Writing

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.

Toy

I dreamed I invented the perfect body-positive, sex-positive sex toy that was also an actual toy for those who, like me, live in the let’s talk about books and spreadsheets and history fringes of pleasure than in the more traditional let’s put this and that together set.

We’re Here. We’re Poets. Get Used to It.

I dreamed I was in the U.S. Senate chambers, where a politician was spewing the hate of the moment as faithfully as a geyser, when a feeling started moving through my body. It began in my gut and had me on my feet before it reached my brain. I didn’t even know what I was going to say, but it ended up being this:

What’s the point of poetry?

Why does it matter when it can lead you down some unknown path, and you don’t even know how it will end?

When it gets you so lost you feel like you’ll never be found?

When everything ahead of you is a blank page, and there’s nobody there to help you fill it?

What’s the point of starting out on that journey all alone, maybe never to finish, never to come back the way so many who wander lose in the end to their wandering, boots into snow, knees into dirt, head into clouds?

The point is to go forth anyway.

To try.

To make that creative journey, which is an existential journey, because it can bring us back to ourselves and each other in the end rather than relegating us to seats where hate lives and breathes, where the air is sucked out of the room every time we open our mouths, because poetry is an act of living and an act of love, and politicians, hell all of us, need to lean into love.

Leaning the other way, into darkness, is not an option because it’s an extinguishing.

The human spirit will not be extinguished.

Living beings will not be extinguished.

The Earth will not be extinguished.

We’re here.

Poems are here to remind us why.

The whole thing was somehow caught on a live camera and played to a gaggle of teens who were visiting the capital. As I left the chambers, they all threw their arms up the way I’d thrown mine up as I spoke. In unison, they yelled POETRY! Poetry gave them hope that day, as it gives me hope every day.

I’ve written before about how dreams may be more our reality than waking states. I hope that’s the case and that dream logic seeps into all our waking states today, tomorrow, and as long as we’re all sharing space here in time. Happy fall equinox.

Fun-House

The life partner and I are having an ongoing fight interspersed with listening to music in separate rooms. What happened, you ask? He tried to handle a medical bill three months after I first began asking him to do so. He insisted it wasn’t urgent and was feisty in a bad way every time I brought it up.

As a result, a couple of weeks ago, I almost got put into collections by the hospital and had to pay the bill in full before I could be seen by my immunologist.

But that’s not what the fight’s about because my window of tolerance for the life partner is larger than he could ever imagine.

The fight is about the fact that he caught a wild anxiety this morning, which happens from time to time, and called the insurance company to figure out why the claim had been rejected. He got in way over his head and couldn’t even identify the correct claim, which made the conversation with the representative go south fast.

He burst, I tell you burst, into my room in a panic with his phone in his hand and a tiny confused voice on the other end of the call, demanding that I help him immediately, which I did by taking over the entire situation and cutting him out of the conversation.

He’s trying to defend the indefensible. That’s what the fight is about. I hate it when our home becomes a series of fun-house mirrors reflecting anxiety and defensiveness, especially on a day when something good is actually happening in my life.

(I’m not sure the two phenomena are mutually exclusive. Any success I have seems to spike his anxiety and, somehow, his need to prove his worth through acting defensively toward me. Other things spike his anxiety, too, like The Rumproast in Chief, which means he’s been anxious about certain issues for a while now.)

What am I listening to? The Crystal Method, of course. I owe this band a debt of gratitude for getting my rear in gear where writing is concerned.

More Abuses in Poetry

I’m reflecting on how I could have stopped writing poetry at any of a number of points over the past year:

Last spring, when a poet I’d known for more than two decades went on his page and threatened me because he thought it was inappropriate for me to tell him that, as a friend, I loved him. He decided that meant we were having an affair. He attacked me privately, then went on his page to tell the entire poetry community he was going to out me as a married woman who was acting disgracefully. I had to watch women poets, including those I know, console him rather than telling him his behavior was inappropriate. That is the one and only time I’ve screenshot a Messenger conversation and shared it. I did so to put an end to the unfounded, untrue, and libelous comments he was making. He immediately blocked me. I never even said his name—though I would if something like that happened again today—and I removed the screenshots the next day rather than leaving them up as I could have. (Update January 26, 2026: They’re back up on my Facebook page.)

Last winter, when a poet who’d been following my work for months and said he wanted to publish some of my poems left an obscenely hostile, sanist comment on one of my microessays lamenting the fact that people are using a bridge down the street to die by suicide. He screamed that I needed to be in therapy rather than writing and that my writing was the last thing he needed in his life, as if he hadn’t followed me and chosen to read, and laud, my work up to that point. As if he didn’t have the power to stop reading what I wrote or unfriend me or mute me or any of a suite of well-adjusted options that were available to him.

Two days ago, when a poet I’ve known for more than a year, perhaps the most successful and talented poet I know, lashed out at me for using the term sanism, indicating that I was “borrowing” the term, implying my experiences with abuse and trauma and my lived experience with bipolar aren’t valid because, unlike him, I haven’t been to war. It was not the first time he’d lashed out at me or the first time he’d engaged in disconcerting comments about and behavior toward women, namely women poets with mental-health diagnostic labels and lived experience.

That’s about one-third of what’s happened over the past year. Poets can be so toxic and vitriolic and othering and fragile and entitled and bullying—and even engage in nasty tactics like gaslighting—that it’s still hard for me to wrap my head around it. I am shocked every time it happens, though I shouldn’t be. Something similar but much worse is why I left poetry for years back in 2015.

Shame on those who engage in behaviors like this. Shame on the effect you’re having on other poets. Shame on the dynamics that underlie what you’re doing. Shame on you for doing everything seemingly in your power to remove folks like me from poetry in particular and the world in general. I mean the human world. I also mean the living world. Like everyone with a dignoastic label and lived experience with bipolar, I have a 1 in 5 chance of unaliving myself. Not trying to. Actually doing it. Anyone who nudges, pushes, or shoves another human being in that direction needs to sit with what they’re doing and why they’re doing it. Bigtime.

I had just finished my essay for Mad in America the day before the poet accused me of appropriating the term sanism. What if I’d pulled that essay? What if I’d decided not to submit my manuscript to any more contests? What if I’d decided not to write poems or essays anymore? What if my mental-health recovery had been compromised?

Folks who need my writing would have lost my voice, including my insights, perspective, and stories. And I would have lost part of myself. That could have been what happened because poets like the ones listed above make poetry too much. Too hard. Too unwelcoming. Too dehumanizing. Too rancid. Because of the sexual assault that occurred with my mentor, which took me away from poetry and—in a sense—my life for seven long and lonely years, I am always close to leaving when some new poet rears his head in a similar way, with similar impulses and similar levels of dysfunction.

But I told myself when I came back that I will not leave. I will not budge. I will not back down. I will be a 4 in 5 even if certain men in poetry have absolutely no regard for my health, well-being, or life. That’s the biggest fuck you I can give men like that.

And I will write. I will not stop writing.

—

And those of you who know these types of folks and do nothing? Shame on you as well.

And those of you who think folks like me should shut up about things like this, who confuse us for the problem because we speak about the problem, who tell us to just get over it or at least not talk about it publicly? Shame on you, too.

I do not have the capacity for any of you. The work I’m doing is far more important than publishing poetry, that is if I have to stay silent about abuses in order to have work accepted or dissociatively participate in the system without being able to advocate for change within the system. I will not stay in the good graces of a toxic culture. This is about human rights. All of it. My life, my work, my purpose.

Dream Body

I dreamed my dream turned into a body and crawled out of my body so it could suffocate me. I dreamed this dream over and over. In some iterations, the dream whispered terrifying things in my ear before it stilled my breath. The dream’s body was made of the universe. It was weightless but all force.

Get in Line, Brian Kilmeade

Days of Bruising in the Sunflower State. Kansas City, Kansas, June 19, 2015.

You want me dead, Brian Kilmeade? Trust me, there’s a psych tech in Kansas who couldn’t agree with you more. This photo was taken three days after leaving KU Medical Center in 2015 with bruises all over my body after being beaten by a psychiatric nurse who also put me in a face-down hold, despite that position being illegal in most states and despite my having asthma. He threatened to hurt me even more if I ever “tried anything.”

What I had “tried” was getting my inhaler because I couldn’t breathe. The staff refused to give it to me, saying it was expired by one day, and they didn’t have orders for another one. I’d just been diagnosed with common variable immunodeficiency by the lead immunologist at KU Medical Center, but the staff in the psychiatric unit said I was making my diagnosis up. I also had thyrotoxicosis at the time, but nobody at KU Medical Center did the simple test necessary to reveal that was the case, even though it’s in their algorithm to test the TSH level of anyone who presents with symptoms similar to mania. The psychiatric unit’s former director implemented that policy.

Photos of these bruises are also on file at Shawnee Mission Medical Center, where social workers from KU Medical Center and a local organization for women took me to document what had happened to me. Of course I never did anything about what happened. Lawyers weren’t interested in my case. The state human rights organization wanted me to tell my story over and over again, which was retraumatizing. And my records from KU Medical Center were not accurate. This incident, for example, didn’t make it into the record. Nor did the EKG they had to do while I was blacked out, which I’m only aware of because I woke with a node still stuck to me. Nor did my being undressed, washed enough to be wet all over, and dressed again, but without my underwear.

The staff withholding my medication didn’t make the record. Nor did the staff throwing food on the floor for me to eat. Nor did two male techs standing in the doorway laughing at me. Nor did a female nurse dogging me in the hall outside my room while saying “I didn’t do anything to you,” as if this absolved her from everything that was done. Nor did the staff hanging up the phone on me while I was trying to call my immunoglobulin company, which I’d been instructed to do to set up my infusion deliveries after I left the unit,* or important organizations like the one that was trying to advocate for me, or my friends, or my family members. Nor did their crushing me in the doorway to the room where the phone was located while trying to remove me from that room. Nor did their playing violent movies in which women were being beaten. There are more nors, I’m sure. But you get the idea.

—

* Having these infusion deliveries set up was a condition of leaving the unit. The staff repeatedly refused to let me use the phone or hung up mid-call in an attempt to keep me from being discharged.

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.

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.