Thanks to author, Kathy Shaidle for sharing her writings. Kathy Shaidle was born in Hamilton, Ontario in 1964, and was diagnosed with SLE and myositis at age 27. Her first collection of poetry, Lobotomy Magnificat, was recently published by Oberon Press. The above article originally appeared in Catholic New Times as part of her popular series on living with lupus. These columns received four Canadian Church Press Awards; they will be published as a book-length collection called God & the Single Girl in the fall of 1998. This will be the first lupus memoir written by a Canadian. For more information about this book, call Northstone Publishing at 1-800-299-2926 or visit their website at www.northstone.com

Where the Clocks And The People Don't Work

by Kathy Shaidle

A Monday morning in January. Subzero. Six inches of snow. Not the day I'd have chosen for my first annual Disability interview.

I cursed (under by breath) as I slipped along unshovelled Parliament Street. At the taunting, wobbling panhandlers (still celebrating New Year's?) encamped, like a stranded Arctic expedition, at the corner of Gerrard. And (aloud) at the speeding car that grazed the stroller being pushed by the bundled -up mother beside me as we were about to cross that street.

When I arrived at the Family Benefits office, I shoved my papers to a harried worker through a slot in the bulletproof glass. It was 9:50, but the clock that hung behind her read 11:47, and remained in that state of karma-breeding maya for the duration of my visit.

The other waiting clients seemed just as broken. One longhaired, tattooed man knocked persistently on the glass partition, demanding an immediate replacement for a lost cheque. Refusing to believe that cheques weren't printed on the premises, he just kept spelling out his name, letter by letter, and rattling off his Social Insurance & caseload numbers, as if they constituted a mystical lock combination, or magic spell which, if recited often enough, would grant him his impossible wish.

The rest of us were mute, save for the odd sniffle. The downcast crowd, with their makeshift vinyl winterwear & mismatched mittens & casts & canes, resembled a none-too-successful junior hockey team, waiting for the bus back to Orillia, or wherever home was.

Bus terminals are terminally pathetic, but at least they have coffee & donuts. And clocks that work. And the promise of eventual departure.

I’m grateful to live in Canada, where a doctor I didn’t pay could convince a government I didn’t vote for to give me money for doing nothing more spectacular or productive that just getting well.

And I hate it. I hated that office. And as ashamed as I am to admit it, most of all I hated the shabby, beaten-down clients. Any myself. Because that morning I was, by implication, "one of them.."

I suppose I always have been, having lived below the poverty line much of my life -- a fact which shocked my hardworking mom and I when the Single Mother With Child level was announced one night on the news. I was nineteen then, and equally amazed a few months later, when my college loans officer asked if my mother had "left out a digit" in the form-box marked "Income." I’d never thought I was poor.

And I thought of my colleagues at Catholic New Times, just a few blocks south of the Disability Office. When they’d hired me, years ago, they’d apologized about the modest salary. Why? Given my lifelong frugality, it was more money than I knew how to spend--even in high-priced Toronto. I still didn’t think I was poor.

And still didn’t when I laid out those CNT articles about "solidarity with the poor." To me, that meant just about anything--except being actually poor

What gets me now isn’t my income (interestingly, it’s virtually the same as my old CNT salary). It’s that today, I have a worker instead of being one.

This isn’t what I wanted to do when I grew up; showing my bankbook to a total stranger under the staring eye of a stupid broken clock.

More importantly, this isn’t who I wanted to be. I’d gone to all the right rallies & read all the right books.

And had turned into just another loser with a superiority complex, with more compunction than compassion.

When my interview was over, I hoped for a sudden deus ex machina, a lightning-flash vision that would reveal, through my tears, Christ in the faces of the frozen, unblinking clients I was leaving behind. But instead of God’s voice, the only sound was the scratchy bellow of another client’s name being mispronounced over the loudspeaker. And all I saw & felt & smelt was fear & disgust.

I wanted to run all the way back to my flat, but the snow was too deep & my home was too far.

I'm a poet. On Disability. I basically do nothing. Twice. Asking me to write about “work” is like asking Newt Gingrich to sermonize on Matthew 25. (“Who?” he'd probably say...) But here goes:“Quitting your day job” is every artist's dream. Mine came true in 1991, when some grants let me write full-time.

Six weeks later, I contracted systemic lupus erythematosus, an incurable, life-threatening disease.

I'd always smugly agreed with Stephen King that “a little irony is good for the blood.” Someone else's blood, that is. An artsy armchair outlaw, I'd cultivated a connoisseur's nose for Tragedy, Absurdity, and The Strange Beauty of Ugliness And Pain.

So it's poetic justice that the attendant ironies of my condition are as burdensome as my illness itself.

During a recession, I'd quit a perfectly good “real” job to write poetry. Now as everyone knows, “writing” isn't really “work”—and “writing poetry” less so. When criticized for “just wanting to sit around all day,” I'd passionately protested. Not because this was false, mind you, but because it was true...

I'd worked since my sixteenth birthday, through college & beyond, mostly for men half as smart as me who made twice as much money. I felt entitled, at age twenty-six, to savour the irresponsible extended adolescence I'd missed.

So (my protests to the contrary) I planned to “write/do nothing” a bit, and “goof off/ do nothing” a lot.

That winter, I could do neither (see “poetic justice” above). Bedridden by arthritis, I used all the free time I'd planned to spend “doing nothing” doing nothing but morbidly pondering my Incredible Shrinking Life.

I soon realized that all my book-learning & adolescent anarchism had undone my “work til you die” socialization not a whit. What did it profiteth me that I'd virtually memorized Merton's ode to “doing nothing,” “A Signed Confession of Crimes Against The State”? Couldn't recall a bloody word when my long-suffering mother asked shyly, “Do you think you'll ever work again, dear?”

And I'd screech through gritted teeth: “ I AM working, MU-THER!”

Meaning “writing.” Which I wasn't even. Which isn't, even. “Working” that is...

I eventually grew tired of, tired from, doing nothing. So I took up “doing nothing” in earnest. Or instead, if you like.

I took up contemplative prayer. If only in terms of cosmic economics, I was still, I believe, contributing some mysterious something to the world.

My world, meanwhile, had shrunk to four walls, within which brewed an ever-growing mess.

Because housework was painfully impossible. On my rare good days, my biggest accomplishment was doing some laundry.

I'd been reduced to being... just a housewife. And I wasn't even married! My family's women have worked outside the home for generations; neither Cosmo, Donahue, or Police Woman had prepared me (the “smart one in the family,” it's first liberated college girl) for this reluctant fifties flashback. There's no Nobel Prize for Housework, I'd mutter. Ambushed by yet another irony.

Then I developed a rather rare lupus complication. Prednisone was prescribed, and I moved without pain for the first time that year.

When movie burn victims remove their facial bandages, they always shout, “Give me a mirror!” Post-prednisone, my first words were, “Give me a pen!” I started scribbling, nonsense mostly. My handwriting stared up at me, a long-lost child, shaky, a little sheepish, but alive.

I could write again. So I did.

Catholic New Times hired me to write about chronic illness. As their former Production Manager, I knew the paper well, and tried to give my columns a “social justice” spin.

But my illness had made me very small (I weighted 85 lbs.) and my world had shrunk in sympathy, leaving no room for politics or propaganda. It was ridiculous to blame my lupus on the Bush Administration, to apply Marxist analysis to the task of opening juice bottles when my hands were swollen stumps.

So I stopped trying. Wrote about my latest hair-do, or watching Oprah! I was surprised & gratified by the volume of fan mail I received.

But as Jesus would say, you just can't win. Seems I'd lacked the good taste & foresight to be born in Central America, so (to a few) my suffering wasn't “political” and my columns, therefore, “too personal.”

So: I was “working” again. Meaning “writing,” albeit from the fringes of a fringe-to-begin-with paper. But: to a minority, my “personal” stuff wasn't “real writing;” some poets who'd known me only as one of their number agreed; and society didn't consider any of my writing (poetry or prose) “real work” at all.

“My mother says to get a job,” sing neo-punks Green Day, “but she don't like the one she's got.” I feel guilty when I think of those my age who've make careers out of unemployment. Gee! I got to be a fashionable “slacker” without even lifting a finger. Because I couldn't lift a finger.

I could in remission though, and applied for “real” jobs. So did a hundred others—whose resumes presumably don't crash at “1991” like mine.

I'm not in remission now. Three drugs are used to treat lupus. As of today, I'm on all of them. The latest may fix my fatigue. Too soon to tell. Chloroqine takes six weeks to start “working.” Pretty lazy for “fatigue pills,” huh? But seriously folks: the good news is that it will take chloroquine a little longer than six weeks to make me go totally blind!!

(Just what the world needs. Another blind poet. Homer. Milton. Me.)

These drugs can only (maybe) restore me to 80% normal. If that number sounds pretty good to you, amputate 20% of yourself & call me in the morning. From your “real” job. (If they let you keep it.) The kind of job I said I never wanted, and may never have again.

My invisible disease is my invisible job: full-time, on-call, mine til I die. One which requires no education or experience and which pays accordingly.

And also today: the Japanese goverment's announced their earthquake compensation plan. $50,000 for “dead breadwinners.” Half that for “anyone else.” Self-centered in the extreme, I wonder what small change my death might bring.

A chapter in Laura Chester's memoir Lupus Novice is:

Disaster, Called A Vacation.

I misread that at first as Vocation.

We were both right all along.

(Published in Compass: A Jesuit Journal, Summer 1995)