By Caroline Lester
We tend to think of disasters, like 9/11, as fixed in time. But they often ripple through communities.
It sounded like an aluminum bat hitting a streetlight. Like a car crash. My uncle Ron Fletcher, a luthier, got up from a workbench at his home, in Lower Manhattan, and looked south out a window, down Lispenard Street. He saw smoke and called out to his wife, my aunt Marya Columbia, a violinist, who was in bed. It was just before nine on the morning of September 11, 2001. Together, they raced up to the roof. They watched the second plane hit, then the first tower fall. It looked as if the building sank into a pile of smoke, which fell low with it and then rose and spread across the sky. They went downstairs to turn on the T.V. and missed the second collapse. Later that morning, they were evacuated from their apartment, and, after they were allowed back in the evening (only after showing an I.D. that confirmed their address), they went for a walk. They’d seen people trudging past their apartment, covered with a fine, light-gray dust. That same dust coated the street, the ground. Ron remembers lifting up a handful of it and seeing scraps of paper—the size of quarters, burned at the edges—that looked like pieces of insurance policies and financial statements.
Marya, whom everyone calls Muffin (she didn’t know her real name until her first day of school, when a teacher called it out), was forty-five, with high cheekbones and eyes that shifted from green to blue to purple. She played a violin that Ron had found in a flea market, with a bow that he had made. When she was twenty-three, a cellist with the American Philharmonic overheard her practicing in her room through the window and invited her to audition. She landed a seat in the orchestra and played with the group for several years. An article in the Daily News called it “a New York fairy tale come true.” Later, she toured as principle second with the New York City Opera, and accompanied such musicians as Josh Groban and Diana Ross. In the days after 9/11, Marya watched a parade of rescue workers and volunteers pass through her neighborhood on their way to Ground Zero and had an urge to help. “I felt, like, What can I do?” she told me. “All I can do is play.”
Other musicians felt the same. A few days after 9/11, Marya got a call from a violinist named David Gold. He was organizing a string quartet to play in St. Paul’s Chapel, a block away from Ground Zero. The building, which is more than two hundred and fifty years old, is obscured by a half-dozen trees. One of the looming sycamores seems to have saved the chapel on 9/11 by absorbing debris from the towers. (The only damage was to the pipe organ, which inhaled so much dust that it had to be replaced eight years later.) During the months after the disaster, the chapel served as a kind of sanctuary. Firefighters, construction workers, police officers, and others would go there to rest, or for food, or to sleep on cots. Gold asked Marya if she would play for the first responders with him. “She’s got a huge heart—if you ask her to help someone, anyone, she’ll say yes,” he told me. “And, of course, the icing on the cake was that she lived in the neighborhood.” Marya agreed, and, for the next nine months, a large group of volunteers, known as the Music Givers, played three concerts a day at the chapel. (My aunt took the Monday-morning shift.) Mostly they played classical music, though, occasionally, they got requests for Billy Joel or the Irish ballad “Danny Boy.” “You know, we always felt, it’s so insignificant, what we do,” Marya told me. “But then we realized it is significant to these people to have a moment’s rest.”
It took days for the clouds of dust near Ground Zero to begin to clear. Ralph Farris, the volunteer coördinator for musicians performing at the chapel, could feel grit in his teeth on his way in and out. “I remember that really feeling so awful and strange,” he said. “I considered all the things I was ingesting. It was in my mouth. I was breathing it.” Gold told me that he remembers emerging from the subway and the smell hitting him—a mix of chemicals and burning metals that, in the early days, smelled almost sweet. “My reptilian brain was saying, ‘You should not be here at all.’ ” Gold said. “Every instinct in me told me, This is not a safe place to be.” None of the musicians I spoke to wore a mask.
Late last year, at age sixty-two, Marya got a cold that wouldn’t go away. When I called her to talk in February, her voice sounded hoarse. She went to the doctor, who took an X-ray of her lungs, found nothing unusual, and diagnosed her with high blood pressure. In May, she went back to the doctor, who took another blood pressure reading, and, finding it alarmingly high, sent her to the emergency room. A second X-ray revealed a tumor in her lungs. She was admitted to the hospital, where we later learned that the cancer had metastasized to her brain. An ache in her ribs that she thought was caused by a persistent cough was actually the splintering of bone, caused by tumors in her marrow. The cancer may have been related to toxins that she inhaled during her time at Ground Zero. The doctor gave us a timeline: “Anywhere from a few weeks to a few years.” Afterward, my aunt turned to the group of family members standing around her. “Looks like it’s curtains for the old girl,” she said.
We tend to think of disasters—and the impacts on the people involved—as fixed in time. In fact, disasters often ripple through communities, affecting people in surprising ways over decades. The victims of 9/11 have come in three waves. First, there were the immediate deaths and injuries caused by the towers’ collapse. In 2001, Congress created a fund to compensate those victims and their families, which closed in 2003. But, during the next several years, doctors noticed higher diagnosis rates of aerodigestive disorders related to the inhalation of particles released by the blast, including gastroesophageal reflux disorder and chronic rhinosinusitis, among survivors and first responders—the second wave. In 2010, Congress reinstituted the fund, this time with dispensation for volunteers and for New Yorkers who lived, worked, and went to school in Lower Manhattan. The World Trade Center Health Program (W.T.C.H.P.) covered health-care costs for eligible diseases, and the Victim Compensation Fund doled out payments for illness or death. The fund was due to run out in 2020, until activists (including, notably, Jon Stewart) pushed Congress to extend it by seventy years.
The last wave—which doctors believe could be about to swell—is expected to be comprised of people who contracted cancer from their time near Ground Zero. So far, the World Trade Center Health Program has documented an increased incidence of thyroid and prostate cancer among its patients. But lung cancers, which some doctors believe could pose a significant risk to people exposed to the carcinogens in the dust near Ground Zero, have a longer incubation period. Mesothelioma—a cancer caused by the inhalation of asbestos—can take thirty to forty years to manifest. Other lung cancers begin to appear around twenty years after an initial exposure. So far, six hundred and sixty-six patients at the W.T.C.H.P. have been diagnosed with lung cancer. But doctors at the program think that, in the coming decades, they may see an increase. “This is going to get worse,” Michael Crane, a doctor of occupational medicine who directs the W.T.C.H.P., told me recently. “A lot worse.”
It’s impossible to attribute cancer to a single event with certainty: most cancers have long latency periods, and it’s difficult to evaluate the effect of complicating factors like a patient’s environment, genetic background, or behavior. My aunt smoked, and Crane told me that this likely contributed to her diagnosis. It will take years—and much more information than what we have access to now—to parse the effects of the World Trade Center dust on rates of cancer development. Naftali Kaminski, the chief of Pulmonary, Critical Care, and Sleep Medicine at the Yale School of Medicine, cautioned that we don’t yet have the numbers to make firm conclusions. “There’s no real data yet,” he said. In the end, the concern about lung cancers may not manifest in anything at all. But he and others worry that the rate of diagnosis of respiratory diseases among first responders could be a sign of a coming increase in cancers. “It’s now more than fifteen years after 9/11,” Rachel Zeig-Owens, the lead epidemiologist at the Fire Department of the City of New York, said. “This means we’re now in the latency window to start seeing more cancer cases.”
Some of the scientific uncertainty comes from the fact that we still know so little about what happened during the disaster. When the towers collapsed, hundreds of tons of asbestos vaporized into the air. Other debris included ninety-one thousand litres of jet fuel, countless glass windowpanes, pulverized cement, gypsum, calcite, cellulose, hydrochloric acid, lead used on electric cables, polychlorinated biphenyls used in electrical transformers, steel columns that served as load-bearing walls, steel beams, insulation fibres, human hair, fibres from carpets, copper, titanium. Early environmental samples of 9/11 were taken from matter that was gathered in plastic cups from the ground. But without air samples from the first days after the attack, it’s impossible to know exactly what responders and survivors were exposed to. Even more complicated is the possible interaction between toxins. Do, say, fibres somehow interact with chemicals in the air before being inhaled? What happens when dozens of toxins combine? There have been previous instances in which buildings have been destroyed (the Oklahoma City Bombing, for example, or the Sampoong Department Store collapse, in South Korea, in 1995), but, in general, the scales of destruction were smaller, as were the sizes of the population exposed to carcinogens, and there have been few longitudinal studies of the medical effects. Even large incidents, like the Bhopal disaster—a gas leak in India, in 1984, which exposed more than half a million people to methyl isocyanate, and which was followed by multiple studies of those exposed—didn’t produce the complex (and unknown) mix of toxins that the World Trade Center did. “This is pretty unique,” Crane told me. “And therefore unpredictable. And unpredictable in my line of business usually means unhappy.”
Compounding the dust’s effects was that the government seemed to underestimate the harm that it could cause. On September 13, 2001, the Environmental Protection Agency issued a press release, noting, “Monitoring and sampling conducted on Tuesday and Wednesday have been very reassuring about potential exposure of rescue crews and the public to environmental contaminants.” On September 16th, Christine Todd Whitman, then the head of the E.P.A., said that the agency had conducted air-pollution tests that “cause us no concern.” On September 18th, she announced that tests of the air and drinking water near the World Trade Center “indicate that these vital resources are safe.” On September 24th, it rained, and most of what was lingering in the sky or on the ground was likely washed away. But the pile—the mound of rubble left by the towers—kept burning through December, and the debris-removal process continued to disturb settled dust and redistribute it into the air. The result was that people continued working, living, and going to school in the disaster zone, without realizing the danger that they were in and also with little protection from it. Many first responders did not use masks or other respiratory equipment. (In 2016, Whitman publicly apologized for the E.P.A.’s pronouncement of safety. “I’m very sorry that people are sick,” she told the Guardian. “Every time it comes around to the anniversary I cringe.”)
Doctors who treat 9/11 first responders are still diagnosing lung disease, but they’re also beginning to screen for cancer. “You give it another ten years; you’re going to see a big blip,” Raja Flores, the chairman for the Department of Thoracic Surgery at Mount Sinai Hospital, told me. Flores often treats patients affiliated with the W.T.C.H.P., and, by his estimate, operates on one or two victims of dust exposure every month. “Every doctor that deals with this patient population is concerned about it,” he said. (Flores’s father was working as a janitor on Wall Street on September 11th, and Flores now gives his dad yearly CT lung scans to check for tumors.)
On 9/11, Barbara Burnette, a thirty-eight-year-old detective with the N.Y.P.D. Intelligence Division, started her morning at the Brooklyn Army Terminal. When she and her colleagues heard about the towers, they took boats to the piers by the West Side Highway in Manhattan and spent twelve hours evacuating people. Each time her boat docked, she headed into the cloud of dust, searching for survivors. “Everybody was panicking, so you didn’t really want to put your hands on them,” she said. “[We] were trying to guide them.” She spent the next twenty-three days working at Ground Zero.
Soon after, Burnette started experiencing shortness of breath, but she didn’t think much of it until a couple of years later, when she started fainting at work. She was diagnosed with hypersensitivity pneumonitis with fibrosis in 2004 and enrolled in the World Trade Center Health Program. Because of her condition, she received yearly CT scans from the program. Two years ago, a scan revealed a tumor, and she was diagnosed with stage-three lung cancer. She plans to start a second round of chemotherapy in December.
Of the past fifteen years, Marya had health insurance for only one year—in 2014, when individual insurance first became available through the Affordable Care Act. After missing a tax-form deadline, she and Ron dropped it. A few years ago, she injured her knee but refused to go to the doctor. Why pay for health care when she was so close to getting Medicare? “I just have to make it to sixty-five,” she said, hobbling around her house. Last fall, Ron had a health scare, and they decided to enroll again. When she was diagnosed, she had health insurance for the first time in years and was able to get treatment. But the fact that she didn’t have regular screenings may have contributed to her prognosis. One of the things that makes lung cancer so deadly is that it’s often detected too late; by the time symptoms show, the tumors have already metastasized.
The World Trade Center Health Program has a little more than ninety thousand enrollees. (My aunt is near the end of enrolling now.) The vast majority of those are first responders—firemen, policemen, and other city, state, and federal employees. The W.T.C.H.P. estimates that there are more than three hundred thousand additional people who qualify for services: residents of the Lower East Side, kids who went to school in the area, and more informal volunteers. None of the musicians I spoke to had looked into what health coverage they might be eligible to receive. As of now, the program only covers checkups for eligible patients who are already showing signs of preapproved diseases by the C.D.C. (Burnette had a kind of perverse luck: because she already had lung disease, she was being monitored for additional illnesses, which allowed them to catch her lung cancer relatively early.) Some believe that, to prevent more lung cancer cases, screenings should be broadened. Kaminski thinks that all people exposed to W.T.C. dust should be monitored, and high-risk people—those who smoked, or have genetic predispositions to certain diseases—should have access to preventative screenings.
A few weeks ago, Marya was in the hospital with a fever and was slipping into what our family called “episodes,” when she couldn’t stop coughing. A group of doctors and nurses that we learned was called “the rapid response team” would swarm her bed while we watched from the doorway. They stabilized her each time, but, after the last one, in August, the doctor told us that if it happened again, she might not make it through. That night, my aunt turned to me and my sister, and said, “My biggest regret is not seeing my nieces and nephew have a baby or get married.” If she could, I think she would have winked. I asked her if she thought that volunteering with the musicians was worth it, if it might have contributed to her cancer. “You don’t know what causes that shit,” she said. But what if it was the towers, I asked. “I don’t think I could do it differently,” she said. Burnette said the same thing.
The Thursday before Labor Day, Marya decided that she was finished with chemotherapy and radiation. She’s spending her time at home, surrounded by a steady stream of visitors, dictating what we cook. A few weeks ago, she received a check from the Victim Compensation Fund. She told me that she was going to use it to pay off her credit-card debt. After that, she’d like to use some of the money to rent “a house on the shore.” It doesn’t matter where, she said. Just one by the beach, for a week, where everyone could stop by when they could.
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