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—

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.

July 24 Executive Order Erasure 2

Given that Fox News host Brian Kilmeade just called for people who are unhoused or have mental-health diagnostic labels to be killed by way of involuntary lethal injection, I’m sharing two erasure poems that use the July 24 executive order as their source text. Nobody, including poets, seems to be aware of the existence of this horrific executive order. This is the second erasure.

July 24 Executive Order Erasure 1

My Poems in Fence

This is the issue of Fence that my work appeared in back in 2001 just after I completed my undergraduate coursework. When I showed it to my first poetry teacher, he wouldn’t even look at my poem. He just said the journal wasn’t one he read or took seriously. I felt stupid for thinking my work had merit and that Fence was a credible publication. I didn’t submit work for seven years after that interaction with my teacher. I mostly didn’t write during that period, either. Matt Jasper calls this kind of thing wing clipping. This felt more like ripping my feathers out by their calami.

The issue I was in includes work by Bruce Andrews, Jorie Graham, Cate Marvin, and Adrienne Rich, among others. It’s astounding that anyone could look at the table of contents and respond the way my teacher did. Fence is one of the best literary journals out there. My teacher should have been celebrating me, not diminishing me.

Fence is currently open for submissions. Their reading period closes October 31, 2025.

—

Images: 1. The front cover of Fence, Spring/Summer 2001. 2. The first page of my poem Quintet being held down by an iron bee paperweight. 3. The cseconf page of my poem.

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.

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