SXSW/festivals and hypermobility by the numbers

April 3, 2016

It isn’t easy managing conditions like Ehlers-Danlos during events and conferences, but it gets easier with time, practice, and patience. Learning how to prepare and pack is crucial. You’ll be out all day, so don’t forget to bring the essentials. (Despite carrying a mini-pharmacy in my bag, the rattling didn’t attract too much attention.)

The tips I have for surviving are simple enough that anyone can keep them in mind-

Drink lots of water. Schedule time for lunch or a snack around noon or don’t, I’m a blog, not your mother. 

Don’t drink on an empty stomach.

Keep your shit together. Wear lace-up boots to hold your ankles in place when they dislocate. Keep salt packets in your pocket in case your blood pressure drops. Keep your pain meds bottled stocked and use it when you need it, and chug water—obvs.



These are my rough recollections from the absolutely insane marathon week+ I spent at this year’s SXSW. The festival spreads across most of downtown Austin and some outlying neighborhoods, so going required quite a bit of stamina. Somehow, I only had to call it in and rest for one of the [X] days I was there, but that was more from the heat and me being stubborn, so I guess it doesn’t REALLY count. But on to the numbers:

miles walked per day: 9ish

flights of stairs climbed per day: 10ish

dislocations during sleep (that I can remember): 3

sub-laxations of joints: 15

bouts of acid reflux : 6

migraines: 2

hours of sleep per night: 5/6 -ish

I got more sleep once film started to wind down but I was pushing myself more and more… and stayed out less than last year as a result. I’m not too bummed—I saw a lot of films, averaging about 2 per day and sometimes more depending on the schedules and traffic (the Obamas being in town made some days a tad tricky). I did end up missing out on a few opening parties and after parties, yeah, that did kinda suck. Overall, I think I took fewer pain meds compared to an average work week but still worked in my evening muscle relaxers most nights, at least on those that I took it easy and didn’t drink.



With a few projects I’ve been working on entering festivals in the coming months I’ll be tested at my little survival tactics again, now I just need to remember to follow my own rules. I’ll be checking in with my electrophysiologist for a device tune up and will update you on the number of PVCs and runs of tachycardia I likely experienced in the last month. Here’s hoping I didn’t break my beats per minute record this time.


Cyborg update: we’re working furiously on the full rough cut of the film and will be entering our FINAL round of fundraising in the coming months.

Additional note: I’m working with a photographer friend of mine (Anastasia Page) on a project exploring invisible illness and the oddness that having Ehlers-Danlos can look like. Here’s a gif from the test photos:




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