Category Archives: History

Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

Finally…FDA Approves Zinbryta

IMG_4206I just read that the experimental drug I’ve been taking for ten years has finally been approved by the FDA and will be available as Zinbryta. This must mean Ms. Lab Rat is officially retired. After many years of commuting to the National Institutes of Health (NIH) to take the only drug that’s stopped the progress of my multiple sclerosis (MS), I am now going to have to buy the drug like everybody else.

You know what? I’m thrilled. I’ve hated having to hear heartbreaking story after heartbreaking story of yet another person getting an MS diagnosis, getting an ineffectual, often expensive treatment, getting worse. They look at me, and I appear fine. I’m not, but I’m also not getting worse. My medication has worked. But for these past ten years, so many others with this disease have had no chance of seeing if this medication would work for them. My dear friend Debra died way too young still waiting for this day. As you can imagine, I’ve been on the phone a lot this afternoon, updating every person who has asked me about Zinbryta. This blog post is for those of you whose numbers aren’t in my contact list.

Until I let the world know the risk I took with this drug was worth it, I won’t feel that my tenure as a Lab Rat is well and truly over. But I guess an era has come to an end.

No more free flights to Washington DC for free MRI’s. No more free top level medical care. No more cognitive tests. (Hooray!) No more free monthly blood tests to check my liver function. (My liver is just fine, thank you.) No more nights on-site at the swank Safra Lodge. No more free stays at Bethesda Court Hotel. No more side trips to the awesome DC museums and zoo. No more viewings of indie films at Bethesda Row Cinema. No more delicious dinners at Bethesda’s many fine restaurants.

Do you get the idea that being in a clinical trial at the NIH has been a pretty sweet deal? It has been for me. But what I’ll miss the most will be the people: the brilliant doctors, nurses, and interns of the NIH. Why, even the taxi drivers usually had pretty fascinating back-stories to share, if given half a chance.

The one thing I regret about my participation in the trial is that I waited until the end to reach out to other guests at the NIH; like the older lady I met in the shuttle van who’d lost both breasts and lymph nodes to ineffectual and painful cancer treatments. The cancer had spread and spread for years until she was accepted for an NIH trial (“I couldn’t believe it, at my age.”) Now her NIH doctor extracts some of her immune cells, expands the cell population in the lab, and treats the cancer with it. Her cancer? Gone. The side effects? None. She’s one happy lady. The NIH complex is full of motivated people pursuing second chances, and I wish I hadn’t been too timid and/or respectful of their privacy to chat with them. (If anyone reading this is an NIH lab rat, consider this your invitation to introduce yourself.)

I’d meant for this blog post to be about Zinbryta, but I guess it’s just a big thank you note to the NIH.

Zinbryta has been safe and effective for me for years now, and I’m terribly eager to let people know that there is one more—I think far better—alternative out there to try. But if Zinbryta doesn’t work for you, do not despair. There are plenty of other MS drugs in the research pipeline. Maybe one day you’ll wind up as a Lab Rat, too. Clinical trials are not all MRI’s and blood work. They are also an investment for the future of others coping with disease. Who knows…maybe one of us will one day be a Lab Rat for the drug that winds up becoming the cure. I won’t stop hoping.

 

A Valentine’s Day Meditation On My Ex-Medications

I have three exes. Three medications I allowed to enter my body because I believed they would stand up for me against my nemesis, multiple sclerosis (MS).

One of my exes hurt me. One of them stood me up—and then ran into trouble with the law. One of them was nice, but ineffectual. None of them was tough enough to defeat multiple sclerosis.

I hooked up with Avonex in ’96. Let’s say that Avonex was like that kid who impresses all the grownups with his good looks and good manners, then insults them all behind their backs.

Avonex was my first. He caused me nothing but pain.

The day I started Avonex, my breasts were rock hard, and weeping. I made a sacrifice for Avonex; I weaned my sixth month old son.

The needle was long, the procedure confusing. After the injection, I ached all over for days.

Did it get any easier?

I never did get used to the needle, or the muscle aches, or the joint aches, or the flu-like symptoms. Only my boobs bounced back.

My doctor encouraged me to give it more time. Avonex and I only lasted nine months. Not my fault. I injected faithfully. Avonex didn’t hold up his end of the bargain. I had another MS attack. After all my patience, through all my pain, Avonex had done nothing to fend off the multiple sclerosis. As soon as I got back from the hospital stay, I called it quits with Avonex. I was tired of being his pin-cushion. Cutting my ties with Avonex meant cutting off the entire Interferon family. I wouldn’t give his cousin, Betaseron, so much as a glance.

Was it a clean break? No. Avonex was clingy. It took months—no—years, before I stopped feeling lingering joint pain from you-know-who. Since then, I’ve met one girl who claimed Avonex was treating her right. I wish her good luck. Avonex just wasn’t my type.

After Avonex, I went on a series of blind dates down in New Haven in a clinical trial for rock star Tysabri. I wasn’t allowed to know if I was with the real Tysabri, or his placebo twin brother. As the lack-luster months went by, I began to suspect I wasn’t involved with the rock star I was hearing so many great things about. I sure wasn’t dancing until three in the morning, or resuming my tight rope routine. I did my due diligence, and kept making trips to New Haven for the sake of science until the study was up.

Once the Tysabri trial was over, I went for wholesome boy-next-door Copaxone. Which was better than nothing. Or so I was told. Copaxone required a shot every day, which was quite a commitment. The needle was small. The side effects were…non-existent. Copaxone wasn’t going to hurt me. But did it help me? I couldn’t tell.

I believed in Copaxone. I had hope for our future. I shot up faithfully, day after day after day. I felt sorry for other girls, stuck with fickle meds that gave them nothing but side effects. Over the years, maybe I got too complacent. Maybe I ignored a couple of symptoms I shouldn’t have, like my fingertips going all numb and tingly.

When I relapsed on Copaxone, I did not even know it. I was shocked to learn my brain had developed a black hole. Copaxone let me down gently, which made the betrayal all the more insidious. I had no choice but to call it quits.

After I dumped boy-next-door Copaxone, I wanted to go for Tysabri. The real one. The rock star. After all those precious months I’d invested with the placebo twin in the Tysabri trial, I felt I deserved the real thing.

Tysabri and I did finally hook up. It was a one-time deal. The very next day, the Feds found out about Tysabri patients who died in the trials, and the parent company yanked Tysabri off the market. Maybe I was actually lucky to have been matched with that boring old placebo.

Tysabri and me were not meant to be.

Looking back, I wonder if I got benefit from any of my exes. I relapsed on all of them. They were all expensive, with price tags of over $1,000/month. Did any of those fancy boys slow down the progress of the multiple sclerosis even a little bit? I’ll never know. Perhaps all I got out of those medications was a sense of hope. Even a false hope can get a girl out of bed in the morning. That’s all very nice, but a false hope can also keep a girl from looking for The One.

I think I have finally found The One in 2006, then going by the name of Zenapax. When Zenapax started getting studied at the  NIH (National Institutes of Health) in Baltimore, he changed his name to DAC-HYP. Now DAC and I have a long distance thing going. We meet once a month in Baltimore. DAC has succeeded in keeping the multiple sclerosis at bay. The worst I’ve ever suffered from DAC is an occasional rash. That’s not too high a price to pay.

If I have learned anything from my exes, it is to keep my eyes open. I would dump any treatment in a heartbeat, even dear DAC, if I could one day hook up with that elusive cure.

p.s. from 2016: Even after the NIH study of DAC HYP ended, DAC and I are still going strong. My visits to the NIH have continued, though on an every six-month basis. DAC treats me right. But hopefully, we will soon not be so exclusive. If the FDA approves this medication, DAC will be seeing many, many other people, under the name Zinbryta.

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.

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.

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.