Verdad Magazine Volume 27
Fall 2019, Volume 27
Fiction by Robert Wexelblatt
Thyssen-Porlock Disease
Patient: van Ruys, Cassandra
Age: 28
Diagnosis: T-P
Notes: Patient was diagnosed during a trip to visit her family in the south of France. She was fortunate to be seen by Dr. Alexandre Sartout, with whom I have exchanged emails on two occasions about my research. When Dr. Sartout determined that his patient would be returning here, he remembered our exchanges and referred her to me.
Patient presents with T-P symptoms including bouts of ataxia, intermittent fevers, some weakness in all four limbs, and repeated lung infections. Her bp is moderately low.
Medical history: normal until age 24. Her mother and grandmother died at 43 and 49, respectively, cause of both deaths recorded as pneumonia but was most likely T-P.
Prognosis: poor.
Proposed treatment: my latest gene-silencing formula.
Additional background and observations: Patient works as an assistant textbook manager in the University’s bookstore. Has considerable resources owing to a generous allowance from her father, a retired maritime insurance executive. Shortly after her mother’s death, her father remarried, has a new family, seldom sees patient. The fortunate visit that led her to Dr. Sartout was their first personal contact in five years. Some of this information was in Sartout’s file. When I asked the patient follow-up questions, she answered willingly and clearly. Patient shows some anxiety, is also articulate, soft-spoken, underweight, intelligent, blonde-haired, blue-eyed with delicate features. Patient is exceptionally beautiful.
At our first appointment, Cassandra reported having just gotten over a month-long bout of bronchitis. When I asked about her general condition, she answered cheerfully.
“I’m feeling well, at least by contrast to how I was feeling two weeks ago.”
The emotional response this answer provoked in me was a surprise. I felt happy but, at the same time, melancholy.
Cassandra was familiar with her disease in so far as a layperson could be, having consulted the usual online sources since returning from France. There was not much I could tell her about Thyssen-Porlock. She knew it was hereditary and her prospects. I explained the new practice of gene-silencing and that this is what I wanted to do for her, that the treatment was experimental, expensive, and might have side-effects I couldn’t predict.
“The money won’t be a problem,” she said dryly, “but I guess neither of us can say whether the side-effects will be,” she added with a little smile.
My chest ached.
As a consequence of losing her mother, Cassandra lost her father as well, though in a different way. My impression was that Mr. van Ruys had substituted money for love or, at the least, attention. Perhaps, as an insurance man, he knew the flaw in that formula, that the price of replacing a ship is not the same as the ship. Yet I’m convinced this is what he did, giving what he had plenty of instead of what he couldn’t readily spare. I didn’t blame him. His daughter had come here to attend the university long before and stayed on. The man had a new life, new wife, new child. His retirement, which she told me coincided with his second marriage, suggested van Ruys had drawn a line firmly dividing the old from the new. Maybe Cassandra saw things this way, too. On the few occasions when she mentioned her father, it was without resentment. I never heard a bad word from her about either him or his new wife. She spoke only of her father’s generosity and her gratitude. My fee was paid promptly and without complaint.
I was not a brilliant medical student. I briefly thought of becoming a surgeon but knew I lacked the talent and also the courage. I recoiled from a dull future as, at best, a mediocre general practitioner. So, I conceived the idea of specializing in some condition so rare that I would be, so to speak, instantly distinguished as an expert owing to the scarcity of competitors. “Specialist,” I figured, is a title with which you can’t go wrong. It has an aura of authority and inspires confidence, even though it has no actual significance.
In the medical library I reviewed hundreds of diseases and syndromes, a demoralizing and unsettling pursuit. Before long, I wondered that anybody is alive at all. I stopped when I happened on Thyssen-Porlock, only recently established as an incurable hereditary disease. I liked the name but also that there was little known of it so that I could quickly learn as much as anybody. It was appealing that I would know more about it than my professors.
At the end of my internship, I married Teresa Vananzi, a newly qualified ICU nurse. We’d stared at each other for a week in the corridors and the cafeteria before I asked her out. Banks are generous with doctors, even newly qualified ones. I borrowed the money for a little house in the suburbs. As a married man with a mortgage I needed a steady income. Laying aside my plan to specialize, I spent three years as an emergency room physician. The work was hard, the hours terrible, the effect demoralizing. That third year, at the hospital’s Christmas party for staff and their families, Teresa was introduced to a heart surgeon. Four months later she left me.
We divorced. The house was sold. There were no children, a minimum of property. Eventually, my mother stopped weeping during our Sunday and Wednesday phone calls, and I was free to take up my original plan.
Specialists in obscure ailments charge colossal fees. The expense gives most patients confidence, especially if they’ve plenty of money. My fee was high too, and yet my income was less than a newly qualified general practitioner’s. Why? First, I had few patients because Thyssen-Porlock is rare and seldom diagnosed. Moreover, the price of the drugs I required was staggering. My fee had to cover that, keep me fed, the old Civic gassed, and keep up the rent and utility bills for the first-floor apartment which served as both home and clinic. The few poor T-P patients who made their way to me I treated on a “sliding scale”—that is, gratis. I saw a few regular patients to eke things out and spent two days a week at a free clinic because I had time on my hands and enjoyed the work. It made me feel useful and I met interesting people. My colleagues assumed that, because I was a specialist, I had to be rich and, as they knew of no one else who treated Thyssen-Porlock, even richer than they were. I was surprised then amused by the unmerited respect this earned me at the few professional gatherings I attended.
My neighborhood was neither the worst nor the best, though nearer the former than the latter. It was working-class with a mixture of young families crowded into duplexes and elderly people, mostly widows not yet pushed into care facilities and who lacked the money or inclination to move south. My next-door neighbors were old Mrs. O’Donnell and older Mrs. Ardekian. They liked to check out my patients. Who came in a big SUV, who on foot? How were they dressed? They approved of the variety of my clientele and were further pleased when they learned about my work at the free clinic. Consequently, I sometimes got casseroles and cookies. In return, I was consulted about coughs, sores, aches. In short, I was accepted and respected. It wasn’t a bad life, though a lonely one.
I had been working at my gene-silencing treatment for four years, with funding from a foundation dedicated to rare diseases. Most of the first year went on research and experimentation, after I secured approval for experimentation with RNAi on human subjects who were otherwise untreatable. For my work, I required DNA, and especially RNA, from T-P sufferers. I obtained samples from two patients I had treated with palliative therapies, the best I could do for them. Both were terribly ill yet neither reproached me. In fact, they were generous, eager to help. At considerable cost, I obtained five more samples from a private laboratory in Denmark. The company had begun then abandoned research on T-P as unlikely to be profitable. My experiments focused on finding out how to turn off the evil messages in the RNA. By then, I thought of my work not just scientifically, with detachment, but also morally, with passion.
I tried different combinations of drugs and one showed real promise in three of the Danish samples. This was the formula I first tried on Cassandra. She had come to me in springtime. I initially scheduled her for four treatments, one a week between April and May.
“I like coming here,” she said at our third session. She was sitting on the examination table, her legs dangling like a child’s. By then, it was all I could do to conceal how much I looked forward to her visits. “You’re a kind man and, of course, you give me hope. I’m grateful to Dr. Sartout for sending me to you.”
Cassandra took a folded tissue from her breast pocket and rubbed her nose. She was getting over a cold. How that cold had terrified me.
I always asked the usual questions but added some less clinical ones each week. Doesn’t love begin with curiosity, the urge to penetrate and know? Isn’t it a kind of tender aggression?
“What was your major?”
“Don’t make fun of me.”
“Why would I do that?”
“People do,” she said a little abashed, lowering her head. “My degree’s in French. Totally impractical.”
“Not if you live in France,” I said.
“Or Belgium.”
I smiled encouragingly.
“Or Québec.”
“Oui, ou Québec. Je me souviens.”
“You speak French?”
“It’s on the license plates.”
“Ha!”
“You have favorite writers?”
She brightened. “Oh, so many! Gide, Camus, Duras, Colette, Baudelaire, Rimbaud, Hugo, Giraudoux, Valéry. Did you know it was by translating Balzac that Dostoyevsky learned to write novels?”
“I’m a humble monolingual physician. It’s news to me, though I’ve read The Idiot. In translation, of course.”
It wasn’t hard to make Casandra smile; nevertheless, I worked at it, given the reward. She was—after all and in effect—an orphan. Like her female forbears, she might be doomed to an early death. And neither of us could forget that.
Cassandra showed no improvement. I tried to think of how to change the medication. I would wake up in the middle of the night, scribble down ideas, crumple them up in the morning.
What else did I do? Most evenings I watched DVDs. My mother had given me a subscription to Netflix as a birthday present. “So your nights will be less lonely,” she said spitefully. In other words, I was pathetic, to be pitied and mortified. The subtext was And where are my grandchildren? But I did watch a lot of movies. That spring I began to work my way through the French New Wave, inspired by Cassandra’s undergraduate major. The films I’d seen a decade before and thought mannered and pretentious now struck me as liberating, full of light and charm. I was taken with their pacing, levity, spontaneity, the absence of anything ponderous, conventional, or formulaic.
It was after watching one of Truffaut’s films that I had the idea popped in my head for a change to Cassandra’s medication, a slight adjustment that, just because of how it had come to me, I thought promising. What is inspiration anyway but finding without looking—or after you’ve given up looking?
On her third visit, Cassandra was accompanied by another young woman, a more robust one. She was supporting Cassandra with an arm around her waist.
“My best friend,” said Cassandra in a weak, winded voice.
“Marina Sokolovsky,” said the other, holding out her hand for me to shake. Her grip was so strong as to seem almost a challenge. She looked me in the face frankly, appraisingly.
I don’t believe it was because Marina rhymes with Karina that she seemed to me so much like the heroine and muse of so many of Jean-Luc Godard’s films. She had the same dark bangs, memorable eyes, soft lips, the same lively and mobility of expression. When, later, I had more opportunity to observe her, I learned that Marina could change from almost schoolgirlish to severe in a moment.
She was obviously anxious about her friend, just like me. While she waited in my living room, I took Cassandra into my office, examined her, then explained what I wanted to do and why.
“It’s experimental,” I cautioned, “but no riskier than what we’ve been doing. It’s all been experimental.”
“Okay, then,” she said bravely in her weakened soprano. “Let’s go on experimenting.”
Mentally crossing my fingers, I administered the new formula.
The following night I got a phone call from Marina Sokolovsky. She asked if it would be possible to see me. I was scheduled to be at the free clinic the next day until four-thirty. I asked if she would like to meet at my house at five.
“I’ll be there.”
She was waiting by the door when I got home, though it was not yet five.
I asked her in and we settled down in the living room. She was edgy, clasping her hands, fiddling with a loose thread on the armrest.
“I asked to see you to talk about Cassie, of course. Confidentially. I’d be grateful if you kept this between us.”
I didn’t reply.
“Look, I understand that you can’t discuss her case with me, at least not the particulars. But I know about Thyssen-Porlock. I’ve read everything I could find, including your article on the danger of lung infections.”
“I can see you’re worried about your friend. I am, too.”
To this Marina made no reply.
“She’s not just a patient to me.”
“Good. I want to know that you’re doing everything you can. Also, I wanted to know if there’s anything I can do.”
“You watch over her?”
She shrugged. “It may not be the ideal way of putting it.” She smiled.
“You know what I’m trying to do?”
She nodded. “Gene-silencing.”
“I have hopes.”
“But she’s not improving and she’s so pale and weak. And she’s losing weight. I’m terrified that she’ll catch something.”
“So am I.”
I had been working flat out at the clinic since ten that morning and I was hungry. Also, if I’m completely honest, I wasn’t ready to part with Marina Sokolovsky.
I checked my watch, “Look,” I said, “I haven’t eaten since breakfast. There’s a decent diner two blocks away. Would you join me for an early dinner?”
Marina didn’t recoil, but she did pull her head back just an inch or two and eyed me with a moue very much like one of Anna Karina’s.
“Why not?”
I could almost hear a pouting Anna saying, “Pourquoi pas?”
It was too early for the diner to be crowded. We took a booth. I ordered meat loaf. Astonishing that I can still remember what Marina had. She ordered a cheese omelet and a salad. “Something light,” she said.
Marina confirmed my guess about Cassandra’s relationship with her father and told me that she didn’t care for her stepmother. She talked about her friend’s grief for her mother and how her illness had stymied her.
“She’s afraid to change anything. I mean, it’s as if she’s paralyzed. That’s why she stays on at the bookstore when she could do so much more. She doesn’t even like it there.”
I asked Marina what she was doing.
“Oh me? I’m a grad student. Cassie and I met at the bookstore.”
“What are you working on? I mean, what’s your field?”
“Computational social science, a new discipline. Fairly new, anyway.”
“It sounds interesting.”
She scoffed. “Interesting’s what people say when they’re not interested. But it interests me.”
“No, I really would like to know. What exactly is computational so. . . social science?” I came within a Freudian hair of saying sociable silence.
“It’s the use of data aggregation to uncover previously undetectable patterns of behavior in large groups. That would be the official definition.”
“Isn’t that sort of data confidential? Private?”
My naiveté made her grin. I thought she was going to say, “So you think there’s such a thing as privacy?” But she didn’t.
“We never identify individuals, of course. Aggregated data without personal identities can, in most instances, be shared legally. Besides, I work for the government. That helps cooperation.”
“That sounds a bit chilling.”
Marina had a contralto laugh, half an octave lower than Cassandra’s soprano.
“I was kidding. Well, not entirely. I’ve got a government grant for my research.”
“From the military? The CIA?”
She laughed again.
“No. Nothing so sinister. The grant’s from the NSF’s Sociology Program. I’m working on patterns of segregation and integration in neighborhoods and schools—also food distribution.”
“So. . . real estate?”
“It’s a bit more complicated.”
“Real estate, red-lining, race and class, then?”
“You like teasing, don’t you?”
“It’s the default position of the excruciatingly shy.”
“You have a sense of humor.”
“At least?”
“Do you tease Cassie?”
I shook my head. It never occurred to me to tease Cassandra. She was a patient; she was ill.
Marina’s intelligence and vitality were as attractive as her looks, and I liked making her laugh. It was a challenge; I could tell that she didn’t do it all that often. Sure enough, the smile suddenly vanished and her expression turned serious, almost menacing.
“Can you cure Cassie or not?”
I was taken aback.
“It’s a simple binary.”
“I don’t know.”
“Have you cured anyone?”
“One patient. I think.”
“You think?”
“Too soon to be sure.”
With one hand she made a fist; with the other she tugged harder at the loose thread on the easy chair.
“Has anybody cured anyone with T-P—for sure?”
“You’ve done your homework, so you know the answer.”
Marina lifted her shoulders and sighed.
“Well, you’re honest.”
“At least?”
“Hmph.”
“I have hopes, Marina. High ones.”
She fixed me with a hard look, narrowed her eyes and pointed a finger.
“You’d better.”
Marina Sokolovsky infiltrated my dreams. She appeared as a prosecutor, a teacher, a nightclub singer. I never dreamed about Cassandra. I resolved to take myself in hand, to be more detached, and to watch fewer films like Two English Girls.
The adjusted medication achieved quick results, astonishing ones. By the fourth week it felt like a breakthrough. I foresaw an article in JAMA or The Lancet. But what was that beside saving the exquisite Cassandra and earning the gratitude of the fascinating Marina?
I decided to add a fifth treatment. Cassandra and Marina both came. The latter was holding a big potted plant with lots of yellowish green leaves. Both were in a jolly mood. Marina actually giggled when she told me they’d gone on a three-mile hike the previous Sunday.
Cassandra grinned. “I could have gone for another two miles.”
Marina pushed the plant into my arms. “A present for you,” she said. Inclining her head toward the living room, she said, “Something living for your living room.”
“It’s a Golden Dieffenbachia,” said Cassandra, just like a child proud of being able to give the name.
She looked radiant. Both did.
I took Cassandra into the office. The first thing I did was weigh her.
“You’ve put on weight. Almost five pounds.”
“I’ve got the appetite of a lumberjack.”
I gave Cassandra a thorough going over before administering the final dose. What I found was exhilarating. Her blood pressure was at the low end of the normal range, and her lungs were perfectly clear.
It was over.
At the door, I said, “You’ll come back in a month and let me check how you’re doing?”
“Of course,” said Cassandra. “A month.”
“I can’t tell you how grateful,” mumbled Marina, as if embarrassed.
They both gave me a peck on the cheek.
That’s when I knew that they loved each other and that neither would ever love me.
BIO: Robert Wexelblatt is a professor of humanities at Boston University’s College of General Studies. He has published five fiction collections; two books of essays; two short novels; a book of poems; stories, essays, and poems in a variety of journals, and a novel awarded the Indie Book Awards first prize for fiction. Two collections, one of Chinese, the other of non-Chinese, stories, are forthcoming.