At age eight I receive the award Entertainer of the Year Runner-Up for a jazz-gymnastics routine I perform to the disco song, “Give Me the Night.” My hair is short and I’m barefoot and bare-legged in a pale blue leotard with a red and white zigzag down the side. On stage I do disco moves with cartwheels, front flips, round-offs and neck-rolls. My small hands land firmly on the mat and shoot up in the air, fingers spread in jazz-hands. I am exuberant.
In second-grade I live on Bonbrook Drive in Wabash, Indiana, in a friendly neighborhood with wide streets and large trees. I love to ride my pink and white bike with a banana seat and tall handlebars I reach up to hold. I ride it after school and on the weekends around the neighborhood, experiencing new pleasures of exploration and independence.
My best friend Shelly and I are in a ballet class together. I become impatient with what I think is her bad dancing and ask my mom for private lessons. A few months into my private ballet class my knees swell, and the swelling doesn’t go down. My mom takes me to a doctor. I’m diagnosed with juvenile rheumatoid arthritis, a disease of the auto-immune system that is potentially crippling. Your body produces antibodies that attack the body, in particular the cells that line the joints. At the time, I don’t know this; I just know I have to stop taking ballet and gymnastics.
I’m in sixth grade, and my pediatric rheumatologist decides I should get gold shots, an old treatment for arthritis that contains actual gold. Twice my mom takes me to a small office where the glittering liquid is injected in my arm. Not long after the second shot, my body stops making red blood cells. Doctor P calls this Aplastic Anemia. For a year, I take cortisone in order to get my bones to produce red blood cells; I also need monthly red blood transfusions. The prednisone makes me retain water, and my face puffs out into a moon. I am embarrassed at school about my fat face. My mom and I go to the Children’s Hospital in Indianapolis once a month where I receive blood transfusions over the course of a year until the drug, Cytoxan, which has its own potential scary side effects, shocks my system into producing red blood cells again. My mom sits with me in little white hospital emergency rooms for four hours each time, which is the length of the infusion. She brings along our little black and white television. It has a messed-up antenna, so when the reception is bad, the screen turns into waves of horizontal lines and we just listen. When my mom leaves the room, she comes back with ice cream sandwiches for us.
Frida Kahlo began painting at age eighteen on the full body cast she wore for three months after a bus collided with her trolley car. In this accident, an iron handrail pierced her abdomen and uterus, and she suffered a broken spinal column, broken collarbone, ribs and pelvis, eleven fractures in her right leg, a crushed right foot, and a dislocated shoulder. The story goes that a bag of gold dust of an artisan next to her burst open, and gold covered her hurt body as she lay in the street.
I have bone-marrow biopsies to help the doctors determine why I’m not making red blood cells. When the doctor inserts the long needle into my thigh bone, I feel an intense shooting pain from my leg throughout my body. My nurse holds one of my hands. and my mom holds the other one and talks to me to calm me down. My dad can’t stay in the room because it’s too hard for him to hear me cry in pain. At home, my mom makes healthy meals, and I’m not allowed junk food snacks. But when she picks me up from school to take me to see my doctor in Indianapolis, she always brings McDonalds for lunch as a treat. When I am eleven and in the hospital for a medical procedure, my friend B visits me, and we share a 20-piece Chicken McNuggets. I eat more of them than he does and feel bad about it; at age eleven I already think as a girl I should eat less than a boy. After we eat, he and I play Dungeons and Dragons on my hospital bed,
Later when B and I are thirteen and at a basketball game sitting at the top of the old Indiana gymnasium, he asks softly, “can I hold your hand?” I tell him I’m not allowed. (My older sister was recently in trouble with my dad for holding a boy’s hand at a football game.) A few minutes later B says are you sure, and I say yes, I’m sure. (I’m not sure.) The next four years I have a crush on him. Our sophomore year, he’s my Biology partner, which makes me nervous every day. I have hand surgery that year. The tendons are cut and straightened to reduce the swelling and deformity. When the surgeon describes the hand splint I’ll have to wear after the surgery, I cry. It sounds awful—embarrassing. After the surgery, my hand is encased with a big splint with rubber bands holding up each of my fingers. In Biology class, mortified, I keep my weird splinted-hand hidden under our lab table as much as possible.
Despite my reluctance at age twelve to hold the hand of B in the Indiana gym, I’m a hand-holder at heart—probably because my mom holds hands with me all the time as I grow up. In my first relationship at age twenty, I happily hold hands with my boyfriend. My second male partner, S, doesn’t like to hold my hand in public. Affection is uncomfortable for him—it’s embarrassing. He’s a gentle man, so I wonder if holding hands makes him feel weak, not masculine. When we run into people we know, he drops my hand. This makes me feel hurt. It becomes a conversation that never really goes anywhere. D, the first woman I hold hands with, has lovely soft small hands. My next girlfriend, L, and I hold hands all the time. This is new for her. She says she’s never done this with someone before. Her hands are long, thin, brown from the sun, strong and agile; she uses them to fix bikes, cook, draw. I love looking at her hands and feel lucky to get to hold them.
In high school computer class, I’m called out into the hall where the Superintendent of Schools tells me she needs to drive me home. It is 1988, the Fall semester of my junior year in a small Indiana town. I don’t ask her questions at any point, feeling something bad has happened and she’s not the one to tell me. I walk into my house and in the living room is our church minister and my dad, who is crying. Standing across from me, he says your mom has died. She choked on food in cafeteria at the elementary school where she teaches first grade, and she couldn’t be saved. I cry with him but I’m in shock. It isn’t real. I have a vague sense I should prepare for what comes next. I walk up the stairs in our house to my bathroom where I get out a washcloth, put it under warm water, and with soap I wash my face carefully, removing all my makeup—powder, pink eye shadow, blue eyeliner, electric blue mascara. My dad comes in, stands and watches me do this, silently.
When I am twenty and in my first relationship, my boyfriend, N, wants to help me mourn the sudden loss of my mom. I’m stuck in the stage of extreme grief about her death. I’ve had no therapy or help with processing her death from anyone. Whenever I talk about her, I immediately begin crying, overcome with intense sadness. N suggests I think of good memories about her, remember her with happiness, not sadness. This sounds nice, like a good idea. I tell N she liked to get us ice cream sandwiches, so he brings me an ice cream sandwich and asks me to tell him stories about her. I am touched and appreciative of this.
Because N experienced emotional and physical abuse as a child, when I’m distant or disapproving, he becomes scared I don’t love him enough and that he’s losing me—or will. Sometimes in these moments, he becomes angry, emotionally abusive, yells and says mean things; occasionally, he is physically abusive and breaks thing, punches the wall, grabs me, holds me down so I don’t walk away from the fight. One time, my neighbor knocks on the door because she hears him yelling and me crying and wants to interrupt and make sure I’m okay. While I appreciate her concern, I’m embarrassed. N always apologies and cries after these episodes; he’s sad and mad at himself for losing control. Initially, when this happens, I don’t understand what’s going on. I’ve never seen or experienced this kind of behavior and am simultaneously afraid of him and sorry for him. I’m unable to reconcile this angry person with my loving partner. I’m confused. I have no experience with abuse and don’t know what to do—for him or for me. I don’t talk to my friends or family about it; I’m a feminist and feel ashamed to be in this dynamic with a boyfriend. I have not recovered from the trauma of losing my mom, and despite the sadness and fear I feel in these moments, I’m not emotionally equipped to leave and lose N and the relationship.
The same year I begin teaching high school in Tucson, I slip and fall on the concrete floor of our house and break my hip. I’m twenty-three, but my bones are brittle because of the cortisone I took for my aplastic anemia. After surgery, I’m stuck on the sofa for a long time and use a walker for a few months. N helps me on and off the toilet, in and out of the bathtub. He drives me to the school and picks me up. We watch My So-Called Life together and cry. At one point, he says something mean; with my good leg, I kick over the coffee table, and everything crashes to the floor. We’re both frustrated and losing patience with the healing process.
When we break up years later because I don’t want to marry him, I stay in bed for days and cry endlessly. I imagine he thinks this means I want to stay together—I don’t. I’m devastated about all the sad, hard things over the last ten years, about all the different kinds of loss. I’m sad for both of us. After I move into my own house, I’m relieved and happy to be there and be alone, but I spend a good amount of time crying, missing his presence and friendship. I’m determined to work through all the stages of grief about this loss. And I do.
In my early thirties, out of the 10-year relationship with N, I discover Pilates and casual sex. For the first time since childhood I feel in control of my body. I’m taking a new drug for my arthritis, Remicaid, and it feels like my arthritis is gone. This drug, called a biologic, has mouse protein in it. I receive a three-hour infusion of it every three months. I’m going to Pilates class twice a week, and after a year, I’m in Advanced Pilates. The teacher is a calm older woman with a white bob haircut who used to be a dancer. I love following her lead through all the movements. It feels like I’m in dance class again. My arms and core muscles become strong. I feel powerful and sexy. I seek out other people’s bodies and pleasure.
I have a new best friend who shows me the ropes of casual sex. C and I cross paths because we’re connected to a young-man poet we both like; Tucson is a small place, and he’s notorious; women across town bond over his irresponsible romantic gestures. C and I become close, and get side-by-side shot-gun apartments in old adobe four-plex downtown. An artist from Detroit, C is in Tucson for a corporate job she hates, which is pre-teen girl product design. Outside of her job, she designs and makes cool clothes; her living room is filled with thread and fabric—gold, deep red, black velvet, and a clothes-racks and an enormous table. C is red-headed with green eyes, foul-mouthed, funny, and has a deep loud laugh. The only thing in her freeze is a bottle of vodka. I want to be like her. We share our life stories with one another, watch Sex and the City together, go to the little Tucson bars. I admire how C pursues pretty men like men pursue pretty women.
I try to follow her lead and begin to make first moves with men; I don’t hesitate to ask them to come to my place, into my bedroom, do this or that with me and to me. I take risks, am fearless and exuberant. Once again in my life I’m Entertainer-of-the-Year Runner-up. I eventually realize I’m not good at casual intimacy like she is, or appears to be, but I’ve become comfortable in my body, which is a feeling I’ve missed.
In my seventh-year as an high school English teacher, I begin working on a master’s degree. My grad-school advisor, a male professor around my same age—early 30s, is professionally ambitious and an intense teacher. He’s one of those young professors who hangs out with his grad students, meets up with them at bars and music shows, and although he’s married, is having sex with one of his students, one of his advisees. At the time, I hear the rumors, and later when its confirmed, I’m not surprised. There’s an expectation among his advisees we should keep quiet, protect him and his position, which I do, but don’t feel good about. It’s confusing. Unlike some of the older tenured-professors, he’s attentive to us and our work. He seeks to form us in his academic image, so any success or failure of ours is his. The feedback he gives me about my work is harsh. The way he does it feels punishing. But I take it because I want to become a better writer, or this is what I tell myself. I’m an adult with life experience, so I think I have clarity about this dynamic. When I deviate from his direction and do an ambitious presentation on the language of paradox and ambivalence in Judith Butler’s Gender Trouble, which I’m proud of, he won’t engage with me about it in class and later reprimands me for not doing as he told me, which is a more succinct close-reading. I won’t improve if I don’t listen to his direction he tells me over a dinner.
When I’m applying to PhD programs, he gives me advice for when I go on the job market in the future. One piece of advice is that when I interview, I should try to hide my hands because they make me look older than I am. I know he means because they look arthritic. When he tells me this, I say nothing. I wonder if he’s right. This advice and his matter-of-fact tone relaying it only later strikes me as horrible. It makes me sad that academia, like other institutions under capitalism, prefers the young, healthy and compliant.
When I am working on a Ph.D. in Los Angeles, a new grad-school friend tells me about a debilitating disease she has, which she rarely talks about. She doesn’t tell anyone in her program about it—her professors, dissertation advisor, classmates. Understandably, she’s afraid this will be used against her. She confides in me because knows that I know sickness can be a problem in grad school, where it feels like it’s the young and healthy who make it; they’re the chosen ones by the faculty and most desirable ones on the academic job market. When she becomes pregnant, a happy but not easy decision, she is chastised by a professor about the detrimental effect this will have on her academic career. One day when we are together, she tells me about how it feels to have her disease and a child; she says before she had her child she comforted herself with the fact she could kill herself if she felt she couldn’t handle her disease. Now that she has a child, she must stay alive no matter how it feels to be in her body.
When I first meet L, my attraction to her is immediate. I see her at a party that D takes me to and notice her immediately; she is androgynous and cute. Eventually I become brave enough to sit down next to her and strike up a conversation about traveling. A day later I send her a friend request on MySpace, and we begin messaging each other; we have in a conversation about the spices we have in our cupboards. I ask if she’d like to take a walk together, which we do with J, who’s the person who had the party and is a new friend. J and I talk more on the walk than L and I do, and this feels okay, as I really like J and want to become friends with J. And L makes me feel shy.
Over time I learn that L does not drive a car; she is a bike person and rides her bike around Los Angeles to get places and with all sorts of cool bike people. I visit her at the Bike Oven in Highland Park, where she volunteers, hangs out, fixes people’s bikes for free. It’s a little tricky for both of us that I don’t ride a bike, as this is an important part of L’s life and identity. My arthritis and osteoporosis prevent me. I’m afraid I’d break into pieces if I got into an accident. Whenever I pick L up out in the world, we cram her bike into the back of my little hatchback Versa; she takes off a wheel to make it fit. We’re enamored with one another, so this doesn’t matter, me not riding a bike—at least not at the moment.
When I am growing up with arthritis and seeing doctors in teaching hospitals, small groups of resident doctors often come into the room; the doctor explains my disease to them, and they look at my body. This makes me feel alienated from my body, like it’s a peculiar object; I find myself outside of my body looking at it with them. Sometimes the doctor introduces the other doctors and asks if I mind if they are in the room. What else can I say but yes. It doesn’t feel like I have a choice. I become used to being an abnormal body. On good days, I feel glad they can learn from my body and what’s wrong with it. One upside to this dynamic is that I learn how to move outside my body, to leave it and distance myself from it as if I’m not in it, which can be useful.
I go to the lab to get blood drawn—for what is probably the thousandth time. No big deal. The woman drawing my blood asks me about my day as she inserts the needle and fills up the vials with my blood; she begins telling me about a dance class she’s taking. I realize she’s attempting to distract me from thinking about the needle, my arm, and the blood, and even though I’m fine and don’t need a distraction, I appreciate this kindness.
I notice a painful lump on my inner arm and first thing I think is I have cancer. I’ve come to expect bad things to happen in my body. After a few phone calls and a doctor’s appointment, I go in for an ultrasound. A young woman x-ray technician squirts cool gel on my upper arm and runs a warm wand over it. The image on a screen is blue, red, orange and pulsing. She tells me about what she is seeing, which I appreciate this; she says something about a lymph node, a cyst, and asks if I have a cat. There seems to be an infection. I’m to see an orthopedic surgeon. I wait in a small, cold white room in which there are two chairs, an exam bed, a desk, computer screen, and a trashcan—a typical doctor’s office room. The door is shut. I sit in this awful room for over an hour waiting for a doctor. I anxiously get up and walk out in the hall a few times to remind them of my presence. The surgeon finally comes in accompanied by two young men doctors.
The surgeon is old, white, smiling and animated. He glances at my face, looks down at my deformed hands, picks them up, turns to the two young men doctors, and says excitedly to them, “look at her hands.” He says “this is rheumatoid arthritis,” “ulnar drift,” “this is what happens, look.” I feel annoyance and anger. I blurt out personal information about myself: “I’m Adrienne, I’m working on a doctorate in English...” I never introduce myself this way, but want to signal to him that a smart person is attached to the arthritis-ulnar-drift-hands. He turns to the young men doctors, and says, “people with arthritis are always nice.” I snap at him, “not all of us.” He says nothing in response to this example of a not-nice-person-with-arthritis and turns to look at the computer screen with the two young doctors.
The first book L and I read to one another is Gertrude Stein’s Paris, France. We are camping and laying side by side in our tiny tent, reading with a flashlight. She tells me she has never read a book aloud with someone, not with her mother, or a friend or lover. She begins reading, her voice tentative, trying out her reading-out-loud voice.
Even though L riding her bike all over Los Angeles and me not riding a bike is initially not a problem in our relationship, I think about how this might come to be a problem, about how L needs a girlfriend who rides a bike with her. It does become a problem when we live together. When we are both headed somewhere for a social event, she wants to ride her bike, but I want us to go together in my car. Bike-riding for L is about independence and her way of being in the world. I seem to be impeding this. While I understand it, I don’t know what to do. I wish I could ride bikes with her.
L and I begin reading in our bed every night when we are living together. We read all of Italo Calvino’s fairy tales to each other. When she reads in different voices, we laugh.
After L and I are living together for four months, I’m told my intense headaches are a result of an issue at top of my cervical spine; possibly because of my arthritis, there is a dangerous amount of space between the top two vertebrae of my cervical spine. If the space increases, there could be nerve damage, or if I fall and hit my head, I could break my neck. A neurosurgeon will need to fuse the top two vertebrae to stabilize them.
In the shower the night before the surgery, I think about where the surgeon will operate—my neck where the spinal cord meets my skull; the top two vertebrae will be fused together with wire and pins. I think about if there’s a problem with the surgeon’s instruments, the pins, my bones. I might become paralyzed. I might die. I might not wake up from the surgery. I let myself really think about this as I stand in the hot water and cry quietly. I typically have panic attacks when I think about dying but decide I need to come to terms with the possibility of death now, at this moment in the shower. I don’t want to be scared and cry in front of L and make her more scared than she already is. After the shower, I don’t do any more thinking about death. I get in bed with L, and we go to sleep.
I survive the surgery. Three men doctors come into my hospital room to tighten the screws of the metal halo that had been drilled into my skull. They surround me and three pairs of doctor hands simultaneously tighten the screws—a team effort. My cries of pain become louder. They give up tightening the screws, at a pressure, they tell me, is less than desirable. They turn and leave, disappointed with me. Later, one of the doctors comes back alone. He is dressed meticulously; his pointy shoes are shiny brown leather; under his white coat, he wears a white pinstriped dress shirt and purple tie with a pattern of little white diamonds. In contrast, I am a monster; my hair is matted with blood and iodine, my drugged-up body is a disheveled mess in the hospital gown and bed sheets. He resumes tightening the screws, and I cry out in pain. He explains to me the pressure of the metal halo around my head, the tightness of the screws, needs to be more. He tells me you have a low threshold for pain. Most patients, he explains, can tolerate more pain. I try to stay quiet, but can’t keep myself from emitting more cries. He stops. He says I’ll come back later, and then he asks do you have any questions? This makes me mad. I yell this isn’t a good time for me to think of questions. He looks startled and walks out of the room. After the surgery and hospital stay, back at home in my bed I have to learn to sleep in the metal halo attached to my head that has metal rods anchored in a plastic and wool vest I wear around my torso. In the middle of the night when I wake up, L helps me sit up in bed because I can’t do it by myself. The halo is heavy, and I’m in pain and on drugs. “L, L,” I whisper, waking her up, “I have to go the bathroom.” She wakes up, leans over, puts her hand on my back, and gently moves me forward so I can sit up.
Before the surgery, I had asked the surgeon if I should cut my hair—if it will be in the way and hard to wash because of the halo. He barely takes a second to answer no. When I’m home it is clear that my shoulder-length hair is a problem. My friend J cuts if off. After the wound on my neck is healed, L and I learn to maneuver washing my hair once a week. I lean over the tub, and she gently washes my short hair, rinsing it with many cups of warm water.
Each day L reaches her long slender hand with a washcloth inside the plastic wool-lined vest connected to the metal halo around my head in order to wash my skin. She cleans me with such care that when the doctors remove the vest from my body after three months of me living in it, there are no stains on it, no evidence of the sweat and suffering of those months. L says that this is evidence that she has taken good care of me, and I say yes, it is.
The three months and three weeks that I’m in this device, I try to stay calm. Wearing a halo head-brace screwed into my skull means I take Oxycodone and move around the house in a daze. I’m scared to turn the wrong way, move the wrong way, run into something. I frequently knock the halo on the bathroom doorframe. I pause for a moment to see if something bad is going happen. I’m very careful with how I move my body, more careful than I have ever been in my life.
I depend on L completely, but I’m not careful with her or our relationship. Only towards the end of this time does she express feelings of frustration and impatience about my total dependence on her. I know she’s trying to do work for her classes and is also thinking about what I need. In this moment when she snaps, my response is to become angry. I throw a gift from her on the floor, a replica of an old view-master camera, accidently breaking it. It is only later when in therapy I come to understand that the person doing the care-taking needs as much patience and care as the patient. How do I not understand this at the time? I received care from multiple partners. It takes me too long to learn.
Virginia Woolf’s mother, Julia Stephen, cared for her children and for sick people in her community. She wrote an essay entitled, “Notes from a Sickroom,” in which she detailed methods for taking care of the sick, including the best method for the washing of their feet. It is a great refreshment to sick people to have their feet washed, and no part of the body can be washed more safely and with less fatigue to the patient. A warm flannel must be put under the foot, which should hang a little over the side of the bed, the foot-tub or basin must be just below, and the foot can thus be soaped and sponged easily and effectually. Each foot must be washed separately, and, as the sponge is removed, must be wrapped in a warm flannel and dried with warm towels.
When I go to the doctor’s office to have the halo removed, L drives me. I’m on extra pain medication, so I’m in a bit of a daze. Three doctors I don’t know come into the small room and tell me they’ll be removing the halo. They don’t ask if I have any questions. I think about the shirt I’m wearing over the plastic vest the halo rods are attached to, and it occurs to me that this will be a problem. I ask about it needing to come off, but they don’t pay attention to what I’m saying. Without telling me about how they will remove the halo, how it will go and feel, they surround me and without warning begin unscrewing the pins in my skull. I’m scared and want to tell them to wait, slow down, give me a minute, tell me what you’re going to do. They now notice my shirt is a problem and pause; we struggle to get it off me. I feel panicked, worried about the screws in my head. As they pull out the screws, I feel pressure, then the halo is out of my head and the heavy hot vest off. They hold gauze tightly on the wounds for a few minutes. Then the men are gone.
L and I are now holding the gauze on the bleeding holes in my head. I’m shaking. The nurse comes in and tells us about how to take care of the wound and about continuing my pain medication, but I’m dazed and disoriented. I don’t hear anything she says.
Later I am furious at these doctors: at their lack of communication and empathy in this moment, at what now strikes me as a cruel interaction. Even after years of this kind of treatment by doctors, I’m still am surprised at the cold clinical handling of my body as if I am not a feeling person.
I take oxycodone for a little while longer then stop abruptly, deciding I don’t need it anymore. No doctor or nurse told me that four months of being on it means that I am addicted to it—my brain and body both. When I stop cold-turkey, which you’re not supposed to do I find out, I feel depressed, have sharp stomach pains and become sick with nausea and diarrhea for weeks. I have to research on my own—on the internet—about what to eat and do about my opioid addiction because no one in the hospital or doctor’s office gave me any warning this would happen. I eat white foods—bananas, rice, potatoes and saltine crackers. I drink ginger and peppermint tea non-stop. This helps.
Sometimes when L is out late at night on her bike and doesn’t come home until late, I become very anxious that something bad has happened—that she’s been in an accident. I insist when she’s out late on her bike she text me where she is and when she’ll be home. She resents this, finding it controlling. I find that I have to remind her of the trauma of losing my mom suddenly to explain why I need this; but she says no, which confuses and hurts me.
In my sixth year of grad school when I have funding and don’t have to teach is when I have the neck surgery. I don’t take a leave from the program because I need the paychecks and health insurance. It’s the year I’m supposed to be writing my dissertation full-time and submitting chapters for publication in journals in order to be competitive on the job market, but the surgery and recovery take up six months of this year. The following year I’m required to teach again; it’s my last funded year, and I must finish my dissertation. I don’t ask my grad program or committee members special treatment or exceptions. This is a life-time continuation of me not wanting to be seen or treated as different, as disabled or sick. Even though my committee professors are kind, understanding people, I don’t want to seem pitiful or weak. I’m teaching, writing non-stop, and applying to jobs with no publications in my field. Things aren’t good between me and L; we haven’t recovered from my surgery; we aren’t communicating, aren’t having sex, aren’t close. We are not addressing the ways the surgery and her care-taking of me changed us and our relationship dynamic. I say I’m too stressed out, that we’ll talk about our relationship when I’m finished with my dissertation and when I know if and where I have a job.
L and I are breaking up and still living in the same house. Neither of us can afford to move out yet. I sleep alone in our bed, and she sleeps on the floor in her office. My dissertation has to be finished in two months, so I don’t feel I can take a break to make life decisions. I sit at my computer every day for hours writing my final chapter on Jean Rhys’s Voyage in the Dark. When I cry I’m not sure if it is about my life, the author’s, or her character, Anna and her bleak life and her trying to be hopeful and “get on,” like everyone tells her to do: Keep hope alive and you can do anything, and that’s the way the world goes round, that’s the way they keep the world rolling. […] But what happens if you don’t hope any more, if your back’s broken? What happens then? I’m crying for all of us, but I’m also crying about losing L. I can’t wrap my mind around this. I develop anxiety and have panic attacks.
The last thing L and I read aloud together is a passage from Virginia Woolf’s The Waves. I’m working on my dissertation, and she comes into the room with the book in her hand. We sit on the sofa, she reads, and we cry it makes us so happy. We love Woolf so much.
I take my leftover surgery anxiety medication. I’m in bed trying to sleep, L hears my anxious breathing and crying and comes in and holds my hand until I calm down. She goes back in the other room to sleep.
In one of my favorite films, Hiroshima Mon Amour—that I write about in multiple classes in grad school—the central character Riva, distressed that she must separate from a lover with whom she has just shared a traumatic personal story about loss from her past, cries, “I’ll forget you! I’m forgetting already! Look how I’m forgetting you! Look at me.” In the film’s screenplay, Marguerite Duras writes about this last moment they have together: “they look at each other without seeing each other.” I return to this film over and over—watching it and writing about it in order to think about cycles of intimacy and loss.
L moves out the same weekend I have my Ph.D. hooding ceremony. I’m exhausted and broke. Between non-stop phone-call conversations with my sister and patient friends who help me process the break-up, I binge-watch all of Mad Men on the sofa in a month. I start seeing a therapist. In late summer, I start messing around with men. I make out with three men in cars in two months.
I am now living alone and feel somewhat recovered from the break-up. I go to a friend’s art performance downtown. A group of women speak the words of other women who cannot cross borders. In this group performance, they lie on each other’s bodies, inhaling the air of one another, making sounds and listening. I find myself thinking about the intimacy of this. In my life now no body is next to me. I do not lay my head on the body of another person and listen to her breathing. I do not feel the comfort of a body next to me in bed; no more reading in bed together, no more whispered conversations in the dark. It takes me a long time to not feel the absence of L.
The girlfriend L has now rides a bike; they ride their bikes together all over the city. This makes me both happy and sad.
I’m at party where I meet and flirt with B, a young-man art writer, who is tall with dark curly hair, who knows friends of mine. Afterwards, he drives me to my car a few blocks away. We end up making out. He says, “will it offend you if I ask you to come over to my house?” I want to laugh at this question, but instead I say, “No, it will not offend me.” I go to his little house, and we stand in the dark living room and each take a shot of whisky. I say, “let’s go to your room.” We have all kinds of fun sex and talk in-between. We hold hands in his messy bed. I tell him his hands are nice—they’re delicate, feminine. He tells me that when he was a little boy he thought his hands didn’t look tough enough, so he’d hit walls to give them scars like his brother’s hands. It crosses my mind that this is a story he tells women. He asks about my hands, and I say I have arthritis. I didn’t notice them, he says. I tell him I’m a little self-conscious about them. He says, I think you used misdirection. He tells me a story about a Pilates instructor who uses misdirection to keep people’s attention away from the fact she does not have legs. He sounds sure, so I entertain this. He says, your hands are beautiful.
He writes me a noncommittal text the next day—“let’s do that again sometime.” I work to be okay with this form of communication.
I’m at the register at Target, and in my cart is a large box of cat litter. I struggle to pick it up and put it on the conveyer belt. I always buy this kind of cat litter, even though it’s difficult for me to pick up and carry. I rarely think about my struggling being difficult for someone to watch. An older woman in line behind me sees me struggling, and without saying anything, she reaches into my cart and puts in on the conveyor belt. After I pay for it, her daughter puts it back in my cart. I say thank you. I cry when I get inside my car, touched by their help.
E, A and I go to art galleries in Culver City on a Sunday afternoon. In a little back room is a show entitled, Impulsive Control, by the artist Melodie Mousset. On the floor are video screens of a naked body of a woman who is a sculpture in progress; the woman’s body on the potter’s wheel spins around. Her body, cross-legged, is visible, but not her face; her head is a pot being formed by a man’s hands that dip in and out of the wet pot, molding and forming the woman’s head with his fingers. The artist creates her pot-head, pushing and pulling the walls of it, her head malleable.
I look for photos of L on Facebook. It feels like she’s dead, and I want to see she’s still alive. In a photo I find, she’s watching a performance and touching her lips, in the way she does when she is thinking hard about something. I find a video of her; she is rubbing her eyes with her long fingers the way she does when her contacts are bothering her. I would ask are your eyes bothering you? And she would say yes. These gestures and her hands are so familiar they feel like they’re mine, like they also belong to me. Like my body belonged to her. I’m working to accept the loss of her and her hands.
In Thomas Mann’s The Magic Mountain, Hans Castorp finds comfort in the walls of a Swiss Alps sanitarium; he carries around the chest x-ray of his beloved, Claudia, who is dying of tuberculosis. Castorp, who doesn’t have tuberculosis, does not remain at a safe distance from his beloved. He imagines he has tb symptoms and performs them. He’s not with the men fighting the war, and he identifies with the sick bodies in the sanitarium, with those being nursed and comforted; he keeps company with his sick beloved.
The artist Hannah Wilke is diagnosed with lymphoma when she’s forty-six. Her Intra-Venus photographs that she began making in 1991 are of her body during this period.
In reading about Wilke on the internet, I come across an essay by an art critic writing about the Intra-Venus, about Wilke’s photographs of her sick body undergoing treatments; he writes she is “still refusing to be defined by her body and its appearance, assuming a surprising dignity even in its decline.” This critic’s characterization of Wilke refusing to being defined by her body strikes me as wrong and typical in its anxieties about the female body, aging, and illness. His observation that Wilke is “refusing to be defined by her body,” is strange given that in this series she is, in fact, as an artist offering definitions of her body, of the sick female body, in playful, provocative ways. She’s not in decline. In the same family as her early work, these photographs bear witness to the complexity of the female body; the body is solid, alienating, ugly, beautiful, resilient; never one thing, always multiple.
It is curious to me this critic describes Wilke’s body as “assuming a surprising dignity even its decline.” “Decline” is passive and vague, balking from acknowledging illness. I wonder if his surprise about a “body in decline” assuming “dignity” is about a need to see a sick body as dignified, about a fear of the lack of composure when our bodies are sick. In the images, Wilke is intentionally undignified: bald with discolored gauze up her nose; in another, her eyes are closed and her mouth is wide open as if in a furious scream; she wears a hospital identification bracelet and medical plastic-tubing hangs from her body; she’s naked with white square bandages on hips fresh from bone-marrow extractions, smiling as she balances a flower arrangement on her head; with a blue hospital blanket wrapped around her head she is a demure Virgin Mary; luxuriating in a sexy pose in a hospital bed, her body naked except for large, square white bandages taped on her hips; she is a sick “Marilyn Monroe.” Women are conditioned to feel ashamed when we’re not composed or appealing, when our bodies are a mess, sick, ugly, abject. I appreciate Wilke’s rejection of dignity.
I make plans with S, a good friend, to go to an interactive art and writing event in Chinatown. The two of us wander around and are directed to go down some stairs into a small room where people are sitting in chairs. A woman is instructing people to perform actions. She asks for volunteers to stand against the wall, and my friend does. She gives them a number of instructions on what to perform. One instruction is to “walk like a cripple.” Each person performs this differently. Two of them walk with a dramatic limp; one hunches over and drags his leg behind him; others hesitate and don’t do anything, including my friend, who I know doesn’t like this instruction and is thinking of me. When he returns to his seat next to me, he looks at me searchingly—I can sense he’s trying to figure out what I’m thinking. More than anything I’m curious about what the woman is thinking. Who uses the word cripple now? How was this art? I give her the benefit of the doubt; maybe her intention is to see what people do with that language and instruction, if people will immediately fall into cliché pantomime routines of disabled people and people with differently-abled bodies. Is this what she was doing? There’s no explanation or discussion.
When my friend sits down, he asks me if I want to leave. We climb the stairs and walk away together in silence. He says wow that was weird, that walking-like-a-cripple-thing was a problem. I feel bad for him because he feels bad for me. I appreciate he wants to give me a chance to talk about this. I say yeah, what was up with that?... What would walking-like-an- emotional-cripple look like? We laugh.
We check out another performance and run into people he knows. One of them is a woman I imagine my friend has a crush on—probably only because I have a crush on him. We stand in a group talking, then he leaves my side and seems to walk deliberately across the circle to stand next to her. This makes me sadder than the walk-like-a-cripple art performance.
I go downtown to the Broad Museum to see a performance of the artist and writer Martine Syms. “Politics is something you do with your body,” she says, sitting behind a table on the stage of the Broad She has layered a screen with photographs, text, and film clips of bodies of black women, of women known and unknown to her, and of celebrities. Syms tells us she spends time looking at old photos of women she doesn’t know, “trying to learn something about them,” and of her aunt, “a singular figure,” a woman who “moved through the world independently.”
In her multi-media performance, Syms mixes together personal and collective memories. “There’s something in the way she moves,” she says and plays this line from various songs that belong to her and us; the audience murmurs sounds of recognition. Remembering when she was taught how to move, she tells us stories about attending Tyra Banks’s girls summer camp while her brothers spent the summer playing guitar and skateboarding. She felt envious of their freedom of movement as she was learning to limit hers.
Syms wonders lately about how to enact “extreme presence” as a way to communicate visually the politics of the body, her body, the body of an African-American woman She stands in the center of the stage, performing power poses from a TED talk. She notes that these poses are “replacements for actual agency,” then adds, “these are perhaps no crazier than the rules I have for myself.” Seated, she reads her list of rules for her body, laughing but serious. “These are the ways I protect myself.” She returns to photographs of black girls, ending with the declaration: “Looking is a way of knowing—and I see these girls.”
I’m with my dad, who is visiting me, and as we are walking he asks if he can help me carry something, and I ask why, and he says you look fragile. This upsets me. I’m not fragile, I respond unreasonably angrily to him, why would you say that? I don’t want to appear fragile. I don’t want to be fragile. Even though I know my fragility is one of my strengths— that it makes me sensitive to suffering and empathetic towards others.
In high-school I wear splints in my shoes because of the arthritis in my feet. I worry other kids see the splints peeking out of my tennis shoes, and I worry I walk funny. Almost nothing is worse than being different in high school in a small Indiana town. I concentrate on walking down the hall, walking normally, trying to not walk-like-a-cripple.
As an adult, after many surgeries, when I’m traveling and walking all around cities, I don’t think about what my walking looks like to others. I’m so happy to be walking around out in the world. However, I still carry with me shame about being different, weak, vulnerable.
I go to visit a school for my job, and at the top of the stairs is the door with a buzzer to the side. I lean to press it, and my foot goes down the stair. As I lose my balance and am heading down the stairs, trying to catch myself, I’m scared. I know I’m going to get hurt.
I’m thinking about my brittle bones with osteoporosis, and I am thinking about the metal hardware in my neck holding together the top two vertebrae of my spinal cord. I don’t put my hands out, instinctively protecting them. My head takes the hit on concrete twice, and I’m on my back. I don’t move. People come out of the school, and an ambulance is called. This is the second time in my life an ambulance has taken me alone to a hospital. (The first is when I’m in a car accident.) All I can think about is my neck and if it’s okay, even though it doesn’t hurt. I wonder what if I die alone in this ambulance. In the hospital, I’m told I have a slight concussion, but no broken bones. I’m relieved.
For months, it’s painful to walk. I tell my doctor. I’m in pain, but he dismisses it as a muscle or tissue injury and tells that it just needs time to heal. (I find out a year later when I trip on my pajama pants and fall hard in my bedroom and get a hairline fracture in my femur that I did have a fracture in my pelvis from the fall down the stairs.) In addition to the pain in my pelvis, I have vertigo, which lasts for a year. I constantly feel like I’m going to fall, which is difficult because I have to go up lots of stairs to get to my house. I get advice from people about exercises to do to fix vertigo; no doctor seems to know what to do for vertigo other than prescribe medication for dizziness. My dad who had vertigo helps me do the exercise when he visits me, which is called the Brandt-Daroff exercise. He shows me, and I lay on bed and turn my head and do sit-ups in a certain way to re-situate crystals in my ears. My body and brain don’t forget the fall, and I develop anxiety about escalators and going down stairs, always hesitating and slow, like an old woman; this is what I imagine I seem like to people around me, but I don’t care. I look down and concentrate on my feet on stairs.
A few days after the fall down the stairs, I have intense vertigo and a horrible headache. I imagine my brain is bleeding. I text my friend S who lives nearby that I need to go to the hospital, and he comes right away to pick me up. Because I have hopes that one day something romantic will happen between the two of us, I don’t want to seem too miserable in the car ride to the hospital. I try to playfully banter with him like we always do. Then I tell him he needs to pull his car over. I open the door and throw-up on the side of the street. As I’m throwing up, I think this is the least attractive thing one can ever do in front of a person, and I resign myself to the fact we will probably never have sex. He takes me into the hospital, and I insist he doesn’t need to stay, even though I’m scared and want him to. I don’t want to seem like I need too much care. Ever since my break-up with L, I’m anxious about appearing like I need alot of care, especially to people I’m romantically interested in. I have a MRI and find out my brain isn’t bleeding. S is gone. I take an Uber home.
When I’m on an airplane, an older man next to me asks the stewardess for food, and his voice is a gravel whisper. I think oh he’s had something happen to his throat, his voice box or vocal cords. When I drop a cup on the floor later and can’t reach it, he reaches down to pick up for me and silently hands it to me. I say thank you.
I use henna on my hair and take turns asking my best friends to help me. It goes like this. I make us tea. I sit in a chair. My friend stands behind me and separates and saturates strands of my hair with the henna, a thick earthy-smelling green mud. Talking throughout the application, which takes about half an hour, we always cover a lot of ground. Each friend has her own way of applying the henna. M asks questions about how to do it, and goes slow, wanting to do it right. A is meticulous, careful not to get any on my face or neck, and when she does, uses a warm washcloth to wipe it off. E enjoys the texture of the henna and puts it on thick. S is messy and gets it all over me and the floor. Afterwards, my hair is shiny with hints of auburn, like the hair of my great grandmother Fox, who I’m told had red hair. I like having my friends’ hands in my hair, their care and the intimacy of it.
My sister and dad are concerned about my hands. I find this out when we are together during Christmas break. They talk when I’m out and when I return, my sister reports the conversation to me saying this will make you mad. She tells me they wonder if I should have reconstructive surgery—I guess because my hands look bad, deformed. She asks what happens if I can’t type in the future. I say well they don’t hurt, I can use them fine. I then say I live alone and who would help me if I had hand surgery? We end up talking about my dating life and what people think is wrong with my hands. My sister tells me I should explain my hands to people on the first date and that I have arthritis. I tell her I do this if it comes up naturally.
The last person I explained my hands to on a first date said oh I thought you’d been in an accident. I realize from this comment that my hands must look bad to people. Soon after, another woman I go on a few dates with, when we make out, she touches and holds my hands without hesitation. I feel encouraged.
I go see my rheumatologist Dr. K for my usual office visit. Over the ten years I have seen him, he’s always struck me as unhealthy and unhappy. Today he looks different. He’s lost weight and is tan. I notice he’s wearing cute socks and stylish leather shoes. He seems to be radiating happiness. Like most rheumatologists I’ve seen over the forty years I’ve had arthritis, Dr. K mostly asks me questions my arthritis is doing and talks about the drugs I take for my disease. He rarely asks about other aspects of my health or about my personal life. This time he asks if I’m dating. Under his care, I’ve been in two relationships and been through two break-ups, and he knows that L and I aren’t together anymore. He starts telling me about his divorce and new wife. She seduced him. He asks me if I’m good at seduction, at “picking people up.” I am startled by this. I can’t answer for a minute. Yes, I laugh, I’m good at this. He wants to share his romantic success with me, maybe to help me find a new partner? He tells me about the importance of flirtation and the book The Art of Seduction. He says he’s learned from this book about how seduction works. I wonder if I should try to give him examples of my skills at seducing people to end this awkward conversation, but can’t get them out of my mouth. Plus he’s so excited to share; he’s never talked with me this long during a visit. I appreciate this. I nod and say yes and thank you. I leave with mixed feelings. I feel sad that this is the longest conversation we’ve had in the years I’ve been seeing him. I feel happy for Dr. K that he’s feeling good about his body, new wife and life. He’s being a better doctor, at least in this visit. For a moment, a doctor sees my body as something other than just a disease, as something that can and should experience pleasure.
I hold a Green Calcite stone, which helps me let go of what is “familiar and comforting and that is no longer needed.” In my other hand, I clutch a Rose Quartz crystal, “which heals one emotionally.” It helps to release “unexpressed emotions and heartache.” Whether any of this is true or not, I’m not sure, but I feel like it is. In my bed at night when I hold them tightly, they become warm in my hands, and I fall asleep immediately.
