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Haunted by 9/11 mental trauma, 'the girl I knew is gone'

Renee Totaro retired from the NYPD in 2004.

Day after day in the months following the Sept. 11, 2001, terrorist attacks, NYPD Officer Renee Totaro was surrounded by images of death and destruction as she worked at Ground Zero.

The horrific scenes she saw, and the gut-wrenching fear that she could be trampling on human remains as she walked through the area, never left her mind, she said. They consumed the now-retired Yaphank woman’s life — and have turned her into a withdrawn and anxious person she still hasn't accepted.

"The girl I knew is gone," Totaro, 52, said of her pre-9/11 self. "She’s not coming back."

Totaro retired from the NYPD in 2004 because of vision problems that doctors told her were exacerbated by 9/11. Twenty years after the attacks, she and thousands of others traumatized by 9/11 struggle psychologically, as well as physically.

What to know

More than 17% of those enrolled nationwide in the federal World Trade Center Health Program have been certified as having a mental health condition as a result of 9/11.

Experts say the actual number of people with 9/11-related mental health conditions is much higher. Many police officers, firefighters and other responders avoid seeking help because they view doing so as a sign of weakness, experts and responders say.

Post-traumatic stress disorder, panic attacks, anxiety and depression are among the most common 9/11-related mental health conditions, experts say. In addition, some turn to alcohol or other drugs to cope.

More than 17% of the 112,042 people who have enrolled nationwide in the federal government’s World Trade Center Health Program were certified as having a mental health condition as a result of 9/11, according to data as of June 30 from the Centers for Disease Control and Prevention, which noted that hundreds of thousands of others who could have psychological or physical problems haven’t signed up for the program. The project provides physical and mental health care to those who were at and near the site during and after the attacks.

The real percentage of people with 9/11-related mental health conditions is much higher, said Dr. Frank Dowling, a psychiatrist based in Islandia and Garden City who treats patients referred by program sites run by Stony Brook Medicine in Commack and Mineola.

"The vast majority of them have not sought help," Dowling said, referring to police, firefighters and other responders who grapple with mental health problems.

That’s partly because of the perceived stigma of seeking assistance, said Peter Haugen, a clinical psychologist and director of mental health at the WTC health program at the NYU Grossman School of Medicine in Manhattan.

"There are a set of values that are part of what you might call responder culture that privilege things like mental toughness and dependability, and an ability to control one’s emotions," Haugen said.

"Being able to express and identify and communicate feelings, in particular to someone who isn’t a co-worker, is often seen as a weakness, a moral failing, a source of shame, and these folks oftentimes can feel like it’s even a betrayal of their brothers or their co-workers: ‘I am weak and someone who can’t be depended upon by my colleagues in difficult situations,’ " he said.

Police officers are worried a mental health diagnosis will mean their firearm will be taken away and they’ll be shunted to a desk job, Haugen said.

For years, Totaro resisted therapy before finally relenting.

Totaro was at and near the WTC site off and on through January 2002, primarily providing security. She recalled reddish-brown muddy water that ran through the streets, and was traumatized by stepping on it because she thought it included human blood.

They are images that still haunt her, she said: "Everywhere I go I’m stepping on human remains. I move my right foot, I’m stepping on somebody. I move my left foot, I’m stepping on somebody. I can’t get away from it."

She said she can still smell the putrid, "very thick, strong, heavy odor" of the WTC site.

Totaro typically only leaves home for grocery shopping — which she does at her therapist’s urging, as "exposure therapy" — and to visit her husband’s aunt, with whom she feels safe.

"Other than that, I do not like being outside my own house," she said. "I’m always thinking something’s going to happen if I’m driving my car. If I’m driving on the LIE [near Long Island MacArthur Airport], sometimes the planes come down low, and that sends me into a panic sometimes."

After leaving the NYPD, Totaro had trouble doing subsequent jobs, such as a bank teller, because of comprehension and memory difficulties that psychologists told her were a result of 9/11 trauma.

Therapy has helped, but instead of focusing on her progress, she thinks about how happy she was as a police officer, and how she can never get that life back.

"I’m constantly reminded every day that there is something wrong, that I’m not the same person," she said.

Trauma expert: Holding it in can cause problems

Like Totaro did at first, many responders think they’ll "suck it up and get through it," said Mayer Bellehsen, an expert in trauma psychology at Northwell Health who treats 9/11 patients.

Yet holding in emotions can harm relationships and cause problems on the job, he said. Many traumatized by 9/11 have post-traumatic stress disorder, panic attacks, anxiety or depression, or a combination, and some "self-medicate" with alcohol or other drugs, he said.

The anxiety caused by COVID-19, the recent Florida condominium collapse — with the familiar images of digging through rubble and distraught family members — and the 20th anniversary of 9/11 have caused additional stress for many people, spurring some to finally seek assistance, Dowling said. Diagnoses of 9/11-related physical illnesses also can exacerbate symptoms, he said.

Before 9/11, Glenn Tarquinio, 58, of Holstville, was trained to assist NYPD colleagues with psychological problems. So he knew the signs of mental health conditions, and after 9/11, he helped peers cope.

But even he fell prey to the perception that a cop seeking assistance was weak, and it took him six years to enter therapy.

Tarquinio, who also battled 9/11-related prostate cancer, said that at Ground Zero, "What we saw was just brutal."

He saw the remains of many victims, in addition to "notes that said, 'Timmy’s baseball game at 6 o'clock tonight,’ shopping lists … all those things that would be etched in your mind forever, but you didn’t have time to process, because you were digging" through rubble.

Tarquinio became withdrawn and easily agitated after 9/11. He had WTC flashbacks. He lost interest in social activities. He wouldn’t talk with his then-wife about 9/11 "because I didn’t think she would understand it. So I would just try to keep it to myself. It was hard. It’s too much to bottle up. The ship can’t hold that much, and after a while, it starts eating at you."

The effects of 9/11 helped lead to the end of his marriage, he said.

If Tarquinio talked with other police officers about 9/11, it would be about topics such as overtime.

"It was never a deep, emotional heart-to-heart talk," Tarquinio said. "It was typical cop mentality: Be tough, don’t give in to your emotions. If you can’t handle it, you’re …" not strong.

Therapy, he said, "helped me realize what I was going through was normal. They would give me techniques to deal with it. And I would utilize them because I didn’t like the way I was feeling."

Firefighter had 'terror dreams' every night

Retired FDNY firefighter Michael Smith, 63, of Garden City, said he is still haunted by the chilling images and sounds of 9/11. He arrived in the WTC area before the Twin Towers collapsed.

"I stood there, and I was watching people jump, and I stopped counting after like 12 people," he said. "I said to myself, ‘25 years I’m in this business and I felt as helpless as I could ever feel.' You couldn’t do a bloody thing for these people. Nothing."

Smith ran to the south tower and began entering the lobby when he heard a rumbling noise and ran back out, barely escaping before the building collapsed. Debris fell on his back and knocked him unconscious.

He came to and began digging through the rubble for survivors. He found none. For several days, he worked in a tent that served as a morgue, watching as bags containing body part after body part came in.

Smith’s time in lower Manhattan followed him home to Long Island. He had "terror dreams" every night. When his wife dropped a load of laundry from the second to first floor, the thumping noise "sounded very familiar to what I heard when the bodies were hitting the ground. It would send a shiver down my throat and my spine, and it would take me an hour to recover just from the noise."

Smith realized he needed help. Beginning in 2002, he saw a therapist for two years. After trying so hard to forget his Ground Zero experiences, he learned to "come to terms with it. I lived it. I own it."

Six years ago, he began telling his 9/11 story as a docent at the 9/11 Tribute Museum in Manhattan. Today, he said, "I feel great."

But Smith said other firefighters won't seek help. They tell him they don’t need it.

"They’re in denial," he said. "But I promise you, if they hear that sound, they have this issue, they see something, they smell something — there’s nothing different from what I went through and what they went through. It’s got to be slowly killing them."

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