Month: January 2011

Expiration Date

It took me years of hemming and hawing and handwringing to get around to applying for a handicapped parking decal.

Me? Handicapped? Nah.

I wasn’t handicapped. I just had… moments. Moments when my legs melted from beneath me. Moments when my husband took on the dual role of valet-parking-attendant/living-human-crutch, and had to juggle parking the wife and parking the car. A handicapped parking permit would have made those moments a lot easier. For him.

But for me? I wasn’t handicapped. Those moments were flukes. Was there some sort of Momentarily Handicapped Decal? I’d take one of them. I’d leave the real handicapped spots for those handicapped people.

Over the years, the flukes piled up. Most memorably, there was the Wisdom Tooth Fluke. We had planned for my husband to get IV valium that morning. We hadn’t planned for the ice storm. We hadn’t planned for my legs to give out the moment my husband draped his arm around me. The dentist had to request two wheelchairs, and two orderlies, to escort us both out. We were wheeled as far as the exit, where we sat side-by-side and stared across a glassy parking lot of solid ice. Our car was parked somewhere out in the back. Yep.

The dentist had been generous with his valium. My husband was generous with his praise of the orderlies, even as they informed us we had reached the end of the line.

Fine.

That was a fluke. My husband couldn’t lose his wisdom teeth twice, right?

But fluke followed fluke. Too many flukes, and you’ve got yourself a trend. I applied for the decal. I wrote a long, tortured, multiparagraph treatise on how I would only use the decal for good, never for evil, how I would never park in a handicapped spot on my good days, just because the spot was there and I was already late for the movie and there were all those other handicapped spots open if any more-deserving handicapped-er driver happened to need one. Or something to that effect.

The day arrived when the decal arrived in the mail. My six year old son watched me pull the thing out of the envelope.

“Good news!” I cried. “I got a handicapped parking decal.”

My eyes went to the expiration date.

LIFETIME

That meant I would never have to apply for another handicapped decal.

LIFETIME

That meant I was really and truly handicapped for life.

My son’s eyes had gone wide. He stood transfixed on the staircase, studying me. “Are you sure that’s good news, Mommy?”

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Visualization

No matter how gracefully I walk into a neurologist’s office for an evaluation, the dreaded heel-to-toe test invariably punctures my façade.

As soon as I place one heel directly in front of the other foot, I start to sway. My arms float up, like a gymnast…a gymnast on the Titanic. I tilt toward the left. I regain my balance…for one brief hopeful moment. I tilt toward the right. My legs start to buckle. Then twist.

It’s all very suspenseful.

Inside my atrophied little brain, I’m reminding myself of all these tricks I’ve been taught at yoga. I press into all four corners of my front foot. I root down into my tail-bone. I lengthen my spine. Oh yes. I breathe.

I lift my back foot. Gently swing it around my front foot. Start to set it down…

Oops.

Not again.

I tilt toward the right. A little too far. I break my fall…by breaking out of heel-to-toe.

Inside my atrophied little brain, I’m thinking that losing my balance is all my fault. I wasn’t…yogic enough. I didn’t make the right mind-body connection. Of course! Mind-body connection! Why didn’t I think of it sooner? What I should have done was visualize myself walking down the hallway. Visualization. That’s the ticket.

I request another try.

This request typically inspires a panic.

“Oh, no, no, no. That’s fine. You don’t have to do that one over. I’ve seen enough.” And I wind up feeling like an out-of-work actor who has just asked for a re-try on a crappy audition.

The first time I took the heel-to-toe test, I made a lame joke. “I guess my tightrope walking days are done.” The joke fell flat. My stand-up comedian days were dead-on-arrival. Fine. I don’t want to play the role of the wisecracking patient with multiple sclerosis. I don’t want to be in that sitcom. Or even on that channel. I’d rather be on the yoga channel, floating two feet above the gleaming wooden floor without even noticing, a tiny, enigmatic smile on my placid face.

Yeah, right.

Has my practice of yoga been based on unrealistic expectations? Or has my practice of yoga been the only reason I can balance at all? Without yoga, would I be in a wheelchair by now?

I cannot say. I don’t have a control group; a clone or a twin sister with multiple sclerosis who thinks yoga is a complete waste of time.

What I can say is that my expectations for my balance are consistently higher than my performance in the heel-to-toe test.

My performance in my normal daily routine can be fairly convincing. Contrary to what my blog posts may have you believe, I pass for a relatively fit healthy woman at least 90% of the time. In public. Before 8 pm. But still. I’ve got a good façade going. I’m fond of it. I don’t want that façade punctured. Which is why I don’t like the heel-to-toe test. Not one bit.

I never thought I could ever meet a person who could make my objections to the dreaded heel-to-toe test seem petty. That was before I met Dr. X.

I wasn’t supposed to be meeting Dr. X in the first place. My appointment was with Dr. Y. It so happened that Dr. Y was running behind, so she sent in a resident: a black man in a wheelchair. To see me: a white woman who felt irked every time she was asked to take the dreaded…never mind.

When Dr. X had me take the dreaded heel-to-toe test, I failed it, as usual. But this time, failing the heel-to-toe test felt fairly privileged. At least I wasn’t stuck in a wheelchair. Without a doubt, Dr. X would gladly trade places with me in a flash.

Or would he? Was Dr. X’s life really all that bad? Is mobility, or lack thereof, the decisive factor in anyone’s quality of life?

As we chatted, I came to see that Dr. X’s life was actually pretty good. He was nearly done with medical school. He was on the verge of a lucrative career. He had a job lined up for him in his home state, where he could live near his beloved family of origin. His upcoming move wasn’t all he was looking forward to; he was getting married in a few weeks. His honeymoon plans included snorkeling in the Caribbean.

My atrophied little brain thought it appropriate to mention a book I’d just read, The Body Has a Mind of Its Own. I enthused about the data showing that visualization could improve sports performance, and shared my plans to visualize walking down my staircase without using the banister.

Dr. X’s response? “Use the banister.”

I take it Dr. X doesn’t visualize leaping out of his wheelchair. Or passing heel-to-toe tests. Dr. X is more focused on what his brain and his body can actually do. I’ll be the first to concede, his brain and his body can do quite a lot. So much for visualization. Maybe there’s something to be said for looking around, and seeing the world clearly. The world is a beautiful place, from any perspective. I bet the world looks spectacularly beautiful while snorkeling in the Caribbean.

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MS Mermaid

My son requested that I tell you the story of what happened the last time we were in Hanauma Bay:

Once upon a time, on an island not so very far from the equator, Mermaid opened her sea blue eyes and saw she was in trouble.

Earlier that morning, Mermaid had grown restless as her husband, Landman, and their son, Halfland, fumbled around the coral in their rented flippers. She shot off after a brilliant green parrotfish, leaving Landman and Halfland to doggie paddle in the shallows of the bay.

Hour after hour, Mermaid frolicked with bright and beautiful fish. She witnessed many wonders. But as time went on, more and more blubbery white Surface Creatures came crashing across the coral reef. As the bay grew crowded with  Surface Creatures, Mermaid grew restless yet again. She missed Landman and Halfland. She wanted to be with them, even if that meant climbing out onto the sand.

Mermaid was as clumsy on the silver sand as Landman and Halfland were clumsy in the water. Mermaid fumbled as far as a little palm tree, and then plopped down to shelter in its meager shade.

Mermaids never nap. But on this day, Mermaid’s frolicks must have worn her out. When Mermaid awoke, she was no longer lying beneath the slender shadow of the little palm tree. The shadow had shifted.

Mermaid was no longer sheltered from the Sun. And Mermaid was no longer alone.

A group of  Shade Seekers from the Far East were noisily unfolding their straw mats along the new angle of the palm tree’s slender shadow, chatting away as if Mermaid did not exist.

Mermaid did not understand the Shade Seekers’ culture, or the Shade Seekers’ language, but she had to be grateful for their bizzare proximity, and their incomprehensible chatter. Had they not been so close, had they had not been so loud, the Shade Seekers might have not have waked her. Had Mermaid remained asleep beneath the Sun, she may have napped her way smack into oblivion.

You see, all mermaids’ powers melt away in the heat.

Mermaid looked down at her lovely legs. She knew the heat of the Sun had rendered them as useless as a mannikin’s legs.

Mermaid gazed longingly at the sparkling sea; if she could only make it back, she would be safe from the heat of the Sun.

Mermaid turned to the Shade Seekers. The Shade Seekers did not meet her sea blue eyes. You see, Shade Seekers do not believe in mermaids. These simply pretended Mermaid did not exist. And even if Mermaid were to somehow convince the Shade Seekers that she did indeed exist, she still had no common language to explain her predicament.

All the while, the Sun beat down relentlessly. If Mermaid didn’t act soon, she’d lose control of more than just her legs; her sea blue eyes would cease to see.

Mermaid was feeling desperate. Her lovely legs couldn’t take her to the water. The Shade Seekers wouldn’t take her. Mermaid decided on a course of action. Since she could not walk to the water, she would have to roll there.

I will tell you a secret about mermaids. Mermaids are like you and me. They can not abide to lose their dignity.

Mermaid imagined that the Shade Seekers would start seeing mermaids as soon as they saw one rolling in the sand. That would give those Shade Seekers something to talk about.

Just then, Mermaid heard two beloved voices over the din of the Shade Seekers’ chatter.

“Mermaid!”

“Mommy!”

Landman and Halfland were running up the beach toward their lost Mermaid. They were so happy to see Mermaid, they forgot to be cross with her for swimming away. They understood immediately that Mermaid wouldn’t be going anywhere, not without their help.

Now, this was no ordinary bay, but rather, the crater of an eroded volcano, one that had sunk so low that the sea could sneak inside. Landman proposed he carry Mermaid to shelter on the crater’s rim.

The crater’s rim was a long way up. Mermaid wanted nothing more than to return to the water, and to her natural form.

Landman loved Mermaid. Landman wanted nothing more than for Mermaid to be whole again. Instead of carrying Mermaid to the crater’s rim, he carried her back into the water, and released her alongside the battered coral reef.

As the family expected, the ocean worked its magic on Mermaid. She was soon swimming as though she had never been pinned by the heat of the Sun. Landman and Halfland were happy to see their Mermaid restored, yet the entrance to the path to crater rim remained a great distance away. Mermaid refused to be carried there, and they all three doubted she could walk.

Halfland proposed they all swim toward the entrance. But Mermaid knew swimming would not be much fun for the boy. She urged Halfland and Landman to walk there, instead.

After all that had happened, Halfland and Landman were reluctant to leave Mermaid. But Mermaid had learned her lesson. From now on, Mermaid would not be distracted, no matter how colorful the fish. She would keep her sea blue eyes on Landman and Halfman, for those two were more precious to her than all the fish in the sea.

Landman and Halfland sloshed back to the shore, and Mermaid swam along in the sea. But they were still together, all three. They proceeded in parallel toward the path to the crater rim; Landman and Halfland walking on the beach, and Mermaid swimming in the bay. Mermaid’s gaze did indeed remain fixed upon Landman and Halfland. Those two were the most soothing sight her sea blue eyes could ever see.

Not even the Shade Seekers can tell you how Landman and Halfland managed to get their Mermaid to shelter on the crater’s rim, or how Landman, Mermaid, and Halfland have managed to stay together, happily ever after. There is much about a mermaid that must remain a mystery.

Bad Brain Day

My son loped downstairs looking all mopey. “I just took a bunch of IQ tests. They all had different scores.”

I was feeling a little mopey, myself.

As it happened, I’d just run across a bunch of my MRI reports. The reports all had the same results, which meant the MS has stayed in remission.

Stable multiple sclerosis with moderate lesion load and moderate brain atrophy.

Yep. Most days, that’s my idea of good news. But maybe I was a little tired from a morning of yoga. Or maybe I was just hungry. Whatever the reason, as I sprinkled garam masala over paneer cubes, I found myself asking the forbidden question, “What would I be like without moderate brain atrophy?”

My son suggested I write this blog post. “You should fill it with misspellings and everyone will get all worried.”

Nd thn whe kraked up laffin.

headshot

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The Immortal Life of Henrietta Lacks Asks the Wrong Questions

Rebecca Skloot’s painstakingly researched, thought provoking book, The Immortal Life of Henrietta Lacks, is the engaging story of a young white science writer who makes it her mission to humanize the patient behind the HeLa cells, a strain of apparently immortal cancer cells with a Zelig-like existence.

The HeLa cells have made and lost researchers millions of dollars. They’ve been instrumental in countless medical triumphs, and they’ve corrupted test results the world over. They’ve been shot into outer space, and into the arms of powerless prisoners. The HeLa cells originated in a woman who was never asked if she would agree to be a tissue donor, and who would never live to see any of the spectacular consequences of that surreptitious biopsy.

Henrietta Lacks was a young mother of five who felt a painful knot in her womb, and sought free medical care in the “colored” section of Johns Hopkins Hospital in 1951 Baltimore, Maryland. That knot was one of many fast growing tumors. The doctors at Johns Hopkins followed the treatment protocol of the day, and met with no success. The researchers at Johns Hopkins, however, met with great success. Their unpatented protocol for cell preservation would prove to create an ideal, indestructible new home for those aggressive tumor cells.

In the interest of promoting scientific progress, the Johns Hopkins researchers shared the HeLa cells, sending them out, without any motive of personal gain, to any scientist who requested them. As it happened, requests would flood in from all over the world.

Henrietta’s identity was, perhaps inevitably, certainly unforgivably, leaked. When news got back to the Lacks family, they were not as enthusiastic as the John Hopkins researchers about the notion of forfeiting personal gain for gains to society. They were all still smarting from their loss.

Rebecca Skloot chooses to open her book with a moving reflection by Henrietta’s daughter, Deborah, which reads, in part:
“But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors. Don’t make no sense. People got rich off my mother without us even knowin about then takin her cells, now we don’t get a dime…But I don’t got it in me to fight. I just want to know who my mother was. ”

Skloot does a fine job of telling us who Deborah’s mother was, and an even finer job of bringing Deborah Lacks to life on the page. But I think she does society a disservice by championing the Lacks children’s supposed right to profit from the cancer cells that killed their mother.

Why not  instead champion the right of every American to access to affordable medical care?

And why not acknowledge that the medical advances we’ve reached so far are due primarily to the innovations of brilliant doctors, scientists and researchers, and almost incidentally to the donors who provide the raw material?

As a donor myself, I am far more interested in promoting lasting scientific advances to the best of my limited abilities than I am in obtaining a quick buck. If every donor thought they were entitled to monetary gain, medical progress would freeze to a halt. As a person with multiple sclerosis, and moreover, as a person with a child in this world, I stand to lose a quite a lot if that were to happen.

Did an injustice take place at Johns Hopkins in 1951? You bet. The existence of separate sections for whites and colored was an injustice. I’m not sure I would go so far as to say that taking Henrietta’s cells without her permission was an injustice. I’d say it was a discourtesy. Those cells were doing their level best to kill her, after all. Henrietta Lacks was getting up-to-date medical care free of charge. If she had been asked for her cells as a form of payment, she could have had the opportunity to accept the treatment with a bit of dignity, knowing she was giving something of value in return. No one, in 1951, had any idea just how valuable those cells would turn out to be. Yet those cells would have had no value whatsoever if not for the innovations of Johns Hopkins researchers. Had they been turned over to the Lacks family, the HeLa cells would have been as valuable as nail clippings. Let’s not forget that.

The cover paragraph clearly intends to stoke outrage, and maybe not so incidentally, to sell a bunch of books:
“Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multi-million dollar industry. More than twenty years later, her children found out. Their lives would never be the same.”

The Lacks children do bear considerable pain. Ms. Skloot’s own research points to the obvious party responsible for that pain, and it isn’t any researcher with deep pockets at Johns Hopkins.

If they want to locate a guilty party, they should look no further than their dad.

If anyone can claim credit for actively creating the HeLa cancer cells, it would have to be Henrietta’s first cousin and husband, David Lacks. David Lacks habitually cheated on Henrietta, infecting her with the multiple strains of syphilis that led to her cervical cancer and her untimely death.

David Lacks disregarded Henrietta’s dying plea that he care for their children. He left those children with a woman who beat them and starved them. This woman was particularly cruel to the youngest, Zakariyya. She would leave him bound in tight knots in their basement for hours at a time. Is it any wonder Zakariyya would later kill a man?

I don’t disagree that the Lacks children have suffered over the HeLa cells. But much of their suffering was caused by ignorance. They thought their actual mother has been cut up in pieces, squeezed out of syringes, blown up in nuclear tests, shot into space, and cloned into rat-women. Naturally, they got a bit upset. They figured somebody’s making big money on their eternally suffering mother, and that they deserve a cut.

For me, the most poignant scene of the book occurs when Ms. Skloot takes two of Henrietta’s children, Deborah and Zakariyya, to meet Christoph Lengauer, a researcher at Johns Hopkins. Lengauer shows them a freezer full of HeLa cells, and invites them to hold a HeLa vial, and then to inspect some HeLa cells under a microscope. Here we see how, even after extensive dealings with Ms. Skloot, there is still so little Deborah and Zakariyya actually understand. Christoph spends a half hour drawing diagrams and explaining basic cell biology. He explains DNA. Deborah is relieved. She thought she’d be cursed with immortality.  “So we don’t have the thing that made her cells grow forever? Now you tell me, after all those years!”

Christoph suggests that Henrietta’s heirs should get the money from the research. He points out that ‘when oil is found on a person’s property, it doesn’t automatically belong to them, but they do get a portion of the profits.’

I don’t think the two situations compare. When oil is extracted from a person’s property, the extraction harms the property value.  Without some compensation, the owner suffers a loss. Whereas when cancer cells are extracted from a person’s body, the loss of those cells is ultimately the patient’s gain.

Though I differ from  Christoph’s point of view, I very much admire his actions. As I see it, the Lacks children deserved…exactly what he gave them. They deserve to live in a world where they are treated with respect. They deserve as much information about their mother’s cells as they can possibly understand. But do they deserve a percentage of the profits from every HeLa experiment that went right? If so, should they reach into their pockets for the hundreds of experiments contaminated with HeLa cells that went wrong? I don’t think so.

While the book itself charmed me, the afterword scared me. Apparently, “there are a growing number of activists—ethicists, lawyers, doctors and patients—arguing cases and pushing for new regulations that would grant people the right to control their own tissues.”

Here’s my problem with that: after living over twenty years with multiple sclerosis, I can tell you that as much as I would like the right to control my own tissues, I have made the painful discovery that my tissues have a mind of their own. Without medical intervention, my T-cells would continue to attack the cells in my central nervous system, and I’d be out of luck.

Maybe these people complaining about their rights are still healthy. I have news for them. “Their own tissues” are going to betray them some day. And where’s the first place they will turn? They won’t turn to their lawyer. They will turn to their doctor.

Patient/Doctor Etiquette

Yesterday, I waited forty minutes to see a specialist. I didn’t particularly mind. I was ten minutes late, to start with. I had my Kindle with me. I was fine.

Finally, the specialist breezes in and asks, “How are you feeling?”

He sit down across from me, eye level.

As I open my mouth to answer him, the specialist breaks eye contact. He swivels his chair to face his computer, and begins to read my medical record. I continue speaking, but now to one side of his head.

How am I feeling?

I am feeling like I no longer have the specialist’s full attention.

When my kid pulls a stunt like that, I scold him. “Look at me while I’m talking to you.”

But I’m not the mother, here. I’m the patient. I follow the requisite etiquette.

I rattle off my current symptoms as the specialist reads up on my past symptoms. As I’m talking, I feel like I’m competing with my own history. I am no longer giving the specialist my full attention. Half of me is already planning to find a better doctor, a doctor who listens.

It only occurs to me later that I could have been a better patient, a patient who waits as the doctor is reading, instead of a patient who mindlessly speaks on cue.

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MacGuffin

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

http://www.amazon.com/gp/product/0312428537/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=1932416609&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=06C72H4WC8PNVS5KD39V

Children’s Hospital by Chris Adrian

http://www.amazon.com/Childrens-Hospital-Chris-Adrian/dp/1932416609

Gob’s Grief: A Novel by Chris Adrian

http://www.amazon.com/Gobs-Grief-Novel-Chris-Adrian/dp/0375726241/ref=sr_1_1?ie=UTF8&s=books&qid=1295041180&sr=1-1

The Testament of Yves Gundron by Emily Barton

http://www.amazon.com/Testament-Yves-Gundron-Emily-Barton/dp/074341148X

Brookland: A Novel by Emily Barton

http://www.amazon.com/Brookland-Novel-Emily-Barton/dp/0374116903

Juniper Tree Burning by Goldberry Long

http://www.amazon.com/Juniper-Tree-Burning-Goldberry-Long/dp/0743202031

Living With Saints by Mary O’Connell

http://www.amazon.com/s/ref=nb_sb_ss_i_0_14?url=search-alias%3Dstripbooks&field-keywords=mary+o%27connell&sprefix=mary+o%27connell

The Invisible Bridge by Julie Orringer

http://www.amazon.com/s/ref=nb_sb_ss_i_1_16?url=search-alias%3Dstripbooks&field-keywords=invisible+bridge&sprefix=invisible+bridge

Dear Paramount Pictures by Iqbal Pittalwala

http://www.amazon.com/Dear-Paramount-Pictures-Iqbal-Pittalwala/dp/0870744755

The Mysterious Benedict Society Series by Trenton Lee Stewart

http://www.amazon.com/s/ref=nb_sb_ss_i_3_51?url=search-alias%3Dstripbooks&field-keywords=trenton+lee+stewart+the+mysterious+benedict+society&sprefix=trenton+lee+stewart+the+mysterious+benedict+society

The Lonely Polygamist by Bradley Udall

http://www.amazon.com/gp/product/0393062627/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=0375719180&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0RWNERVJNHXDGTQV64FW

The Miracle Life of Edgar Mint by Bradley Udall

http://www.amazon.com/Miracle-Life-Edgar-Mint-Novel/dp/0375719180

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

http://www.amazon.com/Women-Who-Win-Female-Athletes/dp/1580052002/ref=ntt_at_ep_dpi_1

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.

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Commuter Drag

IMG_4232I am commuting today to the NIH for my monthly dose of MS medication. Look around the airport. You won’t pick me out. I am streamlined, like every serious commuter. I know which security line is actually the shorter one. I know the latest TSA regulations. I don’t flinch at the full body scanner. My boots are easily unzipped.
My red Chrome messenger bag is a red herring. I haven’t straddled a bicycle in over a year. Not since I kept falling off. But I can look like I still ride a bike. I can pass, at least for the outgoing flight.
I am not the one fumbling with her shoelaces, or the one in the wheelchair. I am not the one in that golfcart-like vehicle. I am not the one boarding the tram.
I am the one strutting to the gate.
I am not the one on the people mover. I am not the one on the elevator.
Whenever possible, I am not the one on the escalator. Whenever possible, I am the one on the stairs.
I am not the one sitting in the handicapped row.
I am not the one being offered the opportunity to pre-board.
I am the one who doesn’t look up as boarding is announced, who continues writing her notes by hand. No one needs to know I am a creature with brain shrinkage. That I’ve left my computer behind in too many taxis, too many times.
No one needs to know that on the way back, I may just be the one in the wheelchair, or the one in the golf-cart like vehicle. I may just give in and take the tram. I might take the elevator. I might accept an offer to preboard.
I am one of you. Until I’m not. Then I am of one them.
I am one of all of us. We each carry baggage. We each carry pain. Sometimes it’s visible. Sometimes it’s not.

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The Cold Keeps the Riff-Raff Out

IMG_9548I probably should not admit this; under certain circumstances, I do give up. I give up on big things. Things I love. Things that define me to myself. A few months ago, I gave up on swimming at the YMCA.

Swimming is one of the few cardio-vascular exercises still open to me; as I explained in an earlier entry (That Which Doesn’t Kill You) I have to avoid raising my body temperature. Any time I get too hot, my multiple sclerosis symptoms rear their ugly heads. It gets kind of tricky to keep fit while also keeping cool. Exercise isn’t about keeping cool; exercise is about burning calories. “Feel the burn;” that’s the mantra. Problem is, when I feel the burn, it means I’m about to go down.

I’ve found all sorts of ways to work around this hitch. I can use the weight machines at the gym; I simply lift the lightest increments. I walk over to the water fountain after each machine, and take a drink to avoid overheating.  Then I go on to the next machine; perform my repetitions. Rinse. Repeat. My system works. I do get toned. I don’t get overheated. There is just one flaw. I do get bored.

I am not about getting bored. I am all about joy. Did I say exercise is about burning calories? That’s a boring way to look at it. Exercise, at its best, is about celebrating the body, at its best. Exercise is an act of joy.

For me, the most joyous form of exercise is swimming. My husband calls me a mermaid, because even on those days when I cannot walk, when I cannot put one foot in front of the other, I can still swim. Being in the water levels the playing field. The water exempts me from negotiating my balance. It exempts me from gravity. I know why the dolphin grins.

After all this waxing rhapsodic over swimming, you would think that nothing would stand in the way of me and a swimming pool. Let me introduce you to the women of the YMCA locker room. Gentlemen, avert your eyes.

My first impediment was an aging Southern Belle, who introduced herself by stating, “You’re not from around here, are you.” She asked me for my name, and my birthplace. I told her I was born in the Bronx.

The Southern Belle stiffened. I added, I thought helpfully, “Bronx, New York.”

“Oh, I guess that’s all right.”

A few visits later, The Southern Belle grilled me again about my birthplace. The first time she’d asked, she’d been poolside, looming over me as I backstroked. The second time, I had just stepped out of the shower in the locker room. The Southern Belle apparently felt very comfortable in the locker room. As she was asking me about my birthplace, she was languidly applying her hairdryer to her billowy private parts. Startled, I averted my eyes. I towel dried and dressed as quickly as possible. The hairdryer droned on. I could not help but notice as I passed The Southern Belle on my way out that she was still aiming her hairdryer where the wind should not blow. I checked the clock on the wall. Eleven thirty.

Let me tell you something about the daytime YMCA regulars. They are creatures of habit. I am not, and can never be, a creature of habit. I am not, and can never be, a “regular.” I am a creature with brain shrinkage. I could not be tethered to a schedule, even if I wanted one. When I plan, MS laughs.

This YMCA regular was getting in my way. I figured she couldn’t possibly linger at the YMCA all day. The Southern Belle had to eat. By the looks of her, The Southern Belle had to eat quite a lot. She would likely take a break for lunch. I would no longer go to the Y in the morning. I would go instead at noon.

This plan was brilliant. I encountered The Southern Belle on her way out.  We were both fully dressed. She may not have recognized me; she didn’t ask me where I was born. I changed and showered unmolested by her questions; and arrived at the pool—with all the other lunchtime swimmers.

I waited for a free lane. One swimmer was gracious enough to offer to share his lane. I accepted.

I like to lose myself when I swim; I’m pretty sure I’m not unique in that regard. I knew what he was giving up. I tried my best to be a good neighbor; to keep to one side, to keep a pool length between us. All that neighborliness was exhausting. The man was a shark. He never stopped moving. I often outlast fast swimmers. I figured, if I just held out, I’d eventually have the lane to myself. Then I noticed the waiting swimmers still poolside. Not a chance.

Maybe going to the YMCA at noon was not such a brilliant idea, after all. I remained undeterred.  I could always go in the early afternoons.

Little did I know I would encounter an even more terrifying locker room adversary; an adversary who could get into my head. I feel almost guilty introducing her to you, because she’ll get into your head, too.

But maybe she needs no introduction; chances are, you already know a version of her. Perhaps you are a version of her. She is The Suburban Soccer Mom. All she does is judge. And judge. And judge.

Oh yes, and one other thing; The Suburban Soccer Mom never shuts up.

My first early afternoon swim went…swimmingly. I’d had a lane to myself. I could shut out awareness of all the other swimmers, but better still, I could shut out all my own thoughts. Swimming is my moving meditation. My mantra is simple…I count as I stroke. One. Two. Three. Breathe.

I headed to the locker room showers, dripping and peaceful. And then I heard a strident female voice.

“He’s says the kids should be there to have fun. I’m sorry, but if my daughter were winning a game every once in a while she’d have a lot more fun. Correct me if I’m wrong. Is there something not-fun about winning? Isn’t winning the point? Am I wrong, here? Am I wrong?”

A second, softer voice responded eagerly; a voice so soft I couldn’t hear a pandering word.

I stepped in a shower and turned on the water, hoping to drown The Suburban Soccer Mom out. I tried to regain the calm I’d felt after forty-five minutes of laps, of forming no words in my head besides “one, two, three.” I lingered in the shower a bit longer than usual, giving the Suburban Soccer Mom ample opportunity to exhaust her case against her daughter’s fun-loving/fun-destroying soccer coach.

As it happened, by the time I was done with my shower, The Suburban Soccer Mom was done lambasting her daughter’s soccer coach. She’d moved on to lambasting her father-in-law.

“He expects me to feel sorry for him because he just had back surgery. Why should I? It’s his own damn fault he needed the surgery. He’s too damn fat. His spine couldn’t take it. No surprise there. He should have gone on a diet. He should have gotten off his fat ass and exercised. Instead he runs to a doctor. You want to know the real problem with health care costs in this country? People are too damn lazy. They’re too damn lazy and they’re too damn fat. They overeat, and then they transfer the burden to the rest of us.”

I had to pass The Suburban Soccer Mom on my way to my locker. I didn’t give her glance. I try to avoid looking directly at the other naked women, with the presumption they might extend the same courtesy to me. Even though I didn’t look at The Suburban Soccer Mom directly, there are things I can tell you for certain about her appearance. The Suburban Soccer Mom is blonde and trim, though perhaps no more trim than I am. I can also assure you she must appear perfectly, unassailably normal. She couldn’t possibly tolerate herself otherwise.

I could not help but look directly at The Suburban Soccer Mom soft-voiced companion; she was cowering in front of my locker. The soft-voiced companion was soft-bodied. Her eyes bulged out in terror at the sound of the word, fat.

Once again, I found myself changing into dry clothes as quickly as possible to make a speedy exit from the YMCA locker room. I pitied the The Suburban Soccer Mom for her malady; an unrelenting/unremitting chronic illness that was causing her to assume she is surrounded by inferiors. If only she’d leave off judging everyone, she could be a happier person. If only she was more like…me.

On subsequent visits I heard subsequent rants. When The Suburban Soccer Mom was in a good mood, she’d alternate her judgments of other people’s failings with reports of her own successes; the laps she’d swum, the triathlons she’d won. According to The Suburban Soccer Mom, the world would be a much better place if we would all be more…like her.

And that’s how I ran afoul of The Suburban Soccer Mom. One afternoon she happened to notice that I am not at all like her.

That particular afternoon, I was fighting against fatigue. Fatigue is one of the toughest elements to deal with in MS. It feels like a personal failure. The Suburban Soccer Mom in me told me to drive to the YMCA and do my laps, though The Henry’s Mom in me thought I should save my energy so I’d still have enough vigor to pick my son up from school, to snack with him, to talk with him, to walk the dog with him, and after all that, to make the family dinner. I compromised. I decided to still swim laps, but only for fifteen minutes.

As I stashed my street clothes in the locker room, I heard The Suburban Soccer Mom announcing to the assembled that she and her daughter would be going out for a jog. I happened to return from my fifteen-minute lap swim just as The Suburban Soccer Mom was announcing to those assembled that her daughter had just texted to cancel their jog.  Oh, Sububran Soccer Mom’s daughter, wherever you are, I took the bullet for you that time. Your mother looked up from her cell phone, and found a target in me .

“Well, that was the shortest swim I’ve ever heard of.”

That was it. That’s all The Suburban Soccer Mom said. Yet I didn’t go back to the YMCA for two months. The next time I felt fatigue, I stayed home. And so on, for almost three months.

I shouldn’t bother to spend any more energy dissecting what is wrong with The Suburban Soccer Mom. I ought to figure out what the heck is wrong with me. I gave up something I loved to avoid someone I hated. Maybe I ought to do a little less hating. Maybe the prescription I’ve been writing for The Suburban Soccer Mom is prescription I ought be writing for myself.

I’ll have you know that on Friday I did return to the YMCA. There was a notice posted on the front door, regretfully announcing that though the lifeguard was on duty, the pool heater was broken.

Perfect. I learned a folk saying back in the days when I lived with the good, decent people of Minnesota. The cold keeps the riff-raff out. Sure enough, the pool was empty. I could swim in any lane that I pleased, for as long or as short a time as I pleased. Better yet, the locker room was empty, too.

I’ve got to go. The pool is only open another hour. I’ve got to get in my fifteen minutes of laps.

author’s note: On the drive home from a cold, solitary swim, I heard this thoughtful discussion about judging the judger on NPR. Listen and learn: http://www.npr.org/2011/01/10/132809627/concrete-ways-to-live-a-compassionate-life

For my review of “12 Steps to a Compassionate Life,” the book under discussion on NPR that day, connect to Goodreads http://www.goodreads.com/review/show/144053847

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Fashion Don’t

This morning I made an embarrassing discovery after it was already too late to do a darn thing about it. I was checked in at the Medical Arts Building when I realized what it was about my outfit that felt so funny. I was dressed up in black; black coat, black lace patterned cashmere sweater, black cigarette pants, black fishnet stockings, black heels.

I looked like I was on my way to a funeral. In reality, I was waiting for the results of a biopsy. It was all too transparent that the funeral I was waiting for was my own.

Oops.

The results of the biopsy were negative; the mass they had scraped was benign. Just as I expected. Or so I said.

My wardrobe was singing a different tune.

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