The first tattooed person I ever knew was Misha, my mom’s first boyfriend in the US. She didn’t call him that yet, but I knew that that’s what he’d become as soon as he stepped into our studio apartment, helping her carry a tall, leafy houseplant. My mom’s new female friend was also with them; together, they came from the language course all adults had to take to receive financial assistance. Immigration briefly leveled the playing field between me and my mom. I studied English in my fifth-grade ESL class and she studied it in the evening. It only took a few months for me to pull ahead of her.
“How do you like our million-dollar view?” my mom waved to our visitors.
Through the windows you could see a far-off, miniature Golden Gate Bridge, as if shrunken to fit the frame. It was our sliver of luxury in this dingy apartment, where we ate buckwheat kasha brought over from Ukraine because we didn’t know if we’d be able to afford American groceries.
While all three chatted and joked about their teacher, I pretended to play with my toys, observing from the sidelines. The woman wore a velour tracksuit, which, this early after our immigration, I considered the epitome of style. The man’s clothing didn’t make an impression either way. He was congenial, which was a plus. But he was shorter than my mom, which was a minus, though not a dealbreaker. He was a Russian-Jewish greenhorn like us, which wasn’t helpful in our project to become Americans but was hardly surprising. I would’ve tuned them out, playing with the doll I chose at Toys”R”Us for my tenth birthday just days after arriving in the US if my eyes hadn’t landed on Misha’s forearm. A real-life tattoo—somewhat faded, somewhat covered by hair, but undeniable. In Soviet Ukraine, I only saw them in movies and always on sailors or criminals and I had no reason to think Misha was a sailor. Squinting, I could tell his tattoo was religious, a Virgin Mary. Was she holding a child? I shuddered. Why would this Soviet Jew have a mark on his body? Why would it be Christian? None of it made sense. I wanted to look closer, but I also never wanted to see him again.
Look and not look—this was my pattern when it came to Misha’s tattoos for the years he lived with us. It wasn’t just that I found his markings offensive; I winced at the pain they suggested, unbearable to my young mind. Though he and my mom argued a lot, he was kind to me, and we became close. Still, I never asked him the story of his tattoos. I simply knew this was not done. So, I snuck glimpses, the way one does with something curious and disturbing. Religious symbols were like islands on his upper body; I tried to connect them but couldn’t. There were many crosses and, on one of his pecs, a large Russian Orthodox church with its iconic onion domes. I liked Misha, so I accepted his tattoos, but if I could have had it my way, I would’ve erased them all.
Three years ago, I was in the midst of the longest and most dangerous lupus flare of my life. I’d been living with the chronic illness for about ten years. Periodic flares were part of the deal, but this was different. My immune system was attacking my body from a dozen different directions. I had rashes. My feet went permanently numb but my joints were on fire. Walking a flight of stairs was painful. Typing was painful. Wearing clothes, sitting in a chair, lying in bed—all of it was torment.
To distract myself from the near-constant sensory distress, I started looking at tattoo images online. It was something to fixate on, the right activity for a person in the thick of brain fog. But the more I looked, the more I found myself justifying. My decade anniversary of living with lupus was coming up and I wanted to commemorate it. I felt an urge to make visible to others, albeit only symbolically, my largely invisible experience. With lupus, the signs are often subtle. Though the disease has the potential to cause inflammation in any organ, including the skin, much of the damage happens behind that barrier: in the kidneys, brain, heart. I could see the traces of my disease, some temporary (rashes, swelling), some permanent (twisted knuckles, discolored skin), but I knew what to look for. I hid whatever I could.
There were many benefits to having a so-called invisible illness, but it also meant others assumed I could lift heavy objects, eat, sleep, and work without discomfort, and generally go about my day without worrying about staying alive. The years of hiding had begun to wear on me.
We’re social creatures and being in pain is often isolating. For people with autoimmune diseases, especially women, especially women of color, invalidation is at every turn in our healthcare system. “We don’t know why you’re in pain,” “This pain is not typical of lupus,” and “I know you’re suffering but your labs look stable” are all statements I’ve heard from doctors, over and over again. In my private life, I became accustomed to even friends and family members saying, “I had no idea you were going through all this,” though it never ceased to make me feel unseen, alone, and mad. The tattoo, then, would be a reminder, a visible marker of pain.
From the start I knew I wanted an image of a wolf on my forearm, forgetting then that this was the location of Misha’s Virgin Mary tattoo. Lupus is Latin for wolf, and according to the literature, the illness was named after a twelfth-century account that the skin sores associated with the disease look “as if a hungry wolf eats his own flesh.” This grotesque image has haunted me from the moment I encountered it, heightening my shame at having a body intent on destroying itself, my disgust at the visible signs. To brand myself with something I feared and sought to subdue seemed like a reclamation. I didn’t want to romanticize the disease, but to acknowledge that it was with me, and that together we had found a way to coexist, however turbulently. The tattoo would represent this permanence. The wolf would be drawn in a single black line, to symbolize the continuity and abstractness of my chronic but shapeshifting disease.
“That looks really cool,” the artist said, admiring the mockup on my arm. He stood behind me as I looked at myself in the mirror. I couldn’t have felt less cool or out of place. We were on vacation in LA and I impulse-scheduled the appointment at a nearby studio. This was in hipster Highland Park, a white-walled space—more art gallery than the hippie or rockabilly parlors of Haight Street where my friends used to get inked. Everyone in this aggressively air-conditioned, sterile haven had multiple tattoos; I was the uninitiated one, to be handled with more care than I’m used to getting from doctors and nurses. I caught my partner’s eye in the mirror and smiled to telegraph my awkwardness, then looked again at the design. The wolf reflected back to me was now on my bicep. The artist’s drawing looked better there and I could see the benefit of a less visible spot—no unwanted questions from my students or immigrant relatives. I could choose when to let the wolf see the light of day and when to keep it inside.
Lying on the leather table, I looked and looked away as the artist conjured the wolf, each stabbing a point in the thread. In the few days leading up to the appointment, I had badgered my partner and friends: “How bad will the pain be? Am I going to chicken out?” A friend familiar with my health problems said, “You’re sticking a needle into your flesh; it’s going to hurt. But you know pain.” Did I know pain? I certainly experienced it daily. I documented it in my symptoms diary, in my countless emails with doctors, and in my essays. I read books and articles and testimonials about pain—how it works, whose pain is taken seriously, why the pain scale is so limiting. I approached the subject with more dedication than I applied to my dissertation research and in the process learned that, in many ways, we barely know what pain is and what it takes to understand the pain of others.
I’d been pricked and pierced countless times, by needles that tested my nerve damage, sucked out my blood, or gifted me necessary fluids. I bore it all by turning my head and fixing my gaze on the photo of a phlebotomist’s family or a blank hospital wall. The sting never ceased to catch me off guard and I hated seeing the infliction of pain, the siphoning of my insides. Even my internal organs had been punctured for tissue samples and treatments. The previous winter, doctors inserted a needle through my back and into my kidney to get a sample of inflamed tissue. I was grateful to be drugged and on my stomach, eyes pressed into stiff hospital sheets. When the results came in, I had a new diagnosis, a new form of lupus (nephritis) to go with my old lupus (systemic). It turned out that my kidneys were toiling through inflammation; they were “in pain” but neither I nor my doctors knew it.
Lying still, clock in full view, I couldn’t help but think about the fact that I was engaging in a ritual performed by so many others with chronic illness. Since becoming interested in my tattoo I’d read numerous accounts of disease survivors modifying their bodies to commemorate loss and resilience or to camouflage scars. For many people, modification served a cathartic purpose, a means of empowerment. If everything goes without complications, getting a tattoo is indeed a way to experience pain on one’s own terms. One knows what the basic purpose of the pain is and, maybe more importantly, that the pain has an end time. With lupus pain, I’m often in the fog about the source and the parameters. Joint pain, for example, can begin in the morning and clear up by the afternoon. It can also last a week, holding steady or seesawing between dull and acute only to migrate to a different part of the body. The phrase “chronic pain” is, in some ways, a misnomer because there’s no consistency or fixedness to it, no way to truly know it. Unlike my lupus pain, this tattoo pain I could count down, minute by minute. So, was it even pain? Can we call pain something we seek out? Can torment be wanted?
The notions I internalized in my childhood intruded into my thoughts, even though they no longer held power. Tattooing was taboo not only among Soviets but also the Orthodox Jews who were my teachers until high school. I went to a Hebrew day school in Ukraine, in the midst of its transition out of the Soviet Union and then during our first years in the US. My family was secular in the typical Soviet way but liked the idea of my getting a religious education, as compensation for all the years Jews weren’t allowed to practice. “You shall not make gashes in your flesh for the dead, or incise any marks on yourselves. I am the Lord,” I learned in Torah study. That means don’t deface your body because you’re created in god’s image, my teachers told me. I wasn’t even a teen yet but I understood this meant no tattoos. People who get tattoos have no respect for the Lord.
As I matured, I questioned this notion but secretly wondered why people were compelled to do something so painful and permanent to their flesh. It took years of being poked and prodded for my flesh to not feel sacred anymore. I swallowed pills that dropped like bombs in my stomach, permanently damaging my digestive system—anything to lessen the pain and keep my disease in check. My own body produced antibodies that attacked my healthy organs. Putting a little ink into my skin? Why the fuck not.
Tattoos were what Nazis did to the Jews, my teachers told me. They treated them like cattle. Why would you choose to do the same to your flesh? After I severed religious ties, I met countless Jews who displayed their “gashes” and “marks” without shame. Still, it was only recently that I learned that Jews played a role in the history of tattoos in America. Just a few months before getting my wolf, I saw an exhibit on Jewish tattoo artists at San Francisco’s Jewish Museum, where I learned about such colorful characters as “Lew the Jew” Alberts and “Brooklyn Joe” Lieber. These were working-class descendants of immigrants; they made a living off the art of tattoo, helping the profession innovate in artistic and technical ways in the first half of the twentieth century. One figure that impressed me was Mildred “Millie” Hull, who was a circus performer, sex worker, tattoo artist, and generally famous “tattooed lady,” per the curator’s words. Walking around the exhibit and seeing photos of Millie flaunting her inked, lingerie-clad body and “Brooklyn Joe” working on a client with a full-back design, disrupted my understanding of Jews’ relationship to tattoos. It emboldened me. Looking at a cheeky flash design of a pin-up pooping into a bucket, I realized that, after nearly two years of living in a flare and mulling over my tattoo, it was time to shit or get off the pot.
The appointment lasted no more than an hour and I was grateful. I wanted to leave immediately, to avoid showing the wrong reaction. The artist did exactly what I asked of him. But what I asked for made me permanently different and I was so alienated by my new appearance I couldn’t feign happiness. I looked at the tattoo countless times that summer, when brushing my teeth or washing hands in a restaurant bathroom. But catching myself, I’d turn away, habitually afraid of my changing body.
The tattoo didn’t make me magically accept my diagnosis. I’ve been doing that work for a decade and it never feels done. Nor did it get others to take my pain more seriously. Like my disease, my tattoo, ironically, was not fixed. The meaning of the design was hardly obvious to people. I had to reconstruct the tale of the wolf, and how I did it changed depending on the context, the audience, and my mood. “Did you get your dog tattooed on your arm?” one of my friends asked, referring to my goofy-looking terrier mutt, just hours after my appointment. This was not a reaction I predicted but he wouldn’t be the last to have it. Isn’t that always the case when it comes to meanings and authorial intentions? Things don’t work according to plan.
When the summer ended, I put on sleeved shirts and went back to teaching. After my two-year-long flare, I was tired and relieved to not have to talk to strangers about my disease. I was also more skeptical than ever about whether making my pain visible made others more empathic. There’s too much proof in our culture that seeing someone’s pain isn’t enough to make us care about them. Our concepts of what kind of pain is legitimate, and whose pain deserves outrage, shape our interpretations of the visible. Then COVID came and there was no one to catch a glimpse of my tattoo and ask me about it.
“Eventually, you’ll stop seeing it and it’ll just become part of you,” my many-tatted friend said to me soon after I got mine. But this hasn’t happened yet. In quarantine, a tattoo that was supposed to be a signal to myself and to others became visible only to me, just like my disease. The tattoo feels part of me now but I continue to look and not look. The mix of attraction and repulsion must have something to do with tattoos appearing to be both outside and inside our bodies. They look drawn on the surface but live below the epidermis, reminding us that the envelope of the body is porous, penetrable. Now that my flare has finally calmed, the wolf reminds me not only of my ability to survive but also of my vulnerability. It reminds me that I’m high-risk; I can easily get sick; I can die.
During one of my quarantine check-ins with my mom, I finally brought up the subject of Misha’s inked body.
“His whole autobiography was written on those tattoos,” she said, her tone wary when speaking about the ex. By this point, I’d learned more about Soviet tattoos, particularly their history in the prison system, so I prodded her with questions.
“Yes, he sat,” my mom admitted, using the Russian expression for serving time. There was drug addiction, theft, multiple prison terms. She wasn’t sure.
“We never talked about it,” she said.
“Why not?” I asked, immediately realizing this was an American question. It’s normal for the Soviet-born to not discuss, even with close ones, that which is uncomfortable, shameful or sad, be it a prison term or an incurable disease.
“I didn’t need to ask him anything,” she said. “The tattoos told the whole story—where he served, how many times, what for, and what his status was in the hierarchy.” To hear her speak so casually about a practice so forbidden by her culture was shocking. But it was just as shocking to learn she was right.
After our conversation, I watched the documentary The Mark of Cain, which features interviews with Russian prisoners who talk about their tattoos, decoding what’s written on their bodies. According to inmates and experts, the Virgin Mary means theft. Each church cupola indicates a term served. There were many other symbols—a vocabulary for representing one’s journey through “the zone” (the Russian term for the prison camp). There were slogans and truisms. One woman, convicted under communism and released into a capitalist world, had the words “Life will teach me to laugh through tears,” on her back. “Welcome to hell,” said the body of another prisoner, in English for some reason. There was also a tattoo that said “Remember death,” a Russian translation of the classic imperative: memento mori.
When I got my mom on the phone to discuss the documentary, I wanted to ask how many cupolas Misha had but I didn’t push my luck; it was clear that revisiting the relationship hurt her. We spoke generally about tattoos and I tried to work backwards, re-examining my past hangups about tattoos and my attempt to get over them. It was strange to realize I was trying to do something similar to Misha—to commemorate the hell my body had been through and would inevitably go through again.
My mom had the same attitude about my tattoo as she did about Misha’s. She accepted it but didn’t want to talk about it. She certainly didn’t want me getting another one. When I brought up the possibility of doing it again, she said: you will grow old and your skin will sag and it will look ridiculous with all these tattoos. Will you be able to look at yourself in the mirror? This was not a question. There was horror in her voice. In the moment, I laughed to avoid conflict but I haven’t stopped thinking about her words. I don’t know if I’ll ever be able to look at myself in the mirror without wanting to look away. But I want to get old. I want my skin to sag because that will mean that I lived a long time with this disease.
When I look at my wolf, I see an unbroken line, forged from countless pricks. I trace it with my gaze, always starting from a different spot and never making it to the end. I’ve long forgotten the point of the artist’s first injection. The pain has faded from my memory or merged with memories of other pains now dulled and diluted. My wolf, a proxy for the thing that lives within me and hungers for my flesh, the thing that can’t be eliminated but only subdued, looks back at me and—smirks? After many months of gazing at my tattoo, I decided that the artist unintentionally curved the wolf’s mouth into a smile. The eyes are no help in interpreting the expression. Lacking in irises, they present as holes, mere blanks of my flesh, not windows into anything. And anyway, the wolf cannot smile. It cannot look back. It cannot feel or remember. But when I look at my wolf I remember. I remember death, even as I stave it off for as long as possible.