My Disease is Not a Metaphor
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 fully straighten my arm in the morning. The knuckle of a middle finger puffed out, the skin tight and pink. In a couple of days it would be back to its regular shape but new fingers would be affected, such as an index finger becoming curved, useless for pointing. Shoes started to feel painful to step in, even to put on. My sneakers were well worn but the soles of my feet felt like I was walking barefoot on small, polished stones.
“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. Both of us complained of the humidity, being more accustomed to the California drought. And everyone was sore from sleeping in unfamiliar beds. “This is normal,” I told myself, waking up in the middle of the night from joint pain, “this is not lupus,” a funny thing to think since lupus is my normal. 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.
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 its 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 joint 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 in the kingdom of the well.
“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.”
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. 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 34, 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.
The results of the blood work were a relief. They confirmed what I was too tired to deny. The expat lifestyle was over. I was back in the kingdom of the ill. My body was once again trying to destroy itself. Somewhat more technically put, my immune system was producing antibodies determined to eliminate my healthy cells “as though they were invaders.” My antibodies against my body. The body against itself.
“The Body Against Itself” is the title of a book about lupus that was 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 the first text she could find written by an MD, perhaps out of fear that I wouldn’t do it myself. Once I had the book in hand, I devoured three fourths of it in a little over a day. It was in reading this book that I first learned to think of my body as being “allergic to itself.” I later found out that doctor’s frequently use this analogy when speaking with patients. One chapter in The Lupus Book was titled, “The Enemy is Our Cells,” and I couldn’t help but chuckle 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” 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 is 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 is 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 our ableist culture and language. 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.” I don’t think of myself as feeling my lupus-related pain before knowing, so I would put this a little differently—what I know and what I know are two very different things—but that’s just semantics. Before I ever had a diagnosis I felt pain but I also already had deeply ingrained concepts about what it means for a body to be whole, healthy, productive.
The treatment for my current flare began the same as with all previous—with a rapid-fire attempt to dominate the body with a high dosage of steroids and, in my case, organ transplant drugs. The goal, according to my current 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. I have issues with urine retention so giving a sample becomes a stressful experience as I struggle to not only pee on cue but also obtain what is called a “clean catch.” 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 the medication I take—some must be consumed with food and others on a completely empty stomach. During a flare, I have to be extra diligent but I inevitably forget to take my pills because of carelessness, impishness or frustration with the side effects. 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 frequent good days. One of my friends calls Prednisone “the devil’s tic tac.” It can be quite effective but many experience terrible side effects. For me, it’s anxiety and a whole host of digestive problems. But they are worth the good days, when the pain almost disappears and I think that I am well again, if only for a little while. What I feel and what I feel are two very different things.
“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.”
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 the desire is to fall back into bed or sink into a couch and be still. This is self-sabotaging because 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 awaken 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 eve 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 convinced that it would have to be an image of a wolf. I always hated the word “lupus.” The sounds felt mushy in my mouth. I rejected the idea of this disease, its ambiguity, its association with fatigue. But now that I felt myself emerging from my flare, it felt safe, superstitiously speaking, to externalize my diagnosis. Unlike cancer, lupus is not a metaphor for anything. Maybe that’s because it is best known as “great imitator,” “the great pretender,” “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. And, unless you know what to look for, lupus is largely invisible on bodies and in our culture, a punchline on television shows like House and 30 Rock. My tattoo would be for myself but it would also force me to help make the disease more visible.
I knew 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 others, specifically people with IBD, it commemorates their ostomy. 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 style of Princess Mononoke. I never saw myself as a “lupus warrior,” but I also never had a tattoo so my imagination went into cliché places.
A month later, my symptoms returned and so did the bad labs. The 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. As Proust wrote, “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 often refer to my body in the third person, though less to ask for pity than express exasperation. “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. It provides some comfort 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 is hopeful. 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 the 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, lupus and not lupus, flare and remission. As the war drags on, it becomes less and less clear who the enemy is. Under a regimen of immunosuppressants, the body becomes open to uninvited guests that seek to do further damage, to take over. I’ve had infections in my stomach and on my face during periods of heavy medications. Such a strange situation for an immune system—to have to battle a foreign intruder while continuing to fight against its own.
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 am able to mark time in terms of beginnings and endings when it comes to this disease. There is no day on which I wake up and know that a flare is over. Nor does the end of the flare, as pronounced by my doctor after looking at blood and urine, mean an end to pain, or to the overwhelming tiredness 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 of lupus right now, in the midst of a flare. 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 as an inextricable part of my identity. This is not a source of exceptionalism or pride of me. It just is. I have seen my body change as a result of this disease. My knuckles have become larger. My skin is chronically pale and gaunt. I am not the same color that I used to be, because I hide from the sun and because the color from my lips and cheeks simply disappeared a little while after my diagnosis. 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 Roxane 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 friendly ear.
“It provides some comfort 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 is hopeful.”
This disease is me. My immune system is attacking my healthy cells. But if I actively have to 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 is a ridiculous one. My immune system has no intentions. Nor does it work alone. There is a constant interplay between genetics, 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, myself, for as long at it continues to attack me.
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. 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. A good friend with a different autoimmune disease had her tattoo planned in 2008 and because of financial constraints and surgery only saw it completed in 2016. 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.
