Category Archives: ehlers-danlos
Make that catch-up.
I know, I know. Terrible pun. I’m genuinely sorry, and yet I know I’ll just do it again. Such is the nature of puns.
Okay, so I’ve basically been incognito for two months. November and December are, erm, a little busy in the ballet world and we had a bunch of house projects that became urgently important (and thus got done, but also ate up my unscheduled time).
Then I caught COVID (spoiler alert: thank G-d for vaccines & boosters) and, even after recovering, wasn’t sure what to say about it.
So! Let’s get that one out of the way first.
I can only assume, based on the timeline, that I probably caught COVID while on our miniature tour. Given the timing, the fact that we performed without masks only to later find out the audience was also unmasked, and the fact that almost nobody in the town where we performed seemed to wear masks anywhere at all (and that my masks are all the protect-other-people kind that do little to protect the wearer), it’s deeply probable.
- “We” being a group of vaccinated dancers (with the exception of a few who were too young) and very careful about masking. As far as I know, the decision to have us dance unmasked came down to our artistic staff being given the impression that the audience would be masked, because they’ve been extremely careful throughout the pandemic.
That said, it’s hard to say with certainty, because even though I still basically wear a mask whenever I’m around people who aren’t in my pandemic pod, I don’t usually wear an N95 or KN95 mask. Initially, that was because supplies of those were limited for quite a while and people working in healthcare really need them; more recently, it’s been partly because I already own about a million ordinary masks, because I’m mostly around other people who wear masks, and because N95s are an absolute beast to dance in.
As a result, I could’ve picked up the virus literally anywhere, since enormous numbers of Kentuckians, particularly outside of Louisville and Lexington, simply won’t wear masks.
Anyway, because I teach students in the K-12 bracket (who, until recently, weren’t eligible for vaccination) and because as someone with asthma and a history of serious respiratory illness I’m at higher risk of severe complications of COVID-19, I got both initial vaccine doses pretty early and received my booster the day I left for the beginning of our Nutcracker run.
It’s impossible, of course, to say how things would’ve played out if I wasn’t vaccinated, but given my risk profile and medical history (I’ve had pneumonia five hecking times, y’all–my lungs don’t play), it’s pretty likely that the outcome would’ve been poor.
Instead, I had:
- a fever for two day or so
- the worst sinus headache I’ve ever had (which is saying something, because fren, I’ve had some wicked sinus headaches in my time)
- sore throat (though not as bad as the worst strep I’ve ever had, which, to be fair, I totally allowed to get out of control)
- scabs inside my nose (next to the headache, this was the most miserable thing–blowing my nose was horribly painful for a bit)
- more than the usual post-nasal drip which occasionally made me cough
- two days with no appetite
- a near-complete loss of the ability to taste or smell anything but salt (that happened first, oddly enough, and persisted the longest except for some lingering fatigue, which I’d expect after any significant illness)
Oh, and I basically slept for a solid week, which was great, since it meant I basically only experienced the rest of the symptoms in brief snatches, including that truly egregious headache.
I spent a few extra days in bed with pretty intense fatigue, and then one day I experienced the familiar sensation of being bored as heck and unable to lie down for even thirty more seconds and knew I was going to be fine.
You’ll notice that I didn’t mention any lower-respiratory symptoms at all. In fact, as miserable as it was (at least when I was awake, anyway), and as much as it made me miss the rest of our Nutcracker run, my case of COVID-19 would be classified as mild-to-moderate. I emphasize that because, frankly, I think a lot of people don’t understand that basically, no matter how miserable you feel, if it doesn’t send you to the hospital, your COVID-19 isn’t severe.
Not to say that it’s not serious–especially given the potential for Long COVID and its unknowns, and the fact that a couple weeks out of work can decimate a family’s finances–but it can be much, much worse, and that’s a really important point when we’re talking about vaccine efficacy with regard to an illness that can easily kill young, healthy people and that is killing people at staggering rates.
I did take a ton of meds, all of them over-the-counter except for benzonatate, which is a prescription medication that kills the urge to cough. That was important for me since post-nasal drop and/or throat irritation can kick off coughing jags that in turn kick off an inflammation cascade that leads, at minimum, to severe asthma attacks, but which has in numerous instances created a fast track-to-pneumonia situation for me (did I mention that my lungs don’t play?).
I wasn’t willing to take that risk when a simple telehealth appointment could prevent it.
At this point, I’m mostly back to normal: I can make it through a pretty decent ballet class (even with a mask), though I still get tired more easily than usual.
Compared to the average sedentary person, I’m back to being hella fit, though I’m definitely not back to typical mid-season professional dancer fitness.
My best metric is sleep: at typical mid-season fitness level, even after six to eight hours of class and rehearsal, plus whatever happens in the evening, it takes me a couple of hours to fall asleep when I go to bed. Right now, one class and some housework makes me tired enough that it’s a struggle to read for half an hour (which, a bit foolishly, I keep doing because I’m afraid I won’t be able to fall asleep ^-^’).
My second-best metric is fatigue. The form of EDS I have does this weird fatigue thing: I can work my way up to professional-dancer stamina incrementally, but if I seriously overdo it, I get hit with a wave of literally debilitating fatigue and have to spend a day or two in bed. Right now, the threshold for that response is way lower than usual.
But, still, overall? I feel like I dodged a bullet thanks to medical science and Dolly Parton.
- Simply by chance, I wound up getting the Moderna booster even though my first two doses were Pfizer–I think that was a good thing, too, since anecdotal accounts suggest that particular combination is a little more effective in preventing serious COVID-19 illness.
So, in short, I’m not mad that I got vaxxed and still got sick.
Rather, I’m glad the vaccine did its job and curtailed the severity and, probably, the duration of the illness.
While I really didn’t mind not being able to smell the catbox even while cleaning it, I’m happy to report that I’ve mostly regained my senses. I lost an somewhat alarming amount of weight as a result of just not being interested in food.
- Which isn’t to say I’ve become sensible–let’s not be hasty, here!
- I want to write about how this intersected with the part of my brain that still lives in Anorexia World, but I think that might need its own post. Suffice it to say that a significant part of me was far from alarmed about the weight loss, and has been struggling with regaining any of it, and I’ve realized I need to do some work, there.
That was a fairly bizarre experience, to be honest. Because I actually did completely lose my appetite for a couple of days, I discovered that, for me anyway, there’s a major difference between being unable to eat and just … not being interested in eating, but being at least somewhat able to eat if I could find something that wasn’t too salty (as much as I like salt, when it’s literally the only thing you can taste, a lot of things are suddenly too salty).
Like, normally, I try to eat with a kind of relaxed mindfulness–actually giving attention to the experience of eating, but also to participating in conversations and being aware of what’s going on around me in general. I had no idea how important the ability to taste was to me, in that process.
When I couldn’t taste my food, actually eating enough was really hard.
First, my interest in food pretty much evaporated, and since I’m bad at recognizing hunger signals until they get really intense, I kept forgetting to eat.
Second, actually finishing even a fairly small meal required pretty intense concentration, because if I got distracted, I just wouldn’t come back to my food. I wouldn’t have predicted that.
Also, there’s a specific kind of cognitive dissonance involved in possessing a powerful sense memory of the taste of spiced chai, but being utterly unable to taste it in real life o.O’
I’ve since gained back what I assume is most of the weight I lost, though I haven’t been weighing myself because I’m apparently constitutionally unable to remember to put new batteries in our scale
At any rate, I no longer have to crank my belt way down to keep my trousers on.
So that’s my experience with COVID thus far (could’ve been worse, but still: 0/10, do not recommend).
In other news, it’s National Choreography Month again, and I’m actually managing to keep up to some extent, so here’s my response to Prompt 2, Master Work, in which one re-creates an iconic dance pic:
I’ll have more Nachmo stuff coming.
Til then, keep dancing.
I’m writing this mostly as a reminder to myself, since managing widgets on an Android device is kind of a PITA and I’m not in front of my laptop right now.
Anyway! I’m planning to add three resource widgets: one with resources for autistic peeps, one for ADHD peeps, and one for Ehlers-Danlos info.
Each will include links to websites I’ve found really helpful, and that I hope might be helpful to anyone else who’s trying to navigate that neurodiverse lyfe or that bendy, poppy, sometimes dysautonomic lyfe.
I thought about lumping the ASD & ADHD resources into one “Neurodiversity Resources” widget, but A] that could turn into one hella long list and B] breaking them out into two separate widgets might be useful for anyone who’s looking for one topic or the other specifically. Also, I find it deeply satisfying to sort things into categories, because autism.
That said, there is often a lot of overlap between ADHD and ASD, and I hope y’all will feel free to explore any resource that sounds like it might be useful.
ASD is also more common in people with EDS than in the general population, which is both fascinating in terms of research potential and a huge relief to people like me who have spent our entire lives wondering if we’re really just gigantic hypochondriacs (even though EDS is diagnosed by objective physical criteria and we chime right along with the diagnostic profiles for ASD & ADHD and have carried both diagnoses for most of our lives).
I’ll also add a Resource Room page—that way, folks can find the resource lists in an uncluttered context.
Lastly, because I’m a nerd who likes to review things and who recently received the gift of a Costco membership, I think I’m going to try doing a wee video series reviewing stuff I’ve stumbled upon at my Costco that has proven really useful in my life as a neurodiverse dancer currently struggling with the scheduling chaos related to the ongoing pandemic. SPOILER ALERT: it’s mostly gonna be food.
- Autocorrupt suggested, “…ongoing Patricia.” Patricia, I don’t know you, but apparently Autocorrupt thinks that you’re the one sowing chaos in my daily life 😱 Don’t worry, though—Autocorrupt is almost always wrong. Almost always. But if it is you, can you take it down a notch, please? 😅😅😅
Once upon a time, when I was eight years old, I received my very first violin—and with it, an introduction to the care of sensitive musical instruments: tune gently, handle with care, be careful of drastic changes in temperature and humidity.
Most of us, even if we don’t explicitly know these things, can intuit them from experiences with things like doors that stick when the humidity is high or swing loosely when it’s low. As such, nobody in their right mind would chastise a concert violinist for deciding not to play a Stradivarius in the rain.
Apparently, however, there’s been something of a fracas over the decision that gymnast extraordinaire Simone Biles made to bow out at the Olympics this year (2021, if you’re visiting from the future ^.-).
Many people, it seems, found it very difficult to understand why she might do such a thing, and hurled all manner of invective at her. Biles handled the situation with the same power, grace, and aplomb she displays on the mats.
What her detractors didn’t (and don’t) understand is that Biles’ decision was one that would, for any gymnast, require an immense—even an immeasurable—strength of character. A thousand times more so on the world stage that the Olympics represent.
Because gymnasts, on the whole, grow up in a world that teaches them that there’s no such word as “can’t,” and that winners never quit.
From the first moment budding gymnasts step onto the mat, they’re subjected to a long-standing culture of incredible physical and mental toughness and self-sacrifice. You don’t become even an entry-level competitive gymnast without learning to “tough it out” and “walk it off,” never mind the kind of powerhouse competitor that Biles has become.
To some extent, this is necessary. Gymnastics, like ballet, is hard. It’s tiring and sometimes uncomfortable and demands that an aspiring athlete must learn to reach for deeper reserves of strength than many or even most people living typical, comfortable lives in the developed world can imagine. (Edit: come to think of it, people who’ve given birth prolly get it 🤔)
However, for much of its history, gymnastics training has demanded this in excess, and the result has been injury (and its long-term consequences), careers cut short, and all too often the inability of both gymnasts and coaches to see the body’s breaking point coming until it’s too late. (If this sounds like the ballet world, by the way, it should. Dancers face the same pressures from a similarly young typical age at entry.)
Those of us who have trained seriously in gymnastics understand this. We know what it is to bounce up off the floor after what observers might regards as a terrifying fall and jump right back in without stopping to make sure we’re okay. We know what it is to feel uncertain about whether an injury can withstand the pressure of training or competition and step onto the mats anyway.
We know how very, very effing hard it is, after a lifetime of being told, “Get up; shake it off; you’ve got this,” to say, “You know what? No. I’m staying down and I don’t have this right now, thanks.”
Simone Biles knows her body. She knows her mind. And the fortitude it took to stand before the entire world and say, in essence,”No, I’m not okay to do this right now and I’m not going to take the risk” … That’s a fortitude that a lot of people, to be honest, can’t even imagine.
In short, Biles simply refused to break out her Stradivarius in a hurricane. The fact that the hurricane was an invisible one is irrelevant.
To say, “Biles refused to break out her Stradivarius in 90% humidity” might be more accurate, but it might also be harder for people to understand. So we’ll stick with the hurricane analogy.
Gymnasts, hockey players, dancers, bike racers, aerialists, and many other athletes understand implicitly how very tough Biles had to be to do that.
We also understand that her decision was, whether she thought of it this way or not in the moment, a stand for all the young athletes growing up in athletic cultures in which it’s considered anathema to say, “No.”
In my own life, I’ve injured myself by pushing through things I shouldn’t have, extended the time to full rehabilitation by pushing too hard too soon, and on some occasions avoided serious injury solely by a combination of pure dumb luck with excellent reflexes and an unusually elastic body.
I could’ve avoided most of these things simply by learning, earlier in my life, that there really is a point at which you can and should say, “No.”
My generation grew up with coaches who, as young gymnasts themselves, were inspired by Nadia Comaneci’s endurance under harrowing conditions and Mary Lou Retton’s maxim, “Follow your dreams.”
Those stories bear so much merit—but I can’t explain how much it meant to me, and what a wave of … relief? release? liberation? … broke through me when I heard (through DisabilityTwitter!) about Biles’ decision. I mean I literally, physically felt it—like something exploding deep in my chest, but in the best possible way.
Like the moment when you see someone you love crash their bike hard, and you think, Oh f**K, they’re a goner, but then they get up and look around and kind of dust themselves off, and your heart just goes BOOM because, frankly, you’re so relieved. Or like the first moment in your life you realize that you really, really trust someone.
As an artist-athlete and teacher of artist-athletes, somehow it was Simone Biles that really crystallized for me the idea that, yes—you can say, “I’m not taking my Stradivarius out in the rain.”
I’ve been saying those words for a long time now, but a part of me had a hard time believing them when it came to my own instrument. I could believe them for my students, but not for myself, and that meant I wasn’t always living those words, whether for my students or for myself.
Simone Biles made that idea real for me.
Going forward, of course, negotiating that reality in the world of ballet, where sometimes you’re the only guy and without you the pas de deux isn’t gonna happen, will be another thing entirely. But it always is. Action can’t be divorced from context like that, yo.
Chances are that I’m still going to have to explain, once in a while, why I chose to break out my instrument in the midst of a downpour. I pray that in those moments I’ll be granted the wisdom and grace to do so with clarity, but human beings are imperfect and maybe I won’t, and that’s part of life, too.
You might be wondering what this has to do with Ehlers-Danlos.
Well, two things.
First, from what I understand, Simone Biles also has hypermobile-type EDS and her decision was at least partly based on an episode of “the Twisties,” aka proprioceptive dysfunction.
Proprioceptive dysfunction is a feature of EDS—one that can be really hard for people without EDS to understand, especially where elite athletes and dancers are concerned. It’s understandably hard for them to imagine how you can be someone who’s at the top of the world (or at least, pretty darned good) in a sport or artform that depends on exceptional spatial and body awareness and also be someone whose proprioceptive faculties just … go on strike sometimes.
And yet, that’s how it is. Sometimes the right matrix of stressors makes things go extra haywire, and the systems that allow us to fly through the air with the greatest of ease just plotz. And, trust me, neither you nor we need us flying through the air when that happens.
Second, my excessive sweatiness is very probably also related to EDS—it’s part of the suite of dysautonomic features that come with the package, so to speak—as are my orthostatic hypotension/POTS, episodes of (literally) staggering fatigue, sometimes-weird relationship to hunger and thirst signals, and possibly my tendency to dump salt in my sweat.
So, on Saturday, these conspired to create a situation in which I rocked up to the gym for a doubles coaching session on the apparatus we’ve nicknamed “the rodeo lyra” (bc that mofo will throw you like a bronc if you don’t pay attention) already feeling spacey and fatigued and missed the first mount with the apparatus hung so low I could’ve just forward-folded onto it, lmao (in point of fact, the mount we’re using is harder on a lower apparatus, but not so much harder that I, who literally never miss a mount, would have just completely failed at it if things weren’t decidedly pear-shaped from the word go).
It’s pretty hilarious in retrospect, of course, but at the time scared the hell out of D, who’s my partner in this piece. He’s well aware that I never miss mounts, and because the mount in question results in us facing away from each-other upside-down, he couldn’t see me. His own nervous system decided that the only possible explanation for the fact that my weight wasn’t balancing his was that I had either fallen and broken my neck or was strangling in the span-sets above the hoop o_O””’
I decided (with a little help from ABM, our kind and intrepid coach) to reschedule and go home to take care of whatever the heck was going on with my body (in case you’re wondering, it was what they call “chronic hyponatremia”—the kind you get when your electrolyte levels drop below a certain point over the course of a few days).
Anyway, while I was apologizing to everyone and trying to be okay with that decision, ABM said to me, “You know what we’re calling that now? We’re saying, ‘You Simoned it.'”
As in, you made the right call—you saw that storm coming and put your instrument away.
And I hecking love that.
PS: I got a bunch of rest, sucked down a bunch of noodles with salty broth (and spinach and chicken), and felt like myself again on Sunday. I opted out of morning modern and ballet classes bc I wasn’t sure my electrolyte levels were up to that kind of sweating yet, but was able to get through a slowish-paced lyra class and a rehearsal session on the rodeo lyra.
That’s why you Simone it: because sometimes the best way to get up and kill it tomorrow is to lie the hecking heck down and drink salty, salty broth today.
PPS: I’m working on addressing the dietary imbalances that led to this situation, so hopefully it won’t happen again any time soon. Basically, the past two weeks were unreasonably hot, and there were several days that I forgot to add electrolyte powder to my water but still sweated buckets of salty, salty sweat.
Saturday morning, I had an outdoor performance gig, and although the heat wasn’t as intense as it’s been, I still sweated like a firehose, as I do, and apparently that was the last straw, bc I was a glassy-eyed zombie by 1 PM when our coaching session was scheduled.
One of the joys of hyponatremia will be familiar to endurance athletes who’ve faced the dreaded “Bonk:” your body just … refuses. In the case of the classic Bonk, it’s typically attributed to the depletion of glycogen stores without sufficient carbohydrate replacement, but depletion of electrolytes yields the same basic result (as opposed to extreme over-hydration, which can lead to rapid swelling of the brain, coma, and death before you quite grasp what’s going on o_o).
It’s like someone cranks the power to your muscles way, way down. That’s how I missed my mount. My brain sent the signals to execute the movement, and my body just kind of didn’t.
It tried, bless its heart, because my body is (as I’m learning to understand) a miraculous beast like one of those fantastic, sweet, patient draught horses who will try with everything in themselves to do whatever you ask of them and will almost always succeed. My friend and teacher Killer B recently summed this up by enthusiastically replying, “… Which can do everything!” when I said, “It’s so good to take class with someone who understands my body.”
But in this case, while the conscious motor controls were sending out the plan for “pullover mount to straddle balance,” the unconscious ones were trying to take care of the body by down-regulating the wattage so I wouldn’t waste any more electrolytes doing athletic stuff and possibly die, and/or there just wasn’t enough sodium left for electrical signaling to be that efficient.
Either way, the immediate result was muscles that wouldn’t fire with enough power to bring me over the bar from a standing position. Instead, I got a powerful lesson in really listening to my body.
This isn’t hyperbole, btw. There is no muscling through that specific experience. You can try all you like, but you’re really no longer the one in primary control of the ship. Until you experience that sensation (and I suspect that in our sodium-enriched and largely sedentary culture, most never will), it’s very difficult—maybe even impossible—to imagine.
Fwiw, as an experience, I don’t recommend it. Like, 2/10, and it only gets the 2 bc hecking heck, does it ever teach you some things. But they’re things you can learn without taking all the way to that extreme, and it’s No Fun At All, as the delightfully hedonistuc elves used to say as they died in whatever magical-realm civ-building game of yore that was.
GIF credits: all via Tenor via WP.