. I allowed her to send me to the lab for the redundant blood test and she shooed me out with a pamphlet on alcoholism in my hand.
On checklist item 31, she would have received an unsatisfactory.
So now I had returned, to see a Dr. C who had just weeks ago offered me chipper advice about birth control options, all the while heaping praise—“so cute!”—upon whatever I had been wearing that day. But this time around, Dr. C came in looking aloof. I knew, with what felt like utter conviction, what she must be thinking--this girl just went on birth control and now she has an incurable disease. I wonder at the correlation!
There were questions I wanted to ask: how does one live with this condition? Does one join a support group? Is one allowed to kiss people? How does one disclose this to the person one is about to fuck? Does one ever love again?
Dr. C’s lips stayed tight and thin. Perhaps if I had relinquished my guard and extended a heartfelt plea for guidance, perhaps if when she was taking excruciating swabs from my blistering parts I had voiced my pain and confessed, this mass of shame is crushing my spine--then she might have softened her touch and stopped averting her gaze. But instead I sucked in my breath and found myself yearning for the soft, crinkling eyes of Dr. Julia.
Ever since he got blown up in the train, Sam Baker has had tinnitus. I cannot imagine what this is like. I cannot imagine what it is like to be not in full control of your body and senses. I cannot imagine what it is to survive a child, a family, who died inches away from you. I have not experienced this trauma, the visible kind, the bereaving kind, that leaves you with a ringing in your ears, an unfamiliar body and an interminable guilt.
What I can speak for is how it feels to carry something constant and inescapable: to have a burden you cannot ignore or discard. And I can speak for letting that burden fuck you over and having no one to blame but yourself. Exactly one year before seeing Sam Baker at Off Broadway, I was there seeing Starfucker. I mean it, one year to the date, September 19. This is probably, actually, the principal reason I went to the Sam Baker show. This was where I had first met P.
Though we did not hit it off that night, eventually we did and by October we were having the kind of sex that would soon lead to a committed relationship. I thought very specifically about his character: He is one of the most empathetic people I have ever met. In retrospect, maybe it was sympathy I was thinking about. We were both newly recovering addicts. He seemed to take in stride my history with uppers and research chemicals (he fell more into the camp of opioids and old-fashioned booze), as well as my openness about a spotty venereal repertoire that was rooted in a fatalistic insecurity and had implicated more than a few people in his associated friend circle.
But those revelations aside, I didn’t tell P about my HSV until January, three months into our relationship. When I did I lied, telling him that I had just found out about it and not that I had known about it since July. I was nauseous with guilt. He was calm and understanding. He said, “I want to be with you.” He said he was willing to take the risk. I felt as if a great weight had been lifted. I thought P deserved the Nobel Peace Prize for empathy.
Sam Baker holds off on divulging his trauma until the very last minute; but ultimately he does offer it up, before time has run out. At every show, in every studio recording, however redundant it has become for him to recount, he does anyway because he feels accountable for letting every new audience know. P was my new audience, and I waited until the time to disclose had passed. So eventually, justifiably, shit hit the fan. It was April and I was studying abroad in Florence. P had waited half a year to tell me over Skype that, early on in November, he had found a bottle of acyclovir in my room. He said he still loved me. He said he was furious with me. He said he felt betrayed. He said he was glad I hadn’t told him before we started having sex because he probably would have never pursued me at all.
To some, or many, my treatment of P may seem indefensible; so instead I will speak about the fraught place that HSV occupies in the mores I know and inhabit. In middle school, there are units on sexual health and addiction and mental illness, and the kids think—they are conditioned to think--never me, I am above that, those people’s problems. The sexual health units are taught with an undercurrent of condescension; they address only preventative measures, use condoms or else, and nothing is said about the other side, the zone of After Having Fucked Up. Because once you are relegated to that zone you are left to die, in some cases literally: unworthy of the curriculum’s consideration.
Ken Dahl’s narrator, before his diagnosis, watches a Valtrex commercial and thinks: “Ew. How dare these people think they still have a right to have sex? First they were dumb enough to catch herpes, and now they want more opportunities to infect other people too? Fuck that! How irresponsible! How inconsiderate! How disgusting.” Disgusting. A belligerent and dehumanizing descriptor to slap on another person, and yet I don’t think this is an uncommon attitude. Once you are positive, you have an obligation to be out of the game—or so a system of hushed, structural shame directs us to believe. I believed this when P and I were becoming involved. I did not know how to bridge the gap between what was right and what was palatable. I was what you could call an HSV virgin, and P was my first victim, felled before I knew how to navigate my own humiliation. The textbooks had never covered this: what now? My dishonesty toward P reflected a lack of empathy on my part; the reasons behind what I did, my fearful motivations, my coercing silence, reflected something of a broader cultural landscape. Perhaps you, reader, still won’t find it in yourself to empathize with—or for, or towards—my transgressions. I can accept that. As a child of our sexual culture, I can hardly find the empathy to spare on myself.
People draw parallels, however ill-conceived, between HSV and that monumental affliction born of the 80s, HIV. These are two sinful consequences that make their appearance and refuse to leave, that resist extermination by way of a quick clinic visit and casual regimen of antibiotics. But the two are inherently incompatible in their reception and impact, for the obvious reason that HSV is essentially a skin disorder, whereas HIV becomes AIDS, becomes death.
Jamison fixates a lot on the idea of the tubercolic beauty, the melancholic romantic, the divine self-harmer, the wounded (or post-wounded) woman searching for feeling. To put it crudely, HIV aligns with the trauma of Jamison’s doomed heroine. There is an outlet for the moving and transcendent, for as Jamison writes, “Sadness was interesting and sickness was its handmaiden, providing not only cause but also symptoms and metaphors...” The expiring creature is interesting, elicits empathy, because death is final and absolving.
I feel less exploitative in saying this because the image of the disease has already been exploited and propagated to far greater lengths: Tom Hanks in Philadelphia, McConaughey in Dallas Buyers Club, Wojnarowicz’s portrait of an emaciated Hujar, Frare’s famed photo of David Kirby on his deathbed, Felix Gonzales-Torres’ 175 pounds of candy in the corner, the weight of his lover before he withered into death. HIV/AIDS has a face and it is tragic. There are aggressive pharmaceutical treatments today, of course, and it is more than feasible for a person to live with HIV; but the disease has two decades of history to pull at the unaffected outsider’s heartstrings. Loss and compassion. Death and redemption.
HSV, on the other hand, spells invisibility and shame. HSV is a humiliating disease, flippantly called the gift that keeps giving, the butt of jokes on the Daily Show and in Judd Apatow films, the one gross thing you want to make sure you never have. Which is doubly ironic, since so many people do have it. It is physically harmless (given that one has the resources to treat it) but socially, emotionally, interpersonally injurious.
Granted, it seems like the attitude toward HSV is undergoing a paradigm shift. Ever since I started telling more people that I am HSV-positive, in the past couple months, I have been met with acceptance: everybody has it, it’s not a big deal, you will love again. But at the same time, I can’t divorce myself from what P said: if I had told him at the outset, we would never have been together. My position was such that I unavoidably solicited him to meet me halfway, to bend to a point of understanding, self-sacrifice and exposure; and, had I been honest, his instinct for self-preservation would have prevented him from doing so. Acceptance from a friend does not translate into that from a lover. There was no winning, from the beginning.
My feelings on Leslie Jamison are conflicted, perhaps because I identify with her grievances so closely. And because I can relate to her need to tell us that yes, she drinks to excess, yes, she has slept around, yes, she is hyper-literate and hyper-educated, yes, she has traveled the world dangerously, yes, she has something to run away from, and yes, she is full of a need for something she cannot fully express—because I can relate to all of this, it feels self-indulgent and trite. It is almost as if, in my case, sympathy and empathy are at odds. I empathize with the person who has suffered something I have never experienced: bereavement, physical disfigurement, homelessness, persecution. But, having been raised on a diet of obsessive accountability and self-shame, give me someone to sympathize with and I will say: not a chance.
When P left—that is, when I kicked him out of the home we shared, first by asking and later by screaming—he said: “At least I’ve never lied to you.” It was September 12, exactly one week before the Sam Baker concert.
The lie—it had never been a thing that he was going to get over, my betrayal. In 1884, before divorce was kosher, Gertrude Elizabeth Blood was granted a judicial separation from Lord Colin Campbell on the grounds of cruelty; he had knowingly infected her with syphilis or something of the sort. I had knowingly, potentially, infected P with something of the sort. He never showed any symptoms, but it was the principle of the omission. He stayed with me for five months after the confrontation on Skype, before filing for his own judicial separation.
This manifested in its own brand of cruelty: increasingly erratic and unpredictable behavior. P never hit me, but he hit things around me and I felt an increasing need to muster the initiative to remove myself from his line of fire. Growing up, in my household, according to my mother—domestic violence was something that women let happen to them, suffering was something that people let happen to them if they were weak, lazy, stubborn or plain stupid.
So I had him leave, and he said to me: I may have fucked up and be fucked up, but you have problems, too.
I suppose all there was left to do was apologize to him again. In the cooling absence of his furniture, I was left thinking of the final scene in Kids, a film wholly devoid of basic empathy, where a naked Casper wakes up after having raped an HIV-positive Chloe Sevigny and says to the camera: “Jesus Christ, what happened?”
Works Consulted
Baker, Sam and Mary Gauthier. “An Evening with Mary Gauthier and Sam Baker.” Off Broadway, St. Louis, MO. 19 September 2014. Live performance.
Dahl, Ken. Monsters. Jackson Heights: Secret Acres, 2009. Print.
Jamison, Leslie. “The Empathy Exams.” The Empathy Exams. Minneapolis: Graywolf, 2014. 1-26. Print.
Kids. Dir. Larry Clark. Writer Larry Clark, Harmony Korine and Jim Lewis. Miramax, 1995. Film.
Koestenbaum, Wayne. Humiliation. New York: Picador, 2011. Print.
*Author asked to remain anonymous