Open Society

Hopefully you’ve heard of “The Trifecta” by now – that is, the relatively common trio of issues we find comorbid in the Ehlers-Danlos community of any form of EDS (or the newly recognized, less visible or well known diagnosis of Hypermobility Spectrum Disorders since March 2017) plus Mast Cell Diseases (now, MCDs) in any form (whether forms of Mastocytosis or Mast Cell Activation Syndrome or HaTS) and finally Dysautonomia which all have to some degree. Many hypermobile patients will have the specific subset known as POTS.

Everyone I meet with EDS seems to either be on or at least related or even married to an autistic person. Or alternatively experiences ADHD I’ve since realized (updated 2021).

Conversely, since befriending several autistics and autistic cousins in the local autistic support groups in past years, I found the reverse to be true as well: almost all showed signs of bendiness (hypermobility) to varying degrees, and complained of many of the same health issues I’ve had all my life including heavy allergies or at least sensitivities among other things. (Autoimmune diseases, fibro, IBS, more.) This is turning into one heck of a coincidence in my book and I’m dying to see a study correlating hypermobility and autism. Dr. Theoharis Theoharides has correlated autism with the highly comorbid Mast Cell Actviation Diseases since 2013 though meanwhile. Edited to add in September 2021: there are increasing numbers of studies showing this correlation you can find on my Autism Resources page now. I also find the following neuro-divergent and psychiatric constellation really common in our group as well, on the spectrum or not: anxiety, depression, ADD/ADHD, OCD, SPD, PTSD, mixed mood disorders, Bipolar, Borderline Personality Disorder, Narcissistic Personality Disorder and any and all variations thereupon you can find. Dual diagnosis anyone? Try “Hexa diagnosis” in some. And no, I’m not kidding, they’ve voluntarily shared their diagnoses with me in some cases even without my asking. We really must stop trying so hard to classify people into single boxes with our short sighted views; further, I’ve personally observed people’s conditions and mental health and neurology to change over time – and diagnoses to change or resolve, frankly. Yes I speak from experience in at least one case. Of course, we are often quite loathe to admit to any of this not only from the social stigma all too sadly attached to having mental illness or neurodivergence of any kind despite how common it truly is, but because way too many of our doctors proceed to write off all of our very real pain and physiological issues to “just anxiety” or depression, sadly.

Cognitive dissonance surfaces whenever human emotional limits are reached. The catch is that those humans who are capable of considering themselves to be culturally well adjusted have a capacity for maintaining cognitive dissonance that seems nearly unlimited from an Autistic perspective.

As pointed out in earlier articles, the discipline of economics and the modern belief in the invisible hand are best understood as the foundational beliefs of a cult. More and more people are reaching this conclusion.

I’ve loved so much of the art, culture, criticism and reporting that I’ve seen from marginalized people in the past several years, and I’m terrified that a lot of it could be buried in this tidal wave of hate. We’re really going to need all of those stories and creations to hold onto, during the dark times to come. We’ll keep producing great art and culture no matter what, but we’ll still want to hold on to the proof of what we can accomplish when the “mainstream” culture industry gives us access to resources. And there are so many obscure, little-noticed, indie projects from the past several years that we’re going to want to revisit. This has been a fertile time, and we need to save as much of these riches as we can. The good news? There’s something you can do to help. You can become a citizen archivist.

I didn’t know until years later that Prince did the same damn thing. Prince had epilepsy, too. Prince got freaky as survival strategy. In 2009, he talked about his epilepsy publicly for the first time on PBS with Tavis Smiley. “From that point on,” he said, “I’ve been having to deal with a lot of things, getting teased a lot in school. And early in my career I tried to compensate by being as flashy as I could and as noisy as I could.” Prince was a walking disability poetics. After that, when I listened to his music, I thought: Prince has a Sparkle Brain.

Sparkle Brain. My term for my Epileptic, Bipolar, Chiarian, PTSD-brain–for any neurodivergent brain. Sparkle Brain is big tent. Autistic brains are sparkly. Psychogenic Non-Epileptic Seizure brains are sparkly. Sensory disordered brains are sparkly. Neurodiversity in all its forms is sparkly. I mean sparkle literally: my brain is extra electric. When my brain lights up, it sparkles like it’s 1999. But I mean it figuratively, too: sparkly, like a disco ball. A Sparkle Brain is shiny. A Sparkle Brain is beautiful. Sparkle Brain is my fuck you to neurologists who only see me as broken. My fuck you to editors who want me to cut epilepsy out of my writing because they don’t think it’s relevant, they don’t think it sells, they don’t think it’s sexy. My fuck you to neurotypicals who think I need to be fixed. Sparkle Brain is Disability Poetics.

An experience that WordPress trainer Gloria and I are having together, because we realized how Gutenberg somehow has the same logic as the programs used by the blind, to interact with computers. I almost feel like I’m playing with toy bricks, then Gifter with his working eyes tells me if something has gone wrong and Gloria helps me put it right in case of need. All in all, the universal and accessible web is there, the WordPress community is proving it to me day by day, and I am glad to be an active part of it.

The danger is clear and present: COVID isn’t merely a respiratory illness; it’s a multi-dimensional threat impacting brain function, attacking almost all of the body’s organs, producing elevated risks of all kinds, and weakening our ability to fight off other diseases. Reinfections are thought to produce cumulative risks, and Long COVID is on the rise. Unfortunately, Long COVID is now being considered a long-term chronic illness — something many people will never fully recover from.