Common Variable Immunodeficiency

Water Cracking Air

Happy Trans Day of (Indi)Visibility.

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

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

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

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

—

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I ate bread in the shower is how I am.

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

I had to buy bigger underwear is how I am.

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

I am dyslexia strong.

Book title, free for the taking: Plastination.

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

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

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

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

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

Alex LaMorie

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

My history is a burning history in a burning world.

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

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

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

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

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

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

What are these words, even?

Me looking at my own writing.

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

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

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

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

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

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

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

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

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

Hi, I’m Dana

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Truss Me

Cancer cells can hide inside other types of cells within the body, which is how cancer can evade detection and continue taking up residence inside us even after cancer treatment.

Viruses can mask themselves inside us and avoid being found for years. Hepatitis C does so using FAD, a molecule composed of Vitamin B2 and the energy carrying molecule ATP.

It only takes one B cell turning on our bodies to get all the B cells around them whipped up and make them act the same way, at least for a time. That’s how autoimmune diseases like alopecia areata happen, where an itch or some other benign thing affecting the skin turns into a bald patch that lasts for months or forever because first one, then many, B cells misinterpret the itch as a threat.

My immune system is dysregulated. In addition to having immune deficiency, I have several forms of autoimmunity. My humoral immune system doesn’t always attack invaders such as viruses and bacteria, but it does attack me, my body, routinely. Dysautonomia looks like it’s an autoimmune disease. That tracks with my immune system dysregulation and the way I’ve been developing more and more autoimmune diseases over the course of my adult life.

Many of the health issues I’ve been having over the past two years seem to be my body saying no, the way Gabor Maté discusses such phenomena in his book titled When the Body Says No. My body has been saying no since I was a child, since my trauma started, my familial sex abuse and trafficking. My body keeps saying no and is now in a rhythm of saying no, sometimes quietly and—in a pattern that starts every seven years and resolves in about a year’s time—sometimes piercingly.

I’m at the end of one of those cycles now, but my body isn’t coming back. I’m a rubber band whose elastic has failed, the kind that ultimately break after years of use. I still can’t gain the weight I lost. I’m in pain every day, sometimes extreme pain. My heart gallops and loses its pacing. It would be put down at the track. I’m struck by bouts of exhaustion that come when they please and leave when they please. My TSH absorption continues to be significantly dysregulated despite not even having a thyroid anymore.

I’m fighting, but I’m not coming back. I don’t know if I’ll return this time. The trauma I’ve experienced is severe. My health issues are alarming and serious. Complicated, my doctors say. Your health is complicated. They are somber when they speak to me. They don’t have as much hope as I do, or at least as much as I once had.

The first person Maté writes about in his book dies. She can’t come back from her health issues and ultimately succumbs to them. Cancer, I think. I’d have to look again, and I can’t bear looking. That book is hard for me to read. This life is hard for me to live.

But I want to live. I will live fully as long as I can, whatever that looks like for me and whatever that continues to look like over time.

Haters, especially local haters who think the problem in this community is me because of my gender and sexuality and because of the ways in which I talk about my trauma, especially in and through my poetry: You don’t need to keep me down or hold me back or marginalize me. Stop doing that to me and to others like me. You’re poison. We need the antidote, not more of you. You will be ashamed of yourself someday. You will wish you’d led with love, been flooded with love, exuded love. Trust me. (Dont’ truss me.)

Forty-Four Signs of Immunotypical Privilege

Every day, as an immunotypical person —

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

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

  3. I can read about the recent resurgence in measles without feeling alarmed. After all, the measles vaccine is not contraindicated for me, and I know my body has mounted an immune response to the disease.

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

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

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

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

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

  9. 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.

  10. 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.

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

  12. 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.

  13. 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.

  14. When I am out in public, I don’t have to worry when people cough into their hands or without covering their mouths at all.

  15. I can be sure that, when I go to classes, movies or restaurants, I will find a place to sit in which I am free from issues that exacerbate my breathing problems, such as perfumes, fragrances and cigarette smoke.

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

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

  18. 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 his or her health needs.

  19. 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 did not function properly.

  20. 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.

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

  22. 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.

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

  24. I can go for months without thinking about or being spoken to about my immunotypicality.

  25. I am not identified by my immunotypicality.

  26. I won’t lose friends who can’t relate to what I am going through, who think I am exaggerating about my symptoms, or who just can’t deal with having a friend with my health status.

  27. 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 mandate that they do so.

  28. I do not have to be afraid that, when I talk with others about my health, they will suggest unsolicited supplements, dietary approaches or exercise programs.

  29. I will not 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.

  30. 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.

  31. 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.

  32. 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.

  33. 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.

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

  35. When I talk about my health, I can be certain that friends, family, co-workers and others will not become uncomfortable and change the subject.

  36. My partner doesn’t suffer from undue stress and hardship because he or she is my primary or only caretaker.

  37. Nobody tells me I should feel lucky to have primary immunodeficiency because it means I don’t have to work or accomplish anything during the day.

  38. My doctors have seen a lot of patients who are immunotypical. This means I am not put in the position of having to educate them about my immunotypicality, since they are already familiar with it.

  39. When I present in a health crisis at the emergency room, I am given prompt medical treatment, not told I am merely having a panic attack.

  40. Since I don’t have primary immunodeficiency, I am never called belligerent when an emergency room resident refuses to believe I have the condition and I am forced to insist that I do.

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

  42. 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.

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

  44. 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.

—

I live with common variable immunodeficiency and wrote this piece for Primary Immunodeficiency Awareness Month. It takes as its jumping off point Peggy McIntosh’s 1993 essay “White Privilege: Unpacking the Invisible Knapsack.”