December 25, 2025

The laccolith shoulders this inelegant sky, nothing to write home about, as if this weren’t home now but that other place, the one I’m from, a town that’s rotting building by building, foundation by foundation, the fences, the red brick, the sweetgums and their dejected seeds. But mostly the psychiatric hospital, which the state left to vandals years ago.

Where I live now is less town than scrub, less scrub than sand, less sand than canyon. Plenty of room for a word to get lost, to go out on the air and never reach a listener but also never boomerang back to the speaker who stands, silent, beyond language, at least for a spell, isolated from everyone, including themselves.

That’s when the laccolith comes in handy, a kind of giant anchor for thought, for yearning. Headless under dark clouds, the color of night before night falls. A heavy future, a heavy past, a sense of always about it that makes humans seem like baubles, a bracelet of seals surrounding a whale in a faraway watery world before one slips into its mouth unnoticed.

What rises here rises in the distance, with its monzenite and spruce, big-eared bats and fir, bitter cherry, dollarjoint cactus, pygmy rabbits, sandweed, spleenwort. We’ve never been liberated from names or naming. In my ignorant past, I didn’t learn what to call things or what to call myself. Cardinal was red bird. Finch was sparrow. Father was father. I was daughter.

I read that if you think enough about a relative, your genes flip on and off to become more like theirs. Ten minutes a day for thirty days is all it takes. In case that’s true, who should I think of? I’ll take my chances with my mother, the way the white-tailed antelope ground squirrels take their chances with the feral cat when the neighbor’s trees are heavy with apricots in late summer. At least her genes helped me survive him.

Pistachios escaped cultivation in nearby mining towns and made their way up into the mountains. Birds, the first landscape architects, move them around the foothills, where they grow like bonsai. Humans spread from place to place, trying to find and lose ourselves. We look for footholds. We lock in. Even if we only grow a little, it’s something. A small life is better than none at all.

Horses and cows come and go here, the way they do where I’m from. My mother came and went, into and out of the hospital as a nurse and sometimes as a patient. Those buildings feel like her body rotting, returning to earth with no dignity. Her broken windows. The word PSYCHO spray-painted on her side. Her interior waterlogged and full of God knows what in the one-time hospital chapel that hasn’t shivered with song in decades.

Inger Christensen says there is war all the time. There is war. There is war. War in the cells. War in the genes. War in the heart. War in the mind. War in the family. War in the mother. War in the father. But there is also deerweed and spikemoss, manzanita and mat muhly. There is histone modification and methylation, expression and heritability. There is asbestos and lead, observation hatches and safety glass.

There is what happened and what passes for what happened, in memory, in polite company, in our palm lines, in our bloodlines. There is war all the time, even under new paint and old dirt.

A Pound of Honey

There are black vultures in parts of Oklahoma. Tell me that’s not a reason to move back there.

Your near rain is my far rain. You, there. Me, here. Native sparrows gather in the wildlands behind my house as winter surrounds yours. They say what you won’t, what you can only feel. Cold, they say. Seed. Wind, they say. Wind.

Something happened a couple of days ago that has me so shaken I woke in tears this morning. It’s related to poetry, to poets. Of course it is. For my health, for my life, for my future, I need to limit who I’m intacting with, where I’m publishing my work, and where I’m spending my time in poetry and as a poet. I support kind, generous, compassionate poets and the journals and presses they run. I will continue to support those poets, journals, and presses. But all the rest? It doesn’t have a place in my life. I’ve seen enough. I choose a different approach to writing, a different community, a different way of being in the world.

Watching a baby goat take a shower is how I am.

For only $69.99, you can send a bag of mystery bones to someone you love. So there’s that.

I’m spending Thanksgiving with my loved ones: the life partner, our dog, and Bo Burnham.

Despite everything, I’m thankful for everything.

My poems are like webs I weave under every bridge, every cliff, here in canyon country. They’re not just for me. They’re for everyone who lives here and needs something to catch the light when they look down, when they find themselves leaning forward.

Ironically, I really need a paperweight right now.

In a stunning turn of events, I don’t like handblown glass paperweights as much as I thought I did.

I dreamed I was made of cotton and kept pulling parts of myself from myself until there was no me left.

Marbles are so emotional. One member of the marble-identification group shared a note a woman wrote about the marbles she played with when she was a child in the early 1900s. Her name was Lulu. She kept her marbles and note in a face-powder box. Another person found a coin purse at an estate sale with three wheat pennies and a single marble inside. The poster writes: This was somebody’s treasure.

I dreamed I married my husband’s brothers, even the dead one, and was also an evil clown is how I am.

I just joined a marble-identification group on Facebook is how I am.

The life partner woke me up eating a pickle on the other side of the house is how I am.

I don’t have a lot of words right now. It took me twelve hours to get out of bed and onto the sofa today and another two to make it to my desk. Now, I’m headed back to the sofa and then back to bed. It is very hard to be outside of language. It means I’m outside of hope. It’s going to take some time to come to terms with that feeling, if that’s even possible.

I don’t know who Facebook thinks I am, but it’s trying to send me a vacuum-packed cow brain in the mail. Also, a pig heart in its pericardium. A sheep-organ set. A turkey gizzard. Petrfied snapping turtle feet. A cat in a box, a skinned cat, an economy cat, a pregnant cat, a small cat, and a cat skull. A cut-open dogfish shark. A sea squirt. Half a sheep’s head.

I just misread something as Mr. Bananajeans, and now I need to find an animal I can call Mr. Bananajeans.

The life partner saw the two-person steam sauna I put in our Amazon cart and removed it is how I am.

In my despair, I put a two-person steam sauna in my Amazon cart is how I am.

Lines from my dream: Alive to the moment, / unaffected by the heat, / penetrated by the Midwestern sun / pocked with chicken-laden pastures, / I wait for a rapture that never comes.

I’m a little bit grumpy. The life partner and I are having a funeral tonight for the part of me that can no longer live safely in the world, but he keeps saying mixed weenies over and over because, hours ago, that’s what he thought I was saying when I actually said McSweeney’s.

Grammarly says I wrote 122,765 words last week. Really? Where are they?

I live in poetry. I survive in prose.

Maybe I cast light on poetry’s shadow. Maybe that’s part of the problem. Come to terms with that shadow and with what you are in response to it. That’s the work that must be done before understanding and integration can occur at the individual and collective levels. Don’t blame me for the shadow. I didn’t create it. I am not it. You’ve conflated me with a system, with you.

I dreamed my ex told me he couldn’t choose me because all choice is limitation and restricts freedom. I’ll take you for now, he said. But I don’t choose you and never will. He said this as I cleaned the dirt from his boots off his favorite ottoman.

Ten years is nothing to eternity.

I don’t think I’m ever going to heal. I don’t know if I’m even going to survive.

My love is in my feet today so it can hit the ground as I walk.

My neighbor blows all the dust down the street and back into the wildlands.

As hard as it is at times to live with empathy, I wouldn’t want to live without it.

During the election coverage, I rubbed my boobs on the TV.

While you sleep, bees will honey your lips the way they did when Plato was an infant. Then you will kiss me sweet, love me sweet. I will die sweet on your vine. Oh, sugar. Oh, conjecture turned confection. Do not tell me why you are bad for me. Waggle. Buzz. Make my whole body vibrate. There, there, little love, little bee. Feed me.

              Two million flowers
              make a pound of honey
              a riot of blossoms

If those who are being harmed refuse all collective language to describe those who are being harmed, those who harm will continue to harm. Collective language leads to being seen collectively. Being seen collectively leads to acting collectively. Acting collectively leads to change.

              Sand at the foot
              of the mountain forgets
              it was ever part mountain

Frictions

“Nothing about us without us.” That’s a guiding principle in the disability-rights movement. It applies to the mental-health justice and recovery movements as well because mental-health issues are often disabilities for those of us who live with them—sometimes because they are truly disabling and sometimes because our cultures disable us, our communities disable us, and those around us disable us because they don’t understand us (or try), don’t include us (or try), discriminate against us (often because of unexamined or dismissed bias), and subject us to their versions of who we are, which happens daily through language and actions and the way real and conceptual spaces are structured.

I bought a clicker, one of those old-fashioned ones that employees at the academic library where I worked in college used to track how many people came in each day. I’m going to use it for two weeks and track how many times I encounter instances of sanism, both in real life and on social media. I started doing something similar last week by making ticks on a piece of paper. But I like the idea of using a clicker in part because it’s an object I can hear and feel as I operate it, in part because it fits in my hand, and in part because it’s a bright color. I have the kind of sensory processing that appreciates those things. The clicker also feels more formal and official, and I can use it even when I don’t have a pen and paper with me, which makes it more practical. I may include notes about each instance, including the context, date, and time.

OK, I actually bought six clickers in an array of colors because they came in a set, but that’s beside the point. You may think that’s too many clickers. I don’t. I’m mildly tachycardic right now just thinking about their arrival. There’s a black one and a green one and a pink one and a red one and a white one and a yellow one. I’m actually trying to humanize myself in this paragraph and the last one because I made some big assertions in my opening paragraph, the kind that make people (in this case me) unlikable mostly because they fall under the information you didn’t ask for that I think you should know category but also because they may apply to you or those you know rather than some far-off “they” that we can all join in both hating and distancing ourselves from together.

“Nothing about us without us.” I take this principle seriously. It’s like no taxation without representation, only it’s like no characterization, no proclamations based on misinformation, no policy decisions, no representations in the arts and the media, no casual or formal conversations, no application of diagnostic labels especially when used in a pejorative manner, and no limited or completely erroneous lay insights without our representation. That means we are centralized, not marginalized. We are present, not absent. We are heard, not talked over, not silenced, not discounted. It means if we say there’s an issue, you listen. You don’t shift in your seat or put up a wall or fail to respond or shift blame to us.

I’m no longer entering rooms where there are frictions only I appear to see and concerns only I appear to discern, one thousand frictions that are invisible to those who are not queer or neuroatypical or living with trauma or serious mental-health issues. That doesn’t mean those frictions don’t exist. It just means they may not exist for you, and if that’s the case, I’m happy for you. I’m glad a room is just a room is just a room. But your inability to see what others see, feel, and experience in those rooms—your failure to cultivate literacy about the things those who are oppressed and marginalized have to see in order to survive every day—is part of why rooms continue to not be the same rooms for you that they are for others.

These rooms are exhausting. Click click click (click click). If in addition to instances of sanism, I count instances of trans erasure (click), ableism (click), neurotypical bias (click), discounting of women and those who are female-bodied (click), jokes about diversity (or the lack thereof) in a space (click), and more,* there will be no end to the clicking in too many rooms, even rooms full of poets.

It’s impossible to know which rooms will be full of frictions. I’m trying to figure out what clues I can look for ahead of time and to develop a matrix I can use so I know when to call any given room quits. I no longer believe I can change hearts and minds with my presence, my words, or my work. I feel like, more than ever, I’m in a box called “crazy” and that terrifies people, no matter how I live, what I accomplish, how I treat others, or how wonderful folks think I am before they learn I have a DSM diagnostic label or that I’m queer or that I’m neuroatypical in numerous ways. I’ve seen that semipermeable membrane more times than I can count: the one where inclusion becomes exclusion and being part of becomes being removed from.

I feel like my attempts to address frictions only lead to more frictions, many of them in the form of irritation, denial, resentment, and even fear and disgust. But I will do what I can until I realize I can’t do any more. Then I’ll leave before I accept my own erasure and even start erasing myself. I can’t abide that or any other form of complicity.

I’ve mainly seen this level of friction in Utah. At least in other places, my experience has been that I become more human when I talk, when I write, when I take part in things. Of course, I was largely in the closet about my bipolar until two years ago. That may be part of why people accepted me as a human being and not as an amalgam of their stereotypes, biases, and misunderstandings about bipolar. Who knows what those places are like now, in this new world that has us all doing the work of marginalizing and dehumanizing others on some level.

The rooms with poets are the ones I must approach with care above all the others because I need to believe in poets, even if that belief is misguided. I’m not ready to let go of that yet. I know better. I think I know better. I want to know better but, more than that, I want to be wrong. I want to believe in poets the way some people want to believe in God. It’s like that for me.

I also can’t help but see something else in those rooms, wherever they’re located: a kind of arts-driven traveling medicine show meets multilevel marketing network. It’s not quite either of those things, but it does feel like a system that created itself and now uses its existence as a way of validating itself, one that enriches the few and relies on the many, and one that’s unhinged from actual oversight or governance by the institutions many of these poets actually work or once worked for, which means those institutions will not act based on anything that happens, up to and including sexual assault, in or near those rooms. It’s hard not to see it like that, especially after some of my personal experiences in such rooms, which makes it even harder to find spaces that are safe and poets who are doing good work in those spaces.

—

* I’m just listing ones I’ve encountered recently.

Salt Pyramid

In Hurricane, Utah, two dozen or so children and their parents were playing music and cheering drivers on from the side of the road. They were waving homemade signs that said things like “You Matter,” “You Are Loved,” and “Keep Going.” We drove past them twice on our way to run an errand. I cried twice, that I did.

I love my new phone Aluminium so much that I have a special stuffed dragon whose only job is to cradle her all day. Was she in that cradle just now? No. Did I knock her over and make her fall on my keyboard screen first? Yes. Is she OK? Too soon to tell. She may be scratched. Her protective cover flap wasn’t pulled over her darling face. How do I feel about myself right now? Not super, dude.

I wrapped my king-sized chenille blanket around my waist and am wearing it like a sarong is how I am.

Sentence from my dream: Like gods in Greek myths, we are gilded, guilted, and gutted.

You’d think I’d put all my dopamine to better use, but no. I make fiddly spreadsheets.

I’m doing a deep dive into facts and fictions about the Osage orange is how I am.

A list of my bad habits:

1. All of them.

Had a wild night. Didn’t take my mascara off until 10:12 p.m.

I got stars on my ceiling, baby. I got a nebula. Come over and be one with everything.

I wrote this in 2008 when everything hit the fan. Well, not everything, clearly. There’s a lot more on that fan now, and more is hitting it every day:

“If you have made the choice to be a poet, you have made the choice to enter into a certain way of being alive. Don’t forget that. If we forget that, we are lost.”

I put my hoodie on backwards and had the life partner zipper me to my office chair until I got my chapbook No Sea Here finalized and off to Moon in the Rye Press.

It worked. The file has been finalized.

And I’m still zippered in. I kind of like it. Am I in a dominance and submission relationship with poetry? Of course I am.

The new fire alarms the life partner installed because the old fire alarms kept going off In the middle of the night just went off in the middle of the night. I fell over trying to get my jeans on so I could assess the situation. My left foot got caught up on the hole in the knee, and down I went. Lexi is in wild-animal panic mode. The life partner is basically sleepwalking around the house in a daze, still wearing only his boxer briefs.

I just read a poem about birds by Lisa Bickmore to two birders and their pet bird. Don’t tell me poems can’t be part of our daily lives.

The life partner is outside with two birders and an actual bird who are applying bird-safe film to our windows. Huge thanks to Great Salt Lake Audubon for helping us get this film up before the winter birds arrive.

For those of us who enjoy a broader than average* spectrum in terms of mood, energy, and intellect—which can be both a gift and, at times, a difficulty—you’ll be happy to know the fall equinox is tomorrow. That means day lengths will level out, so we will no longer be in freefall day after day where light levels are concerned. You did it. We did it. Now let’s rock fall bigitme.

—

* Whatever average is. That depends on who’s making that assessment and according to what criteria.

𐎼𐎤 𐎠𐎱𐎤 𐎥𐎨𐎱𐎤
𐎼𐎤 𐎡𐎸𐎱𐎭
𐎼𐎨𐏂𐎧𐎮𐎸𐏂 𐎠𐎨𐎱

I’m trying to figure out cuneiform syllabograms in case we need to learn a secret language, but I don’t think any of this is right. It’s supposed to read:

we are fire
we burn
without air

Fall hard? Get up harder.

The life partner to me just now: Will you smell my thumb and tell me if it smells like peanut butter?

My heels are so rough I tore a big gash in my fitted sheet while I was sleeping. Again.

I wake with my underwear somehow so much the victim of overnight shifting that it’s 100% not where it’s designed to be and 100% where it’s not designed to be.

I may be the Utahn Utahns don’t want, but I’m still a Utahn. The past few days have proven that to me. I’m saying things like “my community” and meaning it.

From MedPage Today: Doc Has Sex Mid-Surgery.

This country has jumped the shark.

I was told this morning that I’m borrowing the label of sanism. Howso? I live with trauma and bipolar. I’m not appropriating anything. How can anyone have read my poetry and my writing, including my writing here, for the past two years, as this man did, and not understand that I have mental-health diagnostic labels and lived experience?

A male poet just messaged me to insist their sanist behavior isn’t sanist. It was a vitriolic message based on my posts yesterday about the forms sanism takes. This is an accomplished poet many of you read with, admire, and engage with daily.

Social media was 4channed years ago. Our culture in general is more 4chan than most of us realize. Our politics are def 4chan.

This week, I’ve been told I should be euthanized. I’ve been told I’m spreading hatred. I’ve been told I’m the problem (in reference to the shooting). I’ve been told I seek easy answers. I’ve been told I want to stay in my comfort zone. I’ve been told I’m responsible for Southern Utah’s culture, including its flaws and limitations.

We say we don’t know anything about 4chan culture, but so many of us are 4chan to a T. Like the boys and young men the 4chan subculture targets, we’ve made a hard turn away from compassion and toward a nihilism that has no end other than destruction—of each other and the world.

I’ll never believe my life has no purpose and love has no meaning, so 4chan me all you want. You won’t turn me.

To every thing there is a hot take, and a time for every hot take under Heaven. But once you have actual information, the time for your hot takes is over.

Intelligence in part means seeking out and synthesizing new information rather than clinging doggedly to what’s outdated.

What you left inside me: nail clippings, cigarette butts, used condoms, whiskey, anything that oozed from you and your friends.

When I die, preserve my mouth so science can thaw it one day and remember what it sounded like when people fought, when they screamed.

Print me out some new lungs so I can scream better, scream harder, scream longer.

Brian Kilmeade, are you sorry? Are you really, really sorry? Why do I have a hard time believing those words just slipped from your lips and that you know the first thing about what it means to be compassionate?

I’m commiserating with the screeching white-tailed antelope ground squirrel is how I am.

Men, which I mean conceptually, stop trying to roll your word-stones into my mouth. It’s a Sisyphean task, and I won’t gag on your “wisdom.”

I’m listening to The Crystal Method’s album Tweekend is how I am.

The things you don’t know about are often things you don’t know about because you can afford to not know about them. Ask someone who’s affected by the things you don’t know about. Odds are, they know about those things because they can’t afford not to know about those things. Your erasures and omissions are another form of othering, one that enables discrimination.

I rolled a ketogenic pizza up like a burrito and am eating the whole thing is how I am.

Poets: Be aware of intrinsic sanism in the spaces you create when you bring poets together to share work, to create, to teach, and to learn. Try to identify sanism the way you are able to identify other forms of discrimination. Try to create spaces that welcome everyone, even those with mental-health diagnostic labels and lived experiences.

Fox News host Brian Kilmeade said during a segment about those affected by the July 24 executive order, which affects those who are unhoused, who have mental-health diagnostic labels, and who have substance-abuse issues: Or involuntary lethal injection or something. Just kill them.

It gets worse: Joseph Massey wrote a poem eulogizing Charlie Kirk.

I’m listening to Depeche Mode’s “Clean” on repeat is how I am.

An unexpected Duran Duran song is like a drink of cold water straight from a hose in this dumpster-fire country.

You know who tells you the news before law enforcement and news outlets? Dictators. That’s who.

I dreamed poetry was a pile of salt the size of a pyramid, and I was forced to eat all of it.

Folks who discard you when you speak your truth? Duck ’em. Of course I don’t mean duck. That’s a typo. But come to think of it, also duck ’em.

I’m watching a bat drink tomato juice is how I am.

I love that moment when someone sees me as safe and code switches while interacting with me.

I dreamed a poet was making me do pull-ups in a doorway and yelling, You need strong arms to write strong poems.

Hate speech is never free.

My seer stones tell me there’s going to be a lot of unfriending and blocking on Facebook over the next few days.

The Venezuelan boat turned around. It turned around and we shot it. And here’s a face cream. And here’s an AI that’s made to be you and that can fix you by being you even more than you are you. And here’s a fob you can use to secretly record everyone. And here’s a deal for seniors. And here are some fitness classes. And here’s a thing for stripping the leaves off rosemary. And we shot the boat. And we hit it. And it sank. After it turned around. We shot it better than ourselves, better than we are at shooting. We are AI made to strip the world. We are recording you. Seniors are a deal now more than ever. We make them wear our faces. Our fitness depends on them. Leave secretly or we will hit you, cream you. After you turn around, keep turning. You’re out of thyme.

At least my brother gave me a unisex first name. And my family says it the way that’s typically associated with the masculine pronunciation, “DAY-nuh,” as opposed to the feminine pronunciation, “DAH-nuh.”

Why did my brother name me? There’s a long story behind that. Of course there is. In my family, there’s a long story behind everything. Our stories are like arm fat just waiting to be squeezed out from behind a tightened tourniquet and into the light of day.

Your memory keeps my body on its knees.

It’s only 80 degrees here in the desert this morning WHERE IS MY PARKA

It’s like everyone’s trying to get through the gate even though there’s no fence.

Why didn’t anyone tell me there are more than six stress patterns in poetry? That’s all I’ve been working with for years. I didn’t even know about the existence of the amphibrach, antibacchius, bacchius, cretic, molossus, and trilbrach. Who here knew about any or all of those?

I mean verse is right there in the word for all that is. It’s not the uniprose, for crying out loud.

I just saw a horrifying ad here on Facebook for an AI twin. It’s supposed to be a copy of your mind and train you to know yourself more deeply than you know yourself—by being you. Get me out of this skibidi timeline.

It just occurred to me that establishment poetry is a function of institutionalism. Institutionalists created it. Institutionalists perpetuate it. Institutionalists seek it out, dream about it, crave it, feel incomplete without it. It’s like a government in that way. Or a religion.

People are yelling at Mitt Romney in a Salt Lake Tribune post here on Facebook, and I’m all ready to go defend my man.

My doctor’s medical assistant sang me “The Name Game” song using my name today. So yeah. I’m going back there.

I found a fascinating thesis about Communism, poetry, and the Oklahoma Writers’ Project from 1935–1938.

Corn moon has everyone acting happy in St. George, Utah.

Corn moon had me nightmaring about poets in the wee hours. I was doubled over from physical and existential pain on the floor of a library in Cedar City, Utah. Poets were kicking me as they walked by. A librarian finally opened a nearby elevator and rolled me into it so I’d be out of the way as the poets continued having their important discussions about poetry.

Trans people are people.

I see the poetry establishment as a nucleus. As cells age, the nucleus of each cell accumulates abnormal molecules that are toxic to the cells themselves. So yes. The poetry establishment—the core of poetry so many aspire to, which is part real and part myth—is a nucleus, and an old one at that.

He’s a comics scholar and one-time critical theorist who’s into graphic medicine and knows which way the toilet paper roll goes? Oh yeah, baby.

/me bites lip

I love the folks over at Bluesky.

This afternoon, I was listening to my favorite Bo Burnham song, “All Eyes on Me,” when the life partner interrupted me to tell me that—wait for it—I need to remember to change out the new fire alarms in 2035.

I’ll be dead by then, he said. You’re going to have to remember to do this.

And this is what I mean when I say ours is a household informed by various and sundry anxieties.

I’m watching an American mink open up Easter eggs filled with treats. This will carry me through the night and into tomorrow.

Through me, my mother is half alive. Through my mother, I am half dead.

I just misread COVID vaccine as mood swing is how I am.

In rooms full of men, my body becomes something other than my own.

Every word I write makes the world both more and less accessible.

Bless the birds who are migrating thousands of miles to their winter lands.

What light is left in this world.

We are ghosts haunting our present with our past.

Updated Immunotypical Privilege List

In 2014, I wrote a piece titled “44 Signs of Immunotypical Privilege” shortly after my diagnosis with common variable immunodeficiency. It’s a compilation of my experiences and those articulated by others living with various forms of primary immunodeficiency. The Irish Primary Immunodeficiencies Association published it on their site and had plans to make it into a brochure, though I’m not sure the brochure ever materialized.

My piece was inspired by Peggy McIntosh’s famous essay, “White Privilege: Unpacking the Invisible Knapsack,” written in 1998. I later updated my piece when “COVID” and “monkeypox” became household names. It’s now titled “46 Signs of Immunotypical Privilege.”

I plan to write a new piece titled “44 Signs of Neurotypical Privilege in the Poetry Community.” It won’t make people feel comfortable. That’s not the point. The point is that it needs to be written, and it matters, and I can’t see how to not do so after what amounts to an executive extermination order against those with mental-health issues. Ask Brian Kilmeade. He sees that order for exactly what it hopes to be and understands exactly what it allows those who hate us through and through to say, including my fellow Utahns.

—

46 SIGNS OF IMMUNOTYPICAL PRIVILEGE

Every day, as an immunotypical person—

I can go out when COVID is circulating without being in a high-risk category that makes me much more likely to be hospitalized, die, or develop long COVID.
I can go out during flu season without worrying too much about how serious contracting the flu could be.
I can see the exponential rise in monkeypox cases and not worry that I might be especially vulnerable to the disease.
I know my immune system will respond to flu and COVID vaccines. I might even skip vaccination altogether without serious health consequences. Attenuated, live vaccines such as the one for monkeypox are safe for me because my immune system works properly.
I can read about measles resurgences without feeling alarmed. After all, the measles vaccine isn’t contraindicated for me, and I know my body has mounted an immune response to the disease.
I can touch door handles and other surfaces in public without much concern.
If I get a slight cough, I don’t have to worry about it turning into bronchitis or pneumonia.
My health status never goes from relatively normal to life-threatening in a matter of hours.
When I take antibiotics, they work quickly, and I only need one round.
I haven’t been on antibiotics dozens or even hundreds of times over the course of my life.
I’ve never been on prophylactic antibiotic therapy. I don’t even know what that is.
I don’t have to routinely take medicines such as prednisone that weaken my bones and put me at greater risk for osteopenia and osteoporosis.
I don’t have to wonder what comorbidity might be lurking just around the corner and if it will be a noninfectious condition, a malignancy, or an autoimmune disorder.
I’ve never heard the phrase “immune dysregulation” and don’t have to concern myself with what that might mean.
For me, boosting immunity means popping more vitamin C or Airborne. I have no idea what immunoglobulin is or why it’s essential to the human immune system.
When I attempt to eat out, I don’t have to think too much about how long items are left on buffet tables or how well food is washed and prepped by food handlers.
When I’m out in public, I don’t have to worry when people cough into their hands or without covering their mouths.
I can be sure that, when I go to classes, movies or restaurants, I’ll find a place to sit in which I’m free from issues that exacerbate my breathing problems, such as perfumes, fragrances, and cigarette smoke.
I know I won’t have to pass on social activities because they would put my health at risk.
I know family gatherings won’t pose a threat to my health, even if young, potentially unvaccinated, children are present.
If someone I love is in the hospital, I don’t have to think about when I can visit, how long I can stay, or other health considerations. I can fully focus on that person and their health needs.
I can attend school, have a full-time job, raise a family, and engage in recreational activities without also having to manage the many conditions that would affect me if my immune system didn’t function properly.
I can leave meetings, classes, and conversations and not feel excluded, fearful, attacked, isolated, outnumbered, unheard, held at a distance, stereotyped, or feared because of my immune system.
If I pick up a magazine or watch television, I’ll see images that represent me and my experience of my health.
I never have to speak on behalf of all those who are immunotypical. My thoughts about my immune system can be my own with no need for political alliance relative to my immune function.
My actual and potential contributions to society will not be challenged because of my immune system.
I can go for months without thinking about or being spoken to about my immunotypicality.
I’m not identified by my immunotypicality.
I won’t lose friends who can’t relate to what I’m going through, who think I’m exaggerating about my symptoms, or who just can’t deal with having a friend with my health status.
I know I won’t be discriminated against by employers who neither understand my condition nor have the desire to provide a reasonable accommodation, despite the legal requirement that they do so.
I don’t have to be afraid that, when I talk with others about my health, they will suggest unsolicited supplements, dietary approaches or exercise programs.
I won’t be told by friends, family, and even uninformed members of the medical community that my condition is really just a psychological problem such as anxiety or depression.
I know nobody looks at me and makes assumptions about why I appear to be ill (or well), or why I am too thin (or too heavy), or why I am not fit (or manage to stay fit despite my illness), or why I do (or do not) eat what I do (or do not) eat.
I don’t have to explain why I have a lingering cough, why I might sometimes need to wear a mask in public, or why situations and settings that are safe for others may not be safe for me.
Because I have never had to wear a mask in public, I have never been asked to leave a public place because the manager or owner of the establishment believes I am putting others at risk, when in fact the mask is to protect me from the pathogens others carry.
I don’t have primary immunodeficiency, so I never encounter people who make the assumption that, despite the condition being genetic, I somehow brought it on myself through my diet or lifestyle.
People aren’t embarrassed to be seen with me because of my health status.
When I talk about my health, I can be certain that friends, family, co-workers, and others won’t become uncomfortable and change the subject.
My partner doesn’t suffer from undue stress and hardship because they’re my primary or only caretaker.
Nobody tells me I should feel lucky to have primary immunodeficiency because it means I don’t have to work or accomplish anything during my lifetime.
My doctors have seen a lot of patients who are immunotypical. This means I’m not put in the position of having to educate them about my immunotypicality, since they’re already familiar with it.
When I present in a health crisis at the emergency room, I’m given prompt medical treatment, not told I’m merely having a panic attack.
I’ve never had the experience of being misdiagnosed over and over again throughout my life.
I don’t have old misdiagnoses in my medical record that can’t be removed without a great deal of time and effort on my part.
I don’t have to deal with the financial burden of expensive, ongoing medical care and therapy.
I don’t have to face insurance companies that must review coverage for my life-saving therapy before that treatment is approved; that sometimes make patients go off their therapy for months in order for those patients to prove they still have the condition; and that sometimes deny therapy because they don’t feel the patient is ill enough to warrant it, despite documentation to the contrary in the patient’s file.

Jacks

Two years ago today, I came out of my medication-induced blackout at the inpatient psychiatric unit and began working on an elaborate origami project that involved making the Sydney Opera House with a theater and stage inside it. I used paper placemats and pages from a colorful book for this purpose. I was given a copy of the Book of Mormon by the staff, but I didn’t use its pages in my project. It sat in my room idle as I worked.

I wrote and performed rap songs with another patient named H— to the delight of other manic patients on the unit. Those with severe depression were not moved by our artistry. We were good at the rapping, and our antics provided a counterpoint to the aimlessness, the hall-wandering, and the five-minute interfaces with the psychiatrist each day in which he blamed us for having depression or bipolar.

I used a deck of cards to map out human networks that are responsible for abusing and trafficking others. The kings and jacks were big players in those networks, and they were also stand-ins for my father and his best friend. The networks were very organized and knew how to hide other cards, and themselves, as needed. My father’s name was Jack. He was a jack of all trades, even ones that weren’t legal.

I wrote short poems and made notes about my stay using a tiny pen that only sporadically worked. Pencils, Intermountain. Give patients on B-Ward pencils.

In my chart, the staff noted that I was well-behaved and posed no threat to anyone. I did throw paper at one point, down a long hall, overcome suddenly by how dehumanizing psychiatric care is. Nobody noted that in my chart, but one tech did scream, If you do that again … without completing the threat.

I declare today, September 10, the Day of Origami and Rapping forevermore. Long live folded paper and battled song.

Black Box

I had an exciting thought about a poem at the tail end of a dream, and now I can’t go back to sleep. The fact that poems thrill me after three decades says a lot about poems. Perhaps it’s not just the Earth and sky that last forever, as the band Kansas asserts. It’s also the verse, the line.

I will never remember what happened to me two years ago today because I was overmedicated in the emergency room at Intermountain Health after being turned away when I went to the mental-health access center there for help the day before, but not before the access center kept me in a loud, brightly lit room for 24 hours with no bed, where I was left alone with two male nurses. What a terrifying thing for someone with a history of abuse at the hands of men to endure while in a state of trauma about her childhood abuse. Also, sleep deprivation and exposure to lights and noise, including music, day and night are more in keeping with prison torture tactics than with mental-health care, but sadly, the two are often one in the same. Shame on Intermountain for engaging in such practices.

To top it off, they failed to give me my thyroid-replacement medicine for hours, thereby exacerbating the state I was in by disrupting my endocrine system, which in turn negatively affected my HPA axis. That axis is key to emotional regulation. I don’t have a thyroid thanks to thyrotoxicosis and cancer, so my thyroid-replacement medication is critical. My TSH was already 11mIU/L when I got to the access center. It should have been less than 1mIU/L. The access center made my hypothyroid state even worse by not administering my medicine in a timely fashion.

The ER overmedicated me after I said Joseph Smith was delusional. What I actually said was, Sure. It’s fine when Joseph Smith does it, but not me. I wasn’t being hyperreligious. I was deconstructing religion, in that moment Mormonism, as well as the unwritten social rules that appear to govern when someone is seen as insane, divine, or both. Crazywise, as some call the latter. But not, largely, Southern Utahns, and certainly not ER workers at Intermountain.

That’s the last thing I remember. I blacked out for more than a day, this one: September 9, 2023. It’s a dark, rough-hewn box I can’t open, but I think Sharon Olds’ devil from her collection Satan Says might be inside it. By that, I mean my father.

Folding

This is the two-year anniversary of my stay at the local inpatient psychiatric hospital where the psychiatrist described me as being involved in sex trafficking, as if I was trafficking others as an adult as opposed to having been trafficked as a child. The psychiatrist also said my trauma had nothing to do with my mania, told me in so many words to be a better wife when I expressed my concerns to him about my husband’s behavior, refused to help me get services from the local organization that helps people who’ve survived sexual abuse, and wrote in my chart that I had a poor prognosis because I have no insight into having bipolar.

And he was supposed to be one of the better psychiatrists at that hospital.

This is also the day I briefly saw Utah poet laureate Lisa Bickmore and thought she was some kind of healing Earth goddess, which I still think is the case. When I’m manic, I see essences. Lisa is a lot more than a healing Earth goddess, but she also has the essence of a healing Earth goddess.

These are the final days of my hegira, the one I declared over before it was over. Over the next few days, I’ll be sitting with everything that happened two years ago in a process that’s like folding now and then together the way two ingredients are combined in baking. Not that I bake. I prefer folding time to folding things like whipped eggs and melted chocolate. When I need to eat something, I just eat it. I rarely mix it with something else.

Faltering

In a place that’s lacking in diversity, one that doesn’t cultivate an inclusive mindset at the individual and collective levels, broad-based cultural sensitivity and cultural literacy will falter. That’s what it comes down to for me as I look at Southern Utah through the lens of systems theory.

The cultural literacy here is concentrated in teachings and the culture of the LDS church and influences everything and everyone, even those outside the church. That focus leaves those who aren’t members out of social events and social support systems while tending to reinforce small-minded and small-hearted views, at least in this part of the state, about those whose identities aren’t accepted, aren’t represented, or have been historically misrepresented in and by the church. If you don’t believe that, ask me when slave day stopped being celebrated at the local schools. Ask my why it ever existed here in an area folks still insist on calling Dixie. Ask me about the Confederate flags folks fly and display on their trucks.

The selective cultural literacy here is why I experienced no fewer than twenty-seven frictions when attempting to participate in a local literary event, from five different folks centrally and peripherally involved in that event, on seventeen different occasions. Those frictions rose to the level of discrimination in eight cases. The others involved invasive questions about my gender and sexuality, othering, negating, trans erasure, and trauma erasure. The forms of discrimination included ableism, sanism, and gender- and sexuality-based discrimination.

Nobody here can see what happened. They literally can’t see it. The lack of cultural sensitivity and cultural literacy is what allows folks to feel entitled to probing about my gender and sexuality as if I owe them an explanation, to treat me like I’m scary because I have bipolar, to tell me talking about my trauma isn’t appropriate, and more. These attitudes and behaviors also have the effect of expunging me and folks like me from local events, from the local university, and from the area as a whole.

But they really don’t see it. They have no idea. To them, I’m a troublemaker, a problem, someone who’s just hastily making assumptions, not responding to a suite of valid experiences and real erasures that have been occurring for eight months and, outside this event, for five years, which is when my husband and I moved to Southern Utah.

It won’t change. This place won’t change. But what’s happening here underscores why we need more understanding, not less. More inclusivity, not less. More cultural literacy outside of one specific culture, not more of the same. We need these things across the country, but Southern Utah is where their effects are felt earlier than in other places and more painfully and more deeply and more consistently, all outside of a larger supportive community. There is no larger supportive community here unless you believe those intent on gaslighting you into thinking there is or that there is no issue here that isn’t all in your head.

Beating Back Blackbirds

I went to Storm the Mic tonight at Art Provides in St. George, Utah. This is the energy and community I’ve been looking for here in Southern Utah. Things finally aligned in a way that allowed me to attend. I also read three of my poems. It’s the first time I’ve done so in more than eight years.

It was important for me to read tonight. If I didn’t do it, I’d never do it. And poems can’t just live on the page. They live in us, through us, and between us. We have to give them breath. They move through our bodies by way of our lungs, our throats, our mouths.

Poems are like instruments. You can’t leave an instrument in its case or just open the case and peer inside at all that bright metal or dark wood. You have to get it out and say it/play it.

I left poetry and the poetry community eight years ago after an especially traumatizing situation that made it impossible for me to continue writing. I vowed to never write another poem. And I didn’t until I had a cancer scare last summer and started talking with some friends of mine, poets who never gave up on me, who kept loving me and checking in on me year after year. One night, after talking with one of those friends, I decided to write a poem to wind down before I went to sleep.

“Boys are beating back blackbirds. Houses hoard the sunrise. / This autumn is unmetered, a dream of wind and shovels.”

Those were the first two lines. I knew I was in trouble. Poems were still there, inside me, surrounding me, eager to be transcribed. Poems waited for me, too, all those years. When I returned, they weren’t even angry. They just flowed.

“This room. This rock. This rough sand. On my shoulder. / On my stutter. On my girl skull. On my hinges.”

Oh, I was in so much trouble. But it was good trouble. This time, poetry would be nothing in my life but good trouble. I could tell. I could feel it. I was home, again, in these words that twist and dance and break and stammer all around us all the time. I could catch them and engage in deep play, deep exploration.

Love. That’s what it is. Writing poetry is an act of love, an act of care directed inward and outward: community care and self-care. It doesn’t even matter what we write about. It’s all love, ultimately. Love is—didn’t Thich Nhat Hanh say this—the act of being alive not only within but also because of uncertainty and pain. (I’ll find the quote and update this post when I do.) The upshot is: What isn’t love? It’s all love.

“Night of deep crimes. Day of mirage ceilings. / During each, an orchestra of fire between my ears.”

Darren Edwards does an incredible job hosting Storm the Mic. I’m so thankful for him, for everyone who attended and read, and for Art Provides for letting folks use their space. They are literally providing for artists, poets, and writers when all three are so desperately needed.

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