Today a specialist asked me if I had a certain personality.
I may have responded with an arch look.
He rephrased the question. “How would you describe yourself? Your personality? ”
I knew where he was going with that line of questioning. He wanted me to confirm his at-a-glance hypothesis that I am a Type A personality. Apparently The Specialist subscribes to the popular theory that Type A personalities are more prone to autoimmune diseases like multiple sclerosis (MS.)
“Has anyone ever told you that you are a control freak?”
He has nothing to gain from this line of reasoning. Think about it. Of the two of us, who is more likely to have a Type A personality: the guy with the medical degree, or the gal with the MFA?
I countered, “I think that’s just blaming the victim.”
I don’t (necessarily) have a bad personality. I just have a bad disease.
The Specialist kept describing the Type A personality. “Do you set goals for yourself?”
“Sure I do. And maybe I’ll accomplish all of those goals in a day, and maybe I’ll only accomplish only one. Or none at all. My body has the final say.”
“So you’ve reached Acceptance.”
Acceptance. I didn’t know what The Specialist would think about that. Acceptance doesn’t carry much of a cachet among Type A personalities.
I ventured, “I don’t know if that’s good.”
Though of course, I do know that it’s good. In my case, Acceptance is reasonable. All my MRI’s in the past four years have come back showing no new lesions. It’s appropriate to reach Acceptance when you’re on a drug that actually works.
The Specialist was happy to hear about the efficacy of the drug, even though he couldn’t find “daclizumab” or “DAC HYP” on his portable information device. (I probably spelled it all wrong.) He seemed more frustrated that he couldn’t shoehorn my personality into his Type A hypothesis. He kept trying. He listed high achievers who had autoimmune diseases. Montel Williams’ MS. Michael J. Fox’s Parkinsons.
I could think of one other thing these guys had in common, besides autoimmune diseases. “These guys are both celebrities. You kind of have to be a high achiever to become a celebrity.”
Whereas, you absolutely don’t have to be a high achiever to become a patient with MS. It’s just not that simple. I know plenty of high achievers. And most of them are not celebrities. Most of them don’t have an autoimmune disease, either. Nor do they deserve one.
I don’t deserve one, either.
“Do you think you used to have a Type A personality, back before your diagnosis?”
Back before my diagnosis, I’d majored in philosophy. What kind of Type A personality would be stupid enough to major in a thing like that?
The kind of Type A personality who thought English majors weren’t thinking hard enough.
Have it your way, Specialist.
He proposed, “Some people think meditation could be helpful for people with multiple sclerosis.”
So now he’s “some people.”
“Meditation could be helpful for anyone.”
I’m not making a very good case for my being a Type other than A.
The Specialist is an Ear, Nose, Throat guy.
He finally got around to asking me to stick out my tongue.
“You know, thousands of years of Chinese medicine has taught them to diagnose an entire person with one glimpse of the tongue.”
I had my tongue sticking out, so I couldn’t reply. And anyway, I didn’t think of a good comeback until after I left the examining room. Here it is: “For hundreds of years, Gypsies have said they can see a person’s fate with one glimpse of the palm.” You don’t see me rushing out to consult any gypsy. I consulted my half-Chinese husband instead. My half-Chinese husband said my sharp tongue was one of the first qualities he loved about me.
So maybe there is a perk to being Type A, after all.
The Specialist had said, “Things happen for a reason.”
I agree with half of that statement. Things happen. But If you’re going to look for a reason, don’t stick your tongue out at a Chinese guy, and thrust your palm onto a gypsy’s lap. That’s just silly. None of us are so special we should waste our breath whining, “why me?”
I may have a strong personality, but I don’t think it’s so strong it could cause a disease.
While I was waiting for The Specialist, I was reading Population 485, a delightful book by a Michael Perry, a volunteer fireman. He writes, “We are creatures of myth, hungry for metaphor and allegory, but most of all, hungry for sense.”
Sometimes our hunger for sense has us gobbling up nonsense.
Perry writes, “Surely, we tell ourselves, we can’t die just because we hit a patch of pebbles on a curve.”
But as Perry clearly illustrates, we can and we do.
We identify with our problems, with our illness, with our fate, instead of detaching, and researching cause and effect.
I think I’ve figured out why I contracted MS. It had nothing to do with my personality, and everything to do with my intestinal parasites.
Surprised? So was I.
It’s a wild, random world. (Is this the observation of a Type A control freak?)
Archive for the ‘Diagnosis’ category
Today a specialist asked me if I had a certain personality.
Sixteen years ago, I coerced my husband into doing something crazy. I had just come back from a doctor’s appointment that hadn’t gone at all well.
When I arrived at our shack, I was crying like a baby. I mean this quite literally. I was crying so hard, I could not form a word.
We both found my speechless sobs distressing. My sweet husband’s dark eyes were widening with horror.
Just a few months earlier, his mother had been diagnosed with terminal cancer. He’d already learned about the flipside of love.
My husband loved me. I now knew he was going to lose me, was losing me already, one little brain lesion, one little spinal cord lesion, at a time.
Until that day, I hadn’t heard of multiple sclerosis. I didn’t know for certain if an MS diagnosis was better than a terminal cancer diagnosis, or far, far worse.
I wanted it to be better. Far better. As much for my husband’s sake as for my own. I wanted to comfort the poor guy, who was standing there, unflinching, receptive, gathering his strength to endure the unendurable, in whatever form it would turn out to take. I wanted to tell him, the love of my life, “I’m not going to die.”
Which was, of course, both the immediate truth and a big fat lie. I wanted to say it anyway, but I was blubbering so hard, even I couldn’t get a word in edgewise.
I knew MS wasn’t terminal. The doctors had been very clear on that point. I was going to die with MS, but not necessarily of MS. When I eventually die, it will most likely be due to some other cause.
But to deliver even this cold comfort, I would have to quit bawling. I would have to pull myself together. I would have to form some words.
We had the same idea at the same time.
My husband handed me a pen. The man can be counted on to carry a pen. And that’s when it occurred to me that I didn’t have to do the explaining. As he rooted through our rotting shack for a blank piece of paper, I rooted through my cluttered pocketbook for the wrinkled MS Society brochure.
Then we made our exchange—a sheet of blank paper for a printed pamphlet.
I wrote on the sheet of blank paper, “I’m not going to die.” When I looked up, he was scanning the pamphlet.
The look we exchanged said it all. We were in deep trouble.
Oddly enough, I didn’t sob harder.
Already, I started to feel better. The good news was, I wasn’t in it alone. And yeah, that was also the bad news. But as bad news went, it was at least bearable bad news. For me. I couldn’t imagine how it could possibly be bearable bad news for my husband.
Lucky for me, my husband exceeds the boundaries of my imagination.
The man was capable of deciphering the pamphlet. More so than I was. I have a head for nuance. I have no head for statistics. The nuance of the pamphlet was ominous. It conveyed this the-glass-is-an eighth-full kind of optimism that I found highly suspect.
My husband has a head for nuance, but he also has a head for statistics. He could at least calculate the specific inverse of an eighth full. He isn’t bullied by statistics. Conjecture outright bores him. The guy has a constitutional aversion to freaking out about the future. This quality has served us very well. Which is not to say the diagnosis did not scare the hell of him, out of us.
My husband and I had always intended to have a kid “later.” “Later” meant after we’d both finished grad school. “Later” meant after we’d upgraded our living quarters from a $375/month shack.
The MS Society pamphlet blew apart our concept of “later.” We were just kids. To us, “later” had always meant, kind of like now, but slightly better. But even according to the optimistic pamphlet, “later” meant, kind of like now, but an indeterminate fraction worse. And then worse still. And then worse still.
As I saw it, this meant only one thing. We couldn’t count on “later.” If we wanted a kid, we had to have one immediately. Like, while I could still push a carriage. Like, while I could at least lift a baby to my breast.
Gentle reader, “later” turned out to be a whole lot rosier than my mildest conjectures.
Our son is fifteen now. The child has never spent so much as a night in a shack. (Wait ‘til grad school, kiddo.)
We recently took our healthy son with us to Iowa City for the 75th Anniversary of The Iowa Writer’s Workshop. We gave him a tour of all the places we’d lived while I’d studied there, from the crazy apartment on North Dodge in the back of Hilltop Tavern, to the farmhouse in Swisher, to the metal house on G Street, to that sorry, ramshackle shack.
My husband took a picture. He said, “I can’t believe that place is still standing. I underestimated so many things about the world.”
So did I, my love. So did I.
Happy day! The verdict is in. Multiple Sclerosis (MS) is not caused by stress.
The NIH (National Institutes of Health) has been following two enormous groups of nurses over two massive spans of time, and they have found no link whatsoever between traumatic life events and the onset of multiple sclerosis.
I know I sound a bit overblown. But that doesn’t mean that I am exaggerating. I’m not even over-exaggerating (a distinction we often make in my larger-than-life family-of-origin.)
The two groups studied really were enormous: 121,700 nurses in Study One, and 16,671 nurses in Study 2.
The two time spans really were massive, maybe not massive in geologic time, but certainly massive in biologic time. The first group has been followed since 1976 (Number 1 song of ’75: Silly Love Songs by Paul McCartney and Wings.) The second group has been followed since 1989. (Number 1 song of ’89: Look Away, by Chicago. Was I asleep that year?)
The nurses in both enormous groups were asked to complete a questionairre about their personal history of stressful events. After they handed in their questionnaires, they went about their normal lives. A minority of the nurses who completed this questionnaire would later find that their normal lives would be disrupted by MS.
When investigators compared the answers from the group of nurses who were destined to develop MS with the answers from the nurses who were destined to remain healthy, they found no significant difference in self-reported levels of stress and/or stressful events.
I feel so vindicated.
There are so many subtle and not-so-subtle ways of blaming of victim. With my MS diagnosis came the injunction to avoid stress. I don’t necessarily think that was an entirely bad piece of advice, although, under the circumstances, it wasn’t particularly easy advice to follow. No one ever outright accussed me of creating my disease state because I’d been under too much stress. That was entirely my own inference. I’ve been blaming myself ever since.
Since my diagnosis, I have made it a priority to avoid stress. I’ve done plenty of yoga. Not enough meditation. When I’ve gotten pissed off, I have, on occasion, actually slowed down long enough to count to ten. I am, without a doubt, a happier, more even-tempered person than I was before my diagnosis. I might not have made such an effort had I not believed it would contribute to my health.
So I can’t say I have a quarrel with avoiding stress. I have a quarrel with the notion that a person with MS has a stronger obligation to finesse stress than a person without MS.
I would like to propose that there is something intrinsically wrong with the assumption that multiple sclerosis is a flawed emotional response, rather than a flawed immune response.
I’ve had MS since at least 1988 (Faith, George Michael). I am a study of one. I am lacking a control group. As both investigator and subject of my own disease, I have had a “massive” amount of time to explore the complex interplay between multipe sclerosis and stress. For what it’s worth, this is what I have observed. Stress is not the only response that can trigger MS symptoms. Any old emotion will do. Joy, for instance. I will never forget the excruciating pain that shot through my legs when I learned that a family friend would be lending us his apartment in Paris.
If I want to eliminate pain from my life, does that mean I ought to eliminate joy?
I don’t think so.
I’d like to propose a paradigm shift.
Let’s stop fussing over eliminating stress. Let’s focus, instead, on eliminating MS.
My neurogenic pain has always been a mystery to me.
I first felt a tingly sensation in my right foot during stop-and-go traffic in rush hour. I attributed the unpleasant feeling to an ill-fitting shoe. Except… my shoe fit fine. And why was I tingly only in my right foot? Why not my left? Who ever heard of going all tingly from pumping the gas and the brake?
I asked these questions of my boss, because my boss used to be a nurse. I figured she’d know what it meant. In retrospect, she probably did know what it meant. That must have been why she fired me.
The next time I asked about a tingly sensation, the story was even weirder. My fiancée had been reading me poetry in the bath, when suddenly that tingly sensation shot right up to my bra line. When I tried to get out of the bath, I dropped like a rag doll. For no apparent reason, I couldn’t walk. My guy had to help me to bed. In the morning, I was just fine. Why had I been tingly in the bathtub? Why was there that scary moment when I couldn’t walk?
The community health center doctor countered with questions of his own. Was the bath warm?
Of course the bath was warm.
Do you have insurance?
Was I in a community health center? Of course I didn’t have insurance. I’d just been fired.
The doctor wrote me a prescription for B vitamins. “I’m going to be very careful with how I write this up. I’m going to say you have a vitamin deficiency. You don’t want a pre-existing condition. When you do get a job with insurance, you’ll want to go to a neurologist.”
Did I want to go to a neurologist?
I guess I didn’t. That discussion took place in 1990. Even with health insurance, I didn’t make it to a neurologist until 1995. In the intervening years the funky experiences with pins-and-needles sensations kept piling up. There was no apparent explanation for my pain. All I knew for sure was that it wasn’t caused by a vitamin deficiency. Taking B vitamins hadn’t done a thing.
What drove me to finally see a neurologist? Sheer curiosity. It was weird, just plain downright weird, to experience pain without any apparent cause.
Once again, I told my story. This time, I would get an explanation in return. There were measurements I’d never dreamed of that revealed symptoms I thought could never be quantified. The pain I experienced in my legs did have a source. Multiple sources. My MRI showed lesions in my brain. My lumbar puncture showed lesions in my spinal chord. Oddly enough, the doctors could tell I felt tingling in my legs because of what I couldn’t feel; vibrations from a tuning fork.
It was all very validating, these proofs my pain was real. Not so long ago, a person like me would have been labeled a hysteric. Instead of being labeled a hysteric, I was diagnosed with multiple sclerosis. That’s progress. But at the end of the day, and more often than not, at the beginning and middle of the day as well, I am in just as much pain as my predecessors, the hysterics.
I’ve had enough. I am ready for more progress. Science has determined that my pain is real… by now science ought to find a way to get rid of it.
A few weeks ago, I happened to click my way to a four minute TED talk in which a researcher proposed to do exactly that. http://blog.ted.com/2008/03/25/christopher_dec/
Christopher de Charms uses the MRI to do more than document the existence of pain; he has his clients climb in the scanner with virtual reality goggles, and interact with their pain in real time. They can select the portion of their brain lighting up with chronic pain; and apparently they can be trained to release their own opiates to counteract it. By controlling their brain, they control their pain. DeCharms reports a 44-64% decrease in chronic pain patients. I want in, unless that means I will be decreased by 44-64%.
There were many issues a four minute TED talk can’t cover. I wondered if seeing a portion of my brain light up with pain would in fact make my pain more pronounced. And once I did see which part of my brain was active when I was in pain, how, exactly, would I release my opiates to sooth things over?
To pursue the matter further, I ordered and read DeCharms1998 book, Two Views of Mind: Abhidharma and Brain Science. In each chapter, DeCharms chats with Tibetan Buddhist teachers to deepen his understanding of the mind in Buddhist philosophy. I can see how his research of their study of mind led him to attempt to transform the Western study of the brain. Buddhism is based on systematic observation of the subjective; for generations, Buddhists have been observing the mind from the inside. As a practitioner of western science, DeCharms has access to the technology to visually access the inside of the brain; he recognizes that the Buddhists have the skills to know what to do once you’re there. From what I’ve learned in DeCharms’ TED talk, this appears to have been a fruitful collaboration.
I will be the first to admit that the pain I experience is not at all useful. It’s a misfire. My brain (or my spinal chord) is screeching PAIN PAIN PAIN. I’d love to teach it to sing a different tune. If crawling inside an MRI machine while wearing a pair of virtual reality glasses can do that, I want to give it a try. I value western medicine for proving my pain is real. I’m more than willing to value eastern medicine if it can help me make that pain go away.
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.
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
Street Shadows: A Memoir of Race, Rebellion and Redemption by Jerald Walker
My review: http://www.goodreads.com/review/show/164030784
amazon link: http://www.amazon.com/Street-Shadows-Memoir-Rebellion-Redemption/dp/0553807552/ref=sr_1_1?s=books&ie=UTF8&qid=1304004405&sr=1-1
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.