Life as an Extreme Sport

Snapshots in Chronic Pain

It’s been two hours. I hurt from sitting up straight without anything supporting my back. My face feels tired from smiling and forced cheer. The paper of the exam table feels like sandpaper against the back of my knees, and I lost feeling in my hands after they asked me to squeeze and press and push and squeeze again, for some indeterminate test of muscle strength, when the problem is my nerves. My medication history is nil at the moment; it’s been years since I’ve had anything prescribed to control the pain, and they know this. They’ve explained that they also cannot and will not ever prescribe pain medication for me–I’ll have to find a willing primary care physician. That’s deflating; why am I here? They hand me a cup to piss in on my way out the door. No pain medication, hours of going over my history, and I

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A Shift in Expectation of Self

I really like this post on body policing, and in particular, how people seem to feel qualified to tell someone with a chronic illness that if they just did X – largely either adopt some quack routine or exercise – that all their problems would go away. In particular, I really liked this: You’d never run a marathon with pneumonia, but a man with CFS needs to, because expending all that additional energy will make his problems go away? You hear someone say that their life is awful. You hear them say that they’re in pain. You hear them talk about the medications, the doctor’s appointments, the flare-ups, the feeling of never being able to escape. You hear these things and you say “laziness”, but it never occurs to you that your own illnesses- a cold, the flu- make everyday tasks difficult- difficult enough that, quite often, you will complain

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Life in a UHaul

I drove out of one state, through another, and into the new state I’ll be calling home today. The entire way down, I was aware of all of my possessions, my entire home, ‘on my back’ behind me (well, in the UHaul I was sitting in). It was a somewhat eerie and odd feeling; the last four times I’ve moved, I either wasn’t driving the UHaul (on my cross-country move), or they were in-town moves where I just used my car. And the last time I did use a UHaul – a decade ago – it was before I returned to academia, and I had few books. The process of loading the UHaul was interesting. It’s very neat and organized and orderly in the very front (Grandma’s Attic/ part closest to the cab) of the truck, but by the back of the truck, you can see that a combination of

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The Invisible Made Visible

While I have never been terribly quiet in discussing my disability, I also acknowledge that I am, for a disabled person, in a privileged class. I can “pass” as normal – that is, I don’t look outwardly disabled. There are a host of issues that come with this, including a lack of “validity” from both normals and disabled folks. (I don’t look “sick”, so how can I be “sick”? Comes from both sides of the aisle.) But, problems aside, I fully acknowledge that it is nice to go out in public and not have the public gaze focused on me. Been there, done that, definitely didn’t like it. Which is what makes this so strange I haven’t been visibly identified as disabled in a long time. When I fly, for various reasons, I normally fly United, and I pay for the upgrade that allows me extra leg room and space.

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