She Works Hard for the Money

May 2, 2011 at 3:19 pm (Uncategorized)

I know I’ve vanished from this blog for the past few weeks.  I wasn’t hospitalized.  I wasn’t off seeing sarcoidosis specialists.  I wasn’t too tanked up on pain medicines to be able to form words.  I wasn’t blind half the day, or tipping over from vertigo (at least, not all of the time).  Something stranger and more mysterious than neurosarcoidosis was happening.

I was working.

For the first time in a long time, I was earning money for my labor.  I pitched an idea to a magazine.  Then I followed up aggressively with the editors.  I got an assignment to write an article—about something other than sickness.  I researched my topic, pestered people for interviews, and transcribed my interviews into notes.  I wrote a first draft, asked my husband, Jay, to edit it, incorporated some of his changes, and wrote another draft.  I proof-read it for typos and mistakes, anguished over it, and e-mailed it off to the editor.  Once I get his comments, I’ll incorporate them.  I might have to rewrite it again.  When it’s all completed, I’ll have a two-page article published in a solid magazine—and a check for whatever 55 cents a word adds up to.

This used to be my life.  It wasn’t glamorous, and it didn’t pay well.  But I got a small thrill with each check.  I got money for thinking and writing.  It doesn’t get much better than that.

I tried to keep working in Chronic Town.  I sent off a few essays, and I launched this blog.  But I just couldn’t keep going.  When the sarcoidosis moved into my brain, I had a hard time reading the words I typed.  The terrible pain in my head could only be managed with hard-hitting narcotic pain medicine, which didn’t exactly clarify my thinking.  Plus, as all us in Chronic Town know, the illness devoured my time—sitting in doctors’ offices, getting all-day drug infusions, or sleeping in the fruitless attempt to sate the insatiable fatigue the illness caused.  I stopped trying to work on deadline after one particularly frustrating day when the words I was trying to write didn’t coalesce into anything resembling language, but instead swirled and danced in time with the throbbing in my head.  After that, I didn’t stop trying to write.  I kept up this blog as much as I could, and I plodded along on a memoir about my experiences in Chronic Town.  However, I gave up getting paid for my work.

I was too sick to recognize the magnitude of this loss.  Work is about much more than a weekly pay-check.  It defines us.  When you’re chatting at a cocktail party, what’s the first thing you ask someone you’ve just met?  The answer to “What do you do?” is your identity.  Of course, it’s not all of you, but in our work-centered world, answering that key question with, “Um.  I’m chronically ill and can’t do much a hell of a lot more than sleep 14 hours a day and go to doctors’ appointments” isn’t a very satisfying experience.  Trust me.  I know.

Work anchors us.  It gives shape to our days.  It connects us to a place and a community.  Without work, days feel flabby and formless.  When you’re home sick—month after month—the “work” hours are the loneliest.  While the rest of the world is at the office, you wait.  The days fly by, and yet feel endless.  Resting and relaxing just aren’t that fun after a couple of days.  Resting after a hard day’s work is true rest.  Resting after twelve hours’ sleep is just depressing.

It’s ironic that I’m composing a paean to work life.  I’ve never been one to work for the sake of working.  I’ve chafed against meaningless jobs that provide nothing but a check.  I’ve always wanted my work to mean something.  That’s why becoming a somewhat successful writer was so damn cool.  I felt like I was making a difference, and that I was using my talents.  Before this, I flitted from brainless job to soulless job—filing papers at a seedy used car lot, selling expensive wedding cakes at a high-end bakery, cleaning houses, answering phones, and sending out bills for a power company.  Although I didn’t last long at any of these, that’s more than I can say about the two jobs I literally walked out of on my first day—at a telemarketing gig where I was supposed to lure business clients into holding corporate functions at a race track and at an especially anal office in the Defense Department.

As with so much else in life, I didn’t appreciate the value of work until I lost the ability to do any.  Without the capacity to pay for my share, I discovered all sorts of nasty power dynamics in my relationship with Jay.  Although he always says we’re equal partners, it doesn’t always feel that way to me.  And it’s bothered me that Andrew hasn’t gotten to seem me as a worker.  For much of his life, I’ve been horizontal.

The value of work transcends paychecks and the family dynamics surrounding them.  Working is a core aspect of our humanity.  We’ve always had to work to put food on the table.  While working, we use our bodies, minds, and, yes, I think even our souls, to create.  Through working we earn rest.

I’m not sure how long this period of feeling well enough to work will last.  It’s already been tricky to figure out how much I can work without triggering a backlash from the sarcoidosis.  If I push myself too hard for too long, I feel sicker.  A few times I’ve had to retreat to bed—and whole, long days of resting—to recover from my comparatively small-seeming efforts that are nonetheless over-zealous for my depleted body.  I’m trying not to worry about how or when my working days will come to and end.  That would spoil the fun of it.

And now, I’d better get back to work.

1 Comment

  1. roz heafitz said,

    How clearly and poignantly you remind each of us of the privilege that is satisfying work.

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