According to a 2017 study, at least 74 firefighters with the FDNY who worked at the World Trade Center site have contracted sarcoidosis
In the crush of chaos after two planes hit the World Trade Center on Sept. 11, 2001, Michael O’Connell raced from his home on Long Island in New York to his firehouse in Queens, where he was training as a probationary fireman for the FDNY.
From there the then 25-year-old joined a busload of firefighters to the burning buildings. During the trip, their chief announced that the World Trade Center’s twin towers had collapsed.
“When we got on scene, it wasn’t like anything I’ve experienced in my life,” O’Connell, now 43, recalls of the monstrous burning piles of wreckage and toxic dust. “It was like being on the set of a movie. It didn’t look real.”
Wearing protective breathing gear was the last thing on O’Connell’s mind. His and the other responders’ first goal was “to save any sort of life you could.”
No one, O’Connell says, had breathing protection for three days, when rescuers were each given dust masks. Two days later they got respirators.
“Not knowing it at the time, you are in a dust cloud of 200 stories of office buildings that came crashing down,” he says — “eating in it, sleeping in it.”
“You are not only breathing it in, it is going through your pores.”
O’Connell worked countless hours at ground zero as the work shifted from rescue to recovery of the remains buried in the rubble.
Despite what has since been confirmed as a widespread, deadly health hazard from work there amid the dust and fumes — and despite his own health struggles, years later — everyone O’Connell knows would go back and do the same work without a second thought, he says.
“You realize you had a job to do for the families,” he says, “and for the country.”
‘Something Is Really Wrong’
Six years after the attacks, on Jan. 1, 2007, O’Connell — by now married and with his first child on the way — woke up “feeling like someone came into the room that night and beat me up with a baseball bat.” His body ached all over.
“My hands, ankles, back were so sore,” he remembers. “I got out of bed and felt, ‘Something is really wrong.’ “
Hours later, doctors at a local hospital told him it looked like he had an advanced case of lymphoma. He likely didn’t have much longer to live, they said.
“I was devastated,” he tells PEOPLE now. He thought only of the boy he and his wife were expecting: “Give me long enough to see this baby.”
That same day, a pulmonologist surmised — and then confirmed with tests — that his lymphoma diagnosis was wrong.
O’Connell in fact had a disease called sarcoidosis, described by The Mayo Clinic as the growth of tiny collections of inflammatory cells (granulomas) in any part of the body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs.
Though other responders had already fallen ill, O’Connell says he was one of the youngest and first firefighters in the history of the FDNY to be diagnosed with sarcoidosis.
According to a 2017 study, at least 74 firefighters with the FDNY who worked at the World Trade Center site have contracted the disease.
“They know it’s airborne,” O’Connell says. “Whatever you were breathing in caused this.”
Sept. 11-related health issues don’t stop there: O’Connell is one of some 40,000 people with conditions linked to working in the massive rescue and recovery operation when the World Trade Center towers collapsed in the deadliest part of the 9/11 attacks.
Among those are 10,000 responders and volunteers who have developed various cancers associated with exposure to the toxins from the debris, according to Dr. Michael Crane, medical director of the World Trade Center Health Program at the Icahn School of Medicine at Mount Sinai in Manhattan. People have also been diagnosed with respiratory illnesses and mental health issues, such as post-traumatic stress disorder.
Crane says he does not have a total figure of deaths from 9/11-related illnesses. But John Feal, a 9/11 first responder and outspoken advocate for those who worked at ground zero, says that more than 2,100 responders have died of a 9/11-related condition.
In those initial months after O’Connell’s diagnosis, after months of treatment, his painful symptoms dissipated and he returned to fighting fires. A year later, however, smoke exposure while putting out a high rise fire in Manhattan triggered the sarcoidosis to flare up, landing him in the hospital again.
That was the end of his firefighting career, as the department couldn’t put him at risk for another flare up. Rather than stay on the force doing office work, O’Connell retired as a lieutenant to stay at home with his growing family. (He and wife, Rebecca, 43, who works in finance, now have three children.)
“After I got sick the second time, seeing people getting cancer, I said, ‘I think I should just stay home,” he tells PEOPLE. “‘God forbid my life gets cut short.’ “
Fighting for Others
In the decade since, O’Connell has drawn on a small pension from his FDNY career. He was also compensated by the September 11th Victim Compensation Fund, which the federal government set up for survivors and responders grappling with the numerous health issues arising from recovery and cleanup efforts during 9/11.
Unlike O’Connell, however, many other responders — including construction workers and day laborers — are without pensions and over the years have seen the September 11th Compensation Fund payments diminished and threatened to end.
That’s what has driven O’Connell for the last five years to go to Washington, D.C., to push for continued funding for the 9/11 responders.
“We are seeing people dropping like flies,” says O’Connell, “and we need to take care of them.”
The fund has already paid out billions but is set to run out of money more quickly than expected, given the escalating claims from patients. Lawmakers have proposed extending funding into nearly the next century.
“We told him it is his obligation that these people are taken care of,” O’Connell says. “He gave us his word he would get the bill passed by August.”