When I lost most of my sense of smell, I began to realize that things I thought I could still smell/taste were actually

We seek out experts to translate our pain to us. Experts use blood tests and imaging to tell us what our bodies are already telling us. These stories are well known and rational. They have treatments but no cures. These stories are supposed to have endings — happy endings. But the body keeps telling us and nothing will shut it up. Sometimes it tells us to death.,To talk about pain, we have to refer to some other pain — one that is easy to picture and usually involves a tool or weapon, like a knife, axe, or hammer. To talk about pain, we have to distance ourselves from it, separate via violence. Pain is happening to us rather than something our bodies are doing.,The world of medicine clings to this story of cells and organs—even when our bodies are telling us that pain and chronic disease extends far beyond the body into food, culture, environment, politics, work. The coronavirus pandemic has made this an obvious reality. The coronavirus pandemic has made this truth an emergency.,What I know from my own pain is that this story we have been telling ourselves about our bodies and how they work and don’t work is not true. If you’ve read Foucault, you know that medicine is a way of looking at and understanding and controlling bodies. Medicine makes its own knowledge or stories about how bodies work, how they don’t work, and how to make them work again in a way that is productive. These stories are usually very linear, very straightforward, rational: Something happened to you/you did something > body is damaged > diagnose cause of damage > treat disease/damage with some chemical, surgery, or treatment > cure.,I have chronic pain and a chronic illness. I actually have several chronic illnesses (celiac disease, Addison’s disease, endometriosis), but the “underlying cause” is still undiagnosed, so my pain is questioned, interrogated.,Patients on medical TV shows are not human. Patients are there only as a mystery to be solved by torturing them with invasive, violent “tests” (House) or as lessons for doctors to learn (Grey’s Anatomy). House’s constant refrain, “Patients lie,” seems to be the overarching narrative for medicine. Only patient bodies, divorced from their messy selves, probed by instruments, translated by physicians, can reveal the “truth,” and only via physician expertise. No one ever asks if the physician might be lying.,I try to come up with a description of the pain in my feet without using a metaphor for a physical attack or accident, the typical ways of explaining pain (sharp, stabbing, burning). I finally find its description in another pain: that glowing, aching burn after a day running and falling on cement as a child, catching myself with bare hands. Feet and hands throbbing at different frequencies whether or not there is a visible abrasion, the skin screams, the tissues yell, but only in a voice I can hear. A memory only I can access.,No cell or gland is sitting in the body sending out orders to other glands to make more or less. There is no hierarchy. There are just entangled systems interacting. We can affect these systems indirectly by putting different things in our bodies (food, supplements, drugs, exercise, toxins, poisons), but when you’re dealing with entangled systems, there is no straightforward way to fix anything.,If pain is another sense, then there must be a pain organ that can be located. That organ seems to be the brain; although sometimes I am sure that the pain organ is outside me, somewhere I can’t see. The pain organ is out there, sensing things I cannot, sending me overwhelming, terrible signals I can’t interpret or understand. The pain organ is not just in the body, but in the culture, the media, the economy. The pain organ tells us what pain is, what is painful, how to be in pain.,When you are in pain, you are no longer the subject; you are the object. Pain makes us objects and unreliable narrators. But this isn’t a truth; it’s a construct. Someone benefits. Someone profits. This is the pain economy.,So, no, seeing that Trump had gotten more immigrant votes in 2020 than 2016 didn’t surprise me. After all, when I attempted to talk to my own family about his xenophobia my mother’s reply was “Oh, he doesn’t mean us!” There’s always an immigrant group on deck for achieving whiteness. They’re voting for their turn at bat. And my family did indeed vote for him. But when you say that immigrants don’t vote in their own self interest that’s not true. We are voting in our own self-interest. We understand how this country was designed to work. We’re playing by the rules you set. We did, indeed, learn it from you, Dad.,All of this assumes that what we understand as “healthy” is normal. That normal is normal. Without normal, illness doesn’t exist. Without the blank slate of no pain as a starting point, pain is meaningless. But of course, it could be the other way around: Pain is the only meaningful communication, and we are taught to ignore it.,The thing I’ve discovered since finding out I have an endocrine disorder is that the body doesn’t work at all the way we’re told it does. That story of cells and organs telling other organs what to do and when (like little individuals making rational economic choices) is fiction. These systems (glands in the endocrine system, the brain, etc.) are all entangled in feedback loops. The pituitary does its thing, making the proteins, hormones, enzymes, and other chemicals it makes with what’s available. Those chemicals are then taken up by other glands that make their own things. If there’s too much of one thing, the other gland will make more of whatever it makes because it has more stuff to make it with, or sometimes this will indicate a threshold and it will make another chemical that another gland uses to make a chemical that causes another gland to make less of something else.,The chronic monthly pain of menstrual cramps is ignored, or worse, by physicians. Despite my diagnosis of endometriosis and two laparoscopic surgeries that did nothing but verify my diagnosis, neither my OB-GYN nor my general practitioner will prescribe pain medication for menstrual pain. Is this where my body learned to do pain so well? So well it can’t stop? Why would you stop doing something you were so good at? My body is a pain expert. My body is a pain machine.,But what if pain is another sense we never learn to understand or interpret? Maybe all this is sensory information about something “out there” that our other senses can’t perceive because of distance, or time, or dimensions. Maybe something in our environment is “pushing” on this pain sense that lights up, but doesn’t explain. Our minds, used to the dull comfort of painkillers and analgesics, can’t translate the communication. That sense, that information, is lost to an amorphous, terrible presence that won’t let go. A ghost is warning us, yelling at us, but we don’t understand its language.