Patient, PhDWriting at the Intersection of Academia, Advocacy, and Chronic Illness
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Category : photos

Wordless Wednesday

June 23, 2011 No comments Article
Tags: photo, storm, wordless wednesday
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Life Lessons

June 17, 2011 No comments Article

Air Conditioners

Image by Trevir666 on flickr.com

I’ve been putting off buying a new air conditioner for a month now. Last summer, in early August, my old bedroom window unit (and when I say old, I mean like purchased-during-the-Carter-administration old) died a noisy death, and my landlord gave me a hand-me-down unit because you’ve got to be kidding if you think you can just waltz into the Home Depot in Georgia in August and expect to pick up a 5000 btu a/c unit.
So I used the hand-me-down a/c for a month or so. I thought it was kind of noisy, but it had a nifty electronic display, and a timer (not that I ever used these features– It was either set to 75 or 80 degrees, or it was off).

Fast forward to the beginning of the hot season in the South (aka “May”). For the last month and a half, I had a suspicion that my a/c unit was getting noisier and noisier (like rattle-the-panes-out-of-the-window noisy). I deliberated for quite a while, and lusted after the “library quiet” portable a/c units that cost $300+, tried to talk myself out of it, and then finally this week I bought a new unit at Home Depot and installed it. The unit itself is decidedly utilitarian– an LG with a high and low setting and an old-school dial thermostat. But it’s light, tiny, and oh so beautifully quiet. And it was only $100. That $100 is the best investment in my sleep (and sanity!) that I’ve made in a long time. Two nights of uninterrupted sleep (no rattling, no wheezing and whining from the compressor!) has been like a free vacation.

I could kick myself for not taking care of this sooner. So the next time I put something off, or resist spending money on myself, I need to take a closer look and ask “Would buying (or doing) X significantly increase my quality of life?” If the answer is yes, and I can afford it, then I need to tell the voices in my head that say “you should just learn to live with what you have” to shut it. Yes, there are some things that cannot be “fixed” (central air isn’t going to magically appear in my apartment) or other “solutions” that are really just an excuse to buy shiny things (sure, I’d love a new-new Volkswagen 2012 Beetle when they come out in the fall, but my car is running fine, even though it’s older and has some cosmetic flaws). However! when it comes to something that adds convenience and/or comfort, I have to remember that I’m investing in my health and quality of life, which goes a long way toward being content, even–or especially–without all the shiny stuff.

But if anyone wants to, umm, “donate” one of these to me, I’ll happily accept it:


2012 Volkswagen Beetle
Tags: life lessons, things I like
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Thinking Out Loud

June 15, 2011 No comments Article

Some days I look at myself and it’s like “Why are you behaving like a schoolgirl? Get a grip!” But then I wonder if all this talk of growing up and maturing is just a neat trick designed to make us less afraid of taking on responsibility. I have to admit I kind of like feeling like a schoolgirl every once in awhile, in the same way I’m happy to be carded at the liquor store. On the one hand, I often feel very alienated from my body and all its aches, pains, malfunctions, and failings. But on the other hand, my body *is* me, and I identify with and (generally) take a lot of pride (and even pleasure) in how I appear in the world. When my body ceases to exist, I cease to exist. Damn you, Descartes, and your stupid mind-body split.

I think this simultaneous connection to our bodies and alienation from our bodies makes the mental aspects of chronic illness and chronic pain—brainfog, headaches, sleep disturbance, cognitive problems, etc—the hardest to bear. It’s like everything else is ravaged and all we have left is our minds. Until we don’t anymore. And people who have never been chronically ill or disabled don’t—can’t—understand. I’m not a praying kind of girl, but I do hope that I get to keep my intelligence for a significant while longer. I’m not sure what I would do if I had CNS lupus and could witness myself declining, my mental faculties slipping away. I know that must come eventually, for everyone, but I hope it comes for me in old age, like a slowly emptying hourglass, almost imperceptible.

Tags: deep thoughts, lupus, mind-body split
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banning books ≠ "guiding what young people read" (or: the pitfall of nostalgia for teen innocence)

June 9, 2011 2 comments Article

Several days ago, a friend sent me a link to this smart blog post, a response to an article in the Wall Street Journal that suggests most YA novels are “rife with explicit abuse, violence and depravity” that doesn’t reflect the reality of teens’ lives, and that parents, teachers, and librarians should actively seek to prevent teens from reading these books.

(more…)

Tags: censorship, reality, young adult fiction
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Speaking of Lupus

June 8, 2011 No comments Article

If you have lupus—or know and love someone who has lupus—these short videos on WebMD, hosted by Christine Miserandino of the Spoon Theory/But You Don’t Look Sick, are a really honest, moving account of what living with lupus (or any chronic illness) feels like.

Tags: lupus, spoonies, video
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