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.

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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.

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.

Blood Work

I’m basking in the afterglow of running the gauntlet of angry Utahns waiting to have their blood work done at the draw station when none of the phlebotomists managed to report to work, so another staff member who knows phlebotomy had to step in, even though that’s not her job.

The people in that waiting room were hungry because these are fasting tests. They were sick and old and impatient. They had things to do or nothing to do that they’d rather do elsewhere than at the draw station.

One had a repairman coming. Another needed to get back to his morning gardening. A third was assessing the situation from a systems-theory perspective. Things weren’t run like this when he worked in IT for military hospitals, he told me.

A fourth tried to jump the line and complained bitterly when he was told he couldn’t do that. A fifth ran through the halls with blood dripping from her arm where the needle had been inserted for the draw.

And then there was my favorite, an octogenarian who turned to her husband and shouted, “Well, this is going to take forFUCKINGever” loud enough for everyone waiting to hear.

Also, even with all the peeing I do day in and day out, there’s one time I can’t pee. It’s when someone tells me I need to provide a urine sample and hands me a clear plastic cup.

Dana for Mayor

My day hasn’t gone as planned. I went to get lab work done early this morning only to find out the orders were never placed, which means I won’t have results in time for my appointment with the specialist who (should have) ordered them. This is the doctor who, in part, is following my cancer status, so the labs are important.

I came home to an attempted identity-theft scam that Jon and I both had to deal with immediately. Things like this are happening more frequently, and they’re harder to identify. Someone tried to hack one of my online shopping accounts just three days ago.

I commented on a story in The Salt Lake Tribune in support of a gay mayor in one of Utah’s cities. Someone else in the queer community, another Utahn, saw my comment and thought I was saying the opposite of what I was saying. Their response was to tell me that I’m attacking the mayor based on his sexuality, that I’m not being Christlike, and that I’m so ugly-looking that they’d never live in a city where I was the mayor. Humph. I have many grumpies around that set of assertions.

My Fitbit died. I have no data whatsoever, and I rely on that data for my health and mental health.

I drove half an hour each way to see my therapist, where I hoped to talk about the parts involved in my strong feelings about the SLT commenter calling me an unattractive, unkind homophobe, but the therapist forgot my appointment, which means I drove for an hour for no reason and have three exiles I need to deal with on my own now rather than in therapy. (Exiles are a type of part in the Internal Family Systems framework. It’s not ideal to be exploring them alone.)

These are all small problems in the larger scheme of things, and they’re counterbalanced by an incredible conversation and connection I had with a fellow poet today. We talked about organization, one of my favorite topics, and poetry and community and dogs and mountains. I mean, it was good stuff.

Also on the plus side, there’s my sweet dog. And my relative ability to handle all these relatively small problems. And my view of the laccolith, which I can see now that the clouds have started to dissipate or move on or whatever clouds do.

Oh, and someone ran over a raccoon in our neighborhood, so there’s also that sad occurrence. That’s another item for the negative side of today’s +/- list. I wouldn’t have known if I hadn’t been making that fruitless round-trip drive to see the therapist.

You can file this under grumpy with a lower-case g or grumpy with a capital g or dumpy if you also think I’m so unattractive you would never live in a city where I’m the mayor. The last part of that sentence was written by one of the exiles. She was called ugly by her classmates almost every day of her life from preschool until she was well into puberty. We’re working through it.

The Napture

Today is not my day to experience the napture, that is being transported from Earth to heaven in the midst of a fabulous nap. Apparently, I will not have any nap at all today, despite being mostly awake all night with my sweet dog, who’s not feeling well.

Maybe it doesn’t matter. Fitbit thinks I’m asleep all the time for some reason, including while I was sopping my sweet dog’s vomit out of the wool rug in the bedroom while the ceiling fan—which I’d turned on accidentally in the chaos of the moment—mocked my nearly bare back with wave after wave of cold air. Maybe I really was asleep. Maybe I’m asleep now. Maybe we evolved from sleep into wakefulness, but we’re never fully awake, even when we think we are. Maybe Fitbit knows this about me, about you, about all of its wearers.

Lately, Fitbit’s also been like, Hey, your heart rate’s totally low these days, super job, which doesn’t make sense because I’m not properly executing any of my self-care stuff. I’m barely keeping up with the 57 biomarkers I routinely track, not to mention the dozen or so behaviors I monitor. I haven’t tallied the exact number of behaviors I track, which shows you how much I’ve been slacking. Data only works if you work that data, right? Can I get a high five?

I mean, I’m trying to be a data-driven lifeform, but I’m failing better day after day. I’m having carbs again this afternoon, for one thing: the no-bake cookies that are my undoing when I allow myself to be undone, that is eating an uncorseted diet that’s bound to tank my efforts at improved mental health. If I had my continuous glucose monitor on, I could see in real time what those cookies do to my glucose levels, and from that data I could infer what’s happening to my mitochondria. I could look at old data, but it’s not the same. I need to see in real time what I’m doing to myself so I’ll stop doing it.

This is serious work, and I’m messing it up, and I can’t even take a nap, which seems like it would help. Why can’t I nap? 1: Birds. They’re too loud. 2. Lexi. She’s too restless. 3. Heat. It’s 76 degrees in here, and I’m too hot, the kind of hot one feels when one is menopausal, though I’m long past those days. I’m carb-hot. I ate carbs yesterday, and it’s made me hot. Not in a good way. 4. Husband. Things with, including accusations that I said something mean in all caps when I believe I said it all lowercase. 5. Husband again. Making silly vulgar gestures at me while someone I was talking to on the phone was telling me something awful and important. 6. The awful and important thing I was told and how I can’t do anything about it and how the whole world seems like a gaping maw sometimes, not at all heavenly, not at all a place where naps can be imagined or hoped for, let alone naptures.

HK

Three needles in my left arm deliver the immunoglobulins that I don’t make on my own. They used to come in little glass vials, which I loved because they were old-timey. Now, they come in big plastic syringes packed in more plastic with stoppers and plungers that are all plastic. Plastic is too much with us, and we’re moving toward it rather than away from it. Ah! But fungi can eat ocean plastic! Problem solved. Make more plastic. Empty barges full of it right into the water. Set off in your boat full of sachet packaging and throw it all overboard. No worries. The fungi got you. They got you.

It’s overcast today, windy. My neighbor’s roof vent is clanking every few seconds, its head spinning indecorously. Someone is backing up as evidenced by their truck making two discordant beeping sounds in the round. mleh MLEH mleh MLEH mleh MLEH. I want to walk through the world sounding like that, letting people know how I really feel. MLEH fucking MLEH MLEH mleh MLEH. I think I might already be doing that. I wonder what wild animals think of those sounds and if they’re as irritated by them as humans are or at least as this human is.

I’m looking at something round on my desk, now something octagonal, now something rectangular. I like the shapes of things and how they morph into shapes that aren’t tidy and that don’t have a name and that require calculus for analysis. I used to be able to do that. I could find the area of an irregular shape. I could rotate and translate shapes. I loved it because I loved my calculus teacher, who’s dead now: Lenny Gibson. He invented the abbreviation HK for who cares. I say that to this day. I give no shits about people understanding the reference. Mr. Gibson was a lot like the comedian Steven Wright. Who’s Steven Wright, you ask? HK, you’re probably thinking.

What’s the equation for loss, for memory, for a circle turned into a gaping mouth turned into a nightmare or a crime scene or a missing person report or an AWOL marriage? What’s the equation for who gets an immune system and who doesn’t? For who receives whatever’s being backed into their driveway? For who has a driveway? For who gets to keep existing.

Where’s the equation for dead water and dead forests and dead humans. I mean living humans who are effectively dead, who want death, who would come up with an abbreviation for killing everything in sight and say it proudly. Something that goes beyond WWG1WGA or 14 Words. Something unthinkable, unimaginable, until it’s seen and heard and cannot thereafter be unthought or unimagined.

Hard News, Bad Choices

Several alarming news stories have run in The Salt Lake Tribune over the past several days. They all have ties to Utah and involve children. Each story is horrific on its own, but together, they’re overwhelming. I cried most of yesterday morning. It was too difficult to process this news, especially given what’s happened and appears to still be happening in [REDACTED], so I engaged in several forms of avoidance, including employing maladaptive coping skills that threw my metabolism off and undercut the work I’ve done following a ketogenic diet for mental health, doing intermittent fasting, exercising, getting the right nutrients, and maintaining healthy biomarkers.

I’m writing about this because I can see how something that’s upsetting can cause someone (in this case me) to do one thing that throws something off, which in turn throws something else off, which in turn throws something else off. Then maybe more bad decision-making gets thrown into the mix as things start to slip, and pretty soon a little movement in the ground turns into a mudslide that swallows an entire house, trees, retaining walls, and more.

Yes, the upsetting thing is upsetting, but the behaviors that follow and aggregate are what drive the mind and body into a state of disequilibrium that prevents a person (still me) from finding ways to sit with and work through what’s upsetting to whatever extend they (again, me) are able to.

Here’s what went down yesterday. Upset about the news stories, I developed a sudden craving for brownies. It was an all-encompassing desire. I went to Lin’s, where they sell Num Bars, which are ketogenic. They didn’t have them. (Turns out, the Utah-based company went out of business.) In my desperation, I got no-bake chocolate cookies instead. (This is when the whole ageism incident happened with the cashier, which added to my distress.)

I came home and ate the whole container of cookies, thereby consuming four times my typical amount of carbs, and none of those carbs were good ones. My body can’t tolerate carbs anywhere north of 50 net grams per day. (I have data from my cardiologist and endocrinologist that supports this assertion. It’s not just a thing I’m saying to be dramatic.)

The rest of the day, I made terrible choices or simply didn’t do what I should have done for my health. I failed to take my supplements. I didn’t drink water. I didn’t do my intermittent fast. I didn’t eat enough protein or, really, anything healthy for the rest of the day. I didn’t lift weights, something I do regularly for my metabolic health. I didn’t exercise. I didn’t meditate. I wasn’t mindful.

In short, one bad choice became more than one dozen bad choices.

Here’s the thing: I was terrified of having nightmares last night based on those news stories. I’ve already had several nightmares involving my family in the past couple of weeks, one of which was incredibly difficult to process. So I sabotaged my sleep before I even went to bed. I’m not surprised that I woke up at 3:46 a.m. this morning and had trouble falling asleep again or that my sleep was especially restless according to my Fitbit or that my sleep score was ten points lower than usual.

What I am surprised about is how difficult recovering is for me. I have a seven-day intervention I do when I need to really focus on my metabolic health. I told myself I’d start that intervention today. I didn’t. Instead, I stayed in bed most of the day. I just now made my way to my computer. My food choices today aren’t great but they aren’t stellar, either. My digestion is hosed, again, just after I got it back on track. I haven’t exercised. It was a struggle just to get dressed, to make the bed, and to make my way to the living room, where I stopped for a long while and watched reruns of “The Conners” as I mustered the strength to get to my computer. I haven’t bathed. My hair is weird. I didn’t even have it in me to put on lotion.

And it’s cold and the days are short, which makes getting on track that much harder.

This all illustrates how a single genuinely upsetting thing can lead to a systemic issue and why it’s so important that we recognize these kinds of patterns. I know I’ve been talking about me, but I’m not the only one who experiences this kind of domino effect under stress. Many of us do, perhaps most of us.

Right now, I’m trying to do things that will help my body recover. I’m starting with water. That seems doable. Then I have to process these stories about children without doing more harm to myself. I don’t know how to do that. Process the stories, I mean. How does one come to terms with the kinds of things discussed in this type of reporting, things happening here in Utah, across the country, and around the world? I want all living beings to be free from suffering and the causes of suffering, but we’re often the cause, and children should never suffer the way too many of us make them suffer.

A Cascade of Bad Choices

Several alarming news stories have run in The Salt Lake Tribune over the past several days. They all have ties to Utah and involve children. I can’t be more specific without being censored by Facebook. Two of the stories are linked in my feed if people want to read them. There’s a paywall, but you can get an idea of the subject matter by reading the parts of the stories that are visible.

Each story is horrific on its own, but together, they’re overwhelming. I cried most of yesterday morning. It was too difficult to process this news, especially given what’s happened and appears to still be happening in my own family, so I engaged in several forms of avoidance, including employing maladaptive coping skills that threw my metabolism off and undercut the work I’ve done following a ketogenic diet for mental health, doing intermittent fasting, exercising, getting the right nutrients, and maintaining healthy biomarkers.

In short, one bad choice became more than one dozen bad choices.

And it’s cold and the days are short, which makes getting on track that much harder.

Unthinkable

Awake is my least favorite word when I don’t want to be. Our water purifier started making a high-pitched noise a few minutes ago, a steady ewwww like a piece of industrial equipment humming in the distance, at once piercingly but almost inaudibly. I unplugged it, but the sound made me hyperfocused on my tinnitus, so now I’m just a body that screeches and won’t stop.

I took some sleep medicine, something I rarely do. As I wait for it to kick in, night thoughts do their dark work. I don’t ruminate about minor issues like some folks. My waking nightmares are about my father, my family, Oklahoma, me, the ways in which I’ve been purged, and the things I feel like I need to purge that find me at night when I’m closer to my personal unconscious and the collective unconscious than I am during the day.

I had an unthinkable thought that was immediately ushered by my circuitry to every central and distal part of my body. My feet. My hands. My tongue. My scalp. My shoulders. My gut.

What if, I thought. What if it’s true?

This particular thought is a hard one to put on a shelf until I can process it in the light of day. The “what if” feels less like a possibility than a haunting, a visitation declaring what the world is and who I am in it. I don’t like either. I hope I’m seeing an old lady that’s really an owl, like in one of those optical illusions.

The unconscious realms are beautiful and terrifying. I’d prefer a different ratio of beauty to terror right now. I’d rather experience both while asleep, not while sitting in bed awake, my warm dog pressed up against my calf doing what I can’t do: slumber. I feel her breath on my foot. I feel her chest rise and fall. I feel how soft and small and fragile she is. I feel how much I love her and how much I don’t want to be a monster in a monstrous world.

Awake is my least favorite word when I don’t want to be. Terror is my second least favorite. Monster is my third least favorite. To be an awake, terrified monster inside of what is monstrous is nothing I’d wish on anyone.

The House

The house has been doused with gasoline. (You’re welcome in it.) The floor of the house is littered with matches. (Take your shoes off.) The house has no fire alarms. (Have a seat.) The cops don’t respond to house fires in these parts. (Kick your feet up.) The house is on fire now. (Be a love and close the door to save the rest of us.) The house burned down. (We wrote you a loving obituary.)

The loving obituary: We adored them. For some reason, they always looked uncomfortable around us. We did everything we could to make them feel right at home. They died before their time. Sometimes, [insert adjective here] people aren’t meant for this world. We will always remember them fondly.

—

I wrote this July 12, 2023. It’s about how we treat people we want to exclude while they’re alive versus how we talk about them once they’ve died. I was thinking specifically about how queer folks and those living with trauma and/or mental health issues are treated—and the ways in which the very people who exclude those folks from their homes, lives, families, schools, workplaces, places of worship, communities, and societies take no responsibility for their eventual, often untimely, deaths. There wasn’t anything we could have done is a common refrain. Really? Nothing. Not one thing?

I was also thinking about how it felt for me to live as a queer non-Mormon person with trauma and mental health issues here in Southern Utah, where I was routinely excluded and reviled even in literary communities. The poets who run two separate chapters of the Utah State Poetry Society told me they’d close their chapters down if I ever attended them because my work was inappropriate. I was a member of the USPS at the time and had every right to attend any chapter meeting in the state. Their issue was with my gender and sexuality, not my writing, which they hadn’t read.

I’ve thought about this post a few times since the election, so I decided to share it again. We need to bring the way we talk about the dead and the way we treat the living into alignment.

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