What is one question you hate to be asked? Explain.
Have you tried … yoga?
No. Sorry. I am not a judge.
{rimshot}
Have you tried … yoga?
I mean, back in college practically everybody was doing it.
{rimshot}
Have you tried … yoga?
Yoga? Really!? I didn’t know it was edible.
{rimshot}
So, is it sweet or savory? Hmm. Guess it’d have to be sweet, seeing as how so many (modern) Big Time Yogis turn out to be such unsavory characters!
{rimshot}
Seriously, it seems every Big Time Yogi is eventually exposed as corrupt, guilty of multiple counts of fraud, tax evasion, money laundering, sex crimes. Like the Bikram guy. And the Kundalini guy. Aided and abetted by Akal Security and Yogi Tea. Corporations aren’t just people, they’re enablers, too.
{rimjob}
Have you tried … yoga?
As what? Exercise? Spiritual practice? Anti-depressant? Miraculous immune system restorer? Panacea? Whatever will shut me up about my ills already?
{rim around the Rosie}
Have you tried … yoga?
In the words of the late, great Frank “Yoda” Oz, “There is no try, only do!”
{Rosie the Riveting}
Have you tried … yoga?
I’ve practiced a few different styles of yoga, starting when I was a child, learning poses from Lilias on PBS. I can no longer practice the type of yoga I most enjoyed. Most poses are beyond my current abilities. Recently, Downward Facing Dog joined the list.
{riveting run round}
Have you tried … yoga?
Instead of wanting, even expecting basic sympathy and a little understanding from someone like you?
Hey, have you tried … just not giving unsolicited advice? Or shutting the fuck up? Listening? Realizing we’re equal; that you are not my superior now that I am disabled, just as I was not your superior when my earnings, education, and/or abilities/circumstances outshone yours! (In the time before my immune system “turned heel,” that is.)
What about acceptance? Have you tried accepting reality? Not all disease and injury can be prevented. Or fixed. Not all lost ground can be recovered. Healing is a natural response to being hurt or sick. We are ever-changing, our cells rolling over constantly. A persistent state of perfect “wellness” is unnatural and unattainable.
{shot rimmed out}*
For the record, I move as best I can, as often as I can. Below are my two awesome personal trainers, Roo and Draymond.
Have I missed something? (It’s quite possible.) Why in all this discussion of President Biden’s ability, or lack thereof, to win the November election and continue as President for another 4 years beyond that, is no one using the word health? Mainstream media got close last week when asking about frequent visits to the White House by a Parkinson’s expert over the last several months, but otherwise avoided any direct reference to the man’s apparent declining health or the probability that he has a progressive medical condition. Has health become a dirty word, except when preceded by perfect or clean bill of?
Considering how vociferously various White House and Biden peeps have denied that he is being treated for anything more serious than sleep apnea, I guess so.
But why!?
For several months I’ve been wanting to write about Joe Biden’s declining health as evident in his movement. As managing my decidedly imperfect health often eats into my energy reserves, I’ve put off this project, hoping maybe one of my movement analyst colleagues might chime in first. But, as of the now infamous debate almost 3 weeks ago, the very badly kept secret is out. Since then, I have watched and read several opinion pieces questioning Biden’s fitness (as well as his campaign’s openness and media coverage), plus ones by folks who have supported Biden in the past, now strongly urging him to drop out of the race.
Each and every one of them attributes Joe Biden’s difficulties to age. And age alone.
VIDEO 1: 4/11/2022. For 15 seconds, 3:30-3:45, can see President Biden strolling away from Marine One with his familiar gait.
In an opinion piece in the New York Times, George Clooney wrote, “But the one battle [President Biden] cannot win is the fight against time. None of us can.” Wtf, is Biden terminal!? Or do you mean aging is an involuntary fight against time we’re all destined to lose badly!? Dude!
Later, Mr. Clooney wrote,
“Is it fair to point these things out? It has to be. This is about age. Nothing more. But also nothing that can be reversed.” {emphasis mine}
No, George! Bad celebrity! Sit. Listen.
For 20 years I maintained a private practice as a movement therapist, working with patients with movement disorders*1* and other movement challenges. As my fledgling aerial dance company, AirDance New Mexico*2*, began to grow and I started feeling what denial convinced me was small biz burnout, and nothing more, I decided to close my practice and go all in with the nonprofit AirDance. Not 5 years later, the increasingly disabling effects of my recently identified autoimmune and chronic illnesses pressed me to the realization I needed to leave the company. Passing the proverbial torch to those able to meet the demands of the role was best for all.
Yes, it was all very painful, thanks for asking.
February 16, 2023 article in TIME, President Biden received a clean bill of health after his recent physical. “Biden has ‘significant spinal arthritis’ and the impact of a broken foot and neuropathy in his feet that changed how he walks, Dr. O’Connor noted. ‘The President’s gait remains stiff, but has not worsened since last year.’”
Well … no. Just, no.
So, I’ve been on both sides of the equation, so to speak. I’ve been in a situation similar to President Biden’s, albeit far less public and consequential to our democracy. Some supported my early retirement; others … not so much. All agreed my difficulties — what would later be diagnosed as mild cognitive impairments among them — were due to serious health issues. Not age.
I retired due to disability at the age of 54. Nearly 7 years later, I continue to be unable to work. Acceptance is an ever-evolving companion.
VIDEO 2: 6/1/2023. 14 months later/one year ago: Biden shows modest postural and gait changes.
Despite my two decades of professional experience observing people with movement disorders and seeing how diseases such as Parkinson’s change a person’s movement profile — not only as the disease progresses, but also in relation to declining cognitive abilities (when present) — I found my long retirement had eroded much of my confidence. But what I’ve seen in Joe Biden’s movement over the course of his presidency is not healthy aging.
I am not a diagnostician. Even if I were, I could/would not diagnose a neurological disease and/or cognitive deficit/decline from television footage alone. While I do not know the cause — Mr. Biden may not have a diagnosis as yet — and, as always, I could be wrong, my analysis of Biden’s movement profile indicates rising, significant cognitive impairment caused by physical illness.*3* Without getting too technical, for those of us trained to see them, the effects of his medical issue(s) are evident in several aspects of his walk, including the loss of fluidity and rhythm he had 2 years ago; in his held posture; in the disconnectedness of his arms from his torso; his claw-like hands; his disengaged focus and slack facial expression.
President Biden is not well.
I’m truly sorry for Mr. Biden and his family. Having to face a disabling illness so publicly has to make a very difficult situation so much more so. However, embracing denial and/or blaming age instead of discussing health does not serve anyone.
Does it?
VIDEO 3: 2/14/2024. ≈5 months ago: Watch opening 33 seconds with SOUND OFF! Ignore title & rest! (Sorry, best I could find.): OK, now my movement therapist sensibilities are on high alert!
Maybe my neurodivergence is showing, but I just don’t understand why everyone who is anyone insists on addressing Biden’s problems as a matter of (advanced) age, refusing to even use the word health, much less discuss medical issues. I find it very disappointing, being that this could be an excellent opportunity for accurate health information, instead of perpetuating ageist myths. Myths I thought long dispelled. 40 years ago, few had heard of my grandfather’s diagnosis of early-onset Alzheimer’s. 20 years later, it seemed most had. They’d also learned dementia was not caused by aging. We stopped using the word senility. What happened over the last 20 years?
I guess those awareness campaigns accomplished FCK all!🤬
This is an excellent time for the media to highlight the differences between healthy aging and symptoms indicating a disease process is at work. It’s a great time to highlight age as a risk factor and not a cause. To point out that many diseases are associated with “old age” due to advancing age being a leading risk factor for those illnesses.*4* Of course, the media would then have to do a much better job than they’ve collectively done over my lifetime explaining what risk factor does and does not mean for medical conditions.
VIDEO 4: 6/23/2024. First 10 seconds: Whoops, there it is!
Is the problem our society’s overall inability to factually discuss all aspects of health in any appreciable depth, particularly progressive and disabling conditions? How long will we remain content with the (mistaken) notion that all we need to talk about is “prevention”? No, I’m not knocking a healthy diet, regular exercise, avoiding/quitting smoking, and other actions individuals can employ to lower their risk for cancers and other diseases. But lowering risk is not the same as prevention as most people comprehend the word — as a guarantee against disease.
Yeah, no. There are no guarantees regarding health. Your risk is never zero. You are not in control.
(Okay, almost never. Exceptions have to do with not having targeted tissues. For example, if you have no testicular tissue, your risk of testicular cancer is effectively zero. Feel better now?)
Alright, don’t panic! While that may seem quite scary, there is a fabulous upside! Your risk may not be zero, but for the vast majority of Americans pretty much all the really scary stuff and lots of the not-so-scary maladies, it’s not a whole lot higher than that. In other words, your chances of living a long and fairly healthy life, free of progressive and/or terminal disease, dementia too, is very much in your favor. Given you avoid accidents and gun violence. Up to 85. (After 85, the odds kinda even out.)
Riddle me this: If Biden were showing all the same disconcerting signs, but were 20 years younger, would you still be concerned? Or does that relative youth magically allay your fears?
For his sake I hope President Biden will withdraw from the race and attend to his health. For all our sakes, I will be voting for the Democratic nominee for President in November. Because there is no alternative, in my opinion.
I could be wrong.
But everything I’m observing says otherwise.
The great Draymond Pugbelly sees all!
*1* In medical terms, movement disorders are neurological conditions which cause problematic movement, both involuntary and voluntary. Movement Disorders | MedlinePlus
*2* The now award-winning AirDance New Mexico lives on! Please think about donating money to them. Then do it!
*3* In 2020, my neurologist saw the early (earlier) signs of dementia in Joe Biden. I didn’t see it then. I didn’t want to. 4 years later … I tip my hat to the (very) good doctor yet again!
“Your memory often changes as you grow older. But memory loss that disrupts daily life is not a typical part of aging.” Alzheimer’s & Dementia | Alzheimer’s Association “Dementia is not a specific disease. It’s an overall term that describes a group of symptoms. Alzheimer’s disease is a degenerative brain disease and the most common cause of dementia.”
*4* Age is the greatest risk factor for Alzheimer’s and most other causes of dementias. That risk rises steeply after 85. According to the US Alzheimer’s Association, “5% of people age 65 to 74, 13.2% of people age 75 to 84, and 33.4% of people age 85 or older have Alzheimer’s dementia. However, it is important to note that Alzheimer’s dementia is not a normal part of aging, and older age alone is not sufficient to cause Alzheimer’s dementia.”
For the sake of my mental, physical, spiritual, and chronometric health, I am departing the platform formerly known as Twitter. As friends and family know all too well, I am not one for social media. However, the hubs convinced me to join Twitter in April 2019 and I found a couple communities there that sustained me through some very hard times. Those communities are gone; only a few individuals remain. The platform now known as X reeks of musk, a smell I have always found nauseating. Admittedly, I am hypersensitive olfactory-wise. I have nothing to learn from X. But I did learn lots from my stint at Twitter.
◦ BM (Before-Musk), this was the house Black Twitter built.
◦ 140 characters demands pithiness. 280 — not so much.
◦ Piss off the right/wrong people and you’ll pay! BM, you’d know why.
◦ The terms “gatekeeping” and “centering” and “virtue signaling” …
◦ Not pursuing a career in academia was the right decision for me.
◦ Disability Twitter was da bomb, BM! A welcoming place for freaks like me!
◦ White women suck ass, collectively! And not in a good way.
◦ There is an art to the long and cogent yet entertaining thread. Very few have mastered it.
◦ Public shaming is an act of violence.
◦ The modern abolitionist movement is well thought out and constructed. And named. I am for liberty. I am an abolitionist!
◦ I am neurodivergent.
◦ There is no end to the list of problems with white women.
◦ Indigenous people can be seen and heard on the platform, unfiltered, but you do have to actively seek them.
◦ Damn! Yes, I do have a lot of internalized ableism!
◦ It is unwise to assume a fellow Tweeter is from one’s same hemisphere.
◦ Antisemitism is so normalized that this here neurodivergent Jew often didn’t recognize it.
◦ Doom-scrolling is a real compulsion. (Not an addiction.)
◦ Book-burning white nationalists will make strange bedfellows with Black antisemites, Asian transphobes — just about anyone on an individual basis.
◦ There are some honest-to-god atheists a-tweeting!
◦ If you give Twitter access to your photos, you give Twitter access to your photos.
◦ The space between tolerance and acceptance is a chasm.
◦ If it weren’t for cats, dogs, and other critters, our timelines/Twitter feeds might never be cleansed.
◦ I don’t really know what it means to have my timeline cleansed.
◦ Did I mention how much white women suck?
◦ I could say it was nice while it lasted, but nothing about Twitter was ever nice. Informative, misleading, funny, maddening, confusing, supportive, hilarious, irrational, revolutionary, international, hateful, joyful — yes! But ‘twas never nice!
As the Kinks sang, “I’m not like everybody else!” So, no.
As soon as I’m faced with a writing platform, all my brilliant ideas evaporate.
Why yes, I have been away for a good while. And yes, again, I have struggled mightily with how to make a comeback to my odd little blog. I’m fully aware it is a problem I’ve constructed for myself. I love silence and language both. I have a degree in Theater Arts/Dance and while I’m the dancer who speaks, the choreographer who incorporates words, most of my art (and much of my work) to date has been nonverbal.
I recently watched two different versions of Cyrano de Bergerac. Both were wonderful and distinct. Cyrano emphasized devotion and emotion. Cyrano, My Love went to the core of how difficult it is to express our feelings without a layer of protection, some distance — a mask, a messenger, an actor, a poet. That’s my quick take, at least.
Ironically, I can not articulate at this time how the Cyranos helped me better understand my social awkwardness and the role played by my “childhood gift” of being able to quietly entertain myself. Mon panache!
No, there is no theme here; no flow. I’m making my way back to posting. You’re on your own.
Is there a home COVID-19 test for the disabled? You know, one in which a disabled person is no worse for wear after completing all the fine-motor work and has not been brought to tears even once over the eternity it takes to wrangle all the parts while trying to follow the badly laid out instructional insert of this rapid antigen test?
I was once a biochemistry major. And I’ve worked in labs. Big part of why I left science: hated doing dishes.* Also, asthma and animal testing and depression. Plus, I needed to dance. (Dance and asthma is a whole other kettle of fish.) Meanwhile, though it was years ago and not my true calling after all, my lab experience should help me make short work of this rapid antigen test, according to my many-years spouse.
Loveofmylifeguy tested negative!❤️
Draymond will be having major knee surgery February 2nd!
I like counting in German. I like counting; have since I can remember. Started counting in German several years ago when still working but getting sick and external distractions were becoming problematic.
Today I said the word achtzig (“eighty” in German) in my head and aloud, and it sounded wrong to me. Just wrong. Later, it sounded just fine. I’ve experienced this phenomenon a few times. Usually, a migraine ensues. Most embarrassing instance was when a company member came in to rehearsal, fresh from ballet class, ecstatic about fondu and I shot her down, as the word did not sound at all correct to me right then. So very sorry, D!
As I return to a state of being in which I can not only read but also write complete sentences, I have faith I’ll be able to finish my infusion clinic series, among other things. Thank you for reading! I hope you’ll continue to check in.
Speaking of infusion … I am an anomaly! (A medical anomaly you do not want to be!) As you may recall, I was very excited for the upgrade in biologics** last autumn. However, I had a rather serious and unusual reaction to the new drug in October. I will write about it separately. I’m over the worst; still recovering.
“Full recovery” is not going back in time and reclaiming your health just as it was before the accident or surgery or calamity.
Spoiler alert: I had a brain scan in December and no red flags. In fact, no flags of any color. Entirely flag-free. Such a relief!
We seem to live in a time of superlatives. It’s the worst! (Although I’m going for ironic humor with that last statement, in some cases, especially those related to climate change and natural disasters, it’s true.) We’re bombarded with reports of unprecedented this and that. Progress or the road to oblivion? Time will tell. Meanwhile, you can only do your best! And hey, your best is good enough! Great! So my pretty good is, what, untreated cow manure?
I suppose I could sum up the last several years as various adventures in medical diagnoses and care, from traumatic to life-saving and life-affirming, dotted with occasional brushes with death. Surprising, yet spot on in retrospect, is the discovery that I am neurodivergent.
Divergent. Medical anomaly. Zebra.
I am a freak! Hear me quietly roar!
Strata by DÅL|é from an original photograph by Jeff Hartzer
*Undergraduate chemistry students generate a lot of “dirty dishes,” beakers, flasks, etc. Work-study students like me worked out which residue was what and “washed” the glassware in poorly ventilated closets. It was the early 1980s. It was dreadful.
**Very simply put, biologics (biologic pharmaceuticals) are those made from living organisms and/or containing parts thereof (e.g. amoebae, proteins) as opposed to wholly synthesized drugs. Biologics are all the rage in cancer and autoimmune disease treatment, as well as those mRNA vaccines of late, among others. My October surprise (no names will I give) is in a class of biologic drugs called CD20-directed cytolytic antibodies. And now you know.
Part 3 of Sound of Fury is in the final stages. Meanwhile, here’s this.
“So you said, ‘Sorry, but I’m not licking anyone!’”
Their giggles grew into laughter as the receptionist on the phone and the colleague to her right saw my bemused self on the other side of the plexiglas. For 3 years I’ve checked in at the Rheumatology side of this elongated desk* once a month for Infusion with J, the receptionist who just spoke that fabulous line above through her headset. For the last 2.5 years we’ve only seen each other masked. I feel familiar with her voice, eyes, hairstyles, humor.
“Right! I don’t blame you!”
J motioned that she’d be right with me and would explain everything as she said into her headset,
“I mean, sometimes tragedy just can’t be avoided.”
Then she looked at me, then at her colleague, smiled, listened, and … burst out laughing. I enjoyed seeing J in high spirits. She’s always been an honest and efficient part of my team at Rheumatology and I look forward to seeing her. There have been times I’ve approached the desk just after someone has been discourteous to J, if not also disrespectful, and I sense it’s probably for something beyond her control and she’ll wave it off with a Well, I don’t know what he thought I could do about that? or Some people just — or {sigh} and then greets me with a smile.
Sometimes we patients are justified in our anxieties and rages. (That’s no excuse for abuse!**) Sometimes receptionists can not only not be part of the solution, but also contribute to the problem. Especially for a sick person in crisis. These receptionists feel they are gatekeepers for their bosses, the docs, rather more than they are part of the team that serves the patients. A great receptionist like J knows how to balance the two interests with aplomb. In most cases. Can’t please everybody, of course.
Falling Up by DÅL|é
Change is afoot! I had high hopes for this anti-lupus drug I’ve been infusing monthly for 3 years now. I’ve had high hopes for treatments in the 4 years before that. But … We gave it time. More than we planned, should it fail to elicit the desired results. Next up, while also a biologic, is a considerable step up in immune system wrangling, designed to aggressively address all 3 of my autoimmune diseases. Sort of. Close enough for government work! as my Uncle Tom used to say.
My rheumatologist, Dr. K, and I were first thwarted by covid19. Then by organ damage/cancer scares. (Benign!)*** Then Dr. K got sick.
Soon after the start of 2022, I heard Dr. K had just gone on indefinite medical leave. Rumors and dates of her return came and went. Finally, in late July, I saw Dr. T, who joined the practice a year ago, I think. He’s “young” and exuberant and pretty excited about my rare disease and somewhat unusual autoimmune disease profile. I like the geeks, as long as they’re caring as well, which he seems to be. Good thing, as Dr. T told me he is now my rheumatologist, as Dr. K is officially not coming back.
So, it’s serious. I truly wish the best for Dr. K. I’ve missed seeing her these last several months. I so hope this decision and what follows work out in the best possible way for her!
From Word Porn
Dr. T also claimed he read through my chart prior to my appointment (Wow!) and that he was going to start work on getting insurance to approve the biologic no. 2, the one Dr. K and I discussed. Promising. Scary. With a very different infusion schedule.
I was already scheduled to receive my monthly infusion the following week. Good thing, too, considering my insurance took a full month to give the ok. It appears my memorable check-in with J marks my last infusion of my first biologic!
Speaking of which … J explained that the person on the line had rescued two tiny kittens. Despite rescuer’s best efforts, one kitten died. Rescuer was relaying to J info/advice received from Humane Society expert, who pointed out (more than once, apparently) that mama cats lick the anuses of their young to stimulate bowel movement and keep it all clean down there. Thus, prompting the protestation against licking anyone. And the wholehearted agreement of same sentiment by our lovely J.
I’m right there with them! Maybe a warm towelette?
I’m so grateful that I’ve had these years with Dr. K! After that last infusion I cried about not being able to take this next step with her, as planned. I’m truly thankful I can take it now with a new doctor and the same support team I’ve come to know and trust. Even though they’re not licking anyone! Not even to save a fragile life!
One of my many very fine ducks, courtesy of ClusterDuck!!
September has become a difficult month for me, with occasions to dwell on the passing of a few loved ones. But this has been the second extraordinary August in a row! Last year’s was all about the most stressful business property sale we could have never imagined, intermixed with adopting a marvelous puppy (Roo!) with a nasty parasitic infection after a beloved dog (Duke!) died at the end of July.
Today, 25 August 2022, is the first anniversary of closing. Out of business, we are. Have been.
This month began with a week of migraines. One day I bent at the waist to get a bottle of water out of the fridge and was overcome with excruciating pain. For the next two weeks I was in varying degrees of debilitating and immobilizing pain and muscle spasms. Then I returned to my normal level of chronic pain, fatigue, etc. I can move! Cook dinner! Think! (With caveats you understand.) Halle-freaking-Berry-lu-jah!
And now the migraines are back, because —? But second biologic approved/authorized and now awaiting scheduling and then maybe wait a few months to make effectiveness known …
Meanwhile, don’t expect my team at rheumatology to lick anyone. They’re very good and professional. They have their limits. Good to maintain boundaries!
Our little Roogele at ≈ 8-9 weeks of age. (Plus Draymond’s backside!)
*Rheumatology shares a long reception desk area with the Pain and Spine Clinic, which makes sense, or would, if they actually coordinated care, but they don’t. The receptionists make good use of their shared space, though.
**😇🐮! That rhymes! But also, prednisone can be an excuse for abuse. Another in my growing list of topics I mean to write about here sometime in the future. But when? I ain’t got no idea!
***I would not make you hunt for benign v malignant cancer determination in the footnotes! Who do you think I am? I will make you wait through much of 2021 and 2022 while I go through the whole process without telling anyone a thing about it, though. Yes, that I will do.
My Good Wolf 