Essays

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.

The Fog

Writing used to be my way of working through things in order to discover beauty, complexity, and meaning, as well as what escapes meaning, to feel those textures and colors the body and mind together send to the surface like koi in a pond waiting to be fed. All those little mouths mouthing at once. All those fat bodies and watery fins. So much movement but not without pattern, like music.

Writing used to be my music, its notes distributed like lilypads the bodymind somehow reads through touch, for that’s what language is. Something we touch, not something we see. Something we touch and hear.

I worked hard to learn how to write despite my dyslexia. To write, to read, to understand. I wanted into that world because of what poems could do.

              The fog comes
              on little cat feet.

If fog could be a cat, I could be anything in language, not what I was in my home. I didn’t have to be that child or a child at all. I could be something that made sense or was so far beyond sense that sense wouldn’t matter anymore. I wanted to do that with language, to unlock its magic. It took decades, but I did. I think I did.

I’ve come to identify with being a poet and writer, with sitting down at my desk and writing every day. I told people poetry was everywhere, always, like a faucet you can just open up and there it is.

I don’t feel like that anymore. I open the tap and there’s nothing. People are cruel. I’ve encountered more cruelty in the past three years, which is when I started writing again, than in the other twenty years of writing combined, with the exception of some awful things that went down in the poetry community in 2015. I’ve been personally threatened, accused of appropriating the term CPTSD (as if my trauma isn’t real), attacked both for not really being neuroatypical (based on how I appear) and for using the neurotype framework, told nobody should listen to me because I have bipolar, that I’m morally unclean, that my writing is doing harm, and more.

That’s on top of the more general comments people have made in response to my writing: things like everyone who has a mental-health label should be round up and forcibly removed from Utah or queer people are evil and satanic.

               It sits looking
              over harbor and city

These comments are like gargoyles draining the life from my writing and from me as a person. They go well beyond discourse. They’re attacks. They’re erasures. They’re discriminatory. They’re scary.

They’re what passes for engagement these days. We’re all seeing comments like this day in and day out, especially on social media. Some of us are participating in it in our own ways. Most if not all of us are negatively affected by it. Even outlets that are designed to give us a voice can end up sending us to slaughter with every piece of ours they publish. For civil discourse? For freedom of speech? Or for clicks, shares, page views, and increased reach? If an outlet wants to keep you angry at those who also trying to speak to the larger issues in our culture, our country, and our communities rather than catalyzing you to also speak and act in response to those larger issues in your own way, ask yourself what that outlet’s motives are and what effect the infighting it generates has on anyone’s ability to advocate for anything—or even to survive what’s become increasingly difficult to survive.

How is a writer who, for years, wrote for some of the largest medical organizations and research universities in the country, as well as an esteemed consortium comprised of the top medical and research centers, in this position? Who’s routinely had work in competitive literary journals and with well-regarded indy presses? Some of this is coming from social media and website comment threads and is in response to my essays and opinion pieces. Some of it’s happening with friends on Facebook, namely people who read my work and then project things onto me so that, when I am not what they think I am or what they want me to be to them, they can and sometimes do become irate, belittling me and my poetry.

This is how things are now. And they’re going to get worse. But I don’t have to keep saying OK to it. I’ve already started saying none of this is OK. Now, I’m grieving on many levels—what poetry and writing can and can’t be, what kinds of audiences it can and can’t have, what the writing community and our communities in general are and aren’t—and I’m waiting for the faucet to flow again. That may be the only faith I have left in me. I believe I can find my way back to poetry, and poetry can find its way back to me. I have to believe this to survive.

              on silent haunches
              and then moves on.

May the fog that obscures poetry move on. May the fog that keeps us from seeing each other move on. May the fog that blankets our entire country move on. Let it move on. Let it move on.

—

I appreciate my friends on Facebook who feel their way through the world using language and take the time to communicate thoughtfully. You are the antithesis to much of what passes for communication these days.

The poem used in this essay is “The Fog,” by Carl Sandburg. It is in the public domain.

The Order

I want to talk about the concentration camp being built in Utah, where I live, that will warehouse people who are unhoused and force treatment on them for real or perceived mental-health issues and substance-use issues. I want to compare it to the Topaz concentration camp that was built here in 1942 and operated until 1945 under Executive Order 9066, whose name I know because I have to know it. To survive. To advocate. To resist. To not repeat the past even as we repeat the past because others don’t know the name Executive Order 9066 or what it did, what it made our country and its people: ugly, cruel, inhumane. Those who don’t (or don’t want to) know about EO 9066 also may not know that another EO made this new concentration camp in Utah possible, the one written July 24, 2025, whose official title I won’t mention because it doesn’t describe what the order does, what it enables. It would be better if it just had a number, not a misleading title. It would be better if it didn’t exist at all.

But I can’t talk about the concentration camp because my language isn’t welcome, especially among those who also have lived experience with mental-health issues. Those I most want to communicate with will attack me for using the diversity model to give context to what I’m conveying. Those of us with lived experience with mental health have different experiences and use varied frameworks for communicating our experiences. We are and should be polyvocal. Yet there’s a growing push for monovocality—for one way of speaking, for one way of perceiving and communicating human experiences. So I’m not talking, not the way I want to be or to the audience I want to talk to. At least I have this loose take on the haibun.

              The age of pastures
              is over. Detention is
              involuntary.

                            Your right to exist
                            on your own terms ends now.
                            You belong on outskirts.

              Get used to the word
              stern. Your life is a concrete
              slab if you’re lucky.

                            Say no and go to jail.
                            What is this if not jail
                            by another name?

              Like a rose. You think
              you’re like a rose when really
              you’re a line item

                            in a multi-million
                            dollar budget. You’re our
                            ticket, our future.

              Containing you is
              business. Here’s a pill.
              We’re sorry it’s come to this.

                            Swallow. Concentrate
                            means gather. We gather you
                            today for Holy

              Capital, for the bottom
              line. You’ve lost your right
              to leave, so don’t try.

Frictions

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

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

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

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

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

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

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

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

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

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

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

—

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

Loosening Our Ties

My father had a tiger’s eye bolo that I loved. I wore it in grade school when we reenacted the Oklahoma Land Run. (Yeah, we did that. Also, there was more than one land run, but we only learned about and celebrated—for lack of a better word—the main one for simplicity’s sake.) I wanted to be a cowboy. My teachers protested. They wanted me to do whatever the girls were doing.

I’ve been looking for a bolo that’s like my father’s for a long time, but most of them are turquoise, and my father’s was shades of brown. I found one today tucked into the back corner of a gift shop. It was made of tiger’s eye. As soon as I saw it, I remembered that’s what my father’s was made of, and it’s also why tiger’s eye was my favorite gemstone as a child.

As I held the tie, I thought, “My father was more than the sum of everything terrible that happened to him and everything terrible he did, including what he did to my mother and me.” It was a surprising thought. I want to believe that—that there was an untarnished part of him tied to the traintracks inside his heart. He may have tied that part up. He may have wanted it tied up. But it still existed, whether or not he longed to free it.

I bought the tie to commemorate continuing to be in mental-health recovery after my trauma-induced mania two years ago. As I drove home, 104.1 played “Dust in the Wind” by Kansas. The sky was lapis lazuli polished and held to the light. The cliffs in and around Zion looked at once eternal and ephemeral. As much as their presence hints at forever, they are also literally dust in the wind.

I started crying. How could I not? How could anyone spend time with this land, this sky, and not untie the parts of themselves that are immobilized in their hearts?

Let the heart run. Let it rewild. Let it forget suffering. Let there be nothing to suffer from or for. Let us all loosen our ties and help others loosen theirs.

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.

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.

July 24 Executive Order Erasure 1

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.