Day 258. EDS Documentary

I couldn’t say this better.

simple and well

I can’t wait until this comes out. At that point I might even “come out” as an EDS sufferer to my community at large!

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8 thoughts on “Day 258. EDS Documentary

  1. WOW, that is great she’s talking about it, making a documentary, really breaking it down for us not so aware of EDS and its hardships. Thanks for sharing.

    • Oh, isn’t it just? It takes another person with an “invisible” disability to notice that. I worry about that all the time when I park in handicapped parking. I keep meaning to do a whole blog post about it (maybe we all should!). For example, if I park in a HP spot on a day when my limp doesn’t show up, I feel as though I ought to exaggerate it, maybe, so the old lady who had to park two spots further away doesn’t wonder why some young whippersnapper comes bounding out of her car–not that I ever bound–but you get the idea. Or, watch Judge Judy (who I love), but the way she talks to people on disability confuses me: “What do you mean you went on vacation? You went on vacation and you can’t hold down a job? Yeah, RIGHT!” Whenever I roll my eyes at the shady characters in sympathy…I think, wait a minute, she could easily hold the same suspicions of me. It’s very hard to measure a disability unless you’re the one living inside the body.

      • That reminds me of a bus ride I took many years ago with my brother somewhere on Staten Island, New York, where we have a lot of relatives. He was about 14 years old, and I was a few years older. We were sitting next to each other on the bus when an elderly woman got on. She was stooped, and had a cane, and was moving slowly. The bus was packed, and she walked right over to us, stopped in front of my brother, and proceeded to fix him with a glinty-eyed stare. She didn’t say anything, but her message was pretty clear. My brother looked like a perfectly fit and strong young man, and he mostly was, but he also had hemophilia, an inherited bleeding disorder that runs in our family, and I knew that he was experiencing a bleed that day in his ankle. We were actually hurrying back to my aunt’s house so that he could rest his ankle and take some medicine. So I got up and the old lady sat down, right next to my brother, from which close quarters she gave him the evil eye all the way to our stop. Of course, if I had gotten up right away, the whole thing would’ve been different. It’s kind of exhausting, the way you have to always consider the other person’s side of things. What’s that expression: Be kind–for everyone you meet is carrying a great burden?

        As for Judge Judy, I love her too, but I wouldn’t exactly call her fair. She seems to just like some people and dislike others. One of my students left class after telling me that he was going to appear on her show. When he returned, he wouldn’t talk about it except to say it was “pretty humiliating.” Naturally, I’ve always wanted to see that episode, but no luck.

      • Jennie–I love both of these stories. The one about your brother is so wonderful, really vindicating. I am sorry you both had to suffer through such discomfort. Love the JJ story too! I would have forced a play-by-bplay from the student, though, purely for my own enjoyment. But then I’d be a little too much like the lady staring daggers, I guess…


  2. This is exactly what I love about YouTube and social networking. When it comes to “orphan” conditions, such as this one, there’d be almost no chance of someone like me even hearing about it, let alone getting a first-hand account from someone living with it. And for someone like you, what would be the chances of connecting to others with EDS, if not for the Internet?

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