25 Years After 9/11, Benjamin Luft Reflects on a Legacy of Healing and Listening

Luft was a guest of the Voices of Transparency and Excellence podcast

On the morning of September 11, 2001, Benjamin Luft, MD watched from his 16th-floor office in Stony Brook's Health Science Center as smoke rose in the distance from New York City. As chair of the Department of Medicine, Luft and his colleagues were preparing for what they believed would be an overwhelming influx of injured survivors. They began making room in the hospital, discharging patients who could safely receive care elsewhere and preparing for potentially thousands of people in need of treatment.

Then they waited.

"I remember calling down to the emergency room, calling down to the dean's office, asking, when are the casualties going to start arriving? When do we have to be there? When do we have to prepare?" Luft recalled. "And they said no one's come yet. And that was very eerie."

Twenty-five years later, Luft - director and principal investigator of the Stony Brook World Trade Center Health and Wellness Program - reflected on that day and the decades of work that followed during a special episode of Stony Brook University's Voices of Transparency and Excellencepodcast. Hosted by Judi Brown Clarke, vice president for equity and inclusion and chief health equity officer, and Rick Gatteau, vice president for Student Affairs, the episode explores Luft's experience on September 11, the creation and evolution of Stony Brook's World Trade Center Health and Wellness program and his work to preserve the voices of the responders he has treated.

Luft's work with responders began with a problem brought to him by local labor leaders. Workers who had volunteered at the World Trade Center site were becoming sick, they told him, but because some had gone to Ground Zero as volunteers rather than as part of their jobs, their health insurance would not cover their medical care.

"I said, 'That's a big problem,'" Luft recalled. "And we talked about it and we talked about these people. And I said, 'We'll take care of them.'"

Luft and other volunteers within the Department of Medicine began seeing responders through Stony Brook's small occupational medicine clinic. In the first year, he estimates they cared for between 500 and 1,000 people. "I couldn't really ask people to do this," Luft said. "It wasn't part of their job description."

Instead, members of the department, including Luft, volunteered. "We went there, we established a clinic, and we asked for volunteers," he said. "The clinic was the beginning of the World Trade Center Health Program."

Today, Stony Brook's program cares for approximately 16,000 responders in Nassau and Suffolk counties, with clinical centers in Commack and Westbury. But much of what Luft and his colleagues learned about caring for responders came from listening to the patients themselves and recognizing when their experiences did not conform to what medicine expected.

"When I began to hear what their complaints were, and to kind of not try to fit them into the medical textbook, but to hear them and say, 'they don't fit.' I have to understand this. We have to understand what's going on,'" Luft said. "It was then that we began to develop a really good program."

Responders suffered respiratory, gastrointestinal, sinus, eye and skin problems following exposure to dust, debris and carcinogens at Ground Zero. Over time, Luft said, some respiratory illnesses progressed from persistent coughs to asthma, chronic obstructive pulmonary disease and pulmonary fibrosis, with some patients ultimately requiring lung transplantation. But there was another dimension to their illnesses that captured his attention: Responders who developed post-traumatic stress disorder along with physical illnesses often experienced a more severe course of disease.

"What was obvious to me was that the amount of disease that they were reporting was disproportionate among certain groups," Luft said. "One of the groups were people who had PTSD, and if you were down there on 9/11 and had these very traumatic experiences and developed PTSD as well as a physical problem, your course was much more severe than if you did not."

Unlike a traumatic event that occurs in a matter of seconds, Luft said, many responders experienced physical and psychological trauma simultaneously and repeatedly. They were exposed to dust, fires and other hazards while witnessing death and destruction around them, and that trauma did not necessarily end when the towers fell.

"You have to realize these people were recurrently traumatized over and over and over again," Luft said. "And it didn't just go on for the moment that the buildings came down. It went on for days, if not months."

Those observations helped shape more than two decades of research at Stony Brook examining the relationship between psychological trauma and physical disease. The program has followed responders clinically, socially, psychologically and physically while developing an extensive biobank to help researchers understand the long-term consequences of World Trade Center exposure.

Luft said that research has revealed a biological connection between the psychological impact of 9/11 and physical illness. Twenty-five years later, he said, about 10 percent of the program's patients continue to experience PTSD, with researchers also studying cognitive problems and dementia among responders.

After seeing media accounts that he believed reduced responders to political stereotypes, he decided the people he knew as patients needed the opportunity to tell their own stories, and his work then moved beyond medicine and research.

"I came into the office and I was upset, and I said, 'I want them to tell their own stories,'" Luft recalled. "I wanted to give them a voice."

Luft and his team transformed part of his office into a makeshift studio, bought a camera and lights and sought guidance on how to record oral histories. Clinic employees took on roles behind the scenes, and responders began sitting down to describe what they had experienced. What Luft heard was very different from the portrayals that had sparked the project.

"The stories were so powerful," he said. "I heard things about courage, about camaraderie, about guilt, about love. And these were, for me, it was almost like taking a civic lesson. You began to hear all of these things about volunteerism, selflessness."

Those interviews became the Remembering 9/11 Oral History Project. Approximately 500 oral histories are now archived in the Library of Congress, preserving first-person accounts from the men and women who responded to the attacks. The project also attracted national attention, including a 60 Minutes segment marking the 10th anniversary of 9/11.

"There's no politics, there's no partisanship. This is what happened," he said. "And when you hear from people who saw it and lived it, you basically become a witness of the witness."

The oral histories also helped inspire Luft's book, We're Not Leaving: 9/11 Responders Tell Their Stories of Courage, Sacrifice, and Renewal, and the documentary 9/11: An American Requiem, which uses responders' firsthand stories to preserve their experiences and the lessons that emerged from them. The documentary will return to the Staller Center Main Stage on September 10 at 7 pm for a special screening, part of Stony Brook University's September 11 commemoration.

As the anniversary approaches, Luft said the decades he has spent caring for responders have brought sadness, but also inspiration. "One thing I want to just emphasize: It hasn't been totally sad," Luft said. "There are sad parts to it for sure, but there's so much inspiration that you derive from working and taking care of these remarkable people. For me, it wasn't a job. It was a privilege. It enriched me. I'm better for it."

After more than two decades of clinical care, research and preserving the experiences of responders, Luft said the work remains unfinished. He hopes to pass on to the students, physicians and researchers who follow him a willingness to listen.

"For me, it's always about seeing the unseen, hearing the unheard and listening," Luft said. "I'm hoping that with all the people that have come through the program, students, doctors, that they'll be able to carry on, to be able to embrace that, to be a little bit less arrogant, to have humility, to listen, and to be directed by your colleagues, your patients and the world around you."

- Beth Squire