"Traditionally, the medical community attempted to understand
"I chuckled to myself, thinking that all love affairs seemed cosmic when you were having them."~Shirley MacLaine, Out on a Limb
Andrew made himself very clear: he didn't want to move out. He liked the way things were, he loved me, and he thought I loved him too. "I do love you," I obliged with what I considered a decent amount of sincerity. "Then why?" he asked. I tried to conceal impatience; would have felt sorrier for him if we hadn't already had this conversation about a hundred times. "It's just not working out," I said, wishing he knew I meant, You're a great guy, but you're not who I want to spend the rest of my life with. "I need to be on my own for a while." I'm tired of pretending I'm happy. "It's not you, it's me." It's you. It's all of you.
"Sorry I'm so late, Cassie." Jack appears in the lab at noon looking exhausted. "I had to take Jeremy to the hospital. We were there all night."
"Is he okay?" As soon as the words leave my mouth, I wish I could yank them back. Of course Jeremy isn't okay; he's never been okay, and he never will be. "I mean, why didn't you call me? I would have met you there."
"It was after midnight."
"I'm up late. You should have called." My heart aches at the idea of them sitting in the ER while I was playing spider solitaire. "Is he home now?"
"Yeah." Without even taking off his coat, Jack drops into the chair next to me and blows out a sigh. "The doctors don't know what to do for him."
"He keeps pulling through. He has a strong will to live. That's got to count for something."
"Yeah, but what kind of life is this? He was screaming from the pain."
I sigh too, feeling helpless. Voight's Disease is so rare that almost nothing is known about it. It wasn't even diagnosed until the mid-70s when Dr. Emil Voight of South Africa treated a mother and her newborn son who were both suffering from a host of the worst symptoms imaginable: vomiting, high fever, bloody, pus-filled skin ruptures, and in the mother, temporary blindness, ferocious headaches, and muscle weakness to the point of collapse. While his patients became more and more debilitated, Dr. Voight, fearing that the sudden onset indicated a deadly bacterial agent which could lead to an outbreak, frantically searched his medical books for clues. He found no matches, and no other patients presented with the symptoms, including the woman's husband. She died five days later, and under "Cause of death" Dr. Voight wrote, "Unknown." The baby's symptoms abated but didn't disappear. Then, in 1977, the woman's sister gave birth to a son, fell ill, and within a week was also dead, leaving a very sick baby in the care of her perfectly healthy husband who, it turned out, was the brother of her sister's husband. Recognizing the obvious genetic component, Dr. Voight contacted hospitals and clinics all over the world in search of other cases, eventually establishing the International Coalition for Unidentified Diseases (ICUD) in 1985. He spent the next 20 years studying blood samples and family histories of some 90 cases, but succumbed to cancer in 2005 before isolating the gene that housed the deadly mutation. One of the doctors at his clinic took up the project, but focused his efforts on refining a chemical protocol that alleviated the pain and nausea and prevented the open sores from getting infected. Even still, mortality rate is 100 percent, with mothers living an average of just four days after diagnosis. The afflicted children, always boys, usually survive into their early teens, but are at the time of death blind, paralyzed, and in constant pain. When Jack's wife Sophie died of Voight's ten years ago, he'd already made a name for himself as the youngest member of the team who isolated a gene associated with heart disease, and was the logical candidate for a modest endowment to do research, which he supplements with an annual government grant and donations from a fund Sophie's parents set up.
"Why don't you go home," I suggest gently. "Just for a few hours, be with him."
He stands, slips off his coat. "The best way to help Jeremy is to find the gene mutation."
"Okay." Even though I am never anything but positive and hopeful, my stomach clenches up every time he speaks as if his son can be saved. Most people don't understand what goes into "finding a cure"—they assume it's just a matter of trying different combinations of chemicals to combat a disease, then joining forces with a drug company to produce medicines which are tested in clinical trials and eventually approved by the FDA. But determining what, exactly, has gone wrong on a molecular level is incredibly complicated, and after ten years Jack's search is equivalent to looking for a thumb tack on Mt. Everest.
Jack's sister Margaret calls at 2:00 to say that Jeremy's fever is gone, and he's having soup. An engineer with a Masters degree from MIT, she moved in with Jack and Jeremy after she got laid off, and is now part of the growing population of professionals unable to find employment since the economy tanked. And the way things are going here in the lab makes me wonder if being jobless will be my fate too. Government funding has been cut to the bone, and money is being wrestled out of the grip of every hard-working person I know and tucked into corporate bank accounts overseas. Living with Andrew, a sensibly-employed accountant, had cushioned me during the recession, especially after Jack cut my hours to thirty a week, but my single paycheck isn't enough to cover expenses, and I know that soon I'll have to get a second job, a roommate, or move to a cheaper place.
Jack hangs up with Margaret and writes chicken soup, half glass of milk in a notebook. For two years we've been logging what Jeremy eats, how many hours he sleeps, his moods, if he naps, if he gets extra exercise or watches too much television. "I wish we could figure out what triggers the flareups," Jack says, "but they seem so random. If they happened after predictable intervals, it could indicate a build up or a breaking down of some enzyme or protein. Even knowing that would help."
I can't even imagine the pressure he's under. Usually when your child is sick you can get on line and find advice from the experts. But Jack is the expert. And unless we find a cure, his child will die.
When Jeremy sees me in the doorway, he gets out of bed and wraps his arms around me and sighs, a thin-chested sound. "Auntie Cassandra, didja bring ice cream?"
"Chocolate chip cookie dough."
"My favorite!" he says, as if I don't know. He's small for his age, and fragile, but his crystal blue eyes and blond hair make it easy to forget he won't grow up and break the hearts of a dozen girls. "Dad says I can have whatever I want for supper. Guess what I told him?"
His mouth drops open, a child's surprise. "How'd you know?"
"Because that's what I would want too."
"Not exactly a well-balanced meal," Margaret observes, knuckles on hips.
"Just this one time," I say.
"More like every time you come over."
"Lighten up, Margaret." Jack reaches for Jeremy and lifts him high. "Tonight is a fun night!"
"Every night with Auntie Cassandra is fun!" shouts Jeremy, and even though he doesn't mean anything against Margaret, he might just as well have stabbed her in the heart. To her falls the role of caretaker, handling the dreary tasks of getting him up and washed and dressed, administering his medication, often forcing him to eat when he doesn't want to, and then tutoring him. "Chocolate chip cookie dough!" I hear him tell his dad as they head into the kitchen.
Feeling guilty, I say to Margaret, "You must need a break. Why don't you let me have him for an overnight?"
"I've told you—you're not trained to take care of him."
"But neither were you, in the beginning! Come on, Margaret. I've spent so much time with him. I've been with him during flareups, I've seen him throw up from pain. I know what medications he takes, and why and when. And he's old enough now to tell me what he needs."
"It's too risky."
"I think I should ask Jack."
"Don't you dare, he's got too much on his mind already! You'll just be adding pressure."
"He'll feel like he has to say yes to you, and then all he'll do is worry."
"That's not true! Jack trusts me with Jeremy."
"Auntie Cassaaaaaandra!" we hear Jeremy call.
"Be right there!" I call back. Margaret and I cease fire without declaring a victor, the way we always do when we have this conversation.
Since Andrew moved out, the place is nice and quiet, no television blaring: Patriots, Red Sox, Celtics, Bruins... there was never a break in the action. But many nights it's too quiet, and lately I've been leaving the television on when I go out, so there's noise when I come home. I always touted myself as a woman who didn't mind being alone, but I guess I do. For most of my life I've been tethered to one boyfriend or another, and while they were all decent relationships, they lacked that magical whatever... that spark... that sense of true belonging that other couples seem to achieve without effort. For me, men have always been like purchases I could take home, try out, and then bring back to the store when I found a defect. Was seeking perfection a good thing or a bad thing? I no longer knew. I haven't had a girlfriend to bounce ideas off since all mine got married and ditched me twenty years ago.
It's after 9:00, so I mute the TV, flip open my cell, and call my sister Ellen in Seattle. Half an hour passes while I listen to stories about her son who has made dean's list for the third semester in a row at George Washington University, and her daughter who is on the honor roll. The household is in an uproar, she adds, as they prepare for their trip to Hawaii during winter break. She's a decent sister, but has a mean streak and inevitably says things like, You don't have kids, so you don't know, but.. or Sometimes I envy you, not having to deal with a husband! Feeling gloomy, I hang up, then call my brother Alex in Nashua. Another success story, he's opening up his fifth internet cafe.
As a dirt poor, part-time lab technician, I often think of myself as the mutated gene in the family. Not that gene mutations are always bad. A gene mutation is what decreased mandible size in primitive hominid species, compromising jaw strength and necessitating a new technique to cut through animal hide, which led to tool making, which is associated with a larger brain. I alternately love and am terrified by how random Nature is: Try this... okay, try that... is it better or worse? A crap shoot.
In fact, it was my interest in genetics, sparked during college but dormant for two decades, that prompted me to answer the ad for a lab technician-no experience necessary! I was an expert at writing resumes (restless and easily bored, I rarely stayed at a job more than a year or two,) and a few strategic credential enhancements scored me an interview.
My heart flipped over the moment I saw him—shaggy blond hair, beard, mustache, glasses, hazel eyes. Average height, stocky build, nice teeth, warm smile as he held out his hand and introduced himself. However, at the time I was living with Andrew, and technically not supposed to fall in love with another man.
As Jack showed me around the small lab, he talked about Sophie and Jeremy and the challenge of getting grants for such a rare disease. When the brief tour ended he said, "I have to be honest. It'll be long hours, lots of weekends, and not much pay."
"I don't mind," I said. And that's how I got the job.
I started work the next day, and listened with interest as he described how he acquired the specific candidate genes to sequence, starting from DNA samples from 25 Voight's families: "I sent the DNA to a company that does a genome-wide screen. They used gene chips to look at a million different genome variants in the samples, some of which were the rare kind that are inherited from both parents. Obviously, the variants that showed statistically-significant association with the disease indicated which genes might carry the mutation. At the end of that process, I prioritized the potential genes suggested by the genome screen, and now we need to sequence those genes by using a polymerase chain reaction (PCR). Does that make sense?"
No. I nodded.
"Good. So we select a DNA sample, and, using a thermal cycler, heat it up so that the strands of the double helix unzip. Once they're separated, the thermal cycler lowers the temperature, and a polymerase is introduced. The polymerase uses each strand as a template to reproduce. By repeating the process for each gene with different chemicals, you can compare the sequences of A, T, G, and C, and hope to find a variation within each candidate gene. In addition, you can also grow as much DNA as you need, and it can be stored in the freezer for years."
"How do you know which part of the DNA to copy and analyze?"
"You don't. That's the problem." He went over to his desk, with a key unlocked the top drawer, and took out a notebook. "Any lab that receives federal funding is required to keep a log of everything they do." He handed it to me. "That's really important."
Flipping through it, I was intimidated by the pages and pages of numbers and symbols. It didn't seem possible that I would ever understand it! But before long I was conversing with ease about chromosomal translocations, interstitial deletions, Mendelian inheritance, and transposable elements; a secret language forestalling questions about what I did for a living. Most of the time my family just asks, How is Jeremy? and lately, Jack is single, isn't he?
"Is it me, or are all the days starting to feel the same?" He sounds weary, so weary.
"All the same." We're in the middle of one of the coldest winters on record, with snowfall in Boston already several feet above average. Jack's in an extra down mood today because last night we were supposed to go to his house to celebrate his birthday with Margaret's curried chicken on rice. However, late in the afternoon we thought we'd stumbled upon an anomaly in a sequence Jack has been investigating, suspecting there might be a connection between the decline of movement associated with ALS, whose victims carry a gene mutation there, and Voight's, especially since ALS favors a male host, particularly in those stricken at a younger age, and Voight's has never manifested symptoms in female infants. So, growing more and more excited, we stayed until almost 9:00 analyzing DNA culled from tissue samples I'd grown earlier in the week. However, the lod score was negligible-you like to see it clock in at about 3 and we were below 0.5. Then Jack had to go home and endure Margaret's wrath: Jeremy is heartbroken! A flat out lie, because Jack had called at 6:00 and spoken to him, and he was fine, especially after Jack gave him the green light to skip the chicken and just have birthday cake. Have a piece for me, Buddy, I heard him say. Margaret's help, a double-edged sword.
"Sophie's mom called this morning," he says.
I sigh. She's an extremely nice woman, but as founder and hard-working director of the National Voight's Disease Association which raises about $20,000 a year for Jack's lab, her calls depress him because there's so little progress to report. Periodic updates are sent out to all our donors, but they're dense and scientific, and, I suspect, go largely unread. Mrs. Johnson likes to call and ask flat out when a cure will be found. Jack sugarcoats the truth as much as he can, but still has to admit that he's no closer now than he was ten years ago, and she always cries.
"Maybe we're looking in the wrong place," he says, rubbing his eyes. "It's such a long shot, Cassie. How the hell are we going to find this in time?"
"We will." An unspoken rule has been in effect since I started working here: he is allowed to voice his fears but I am not. "It's just a matter of time."
"You really think so?"
"Of course!" Such a lie. Jack is the one who believes in God, he's the one who should be saying We're going to beat this thing! Our tiny, sparsely-equipped lab is about the only one on the planet that has even heard of Voight's—the scramble to isolate the molecular perpetrator of Alzheimer's Disease involved thousands and thousands of geneticists working round the clock, and still took twenty-something years. If God exists, why can't He take pity on our valiant efforts and reward us with that lucky break? One lucky break, that's all we need. It would cost God nothing.
Every two or three weeks an old PhD pal of Jack's blows into town, Dr. Renee Temple. Tall, stick-figure thin and yet at the same time suspiciously bountifully chested, she flies from Chicago to Boston, rents a snazzy coupe, and arrives at the lab looking like she's just stepped off a fashion magazine cover. "Ja-ack!" she coos, arms around his neck, tidy kiss on the lips. Then, polite but distinctly disinterested, "Hi, Cassie, how've you been." The scene never varies: without hearing my response ("Fine, Renee, how are you?") she links her arm through his and says, "Hungry?" He says, "Starved!" and to me tosses a scrap, "Don't work too late!" I always wish I had some notice and could for once be wearing something besides jeans and a sweatshirt, but realistically, what difference would it make? I could never compete with her. After they leave, I'm worthless for the rest of the afternoon, slouched forlornly at my desk, wondering if I could have done that, gotten a Ph.D in biochemistry, bought expensive clothes, been thin, gotten breast implants, written articles that appeared in Nature, the most prestigious science publication in the world. "She's here to accept the Gale Lynn Award," Jack told me last month; "I went to the ceremony. Everyone who is anyone was there!"
I don't know if they're sleeping together. He never comes in late the next day, never seems flustered, sexed up, or distracted. His demeanor toward me is always warm, friendly, inquisitive about what went on in the lab after he left. I would love to know what the deal is, but he and I haven't crossed over into that kind of relationship. I don't ask him about her, and he doesn't ask me about Andrew. In fact, I haven't even told him that Andrew moved out.
"I have to get going," Jack says with a glance at his watch. "Jeremy's appointment is at 4:00."
"Will you call and let me know how it goes?"
He stuffs paperwork into his briefcase and with a final smile, leaves. I review some data, run a few genetic comparisons. My dream is that one night I'll be here alone and I'll find it. I'll call Jack and say I think I've got something here... he'll tear back to the lab, and with disbelief in his eyes, check and recheck, then say, Cassie! Oh my God, Cassie!
But this night is not that night, and I sit in the growing darkness indulging in an anxiety attack. Most mornings I awake with a knot of dread in my stomach, which I make worse by obsessing about the physiological damage stress does to the body, not the least of which is cosmetic: wrinkles and gray hair. I wonder if I'll be able to get a new boyfriend, or if I'm done. Such a petty thing to think about, when all around people are dying of cancer or losing loved ones in the war. Guilt swamps me, then shame. And yet, the idea of living alone for the rest of my life is just too horrible to bear. Last night my sister complained that her husband never writes anything down and forgets when they have plans for the weekend, and all I could think was how much I would love to switch places with her.
My cell phone rings. Seeing Jack's name on the caller ID, I flip it open. "Hey, how's Jeremy?"
"He's great! Where are you? Still at work?"
"Yeah, finishing up a few things."
"Going to be there a while? Jeremy wants to stop by with pizza."
"I'd love that," I say, suddenly absurdly happy, like a wife and mother. "I'll wait for you."
"Is it good?" I ask Jeremy, reaching over with my napkin to wipe a strand of mozzarella cheese from his chin.
"The best pizza ever!" he shouts, because he's not allowed to shout at home—Margaret is prone to noise-induced migraines. "Mushrooms rule!"
"There are over 14,000 species," Jack says, watching him with rare, relaxed pleasure. "Most are basidiomycetes." To me he says, "A few years ago they tested the effect of the psilocybe mushroom versus Ritalin. As if there was any doubt which would be better!"
"Are these that silly sibee kind?" Jeremy wants to know.
"No, these are button mushrooms. They're an excellent source of potassium."
"What's potassium for?"
"It's a mineral you need to keep your heart and kidneys healthy. If you don't have enough in your diet, you can get hypokalemia."
Jeremy, chewing, has lost interest. Meanwhile, I know what Jack is thinking: Might there be a correlation between potassium level and Voight's? That's the way his mind has to work, he has to constantly be open to untested ideas, every second of every day. I know that tonight after Jeremy has gone to bed, Jack will get on line and start googling. I probably will too.
When the pizza is gone, Jack sets Jeremy up at a microscope so he can look at fruit flies, then discreetly maneuvers me out of earshot.
"I know you've been working a ton of extra hours, and I really appreciate it," he says. "I wish I could pay you."
"Next week I'm going to write up some proposals for more funding. Maybe give you a raise."
"Well..." he demurs; unlike most men, hates to ask. I did all the work on the Wikipedia article about Voight's Disease last year, and he still raves about it. "You're so good at making our accomplishments sound bigger than they are."
"I'm glad to do it."
"Cassie, you're the best. I don't know what I'd do without you." He puts his hand on my arm and I try to ignore the annoying tingle I feel whenever he touches me. "Don't work tonight. Go home and relax."
"Okay." I nod, don't tell him that I'd much rather be here, it's too pathetic; better he should think I have a boyfriend waiting for me at home who wants to hear all about my day and doesn't shush me when I talk during a game.