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  • Writer's pictureKathleen Burnard

Hello World

Since I stopped performing a few years ago, this site has been sitting here, lonely and unattended, like a [I don't know, insert clever simile here, I'm tired]. So for this May EDS and HSD Awareness Month, I thought I'd try something a little bit different. In addition to having some brief-ish social media posts for The EDS Society's Social Media Challenge, I'll also be attempting to keep up a blog here on this page responding to the given prompts. Last year I found myself editing paragraphs out of my posts or writing three different posts in a day just to scratch the surface of the topics I wanted to get into (how do you write a short instagram post on medical racism? clearly I need guidance, because it was a struggle). The idea is that I'll be able to do a summary over on Instagram and then a more in-depth discussion of the day's topic over here.


Will it work? Who knows! It'll be an experiment for us all. Here's the thing- I'm currently working with an unknown vision/neurological...thing(?) that's making it difficult to interact with screens for very long. Or really do anything that involves focusing my eyes for very long, but especially if there's any light or contrast involved. So I might get a few days in and realize it just isn't going to work. Hopefully that won't happen. Or maybe this'll become a more regular part of my life. We'll find out together. Onto today's prompt.



Day 1: Meet Me

A close-up of Kathleen with a closed mouth half smile at the camera. Her hair is bright purple, just shorter than chin length, and curly. her dress is royal blue with tigers printed on it. She's wearing a small RBG collar necklace. And in the background there is a light yellow flow curtain to her left and the edge of a mirror to her right.

Hi, friends. In case you somehow got here without knowing me or you missed my name plastered all over this site, I'm Kathleen. I have hypermobile Ehlers-Danlos syndrome. Some of my other current diagnoses include, severe asthma, occipital neuralgia, essential tremor, Mast Cell Activation Disorder, orthostatic hypotension, and Postural Orthostatic Tachycardia Syndrome. I have a baking blog called The Spoon Variable that's geared toward other people with disabilities, chronic illnesses, and dietary restrictions, I live in Southern California but spent the bulk of my life right outside of Washington, DC, I love cats, I do a lot of puzzles, and I have a very hard time picking a "favorite" anything. For the rest of the month you can look forward to reading about what EDS and HSD are, the impact EDS has on my life personally, some of the people who support me the most, and I guess just anything I feel like shoving in front of your eyeballs. I can feel the power already. Just kidding. Mostly. Get excited.

The EDS Society's Social Media Challenge 2022 topics listed by day


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