The Atlanta Journal-Constitution
SEPT. 11, 2001 20 YEARS LATER
Police, firefighters, construction workers and others who worked amid the ruins of the World Trade Center following 9/11 later paid a price for their heroics.
More than a decade after the twin towers fell, Ron Kirchner began forgetting things. Buckling his belt. Closing his car door. Once, while visiting a preschool class on the 13th anniversary of 9/11, he even neglected to wear his customary necktie and New York City Fire Department hat. “He was in a panic,” says his wife, Dawn. “He used to like to bring the kids something, like coloring books. And he couldn’t find anything.”
A SLOW DECLINE
This was unlike Ron, who had always been devoted and dutiful. He frequently wrote Dawn love notes, hiding them around their house. He made time after work to play with his two children, Luke and Ava. He mopped the floors before going to bed, whistling while he pushed the handle. “He did it joyfully,” Dawn says. “Ronnie was a giver.” Ron brought the same enthusiasm to his job as a firefighter in Queens, where he obsessively cleaned his truck, stayed up all night waiting for calls, and — according to unit lore — once smashed an Xbox with an ax because he thought that some of his younger colleagues were spending too much time playing video games. “Dad thought they should be reading up on fire stuff, training and procedures,” Luke says with a laugh.
Ron was one of the tens of thousands of police, firefighters, construction workers and others who worked amid the ruins of the World Trade Center in Lower Manhattan following 9/11. Like many of those responders, he later paid a price. Diagnosed with asthma and a lung disease, both linked to Ground Zero exposure, Ron retired on disability in 2009 and moved to Arizona.
At first, life in the desert was good. Ron landed a comfortable job working private security for a wealthy client. He and Dawn visited the Grand Canyon. They saw the red rocks of Sedona. Ron would wheeze while hiking, and sometimes at night, but a nebulizer made his breathing less strained.
By 2014, however, Ron’s troubles with thinking and memory were becoming unmanageable. Back in New York, he had deftly maneuvered a fire engine along the city’s crowded streets; now, he struggled to parallel park the family’s SUV inside two spaces. He would put toothpaste on his toothbrush and not know what to do with it. He was let go from his security job — in part, Dawn says, because he struggled to use a smartphone.
One day in early 2015, Dawn received a call from her husband’s naturopathic doctor, who had given Ron the Montreal Cognitive Assessment, a brief test that screens patients for cognitive disorders. Ron had scored poorly, unable to draw a simple clock face with the correct time. Dawn took him to a neurologist, who diagnosed him with dementia. Ron was 51. The neurologist, Dawn says, told her that a magnetic resonance imaging scan of his brain was comparable to that of an 85-year-old.
Today, Ron suffers from seizures. He can no longer speak coherently, cut his own food or bathe himself. He requires around-the-clock care and supervision from his wife and children, lest he wander into the streets around his family’s home in Oceanside, N.Y., where they moved in 2017. “He doesn’t really know who I am,” Dawn says, “or who he is, or what his favorite thing in the world — the fire department — is.” She doesn’t think Ron knew he was being photographed for this article, and believes it would have been impossible to explain it to him. But Dawn feels it’s important to share his story as a way of helping others — and that her husband, if he could still understand, would feel the same.
Ron’s condition is almost unheard of for a 59-year-old man, and it points to an emerging medical mystery: Twenty years after 9/11, Ground Zero first responders are suffering from abnormally high rates of cognitive impairment, with some individuals in their 50s experiencing deficiencies that typically manifest when people are in their 70s — if at all.
“That is the most extraordinary thing with these cognitive issues, and what blows me away,” says Benjamin Luft, director of Stony Brook University’s World Trade Center Health and Wellness Program, which cares for and studies responders. “You don’t expect this to occur in your 50s, because it doesn’t occur. And a lot of these people are in their early 50s.” Although most cases are not as severe as Ron’s, the number of responders showing memory loss and other signs of impairment has been rising over time. Scientists and doctors are now asking: Is 9/11 to blame?
RACING INTO DANGER
On the night of the attacks, Ron Kirchner arrived in Lower Manhattan with a group of firefighters. Bewildered by the sheer scale of the devastation, they froze — until someone in the group spoke up. What are we waiting for? Let’s go. “From that point on,” Luke Kirchner says, “they were working like crazy.”
When the planes hit the towers, it triggered an almost inconceivable catastrophe. Collapsing buildings pulverized hundreds of thousands of tons of cement, steel, glass and other materials, along with thousands of computers, miles of electrical cables, and hundreds of thousands of gallons of heating and transformer fluids. The destruction created a blizzard of pinkish-gray dust that seemed to coat everything; beneath the piles of rubble, jet fuel ignited fires that burned and smoked across a 16-acre area until Dec. 19.
Seven days after the attacks, Environmental Protection Agency administrator Christine Todd Whitman reassured the public that the air around Ground Zero was safe to breathe. It was not. (In 2016, Whitman apologized for her remarks.) The dust contained glass fibers and other particles small enough to lodge deep in the lungs, as well as many substances and chemicals that are known toxins — including asbestos lead, and polychlorinated biphenyls (PCBS), a category of odorless compounds whose manufacture in the United States was banned in the late 1970s after they were linked to cancer.
Over the following weeks and months, many responders developed what doctors later dubbed “World Trade Center cough,” a syndrome that often includes shortness of breath, nasal congestion and acid reflux. Some suffered from nightmares and anxiety attacks. For some, the problems were temporary. But for others, they persisted — or got worse. In the years since the attacks, a wide range of chronic health conditions linked to 9/11 have emerged: asthma and sinusitis, sleep apnea and depression, post-traumatic stress disorder (PTSD) and a laundry list of cancers.
Luft, the director of Stony Brook’s WTC Health and Wellness Program, is a renowned infectious-disease specialist who developed some of the first treatments for Lyme disease and Aids-related infections. On 9/11, he spent the day preparing the Department of Medicine at Stony Brook University Hospital for an expected influx of wounded people. No one arrived. Survivors were too scarce. Days later, he visited Ground Zero; upon returning to his office on Long Island, he began establishing a clinic to care for responders.
His efforts and others like it have evolved into the World Trade Center Health Program, which is administered
by the National Institute for Occupational Safety and Health and provides medical monitoring and treatment to more than 100,000 responders and survivors through a nationwide provider network and at seven clinical centers in New York and New Jersey. Enrollment in the program has increased over time, and doctors continue to see new and unusual ailments.
In 2018, for example, researchers found that firefighters who worked at Ground Zero are at elevated risk of developing a rare variant of a blood cancer precursor disease that was also more common among Vietnam War veterans exposed to the toxic herbicide Agent Orange. “The asthma that [9/11 responders] have is not typical asthma,” Luft says. “The sinusitis is not typical sinusitis. The GERD [gastroesophageal reflux disease] is not typical GERD, where you just take a Tums” to treat it.
Luft still remembers the smell at Ground Zero — and an unsettling realization that the fallout would be ongoing. “What I knew right away was that this was something that had not been seen before,” he says. “There have been other mass disasters, like Fukushima and Chernobyl. But this was a unique combination of prolonged and complex physical and psychological exposures. So it would be totally unpredictable as to what the [long-term health] problems would be.”
‘IT WAS STAGGERING’
In 2014, Sean Clouston began to see a disturbing trend. An epidemiologist and professor of public health at Stony Brook University, he had suggested giving the Montreal Cognitive Assessment to some of the nearly 8,000 responders, mostly living on Long Island, who were being followed by Luft’s clinical center. On 9/11, many had been in their late 30s. “They were now in their 50s, so I thought we should get a baseline to see where they were and help us follow up later,” Clouston says. “We didn’t anticipate that many of them would have problems.”
But they did. Of the 818 responders Clouston and his colleagues first tested, 104 had scores indicative of cognitive impairment, a condition that can range from mild to severe and that occurs when people have trouble remembering, learning new things, concentrating or making decisions that affect their everyday lives. Ten others scored low enough to have possible dementia. Clouston was stunned. As a group, the responders were relatively young. Many had to pass mentally demanding tests to become police officers and firefighters in the first place. They were some of the last individuals you would expect to be impaired, let alone at roughly three times the rate of people in their 70s. “We should have seen — maybe — one person” with dementia, he says. “And we had way too many people showing impairment. It looked like what I’m used to seeing when we study 75-year-olds. It was staggering.”
Since then, other studies from Stony Brook researchers have found that within a group of 1,800 responders who were initially cognitively healthy, 14% developed impairment over a 2½-year period, and that responders with PTSD and impaired cognition have both blood and brain protein abnormalities similar to those seen in patients with Alzheimer’s and related diseases. “We are slowly getting pieces of the puzzle,” says Stephanie Santiago-michels, a research coordinator for Stony Brook’s WTC Health and Wellness Program. “We know that their brains are changing.”
The evidence that 9/11 was responsible may not be definitive, but it is difficult to ignore. The air at Ground Zero contained chemicals and microscopic particles that are toxic to brain cells and have been linked to higher risk of Alzheimer’s and other dementias. Clouston’s group has found elevated levels of a protein linked to neuroinflammation in the brains of responders, with higher amounts corresponding with having spent more time on the pile.
“Pollutants aren’t good for your brain in animal studies,” says Stony Brook research professor Erica Diminich. “If you put a rat in a little chamber and blow a bunch of fumes and exhaust into it over a period of weeks, it’s not looking too good for the rat. So it’s not a stretch to say that [Ground Zero air] could have some detrimental long-term effects on responders.”
And the explanation may not only be physical. When Clouston was a child, he was careful not to wake his grandfather, a World War II veteran, from naps. “If you surprised him, he would hit you, because he thought you were a German” soldier, Clouston says. “My grandfather had PTSD to the last day of his life.” Many responders have PTSD, in which people suffer from a variety of physical and emotional disorders — including flashbacks and difficulty sleeping — after experiencing dangerous or terrifying events. Among the responders Clouston has studied, PTSD correlates with lower scores on cognitive tests.
In their published studies, Clouston and his colleagues are careful to use the term “mild cognitive impairment” instead of “dementia.” So much remains unknown, Clouston says, and “we don’t want to scare anyone.” But recently, he says, other scientists looking at the same data have started to give unexpected feedback. “They say our language is too soft,” Clouston says.
THE WORK NEVER STOPS
Dawn Kirchner, 57, sits in her dining room, trying to explain life with Ron. Lacking the right words, she pulls up her sweater sleeves. She is not physically imposing: At 5 feet tall and 95 pounds, she’s a foot shorter and 120 pounds lighter than her husband. Her biceps, however, are well developed. “I never had these before,” she says.
Some mornings, Ron will nap. Some mornings, he won’t. Nothing is predictable, and everything is fraught. Ron swallows his toothpaste. He struggles to step into the shower. He resists when Dawn tries to change his pants, or take off his shoes, or get him in and out of their car. “At one point, he was infatuated with my slippers and would put them in his mouth,” she says. “It’s very erratic. You have to be able to deal with that.”
Ron didn’t talk much about his time on the pile. After 9/11, son Luke says, his father attended funerals and “wasn’t home a lot.” Dawn believes that Ground Zero triggered his dementia, just as it almost certainly was responsible for the breathing problems he developed in the late 2000s. “He had so much exposure,” she says. Back then, she didn’t think about what was in the air in Lower Manhattan, or how it might be harmful — and even now, she’s not sure her husband would have cared. “If he knew what we know now, do I think he would have done anything different?” she says. “Absolutely not. And not just him. Most of ” the responders.
There is nothing good about Ron Kirchner’s condition. But in exactly one way, Dawn feels fortunate: She can afford to personally care for her husband. The Kirchners have money saved. Ron’s pension and Social Security cover their expenses.
Some of his former fire house colleagues built the family a backyard deck and helped them get a hospital bed for Ron to sleep in at home. Luke and Ava live with their parents, which means Dawn usually can count on a helping hand. “If it wasn’t for my daughter, I’d never be able to take a shower,” she says.
Dementia care can be ruinously expensive. The median cost of a nonmedical home health aide is nearly $50,000 a year, while a private room in a nursing home is roughly $106,000. And even less severe cognitive impairment can make it hard to earn a living.
GETTING HELP
John Feal, a construction worker who was seriously injured at Ground Zero in the days following 9/11, has since become a leading advocate for responders.
Every September, he organizes a ceremony at the granite memorial wall for people who died of illnesses related to 9/11 that he helped build in Nesconset, N.Y. “I see the same guys each year, and the physical and mental differences are so evident,” he says. “They are so macho and full of bravado that they will say otherwise. But they are not the same people.”
Working with other responders and former “Daily Show” host Jon Stewart, Feal was a driving force behind the James Zadroga 9/11 Health and Compensation Act, a 2011 federal law that provides health care to 9/11 responders and survivors through the World Trade Center Health Program, as well as money through a victim compensation fund. To date, that fund has paid nearly $8.7 billion to about 40,000 sick or dying people, and the number of 9/11-related illnesses it covers has expanded over time.
But cognitive ailments are not among them. “As people become more and more impaired, they may need more and more care,” Clouston says. “But none of that is provided. You are on your own.”
For that to change, as it did in 2012 when 50 types of cancer were added to the list of covered conditions, the National Institute for Occupational Safety and Health and a special scientific advisory committee will need to see more and better evidence that what is happening to Ron Kirchner and others began on 9/11. That will require more research and more time.
“To put a new condition on our list, you have to show that it is substantially likely to be causally related to [9/11] exposures,” says institute director and health program administrator John Howard. “That means we can’t explain it in any other way.”
A physician now serving his third term as the institute’s director, Howard was appointed by President George W. Bush to coordinate the earliest federal response to the health effects of 9/11 and has overseen the health program since its creation. He says the program is concerned about cognitive impairment among responders and eager for researchers to answer the questions surrounding it. “Without them,” Howard says, “we would be blind.”
When Ron was first becoming forgetful, Dawn would tape family photos to their kitchen cabinets: This is Ava, our daughter. This is Luke, our son. She would look her husband in the eyes and show him her wedding ring. “We’re married,” Dawn would say. “Oh!” Ron would respond, surprised but pleased. “That’s good.”
Sometimes, Ron still laughs when Ava makes funny voices. But it’s hard to know what he’s responding to, or why. For the Kirchners, 9/11 never really ended — and in the future, Dawn fears, her family will have company. “It’s not an official World Trade Center illness yet,” she says. “But it will be.”