My Life on Lupus: I Want a Better Disease

I haven’t been posting much these days, in part because it’s winter again. Winter always rips through my body. Why is that? Winter should just be cold weather and snow and ice, right? Not for me. I guess it makes sense when you think about it: my body gets cold, I walk around hunched over and tense, my muscles lock up, then they ache and keep me from sleeping well, then I walk around for days at a time fuzzy brained AND achy AND hunched over AND tense AND cold. Sounds logical, right?

Except for the fact that sick minds aren’t logical. Whenever I get a weird symptom, the first thought I go to is: oh God, I’m dying. I now have MS or a tumor or early onset Parkinson’s. Now I’m really, really screwed.

Of course, that’s never what it is. It’s always the damned lupus. Every once in a while, though, I want something different–not one of those dying diseases, you understand, but the straightforward ones. The ones where the doctor looks into your eyes and nods and says, “I’m writing you a prescription. This stuff is hard on the [insert sensitive organ here–bowels, knees, mouth, etc.], but once it gets in your system, you’ll feel much better.”

See? I’m a reasonable person. I can take a long, painful convalescence. I just want to know that after a period of time that I know will suck, I’ll feel like myself again. I want a disease that will go away.

Recently, I’ve been bothered by pain in the arches of my feet. For maybe a week now, I’ve been waking up to painful arches. What the hell kind of symptom is that? I know I should probably talk to my doctor about it, but a trip to the doctor always seems to involve a full-blown plan of attack: which doctor should I call? What should I ask that will make the doctor respond? What time should I haul my ass to his office? What symptoms should I remember to talk to him about? So many, many steps, and I have energy for none of them. Plus, it’s likely that if I do get in touch with someone, it’ll mean five more doctors’ appointments with different specialists to rule out what my symptoms might be pointing to. Then, maybe some more appointments to deal with treatment. The last time I told my GP I had sore hips, I found myself juggling appointments with four different doctors (including two new ones, which are always fun to manage; one I had to drive 45 minutes away to see), AND I got slapped with two ultrasound-guided cortisone shots in two different places AND a six-week, twice weekly stint in physical therapy. The good news is my hips no longer hurt. The bad news is if they start hurting again, I’d rather invent myself some robot legs that run through all those hoops a second time. At least I could do most of the research while lying on my couch.

Anyway, we’ll see if I get anything done this week about my feet. Most likely, I won’t be feeling any better anytime soon. But that’s the life of someone with a chronic illness. You can never sit back and say, Smooth sailing from now on.

Paule Marshall: The Center of Life

I managed to find that other passage I typed out and taped to my wall in college. I’ll include a bit more of the book for context, and because I might have quoted more had I known more about life back then. From Brown Girl, Brownstones:

Faces hung like portraits in her mind as she walked down Fulton Street: Suggie and her violated body, Miss Mary living posthumously amid her soiled sheets, Miss Thompson bearing the life-sore and enduring, Clive and his benign despair, her father beguiled by dreams even as he drowned in them, the mother hacking a way through life like a man lost in the bush.

Those faces, those voices, those lives touching hers had ruined her, yet, she sensed–letting her gown trail on the sidewalk–they had bequeathed her a small strength. She had only this to sustain her all the years. And it did not seem enough. It might be quickly spent and she might fall, broken before her time and still far from the center of life. For that was the quest. And a question flickered in her mind like a reflection of the lights flickering along the street: What was at the center?–the neon drake over the White Drake Bar floated, glittered, and went out–Peace, perhaps, as fleeting as that was, and the things that shaped it: love, a clearer vision, a place…

–Paule Marshall

Favorite Poems for a Crappy Day: “The World Is Too Much With Us” (William Wordsworth, 1806)

All through my sophomore year in college, I had a typed version of this poem taped to my dorm room wall, along with a passage from Paule Marshall’s Brown Girl, Brownstones. Not sure why I stopped taping poems to walls. Maybe it’s because I don’t own a working typewriter anymore.

THE world is too much with us; late and soon,
          Getting and spending, we lay waste our powers:
          Little we see in Nature that is ours;
          We have given our hearts away, a sordid boon!
          The Sea that bares her bosom to the moon;
          The winds that will be howling at all hours,
          And are up-gathered now like sleeping flowers;
          For this, for everything, we are out of tune;
          It moves us not.--Great God! I'd rather be
          A Pagan suckled in a creed outworn;                         10
          So might I, standing on this pleasant lea,
          Have glimpses that would make me less forlorn;
          Have sight of Proteus rising from the sea;
          Or hear old Triton blow his wreathed horn.

Shakespeare Is Everywhere: Editorial Haiku Edition

Figures that Big Bill would infiltrate a poetry contest for editors:

Let us not

to the marriage of two clauses

admit a comma splice.

–Adriana Cloud, Winner of the American Copy Editors

Society Grammar Day Tweeted Haiku Contest

“Fie on you all! You editor folk alter wherever you alteration find!”