where does it hurt?

I dread the doctor. At this point I can’t decide if it’s from traumatic memories of my brother under the knife and my mother taking her last breath, or if it’s just from reading too much Foucault. Really they feed into each other, so I’ll take both—#habitus.

I read Foucault because his densely worded historical studies on the “birth of the clinic” and “biopower” fit with my experience of death, disease, and illness and help me make sense of them. Duke University Medical Center figured strongly in my early life: first, it was a collective place memory in my rural hometown because many of us would migrate that far inland for chronic healthcare needs. Second, my father had worked there, so my brother and I were born there before we moved to the island. Third, my mother and brother both needed regular check-ups and more from the institution. Fourth, my mother lived in Durham for most of 2001-2002 until she died suddenly on a Wednesday in March. Fifth, I eventually went to school at Duke and even interned in the halls of the esteemed research hospital. Sixth, I would visit my friends who needed follow-up care while they were there, and through them I met and lost new friends. Seventh, I was driving my friends out for Friday afternoon fun on a summery afternoon in May 2012 and was passing the hospital when my dad called to say my uncle died. In my four years of study at Duke, I transformed from wanting to make that world mine to wanting it as far away as possible from my daily life. The weight of the air there, the glare of the hallways, the tears and coughs and sighs and smiles each jabbed me in the soft rotting center of my broken heart.

But we all have experiences like this. With the universalism of modern healthcare, we have all lost someone in a hospital bed, tied to tubes, doused in iodine, shrink-wrapped in bleach-white sheets. And the next day, or month, or year, or decade, we go right back to that death-shrine for a finger in the anus or a speculum in the cervix as needed. Depending on who we are, we may go at regularly scheduled intervals or we may drift in and out of service as our needs press and fade from our consciences. Maybe we’re lucky enough to get diagnosed with something and need extra checks, scans of our insides and panels of our blood and samples of our stool and buckets of our piss to ensure that all the levels are right, give or take. Even luckier, maybe we know something is wrong with us—we feel pain, we feel fatigued, we don’t feel like ourselves—but the doctors cannot tell us what. They flip through our charts and grimace, suggest another test and a follow-up visit in six weeks. We go back and we go back and we go back until we get a label that helps us pay for our pills, or we give up.

This is where I am stuck. “You don’t need to change your diet, just get another CT scan with contrast this time and we can diagnose you.” “The CT scan and your blood panel all came back clear, so we recommend this diet.” “If you’ve been on this diet for more than a year and still have all these problems, then this serious chronic disease hasn’t been ruled out.” “I don’t think it’s that disease, it’s probably just hemorrhoids.” I go back and forth. I drink metal and lay perfectly still in a radiation jacket. I saran-wrap the toilet bowl so I can drip diarrhea from the wet plastic into a small sample tube. I wrap my head in a goopy electrode cap to map the insides of my broken brain. I drive to appointments fifteen minutes away, an hour and a half away, in the early morning, in the evening rush hour, every Tuesday and Wednesday afternoon for twelve weeks. I show up early, I show up late. I cry as I try to answer, What brings you in today? I get bills for hundreds and thousands of dollars per visit; I resubmit my claims to my health insurance. Rinse, repeat.

In The Birth of the Clinic, Michel Foucault describes a central shift in medical epistemology around these opening questions. Amidst the early conceptions of “humors” and more generalized, holistic medical models of the 1800s, French physicians would ask their patients, “What is the matter with you?” As germ theory began to reshape understanding of illness and disease around specific pathogens and agents of transmission, medical examinations became similarly focused and concretized. The question became, “Where does it hurt?” This question drives the medical approach to testing today. Scan the whole body and it will light up red—or black, or blurry gray—where something is wrong.

Body-mapping and literally pointing to pain in this way looks good in medical textbooks, but it often has little “clinical significance,” or meaning in the patient-physician relationship. In my personal experience with pain, pointing to where it hurts has been very difficult–I usually start by rubbing my whole abdomen in a swooping circle from stomach to colon. When I was admitted to the hospital for my pain, it was because when they told me to specify I pointed to my lower-right abdomen, where the small and large intestine meet and where the appendix lies in sinister wait. I stumbled into an urgent care clutching my side and I barely made it to the reception desk before they asked me where it hurt and told me they wouldn’t see me. Hunched over the fireball that could be my poisoned appendix, I nodded okay, hobbled outside, and called my aunt to take me to the hospital. I had a feeling my student insurance was no good, and I was right—after an overnight stay and a day’s worth of Harry Potter movies, the doctors said my symptoms could be treated with rest and a white diet at home. This was the formal beginning of the past two and a half years and counting of abdominal pain through every stage of digestion, so all the time.

So where does it hurt? It hurts in the lining of my gut, from stem to stern; it hurts in my swollen organs, pressed by inflammation and bloat; it hurts in my joints, undernourished, and my muscles, undernourished, and my head, undernourished and dehydrated; it hurts in my habits, that fall to the bedside when I’m stuck in the fetal position; it hurts in my diet, now that eating is a discipline of musts and must nots; it hurts in my social life, because I’m bed-bound or grumpy or tired or any combination thereof; and it hurts my pride, to feel so wounded, to submit my ego before this god of pain and still come out bruised in so many ways. During meditation lately, I try to isolate the pain—not in one place, but throughout, connected like a spider web or a tumor—and hold it, gently, in my flesh of my mind. I imagine a glowing membrane floating around my pain, separating self and other, allowing us to coexist with a little distance. The membrane undulates with the energy of my focus, massaging the pain-mass in gentle cycles. I use my inhalation like a pillow to bring comfort against its sharp edges, and as I exhale, I try to relax into the poking pricking prodding anchor of twisting thorns that are my sides. I feel all the little muscles that shore me up and I let them go; I stop pushing back, I stop holding on, I let go. The glowing white membrane of my mind has helped calm the pinky-yellow fist of hurt that emanates throughout my life now, uncontained and uncontainable by any map or words or body.