Striped Girls Can Jump?

Reminds me of a few people I know!!
<Image Text>: “Your flexibility amazes me. How do you get your foot in your mouth and your head up your ass all at the same time?”

People have the strangest reactions to learning about Ehlers-Danlos Syndrome. So, telling them about it when you are already socially awkward quickly becomes a study in ridiculousness. For instance, I got to have that discussion recently with my hair stylist. It ended with me jumping up onto things alongside the majority of the salon staff. I promise there was no alcohol involved. I just would rather do practically anything – including impromptu social experiments – than make “small talk.”

My stylist knows that I have dysautonomia. I hadn’t exactly planned to tell her, as how does one broach that conversation during “small talk” at a salon, but fainting in her doorway last year kind of forced the choice between sharing the diagnosis or paying whatever the deductible would have been for an ambulance ride when the owner was afraid otherwise I’d die on him – or worse sue him. My old office, before my bully-of-a-boss fired everyone in it and made its lone survivor a fully remote worker, used to have a faulty heater. I had to wear a sweater, an undershirt, and a camisole just to keep from turning blue in that office most of the year. In winter, I’d then add a big heavy waterproof coat, scarf, gloves and hat on top of it to walk the about ten minutes from my office to where I get my hair cut. I learned last winter that just because it is 50 degrees inside your office and about 20 degrees outside, some salons will inexplicably choose to keep their facilities at about 80 degrees. If you walk into one of those salons wearing all those layers, you’ll pass out in the doorway from the dramatic temperature change. At that point, the cat’s out of the bag.

Now I have a cane. And, I use it to go to the salon. It is, once again, twenty degrees outside and still inexplicably about 80 degrees inside. Having my cane for balance seems especially prudent since, in addition to my faulty autonomic nervous system’s desire to pitch me floor-ward, the abrupt thermal change also fogs my glasses and leaves me effectively blind while maneuvering the six stairs to get down from street level to the salon during my period of thermo-non-regulation. I don’t think the owner would call an ambulance a second time, but it’s still good to have a balancing aid for extra reassurance. The official mascot for EDS is the zebra, but I don’t think there is one yet for dysautonomia. I’d like to propose the turtle. We are as unable to regulate our body temperature as a cold-blooded animal, we move slowly, we armor ourselves in protective outer shells – er, compression bodywear – and we spend most of our time horizontal.

Not having a cane and then later having a cane elicits questions. I’ve almost perfected my answer to, “Couldn’t you just take collagen supplements?” That is the usual first question I get upon attempting to explain EDS to someone new. My stylist, however, skipped the usual questions. She didn’t ask about collagen samples or yoga – or make any snickers about how my Partner probably “enjoys” my flexibility – because she’d already asked at least a few of those questions of someone else first. I am, it turns out, one of two (!!) clients of hers that have Ehlers-Danlos Syndrome. The other one had already fielded most of the first-level questions for her, including explaining why collagen supplements don’t work. Thus, I was able to skip immediately to clarifying the one still-open question that remained after zebra client #1 had thoughtfully fielded the first set.

I gather this mysterious zebra now has a fantastic doctor that she sang the praises of to our stylist, but she only obtained her diagnosis after years of first being dismissed and/or misdiagnosed by the rest of her doctors. She seems to have shared her entire diagnosis story. The “years of being dismissed or misdiagnosed” is the part that stuck with me from her story. But, for my stylist, one other detail tiny detail captured her imagination.

Zebra client #1 said that she knew that she’d finally found a doctor that could help her when that doctor watched her hop up onto the exam table and immediately asked, “Have you ever heard of Ehlers-Danlos Syndrome? You jump like someone who has it.” My stylist asked if I jump like a zebra, too. I can honestly say, though, that prior to that secondhand story I hadn’t known that “jumping onto things” was a potential diagnostic feature of EDS at all. I also couldn’t quite mentally imagine what “jumping like someone with EDS” might look like. How many ways are there to jump anyway?

After I failed to resolve my stylist’s lingering curiosity, we moved on to the generic small talk that is the norm during things like haircuts and manicures. Did I ever mention that I hate small talk? So, when my stylist later noted that I didn’t use the step stool to climb into her styling chair – I kind of bounced into it? – I suppose I could (and maybe even should) have politely steered her back to small talk. Running commentary on how I move is a bit outside of the norm for the kinds of conversations one usually has during routine service appointments. But, I’m socially awkward and I have ADHD. Generic small talk is intensely stressful for me. I think I use more spoons trying to keep to ‘polite conversation’ then I do just bouncing up and down on things to satisfy random curiosity.

My stylist theorized that perhaps the tendency to “bounce” instead of “step” up onto things is what that doctor had noted is more common in EDS. This, of course, led to the stylist in the next chair, who had overheard the conversation because the salon isn’t very big, pointing out that far more of her clients bounce into the chair than the statistics I’d given suggested could possibly have Ehlers-Danlos. Thus, maybe it wasn’t just the “bounciness” itself, but the fact that a doctor’s exam table is high enough up that most people can’t bounce onto it at all that matters?

And this is when we realized that I was the last client in the salon and the check-in counter was about the same height as a doctor’s exam table. Thus began our social experiment. I can, in fact, bounce up onto a counter of exam-table height without any need for a step stool. However, so can about 25% of the salon staff. What none of that spry 25 % can do, though, is also lift a leg up high up to place it on the counter and then spring up off of the other leg. EDS: I can lift my leg up as high as my own head to spring onto something, but I can also dislocate an ankle walking down a flat, paved sidewalk. I’m a study in extremes that way.

The contrast between my simultaneous “bounciness” and need to use a cane to not fall over in the hot salon while standing near the counter while the others attempted to complete their own jumps seemed to accomplish what my prior more technical descriptions of EDS have so far failed to do: make non-zebras go, “Wow, that sucks.” I’m not sure if that’s because bouncing on counters is an effective explanation or just a memorable one. It was, at least, a change from the usual blank looks I get when explaining EDS technically. And, I can’t overstate that it also got me out of small talk.

Being a data geek, I was sorely tempted to note that our whole experiment in whether striped girls can jump had been confounded from the start by the fact that I not only have EDS, but I also have ADHD. There is no way to confidently establish from my data as the “EDS” subject whether my “zebra” bounciness was truly the result of EDS fidgetiness, ADHD fidgetiness, or some combination of both. I stayed silent about that glaring experimental design flaw, though, because a) I’ve already shared more of my diagnoses with the employees of that salon than I have with some friends and b) I don’t know if that original zebra would be as willing to provide “control zebra” data at her next appointment. If she has ADHD, too, then her data would be just as contaminated as mine. If she doesn’t have ADHD, she might be as intensely uncomfortable jumping on tables as I am making small talk! I don’t have any clean data to truly support my hypothesis, but I do suspect it’s the ADHD part of me that hates small talk, not the zebra part…

I am somewhat invested in obtaining viable empirical data now, though. How do striped girls jump? Is EDS fidgetiness distinguishable from ADHD fidgetiness? Were we able to figure out what that other zebra was referring to when she said her “jumping” was a signifier of her diagnosis? I went down an embarrassingly long rabbit hole of chronic illness message boards and facebook groups searching for any discussions of “bouncing” or “jumping” onto exam tables being a hint of zebra-ness, but I found nothing. Has any other zebra ever heard of this?

And, while we’re at it, has anyone ever figured out how to make small talk? Because, if I’m honest, that bit about being flexible enough to get a foot in the mouth and a head up the ass at the same time probably applies as much to me making “small talk” as it does to clueless neurotypicals asking about my diagnoses…




Working from home
Image: Brain says to heart, “Now that we work from home, self-discipline is absolutely essential.” Heart, playing video games, replies, “Speak for yourself, dork.” Link to original image here

Did you know that the term procrastination comes almost directly from the Latin procrastinatus?

This is relevant because I have a new blog page on my main site that does not have a Latin title. This pains my Partner deeply. I think it pains my Partner almost as much as typing pains the hands of someone with Ehlers-Danlos!

My Partner pointed out recently that the saga of the 9th Circle of Hell has probably become so complex that any potential new readers will have a hard time figuring out what the heck I’m talking about on a weekly basis. (The bully-in-my-brain, of course, immediately added: “even more so than they would normally have difficulty just in understanding the ramblings of someone with ADHD with pronounced hyperactivity alone.” Thanks for that, brain.) I replied that I actually take great pains to try and link at least the most proximally explanatory blog posts, so readers can catch up if they want.

He then pointed out that that effort probably costs me more in hand cramps trying to back-link enough blog posts each time I write a new one to make my story make sense to new readers – and to those of my readers with brain fog in general – than it would to just maintain a dedicated page. Because he is sensible – and my hands really could use the rest – I followed his advice.

I created a Glossary of Terms this weekend. It should contain all the key descriptions needed to understand my rather topsy-turvy life. My Partner desperately wanted me to call it the Dramatis Personae page – because Latin is awesome – but it turns out that I write a lot more about places than people, with the possible exception of him. I claim it’s because I respect the privacy of others whenever possible. It might also just be that I am socially anxious and don’t have a lot of close in-person friendships…

Either way, I couldn’t justify the Latin page title. And, the effort to create that Glossary of Terms seems to have sapped my creativity to write another blog post this week. I’ve been procrastinating long enough that I now concede that writing a blog post telling readers to read my not-a-blog-post will probably be my only post this week! But, that confession at least does allow me to honor my own and my Partner’s creative styles and kill two birds with one Latin pun title. (I hope my Partner is pleased.)

I think my brain has struggled to write another post this week because it thinks it already has written one. It turns out there are enough “Easter Eggs” in the Glossary of terms – including how I got the pseudonym Lavender, an introduction to the not-horrible therapist whom I keep claiming I will write something about someday, a new Where’s Whoopsie, and even a link to the very first piece on mental illness that I technically ever wrote – to maybe back-justify that I even truly did kind of write an original post. (The aforementioned Easter-Egg article was written on a whim for the same reason I started my blog. It technically was posted on another blog two weeks after I started my own, but I wrote it first and submitting it probably also helped inspire this blog. But, I – in true ADHD fashion – kind of forgot that it existed at all or that at one point I was open to maybe trying to guest post on other blogs eventually. Oh, well. My life is too complicated to need anymore rejection therapy right now.)

Have a look at my Glossary of Terms and hopefully learn something new about me. I’ll write a real post next week, I promise! (Though, at least on the plus side I’ve actually managed to be more productive working from home. Not having to see my bully-of-a-boss on a daily basis at least reduces the amount of time I spend frozen in panic unable to even start a project for fear of him already despising it.)

Houston, We Have a Problem


That problem is, apparently, that I sound like an astronaut communicating through a crinkly 1960s com unit from the Moon – while my space suit springs a slow leak and I rapidly lose oxygen.

Did I ever mention that social anxiety makes absolutely no sense? I may be a bit underconfident when I perform on stage, but I at least can speak in multiple sentences without choking, in either the figurative or the literal sense.

This is not the case with job interviews.

Despite the protracted visit to Hell this month, I did manage to get off a small batch of applications to potential data science positions. This is a reasonable accomplishment, as these applications, even outside of academia, are not short. There’s no simple “slightly modify your resume, change a paragraph of a cover letter” and go. Each one requires references up front, transcripts, lists of published papers, and other odds and ends to create a complete portfolio. Each one has its own specific hoops** to jump through. Some I have seen even want samples of publicly available code on GitHub! We don’t even really use resumes. It’s all C.V.s. Oh, and I’m pretty much mentally broken right now and my typical protective mental walls have been dangerously breached by all the workplace bullying and 9th Circle of Hell full-scale substantiated systemic abuse.

All of those lodestones aside, I was able to complete one stage 1 phone interview. One of the rare legitimate benefits of ADHD is that if you truly enjoy what you do – and I do, just not always the workplace culture that surrounds it – hyperfocus can be harnessed to your favor. You can, for instance, pull off reading everything a lab has published in the past five years, plus review what consulting gigs and patents have been pursued in tandem, the work of their external research partners, and even their potential security of grant and/or venture capital sources. (I’m pretty sure a big part of the systemic breakdown of the current workplace culture is ultimately funding-related self-protective offensive attacks. I’d like some indication I’d be with a more established, stable entity instead of out of the frying pan and into the fire.)

There was nothing about that organization I didn’t know, and I had really carefully thought-out answers for the standard interview questions and what my background could contribute. Those answers were even good!

I managed to answer with great content, but the rushed breathiness of someone who basically was fighting a potential panic attack the entire time. Have you ever noticed how sometimes you can’t take deep breaths to calm anxiety, even if you try? You get physically stuck in a kind of hyperventilation. If I had forced deeper breaths (I briefly experimented while on mute), I risked going into a sort of coughing/retching fit. Being somewhat rushed and breathy – but not dry heaving – seemed better.

So, that sucks. I’m pretty sure in the past I’ve sounded like I speak a mile a minute and likely talked over people (because ADHD), but I at least haven’t sounded like I exhaust myself with my talking. Now, I seem to have the “don’t overwhelm with too much content too quickly” more under control, yet I get no benefit because some form of anxiety + idiotic autonomic nervous system functioning literally starved my brain of oxygen while I spoke! Did I mention I wasn’t actually – at least so I thought – even that anxious? My anxiety over this interview was nothing compared to the traumatic meetings I’ve had recently with the 9th Circle of Hell. My answers were good. I felt confident in them. If I had managed to speak like someone breathing the air around her instead of from deep inside a malfunctioning space suit, I’d even have said I felt pretty confident I’d get a second interview. But, apparently, when giving interviews after a lifetime of Hell, the devil is still in the delivery.

Has anyone else had that experience? You actually feel confident in what you want to say, but your lungs seize up and you can barely draw the breath to say it anyway? Any tips? This is kind of a scary new expression of my anxiety. Everything about my stress responses lately have been new and scary.

** For anyone who is going to suggest that perhaps I could actually make good on my claims about using statistics for social justice by applying to an advocacy organization, I have bad news. 1) There really aren’t a lot of grass-roots mental health or chronic illness groups that employ data geeks. 2) I am, still, a data scientist not a computer engineer by training, so sys admin positions don’t quite fit. 3) The ones that do have openings seem to want you to have already worked in advocacy. I saw one that actually seemed cool, but they explicitly stated their technical staff need to be “camera ready” to give solo press conferences about findings. Because even the data staff need to be PR-savvy, I guess the socially anxious aren’t the target mental illness demographic for mental illness advocacy by default? I still like the idea, but it seems like breaking into the world of making the world a better place is surprisingly complicated?

Improv #9: In-city-cure attachment

I’ve lived in a lot of places in my life. Enough that I’ve only ever stayed put long enough in my adult life to be called for jury duty once, during graduate school. I’ve lived on both coasts and in the middle. I’ve lived in cities I’d go back to in a heartbeat if a job presented itself, and I’ve lived in cities that I ran from as fast as humanly possible.

I’ve said repeatedly that any place I live in that isn’t the 9th Circle of Hell is home, but I’ve also said that home is nowhere. Each city has been a steppingstone. It has been something impermanent to be enjoyed for a few years and moved on from when career or family beckoned ever onward. I’ve never fully believed that I’d ever stay in one place long enough to truly settle down, even as I carefully chose my current city with the stated hope of finally finding a way out of the 9th Circle of Hell for my family situation for good. I look forward to the day in a few years when I can legitimately say I’ve lived away from the 9th Circle of Hell more years than I’ve lived in it, but it would take a very long time to be able to say I’ve lived in any one place longer than I walked the cursed ground of my childhood.

Continue reading “Improv #9: In-city-cure attachment”

Improv* #6: A Meetup Group with Social Anxiety Tries to Walk into a Bar…

How to Make Friends
Source: XKCD

…The bartender says, “We don’t serve folks with social anxiety here.”

The groups shrugs their shoulders and replies, ‘Well, if that diagnosis doesn’t work, how about depression, PTSD or ADHD? We’ve got a few options for what to call ourselves…’

The bartender shrugs, “One of those ought to count. Come on in.”

You probably thought I was going to go with the ending where they all shrugged their shoulders in relief and walked away because they didn’t really want to be in public anyway, didn’t you? Well, I was trying not to be cliché. After all, I tried to go to a meetup group for folks with social anxiety last night. At the time I thought of that joke, it seemed like the obvious ending was just a mental loophole giving me permission to chicken out. Chickening out at the last minute, even mentally, didn’t seem like the best option given I had three hours left to keep myself psyched up to actually go and “be friends at people.”

Continue reading “Improv* #6: A Meetup Group with Social Anxiety Tries to Walk into a Bar…”