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!”

Finally! A Scientific Answer to the Question We’ve All Been Asking! (Hint: It’s About Colors and a Dress)

The dress that’s causing the collapse of civilization

Hey, Fickle Readers! Our 24-hour search for an explanation as to why some people saw a picture of a blue-and-black dress as a yellow-and-gold dress is finally at an end! In his impressively timed and sometimes mind-bogglingly technical article, Adam Rogers of Wired explains that the reason why some people insist that they see one set of colors and others insist on another set has to do with what wavelength of light their brains think is being reflected in the picture. Apparently (and Rogers consulted a neuroscientist who’s devoted 30 years to studying how people perceive color, so you know he knows a little more about the phenomenon than the guy who credited one’s emotional state to the way one’s eyeballs work), whenever you look at an object your brain automatically takes into account the colors of both the object and the light source that’s illuminating it. Then your brain handily filters out the color of the light source and leaves you with the “real” color of the object. As with many brain functions, however, the system isn’t fool-proof. “This image…hits some kind of perceptual boundary,” says Rogers, and confuses the brain as to what kind of daylight it’s looking at: if your brain sees an image in blue light, it takes out the blue and leaves you with yellow and gold; if you perceive the image in gold light, your brain adjusts to blue and black.

One interesting possibility: Bevil Conway, another neuroscientist, speculates that the people who see yellow and gold would be used to seeing the dress under strong sunlight, and that he guesses “night owls are more likely to see it as blue-black.” If the Fickle-Spacetime household is any indication, he’s right. I was the only one in my family to see the dress as blue, and I regularly stay up way way way too late. The Inspector, an inveterate morning person, saw yellow and white, and Little Fickle, who goes to bed at 8:30, saw brown and white.

And something else I just noticed: in the Wired article, there’s a gif that flashes between a very light pic of the dress and a much darker one. If I just look at the very top of the high-white-contrast photo, I, the only stubborn bluesayer in the family, can see gold and white.

Will wonders never cease?

When Winter Comes…: The Death of John Keats, February 23, 1821

The house Keats died in, 194 years ago today.

I love to read the Romantic poets in the springtime. For all their faults (and the prejudices of those who boosted their work after their deaths), these six guys really knew how to convey the fleshy, hopeful energy of the growth season. My absolute favorite of the bunch, at least from a biographical perspective, is Keats, a working-class genius who died in Italy at the age of 25. He’d been suffering from TB for three years, and he’d made the trip to Rome because he and his friends didn’t think he’d make it through the winter in England. Keats died far from home in a tiny, melancholy room near the Spanish Steps. It’s a beautiful place, although I’m not sure he had any windows from which he could appreciate the view.

I think I’m drawn so much to Keats’s work in part because he lived with illness (rather than just dying from it) and because he always expresses an overwhelming sensitivity to how little time we truly have on this earth. Here’s the first stanza from one of his longer works, Endymion. Most have never read it in its entirety (not even me), but you’ve got to admit, with a first stanza like this you don’t really need any more poem afterward.

A thing of beauty is a joy for ever:
Its loveliness increases; it will never
Pass into nothingness; but still will keep
A bower quiet for us, and a sleep
Full of sweet dreams, and health, and quiet breathing.
Therefore, on every morrow, are we wreathing
A flowery band to bind us to the earth,
Spite of despondence, of the inhuman dearth
Of noble natures, of the gloomy days,
Of all the unhealthy and o’er-darkened ways
Made for our searching: yes, in spite of all,
Some shape of beauty moves away the pall
From our dark spirits. Such the sun, the moon,
Trees old, and young, sprouting a shady boon
For simple sheep; and such are daffodils
With the green world they live in; and clear rills
That for themselves a cooling covert make
‘Gainst the hot season; the mid-forest brake,
Rich with a sprinkling of fair musk-rose blooms:
And such too is the grandeur of the dooms
We have imagined for the mighty dead;
All lovely tales that we have heard or read:
An endless fountain of immortal drink,
Pouring unto us from the heaven’s brink.

The 2015 Oscars: Hoorah for the Status Quo!

Okay, Academy Awards, I think I’ve finally figured out how you guys operate. It’s not about substance: it’s the presentation that counts. It’s okay to be the biggest celebration of rich white men this side of the Republican National Convention if you let other folks be presenters and sit in the theater. It’s okay to distribute exorbitantly priced gift bags to astoundingly wealthy people if the host jokes about it. It’s okay to show a bevy of women beaming supportively at their award-nominated men (and have shots of more women left behind while said men collect their awards) as long as you let one actress give a speech about how important motherhood and equal pay are. It’s okay not to nominate any actors from, or the director of, a film about the Civil Rights Movement as long as you give that film the award for best song (and a platform for the best acceptance speeches of the evening, but you don’t get credit for that one). It’s okay to have a known domestic abuser present the award for Best Picture as long as the movie (about an aging, once-famous white man becoming famous again) has a Mexican director. And it’s okay to go back to picking the usual White Man’s Epic every year (okay, okay–we might be shifting genres since “The English Patient,” “Braveheart,” and “Gladiator” won) as long as you break the pattern with something like “12 Years a Slave” every once in a while.

I gotcha, Hollywood. Thanks for helping me see the light. (And for helping me spend an evening sitting on the couch playing games on my Kindle. Luckily, I got to sit beside my husband the whole time.) Hopefully the next time I pay attention to the Oscars–maybe in ten years or so?–enough of the (ahem) old voters will have stepped aside to let new voices weigh in on what makes a truly great movie. Then again, power does tend to hang on til the very end, doesn’t it?

(And just in case you Fickle Readers out there think I’m being overly sensitive about all this? Take a look at this collection of anonymous interviews with Academy members about their Oscar ballots and see for yourself how “unbiased” members really are. It’s awfully entertaining, especially if you like seeing people try to rationalize the blatantly arbitrary. Also, have fun finding the many ways interviewees deploy the “we’re not racist, but” argument against the movie Selma.)