Michael O’Connell, 50, has spoken out about the autoimmune disease that struck him six years after he worked the pile at Ground Zero.
The former New York firefighter was just 25 years old and still a probationary FDNY member when the towers fell on September 11, 2001. He rushed from his Long Island home to join the search through the wreckage, spending weeks looking for survivors. O’Connell, who had joined the department after three years with the NYPD, had already faced tragedy that summer when three FDNY members died in the Father’s Day Fire at a Queens hardware store on June 17, 2001. An instructor had told him then that it would be the worst loss the firefighters would experience in their careers. Three months later, 343 of his brothers were gone.
“The thing that stands out the most to me and what changed my life is hearing my brothers’ PASS alarms ringing under that pile and we couldn’t get to them,” O’Connell said. PASS stands for Personal Alert Safety System, an alarm firefighters use to signal they need help.
The attacks killed nearly 3,000 people, and thousands more were injured. Twenty-five years later, many first responders continue to suffer health effects from exposure to toxic conditions at the site.
For O’Connell, the physical toll arrived suddenly. During New Year’s Eve with friends in 2007, six years after his time at Ground Zero, his body turned on him overnight. He woke to what doctors would eventually identify as sarcoidosis, an autoimmune disease that causes granulomas to form in the lungs, lymph nodes, skin, eyes and other organs, according to the Cleveland Clinic.
“It really came on in one night,” the father of three recalls. “The next morning, I woke up to the disease In the five or six hours that I fell asleep, something attacked my body. It was almost as if somebody came into the room that night and beat me up with a baseball bat.
“My body was swollen probably two times the size of what it was the night before. I had blotches all over my body and high fever. Obviously, something was wrong.”
Doctors initially could not see his lungs on x-rays because his lymph nodes were so swollen. The presentation looked like advanced lymphoma. A pulmonologist finally identified the condition as sarcoidosis. At first, physicians did not think he would survive given how far the disease had progressed.
The illness forced O’Connell to retire from the fire department. He is now married to Rebecca and father to Aidan, Colton, and Allie.
He has redirected his energy into advocacy for the 9/11 community, working alongside John Feal of the FealGood Foundation, which helps first responders and survivors access healthcare and benefits. The pair have testified before Congress in support of continued healthcare funding for those affected by the attacks.
“What I recognized so much sooner in life, and something I tell people now being 50 years old and being a father of three, is that life is so fragile. It doesn’t matter how much money you have and where you take yourself in life and the amount of houses you own, it really comes down to your relationships and making your mark on life,” O’Connell said.
He wants younger generations to understand that heroism does not require catastrophe.
“I wish the youth could understand that you don’t need another 9/11 to show that you could do that. It doesn’t have to be, you know, fighting terrorism or running away from a horrible scenario like that, like buildings coming crashing down on you. You could help the person next to you. You can lend a hand. We weren’t put on this Earth to figure out who can make the most money. We were put on this Earth to help one another,” he says.
O’Connell still frames the aftermath in terms of what emerged from the darkness.
“9/11 was such a horrific day, but for me, what came out of it was 9/12, and a whole world embracing what happened and recognizing that this was good versus evil and it didn’t matter who you are, what you look like, what political affiliation you came from, what the color of your skin was, it was if you were a good person, you put an arm around the person next to you and tried getting somebody through that,” he says.
He now advocates so that “everyone affected by that day will not get left behind and those that we lose along the way know that we will NEVER FORGET!!!”
O’Connell and Feal continue their push for permanent healthcare funding for 9/11 responders and survivors.