Tag: life
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The Light: Lessons from a Year with EDS
(image of sunlight shining through trees) A year ago this week I was told the answer to the questions I have been asking my entire life. A year ago this week, my mother found out why she had a floppy baby, and that she was right all along. A year ago this week, I was…
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working/living/surviving
There is a myth that persists among the nondisabled community about disabled people. The myth is that we are lazy. I know that some of my relatives think that being disabled means you essentially sit around all day and do whatever you want and get paid for it. In truth, I would trade my life…
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Life Day/Days of Awe
(image of white ocean waves crashing over some rocks) This fall, I learned a new term. I learned that spinal cord injury survivors have what is called their ‘Life Day’, the day of the accident which did not kill them. When they, through a combination of medical care, their own physiology and their own good…
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Accessibility, Invitations, and Why I’m Not There
(black and white image of the international symbol of accessibility) I don’t suppose you know where I am right now. Well, obviously, the answer is that I am in front of my computer writing this, but as it happens the more important question tonight is where I am not. I am not at my uncle’s…
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In Which The Government Simultaneously Tries to Kill Me and Keep Me Alive
(image of a giant Sequoia tree.) So I almost died this summer. Or at least, I came closer to dying than I ever have before. It was very unpleasant. I don’t recommend it. Here’s what happened. I had been having a worsening stomach ache all day. Not nausea. It just felt like somebody was punching…
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The Things They Don’t Tell You: Part One
(black and white image of an old fashioned key lying on a piece of printed something) I don’t know how you do it, someone said to me the other day. The truth is that I don’t either. All I know is that I get up in the morning and I swallow the pills, I…
I Know This Rose Will Open 