Health

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—

  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.

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.

Proof of Something

The dead have a way of killing the living, as do the living. That’s what I woke up thinking at 3:30 a.m. when my rodeo neighbors flew their helicopter over my house and the walls vibrated and the bed vibrated and I vibrated.

I’ve been dead and alive for months now, maybe years. Maybe since I learned about the sex trafficking in the communities my father moved in and moved me around in.

Maybe since I learned that [REDACTED]. They’re rotting aspens, my family, carved with graffiti and missing bark, their leaves falling dead to the ground. All dead. All hollowed long ago but still demanding their remaining branches reach the sky somehow. For what? A sun that heals? A sun like a dead god who will help them forget how they’ve lived, if you can call it living. What do you call all that fluttering in the air above rot?

Definitely since my brother-in-law began dying from early-onset colorectal cancer last fall. Definitely since then.

Then there’s the call of the living who are dying or think they’re dying, the living I love, the call I will answer whenever it comes, even if it comes in the dead of night like a helicopter tangling the desert sage as it passes over. Or in the form of my husband. Or in my neighbor in Tucson, whose eyelashes are gone from chemo, and more, and more.

I’m tired. I’m sad. I’m scared. In Tucson and elsewhere, Indigenous people are being detained and told they aren’t citizens. And that’s just one atrocity that’s been happening over the past week. You can read about it in the news. I’m not the news and don’t want to be the news. I’m barely a person right now and am certainly in no shape to be reporting on anything.

Last week, I got the results of an extensive genetic test back. I’m not viable. That’s the bottom line. Yet here I am. I’m in the 99th percentile of fucked or fucked up on just about everything that matters. But genes aren’t everything. We know that. Whatever keeps me going isn’t my genetics. I’m in the 99th percentile for atherosclerosis, so yesterday I had the interventional cardiologist review the CCTA he ordered for me in 2022 when I was having heart issues. The test wasn’t done to determine how much soft or hard plaque I have in my arteries, but the cardiologist was able to pull it up and interpret the results. Jon and I stood in the exam room as he scrolled through the images from the test as if my interior was one of those flip books children make. Nothing. No plaque anywhere. My first thought was great. My second thought was why not me, why him. Him being my husband.

Risk doesn’t mean you have disease, the cardiologist says.

It’s good to know risk, but what we want to know is if you actually have disease or are on your way to having disease.

In this case, I’m high risk, no disease. Jon’s low risk, disease. Fuck risk factors. I mean, I don’t mean that. I don’t know what I mean. Just fuck maybe.

I had a dream two nights ago that took the form of a prose poem. Trump had dismantled the EPA and shut down all environmental cleanup sites, telling builders contamination won’t matter once the sites are developed.

It’ll be buried, Trump said. The waste will be buried. Just bury it. What’s buried can’t hurt anyone, almost as if he was talking about his own father, as if dead family can no longer do harm. I’m here to tell you they can. Look at my father in his grave, nothing now but bones caving in, obeying gravity like a falling apple only rotten all the way to the seed.

In the dream, I thought of Midvale, Utah, and the outrage locals felt in the 1990s when more than ten million cubic tons of toxic slag by the Jordan River were haphazardly covered in plastic with no lining underneath, vented, and later turned into commercial and residential developments. Folks in Utah wanted the EPA to do more, not less. They fought hard for more to be done but lost that battle. What would they fight for today? Less? Little? Nothing? Probably nothing. Just cover it up. Abolish the EPA. Who needs them. Who needs water and soil and air and viability for living beings.

In real life, not in the dream, we lived on that slagged land when we first moved to Utah, just down the street from Overstock, which was owned by the now-infamous Patrick Byrne, whose round concrete building with a peace sign on the roof was also on that land. Byrne got a deal on it, and he liked a deal. Jon worked for Overstock and for Byrne. This was right as he, Byrne, was transitioning from being a three-time cancer-surviving neuroatypical genius to whatever he is now. Maria Butina. Voting machines. Deep state. Trump as savior. Bars of gold and hunks of cheese stashed in Utah caves so he could feed and pay his employees in the event of an apocalypse. All of that. We’ve seen a man move from brilliance to chaos. We know what that looks like. We recognize it in others. I recognize the potential in myself. I certainly have the genes for it.

I’m afraid of myself. I feel like I’m full of slag, like my teeth and mind will loosen and fall out any day now. I don’t know how the Trump thing was a prose poem in my dream, but I know my mind was telling me to write. For me, writing is the way through, the only way through. Through to where, I don’t know. That’s the thing. What are we. Where do we start and where do we end. What is starting and ending, even? Some way to explain why we taper into fingers as slender as unlit candles that continually graze what is not us, or so we believe.

Almost as soon as the helicopter made the house rumble, it was quiet again. The house, I mean. Also the helicopter, which had landed on the neighbors’ helipad. But I was still quivering, my organs like china on a glass shelf in a display case nobody can open or illuminate other than a doctor who uses a mouse to drive through me one image at a time showing me how perfect I am, how goddamned perfect I am, despite everything. Proof of viability. Proof of life, at least for now. Proof of something.

You are also something. I can tell you that much. It’s all the news I can muster.

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.

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.

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.

American Sentences

At the intersection of POTS and trauma, my body goes both ways.

Unable to eat food, I drink olive oil and pray my body heals.

I stick my tongue in potassium salt so my legs won’t twitch tonight.

Poetry can heal my trauma, but what about my broken body?

How many times can I fight men who know they’re killing me (and want to)?

I want to live in these lines, but I also want to live in the world.

Tonight my body will sleep. Tomorrow my body will walk around.

—

Diary of POTS and trauma written in American Sentences.

Weaponing Healthcare

Today, my primary care doctor opened my appointment by telling me that he believes I’m a hypochondriac. I’ve survived and/or live with multiple illnesses, including cancer. I live with more than one rare disease, including common variable immunodeficiency, which is serious and life-threatening. I have autoimmune diseases, renal insufficiency, postural orthostatic tachycardia, and arrhythmias. I’ve been treated for atrial fibrillation. I have aortic root and ascending aortic dilations. And I have PTSD and serious, life-threatening, bipolar.

All of this is documented in my medical record at Intermountain, where my primary care doctor works. It’s not in my head. It’s not me imagining health issues that don’t exist. They exist, and I’m attempting to address them. I worked as a medical writer and editor at some of the best institutions in the country for years. When I get a diagnosis or face a health challenge, I do research and have the determination to address the situation however I can.

Today, I was asking about my fasting blood glucose being over 100 for the past two years. That’s diagnostic for prediabetes, but none of my doctors brought the high results to my attention. High blood sugar seems like something I should be able to discuss without being called a hypochondriac. It’s especially important given that my chances of developing diabetes are 3 to 4 times higher because I have bipolar disorder.

I was also at the appointment to discuss my BUN level and (BUN/creatinine ratio). My BUN has doubled in the past 5 months and is above the normal range. Perhaps that’s not an issue, but given my history of renal insufficiency and the fact that lithium, which I started taking at a higher dose 5 months ago, causes kidney disease in about 26 percent of patients, the higher BUN level seems like a valid issue to raise.

Healthcare systems don’t seem to welcome the type of patient I am—one who’s female, has chronic health issues, and has a mental health diagnosis. We wait years or decades before our issues are taken seriously and addressed. By that time, we often have medical trauma because of how the healthcare system has treated us or our conditions have progressed, often irreversibly, because we were gaslit into thinking it must all be in our heads, a point our doctors belabor.

If I can’t approach my doctor for routine care, explanation of test results, or to discuss a health concern—the very things primary care providers are supposed to do with their patients—without the entire encounter being dismissed as evidence of a mental health problem, then why am I even trying so hard.

This isn’t the first time this has happened here in Southern Utah. Another doctor at Intermountain denied the fact that I had atrial fibrillation despite a preponderance of evidence that I had the condition. I was denied the medication I needed because of his insistence that I didn’t have afib. Yet another doctor at Intermountain tried to tell me my diagnosis of common variable immunodeficiency was unfounded despite the fact that I have extensive documentation of that disease from accomplished immunologists who know how to diagnose and treat immune system dysregulation.

I’m tired. I’m tired of this treatment. I’m tired of this sexism, this ableism, this dehumanization. I’m just tired. These attitudes and behaviors on the part of doctors cause unnecessary and severe iatrogenic illness for those of us who are subjected to them. I can’t carry that burden on top of my actual health and mental health issues. I’m tired.

Take a Message

So I’m ill again. The usual with a side of falling to the floor hard this evening when my lower extremities tightened and everything from my toes all the way to the middle of my thighs contorted until I looked like something with gnarled roots—maybe Donne’s mandrake—that had been unearthed and hosed off before being tossed to the ground until it could be transplanted elsewhere or fed to the wood chipper or cut into little slices as part of a fiber-filled culinary adventure.

I mean, I know I’m not fibrous. I’m meat and bone. But I’m doing an extended tree metaphor thing here, so just let me be fibrous for the purposes of this essay.

My floor routine went on for several excruciating minutes and I couldn’t get my legs under me and I couldn’t pull my legs and feet and toes back into their proper shapes and relationships with each other and I couldn’t massage the tension away and the pain was like someone had exposed me to a nerve toxin and I couldn’t reach my phone to call my husband for help and it wouldn’t have mattered anyway because he’d misplaced his phone and so I had to scream as loud as I could and don’t worry the neighbors never come when I do that and my husband burst into the room and found me splayed and broken like a cow that’s about to be scooped up from the fecal mud and dropped onto a truck headed for the rendering plant because she’s too sick to walk herself to her own death like all respectable—all good—girls should, even ones with spongiform encephalopathy.

I’m just working the cow metaphor with that encephalopathy reference. Don’t worry, I don’t have mad cow disease. My diseases have other names, and so far at least one has eluded naming. That disease is all experience, the way Hellen Keller’s whole world was before water ran over her fingers and forever changed the way her body and mind met the world.

Reuven Tsur talks about Keller in his theory of cognitive poetics. I’m not making baseless statements about her just to illustrate my point, so please don’t get all, You’re being ableist and using Hellen Keller to do your dirty ableist work, Karen. The name’s Dana, and I’m trying to tell you how bodies break and how we live in them anyway. I’m trying to tell you I took a little spill. I’m trying to put that spill in a larger context that some of you may find important. Bear with me. Bear down. Grin and bear it. I’m trying.

My husband panicked the way he does when he has to confront the fact that I’m seriously ill. He got me up off the floor, then went into a fugue state in which he forgot about everything other than his lost phone. He flitted around in flight mode looking for the phone because it’s easier to be upset about the phone than it is to live through more than two years of thinking your wife could die, on top of fifteen years of intermittently thinking your wife could die, let alone this very moment when you’re seeing more evidence of your wife’s potential death on the horizon or at least more data that suggests whatever’s going on with her isn’t going to go away any time soon, if ever. And what do you do with that as a spouse? How do you live with a splintered wife for the rest of your life?

I almost said upper thighs in the first paragraph of this essay, but we don’t have tiered thighs. We just have the one main set, one main set of thighs. It’s the way I also think I have two noses, when I just have the one nose with two nostrils and the way I always think I have two butts because I have two butt cheeks.

The body is confusing. Taking inventory isn’t as straightforward as it seems. At one point in American history, a window was considered a single pane within a larger window. So a window with six panes counted as six windows. Why? Taxes. Taxes were assessed per pane, so each pane became a window. At least I think that’s true. My rhetoric professor, Dan Mahala, told our class that in college. This was in the ’90s, when institutions still taught actual history—or at least tried to—not the ticky-tacky history being peddled today.

If U.S. politics applied to bodies—which of course it does, mainly those of women and trans and nonbinary folks, but bear with me again for the purposes of this essay—we might very well have been taught that we have two noses and two butts, especially if that meant we could be charged more for lugging all that flashy and fleshy gear around. Two butts! Two noses! How indulgent of you. One of each is subject to the luxury tax! You clearly have spares that are purely ornamental. (Don’t tell the tax collectors about the set of kidneys dangling in our trunks or the lungs or whatever else is doubled up in there like sets of animals shuffled onto a dingy for safekeeping during what looked to be the makings of a pretty big storm.)

All that contrived body taxation would be a real pane, wouldn’t it? I mean pain. And trust me, the body is definitely a pain.

But I digress. Who turns to stone? I’m asking because that’s what my body felt like today. Sisyphus, maybe. You could argue that pushing stones turns him into the very thing he’s pushing: Something that moves but that isn’t quite alive; someone whose stony but who isn’t quite mineral.

Demosthenes filled his mouth with stones to learn how to speak clearly. But that’s not the same thing as turning to stone.

Oh, I know, I know! It’s those who gaze into Medusa’s eyes!

Whose stare must I have returned to be cursed this evening? It must have been someone in my dreams. I’d just woken from a nap when the compacting began, soles first, a crushing invisible force making me denser and denser. I felt the hardening creep upward. The stiffening. The molecular tightening. I couldn’t do anything about it. It was like watching a virus spread through a computer taking out file after file after beloved file and replacing them with junk code.

I realize I can’t make the stone metaphor work alongside my earlier tree metaphor. Adding the computer-virus reference is making things even worse. Let’s just acknowledge all of that and move on. I don’t have time to put the right slant on this truth. (My apologies to Emily Dickinson.) I’m sliding downhill, and everything I write is sliding with me. Besides, wood can turn to stone. I know. I’ve seen it. I have a chunk of opalized palmwood right here that makes my case for me.

That rock is science. It’s fact. And like science and fact, opalized palmwood is beautiful when you place it on a black light in a dark room. It looks like magic and could be passed off as such if your audience doesn’t know any better. A divining rock. A soothsayer’s stone. Not the soft, boring sandstone my body is becoming, the kind of stone miners here tossed to the side when looking for the good stuff like silver and uranium.

But guess what? I tricked you, and you didn’t know any better. Petrified wood isn’t stone. My science wasn’t science, and my facts weren’t facts. Here’s the truth. You ready: Though the phrase petrified wood or petrified tree comes from Ancient Greek πέτρα meaning “rock” or “stone,” literally “wood turned into stone,” petrification doesn’t change organic wood into stone. It merely preserves the wood’s shape and structural elements.

Sometimes language gets things wrong. Sometimes, even the Ancient Greeks got things wrong. Is it so hard to believe that sometimes we get things wrong? That we get things wrong most of the time, actually?

Maybe I’m not turning to stone. Maybe parts of me are just undergoing a change, being preserved. My shape. My structural elements.

My husband found his phone. It was in the garage. He went out there frantically looking for it like a prospector trying to lay claim to a seam of silver in a sandstone reef in a town called Silver City in the 1870s. He cast aside all the piled-up crap garages tend to take on as his world was reduced to two things: phone and not phone.

When he found his phone, the world made sense again. I was in a chair by that time live-tweeting the unfolding disaster. My upper body still worked, which meant I could be a writer and write things down. So I wrote things down just like Richard Siken says we should. What else would you have me do? Come unglued?

This is marriage. This, too, is marriage. Sometimes it’s broken. Sometimes there’s no diagnosing what’s wrong with it. Sometimes it’s all experience and no name and no remedy. Or maybe no remedy is needed because legs are not roots and flesh is not stone and a phone isn’t something jacked out of the Earth for profit or for prophets.

Sometimes a phone is just a phone, and we can use it to hear the voice of the person we love more than anyone else on the planet. Sometimes we can take that call. Sometimes we can’t no matter how much we want to. We just let it ring through to voicemail and hope the love of our life leaves us a message that we can receive when we’re ready.