Health

Water Cracking Air

Happy Trans Day of (Indi)Visibility.

I just saw an ad that read: Turn Your Expertise into Jerome. I was like, Who is Jerome? It actually said Income, but I’m dyslexic and the font was swashy.

The yellow-throated warbler is the happiest of all warblers, and I will fight anyone who says otherwise.

I put a bird in a box
so it wouldn’t be hurt
by the wind

I put myself in the wind
so I wouldn’t be hurt
by the box

—

Inspired by an Oklahoman who put a native sparrow in a box on a windy day because she thought the wind would harm the bird.

I dreamed Bill Knott’s mind had been transferred to millions of pieces of paper. They were lying all around me in a vast room, each one folded like an origami prayer boat meant for a memorial ceremony, but there was no water anywhere on Earth for them to float in.

(ツ)_/¯ I guarantee my reasons for not liking our former sheriff are very different from our local alt-right extremists’ reasons for not liking the former sheriff. ¯\_(ツ)

This public speaker was being interviewed, and he kept saying co-creation, but I heard it as procreation. Imagine my confusion when he said he wanted to co-create with his partner, his co-workers, his friends, his family, and his children.

I’m doing the floss this morning along with a little song I wrote called “Our Shitty Fucking Sheriff Resigned” because our county’s shitty fucking sheriff resigned suddenly and without explanation. I had several frustrating interactions with him when I was dealing with complex PTSD and bipolar issues in 2023. He was unhelpful, clueless, patronizing, and demeaning.

Our shitty fucking sheriff resigned. Our shitty fucking sheriff resigned. Sing it with me now.

Oh, and he resigned on International Bipolar Day. Even better. What a gift. How thoughtful of him. And all I got him in return was this victory dance.

Someone from my weaving group is getting rid of four styrofoam heads, so Styrofoam Heads keeps showing up in my inbox. It’s weird. I love it.

Our little town has gathered to watch a rattlesnake climb the wall of a neighbor’s house. It feels like very olden-times entertainment. The life partner is down there with everybody. I am here with myself confronting the snake that is automated AI results embedded in the Yahoo search that’s somehow made itself my preferred search engine.

Evening, a sun-drenched power line is a whip of water cracking the air.

I just misread breaking news as heartbreaking news, and that should be what all breaking news is called these days.

I’m rage-eating gummy bears is how I am.

I’m threatening my nasal cavity with a neti pot is how I am.

Based on my last couple of Facebook posts, people appear to like poetry thirty-five percent more than they like bacon.

I just misread a beacon of hope as a bacon of hope is how I am.

I ate bread in the shower is how I am.

These days, getting to the end of a roll of toilet paper is exciting. I’m like, achievement unlocked. I literally say that.

I had to buy bigger underwear is how I am.

As an Oklahoman, I want to apologize for Markwayne Mullin.

I am dyslexia strong.

Book title, free for the taking: Plastination.

It could deal with the literal plastination of the body or the figurative turning of a country into something as caustic and inorganic as plastic.

I just misread donor organ as donor orgasm is how I am.

Oklahoma is like one of those relationships you just keep finding yourself in again.

If I didn’t have a spine, I would feel like I was one with everything. It’s this skeleton that makes me feel like a soul clinging to bone, something separate from, not part of, something that will one day break.

You know that feeling when you suddenly have to poop right after you take a shower? That’s how Monday feels.

Alex LaMorie

Poems may be forgotten, but they shouldn’t start out as forgettable.

My history is a burning history in a burning world.

If you don’t care about Oklahoma after reading my work about Oklahoma, then I haven’t done my job as a poet, as an Oklahoman, or as a storyteller.

It’s so windy here in Toquerville that I feel like I’m in Béla Tarr’s The Turin Horse. Wind like this makes me cry. It is whatever my mind is, as Gertrude Stein observes. I am as my land and air is, as my cracking and straining house is, as raw as I felt the moment this wind hit my back in a dream and stripped the veneer of reason from me in one clean and somehow profound motion. I sit in the dark shaking, my heart beating like a wild nestling’s.

Something good happened and I can’t talk about it so I’m just eating a bunch of gummy bears is how I am.

Whenever I have something I want to tell the life partner, he’s like, Is it about gender or poetry or trauma, and it almost always is about one or more of those things.

Systemic issues don’t have individual solutions and can’t be offloaded to individuals who must then bear the burden for the systemic issues. We can’t self-love our way out of abusive, harmful systems or the attitudes they encourage and reward.

Some folks drive like they have donor organs in their cars.

What are these words, even?

Me looking at my own writing.

I worked on the new manuscript more today. Loved it. Hated it. Loved it. Hated it. Loved it. Hated it. Loved it. Hated it. ¯\_(ツ)_/¯

What do you do when you have two manuscripts with presses for their contests and open reading periods? You finish a third one and send it out, too. That’s what you do.

Every time someone attacks me, I just eat dark, leafy greens and grow stronger.

I’m placing a bowl heaped with disco balls in the light and leaning over them, my face cracked across a thousand mirrors, is how I am.

My neighbor is killing weeds with a blowtorch connected to a propane tank.

Flirting with the life partner by showing him my new spreadsheet is how I am.

I smell like barf for some reason is how I am.

I got immunoglobulins all over myself today doing my immunoglobulin infusion is how I am.

I fell into an agave twice after thinking Don’t lose your balance and fall into that agave is how I am.

Word-twisping

That was fast. All fifty of the copies of No Sea Here that Moon in the Rye Press gave me are spoken for. I’m now digging into the copies I purchased at a discount, so I’ll be pivoting to a pay-what-you-can model. I hope that model will allow everyone to have a copy regardless of their ability to pay. I also love trades of all kinds, so that’s always on the table.

I’m mailing the first fifty copies out tomorrow, which means I get to visit the Toquerville Post Office, one of my favorite places in Utah. It sits beneath a steep hill festooned with chunks of basalt the size of economy vehicles. None of them have dislodged and killed anyone, at least not yet. Death by igneous rock is on my list of preferred ways to shed this mortal coil, which I always say in my head as cortal moil the way I used to call my friends who were dating Sherry and Jelly when their names were actually Jerry and Shelly.

This word-twisping is not something I try to do. It’s one of the ways my dyslexia makes itself known. Dyslexia is my mischievous little language friend who never fails to entertain me. It’s wearing a cute devil costume right now, kind of an inside joke. Dyslexia is such a comedian.

In other news, I’m happy to report that some poets are still people. I almost typed pets, which would also not be awful. Poets are sometimes people, sometimes pets, and sometimes a pestilence. I said what I said. Mostly, I was riffing on the sounds of the words. Mostly. Let me have some fun, OK? I’m going on day three of a migraine, which is in turn causing my centralized pain syndrome to flare. This is what I get for being in a body. My body doesn’t know how to have fun. Even my dyslexia can’t make it laugh.

Hi, I’m Dana

Hi, I’m Dana. You may wonder how I got myself into this situation. Not really. That’s just a silly introduction. Speaking of which, consider this my introduction post.

For starters, I’m trans, specifically nonbinary, also known as enby. I’m queer, specifically ¯\_(ツ)_/¯. That’s been shifting over the course of my life, but I’ve mostly landed on asexual with hints of bambisexuality.

I’m female-bodied and am treated like a female—at least in terms of what we’ve collectively decided female-bodied and female mean—including the very not good ways those perceived to be female are treated. In college, I largely wore tuxedos I found at thrift stores, and I had short, blond, young Mary Stuart Masterson hair. That’s the only period in which I was routinely mistaken for a boy, a little English schoolboy to be precise.

What you don’t know is that I’m in drag all the time, and I like it. The man in me likes it a lot but would also like a beard and a man bun and to be totally ripped, which is how I came to marry the man I wanted to be, who eventually lost his hair, so no man bun, but who has a beard that makes him a total snacc and who also has nice guns. I mean whatever those arm muscles are, of course. We are gun-free people. Biceps. I think that’s what I mean.

I live with complex trauma. I’ve experienced abuse and violence on too many occasions for me to count, in part because I have dyscalculia, as you’ll learn below.

I live with bipolar. I’ve known the world through the lens of psychosis, though only for a tiny fraction of my days, thus far, on Earth. That lens has taught me a great deal about terror and its origins but also about love and its origins. Extreme states are extreme but not without meaning. We are meaning-making creatures, after all. We do what we can with what we’re given.

I was given words, which is a tremendous thing. I took them, actually. They weren’t given to me. You’re about to learn about my dyslexia. What that means is language was a fight, and I fought for it. That’s why I won’t give it up again, not even when poets and writers and the systems they inhabit behave badly.

I have learning disabilities, including dyslexia and dyscalculia. (I told you I was about to talk about them.) My spatial reasoning skills are top-notch. I’ve been tested. But my body in space is another matter entirely. I knock about is what I do. I’m dizzy a lot. I fall, literally. I get up.

I just read dizzy as fizzy because of my dyslexia. That’s funny. The idea of being fizzy is a hoot.

When I was younger, I could do calculus but cannot count well at all ever, which is how I once ended up in trouble with the IRS because of how I subtracted something I should have added. They were very prickly about it. I’m not an institutionalist, but I didn’t like being treated like I was trying to rip off an institution, either. My father was a crook. I’m sensitive about being accused of similar behavior.

I’m neurodivergent in other ways and not about to give up that label because some folks in the communities I inhabit don’t like it. I’ve started using a Hannah Gadsby voice as I type this, just to illustrate one of the many ways in which my neurodiversity makes itself known, even if only to me. This introduction is a lot funnier in that voice. I like the idea of Gadsby being here with me right now. It’s been a hard night. Let’s get Andrea Gibson in here, too. There. Do you feel that? They’re the keto bread to my plant-based, thinly sliced protein, but not in a Bambi way, just in a support-system sandwich way. Nom nom nom.

Most of my name is not what I was born with. My other names are my dead names. My legal name serves me better, represents me better. I may not be able to vote because I changed my name and not because I got married to the man I wanted to be. He’s a good life partner after more than three decades of trying. I’m a good life partner, too. I’m serious. I’m not even sure I want to be him anymore. These days, I’m busy being, and becoming, me.

I forgot to tell you about all my medical issues, including rare diseases that pedal wave inside me like various and sundry nudibranches. Just imagine them like that, not like what some of them actually are, which is life-threatening.

Oh, and I’m a flutist, essayist, poet, birder, and weaver who loves the world and all living beings, which is why I’m so damn vocal about everything. I’m bound to frustrate you, confuse you, or piss you off at some point if you don’t beat me to the punch. Some of those frictions will be superficial. Others may cause deeper wounds.

That’s it. Me in a nutshell. My story or my personal brand or whatever. This is the poet you’re supporting if you support me. I think I’m worth supporting, so give it a go.

Bloatano

I lost my phone for a while today and had the exact same feeling of being untethered that I experienced when my mother died. Unfortunately, this played out in front of my therapist, so he no longer has some image of me as a moderately reasonable or quasi pulled-together person.

I wrote a poem. It’s not about my phone, but I do have a poem about my phone because I love it. I mean her. I mean Aluminium. That’s her name. She and I have bonded over the fact that we both contain lithium. She has a little case with a cover on it that’s kind of like the leather pocketbooks my mother’s cigarette company used to give its customers for free. I love her. I also love my mother, who died on December 20, 2004. Oh, that’s what’s happening. That anniversary’s coming up in two days, hence all the big emotions directed at Aluminium.

This Calibri T-shirt is getting tighter as the night wears on. It feels like a corset and not in a good way. Bloatano has entered the building. I mean my body. I mean I’m bloated, but Bloatano sounds better, like the monster that GI distress is. The internet says I’m the first person ever to use the word Bloatano, so that’s kind of a big deal, which means I’m kind of a big deal. Bloatano also affects my ego from time to time, clearly.

I blocked three people today. It was super. My image of the medieval badge gave me the courage I needed in the precise moment I needed it. I can’t wait to hold all those little phalluses in my hand when the actual badge arrives. If phalluses really ward off evil, I’ll have ample protection.

Bad D(a)NA

I took a genetic test last year. It said my overall health score is in the 74th percentile. I was like, That sounds about right. Well, I looked at my score again today and saw that it can be broken out into DNA and lifestyle. My lifestyle score is in the 99th percentile. My genes? Only the 49th percentile. Half of the genes they look at promote health. The other half strongly promote illness, disease, and disorder. And I do have a number of health issues, rare diseases, syndromes, and one big, fat disorder. So it’s not off.

So far, the company has identified 149 potential risks based on my DNA. I recognize a bunch of them because they aren’t just risks. They’re acute and chronic issues I have, like heart arrhythmia, thyroid inflammation, dyslexia, and mania. It even picked up on my sugar cravings, tendency to worry, droopy eyelids, rosacea, TMJ, and obsessive-compulsive tendencies.

And that 149? It’s not even factoring in things like postural orthostatic tachycardia syndrome, common variable immunodeficiency, and follicular thyroid cancer, all of which I’ve had or currently have.

I can add labs to my report to bring my overall score up. (Aside from my TSH lately, my labs are awesome, mostly because they miss a lot of things.) But I can’t get over that DNA percentile. How am I a viable organism? How am I here? Am I dreaming this life? Are a groin hernia and leaky gut really in my future? Do I have a future?

In the words of my fellow Gen X elders: What gives?

Pill Fight

Because Thanksgiving somehow marks the start of the new year for me, I spent part of the day doing what people do as they move from the old year to the new one: creating a schedule for the thirty-three vitamins and supplements and five medications I take.

Half of what I take interacts with one or more of the other things I take, so putting this schedule together feels like getting a poetry manuscript in the right order. It’s also like doing calculus, which I vaguely remember. Math was always fun and games for me until the answer invariably came out wrong and I had to start all over.

I have diagrams with things that are crossed out, things I’ve moved multiple times, pictures I’ve drawn of pills fighting with each other, little swords in their little pill hands. My floor, covered in sticky notes, has been transformed into a pink-paper sea of faded, flattened blossoms, each a failed attempt to meet every substance’s needs without compromising any other substance’s needs or my needs, which is the whole point of this undertaking. I have to be careful about how and when and why I introduce new substances to the watery admixture that is me.

I have a bunch of tabs about chemical interactions open on my computer. I have a brand-new Trello board full of notes. I’m very close to writing a raggedy-edged poem ranting about pills and people in the style of Charles Bukowski.

The Trello board has a white-stucco background depicting stairs leading to a colonnade whose immersive columns rise all around me, or so it seems, like bleached bones. I chose the photo for all my boards related to my health. It makes me feel safe somehow, like I’m inside my own body, which is at once dead and also impenetrably strong. It’s almost like one of the liminal spaces in my dreams, but I never futz with pills in my dreams or boluses I empty under my tongue or sticky fluid made from other people’s plasma that I absorb under the skin through needles I jab into my upper arms. I’m too busy running in my dreams or flying or falling. Unless I’m in the grotto. I could stay in the grotto forever, and I will if we get to choose where we go next, once the pills stop working and the cathedral of the body collapses and someone burns me like a banned book, like a bra, or maybe like a flag.

Dissolving and Emerging

My severe hypothyroidism is taking a toll. For the past two weeks, gobs of hair have been falling out every day. I’ve been in bed since Friday. I need to have blood work done to see if the new dose of thyroid-replacement medication is improving things at all, but I didn’t have the energy to call the lab to schedule an appointment because the required opening up the cabinet where I put the lab paperwork, pulling it out of a stack of papers, finding the phone number, dialing the phone, and talking to someone. Too much. Also too much: doing my immunoglobulin infusions, the ones that keep me alive; preparing for the support group I’m facilitating that starts this week; hydrating; exercising; bathing; eating.

In this hypothyroid state, which has been creeping up on me since last fall, I’ve also been thinking a great deal about poetry and what I’m doing as a poet. A hypothyroid state isn’t the best one to be in when having these thoughts, but anyone who’s been hypothyroid knows these are the kinds of thoughts one has when hypothyroid.

Here’s my conclusion. Poetry is, at its worst, a discriminatory and harmful system. I’ve experienced discrimination and harm firsthand. But the system being what it is doesn’t make it one I can walk away from. I’m a poet. Being a poet isn’t something I chose or can unchoose. It’s a way of being.

When I was close to death in 2022, writing an imitation poem after Richard Siken is what brought me back to life and what allowed me to continue living. There was no question for me then that I was bound to poetry, to being a poet. It doesn’t matter that it was a Richard Siken poem. It could have been any poem, imitation or otherwise. I time-traveled in that poem. I found my way into and through time itself, not because I’m special or any given poet is special. What’s special is poems: who we are in them, who we aren’t, what we see, what’s beyond seeing. That dissolving when we need to dissolve. That emerging when we need to emerge. That liminal space between dissolving and emerging where we can live more expansively.

I came back to poetry. I can’t leave it again. I think my presence makes poetry better, not worse. I’ve written about what happened to me in poetry and beyond. I see issues at the systemic level and call attention to them. Because I’m older, I have a longer memory than a lot of poets do, which gives me insights others may not have. I make choices about where to send my work and who to associate with accordingly, which is necessary when poems enter the world of poetry, that less-than-optimal system that can and does do damage.

I’m neither a sycophant nor the poetry police. I call things like I see them. I’m not trying to make anyone feel bad about the unexamined biases that exist in poetry or the ways in which they may be contributing to those biases or at least not helping alleviate them. I do think we should all pay more attention to the institutions and organizations we support, the people we defend, and how we talk about those who are exploited and otherwise victimized within the system. But I know I can’t change anyone or the system as a whole. I can only control how I navigate it and who I am within it.

I suspect things would be different if poets didn’t have jobs to worry about or tenure or getting published or securing money for their projects or any of the other pressures that keep the system humming along without much change over the past several decades. I’m not fettered by any of that. I just read and write poetry.

I still remember Carolyn Kizer telling a group of poets that another famous poet tried to rape her. It was at a dinner before a reading she was giving. I also remember how the other poets at the table responded, which was to react in a flustered way and quickly change the subject. That was nearly thirty years ago, when I was just starting to write poetry. But what happened to her occurred decades earlier.

Poetry has had systemic issues that affect individual poets for a long time. These issues didn’t start yesterday, and they won’t end tomorrow. That’s why I’m not going to stop writing poetry or talking about what I’ve experienced and seen in the poetry community. Carolyn Kizer was talking to me that day in 1997. She was warning me. I heard her. I try to hear everyone who speaks.

Ribbety

A standard poodle seems to be driving the Yaris in front of me.

I thought American Sentences would lead to real poems, but no.

Saw a guy walking down State Street in Hurricane dressed like a chicken.

Wrong-way crash. I drag my lifeboat to the scene. There are no survivors.

My lifeboat believes
in water, what it can do,
not what it doesn’t.

I brought my lifeboat to the wrong ocean. The water spat it at me.

I’m stuck. The ship is sinking. I brought a lifeboat, but it’s the wrong one.

I turn the lights on in my house clockwise so time doesn’t go backwards.

My mind is a wild turkey scaling a basalt ridge without its flock.

To avoid writing poems, I’m rejuvenating my throw pillows.

I washed all my walls today because who can write poems with dirty walls?

Me: I only get seventeen syllables? Screw that. I’m outta here.

Jon turned on the heat, so now I have to sing Glenn Frey’s “The Heat Is On.”

Dreams:

Walked down a long peer and saw you’d turned into a drug lord. I said hi.

I decided to marry you because I liked your dogs. They were small.

I dreamed the best American Sentence but forgot it when I woke.

It went, like, something something something something something something something.

It’s strange how little I have to say when I have finite syllables.

Feces-covered toilet plunger left in hotel hallway. Good morning.

Tomorrow, we see the doctor but today we bird at Utah Lake.

I was with people in my dreams last night and cannot remember them.

Something good, a party maybe, or something bad. I can’t remember.

Whatever it was I left it, then went back to it. The dream, I mean.

I like my body right now, enough, the functionality of it.

When we get back home, I’ll write real poems, not just these bullshit sentences.

Back is filler in that last sentence, which is why it’s total bullshit.

American Sentences can make me say things weird or not at all.

I’ll get some good ones out of this. I just know it. Me of big, fat faith.

Not everything fits into poems. Not everything fits in the world.

I sort of like that last American Sentence, but I don’t trust it.

I guess that’s the deal. Do I trust myself in language and in the world?

Good morning, we scare each other, on the other side of fear is love.

Butter, my rubber chicken, got a plastic cat dressed as a chicken.

Butter is also plastic, not rubber, but I haven’t told her yet.

So many tall, beautiful people here you could put them all on cakes.

My sleep score last night was dude what do you even think you were doing.

I forgot to pack shoes: I came in slippers and must live in slippers.

Gotta hit the road for a medical vacay these days in Utah.

File under Make American Healthcare Inaccessible Again.

At least we’ve put some miles between us and the Utah measles outbreak.

And I got this rubber chicken who loves me more than politicians.

I found my boots: Now, I have my boots, slippers, and a rubber chicken.

I named the rubber chicken Butter and held her as I slept. She squeaks.

Butter is filling me with microplastics, I’m sure, but also love.

Olivia Newton-John’s “Magic” wakes me from sleep in the hotel.

How the song found me in Provo, I’ll never know: some kind of magic.

Make America Sacred Again spray-painted on a pink trailer.

In Provo, Utah, with nothing but slippers and a rubber chicken.

Telling someone you feel emotionally unsafe around them because of their language and behavior isn’t a dangerous thing to say in general or to a white man in this day and age. If someone tells you that’s the case, they aren’t listening to you. They aren’t hearing you. They are reacting in a way that’s most likely in keeping with the things that made you feel emotionally unsafe around them in the first place.

I’ve been spelling tripartite tripartate and pronouncing it tripartate for more than thirty years is how I am.

I can do whatever I want in a poem, more so than in the world.

I have outgrown my underwear is how I am.

I’m looking at Bill Knott’s poetry archive and thinking what’s the point we’re all going to die is how I am.

When we fail to recognize sanism and ableism in all its forms, we fail to protect ourselves and each other.

I can’t keep attempting to raise consciousness in my local community, online, and in poetry circles to the point of having medical episodes and mental-health destabilization so others can keep catching up and catching up and catching up … but never actually do. I’m tired. Literally sick and tired.

Give us ribbety or give us death. — Sign at No Kings Protest

Ren Wilding is an astounding poet. Reading their work makes me feel like someone’s cracked my chest open and inserted a better heart.

Him: If someone does something wrong in poetry, you need to name them publicly to warn others.

Also Him: I’m afraid you’re going to say something about me that hurts my writing career.

Me: I’m going to have a nice day.

My Intestines: Not so fast.

A group of frogs can be called an army, a chorus, or a colony. I call a group of frogs a democracy.

I used to want to be the cylindrical container that shot through the pneumatic tube at the bank. I also wanted to be the money inside the container. Anything to not be human.

I made a bunch of big decisions, I’m in the bed, and the life partner is bringing me no-bake cookies, ice cream, and caramel corn is how I am. My therapist said this is OK. I’m not so sure.

I stole the last Zevia in the house from the life partner is how I am.

I’d rather be too soft for this world than too hard.

I’m eating caramel corn while lying in bed with my dog on me is how I am.

We can be born after we’re born, and it doesn’t need to happen in a religious framework.

The Harvest Moon Supermoon and the Waning Gibbous Moon are stealing my dreams. I need those dreams. They’re for me, not for various and sundry moons.

Half of what you’ve done has already been done before and by half I mean all.

The life partner has informed me that he’s no longer angry with me. We just woke up. We haven’t even interacted today.

Your work matters, what you do in the world matters, and you matter. Thank you all for what you create, what you share, and for your kindness.  

The white-crowned sparrows have arrived for the winter, which means joy has taken up residence in this desert.

I just thought about baby animals, and I’m suddenly very happy.

When I see nothing but darkness, teach me to see the dark. When I hear nothing but darkness, teach me to hear the dark. When I feel nothing but darkness, teach me to feel the dark. When I realize I am darkness, teach me to love the dark that I am. The darkness of my body. The darkness of my mind. The darkness I came from and will return to. The darkness that is all that is.

I would really love to be in a room where I feel wanted, welcome, like I don’t have to hide essential parts of myself, where I don’t have to listen to things that are painful and othering, and where I can speak in full voice without shame and trepidation.

Poets who see folks with psychotic disorders as terrible people can fuck all the way off. Poets who stand up and teach that kind of shit can fuck off even more.

When you think you’re the destination, but you’re just the obstacle.

I love a good fight on cuneiform tablets.

The only thing worse than having wet hair is having wet hair in a new place.

Your cracks are how the universe enters you.

I just googled what is a sand time thing called is how I am.

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—

  1. 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.

  2. I can go out during flu season without worrying too much about how serious contracting the flu could be.

  3. I can see the exponential rise in monkeypox cases and not worry that I might be especially vulnerable to the disease.

  4. 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.

  5. 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.

  6. I can touch door handles and other surfaces in public without much concern.

  7. If I get a slight cough, I don’t have to worry about it turning into bronchitis or pneumonia.

  8. My health status never goes from relatively normal to life-threatening in a matter of hours.

  9. When I take antibiotics, they work quickly, and I only need one round.

  10. I haven’t been on antibiotics dozens or even hundreds of times over the course of my life.

  11. I’ve never been on prophylactic antibiotic therapy. I don’t even know what that is.

  12. 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.

  13. 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.

  14. I’ve never heard the phrase “immune dysregulation” and don’t have to concern myself with what that might mean.

  15. 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.

  16. 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.

  17. When I’m out in public, I don’t have to worry when people cough into their hands or without covering their mouths.

  18. 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.

  19. I know I won’t have to pass on social activities because they would put my health at risk.

  20. I know family gatherings won’t pose a threat to my health, even if young, potentially unvaccinated, children are present.

  21. 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.

  22. 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.

  23. 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.

  24. If I pick up a magazine or watch television, I’ll see images that represent me and my experience of my health.

  25. 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.

  26. My actual and potential contributions to society will not be challenged because of my immune system.

  27. I can go for months without thinking about or being spoken to about my immunotypicality.
  28. I’m not identified by my immunotypicality.

  29. 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.

  30. 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.

  31. 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.

  32. 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.

  33. 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.

  34. 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.

  35. 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.

  36. 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.

  37. People aren’t embarrassed to be seen with me because of my health status.

  38. 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.

  39. My partner doesn’t suffer from undue stress and hardship because they’re my primary or only caretaker.

  40. 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.

  41. 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.

  42. 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.

  43. I’ve never had the experience of being misdiagnosed over and over again throughout my life.

  44. 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.

  45. I don’t have to deal with the financial burden of expensive, ongoing medical care and therapy.

  46. 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.

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.