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.
*by which I mean I, though also you
I’ve written before about the experience of being someone who never expected to find the one thing for which I was willing to knock everything else right off the table, and then finding that thing.
I am (as a matter of course) talking about ballet.
When you’re in that position, it’s easy to forget that not everything works that way.
I am (as rather less a matter of course) talking about aerials, but also about Ehlers-Danlos.
Sometimes, Making Decisions Gets Complicated.
Recently, I decided to try training seriously on rope (as opposed to just occasionally hopping on the rope and being like, “This is fun” and then not doing it again for 4 years). I love watching rope, and it’s a great apparatus for strong, bendy people, so of course it seemed like it might be a good thing to add to my toolbox.
It took only a few weeks to realize that I was … well, not exactly wrong, but not exactly right, either.
Because, as it turns out, rope is a great fit for my strength and flexibility and a terrible fit for the connective tissue disorder that is the source of my flexibility.
The form of Ehlers-Danlos I have is mild—perhaps not as mild as it gets, but the Ehlers-Danlos spectrum includes flavors that are much harder to live with than mine. Because of that, I sometimes forget that my entire body, as D recently put it, “…is always just on the edge of blistering.”
I mean. We all remember that time I went to a modern SI and my foot blistered under its callus all the way down through several layers of skin, right?
(If you don’t, there’s a pic of the partly-healed blister here CW: ratchet-a** blister pic. I don’t actually think it’s that gruesome, especially not compared to when it first happened … but since several people I know disagree with me about that, consider yourself warned? ^-^’)
Anyway! So, yeah. EDS makes my body respond weirdly to friction and pressure.
And rope is all about that friction and pressure.
Horrible, Unavoidable Blisters Are A Good Reason Not To Do Something, Right?
It didn’t take long to figure out that rope training gives me weird, super-hard, glass-like calluses on my hands … or that the tissue under those calluses then blisters and sloughs, leaving behind raw, blazingly painful ulcers that take for-freaking-ever to heal.
Or that trying to do anything with giant sloughed-off blisters right over the distal ends of your metacarpals is … difficult.
So THAT happened.
Perhaps unsurprisingly, after attempting to get through rope class using a combination of Neosporin Plus, blister bandages, cloth tape, and self-adhesive bandages, I decided to take a couple weeks off of rope, let my hands heal, and think about what to do.
Like, even I am together enough to figure out that I needed to seriously think about whether rope was, in fact, a good fit for me.
Like, yes: it’s cool and I love watching rope performers, but was it worth literally flaying my hands on the regs?
And if I opted out, did that make me, like…
[ G A S P ]
This Is Where You Phone A Friend.
Or, well. If you’re me, you either slide into their DMs or just talk to them in person at the gym, bc actual phone calls??? LMAOOOOOOO. Who even does that? That’s not even what phones are for.
- Yes, I’m making fun of myself. Kind of. But also, that ISN’T what phones are for, or at least not my phone, as evidenced by the fact that it’s absolutely terrible at voice calls. I’m also absolutely terrible at voice calls, so it works out.
Anyway, long story short, last week I finally got around to asking my friend, mentor, and hoop instructor ABM, who has pretty much the same version of EDS that I have, if she does rope, and if so how it plays with her EDS.
- Is a combination friend-and-mentor a “frentor?” Or is that more like someone who’s a friend, but also a bull?
- EDS is a rare disorder unless you’re a dancer, aerialist, or contortionist, in which case sometimes it feels like half the planet has it.
It turns out that she doesn’t, largely because it doesn’t play well with her EDS.
When she does rope, AEB gets the same weird, glassy calluses that I get. They inevitably blister underneath and slough just like mine do. She also said it makes her body hurt in ways that other apparatus don’t, which is consistent with my experience as well. (In my case, I had assumed that more training would fix that, but maybe it wouldn’t.)
ABM is also a super boss-level badass.
So this, in turn, made me feel more okay with the idea of not continuing to pursue rope.
Practically speaking, I’ve pretty much put the question to bed. I haven’t gone to rope class since my glassy calluses tore off. I’m not planning to go to rope class.
And yet my brain still finds it difficult to accept that. I hate being told that I can’t do something, even when I’m the one telling myself that I can’t.
Bargaining Is One Of The Stages Of Grief.
- Which are non-linear, and may be visited numerous times. I think of them as trains: you can ride them more than once, and sometimes you’re on a train that at this moment is operating on both the Denial and Anger lines, for example, which might run concurrently in one place but not another. Like trains, they can also take you to places good, bad, and indifferent, and sometimes even to destinations you didn’t expect.
Figuring out that, realistically and practically, you can’t do a thing you’d like to do is a kind of grief.
So is facing down the fact that, no matter what your Russian-born gymnastics coach told you, sometimes there really is such a thing as can’t, or at least such a thing as, I could, but it would be a spectacularly bad idea on levels that I probably shouldn’t ignore.
And so, when I find myself in this position, inevitably I go through this whole mental wrangling process.
Like, I deny that there’s a problem. I give you full permission to laugh at this right now, in this context, because Y’ALL. Me denying that my skin sloughing off is a problem is like:
I get mad: maybe at myself, maybe at the world. I bargain with myself: “Okay, so I can’t do it in its default state, but can I maybe modify it somehow???”
And I do this, I think, partly because I really actually want to Do The Thing, but also partly because I need to know that I haven’t given up prematurely. Only, when it’s something that I want to do, my brain considers giving up at any point to be premature, and reverts to You Just Don’t Want It Enough mode.
Which Is A Problem.
While there might be ways I could work around the blistering thing, it really seems as if there probably isn’t one. At least, nothing short of inventing a modified version of the apparatus (which involves an R&D budget that I don’t have, because I can’t afford to pay an engineer rn).
Normal skin calluses, but doesn’t then blister under the callus. For those of us whose skin does do the thing, most dance contexts, allow shoes or dance socks or whatevs, and they prevent the whole problem. Artistic gymnastics and some circus disciplines allow “grips” that covered the parts of the hands that are most prone to EDS callus madness and tears (the rippy kind, not the kind that stream from your eyes as you attempt to pick up your coffee pot with your poor, ulcerated hands).
- I mean, assume there are circumstances in which this could happen to normal skin, but for me it’s the norm in some contexts.
- There are modern companies wherein it’s barefoot or nothing. I will probably never work for any of them, because I respect that as an artistic decision and just don’t even audition. I’m going out on a limb to say that it’s also a bit on the ableist side, but That’s Another Post.
Rope isn’t dance or gymnastics, though, and it has some unique constraints. I don’t think grips, or anything else I’ve dreamed up, would actually solve the problem. Like, seriously, I’ve been lying in bed and thought, “Maybe I could stick that moleskin stuff on my hands???” but … no. Freals. There are about a million reasons that probably wouldn’t work.
If I had slightly bigger hands, and could wrap them all the way around the rope, that might make a all the difference for me. But I don’t, and the diameter of the rope used in aerials is pretty much standardized.
Being able to wrap your hands all the way around the rope lets you take some of the pressure off of the distal ends of the metacarpals–I can do that on trapeze, silks, hammock, and sling, and while it doesn’t always prevent the whole glassy callus-blister-slough sequence, it does most of the time.
That’s good enough. I can work with most of the time, especially since when it does happen on trap or things other than rope, it’s typically because I’m doing something wrong.
On rope, though, even when I’m doing things right, I frequently have to grip the rope in a way that transfers a ton of pressure to the distal ends of my metacarpals. Result: the whole glassy callus-blister-slough sequence (and a couple weeks of wrestling with simple tasks like buckling a seatbelt, driving, or pulling up the covers in bed).
Even if I had bigger hands, though, the surface texture of the apparatus that I’m lazily calling “rope,” which is actually corde lisse, might still be a problem.
Corde lisse translates to “smooth rope,” and it is smooth–in a sense.
You can’t see or feel the twist of the rope fibers. This isn’t the rope you climb in gym class, which is visibly a rope, but something that looks more like the “velvet rope” barriers one encounters at museum exhibits and performance venues.
It’s a kind of long textile sausage. (It is not, however, velvety.)
Wikipedia describes corde lisse as being made of “soft cotton.” This also is true in a sense.
Une corde lisse has a layer of padding between the steel cable that forms its core and its sausage casing, so in that sense it’s softer than just, say, climbing a naked length of aircraft cable.
Likewise, the heavy-duty canvas duck that forms the sausage casing is made of cotton, in that the cotton itself was presumably soft at some point in its life cycle. But that cotton is then transmogrified into the fabric generally known as “heavy-duty canvas duck” and associated with such words and phrases as “tough,” “stiff,” and “military duffel.”
It is not, in fact, actually sandpaper. It feels soft if you gently stroke it, like you might stroke the belly of a cat sleeping in a sunbeam.
But if you use the boniest bits of the palms of your hands to apply intense pressure to a long sausage cased in heavy canvas duck, “soft” isn’t the first word that comes to mind. Like the cat, who was only feigning sleep and did NOT invite you to disturb their recharge sesh, it has bite.
So, basically, for a handful (pun intended) of reasons, rope probably isn’t ever going to actually be my jam, no matter how much I want it to be.
The challenge is feeling like that’s okay.
You Really Don’t Have To Do Everything. Really.
This is where the idea of being fair to myself comes in.
Like, I try to do this thing in which I try to convince myself that it really is okay by playing out a hypothetical situation in which someone else comes to me about a similar problem. It goes like this:
I really like rope, but I’m not sure I can keep doing it because it does bad things to my body. I feel like I should stop, but I also feel weird about it. Like, in gymnastics, the coaches never let us use the word “can’t,” and *shrug* … you know what I mean?
I totally get it! I think you’re making the right decision, actually. You only get one body, so it’s good to listen to it and take care of it! Besides–you do trapeze, hoop, hammock, acro, and adagio, which is a LOT, and you’re doing the right thing to take care of your body so you can keep doing amazing stuff with it.
I’ve had these conversations in real life. Lots of them. And when I’m talking to someone else, I mean it.
Like, I’ll straight-up tell you if I think you’re being a big weenie. I mean, depending on the context, I’ll probably do it in a less-insulting way, like saying, “I know you can get that plank tighter! You’re strong!” or whatever–but still.
- Also, can we all stop for a sec and appreciate the delightful oxymoron implicit in the phrase “big weenie,” since “weenie” is used, in other contexts, as an adjective meaning very small? And also that as a derivative of “weiner,” AKA PENIS, PENIS, PEEEE-NISSSSS, it’s for once not insulting to age groups, non-male genitals, non-male persons, any particular ethnic group, people with disabilities, etc?
Sometimes deciding not to do a thing is how we take care of the beautiful instruments that are our bodies. And taking care of the instruments that are our bodies is essential.
The only way I can stop being mad at myself about this kind of thing is to be like, “Yo, you need your hands for PARTNERING, which is your basically YOUR ENTIRE JOB, and also girls won’t like it if they’re all covered in hard, stabby stuff.”
- D, at any rate, doesn’t seem to mind, though maybe he would if I was partnering him in pirouettes on pointe.
And That Isn’t Even The Point.
Look … I’d be lying if I said I didn’t think there’s great value in the kind of quiet toughness and resilience that training in aerials or gymnastics or ballet, at its best, builds in us.
It’s good to try to overcome obstacles whenever they stand between us and something important or something we really want.
But you know what?
It’s also good to be able to say, without deriding ones’ self as an inadequate little panty-waist, “Actually, I don’t really need a world-beating reason to not do this thing.”
- Apparently, a “panty-waist” was originally an undergarment generally associated with babies–like a shorty union suit. TBH, that sounds like a pretty useful thing. #TheMoreYouKnow
It is okay to want to do a thing, and to try the thing, and to discover that maybe it just doesn’t jam your jelly or whatever. Or that it would jam your jelly, but instead it jellies your distal metacarpals, and that isn’t going to work.
So maybe you change your mind, and decide that the thing in question isn’t for you, at least not right now. And that’s fine.
Changing your mind doesn’t “make you a quitter.” It gives you room and time and energy to not quit all the things you do keep doing.
I do think that I have a good reason for deciding not to continue with rope training.
But it’s not the only good reason, and it would be good if someday I learned that sometimes you don’t even really need a good reason to say, “I think I’ll skip x thing.” That you–I–don’t really need any reason at all except that’s the decision you–I–have made.
Has writing this post moved that needle for me?
I don’t know. I’ve noticed that sometimes we need other people to help us move needles like that. And time. We need time, too.
So even if this doesn’t help move my needle, maybe it’ll help move someone else’s.