The Family Gene

by Joselin Linder

  I don’t suppose they swelled for no reason. It probably happened during a long walk or hike, which, for a mostly sedentary girl like me, weren’t a common occurrence. One afternoon I had parked on one side of the Golden Gate Bridge and walked across it. I was alone, unemployed, and miserably entangled in an unfulfilling relationship. Amy, my best friend, who was still living in Prague, mentioned on the phone one day that when she pictured me in San Francisco, she always saw me walking across the Golden Gate Bridge. So one day I went. At one end of the inevitable two-way walk, I was so unimpressed, it was as if I suddenly understood the impulse people seemed to have to jump from this bridge. The pretty view aside, it was freezing and the car fumes mingled with the sour bay air. I hated the idea of having to recross to get back to my car, but didn’t have a choice. My throbbing feet didn’t either. Later that night, after I had collected the stoner from work, eaten someplace with a bar, and driven home, I peeled off my shoes, socks, and pants to see a visible “pouf” between calf and foot.

  I moved my feet up the wall and watched a movie. The next day the swelling was gone. But over the ensuing weeks, it continued to make the occasional random appearance, changing in size from day to day, ankle to ankle.

  At this point, I had seven years, three cities, several countries, and two oceans between my father’s death and my current life. I knew that I had the gene that killed my dad. I knew that when the time came to have children, which was not going to be while I was dating the stoner, I should call Dr. Kricket. There was some talk that Dr. Kricket and others at her lab were working on solving this very problem. How, I wasn’t sure. I knew that they would have to locate and map the gene, but all of that still seemed so abstract. I simply had the instruction “When I want to have a baby, call the Seidmans,” which I stored in the back of my head along with “Smell milk before drinking” and “If bleeding, call 911.”

  A future marred by some vague, unknown genetic anomaly was tough for me to imagine in my mid-twenties. I continued to simply live my life, not really especially interested in the potential impact sharing this gene with my father would one day have on my life, but growing increasingly aware of the psychological wounds left by his protracted death.

  When I think about my San Francisco years now, they are rife with long, lonely drives on California highways. I was twenty-five years old. Then I was twenty-six. I didn’t have many friends except for the stoner, who only laughed at my jokes after I explained them. I hated him. I hated me. I was twenty-seven, then suddenly twenty-eight. I decided to visit a therapist, because that’s what I’d been taught to do when the road ahead was foggy like a San Francisco afternoon. I had read in a magazine that you should shop deliberately for a therapist, meeting with many before deciding on one. It only made sense.

  I met with a woman who reminded me of a newscaster with a perfect helmet of blond hair. She bobbed her head while I spoke. I gave her the abbreviated version of the shittiest things that had ever happened to me. When I was finished, her head had stopped bobbing and her mouth was agape. She suggested I start coming three times a week and go on a cocktail of medications. Preferring a traditional cocktail, like a whiskey sour, I tried out another person I found in the phone book, this one named Rebecca. She was six foot four and had an Adam’s apple peeking out over her string of pearls. She was animated and seemed genuinely interested in what I had to say. I liked her. But as soon as I wrapped up my tale of woe, she looked at me with something almost gleeful in her eyes and exclaimed, “It sounds like you really have it all together!”

  “Well, I wouldn’t say all together,” I cautioned.

  “No, look at you. You’ve had such a time of it, and here you are, doing so well!”

  “Well, I wouldn’t say so well.”

  “Oh, sweetie, trust me; you really really have it together,” Rebecca insisted.

  But even I knew I really, really didn’t have it together. I had a drinking problem. I had a stoner. I had no direction. I had a kitchen that smelled like cigarettes and three weeks’ worth of dirty dishes. But maybe compared to some of Rebecca’s other clients—hell, maybe even compared to Rebecca—I was doing really, really well.

  Believing there had to be a middle ground between the lady who wanted to narcotize me and the lady who wanted me to become a mentor, I decided to keep on shopping. I listed all the shittiest things that had happened to me, one after the other:

  Ages 18–22: Father (slowly, horrifically) dies.

  Age 22: Learn I have a genetic condition that may or may not slowly cut short my life.

  Age 22: Fall in love with a heroin-addicted poet.

  Age 23: Move to Prague to get away from heroin-addicted poet boyfriend.

  Age 24: Ex-boyfriend commits suicide two ways (in order to be sure).

  Age 24: Move back to America.

  Age 25: Move to San Francisco.

  Ages 25–28: Fall into an uncomfortable codependency with a stoner.

  Ages 25–28: No friends.

  Ages 26–28: No job.

  Age 28: Starting to get worried about the swelling in my ankles.

  Age 28: Having trouble with transitions.

  Having trouble with transitions.

  The last one was the real reason I had sought out a therapist. As if the other items on my list weren’t bad enough, I was having trouble with transitions. I couldn’t go to bed at night. The clock would tick later and later. I didn’t want to transition from awake to asleep. It felt too hard. But eventually, at some point, sometimes the next day, sometimes at four a.m., sometimes at five p.m., I would go to sleep. And then I wouldn’t wake up. I didn’t want to. It wasn’t about feeling tired. I mean, I could wake up. I just didn’t feel like it. So I’d go back to sleep, waking up briefly only to decide it was easier to roll over again. Eventually, probably because I needed a cigarette, I’d finally get out of bed. But other than maintaining that tired cycle of addiction, nothing motivated me. I was caught in whatever state I was in. If I was eating, it was really hard to stop. If I wasn’t eating, it was really hard to start. If I was sitting, why stand? If I was standing, why sit? Playing or not playing computer solitaire. Drinking or not drinking whatever alcoholic beverage was closest. I closed bars because I couldn’t leave. I became practically agoraphobic because I couldn’t go out. I couldn’t get a job because I didn’t have a job.

  And then there was this epiphany: I didn’t have any wishes anymore.

  Like everyone, I had always loved to talk about what I would wish if I ever found a genie or a leprechaun or a magic wand. After wishing for a hundred or a million wishes, I’d rattle off my list to a parent, my sister, a dog, whoever would listen, and it was never a bad list either: amazing chocolate; friendly mythological friends; a scratch-n-sniff sticker that was also fuzzy and glittery; a neon-pink Forenza sweater from the Limited, circa 1985; a date followed by a long happy marriage to Ethan Hawke as the kid in The Explorers, Ethan Hawke as the guy in Dead Poets Society, or Ethan Hawke as Troy from Reality Bites (decade-dependent); one of those huge blue bows Mary Ingalls pulled off on Little House; an endless Little House marathon; the lipstick color Samantha Mathis wears in Pump Up the Volume; “Careless Whisper” by Wham! to come on just as I have gotten up the nerve to ask Jeff Heiny at Jill Barnett’s bat mitzvah to dance with me; and well, I could always wish for world peace, riches for the poor, wisdom, health, and a long and happy life.

  But as I was about to start therapy, I realized I had no wishes at all. There had been something about the catastrophic loss of my father, followed by Jeromy’s suicide, not to mention my own uncertain future, that had just depleted the world of edges and color. I was fine, always. Neither sad nor happy. Just fine. With a low-grade boredom ever present like a tan cardboard ribbon through the flavorless marble cake of my existence.

  “Death and taxes . . .” I used to shake my head and lament like a seventy-five-year-old vacuum-cleaner salesman. “That’s all there is.” Why make a bed you’re only going to mess up later? Why bo
ther to live if at some point you die?

  The boredom that engulfed me during those years was suffocating. It felt like a warm wet blanket covering your nose on a humid day. It smelled like the velvet ropes in line at the bank when you are four years old and standing there with your mother. It looked beige. My boredom overwhelmed me. When I considered getting a job, contemplated going to a party or a movie, traveling to someplace exotic, or even getting the most amazing sticker ever designed including a glittery scratch-n-sniff flower, it all just sounded . . . meh.

  When I finally found the right therapist, she offered up an observation that I took to heart: boredom, she believed, was a form of anger. It was anger on hold. Anger on autopilot. According to my chosen and carefully shopped-for therapist, tall with a perfectly bouncy head of dark brown hair and dressed in comfortable casual wear, boredom and anger went together like peas and carrots, she said. I thought that sounded absolutely right.

  Nineteen

  With my mental health under the care of professionals, I agreed to a trip to visit Dr. Kricket. More specifically, Dr. Kricket had responded to an e-mail I had offhandedly written to her one day, asking her if I should be worried about my ankles. She came back with an offer of a free plane ticket to Boston. She would incorporate the visit into her study and could use grant money to bring me in. Of course, I was lethargic, which made the idea of travel challenging. But not going to Boston seemed as whatever as going to Boston. So, free-ticketed, I opted to go.

  I hadn’t been to the lab in five years, since just after my father died and my sister and I had gone with our grandmother after my faux-college-graduation ceremony. I had never actually visited the Seidman lab. I had always gone to an echo lab at Brigham and Women’s Hospital, just off the Green Line, near the art museum.

  Barbara, the wonderful strawberry-blond nurse, scooped me up in the hospital lobby and hugged me warmly. She delivered me to a room where I dressed myself in a gown and then had an ultrasound. Faranak, the same echo tech who’d conducted this very procedure on me three times now, carried on the friendly chatter. Once again, she had slipped me into the day’s crowded schedule as a favor to the lab, but more likely as a favor to Barbara or Dr. Kricket, both of whom doted on her affectionately before and after the test. “Faranak’s our girl,” Barbara said, not for the first time, giving her a warm squeeze. “We love her!”

  “Me too,” I agreed. It was true. I loved them all. They oozed kindness and it wasn’t the fake kind I had grown used to in my life in San Francisco, where intimacy came strangled in hard liquor.

  After the test, I waited for Dr. Kricket to make her way in and give me an update. This time, when she walked in the room, she wasn’t alone. A pretty white-coated doctor who looked about my age accompanied her.

  As the lead singer in a short-lived college band that played in public only six times, I was once greeted by a fan with a hollow moony glaze across her face. It felt a little crazy, to be honest, being stared at like a celebrity. Having more often been the fan in similar situations—as the girl who really does get a little choked up when she runs into local newscasters—I totally understood the sentiment.

  I mention this because the first and only time I ever met Meredith Moore in person, this is exactly what it felt like. When Meredith, a tall, dirty blonde with dusty freckles and glasses, approached me in the examination room, she was breathless and giggly; at one point it seemed almost like she wanted to touch my hair. Frankly, I wouldn’t have been surprised if she’d asked for an autograph.

  Truth be told, there was something just a little bit glassy about everyone’s eyes that day. But Meredith Moore had it bad. It was like she knew me. She held my gaze and laughed a little too appreciatively before I finished my sentences.

  There was a simple explanation for all of this. She actually did know me—in some ways better than my mother, or even better than I knew me. She knew my genes and she knew them intimately. Meredith was the postdoc fellow who had been studying my family’s genes, and she had been doing so for more than a year. She had been the reader of my DNA, human RNA. She had been reading my genes to see how I’d been made. Now here I was, the living embodiment of that recipe book she had been staring at under a microscope.

  Seeing me, even in my full-scale late-twenties depression, was a very real moment for her after all those months of study. What was more, she had news for me. It was big news. In fact, I should have been fangirling all over her. Meredith had had a breakthrough. She was about to tell me all about it—one of fourteen people in the history of the world who could truly appreciate this breakthrough.

  And even in the haze of my depression, I understood the significance of it: Meredith Moore had mapped our gene.

  * * *

  Meredith Moore came to work at the Seidman lab for her postdoc in 2001, in an apprenticeship of sorts. After she left that job five years and one mapped gene later, she ran her own genetics lab for three years. Today she is a full-time research administrator and manager of the animal welfare program at the University of Texas. She has a cat she inherited from an old friend who passed away, and she recently gave birth to her first child.

  Meredith and I are the same age. Something about this felt immediately important to me. How did the lives of two such different twenty-nine-year-old women intersect in that small research lab in 2004: one who’d just finished searching for a therapist, the other who’d just finished searching for a family gene?

  Meredith grew up in Pennsylvania, studious and self-admittedly borderline OCD. After high school, she got enough scholarship money to have her pick of out-of-state schools. She chose the University of Delaware, which had the chemical engineering program she liked best.

  The first half of her freshman year constituted about as rebellious a phase in her life as she would ever have. Between parties and socializing, her GPA started to fall. To keep her scholarships, Meredith had to eke out 60/1000ths of a point on her GPA on her last report card of the year. Her mother celebrated her daughter’s accomplishment with a cake that read simply 60/1000ths.

  In college, Meredith’s drive to save the world led her to major in chemical engineering. She soon realized that the kind of organization and planning skills required to do research appealed to her OCD side. She became a protégée of a professor who was studying the function of mitochondria in a cardiac cell. Though she had always thought she would prefer to work on problems she could see with her own eyes—like a beating heart—she found herself spending a lot of time looking through a microscope. Much to her surprise, she found she liked working with the DNA in a heart cell. Looking under a microscope, she was amazed to find that the cardiac cell kept beating outside of the body. But what hooked Meredith, totally blew her mind, was that it wasn’t just the cardiac cells that kept beating . . . individual parts of the cell—like the mitochondria— also beat.

  Still, Meredith wanted to make sure she was helping actual people. Prompted by her mentor, she shared her research with the Seidman lab and was immediately hired. From day one, her job was to create a version of something called a “DNA microarray.” A microarray is basically a spot of DNA attached to a solid surface, typically a glass slide, that can be analyzed by a computer. Back in the early aughts, scientists still had to slog through the tedious process of actually sticking DNA sequences onto slides before they could get around to studying them. Meredith arrived at the Seidman lab and was tasked with figuring out the best way to attach DNA to glass. (I, on the other hand, was at this time somewhere in California listening to Euro rock on repeat and wishing for a new season of Sex and the City to come out on DVD.)

  But changes in genetic medicine were already coming about quickly, and around Meredith’s one-year mark with the Seidmans in 2003, companies had started manufacturing microarrays that labs could buy. In other words, you tell them what DNA sequence you want, and like a version of Blockbuster for science geeks, that sequence will simply show up in the mail. No muss, no fuss, and way less expensive than paying a
whole year’s salary to a postdoc fellow playing hit or miss with slides.

  So, Meredith told me, “That’s when Dr. Kricket said, ‘I have this other project . . .’”

  It was us. We were her other project.

  Little did we know, once Meredith was on our case, everything would change. She applied her outstanding attention to detail and endless gumption to dig up files for Patient A, my great-grandmother Mae; Patient B, my great-uncle Nathan; Patient C, my father Billy; Patient D, my great-aunt Norma; and Patient E, my uncle Norman. She similarly labeled the other nine of us who were still living and relatively healthy and gathered our medical records. Meredith compiled photographs of us and constructed an intimate genetic story of a family. She even found a photo of Mae’s mother, Ester, with the telltale swollen ankles. Eventually, Meredith began to feel close to us, especially to my cousin Phyllis, who lived in a suburb of Boston and came in to meet with her on a fairly regular basis.

  Our case motivated Meredith. We needed help and she wanted to give it to us. Science was still a long way from “curing” genetic diseases, but we lacked nearly every answer. Although much had been learned since my father’s death, very little of it was practical information.

  Up until 2003, treatments for genetic diseases were still largely superficial. While no genetic diseases could be cured outright, some could be held at bay with medication. In rare instances, treatments could trick the body into something resembling a cure. But in order to even begin to look into those possibilities, we had to better understand the mechanism that was causing our illness. We knew a thousand things that weren’t causing it. We had no idea what was. The first step toward getting answers was finding the gene causing the problems. Meredith made mapping our gene her top priority. Her drive to connect to patients, to actually feel like she was helping people, was finally being nourished. And my family would reap the remarkable benefits.