At that point, I had loved before but I had not been in love. There is a difference. And when you are in love, it is eas

We are all filtering pain all day long. Which pain should I react to? Which pain do I ignore? Which pain will soon be too big for me to see and function around? This is potentially a life-or-death question we answer minute by minute. What if it’s a heart attack? A lethal situation (fire, poison, violence)? The pain organ reacts to each pain as if it were the same level of danger. The pain organ, like the thalamus or thyroid, takes what’s there and makes what it makes: pain.

According to psychology, to love someone means to really care about that person, to be enamored by them, and to really want to get to know them. Love can be platonic or romantic, but it means to understand who that person is and cherish them for it.

The narrative, the metaphor for autoimmune disease, is that the body, for some reason, turns on or “attacks” itself. Which is a strange metaphor because every time the body fights off infection, it turns on itself. Cells of the body that have been infected are destroyed. Autoimmune disorders are really just the immune system doing its job too well. In my case, it sees infection everywhere and reacts accordingly, appropriately. Maybe we need to expand our ideas about what can “infect” us beyond viruses and bacteria. Why do we trust what our own bodies are telling us less than we trust a medical system that sees us as products, as clients who lie?

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.

When I lost most of my sense of smell, I began to realize that things I thought I could still smell/taste were actually memories. I was tasting a memory of guacamole, not the guacamole in my mouth. Maybe pain is a memory too, always past tense coming into the present to tell us how to feel about something.

When I was in graduate school, I changed my PhD topic to autoimmune disorders because I was spending so much time researching them to figure out what was wrong with me. But the more I learned about autoimmune disorders (the useless treatments, the disregard of patients, the victim-blaming), the more I wondered why I was trying so hard to get diagnosed. Autoimmune disorders are, as a category, terribly misunderstood and maligned because our understanding of the immune system is not an understanding at all. We barely understand how it works, including the inflammatory process.

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.

An infection is a foreign body that has entered our body and reproduced itself. This is a familiar narrative, similar to possession by spirits. Now we are possessed by bacteria, viruses, fungi, and our own rogue cells (cancer, autoimmune disorders).

When my wife was in medical school, we took another look at my records and discovered that I had been diagnosed, but because of the way diagnoses are created, no one had noticed. For some reason, a rheumatologist at Cleveland Clinic had tested me for a rare genetic disorder called Muckle-Wells. It’s caused by a defect on a gene responsible for the inflammatory response, the same set of genes involved in disorders like familial Mediterranean fever. I tested heterozygous, which means that I have only one bad copy of the gene, one error. At that time, a diagnosis of Muckle-Wells required a homozygous result — both copies must be defective. But the diagnostic criteria changed about a year after I left the clinic.

I feel like an expert now. As I stumble and zombie my way through the daily, I see others for the pain they’re in. The checker at the grocery, who keeps shifting her weight (she’s forced to stand the entire time), touching the small of her back, aggressively ignoring customers as she tries to make it to the end of her shift. The middle-aged woman who limps just a little, whose smile looks forced. The wince as she leans over to pick up a bottle of vodka, then the inevitable smile and joke as she tries to make light of the fact that she is buying alcohol too. The women who work at the laundry around the corner from us who take breaks on the wall outside to smoke and make cruel jokes about my fat dog before waddling on painful hips back to work.

We talk a lot about agency, but there is no agency in medicine. And if there is, it is always the property of the physicians who insist it is the property of the hospital and insurance companies, who insist it is the property of profit. There’s no personal agency in pain.

If I had been homozygous, I would probably have not survived infancy, and if I had, I would have been deaf by my teens and dead from amyloidosis in my twenties. Instead, I have the less destructive version, which means that my flares, which can be caused by cold or almost any stress, including illness, feel like I’m getting the flu. I can have fevers or just an elevated temp, extreme muscular and joint pain (if you’ve had the flu, you know what I mean), terrible headaches that aren’t migraines but are nearly as painful and debilitating, a weird rash. But doctors really don’t know much about the disorder or how it is expressed in people who are heterozygous. In fact, it’s so rare that I can’t find a physician who will treat it. I now have a diagnosis — but that diagnosis has left me even farther from treatment.

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http://news24.acaps.cat/gms/Video-Orlando-Pirates-Sagrada-Esperanca-v-en-gb-1pvo-.php

jeoma Oluo’s excellent book So You Want to Talk About Race that I’ve used in essays and talks before, and it bears repeating here: “If you are white in a racist society, you’re a racist. If you are a man in a sexist society, you are sexist.” By which she means, if I may mansplain, that people who look like me get these privileges regardless of whether we want or not. I’m quoting this line again because the first time I read it my reaction was that obviously this didn’t apply to me. How could it? I’m so woke! I put up a slide saying I’m an immigrant at the end of all my talks! I am pulling out this quote one more time because of how deeply uncomfortable it made me when I first read it. It covered me in shame. Of course the line applied to me. The first time I read that line I spent the next twenty pages of the book attempting to read what she’d written, but it wasn’t sinking in because I kept going back to that line. I couldn’t hear what she had to say because all my energy was going towards keeping that shame her words had awoken in me from hitting home. I’m also ashamed to say how long it took, but once I accepted them I could actually hear what she had to say. I had to acknowledge and own my discomfort and shame. And that’s when the work begins. Now is the time for people that look like me to be uncomfortable.

On the other hand, being in love with someone usually means you feel an intensely strong and almost inexplicable passion and desire for him or her. Being in love means that you yearn for this person, you think about them constantly and you crave being around this person and spending time together.

There is a relatively new movement in medicine, illness narratives, which is also the oldest movement in medicine. It boils down to listening to the patient’s story. Not simply as a way of gathering information and translating it into medical jargon and insurance codes, prescriptions and pills, but also as a way of allowing the patient to control their own narrative. That this narrative, generated by the patient with the doctor, is an essential part of healing. By listening to the body and telling its story (with the help of a physician who can add to that story with their expertise), we participate in what is an essential part of healing. Bodies need more than to be acted upon.