Tag Archives: multiple sclerosis

On Tests, on Failure…

scansTomorrow, I’ll go in for my eighth MRI. I’ve only had one MRI with positive results. Usually, there are more lesions. Usually, there will be new meds. These are tests I fail regularly. When I was in middle school, I got a 65% on the long division test. In high school, I failed a chemistry test. Later, I did not do well on the LSATs, but I didn’t really want to be a lawyer, anyway, did I? Life is too ambiguous to insist on being so sure.

This past month, I filled out an application for a new doctor. “I don’t know if I can handle anymore rejection,” I said to my mother. I had received three manuscript rejections the day before. Still, I detailed my c-sections and my multiple sclerosis and my depression on the papers. I was accepted. It was a thrill! At my first appointment, I was polite. I tried not to seem overly needy. He explained to me about depression. I remembered my melancholy adolescence and drinking through college and nodded to him when he explained about the brain and chemicals. I thought about my grandmother. I wanted to explain to him what I knew about science and feelings. I’ve tried to control my brain chemistry with thought, and when I can’t–unsurprisingly!–have found the ultimate illusion of failure. Emotions and science have a complicated relationship.

Last month, when I opened the email from my servicer that my grace period was ending for my student loans, anxiety spiked. But I don’t have a full-time job yet, I said to the email. I have not yet received all the rejections from my manuscript! I needed more time to redeem myself, and I still continue to spend all the time in the world arguing this in my head. How easy it is to forget the many people in my shoes, also in the muck of the temporary plight of the humanities, people I don’t consider as having failed. To believe in failure assumes that the chances for success are finite. I feel like I’ve realized something as I type this, yet I know that in the face of a particularly hard rejection or a disappointment, I will forget again.

I have read all the articles about how to make an MFAW worth it, how to survive post-degree life, how to make the degree count for something, and though I do all these things because I love them, I wonder, as I always have, what defines a writer? How do you meet whatever measures and hurdles? How do you pass that test? To my students, I say, If you write, you are a writer, but do I believe that for myself? Sadly, not right now. Right now, I believe that if you can publish a book, if you can pay back the loans for your writing degree with a job you acquired as a result of that degree, then you are a writer. I don’t hold these beliefs about other people who write, but these feelings haunt me about myself. Feelings are not rational. And who knows how that will change with time? In ten minutes, while I’m jotting down notes about the novel I’m afraid to start, I might change my mind. Or I might be 80 years old with dozens of manuscripts and no books, and then, I might even consider myself a writer. There is something to be said for keeping on.

Around some people, I become unsure, and I feel like I am not who I am, or that I am flawed and my body is weak because it is diseased, or that I am doing the wrong things. Some people are just so sure. I ask my husband, “Why do I stay quiet? I don’t want to pass their tests. I want to politely disagree. I do not always want to be the world’s little sister.” And as I say this, my mind is back in the conversation with my mouth closed and my insides quivering with dissent. I don’t want to be told everything. I want to tell, too. At some point in my life, passing the test became about following directions, meant allowing myself to be told. How to fail, now?

A month or so ago, I took a Buzzfeed quiz that, in some psychic way, told me my biggest fear was failure by analyzing my favorite pictures from a selection. Yes, I chose a photo of a hand beckoning out of the dark. Yes, I chose the photo of a woman staring into an overgrown field. Sure, I chose the picture of a couple standing under an umbrella in the rain. Somehow, Buzzfeed was right, and they, whoever they are, passed the test: I am afraid of failure, and then I wondered if I had passed the Buzzfeed test by answering the questions right. Hey, who’s testing who here? I wanted to know. Buzzfeed has also told me I am sensitive, that my outgoing personality masks my introversion, and that if I were a hippie, my name would be Flower. They always pass, or I always pass. The thing about the pain of failure is that it’s a smack in the face to hope. I remember the initial failure I felt after each c-section, and how now, the failure of my body to do what nature intended has become gauze-like in comparison to my sons, who, in my mind, could not fail me if they tried.

While I’m in the MRI machine tomorrow, I will have an IV–my least favorite part. This is for “contrast,” something that makes me imagine neon hi-liter fluid coursing through my arms and legs and brain while I try to keep still. “Try not to swallow for the next minute and 40 seconds,” the radiologist will say over a speaker while the machine does its thing, sounding like ten squirrels dropping acorns on a hollow log. I will try not to breathe. I’ll hope not to gasp for air. Or heaven forbid, sneeze. No vivid thoughts, even. I might decide, at that moment, that I am not taking the test, that I am the object, the machine is the writer. This will not calm me. In a day or two, I will know if I passed.

This month, or this week, or tomorrow, I will be rejected from a literary magazine or a book contest. Usually, I will submit somewhere else. This month, I will reject someone’s manuscript with a softened heart. As a writer and editor, if I do what writers are supposed to do, and keep on, thinking to myself about Beckett’s “fail better,” I will be rejected far more times than I will actually reject. I will write something nice in the writer’s email, and what I really would like to do is take their address off the manuscript and mail them a personal letter on stationery with a blue Pilot Precise V5 ballpoint, telling them how close they were to being accepted and not to feel like they failed. After all, I’d made it to the end of their piece and had taken time to write that letter. In this way, I will tell.


Writing Illness

English: Detail of plate 4, figure 4 of Pathol...

Pathological Anatomy: Illustrations of the Elementary Forms of Disease. Last fasciculi published in 1838. Depicts Multiple Sclerosis lesions before the disease had been described by Charcot. (Photo credit: Wikipedia)

I was the only one sobbing at Bellevue Literary Review‘s AWP panel.

Poet Hal Sirowitz, who writes honestly and humorously about his experience with Parkinson’s disease, had me crying.

He stood up at the podium with his wife and read in a deadpan voice, sometimes struggling to get out the end of the line.  His wife stood next to him and I didn’t know if it was to help him along with the reading, or to help him stand– or even if he needed or wanted any of these things.  But I guess in this case, needing and wanting really are two different things.  Sirowitz read poems, and it seemed planned that his wife would finish his lines or sometimes she started the lines and he would finish them.  His wife, composed, smiled at his humor.

I chose to sit near the front so I could quickly thank the poetry editor after for publishing my poem in their prior issue, but I ended up staring at the presenters, wiping snot from my upper lip, imagining that they looked at me strangely.  Mortified, I left immediately.

I’ve written two poems about Multiple Sclerosis.  I’ve written essays that I don’t really care for about the disease–essays that feel too self-deprecating or too self-pitying or too removed.  So, I try to work the disease in other ways.  When a peripheral character in a story needs a disease, I give them MS, and then I make them really tired all the time, or I make them walk with a cane, or I make them die.

What else should I do with these characters?  How should I write a protagonist, a mother, who has MS?  What else should be in her life besides her disease and her family?

Bellevue held another panel at AWP: “In Sickness and In Health: Literature at the Intersection of Medicine, Science, and the Arts,” where I teared up, but didn’t sob.

I took notes.

Sure, the title of the panel sounds clinical.  But that was the rub–how something so intensely personal like disease, something that makes itself so much a part of the body that we sometimes don’t even recognize we have it, can steal away the most human aspects of ourselves.  So much time in the panel was discussing how “medical-ese” takes the primal, human, messy parts of disease and sterilizes those parts into vocabulary terms that the patient can’t understand without a medical dictionary.

So I went to the human side when researching the history of MS for this novella.  I am determined to explore it in a way that lets me control its every appearance, though not my character’s.  I suppose that I should be an entirely different being from my character.

I read mostly archival news articles from the 40s through the 70s.  I wanted to know what the public knew about the disease then, to understand how little was understood.

From the Toledo Blade, June 12, 1947:  “Patients suffering from the ‘brutal’ and always fatal disease, multiple sclerosis, are getting an answer to their plea, ‘Why doesn’t someone do something about this disease?'”

I thought about this.  When I was diagnosed, my friend told me it was a “trendy” disease.  As much as I didn’t understand the diagnosis, I didn’t understand what my friend meant.  Benign?  Fashionable?  Cool?  Preferable?

I re-read the line: “brutal and always fatal.”  My great-uncle Tony had MS, and in his time, I wonder, was he devastated in ways I couldn’t know?  The disease isn’t thought of as “fatal” anymore.  Hardly even “brutal”–at least less-so–for people diagnosed today.  Though there are days I might describe it as “brutal” (certainly episodes of vertigo), I’d feel too guilty to use that term.  There are days I don’t feel diseased at all.

From reading his poetry, it’s clear Hal Sirowitz is living his disease–I imagine he feels the steady decline with every one of his senses.  I’m sure he can tell when disease is taking his life from him because he might find something he used to do that he can no longer do.  His poetry tracks disease, treats it as fact, but still prods at the unknowing, bravely looks it in the face.  Even if the face with that disease is his.

The most common word associated with MS in the old news articles is “mysterious.”  And I get that.  Doctors and scientists didn’t know what caused it, how to fix it, how people could be either unable to walk or walking just fine, or how–the scary part, still–to predict its course.  It is mysterious.

Dare I call it like I see it, how it presents itself in my life?  A nuisance?  A ghost?  A threat?

Even though some articles refer to it as “a crippler?”  Because sometimes, it is.

I’ll write into the mystery of it.   And it’s still a mystery to me how to do that…even as I finish this blog post that I wrote to make sense of writing and illness.  Of story and disease.

–a poignant essay by Rafael Campo, “Illness as Muse,” from Bellevue.


Trading Confessions

Last week, a student flopped herself in a swivel chair in my office just before class, to tell me she plagiarized her poem. Her eyes were so charged and black that it was as though she surprised herself when she told me.

I wanted to hug her, to show her that the pressure isn’t that much, that I don’t mean to place an anvil on her, that I won’t check beneath her heavy hands to see if she pressed out the right words.

Three weeks ago, a student told me she was nearly three months pregnant, though I never would have known to look at her. I gave her pickles, decaf chai, unsolicited advice.

I wanted to know what it was to be a pregnant student, to touch my stomach and feel the knowledge growing from behind my belly button.  When I got home, I hugged my boys tighter, wishing I could give my student some definition, some synonym to memorize.

Today, I read a poem from a student, revealing that she was diagnosed with cancer last month. I read it and re-read it and nearly cried. I checked her attendance for the past two months: she had not missed one class. She had lost her hair in the midst of discussions about the concrete, caesuras, diction, imagery.

In my mind, I contrasted my MS diagnosis, attempted comparison, but couldn’t, the only notes I had on the experience were at home, scribbled in a journal given to me by a friend. We will discuss her poem in class, and I will sit hushed, with guilt heavy as fatigue.

How can I grade life as it is just-lived?


Annuities

visualparadox.com

Somewhere, there is a person with my maiden name who has a structured settlement.  I receive her mail– it arrives in express envelopes, making me think it’s something relevant that begs my attention, others come in the form of neon postcards.  They all say the same: Sara Lotze, please call us to collect your structured settlement.  My parents receive multiple phone calls per day and tell the structured settlement companies that Sara Lotze isn’t me, that I’m not receiving any money.   And it’s true, I’m not.

Never mind that my name is spelled with an ‘h.’  Or that my married name is Cedeno.  What if I call these companies to collect?  What if I, Sara Lotze, collect on someone else’s tragedy?  Some sort of pain and suffering settlement? Or a wrongful death lawsuit?  A civil case where I am the plaintiff and am missing my right arm or my nose?  It almost seems as if multiple companies insist that I accept these funds.

Sure, I would have to know Sara Lotze’s SSN at the very least, but can’t I wonder?

Perhaps I am owed some insane amount of money.    My son, John, who asks for his old daycare friends Henry, Jaysen, and Lincoln on a daily basis, could return to the center he bumbled and fell and swung at because the more-than-my-mortgage-payment tuition would no longer be too much to handle.

And I would have time to hole up in my purple study and write.  Expanses of time, because my mom would quit her job at the balmy campus cafe to watch my four-month-old spit and giggle and adore.  I could pay her more than her job where there are no windows for her to gaze from, in the basement of a building that is beautiful outside and on the floors above. Her little legs would carry her, an arm outstretched and dangling a cigarette, far far away from the cafe.

I could cancel classes on the days my ms boggles my thoughts and my speech or the days when I feel like the world is a scary enough place to want to stay home.  I could be the kind of lazy I always wanted to be if I’d had the courage.  Dishes would pile up in my farmer’s sink until I paid someone to come wash them.  I would not shudder to leave the knife from my son’s peanut butter sandwich for longer than a half-hour because I wouldn’t have to clean it.  My husband would pretend I inject the medication that shields my brain like Teflon because he would have a check, a fat check that blames the disease and absolves me of self-destruction.

Maybe, just maybe, I could be Sara Lotze.