Collaborating with My Wolf (part 3)

Fight or Flight or Freeze or …fuggedaboudit — pronounced di-ˈnī(-ə)l! Or … work it out. Cooperate. Negotiate. Give and take. Federate.

Federate? Yeah, no. I’m going to have to forego alliteration here and stick with my go-to word for my favorite type of artistic process: collaborate.

For me, collaboration is not just working together. Rather, it is an intimate process of channeling different perspectives and talents toward a common goal. It’s often challenging and sometimes counterintuitive. It demands consideration (meaning deliberation, examination, attentiveness, respect) and letting go. In my experience, the most rewarding collaborative experiences involve a lot of letting go. Collaboration may not be the best process for every project, but when it works well, different visions and approaches accommodate each other and create something wholly unique that would not have been conceived without all those adaptations along the way.

So, what on this bluish orb teeming with life do I mean by collaborating with my Wolf? How do I accommodate and adapt to and with these diseases? Diseases of unknown causes, at that. Does collaboration mean we will never struggle? Hahahaha! Sorry, I meant to say, no. Hell no! Collaboration is a very different approach than fighting, to declaring oneself a warrior against a foe, but that doesn’t mean a collaborative effort will be free of conflict. No, not at all.

Originally, I titled this series, “Collaborating with a Predator” — then I quickly realized that sounded as if I were aiding and abetting the likes of Jeffrey Epstein. Nope! Hell no! Hell no to the 10th power! I just wanted to convey my idea that my systemic lupus is wolf-like, not just because of the Latin nomenclature, but due to its near-predatory nature. Wolves are true predators, organisms that primarily obtain food by hunting, killing, and consuming other organisms. Sharks are predators. So are humans. And Venus flytraps. Sea slugs, too. But I digress…

Obviously, I’m going for an analogy here. Metaphor, even. I think. But, clearly lupus is not an organism.* It does not hunt for food to bring back to its den of adorable, baby antibody luppies. But it is like a predator in that it claims its host as its territory and causes damage to the organs and tissues within by killing healthy cells. All sorts of prey all over its territory. (SLE is one of the more wide-ranging autoimmune diseases, quite the omnivore.) All this killing depletes the host and almost appears to feed the disease. It may not be accurate to say lupus targets its prey, but it has its favorites: skin, kidneys, heart, lungs, brain. Blood. Joints. Mucous membranes. And without intervention, it just keeps inflicting damage.

So, collaborating with a predator, something that naturally kills and for which there is no current means of eradication — a cure, in this case. There are treatments, attempts to tame the beast, if you will. Beat it back into remission, into hiding. But while some might protect the organs for a time, they may not help the person feel better. Or to know how to live with this enigmatic disease. This refractory disease.

“Lupus is an inflammatory, refractory disease.” That is one of the most affirming sentences my lovely rheumatologist has said unto my self-deprecating person. Refractory, as in resistant to treatment. So, it’s not my fault! This thing is just obstinate. And wily. Almost, slippery. I gotta learn to live with it. Even as it keeps changing, adapting.

I live with several chronic diseases. (It’s crowded round here. No wonder I’ve gained weight!)* One of them, asthma, has been with me since birth. Thankfully, my asthma has been well controlled for decades now. But that was not the case when I was young. As a child, I was persuaded to fight through asthma attacks — to “persevere” — despite drowning in mid air. I had a number of close calls. But hey, whatever doesn’t kill you, may damage your bronchi and your confidence in the adults assigned with your care.

I was told I would grow out of my asthma, but in my first college go-round, the miasma of chem labs and major personal stressors took my asthma to a whole new level. (Yes, I enjoyed that!) I had to stop fighting — on more than one front — and decide to accept and work with my chronic health condition. That shift in mindset led me to change my college major and my long term goals in really big ways — neither quick nor easy, but oh so necessary — and to become an advocate of affordable healthcare and accessibility services to boot.

In 2019, after a long internal struggle about social media, I joined Twitter.* Eventually I found the disability community there. My people! People owning their everything. People fighting for accessibility, economic justice, dignity, respect — but not against themselves. Not against their disabilities. Or their defining conditions or illnesses. Not against who they are.

Embracing my identity as disabled and feeling welcome in a marginalized community has been key to my wanting to live and to live well as I am now. And becoming disabled and proud is a product of my collaborating with my Wolf.

The last five years presented so many significant life changes and challenges — serious illness and disability were not the only components of that big-ass iceberg*— that all together left me feeling unmoored and unsure who I was through much of it. Was I a dancer, still? Or no more, after 33 years? (33 years … It just had to be 33, did it?) What was my role now? What did I want to do? What could I do? Why does everything keep changing?

But now I have a new identity. One that embraces my current reality and enfolds my past roles as well. And a community. I have support. I can be disabled and proud. I can be sick and live well, which is so much harder to do than it is to say. Or type. But that’s all part of the learning, adapting, and letting go of collaborating with my Wolf.

So, I have a collaborator. Not the collaborator I wanted, to be sure. At times I still have difficulty fully accepting this rest-of-my-life companion. However, the more I do — the more I dive into the collaborative experience with my Wolf — the more I learn. The partnership allows me to explore my health and investigate what does and does not help me from that unique perspective. For example, I’m now thinking about my near lifelong sleep issues in a new way. Instead of trying to fit my problem into other people’s models, I have motivation and (dare I say it?) chutzpah to draw up something personal, bespoke, if you will. A combination of a rare sleep disorder, cyclical pain, hypervigilance á la PTSD, and behaviors I’ve adopted over the years that reenact (or attempt to do so) aspects of my childhood abuse. (That last bit may sound strange; however, conscious or unconscious, “re-victimizing” behaviors are not uncommon among survivors of childhood abuse. More on that in future posts.)

Likewise, I have started on a novel approach to the common and very frustrating symptom of brain fog. I’ll write more on that as I discover what works and what doesn’t. Allowing room for failure is vital! In a holistic sense, this partnership is deepening my understanding of some of my unconventional ideas about the practice of medicine from my days as a movement therapist. It has further illuminated for me the reactionary nature of our healthcare system that puts patients on the defensive. That incorporates shame in matters of disease avoidance and treatment, with a subtext connected to morality, sin, and redemption. I’m talking about so-called Western modern medicine and so-called alternative medicine both.

I’m still working this out. Or, trying to. Failing … Succeeding? Learning! Is that the space between winning and losing? Also known as Life?! That’s what this here blog is for, sharing my failures and thoughts and lupine whatnot. I don’t want to fight or be heroic or inspirational. I don’t even particularly want to be a fine example. I just want to be okay, as I am. Worthy. Disabled, yet worthy of consideration. And access. Accommodation. Even if I fail. Especially, when I fail.

Collaboration is the aim. Accepting the shifting sands, letting go, exploring unusual ideas, grieving, relinquishing harmful judgments, adapting, embracing vulnerability. Partnering with my autoimmune diseases promises a bumpy road ahead. And the potential for a life lived on my terms. And maybe a little enlightenment now and again. Which I will share with y’all.

In collaboration with my good Wolf, I shall howl!

One of the yuccas we care for showing off for the pollinators.

*Nor is lupus caused by an organism, as far as medicine knows. Just wtf lupus is — it’s hard to say, other than major malfunction of the immune system. “It” can “attack” almost any organ and system in the body. So it’s like the immune system is now under the direction of Snidley Whiplash? Or, Jared Kushner! My sincere sympathies for all good, decent people named Jared!

*I believe one doc thinks I’m a type of disease hoarder. Calmly practicing my hysterical magic, collecting ills for some ridiculous womanly reason. More on that in the future!

*@aqrobattz Do you get it? Well, do you? Huh? Do you? I mean, seriously, do you get it? Huh?**

**I apologize for the obnoxious neediness of that last footnote!

*Respectfully, aren’t all icebergs big-assed? (Asking for a friend.)

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–