Bring on the Chronic (Pain)

06/16/2011

Wake up to my alarm, the irritating cell phone boogie. Everything is stiff and my face feels kind of swollen like I’ve been crying in my sleep again. Have I? Hope not. My sinuses are swollen but it’s probably just the dregs of that cold, summer-spring allergies, dust.

The neighbors woke me up like they usually do, just as I was getting to sleep, so I slept downstairs with my housemate/sweetheart. I think: I love living in a neighborhood with 24/7 streetlife because it makes it feel safer, but I hate living in a neighborhood with 24/7 streetlife because it makes it loud when I want it quiet. I think: do these people have jobs? If they do, they obviously are not jobs like mine (that require early mornings and early nights). Then I think: I live in a neighborhood that is predominantly people of color, and people of color are experiencing unemployment at a significantly higher rate than the “general” (this is the word the news uses, why?) aka “white” population. I am glad to hear them laughing, whatever the case.

These are the things I am thinking as I hobble up the stairs, trying to go easy on my bad hip. Most people don’t know that I’m sick. I don’t like telling them. But I have noticed a pattern to my friendships lately, that the people I am closest to are also people with chronic ailments or long-term injuries or mental illness diagnoses or trauma or (more likely) some combination of this thing. I sometimes think that truly able-bodied, well-adjusted, 100% healthy people free of trauma or other long-term injuries are a myth, that each of us (our bodies, our selves) have these individual quirks that make us us, and sometimes make living in our bodies all the time a challenge.

I have this weird pseudo-privilege of looking well, appearing well, being well–except for when I’m not. I look socially acceptable: slender, tan but not readily apparent as a person of mixed race, etc. Okay, I’m not gender-conforming, but in my city that is still pretty normal and because I’m “pretty” people tend to overlook that. I’m lucky to have this amount of body privilege, and I know that.

But. Looking well doesn’t mean I am well, which leads to problems in various places: the bus, the doctor’s office, friendships, work. My mother has had this problem her whole life, so I shouldn’t be surprised, but it took me a long time to figure out why she had had so much trouble getting a diagnosis, or getting people around her to acknowledge her illnesses and accommodate her. Like, can’t you see that she’s sick? She can’t eat anything unless she wants to risk spending hours in the bathroom and has to use a cane, for chrissakes! Nope. She’s too pretty, too female (did you know that all women are hypochondriacs and couldn’t possibly know anything about their bodies?!), too capable, too much of a well-rounded human being–to be sick.

Because people with chronic ailments and disabilities are apparently supposed to fade into the background and become one-dimensional. We are not supposed to inflict our challenges upon anyone else unless they specifically offer to “be there” for us (you know, the “support friend”, aka Fucking Rad Allies). Like, how dare you ask if this event is accessible? Accessibility is haaaard! You’re right, it is! Why is that? Ask yourself: what does a sick/disabled/injured person look like? What are their needs? What are they capable of?

I am a mainstay of the bike community. I frequently put on >75 miles a week. On Saturday I placed 6th in a race where I competed with 45 other people. Today I barely made it to work because the inflammation was so bad. Tomorrow I will probably be back in the saddle because staying still makes the inflammation worse.

The next time you see me (or the next person you see) I want you to try this on for size: this is what a sick person looks like. this is what a disabled person looks like. this is what a survivor of trauma looks like. Because you can’t tell just by looking at us, who we are, what we are or aren’t capable of.

Love and light,

RD

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