Pandemicon: The worth of (some) human life

Underlying Conditions Lady Rants: I kvetch; therefore I is!

Content Note: My born of the pandemic alter ego, Underlying Conditions Lady, is unapologetically political and spicy. She speaks the hodge podge vernacular of my life: Caucasoid, Jewish American raised by Germans and an African American, living in New (shiny!) Mexico. Educated. Lower middle class at my luckiest. You’ve been warned.

And here we are, back again to where we started, only worse? 9 months and we have birthed what exactly? I love surrealism as an art form, but I have to say, I’m not a fan of it in public health!

When was it that I became Underlying Conditions Lady? When did I start truly fearing for my life? (Which is a big shift for me, I must say. I’ll save that for a later discussion.) Already in February there were the pronouncements, the risk categorizations: the elderly, diabetics, those with chronic respiratory diseases, cancer, cardiovascular disease, other underlying conditions.

This year would have been a really good time to educate about the difference between risk and cause and how those play out in disease. But, nah. Instead it was the usual who will give us the best return on our investment. Who has the stronger immune system and who not only gets but actually deserves modern medicine’s resources to help the worthy immune system hosts keep living their superior lives.

There is no such thing as a strong immune system. There, I said it. (I propose flexible. Agile, adaptable immune system is what you want. Yes, another topic for a later date!)

But an immune system can most def be compromised! And it don’t come cheap! HIV/AIDS, MS, ALS, SLE — but a few of the expensive abbreviations that will turn an immune system astray, if not turn it to the dark side of the force altogether. And I mean expensive in all the ways!

Underlying Conditions … I feel sure they really want(ed) to say preexisting conditions, to use the cost-benefit language of insurance. Your health in reference to when you started paying into their bottom line as opposed to, say, the context of your life. Around the so-called civilized world, people with Underlying Conditions sick with COVID-19 were denied ventilators and other potentially life-saving measures so that “healthy” people sick with COVID-19 could benefit. That they should live and we die was the difficult but ethical decision, as borne out by statistics. Or rather, the power brokers’ interpretation of the data. The odds of survival. For how long. Future productivity – in all the ways. And good old Quality Of Life, not only quantified, but monetized.

If I catch this thing, I ain’t got no chance.

It had been building for some time, the recognition of my relatively new status in my country as a disabled person. Now in 2020 it shines like a blinding beacon: I am well and truly marginalized!

In the spring I had the briefest of arguments on Twitter about the ethics of ventilator rationing. I could feel the abject horror of my opponent at the suggestion of first-come, first-served. But don’t all lives matter, Babycakes? Yes, that means you might get left out. Yes, you who have been deemed superior. This is “all [people] created equal” in action, Honey Shnoogums! Feels like Scheiße to be treated as if your life isn’t worth saving, doesn’t it? For how ever many years you may have left. At whatever quality others assign to it. Regardless of whatever metric you hold dear. What you’ve contributed to society to now. Your potential. How well you are loved and by whom.

Meanwhile, ethics demand we work to increase resources and decrease need. But we are stuck in this system that can’t quite shake its feudal roots. The many, the people on whom the economy truly relies, are the necessary foundation as a whole, but are expendable individually. Caught between a rock and a hard place, the Administration decided to deny the rock and act as if the dead bodies stacked up underneath them could prop them up, eventually getting them clear of the situation.

I do not apologize for the graphic nature of that metaphor.

Like so many nameless, faceless — but still masked — others, Underlying Conditions Lady has essentially been in quarantine since mid-March. There were a couple-three months when it seemed I might have a chance, when at least my state of New Mexico could maybe spare a ventilator or other limited and pricey measures for such as me. But no more. Again we are stretched to the breaking point. Medical providers are forced into the role of heroes, instead of people doing their jobs with adequate resources. Care is being rationed. And among so many other things, bodies are piling up — quite literally in some places. (Not to worry, we have inmates moving them. For a whole $2/day! With near adequate PPE, even! So not quite slave labor …)

T S Eliot proclaimed April to be the cruelest month. As that’s my birth month, I have some issues with that pronouncement. (My mother did an awesome impression of the guy reading The Wasteland. Just thought you should know.) November is feeling like the most surreal month, with November 2020 topping the charts. The Virus Dominator actively plans the continuation of his reign —claiming his pink slip was lost in the mail, which doesn’t exist because it did not work as he designed it to not work — and there are people being treated for COVID-19 in hospital, simultaneously denying they have COVID and demanding better treatment for COVID. (I have thoughts on how this denial might come to be. Yeah, that’s right. What we got here is yet another topic for another time.)

And so, in the words of my friend, the late, great Gurubhai Khalsa Singh, I’ll leave it there for today. Until next time, I remain yours in autoimmunity, Underlying Conditions Lady

Tales from the Infusion Clinic

Here is where I shall occasionally draw back the curtain and let you in on the best snippets of gossip and whatnot heard during my monthly visit to the Infusion Clinic, during which I spend the afternoon in a gray lay-z-boy enjoying a bag of drugs with other gray-recliner-ensconced “stuck-up” types.

22 July 2020

Sad to say, but for the first time in nearly 1.5 years of regular visits to the clinic, I overheard stereotyping and intolerance. Although the subjects weren’t called out by subspecies, the grouping by color made the racism impossible to ignore. We just don’t have many varieties of hummingbird in New Mexico!

⚠️ Warning: What follows is an example of ornithological racism*…

“Those orange hummingbirds are jerks! Who knew? Bright yellow and orange. The plain ones are nice – with green wings – but those orange-red ones are always fighting over the feeders.”

Yes, dear readers, male rufous hummers are flashy golden, orange, red and can be quite territorial. I am a birdwatcher and lover of hummingbirds and I can assure you that all of those little hovering wonders are jerks. Generally the males tend to be more aggressive dillweeds than the females, but the womenfolk can lay down just as well as the men if they want. And in the midst of summer round here, they often do want. Yup, even the unassuming female black-chinned, described above as plain with green wings.

Dearie, you are not a hummingbird! Photo description: Male ladderback woodpecker hangs precariously from red base of hummingbird feeder.

*aka Bird Bias. Not to be confused with Big Bird Bias, which is absolutely fine between consenting adults — not for me to judge. Though I will say, yellow is not my color. Especially unclothed. Holy frijoles, I’m pale!

I’m a woman of contradictions. I adore yellow/golden flowers, fish, birds, etc. Photo description: Wealth of sunflowers surround a wooden post with a partially obscured house number and a light fixture.

And-a Karen-in-Nah

Following is a letter I submitted to the fine folks of The Atlantic in response to their request for feedback on their app. I had fun. Judge as you will.

As much as I love reading The Atlantic through the very well designed app, I just don’t know how much longer I can deal with the passive-aggressive greetings before I lose what little sanity and self worth I’ve been able to hold onto in these pandemic times! It’s midnight here in New Mexico and I wish to relax with 30 minutes of reading, but my app — shall we call her Karen? — chooses to admonish me with, “Still awake?” Oh no, I’ve been caught! I’ve done something wrong! I can feel the shame in my body, face burning, chest tight, stomach — I don’t know how to describe the stomach thing. Then I think, “Obviously I’m awake, Karen. Unless there’s such a thing as sleep-phoning? Sleep-tabletting? Sleep-smart-thinging?” I gird up my loins (figuratively, as my actual loins aren’t much for the girding) and scroll through the highlights for Today like the desperate, late-night addict I apparently am, my interest piqued here and there, my mood lifting with anticipation of some satisfying reading, only to have Karen emerge at the end to shout at me, “Go to bed!” I’m left feeling small and wanting. I was looking forward to this. But Karen knows best. Or does she? I start negotiating with her. “It’s only a little after midnight, not 3:00 a.m.” “You know I’m on prednisone again for the lupus and I’m just not going to go right to sleep?”

Wait a minute, who the hell put Karen in charge of my schedule? Shouldn’t I be in charge of Karen’s schedule? Why can’t Karen tell me what a great reader I am or show a groovy graphic or really anything that doesn’t make me feel like a piece of crap for wanting to enjoy the reading room after hours? My private reading room, at that. Nothing would also work. I’ve looked in Settings more than once to see if there was a way to simply turn off the “Greetings” but no joy.

Please help. Please.

Sincerely, Debra Landau, Abashed Late-Night Reader (formerly Unabashed)

Superperfectionisticshamefilledprocrastinatious

And now for something completely different … kinda sorta maybe. When comparing similar things, my Aunt Lore liked to say a thing was “exactly the same only different.” So, yeah, it’s like that?

Three weeks ago I quietly went public with this here blog. My plan was to promptly add a Part 3 to my opening trilogy and scan in my hand-drawn logo, followed by an email campaign. Perfect!

But I couldn’t do it. I labored over Part 3 – in part due to a heavy brain fog. “Like pea soup,” is how my folks used to describe the thick fogs of my Pacific Northwest childhood home. Fact check: Fogs not nearly that green or smelly. (I hate split pea soup. Can you tell?) Also, I broke a tooth. It’s gone now, in its eternal resting place in molar hell. Grind in Power?!

I am a recovering perfectionist and I had me a relapse! Actually, my real addiction is to shame. According to Brené Brown, shame is the root cause of perfectionism and of much procrastination. I could find a link to BB … I’mma gonna let that go for now.

So, in the spirit of the following Sam Shepard quote, I may post other stuff before getting to Part 3: Collaboration means what now? (Non-working title)

I’m a great believer in chaos. I don’t believe that you start with a formula and then you fulfill the formula. Chaos is a much better instigator, because we live in chaos – we don’t live in rigorous form. –Sam Shepard–

The Duchess Draymond Pugbelly is ready for her romp in the snow!

Photo description: Adorable, black, short-faced dog wearing blue vest perched on closed SUV tailgate.

Collaborating with My Wolf (part 2)

The Lupus Foundation of America (LFA) dubs its members with lupus, lupus warriors. Being cast as a perennial fighter due to chronic disease is not just an LFA thing. I’m also a migraine warrior, according to more than one support site/online community. Although I haven’t seen similar troop-like nomenclature for my other ills (Sjögren’s soldier? Nope. Myositis mercenary? Nah.), the notion of being thrust into battle with one’s disease is pervasive in many, if not most, types of medicine, wellness, healing, adjunct support groups, etc. A diagnosis serves as an induction notice.

Assigning the role of warrior to folks with lupus and other chronic illnesses seems to work for a lot of people. If it works for you, I am sincerely happy for you! I have no desire to dilute or deny something that helps others. At the same time, it really doesn’t work for me. And I’m confident I’m not alone. Well, pretty sure. Kinda sorta … Okay, my neurotic tendencies aside, this is for all those other sick non-warriors out there.

As is the case for most people with lupus, getting to that diagnosis was a long slog for me. Three years before, I was diagnosed with dermatomyositis, a rare autoimmune disease of skin and muscle. And 7 syllables! Unaware at the time, I jumped into the warrior role. I was following expectations, if not orders. Medicine and wellness are designed around doing one’s individual utmost to get better, be well. Fight the good fight. It is your responsibility to procure the best medical care, provide for your changing needs, do the research (but be careful!), rise to the challenge and live right – eat, sleep, exercise, reduce stress just so. It ain’t easy. In fact, it’s so hard it takes the heroic efforts of a warrior. There are no guarantees. But there is the promise of “victory.”

So seductive! Of course I want to be healed, to feel better —and not just temporarily. Or at least regain some lost ground. I definitely want to be the good patient and do everything the right way. I’ve had more than my share of hardship,* so I know I can persist, can do hard work. And, um, yeah … I’ve fantasied about others recognizing my struggles, praising my fortitude. But after a couple tours of duty, I realized this mindset was a trap for me.

Because – and this is truly radical, in my opinion – there is no right or wrong here. Lupus is not my enemy. It is a mysterious disease process in which the immune system attacks healthy tissues in the body. While I like to anthropomorphize as much as the next guy,** there is no clearly identifiable cause of lupus (or my other diseases) like a pathogen to cast as nemesis, despite a lot of very good research. And my immune system continues to function as it is supposed to in some ways, while also malfunctioning. As we have learned in these pandemic times, the immune system is hella complicated!

No, I’m not going to start smoking cigarettes or anything clearly contrary to my living as well as I can. On the surface, not much has changed, really. But philosophically, I’m letting go of the notion that I have to fight to live well. I reject the idea that accepting my health as is and embracing my disabilities in order to best accommodate them is defeat. I’ve spent most of my life fearing I’ve done wrong, convinced I am wrong. I am so ready to be done with all that! I do not need to be anyone’s hero or inspiration. I just want to live well as I am. I accept myself as chronically ill and disabled woman living with my very own inner wolf.

One of our ornate box turtles takes it all in. (Photo description: Turtle with green head and red eyes, with neck extended, surveys environs.)

*Where do Hardship Shares get traded? NASDAQ? S&P? Why on earth did I stock up on those?

**Obviously, The Next Guy is your go-to expert when it comes to trading in hardship shares!