KRONYK

Welp, another relative of mine has been diagnosed with an autoimmune condition. There are so many of us we could start the world’s slowest soccer team.

Really, I should throw this relative a party, because like the rest of us immune gimps, their diagnosis took years to arrive at, because all doctors are drunk and high af. The other problem with doctors is most of them are teenagers.

Part of my personal autoimmune grab-bag is the alluring quality of water around the lungs. It’s a bit of a party trick. Feed me some refined sugar, or give me a glance of my children’s mucus parade, or stress me out by not cleaning my cage’s wood chips for a few weeks, and bloop, waterworld. Whatever structures surround my lungs fill up with fluid like an obedient lock along a houseboat travelway, and all the imaginary itinerants inside me can get where they’re going. Except me— as you can imagine, the sense that I am drowning in my own body makes me turn a little pouty, and I watch trashy British TV.

My rheumatologist, which I can only assume means “funky” (rheum) “atol” (island) “lover” (ogist"), falls short of this title in a few ways. But let me be clear— he is better than most. He is several years younger than me, which makes me feel, when I sit on that inexplicably very maroon exam table, like a pat of butter on hot toast: like I might suddenly—or worse, slowly— slide off, and sit congealing on the floor with very little to say for myself. I generally say very little, in fact, because the only things a rheumatologist are allowed to do are palpate your joints and ask you about the rash you don’t have. Oh, and they can order bloodwork. But that’s it. He must get very bored.

To be fair, the only tools he has to work with are a steroid no one understands, a mosquito bite drug no one understands, and decent hair. I’m not sure why rheumatology is even offered as a subject in medical school, because every chapter in the textbook is just an alternative translation of the core principle “We Haven’t a Clue.” (The phrases “That’s not in our wheelhouse,” “You need to talk to your pulmonologist,” “that’s best handled by your GP,” and “let’s see you again in six months,” together, comprise 79% of what rheumatologists are allowed to say. The rest is commenting on your rad footwear and ordering bloodwork.)

But I’m not here to complain. As every immune gimp knows, complaining is an art, one that should only be deployed in small doses at random-feeling intervals, lest the Healthy Others get the Glazed Look. Once, when I was in bed for nine months to attend to some kind of sideways thing that caused pain and breathlessness, my husband finally said (and we both legit laughed) “we have reached the limit of compassion.”

I not only don’t blame him for this utterance, but I find it more than a little brilliant. What he was saying was “If I keep going down the toilet after you, our children will have no one to make them French toast.” What he was saying was “I cannot imagine what you are feeling, and if I could, I wouldn’t want to, because I have brain cells left.” What he was saying was “I wish I could help you, but I can’t. I will stand here and keep being me, which you seem to like well enough, and that will be the most curative thing, as opposed to me being as crippled by your pain as you are.”

What he was saying was “we have no choice but to live our own lots, each trusting each other to do the best they can with what’s given, and keep meeting at the treehouse at dusk for cheese platters.”

There’s something of respect, real respect, in allowing someone their pain. Not getting your helpful paws all over it. Some kinds of pain, including kronyk¹ autoimmune inflammation and grief, do not particularly go away, so efforts to deny or delay them start to sound a bit dismissive or even slightly batty. Delusional. That’s the word I want. There’s something delusional in some cases about trying to “help” or “be kind.”

At a certain point, the members of the slowest soccer team in the world really don’t need kindness or empathy. They need healthy co-conspirators.

They need people to say “That’s awful, disgusting, horrifying, please stop talking about it, it makes me mad and unhappy” which is the ONLY SANE response.

They need people to be REAL with them, which includes saying “nah, dawg, not going there. Say all you want, and I’ll pretend to listen, but that shit’s awful and I’m not joining you because someone has to load the dishwasher.” Because this more accurate response is more truthful, it actually affirms and validates the slow af soccer player’s reality as being as shitty as it is, which is a gift.

Now the slowest soccer player is free to actually deal with their reality. It turns out kronyk pain is really quite interesting, as long as you’re stuck in the elevator together.

For one thing, it’s capricious as hell. Mine has a problem with refined sugar and emotions. I know others whose chartreuse pain-clouds get pissy about dairy products and the barometer. Who knows what it is they want, since even when you carefully avoid their triggers they manage to traipse around whinging about something new. They’re like toddlers, the pain-gobs— they have ALL the feelings and NONE of the skills.

So I guess I’ve tried to bring what skills I have to the table. Mostly my superpowers have to do with noticing. Recently I have managed to notice something really very awful but excellent to know: it turns out that a lot of times, you know, when I think I’m just cranky or a shitty mom or kind of dim or a very lazy person?— that’s often actually pain. (I am in fact also grumpy and uncharitable and foggy and listless irrespective of pain, but still. Anything that gets me even a little bit off the hook.)

I’ve also been able to be in a long-ass conversation with another forty-something writer friend about pain, specifically to wonder what the difference between discomfort and pain really is. And truly, some days, that line, that delineation between the two, either slides or dissolves, depending on my attitude.

I AM NOT I REPEAT I AM NOT SAYING PAIN ISNT REAL. It absolutely mofo is.

What I think I’m saying is that our disposition towards the realness of pain matters.

I have been disposed, in my life, to fear pain. I have been disposed to experience shame over it. These dispositions, I can tell you without a shred of doubt, make it far, far worse.

If when I feel pain in my joints or my lung area, which I often do these days, I go silent and stare at the floor, I am likely to begin to feel pretty tragic, like, bring out the coffin catalog, might as well.

Shame has a way of erasing a life.

If I get mad, curious, talkative, thoughtful, and open about it, I recover my self, even as the pain sears or throbs or burns, and then the pain is no longer operating as part of who I am, but merely a reality I am subjected to.

My husband is allowed to be annoyed with my pain, and in fact, I am delighted that he is. That irritability he has been willing to give voice is a saving grace: it is an honesty, a truth, and as such, will always be freeing, even if that freedom doesn’t exactly take us cavorting into fields of poppies.

When he decided his best option was to finally get pissy with the unendingness of my pain, he freed me from its specter, in a way— helped to make it merely what it is: sensation. Of course he wasn’t mad at me; he was fed up with the reality of the pain.

This helped me see these two— myself and the pain— as distinct from each other. Roommates, maybe, but not the same entity.

He helped uncouple pain from judgment, which is the main killer of all possibility; he helped uncouple pain from my identity, placing it instead back into its cubby of “stupid fucken thing.”

I can be on the slowest soccer team in the world and still be— maybe even be more of— a formidable person.

So if/when you struggle to respond to me or anyone else in your life with a case of the kronyks, remember:

— don’t say “I’m so sorry.” That makes us feel like we shat ourselves.

—don’t say “I wish it were different for you.” That makes us feel like we’re going to have to clean up the poop alone.

—don’t say “Have you tried turmeric.” WE’VE SNORTED IT MOFO

Try, instead, any of the following:

—“That makes me want to put a pencil in my eye”

— “I’m leaving now”

— “Do you want a donut”

— “Shut up please”

— “Go away”

— “Can I give your rheumatologist a nipple-twister and a wet willy”

— “You’re amazing for not throwing vases all day”

In other worse, I guess, keep it real? That is the most respectful, truthful— and therefore good— thing to do.

Pain—and death, for that matter—aren’t failures. They’re nothing to be ashamed of, and they occur irrespective of every person’s value. So get mad at them, if you’d like, or make fun of them, or interrogate them, or make friends with them, or do an interpretive dance about them. Bring popcorn.

But don’t let anyone you know who is in pain or dying (hint: everyone) suffer needlessly because they somehow believed they should have done better. You are no more to blame for your pain or mortality than the color of your eyes or very bad television shows.

Your disposition towards pain and mortality, though— that does matter.

So tell them to fuck off. And then invite them in for some gossip.

sexy, mobile, bipedal, orange-clad swollen joints ON THE MOVE LOOKOUT

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1. Sometimes when vulnerable I choose spellings that bring to mind 80s rock bands