Avoidance and Punishment

Content Note: There are curse words in this post. If you’d like a version of this post without curse words, well, Sweetie Pie, you is shit outta luck. There is also a reference to a gruesome self-harm fantasy, toward the end of this overlong piece. Plus a book recommendation and a photo of a super cute dog.

I feel the need to apologize. And with it the need to justify my absence. I know this makes for a bad apology, but I’ve also been thoroughly immersed in the belief that an unexcused absence is … well, you know, inexcusable. So, if one checks out, drops the ball, retreats, doesn’t meet expectations and thus disappoints others and feels bad about it and wants to make it all right, then that personage, that disappointing lump of humanity, should just say, sorry, I let you down, I will try not to do it again, though I might because you never know based on this variable and that, meaning there’s context, but this is about you not me, so goes the rule of best amend making, excepting of course my regret and my reparations and my learning from how all this came to be, but you don’t need to know all that, unless you’re my boss or my teacher or the jury service and need a note from my doctor or, somewhat ironically, you’re my doctor and need at least 24 hours notice and a good excuse or a note from another doctor or I’m going to really have to pay!

I do apologize for that extra-super-fuck-long of a runaway sentence. I should edit that stream of consciousness crap, but I don’t have the energy and I guess I’m just not that sorry, truth be told.

Truth be told. Ha!

I am a much better liar than I profess to be. I’ve said more than once that I’m not a good liar, but that’s, of course, a lie. I do usually get caught with the straight-out lie. Historically, the consequences of my getting caught have at been spectacular and coincidental. But lying by omission, keeping secrets, deflecting, minimizing, etc. —I’ve long done all that quite well. And, of course, lying to myself is where I really shine. Maybe you knew that already. Ok, sorry I wasted your time.

Is it actually possible to waste someone’s time? Time is … a phenomenon, a dimension, a construct … Time is hard to define. Time is not something owned, stored, traded, manipulated, used inappropriately. It is relative and unstoppable. It can’t be stolen. Or replaced. There are no time byproducts. No barrels of toxic time waste buried next to vats of gravity sludge.

I’m sorry. I know I lost you all with that last paragraph. It’s just that I was raised thoroughly steeped in the religion of WasteNot and I’m having a hell of a time giving myself some goddamn, ever-loving slack! I know what I want to get done and what I need to get done and I’m getting more and more accepting — if that’s the right word and I’m just very recently not entirely sure it is — of what I can do, but I don’t know what to do about them not syncing up. My ducks are not all in rows ready for the spooning. I am sinning. Wasting resources. Time. Money. Smarts. Food. Energy. The Venial and Mortal Sins of WasteNot.

And my penance is …?

I’m a Jew raised by ex-Catholics, so I’m entrenched in guilt. And the need to punish myself. I’m not a masochist. Not literally. Ain’t no sexual pleasure involved. In fact, I’ve had me a couple of coital headaches and unholy sheeeiiit do those suck ass! (And not in a good way. No, not at all.)

If only I could quantify my energy into discreet utensil units, then all would be well and there would be no waste. Right? Sporks feel more my speed than spoons. I need at least the illusion of some stabbing power, some targeted selectivity. And the spork is my talisman for my time inside — my 8 days in the mental hospital with chair yoga, music therapy games, crosswords, and no psychotherapy whatsoever.

In sorry, but I just don’t get Spoon Theory for myself. In practice.

For example, I had some trouble walking yesterday, but my trusty Rollator got me both to and from my long-awaited Pulmonology appointment, which was a lot of questions and ordering of tests, which was what I expected. My one big thing for the day complete, I didst doth rest and so didst then perform solely duties as needs must of a less taxing variety and verily not requiring myself to be fully upright and locked in.

Yet today, I can barely get out of bed. Last time this happened I started looking at folding wheelchairs. Wanting a wheelchair brings up so much! Fear, sadness, money concerns, flooring issues, questions, more questions, fear …

Damn, woman! Stop! Ok, first I’m sorry about the “didst doth” stuff. I had fun, though. Second, Spoon Theory is great for many. I just can’t make it work for me. Total spork-less loser. Also, I’m getting a lot of internal backlash for revealing I spent 8 days in a mental hospital — and maybe even more for revealing I did not receive promised care while there — but also for having not yet written about all that which I both very much do and do not want to do.

And I lied about having trouble walking today. Actually, that was last week, when I started writing this here thing.

This week it’s trigeminal neuralgia with migraine plus neck pain and immobility that’s got me down. Way down.

Trigeminal neuralgia, aka facial pain, aka suicide disease.

In addition to every other shitty malady I have, I have to have this goddamn, motherfucking, cocksucking nerve pain with the triggering up the ass nickname of “suicide disease” too?!

(Those are the only swear words I know. In English, that is. Entschuldigung. ¡Lo siento!)

I think this post may be about fear. Have I written about fear before? I’m afraid of repeating myself. I’m also afraid I repeat myself a lot. And yet, not nearly as much as I need to. I’m afraid of not making sense. Of not knowing that I’m not making sense. That no one will tell me that I’m not making sense.

Or that they will and I won’t understand.

My mother used to laughingly say that I was a very smart person with no common sense. She was herself a very smart person. I used to believe that statement of hers was more loving than insulting. Reasonable and accurate. Nah. Sorry, Mom. You were laughing off my trust in myself, my ability to learn from my mistakes, and replacing it with fear that I lacked the basic tools most people have in common and take for granted.

I forgive you, Mom. You were raised on fear. People fed off your fear most of your 60 years.

If you are right now thinking of that FDR line, “We have nothing to fear but fear itself,” please know that I am harboring homicidal feelings for you.

I’m sorry! That’s another lie. Hyperbole-style. That FDR line makes no sense out of context. Look it up. I dare you! However, it has been quoted ad nauseum for decades with no hint to its original context, so that it’s truly no wonder so many jump to it when good old fear comes up for discussion. Or dismissal.

I’m sorry, but autocorrect filled in “God old fear” and that tickled my figurative funny bone.

At one point during my lumbar puncture (aka spinal tap), indescribable nerve pain shot down my left buttock and the full length of my left leg. I alerted the doc, moving only my mouth, eyelids, and all necessary for continued breathing for fear of making it worse. Doc said “tickled” my sciatic nerve. Nope, sorry, tickled is not the appropriate word here!

Fear is useful. Fear keeps people alive. Fright leads to flight or fright. Or freezing. (Sorry, that’s where the rhyme ends in English.) Make a goddamn decision! Now! Do something!

I don’t know what to do and I’m really sorry about that.

Have I chosen to freeze out of fear when it’s really not an f-word situation at all?

I’ve had this here blog for over a year now. Been thinking about it for I don’t know how long before that. I have plans for promoting it. Right after I finish this other task. And then there’s that other stuff I gots to do. Meanwhile, this thing and that thing came up. Far higher priority! Like, obv!

Sorry, but shouldn’t that be ob-v?

Self-promotion is so very hard for me. It’s always been a challenge. Was a easier when I was running an artistic company I started. Then I could promote the rest of the company and share the spotlight with them. I do enjoy receiving recognition for my work. But just me, on my own in the PR spotlight …

Sorry, sorry, sorry. I cannot continue. My internalized mother does not approve of the syntax of that last unfinished sentence of the last paragraph.

Oh, how I do enjoy punishing myself for my perceived transgressions! Probably why my mother has come up in this post, as she was likewise gifted in this realm. And really, truly, that is where I waste my energies the most, convincing myself of my lack of worth as a human being. Hurting myself in various ways — I am a rather creative person, you know (humble brag) — for somehow not deserving what I would not deny those I like the least. I know this sentiment to be true, as I honestly wanted the best, compassionate treatment for he who some might call my worst enemy.

I’m sorry I’m not more prolific with posts. And that I haven’t finished and posted so many others, temporarily lost in the fog of my gray matter. Or maybe lying in wait in a white matter lesion? Sorry, that metaphor doesn’t really work. Or does it? Not demyelinating lesions, by the way. Ruled out MS years ago. Just migraines. Occasionally, reality-bending migraines. Sanity-questioning migraines. Forgot how to tell time migraines. Fantasies of halfway scalping myself and then pulling individual hairs through the gap knowing that wouldn’t stop the migraine probably but it would be one hell of a distraction and might just get close to equaling the agony if only I had the strength and the will to do it migraines.

Oh, and also maybe lupus. Tricky wolf.

I have no excuse. I have every excuse. I tried to read an article or blog post or column or whatever on what brain fog feels like, written by a fellow chronically ill foggy brain-haver while in that unclear cognitive state, but I couldn’t do it. Yup, I was too foggy!

Last week I thought maybe this post would be about burnout, as defined by the most excellent and decidedly feminist book, Burnout: The Secret to Unlocking the Stress Cycle, and I would disclose some past events in which I have only now realized I have not completed the stress cycle. In part, because of lying to myself. And others. By keeping secrets. Out of fear. Not the useful kind.

Anyway … maybe I’ll start that big PR campaign next month, when the big sale I haven’t written about yet is final.

If you are right now thinking about recommending a handy-dandy webinar or webpage or any such thing that will guide me through “just a few easy steps” and then maybe a follow-up task or three, then please know that I’m feeling a return of those homicidal tendencies, as it seems you have not understood at all what I’ve been writing here.

And, for that, I’m not sorry.

Face of black dog, wearing blue, illuminated glasses, and with big, open-mouthed smile. — The glorious Princess Holly Peño did not know the meaning of the word ***sorry***. Due to her being a dog!

Sunday Unfunnies

Content Note/(trigger warning): Among other things, the following post discusses death and grief and includes a brief description of a violent death.

Whelmed, am I. Totally and completely whelmed. More than that. Beyond whelmed. Uber whelmed. Utterly overwhelmed. Which is redundant, technically. (Look it up. I dare you!)

Welcome to Sunday morning thoughts with Underlying Conditions Lady in the midst of another prednisone-mediated lupus(+) flare. Here you’ll find a mixture of to-do lists, pain scales, grief, dogs at play, gratitude, shame, feelings of obligation, feelings of failure, loneliness, word etymologies, questions of science, questions of art, the letters P-T-S and D, and a few audiobook highlights, all in a misty fog, flavored with a soupçon of irritability á la that little bitter pill.

Prednisone, it’s a hell of a drug!*

I’m more than two weeks overdue for my monthly infusion of my DMARD, because of yet another urinary tract infection.* Antibiotics and my Biologic, a sophisticated immune system … modifier(?) … modulator(?) … Wolf tamer (?), do not get along. They’re rather at cross purposes. And this was a kidney infection, in truth. An aggressive affair. You know how colonizers be!

All I want to do is sleep. Which I do. Badly. That’s not really true. I’m working on the sleep thing. It has taken a lifetime and now chronic, debilitating illness (yeah, I said it) and the various resources of the internet to sort out which sleep disorders I do not have, the one I very well may have, the continuing role PTSD plays in my bedtime behaviors, and a commitment to being kind to myself to arrive at this place of lovingly addressing my sleep issues. That last part is the hardest. But you probably guessed that.

The Wolf in predator mode that is a flare of autoimmune disease activity and the common yet somehow extraordinary drug that is prednisone are at odds when it comes to sleep. They’re at odds regarding just about everything, really. Except they both destroy the body from within. They are terrible houseguests, awful to their hosts. No, that’s not it. It’s more like a hostage negotiation. In your home. With a repeat offender. And the only way to achieve any success is with that negotiator you hate, who wrecks your house — every single time — but is still the only one who knows how to keep the offender from stabbing you in the gut repeatedly.

But this post isn’t about having a flare. Or prednisone. Or sleep issues. It’s about … something. Being foggy? Overwhelmed. Needing a break. Ok, wanting a break. I want a guarantee that no more big stressors will hit until, say, after I finish the taxes. Yes, I know that won’t happen. I mean, I won’t even be able to get this post finished and published this sunny Sunday, due to the interruptions and intrusions of Life in the Foggy Brain Lane.

Did that sound whiny? Am I doing it? Am I doing it right?! My psychotherapist is a believer in whining. Moaning, that is. Expressing one’s pain out loud. I totally agree — in theory. For other people. Although I’ve been seeing this therapist for several months, she still feels new. Fresh. I like her a lot. I want to please her — and I know I need to be careful about that impulse, or at least aware of it — but, moaning out loud? Me? I mean, even my autocorrect avoids the word! Meaning … Moving … Morning?

What about … Mourning?

500,000 dead. Well over that. In just under a year of COVID-19 in the US. I correctly predicted the date we hit 150,000. Nailed 250,000. Was within two days of 350,000. Then I stopped that mental “exercise”. Not good for my mental health. And other things occupied my mind. Christmas in the ER. Not long after S moved out. Because her aunt died. Now it’s lonely here again. Then the insurrection was live on television. And Facebook. Reddit. Twitter. The ‘Gram. And then T died all of a sudden. I wanted to hug her mother for a week, but we just talked, masked, over the fence. Texted, a little. That was just a month after Aunt I died. (Not my aunt.) Valentine’s was Aunt P’s first yahrzeit. My Aunt P. But not only mine. I miss her. May 31st will be our dog Duke’s 14th birthday. If he gets there, that is. He’s been a very, very good boy.

This is about loss.

In less than a year five people died on our street. None from COVID-19. Not directly, at least. Three deaths were due to long-standing health problems that probably weren’t being treated as well as should have been due to pandemic conditions and were likewise exacerbated by the stressors of the pandemic and the lack of concern by so many for one’s fellow human being. One person died by an overdose that may have been intentional. And one death was of a man having a mental health crisis. Body cam footage shows he had a knife. The police disarmed him with several gunshots to his body at close range.

A descanso* marks the place up the street where he died. There was a small, peaceful, at times joyous protest there last summer. The cops parked a couple squad cars in the middle of our street, a couple doors down, and hubby and I, masked, watched them standing there, drinking sodas, talking and laughing easily with each other, their torsos heavy with armor and weaponry.

I’ve been dealing with loss all my life. I should have an honorary doctorate or two in loss by now. Except the older I get, the more unsure I feel about what I know. And don’t know. I know I feel a heaviness in our neighborhood. As if all this absence left by these losses and their rippling effects has a weight to it. We can bear this unseen weight, isolated behind masks well enough. For a while, at least. But, dense as it is, this absence is also weightless somehow. Intangible. Just out of reach. It hangs there — like a fog. Yes, time heals. But community is a balm like no other. Funerary rites are important. Displays of remembrance and communal grief. We need follow up, too. Restoration. Good grief. My neighborhood is hurting.

Good grief! I remember being very confused by Charlie Brown when I was a kid. Why was he shouting out grief? Aren’t you supposed to keep that sort of thing quiet, locked within you, gnawing at your joy and sanity slowly over time? And why did he keep playing football with punkster Lucy? Given my so-called best friend at the time told me in all sincerity that I was bound for Hell, I probably should just move on.

My basic thesis of loss has long been thus: Each relationship is unique. Each relationship makes an indelible impact on each party. The more intimate the relationship — for better, worse, both — the more intricate the connections. Death severs that relationship and thereby changes the survivor further. I had an Aunt P. I loved her. She loved me. I love her still. I am forever a person who was deeply affected and influenced by my Aunt P and now I am a person without her. I am grateful. Truly grateful. And I am sad. For the aunts and the many people who loved them. For my neighborhood. For our rabbits.* For my friends who are struggling in various states of isolation. For over half a million COVID-19 deaths here. For I don’t know how many around the world. For the healthy life I thought I would live in middle age. For my darling dog.

I grew up in the foggy Pacific Northwest. There I learned that sometimes it’s okay to drive through fog. But sometimes you are at its ephemeral mercy. You cannot control it. You have to accept its existence and wait for it to dissipate, to let you through. I suppose brain fog is like that. Maybe? Or maybe that’s grief. Or both. A heavy, obscuring blanket of emptiness. Impenetrable, even as you move right through it.

I’m just so sad.

I could use a break. But that’s not how it goes. One has to roll with the punches … adapt in order to survive … yadda yadda. No breaks guaranteed. Fine. In that case, I could use a good house cleaner. Must like dogs!

Black short-faced dog peers out from under bedding encircling her face. — Young Duchess Draymond Pugbelly is all about self-care!

*Appreciation to Rick James and Dave Chappelle! (If you don’t understand that reference, well, I just can’t help you.)

*Autocorrect actually filled in, urinary Tracy infection. Apologies to all Tracy’s out there! Also, DMARD = disease-modifying, anti-rheumatic drug. Do you feel enlightened now? Well, do ya?!

*Descanso, a roadside memorial or marker that commemorates a site where a person died suddenly and unexpectedly.

*In the near future I will write about Bunnytown USA, a 25-year adventure that concluded just before that first lockdown of March 2020.

Excuses, Excuses … Ex-Cue-Says … X Q Sez!

I have not posted anything — nope, not a damn thing — in 3 months. Here are all the WHYs, in no particular order:

Doubt
Depression
Thanksgiving tradition of a visit from my Big Bad Wolf, annual flare of autoimmune disease activity that dwarfs the others, leading me to deny my distress and need for help during those lesser flares, but also …
Prednisone is a hell of a drug!
Fatigue
Brain fog
Broken tooth
The shiva of “Auntie” I
Pandemic everything
Perfectionism
Publishing is the problem. There, I said it. Not writing. Not editing. Finishing. Committing to transferring to this platform — in some cases to typing or {gulp} dictating first — and then I have to end it. Stop myself from writing about the next connection and the next my mind makes. Or discovers. Is it important to distinguish between the two? Is one better than the other? Ha! Define “better.”
Doubt
Fuhteegue!
Say it. I mean, write it. Do it. Own it!
Pain
Foggy brain
PTSD
Post-Traumatic Stress Disorder, Ole Friend variant
Another broken tooth
I almost got through 2020 without going to the ER.* But that’s where I spent 6 hours of Christmas morning. Viral gastroenteritis, turns out. Great news that I didn’t have a certain respiratory virus, but {sigh} I could have been treated better. Trying to follow up with troubling test results, but …
New medical insurance
It’s not “prior authorization” — it’s authorization! You either do it with or without authorization. I have enough trouble with time as it is!
Ok, I have to dedicate more of my loving-kindness meditation to the insurance industry. Obviously.
Doubt
Insurrection Coup Riot totally predictable yet also incredible thing
T died suddenly
MuthaFuhteegue!
I can’t post anything else, until I publish part 3 of Collaborating with My Wolf. And I can’t post that until I finish it. Which I very nearly have. Except that’s only true of the longer version. I could publish the shorter one right now. Except I haven’t been able to do that for over 5 weeks. The other version keeps pulling me toward disclosing my abuse history, or at least part of it, and I don’t know if it’s ok to disclose part and not all at once and that last thought reads as super odd as it feels, but I’ve kept all these secrets for so long, because I’m a good girl, and I don’t know how to spill them without confirming that I am the terrible person that I have secretly thought myself to be most of my life.
It might be ok to publish a post or two while working on part 3. I just can’t make the official launch until I finish and publish part 3.
I now have 4 other posts in Drafts.
Deleted the poetry posts. Formatting disaster. Category 4. Will try again. Promise.
Anxiety. Is that fear + doubt? Feubt? Looks German or French; however, I don’t believe it is either. I could be wrong.
The consistency of split pea soup, it comes on little cat feet and causes my brain to lose track of all the usual routes in its atlas. Wow. Metaphor-maggedon!
Pandemic burnout
Lupus burnout
I just don’t feel good burnout
Despite my best motivational speeches, neither the dishes nor the laundry will “do” themselves!
And now … taxes!

Black wolf-like dog with white fur outlining his muzzle, lies asleep in a tight curl. Watercolor effect to photo — The marvelous schipperke Duke at rest

*Yes, really, it is the Emergency Department — not Room. I do know that. The issue is that nowadays “ED” is most often used for “erectile dysfunction” and most everyone in the US still understands “ER” basically means the same thing as Emergency Department. So, yeah, I am part of the problem.

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