Fun and Games with Transcription and Closed Captioning

I really like both my voicemail transcription service and closed captioning (and subtitles) for a number of reasons. But the errors are sometimes quite … amusing, shall we say. Mistakes are in bold and correction in parentheses. Comments in italics.

Hi Debra it is Mona with confusion … (Infusion)

Hi Debra it is Mom with infusion … (Mona)

Put those first two together and that’s our relationship the last couple years of her life.

Hello this is Boss Kane mental health … (Bosque – pronounced boss-kay)

So, security answer = Rosebud?

Hi Debra this is Naomi calling from project with office … (Pacheco’s)

Ok, so my transcription AI is maybe just a little bit racist?

Andrew seven digit call back code is 347-15 to 6 Inc. you goodbye (And your) (3471526) (Thank you)

This took more brain power to work out than I care to admit!

… can connect you to a trained and Roman specialist who can help find a plan that your knees… (enrollment) (that fits your needs)

That last one may be my favorite so far. It is quite possible my knees do, in fact, require a “trained and Roman” specialist!

Stephen Colbert show captioning on YouTube app: “You’re all sharing the same spats and the same air” (space)

Trevor Noah show captioning on YouTube app: “We’re a mosque” (Wear a mask.) Really?!

Amber Ruffin show captioning on Peacock app: “… but because of KROOIFRSZ I’m not allowed to have an audience” (coronavirus) Seriously!?!

Seriously! I paused and took a screenshot to be sure to get the spelling right. Ms. Ruffin did not slur that word — no how, no way. No way, no how.

Young panda cub lies belly down on table , looking at camera/viewer
I did not keep that Amber Ruffin captioning screenshot, because I need to save space for important mental health supporting images such as the panda cub cuteness, provided courtesy of the Smithsonian National Zoo!
Young panda cub, lying belly down on table, seen from the back. See soles of hind paws and round, fluffy butt.
The end!

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.

How to Get Through the Weekend without Pain Pills — in 21 uneasy steps

Preface: My former health insurance up and quit as of 31 December. My new insurance needs prior authorizations (PAs) with detailed histories (and possibly small animal sacrifices) before covering some of the meds I’ve been taking for years, including pain meds. (Yup, opioids. Ever controlled in a way that punishes legal users while not addressing the true source of the crisis, opioids.)

The need for a PA is only generated when one tries to fill the prescription. One can’t fill such a scrip early and is suspect if has more than a few leftover pills. But, one may get a 7-day “credit” of pills against the month’s supply, which then voids the prescription. So, when the PA goes through, one needs a new scrip for the remaining 3 weeks. And, if it takes more than 7 days for PA/approval? Well then, you is shit outta luck!*

The Steps, according to Underlying Conditions Lady:

1. Ration your remaining pain pills for maximum ineffectiveness.

2. Think hopeful and liver-affirming thoughts while swallowing extra-strength generic acetaminophen/paracetamol.

3. Try not to feel like a loser as “dat dumb drug dat was poisoned, ja?” — as your German aunt referred to Tylenol — does little more than reduce your lupus fever and aches a little.

4. Distract yourself with NBA basketball, podcasts, and passing thoughts of fire bombing FDA headquarters.

5. Play with the dog until everything hurts too much.

6. Go ahead and have an edible. Medical marijuana is legal in New Mexico and you have consumables. Lemon-lime-flavored, weedy gummies* and dark chocolate with a ganja aftertaste. Yum, right?

7. Try to enjoy being high for several hours. Stretch. Do bed yoga. Fall into a deep and dreamless sleep, which does, in fact, help.

8. Make a comprehensive list of all the drugs you’ve tried over the years for your multiple forms of chronic pain, and how they failed you — or you failed yourself — so that now you take opioids, because, of course, you are a loser.

9. Cuddle in bed with the dogs.

10. Play a game on your phone. Try to ignore the tinnitus. Fail at that, but win the game.

11. Nod off while playing a game or three on your tablet.

12. Toss and turn, while trying to not disturb the husband or, more importantly, the dogs, and wonder why the fuck your leg won’t stop jumping around.

13. Embrace your identity as a total loser as you take a low-dose gabapentin from your dog’s stash. Think: This should take the edge off the nerve pain. But just one pill, lest I lose my ever-loving mind. (Not an exaggeration.)

14. Do a guided meditation by way of an app on your phone. Observe your mind wander to thoughts of insurance — not very complimentary thoughts. And to the nurse who said you were “not a very squeaky wheel.” And to the fellow patient at your rheumatologist’s office who giddily declared his pain level was 0!

15. Zero? Zero! Schweine Hund! Arschloch! ¡Pendejo! You can not remember the last time your pain level was below 3! WTF?!

16. Breathe! Remember that you’re working on radical self-love, which means not using dehumanizing language, among other things. But … Fuck it! You hate the goddamn pain scale. And all this prior authorization shite. Also, reactionary and ineffective FDA policy. But mostly now not being able to sleep.

17. Eventually, you decide to make a gratitude entry in your journal and that helps a bit.

18. Next day you go ahead and take the nsaid meloxicam and cross your fingers that your stomach can take it. Maybe take one of your man’s omeprazoles. Or not really, as that’s illegal. And you don’t actually cross your fingers, but you do worry, because that’s just as useless.

19. Just go ahead and have another edible. Maybe you can read a short story or two before you nod off. (Current library loan, Ayiti by Roxane Gay!) Hey, maybe you’ll feel creative and write something. No pressure.

20. Realize you don’t have the strength to launch fireballs at the FDA; hence, you’d need to hire a catapult operator. Wonder what that might cost.

21. Recognize that you have taken a break from your loving-kindness practice, temporarily, in lieu of other meditation foci — and it shows! Give it a shot while stoned, because, why not? Direct it at yourself. It is possible that you may not, in fact, be a total loser.

Face of black dog with pointy ears, round forehead, and loving eyes.
The one of a kind presence that was Princess Holly Bollywood, she of many nicknames and much adorable ridiculousness.

*As opioids can be a little to very constipating, this may be literal for many patients.

*I still pronounce these rubbery treats as goo-mees, as did my German aunt for the 35 years I knew her, all in the USA. Never been a fan of anything gummy — worms, bears, etc. But I’ll readily take them over sweet-ass marzipan! I’m a freak!

Who Do You Think You Are? About Imposter Syndrome and The Fails

There are many things I quite love about the Millennials. I’m on the Boomer/GenX cusp myself: technically a Boomer, but I feel more early GenX. Of course, I’ve done my duty and complained about and cajoled the younger generation for this and that, but really, truly, the kids are all right. Among many other things, I’m grateful they have brought the term Imposter Syndrome into the larger national conversation about mental health and well-being.

According to this well-researched Wikipedia article, Imposter Syndrome, coined in 1978 after a study of high-achieving women,* is a “psychological pattern in which an individual doubts their skills, talents or accomplishments and has a persistent internalized fear of being exposed as a ‘fraud’.”

According to many of us in the chronic illness and disability communities, a type of Imposter Syndrome affects us’ns* as well, in which we doubt our level of authority about our bodies. We may doubt and downplay our symptoms or even withhold relief, even as we outwardly strive for recognition, respect, equitable care, and basic accommodations. Especially vulnerable to this type of Imposter Syndrome are those of us with so-called invisible illnesses and disabilities who have been dismissed and whose presentations have been diminished by various persons over the years. Many have been treated as if they themselves are invisible.

Yes! I am not alone! I mean, I guess I should be upset that there are so many of us who have been mistreated and denied and now have to wrestle with doubts and fears about what we know to be true — and I am — yet it’s also such a relief to know I am not the only one. Not by a long shot.

Despite the visible changes to my body, various test results, a long list of diagnoses, and statements from friends attesting to the effects of my diseases they’ve witnessed, I still have times when I fear someone — myself included — will expose me as a lazy-ass faker. I never wanted lupus and yet I knew on some level that I had some type of the enigmatic disease long before diagnosis. Along the way, a few people said, “No way you have that!” What if they were right? What if I’m really manifesting and/or exaggerating symptoms? Or both? Which symptoms? How do I …

This sort of internal battle is not a good fight. For me it’s a product of societal pressures and notions about the worth of being healthy and productive; a combination of disparagement, mistreatment, gaslighting, and denial of illness and resulting disability in childhood; entrenched ableism in much of the alternative health and wellness community;* and the bad doctoring I endured the last several years. Not to mention all those people whose response to hearing I’m sick was, “But you look really good.” (Except I did just mention them now, didn’t I?)

I have been struggling mightily with this here blog.

What am I doing? No one needs another blog. I don’t know what I’m talking about. I’m not sick enough to be interesting. I’m too sick to figure this out. There have to be other people doing this way better than I. I can’t do this. No one cares. No one will like it. Oh crap, what if people do like it? I can’t do this. I don’t know what this is. I haven’t carefully planned it out. Is this even the format I want? I should start over.

And the beat down goes on.

I had a major episode of The Fails the week before Christmas. According to Debapedia,* The Fails is a state of mind in which the afflicted is convinced they have failed everyone in their sphere of influence in ways that are utterly despicable, because … well, because they failed. Duh. It’s related to perfectionism, but it’s so much more than that. The feeling of worthlessness, of having let everyone down and having no way to rectify it feels bone-marrow-deep. Of course the kicker is that often there is no evidence to support this claim to failure and few if anyone else sees any failure at all — and certainly not irreparable fiasco.

Like Imposter Syndrome, The Fails only makes sense to the person feeling it at the time. Both mental phenomena are rooted in fear — that one doesn’t measure up, has less worth than others, doesn’t deserve praise or respect. And for me at least, shame plays a significant role as well. And then one ridiculous notion dovetails into the next. I’m a fraud — I’m not really that sick — so why can’t I get these things done? — because I’m worthless and I ruin everything, including my health.

The solution? To my knowledge, lasting change takes committed work with the usual suspects: psychotherapy and/or support group(s); a solid support network (including healthcare providers, ideally); journaling and/or artistic modalities that aid in addressing negative self-image and deprecating thoughts; meditation or another centering and affirming practice; adequate nutrition and sleep; whatever movement you can and do enjoy.

I also heartily recommend Sonya Renee Taylor’s course of radical self-love, as laid out in her book, The Body Is Not an Apology. I’ve been (re-)reading this wonderful, radical, next to impossible book for over a year now, loving and struggling with the seemingly simple exercises. Among other offerings, daily affirmations delivered free of charge are available on the TBINAA website.

In the short run, here are some things that have helped me: crying; laughing; breathing exercises; playing with the dogs; listing, saying aloud all supposed Fails and hearing how bizarre, even laughable they sound; listing or sometimes arranging evidence, documents supporting accomplishments and/or illness and disability and directly contradicting the concept of repeat failures. Music. Sketching. Gratitude.

One of my accomplishments during this year of Underlying Conditions Lady in pandemic lockdown is that I have read a great many books! Mostly ebooks and audiobooks borrowed from my local library. Hurray for public libraries! Recently, I checked out a book of essays by Audre Lorde and the following quotes stood out as a shield against feeling like a fraud or a failure. I leave you with Audre Loree’s wisdom.

“For we have been socialized to respect fear more than our own needs for language and definition. And while we wait in silence for that final luxury of fearlessness, the wait of that silence will choke us. For it is not difference which immobilizes us, but silence. And there are so many silences to be broken.”

Audre Lorde, “For there are no new ideas, there are only new ways of making them felt.”

Head of large rabbit with floppy ears lookung content at being held in by human. (Person largely unseen.)
Tig the Notorious of Bunnytown USA. He was the rare bunny in both looks and in liking being held and cuddled.

*The phenomenon is not exclusive to women, by the way. I just think it’s mighty interesting that it was first observed in high- achieving women. We see you Dr. Jill Biden!

*Pronounced just like it’s spelld.

*I will write more about all that stuff in the future, especially regarding the anti-disability prejudice of some “wellness” thought and practice. Keep your outrage on simmer until then.

*Debapedia is my mate’s favorite reference tool, far and above Siri and The Goog. Debapedia is affected by occasional dense fog, which obscures information access. Rest assured, if it’s in there, the Deb read it somewhere at some time. Or heard it and wrote it down. In a notebook. Or my journal. Maybe the back of an envelope. Or could be in the cloud … somewhere … over the rainbow?

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.)