• My Disease is Not a Metaphor

    Maggie Levantovskaya on Her Life with Lupus

    Flare: a sudden brief burst of bright flame or light. My flare has not been brief. Nor did it come suddenly or brightly. It crawled along my limbs, sending a dull, nagging pain wherever it landed. A knee became harder to bend. An elbow froze in place overnight, making it impossible to straighten out my arm in the morning. The knuckle of a middle finger puffed out, the skin tight and pink. In a couple of days it went back to its regular shape but new fingers were affected, my index becoming curved, bad for pointing. Shoes started to feel painful to step in, even to put on. My sneakers were broken-in but the soles of my feet felt like I was walking barefoot on small, polished stones.

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    “It must be the wetness,” I told myself. I even said it out loud to my partner, though really I was comforting myself. We were in the Matagalpa department of Nicaragua, the highlands known for their shade-grown coffee and cacao. It was December and the rain came several times daily and nightly. Traveling with my partner’s family, we hoped to get a glimpse of the country he left as a child. Being accustomed to the California drought, we both complained of the humidity. And everyone was sore from sleeping in unfamiliar beds. “This is normal,” I told myself, waking up in the middle of the night from pain in my knees, “this is not lupus.” Lying awake, listening to the rain pounding against the roof of our cedar cabin, feeling my newly formed mouth sores with my tongue, I unknowingly drifted into what Susan Sontag called “the night-side of life.”

    Staying at Selva Negra, the eco lodge founded by descendants of 19th-century German coffee farmers, made me remember both the Soviet “houses of rest” of my childhood and the spa towns in the 19th-century Russian novels I used to teach. There were no lupus patients in my childhood or in classical Russian literature; the most compelling literary “invalids” were men whose illness was a manifestation of their character. But even while thinking about places of convalescence, I refused to recognize the signs of an illness I had been living with for a decade. With the flare still in its early stages, it was possible to negotiate the pain without putting a name to it.

    My mind plays tricks on me when I start to think of myself as a citizen in “the kingdom of the well,” as Sontag put it, or at least an expat. I simultaneously live in terror of the next flare and fantasize that I may never get a flare again. It’s not that I think of myself as cured but I entertain the idea of my disease subjugated within me, trapped in a deep coma. When believing that I am “in remission,” I remember the sick body, but through a gauze. The pain is still frightening but it is also vague. The levels, locations and migration patterns, because for me lupus-related pain always moves, become harder and harder to revisit. When the stiffness and swelling make their way back, I turn away from them, pretending not to recognize the signs that I overstayed my visa, that it’s time to return to “the kingdom of the sick.”

    Denial comes to a halt when I can’t breathe or walk without real effort. This time it was walking. After we returned from Nicaragua, my knees began to burn. The muscles in my thighs felt more sore than after a day-long, up-hill hike, even though I barely got exercise. I had to do a lot of sitting and typing to prepare for teaching in the new term and this made my legs calcify. Going from the couch to the bathroom required physical and mental exertion. At the age of thirty four, I had to deal with the same problem as my 80-year-old grandfather_getting up from the toilet. This was enough to make me go into the hospital.

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    The results of the blood work were a relief. They confirmed what I was too tired to deny. The expat lifestyle was over. My body was once again trying to destroy itself.  My immune system was producing antibodies determined to eliminate my healthy cells as though they were foreign invaders. My antibodies against my body. The body against itself.

    “The Body Against Itself” happens to be the title of a book about lupus published in 1977. I never owned a copy. Instead I got the more recent 1996 edition of The Lupus Book: A Guide for Patients and Their Families. In 2008, it was indeed the lupus book. And it was gifted to me by a close friend, who, upon hearing news of my diagnosis, ordered it for me, perhaps out of fear that I wouldn’t do it myself. Once I had the book in hand, I devoured nearly all of it in a little over a day, stopping just before a chapter titled “What’s the Prognosis?” It was in reading this book that I first learned to think of my body as “allergic to itself.” I later found out that doctors frequently use this analogy when speaking with patients. One of the earlier chapters in the book was titled “The Enemy is Our Cells” and I couldn’t help but bitterly smile at what I assumed was a pun on “the enemy is ourselves.” Needless to say, the book provided me with metaphors for thinking about the disease. These were metaphors of hypersensitivity, self-sabotage and, of course, war. Put them together and you are talking about fighting a war against yourself, or “just” against your body.

    In The Guermantes Way Marcel Proust writes, “It is illness that makes us recognize that we do not live in isolation but are chained to a being from a different realm, worlds apart from us and by whom it is impossible to make ourselves understood: our body.” No, it’s not illness, but books. And the stories we patients and doctors tell each other and ourselves. Doctors constantly use metaphors to help patients understand what’s going on with their bodies. I knew that the military metaphors and the mind/body dualism were harmful to me. I had read Sontag. I was not well versed in crip theory but I was surrounded by people who were and they helped me critically approach the ableism that pervades all aspects of our culture. But, at the same time, the sense of alienation from my body, the feeling of being betrayed and undermined by my own self and the desire to do battle with that body/self, was strong. As Roxane Gay writes in Hunger, “What I know and what I feel are two very different things.”

    Lying awake, listening to the pounding rain against the roof of our cedar cabin, feeling my newly formed mouth sores with my tongue, I unknowingly re-entered what Susan Sontag called ‘the night-side of life’ in Illness as Metaphor.”

    The treatment for my current flare began as expected, with a rapid-fire attempt to dominate the body with a high dosage of steroids and organ transplant drugs. The goal, according to my doctor, is to “shock” the immune system into submission. Shock and awe. Military metaphors. In the course of treatment, the situation is constantly assessed and reassessed. There are more blood tests and urine tests. A slow retreat follows the initial attack on the immune system. My doctor has to fine-tune the drugs, adjusting the treatment plan and then re-adjusting it. I am used to dividing my day according to pills—some must be consumed with food and others on a completely empty stomach. During a flare, I have to be extra vigilant but I inevitably forget to take my meds because of carelessness or inertia. There are no good drugs for lupus. And no wonder, it’s “a women’s disease,” particularly common and complicated among women of color. When the drugs do work, there are many good days. One of my friends calls prednisone “the devil’s tic tac.” It can be scarily effective but not without side effects. For me, it’s anxiety, insomnia and digestive problems. But they are worth the good days, when the pain almost disappears and I let myself feel that I am well again. What I know and what I feel are two very different things.

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    Flares do not mean that work stops. Even on days when my legs feel as heavy as pillars of cement and my arms as brittle as toothpicks, I still have to face a room full of students. In the mornings, parts of my body feel immobilized, as if wearing a brace, and I slowly move my muscles and joints to loosen them up even though my impulse is to fall back into bed or sink into a couch and be still. This is self-sabotaging because, for my joint pain, being immobile only breeds more immobility. That is why nights are the worst. I cannot sleep through a night normally but during a flare I awake dozens of times. And always I awake into pain. Before knowing who I am or where I am, I feel the dull, dolorous stillness of my body. The night-side of life.

    I accepted the existence of my flare around new year’s but at the end of last January, I got good labs. I don’t remember if my doctor used the word remission, but it certainly crossed my mind. And so I started thinking about my tattoo. I don’t have any tattoos. This would be my first and it would commemorate the end of my flare. I was certain that it had to be an image of a wolf. I always hated the word “lupus.” The sounds felt soft and mushy in my mouth. I rejected the idea of this disease, its nebulousness, its synonymousness with weakness. But now that I felt myself emerging from my flare, it felt safe, superstitiously speaking, to externalize my diagnosis, to embrace the wolf.

    Unlike cancer, lupus is not a metaphor for anything. Maybe that’s because it is best known as “the great imitator,” “la maladie aux mille visages.” It’s a hard-to-pin down set of symptoms that expresses differently in different people and resembles many other illnesses. Doctors today think that SLE (Systemic Lupus Systemic Erythematosus), which is what I have, is not even one disease, but many different ones that are not yet parsed out. Almost half of the people diagnosed do not develop the facial butterfly-shaped rash that’s associated with lupus; people who have it supposedly appear to have been bitten by a wolf. Without the rash, lupus can be invisible on clothed bodies, as it is in our culture. My tattoo would be for myself but it would also force me to externalize the disease, to have conversations about it.

    I know other people with other chronic illnesses who got inked to mark their bodies. The semi colon tattoo, for some, represents struggles with mental illness and suicidal ideation. For people with IBD it commemorates their ostomy. Cancer survivor sometimes get tattoos over their mastectomy scars, less to cover them, than to accept their changed bodies. To exercise agency over my body, to inflict bearable pain with a clear beginning and end, seemed appealing. My tattoo would be an abstract representation of a wolf, located on my forearm. Or it would be an image of a woman in a cape of wolf’s fur, in the stye Princess Mononoke. I never saw myself as a “lupus warrior,” but I also never had a tattoo so my imagination went into cliché places.

    “The wolf, I’m afraid, is inside tearing up the place,” Flannery O’Connor wrote in July of 1964, after spending 50 days of that year in the hospital. In March, my labs were bad again and suddenly I was no longer eager to embrace the wolf. My tattoo would have to wait. Either that or I would have to rethink the design. Maybe I could get a tattoo of a wolf howling at the moon. Maybe it would be of an octopus. According to Proust, “to ask pity of our body is like talking to an octopus, for which our words can have no more meaning than the sound of the sea.”  I don’t ask pity of my body, but I often refer to it as a strange, insubordinate creature. “My body is not working today” or “My joints are giving me a big fuck you,” I say either out loud or to myself. The mind/body dualism is as well known as it is potent.

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    It’s comforting to think of oneself as capable of moving between different realms—Sontag’s two kingdoms. To view oneself as being in exile but on the verge of return can give one hope. To think that this body can be a healthy body and that this self can be one with that healthy body is a beautiful fantasy. But as the flare lasts for months and months, with cell counts jumping back and forth over the line of “normal” or “healthy for someone with your condition,” it becomes harder to buy into the dichotomy of well and ill, flare and remission, lupus and not lupus. As the war drags on, it becomes less and less clear who the enemy is. Under a regimen of immunosuppressants, the body opens up to uninvited guests that seek to do further damage, to take over—infections, viruses. This time it’s an infection on one side of my face but I have nightmares about it taking over the rest of my body. Such a strange situation for an immune system—to have to battle foreign intruders while continuing to fight against itself.

    Commemorative tattoos usually serve as reminders of that which is over, of milestones. But this flare shows no sign of ending. When I first learned of lupus, I imagined it in terms of brief flares and long remissions, but the longer I live with it, the less I believe this to be true. Even with past flares, there was no day on which I woke up and knew that a flare was over. Nor did the end of a flare, as pronounced by my doctor after looking at blood and urine, mean an end to pain, or the fog of depression that comes with straddling what one believes to be two worlds. The longer I am in this flare the less I think in terms of beginnings and endings. But what if this flare doesn’t end? What if it ends me?

    Kristin Lindgren writes that some individuals with chronic illness conceptualize it as being “uncannily both me and not-me.” This idea resonates with my experience right now. This disease is me. I have lived with it for over a decade now. Embodiment to me is inseparable from lupus. Since my disease has begun to express itself, I have seen it as an inextricable part of my identity. This is not a source of exceptionalism or pride. It just is.  I have seen my body change as a result of this disease. My knuckles are larger. My skin is chronically pale. I hide from the sun because ultraviolet rays damage my cells, putting my immune system into attack mode. At around the time that I began to avoid the sun, the subtle redness that I used to have in my lips and cheeks disappeared. I am simply not the same colors that I used to be. Uncannily me and not-me.

    I have seen my body take a lot from this disease. Many people who are ill are also in a kind of awe of what they, their bodies, can endure: their resilience, as Gay writes in Hunger. Like Gay, I am also thankful that my embodiment has made me more sensitive to the disabilities of others. When entering a building I automatically check for ramps and elevators. I have not used a wheelchair but I have had joint pain that made it exhausting to walk a single flight of stairs. When speaking with students who have chronic illnesses, I take extra care to accommodate them.  I also disclose to them that I have one too and this seems to make them feel more at ease, more understood. Friends who are dealing with mysterious health problems regularly call me to ask for insight and a sympathetic ear.

    This disease is me. My immune system is attacking my cells. But if I have to actively resist it, to suppress my immune system, then in some ways this disease must be “not-me.” It is still hard to accept that something that is me seeks to destroy me. And yet it’s an idea that I’ve lived with, even though in many ways it’s a ridiculous one. My immune system has no intentions. Nor does it work alone. There is a constant interplay between my genes, health and environment. The stress of my career vagaries, health insurance problems and the development of new disorders has consistently challenged my body’s ability to live with this disease. Nevertheless, this disease and I have survived together for a long time. I have survived for a long time. And I will continue to fight my disease for as long at it continues to attack me.

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    As I write this, the flare is still burning. On some days it is less bright. Knuckles may hurt but they are not visibly swollen. I can even wear my more fashionable shoes. On other days, I have to go back to sneakers. I don’t want to move. I feel a profound and all-encompassing fatigue, and with it, a fear of fading away, of everything going gray when I accidentally close my eyes. I still don’t have my tattoo. And the indefinite deferral is making me lose confidence. On the one hand, I am no longer waiting to enter the kingdom of the well. On the other hand, I am not in a hurry. I still have plenty of time to embrace the wolf. My disease is not going anywhere, which, for now, is the same as saying neither am I.

    Maggie Levantovskaya
    Maggie Levantovskaya
    Maggie Levantovskaya was born in Kiev, Ukraine when it was part of the Soviet Union. At the age of 10, she and her family immigrated to the US, settling in San Francisco. She studied Comparative Literature at Pitzer College and earned a PhD at UC San Diego. She teaches in the English department at Santa Clara University in Silicon Valley.

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