One of the least attractive aspects of having multiple sclerosis is that it has turned me into a bit of a princess.

When I was a little girl, I never wanted to be a princess. I didn’t think it was any luxury to be dressed by a flock of ladies-in-waiting. I haven’t reached that particular stage of princessness…yet. But it could happen. The other night when I was in pain, my husband got a bit over-solicitous, and pulled a sock over my decidedly un-Cinderella-sized foot. I said, “Let’s not make this a habit.” I thought that would stop him cold. His eyes widened in horror. Then he picked up the other sock.


Am I a princess? I can not bear to stand in line. Now you’re going to hate me. Who doesn’t hate those princesses you see at the grocery store who hiss and flare their nostrils if the person in front of them pulls out food stamps, or, heaven forbid, roots around their pockets to furnish exact change? I promise, I’m not that kind of princess. The hissy type. The type who berates the slow moving cashier. But I tell you, a slow moving line sends me into a panic, a crisis I try my level best to keep to myself. Standing, simple standing, is an arduous task for me. The longer I stand, the more painful it gets. What starts off as a tingle in my legs swiftly escalates into something like a burn. If you’ve ever been tickled too long, you might begin to get the idea.

I know. I know. That seems kind of strange. Welcome to multiple sclerosis.

Am I a princess? I don’t clean my own house. Now you hate me. I do the light cleaning. I do the family wash. If my husband makes the dinner, as a rule I do the dishes. Unless, of course, my husband has made the dinner because I’ve had a rough day. On those rough days, I get out of the cooking and the dishwashing, while he is stuck with both. My husband picks up my slack. But he doesn’t pick up that much around the house. For that, and for the deep cleaning, we turn to M., our housekeeper. M. is extremely non-judgmental. I have never, ever, heard her trash-talk our family for our slovenly ways, like I do when I’m the one cleaning up. She would never say, as I said this morning, “A dirty thermos? In your sleeping bag? Really?” She just goes about her business of cleaning our house, and lets me go about my business of undoing her good work. M. does this work because I find it too fatiguing to drag a mop across the floors, yet in all the years she’s worked for us, she’s never once commented on how strange it is that I summon up enough energy to pop over to Y to lift weights.

What M. does is the real heavy lifting. On those weeks when M. can’t make it, and I’m the one to clean the house, I only last about 40 minutes before my legs start buckling beneath me. Add just about any commercial cleaning solvent to the equation, and I’m as dizzy and wrecked as a high altitude climber who forgot to tote the oxygen. When M. returns the following week, I’m as happy to see her as my salivating dog. I apologize for the mess I’m too gimpy to clean. Then I get in my car, and I drive off to the Y.

So, to recap: I don’t stand in lines. I don’t clean my own house. Now let’s add the most princessly feature of all…can you guess?

I don’t work.

Not to make money, anyway. Now you hate me. You work. And work is no fun. I know that. I worked once. I was working three jobs and going to grad school when I was diagnosed with multiple sclerosis. I never made very much money. I made so little, in fact, that I really resented that chunk that came out of my paycheck to go to Social Security.

These days, the only work I do is fun stuff; I write, and I help other writers write. I touch no filthy lucre. Like any princess, I have my favorite charity. All the proceeds go to the arts center down the block. If I’m too much pain, I cancel, or I postpone. No one is the wiser. No one is my boss.

I am a princess. I have to live by a separate set of rules. I don’t stand in lines, I don’t clean my own house, and I don’t work for money, just for fun. There is nothing about multiple sclerosis that is fair.

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I was diagnosed with multiple sclerosis during my second year of grad school at the prestigious Iowa Writer’s Workshop, which had granted me a coveted Teaching/Writing Fellowship. Up until that point, my future looked promising. I had only two sources of discomfort; the numbness and tingling in my legs, and the notion that my novel was a sham.

My friend Iqbal Pittalwala and I put our work up together. Iqbal’s piece was destined to become the title story of the delightful Dear Paramount Pictures. My piece was an excerpt from a novel destined to remain unpublished and untitled.

Our class had barely settled in our seats when workshop director Frank Conroy declared that Iqbal and I had presented “an embarrassment of riches.” I had never heard the phrase ‘embarrassment of riches’ before. I felt embarrassment, all right. Iqbal’s story was flawless. But my piece?

One of my classmates wondered aloud if the central figure in my novel was merely a MacGuffin. I had never heard the term ‘MacGuffin’ before, either. Back then we turned to Frank for definitions. We have since lost him. I turn now to Wikipedia.

A MacGuffin…is “an element that … drives the plot of a work of fiction”…The MacGuffin is the central focus … in the first act, and then declines in importance as the struggles and motivations of characters play out. Sometimes the MacGuffin is actually forgotten by the end.

My classmate had nailed it. The central figure in my novel was a missing person. I had no idea of how to leverage that character’s disappearance. I had no sense of the plot. I had been hoping that if I focused on the remaining characters, the story would suggest its own resolution. I allowed each sentence to suggest the one that would follow. Chapter after chapter, my missing person receded deeper into the background. Like a MacGuffin, my missing person seemed likely to be forgotten by the end.

Frank bristled at my classmate’s suggestion. MacGuffins were flim-flam. My novel was the real thing. “I think we’ll find that every word in this novel is necessary for its inevitable conclusion.”

After class, I considered asking Frank some leading questions, so I could coax out his notion of my novel’s inevitable conclusion. I didn’t have the moxie. I feared he would catch on.

Instead of discussing my anxieties about my novel with Frank, I discussed my anxieties about my numbness and tingling with a neurologist. The symptoms I described made sense to the neurologist, even the most bizarre. Especially the most bizarre.

The neurologist told me I had multiple sclerosis. I’d never heard the term, ‘multiple sclerosis’ before. The disease he described was ruthless. Bit by bit, my central nervous system would self-destruct. My life would be foreshortened. That was it. The end.

I wore my Workshop mask, listening to the nightmare prognosis as though it were just another critique. Surely this was someone else’s story, this prognosis of a horrific decline? I didn’t ask the neurologist any questions. I didn’t have the moxie. I accepted his “literature.” I think I even thanked him. I walked off, and waited until I was far beyond his sight line before I allowed a tear to fall.

I went directly from there to the Workshop. It was on my way home.

Secretary Deb West and Program Associate Connie Brothers were the first to console me. Connie assured me that plenty of writers persisted through chronic illness; both men on the faculty— Frank Conroy and James Alan McPherson—had diabetes, as did visiting writer Thom Jones.

On hearing the news, Frank ushered me into his office. He trembled with indignation at the audacity of this as-yet untested diagnosis. I later learned that Frank would telephone his good buddy, Antonio Demasio, then the head of University of Iowa Neurology. My neurologist would get in deep trouble. Don’t feel too sorry for him. He would retaliate with my lumbar puncture. My spinal fluid would leak out through the puncture, leaving my unsupported brain to scrape against my brainpan. The resulting spinal headache made me want to die.

If Frank Conroy played the role of father, or perhaps Godfather, my classmates Karen Leh and Janet Roach played the role of sisters. Karen held my hand as I heard the tests results that confirmed the diagnosis. Karen and Janet convinced Frank, Jim, Connie and Marilynne Robinson to pitch in with them to buy me a used TV.

Marilynne, the mother figure, invited my husband and I to her home for dinner. She assured us that watching television was an acceptable pastime. I had no interest in television. I had no interest in finishing my novel, either. My diagnosis prompted an epiphany of what I really wanted out of life. I wanted a child.

As the year came to close, Marilynne took me out to eat, on Paul Newman’s dime, to urge me not to give up on my novel. “Finish your novel to support your child.” I smiled politely. I understood it could be difficult for the author of Housekeeping to imagine that not everyone’s novel could make enough money to actually support a child. The success of Housekeeping had enabled her to support two children.

I had one last chance to come clean with Frank Conroy. I went to his office for his advice on grading. The most talented student in my undergraduate writing class was a Brit with a cockney accent and a Billy Idol haircut. The boy had written a gorgeous short story I had praised to the sky. After that, he quit going to class. I didn’t want to flunk such a talented writer.

“Maybe I put too much pressure on him,” I suggested.

There was no pregnant pause.

“Nonsense,” Frank snapped. “The boy deserves F.”

At the end of the year, I handed in a novel with a pseudo-ending. The gig was up. I’d written a MacGuffin. Frank did not follow his own advice; he was more of a softie than he let on. I didn’t get an “F.” I got an MFA.

In the years that followed, my classmates produced an embarrassment of riches. I added each new gem to my bookshelf. My own writing receded deeper into the background. I focused on raising my child. That child has turned out fine. I have finally returned to writing. In my blog, http://www.mslabratcom/, I examine my life with multiple sclerosis. I have a real story to tell, after all. I have located that missing girl in my novel.

I am the MacGuffin…no longer.

author’s note: I recently attended the 75th Anniversary Reunion at the Iowa Writer’s Workshop. It took me three solid days to recover from leaving my loved ones in Iowa City all over again. One of the very many nice surprises of the weekend was the discovery that this essay appears, in a slightly modified form, in the Workshop’s anniversary anthology, Word by Word. I was tickled to be anthologized with so many writers I’ve admired for years.
Recommended Reading:

Here are but a few of the gems from that embarrassment of riches that was my class at the Iowa Writer’s Workshop. I recommend all of them without reservation:

A Better Angel: Stories by Chris Adrian

Children’s Hospital by Chris Adrian

Gob’s Grief: A Novel by Chris Adrian

The Testament of Yves Gundron by Emily Barton

Brookland: A Novel by Emily Barton

Juniper Tree Burning by Goldberry Long

Living With Saints by Mary O’Connell

The Invisible Bridge by Julie Orringer

Dear Paramount Pictures by Iqbal Pittalwala

The Mysterious Benedict Society Series by Trenton Lee Stewart

The Lonely Polygamist by Bradley Udall

The Miracle Life of Edgar Mint by Bradley Udall

It looks like the very talented Lisa Taggert, who helped my edit my fellowship application, wrote a book I ought to read: Women Who Win: Female Athletes on Being the Best

Street Shadows: A Memoir of Race, Rebellion and Redemption by Jerald Walker
My review:
amazon link:
Am I missing any big publications from the authors to come out of our year? Workshop collegues, let me know. I am always eager to read and recommend yet another great book.

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