I left the agent’s office that day, and remained, for the next ten years, without health insurance. We also, as a family, made plans to change doctors.
* * *
Although Jeromy and I had broken up, we maintained a tenuous relationship mostly through letters in which we’d discuss Russian literature and “real problems” like Siberian prisons and Napoleon.
Mostly he helped me flesh out plans to move to Europe with Amy. We’d decided to move to Spain after she completed her five-year acting program. I worked all spring and summer, cashed in my bat mitzvah bonds, and, with our pooled money, bought us two one-way tickets to Barcelona. I signed us up for a monthlong class to learn how to teach English that also promised to help us find jobs upon completion.
I don’t believe I would have done something so out of character as move to Europe were it not for Jeromy. Our relationship status was vague, but the ocean and the hundreds of miles between us were concrete. He seemed impressed that I made the move. He’d often said he would like to spend time in Paris like Hemingway, Henry Miller, and Ray Bradbury. Europe appealed to Jeromy on a literary level, if not a literal one. But I was the one actually going there.
I have to admit I was relieved he never asked to join me. Life with Amy shone in stark contrast to life with Jeromy. While he was always deliberate and somber, Amy was spontaneous and funny. Together, we were confident and brave. Everything was surmountable with Amy along.
* * *
When Barcelona didn’t work out and we couldn’t find work, we took a train to Prague on an offhand suggestion from a friend who’d once had a Eurail pass. We didn’t care that we didn’t know anything about Prague, or anything about Europe, for that matter. When our train stopped at a station on the route to our destination, we got off. We eyed the large gold letters on the wall: münchen. I called ahead to our contacts in Prague to let them know when we’d be arriving.
“Um, we’re in München,” I said, landing hard on the word “munch.” “Our train arrives at eight . . .”
Our train to Prague wasn’t departing for another four hours, so we set off to eat dinner in this strange, new, but exciting town. Over pizza and beer, our waiter inquired politely, “So, what do you girls think of Munich?”
In unison, with the eager sincerity of a couple of five-year-olds, we replied, “Oh, we’ve never been.”
It took us another hour before we figured out that we were in Munich, and that “München” was Munich in German—and not the present participle of an English word that means “to eat.”
When we disembarked in Prague on November 3, 1998, in three-degree Fahrenheit weather, the coldest November on record (with, incidentally, the clothes we had packed for a move to a Mediterranean country), we put on every piece of clothing in our suitcases to avoid hypothermia. We were young. We were alive. We were in a country with socialized medicine. What could go wrong?
* * *
By 2000, Amy and I were living and traveling together: to Italy, France, Poland, Hungary, Ireland, Scotland, and England. As my second Prague spring rolled around, I was working as a producer for an English-language theater company and an editor at an English-language press. I rarely spoke to my family. I didn’t yet have a cell phone, and with the time difference, it was often easier to leave each other messages.
After spending a weekend at a work retreat, I came home to find several messages from my mother. I picked up the phone and nonchalantly dialed the international number, listening to the now-familiar trill of the long-distance ring. When my mom answered, she asked to speak to Amy. It was an unusual request, but I don’t remember reacting to it. I handed over the phone and began scrambling some eggs for dinner. When Amy hung up, I turned to look at her. Her face was gray.
“Someone’s dead,” I said quickly.
She nodded.
“It’s Jeromy,” I added.
She nodded again.
I looked back at my eggs, which had morphed into a strange yellow substance floating in a pan—for what purpose? I left them and went into my bedroom. Some amount of time later, Amy came in.
How did he die? I probably asked. Did he . . .
She didn’t have to tell me any of it. Jeromy and I had spoken intermittently, and seen each other once when I had come home for a visit. On June 10, 2000, the twenty-nine-year-old poet checked himself into the Holiday Inn on High Street, east of Broad, in Columbus. He had a rope and enough heroin to kill himself. He used the clothing rod in the closet to tie his noose, then he shot up.
Jeromy did it two ways, to make sure.
I fell apart.
When my father died, I was falling in love. There was absolutely no room for the agony of death. With Jeromy’s suicide, my sadness doubled down. Where life had been a rich adventure, it suddenly clouded thickly over and boxed me in.
Fifteen
I spent another few weeks in Prague trying to stay afloat, and then decided to move back to the States. My friend Jason wanted to start a fashion business with some money he had inherited after his mother’s death. He asked me to move to San Francisco and work with him. Having absolutely no idea what else to do, I agreed to go.
Jason and I drove cross-country from Columbus. We took the southern route in the hope of avoiding any bad January weather. We drove down through Memphis and Nashville. We laughed at the faux Americana of the town of Texarkana on the Texas-Arkansas border. As we drove across Texas one morning, the sky was heavy with low winter clouds. They descended over the road in front of us until we were encased in fog. We drove on that empty stretch of highway, no more than ten feet of visibility in any direction. When we came out of the fog into an expanse of blue velvet sky, the red sand around us glittered in the sun. I looked in the rearview mirror and saw the wall of thick cloud behind me. It rose up as high as I could see, like the world was starkly divided in two.
* * *
The phone call came in to the house phone of my San Francisco apartment about a week before my cousin Danny’s wedding. When I answered, it was my aunt Kathy, Danny’s mother, my father’s little sister.
“Norman’s sick,” she told me in a serious but hurried voice.
Norman, her other brother. My uncle.
“What?” I stuttered.
“Look,” she continued, barreling through the bad news as quickly as she could, “he’s going to look like Billy. That’s what Ellen says.” My aunt Ellen, Norman’s wife.
“But Uncle Norman doesn’t have it,” I reasoned. “He doesn’t have the murmur!”
“I’m just telling you what I know. They want us all to be prepared for what he’s going to look like at the wedding.”
Aunt Kathy’s son, Danny, and his fiancée were getting married in June in Phoenix in an outdoor wedding. I had teased them that it was like planning an outdoor wedding in Minnesota in February. I had bought a new dress.
At the time when I received the call, Norman had already been sick for a year and hadn’t told any of us. Only his wife and kids knew. He explained that it was because he simply hadn’t been able to bring himself to tell his parents.
When my uncle arrived, surrounded by his family, he was gaunt and had my dad’s illness’s signature belly.
* * *
It all came out during a camping trip Norman took with his wife, his son Jeffrey, and his son’s girlfriend’s family at Lake San Antonio in central California. Norman had already started retaining lymphatic fluid in his abdomen, just like his older brother.
Norman wasn’t prepared to get sick, even if he should have been. For one thing, he didn’t think he’d have to prepare. He was supposed to be free of the gene that caused this very problem. After my dad died, Dr. Kricket sent him to a cardiologist at the University of Southern California for testing. They hadn’t heard the telltale murmur that indicated the gene. So why would Norman think that the small bit of distension in his gut—if it was even visible—was anything more than a little weight gain, or just some bloating due to gas? And the little cough he h
ad picked up? Well, he’d gotten an inhaler to help with that, even if it hadn’t helped. In 2000, four years after Billy’s death, Norman had gone on vacation with family friends who had pointed out that his legs were swollen. That hadn’t convinced him either.
As Norman dove off a boat on that beautiful sunny day, he did not expect the shock of the cool of the water to suddenly restrict his airways. He did not think that when he landed, the fluid inside him would weigh him down. He certainly didn’t anticipate that the fluid in his belly would restrict his diaphragm, the pressure of the water forcing it upward. The panic that ensued when he found he was unable to pull in a full breath likely exacerbated the pleural effusions—the fluid in his lungs sufferers of this illness all came to know so well—launching him into a full-blown panic attack.
Ellen and Jeffrey watched from on board the boat, calling out, “Are you okay, Norm?” “Dad, are you okay?”
Jeff’s girlfriend’s father dove in and guided Norman back up the ladder. Norman pulled away as he sat gulping for air, asking for a second to catch his breath. “Leave me alone!” he gasped. The group of near strangers stood around awkwardly in that small space, watching as Norman’s breath eked its way back into his lungs.
Within a few minutes, he was okay, and the outing resumed. My uncle didn’t get back into the water that day. Within a few weeks, Jeffrey and his girlfriend broke up—the product of graduation and being in your early twenties—and Norman let his son know the truth about the genetic lottery, which, like his brother, he had lost.
* * *
My aunt and uncle’s marriage always seemed like a very romantic love story. From my perspective, my parents worked well together, but something about Aunt Ellen and Uncle Norman’s relationship was different. They cared deeply for one another, but did not care as much about extending their compassion to others, or at least to Norman’s family. That reverence for one another often left the rest of us distinctly on the outside. They loved their four children, but even my cousins (or perhaps especially my cousins) seemed a part of the everyone-else-ness of the world at large. This was most apparent in the way they teased us, never each other. It mostly looked and often felt like they told jokes to amuse each other at our expense.
To be fair, my observations were limited to family events. The few times I saw them away from our extended family, they were decidedly mellower. For example, in my twenties, when I stopped by their home for an unannounced overnight with a friend, I was surprised by their warmth and hospitality. Before we arrived, I warned my friend, “They are kind of mean, but they’re really funny.” Of course, they immediately invited us to join them for dinner. As we drove away the following morning my friend countered, “I have no idea why you think they’re mean . . .”
If Uncle Norman was the funniest person in my family, Aunt Ellen was definitely the second funniest. The rest of us mostly appreciated their humor. Other times, for example when their sharp observations jabbed at our flaws and shortcomings, it was harder to appreciate. Ellen in particular used humor to deflect any real intimacy with our family. We, Billy’s branch, were a family of the eagerly earnest, and were therefore easy game for Ellen’s disdain. When her teasing was gentle, it was a pleasure. As it devolved into ridicule, however, you could only hope her focus had shifted to your sister, mother, or a cousin. She was like the family mean girl, so you pretty much always wanted her to like you.
My uncle was the classic middle child, full of resentment toward his family. Their sibling competitiveness was so fraught that when my father and I were putting together a family video for my grandparents’ fiftieth anniversary party, we had to count out the pictures one by one—Billy’s family, Norman’s family, Kathy’s family—so that no one of the three children was disproportionately represented. I was assured that Norman would notice.
My aunt Kathy has pointed out that Norman’s resentment toward his parents and siblings was a constant in the family dynamic. My grandfather took a promotion across the country when his children were teenagers. While Billy had graduated with the same group of kids in the same small New England town, my uncle was forced to transfer to an L.A. high school for his sophomore year. Then, when another job opportunity opened up for my grandfather, Norman was forced to transfer to yet another school, this one in Phoenix, for his senior year. His sister, Kathy, endured the moves as well, but each time the shake-up for her was less extreme, since each move coincided with beginning junior high and then high school. My uncle never fully forgave his parents for those moves.
My father and Aunt Kathy had always been much closer with each other than they were with my uncle. During family games, Kathy, the youngest of the three children, was paired with Billy, the oldest, while Norman, the middle child, was always paired with a parent. That dynamic, and the jealousy and heated competition it gave rise to, carried over into adulthood: Kathy and Billy vs. Norman.
When Uncle Norman studied at the University of Arizona, he took a different direction from my dad, who had graduated premed with a chemistry degree. Norman, charming and funny, studied and then pursued a career in marketing. Two years after graduation, he was back living with his parents in Phoenix and trying to get a handle on his life. Both my dad and Aunt Kathy had met partners and married them. My dad had moved with my mom to Iowa to begin medical school. Aunt Kathy and her husband, a Vietnam vet and soon-to-be career army man, were preparing for a move to a base in Germany. Norman’s life was the least settled, and his father judged him for it harshly. Sharing a home continued to corrode their already fragile relationship.
My uncle decided to take a trip to Tucson to visit old friends back at his alma mater. While he was there, they asked him if he wanted to meet a nice Jewish girl. Uncle Norman was game. That night he met Ellen. Six weeks later, they were engaged.
As Norman began to succeed in life, moving to California, working in sales and being promoted, first at one large aerospace company then another, there was always the sense that Billy and Kathy were somehow doing better. To their father, Kathy would always be the baby girl. My dad and his father spoke almost daily. My grandfather served as my dad’s most trusted adviser and advocate.
My aunt and uncle decided to adopt when Ellen was told that she would require surgery to unblock her fallopian tubes if she ever hoped to carry children. She underwent the surgery, but soon after adopted Marcus. A year later, she gave birth to Aaron; two years later, she gave birth to Jeffrey. They knew they wanted a girl. They discussed going through in vitro fertilization and electing for a female, a very new technique in the mid-1980s, but then a different door opened when they learned about a two-year-old named Tiffany who had been given up for adoption. They called her Rachel, and with her, their family was complete.
In Uncle Norman’s endless competition with my father, not having the faulty gene had been the one major way in which he had finally won. Now he didn’t even have that.
* * *
For five years, my uncle believed he didn’t have a murmur, so he didn’t have the gene. His doctors at the University of Southern California had cleared him when he went in for a test with explicit instructions from Dr. Kricket. After he got sick, a ripple spread outward through the family. Without the murmur as the telltale sign of the disease, how could all the people who thought they were safe from this illness be sure that they were? All along, whether or not she had bad news for you, Dr. Kricket had offered a kind of security. She was a prophet with a very positive attitude.
“Yes,” she’d say, “you have the gene, but you’ll never get it like your father.”
Or: “Yes,” she’d admit, “you have the gene, but we will have answers by the time the next generation gets sick!”
Fortunately or unfortunately, the confusion was short-lived. Soon after Norman’s diagnosis, Dr. Kricket asked my uncle to have his heart rechecked for a murmur, and this time it was clear that he had one. The USC team had simply missed it because it was so subtle. The dark upside to all of this was that my aunt and uncle
had not spent five years waiting for Uncle Norman to start dying.
There was another upside too. When it came to his lifelong sibling rivalry, my uncle still had an edge—he just didn’t know it yet. His victory wasn’t going to come from not having the gene . . . it was going to come from not passing on the gene.
* * *
Although mapping a specific gene in the early days of the new millennium involved time-consuming and prohibitively expensive techniques, Dr. Kricket had made it a priority. She and her team had a theory based on the family members who had presented with a heart murmur, the anomaly they were continuing to use as a presumptive genetic marker. They believed our problem gene looked like it might be on one very specific chromosome: the X.
All humans have forty-six chromosomes. Each of those chromosomes contains, on average, twenty thousand to twenty-five thousand genes, therefore narrowing things down to one chromosome would be significant in helping to pinpoint which of those twenty-plus-thousand genes contained the variant that was causing my family members to die. When people and their reproductive partners pass the forty-six chromosomes of human DNA to their children, each partner contributes half. For every chromosome, each of us passes one chromosome out of the two possible chromosomes we inherited from our mothers and fathers. One of the chromosome pairs, among many other things, codes for gender. The chromosome passed by the father dictates the sex of the offspring. Every person in the world usually has two chromosomes that suggest whether they are physically female or male. Women have two X chromosomes, and men have one X chromosome and one Y chromosome.
Women, because they have two X chromosomes (one from each parent), will absolutely pass any child an X chromosome. Men, however, will pass on either a Y or an X. If a man passes on an X, he gets a baby that is coded for female. If he passes on a Y, he gets a baby who is coded for male. There are always exceptions—given how amazing and complex our genes are—but speaking generally, this is the process.
The Family Gene Page 10