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When the second plane hit the World Trade Center on September 11, 2001, Terence Opiola rushed downtown. He had no idea how long Ground Zero would stay with him.
Opiola was a U.S. Customs agent working out of World Trade Center Building Six. He happened to be out that day, but he was called in to help with search and rescue.
He spent the next days digging through the rubble of the Twin Towers looking for bodies. He ended up working more than 700 hours between Ground Zero and a Staten Island landfill where the buildings’ wreckage was transported.
His reward for that miserable work: Cancer, early retirement, constant pain and exhaustion.
For most Americans, 9/11 was a horrific tragedy that’s faded into the rearview in the two decades since. “Never forget” has slipped to “sometimes remember.” But Opiola—and tens of thousands like him—carry the fallout with them every day.
“Any time I cough or I can't get out of bed—everything reminds me of it,” he said. “There isn't a church that I drive by where I don't bless myself and be thankful that I'm still here. And that's because of what I went through.”
Opiola is one of 65,000 responders and victims who lived near the World Trade Center and now have 9/11-related health problems—and one of 24,000 who have been diagnosed with at least one type of cancer. They had to fight for a decade to get federal government help, and battle again in 2015 to keep that money flowing. Now, the health program that covers their illnesses is facing another funding shortfall—one that could force Opiola and other survivors to drag themselves to Washington one more time to shame Congress into more funding.
More people have likely died from 9/11-related illnesses than died on the day of the attacks, according to new data released by the federal government’s Victim Compensation Fund. More than 3,904 claims for people believed to have died from 9/11-related health conditions, compared to the 2,977 who died on 9/11 itself.
“We knew for years there’d come a time when the number of people who died prematurely would surpass those that died on that day,” said Ben Chevat, the head of Citizens for Extension of the James Zadroga Act, which fights for federal help for 9/11 victims.
“People think this is something that happened in the past,” he continued. “But it’s still happening today, having an effect on thousands of people—both responders who came from all over the country and people who lived in the neighborhood.”
Opiola had taken a day off work for a golf tournament on the day of the attacks. As he drove in that night, he could smell the acrid smoke even before he got to the George Washington Bridge to enter Manhattan.
“That's when I got my first taste of being down at Ground Zero, which was a war zone,” he said.
The closer he got, the harder it became to see from the smoke and the heat from underground fires. He began digging through the rubble, passing buckets to other responders and volunteers to bring to a makeshift morgue inside a Brooks Brothers store.
“You would look at these suits for four thousand dollars, and we're bringing in things in buckets which we think may be human remains,” he said.
The work was dangerous and surreal.
“If you went down into the building, orientation was really scary. You try to stay away from the heat because there were these fires that were burning thousands of degrees still underground,” Opiola said. “Your mission was to go in there and see if you could find—it was really bodies. Initially, it was bodies.”
“You would look at these suits for four thousand dollars, and we're bringing in things in buckets which we think may be human remains.”
Hours would go by, then he’d suddenly find a wallet, or a shoe, or a bone, that could identify another casualty.
Opiola’s office building at Six World Trade Center had been sliced in half by antennae from the fallen North Tower, but his office itself still stood—he could even see his wedding photo on his desk.
Seven World Trade Center had yet to collapse when Opiola arrived on September 11—it didn’t fall until that evening—and officials worried other buildings might fall too. Every so often a horn would sound, and responders would go sprinting through the dust to get to safety.
“Guys would be flying at you because they thought these buildings were still going to collapse,” Opiola said.
He was tasked with removing what evidence, guns, and drugs he could recover from the surviving Customs vaults, and worked to make sure all his co-workers were safe. Some were in such shock that they didn’t respond to knocks for days, then would suddenly answer their door still covered in soot and dust.
After the initial search-and-recovery efforts waned, Opiola moved over to Staten Island, where a dump had been repurposed into a football field-sized grid where he and others searched for remains.
Within weeks, he had what’s known by first responders as the World Trade Center cough. “The cough was brutal and the cough was producing just black stuff,” he said.
It was the first in an ever-growing list of health issues.
In early 2002 Opiola was pulled off the Staten Island site because of his cough, and instead he ferried evidence found at the landfill to the Customs office. Months later, he returned to his normal work at the Customs office: Investigating drug smuggling, predatory child proliferation, money laundering, transnational gang activity, and terrorist networks.
After a decade of work, Opiola got his dream job running New Jersey’s Customs field office, with 300 employees under him.
But his health kept deteriorating. Severe night sweats, fever, and chills kept him from sleeping. Fatigue overtook him. Doctors found nodules on his lungs.
“I was going into the office and I was having to have meetings and get briefed on stuff and then close my door and try to close my eyes because the fatigue was so bad,” he said.
In 2017, at age 49, his health problems forced him to retire.
In 2017, at age 49, Terence Opiola's health problems forced him to retire. (Sam Stonefield for VICE News)
Opiola’s resume made him an attractive hire for big corporations, but he turned down lucrative offers because he wasn’t healthy enough to work.
Opiola described himself as the “poster child” for the healthcare program. Besides leukemia and skin cancer, he’s coping with a variety of breathing and digestive issues common to 9/11 survivors: asthma, serious acid reflux, chronic obstructive pulmonary disease (COPD), and severe obstructive sleep apnea that makes rest difficult and can leave him feeling exhausted.
His health kept deteriorating. Severe night sweats, fever and chills kept him from sleeping. Fatigue overtook him. Doctors found nodules on his lungs.
The latest on the list is rheumatoid arthritis, which makes it harder to walk and leaves him in constant pain. He sees nine different doctors through the healthcare program to manage his chronic issues.
“I wake up in pain and I go to sleep in pain,” he said. “It’s become a way of life.”
A week after the 9/11 attacks, Environmental Protection Agency administrator Christine Todd Whitman put out a statement telling New Yorkers “their air is safe to breathe and their water is safe to drink.” A few days earlier, she’d told reporters that “The good news continues to be that air samples we have taken have all been at levels that cause us no concern.”
New York City Mayor Rudy Giuliani insisted that Ground Zero remained under city control, and while PPE was provided the city never required masks onsite. Giuliani, like President George W. Bush, toured the site without masks, setting an example. Wall Street reopened for trading less than a week after the attacks. Local businesses were encouraged to return. Stuyvesant High School, just blocks away, reopened a month later.
Whitman defended her actions for years. In 2016, she shifted a bit.
“I’m very sorry that people are dying and if the EPA and I in any way contributed to that, I’m sorry,” she said. “We did the very best we could at the time with the knowledge we had.”
Opiola told VICE News that he was given paper masks, gloves, and a helmet when he arrived onsite on 9/11. Customs gave him a mask with a filter, but it wasn’t fitted properly, so he deemed it useless. He, like many responders, skipped wearing the masks on offer because the extreme heat made it difficult to breathe with masks on, though he said doctors have told him that it likely wouldn’t have made much of a difference anyway. No matter how much he showered when he came home, he could never fully get the soot out of his ears and nose.
He said he knew at the time that Whitman and others weren’t being straight about the risks.
“There's no doubt we were lied to,” Opiola said.
It took almost a decade of begging and public shaming from survivors and victims, but Congress finally passed legislation to help them in 2010. The Zadroga Act, named after NYPD detective James Zadroga, who died from cancer after working at Ground Zero, created two programs: the Victim Compensation Fund (VCF) and the World Trade Center Health Program. Because some Republicans balked at fully funding it, the program had to be reauthorized after five years.
Opiola is enrolled in both programs, and he was among the sick survivors forced to trudge to Washington to make sure the programs were kept open in 2015.
“I don’t think we fully understood the scale of this. I don’t think anyone could really have envisioned the scale of this.”
When the healthcare program was extended that year, it had enrolled 75,000 people. In the six years since, another 36,000 first responders and survivors from the neighborhoods surrounding Ground Zero have joined, leaving the program at 112,000 people, including 65,000 with a 9/11-related condition and another 50,000 who aren’t sick yet but are being monitored in case any diseases develop.
Even those who led the original push to create the programs had no idea how many people would need them.
Chevat was chief of staff for New York Democratic Rep. Carolyn Maloney when she introduced the first 9/11 survivor bill in 2004, helped run her effort to push the bill into law in 2010, and led the lobbying charge for its renewal in 2015.
“I don’t think we fully understood the scale of this. I don’t think anyone could really have envisioned the scale of this,” he said. “Had there been acknowledgement of this [by the federal government] and the work been done we would have better understood the scale.”
Chevat, Opiola and other advocates are now bracing for another battle. While the World Trade Center Health Program was reauthorized for the foreseeable future in 2015, it’s currently facing a potential funding shortfall of $2.8 billion in the coming years. That’s both because the rising cost of healthcare has outpaced predictions, and because so many more people have needed the program in recent years. The bill has wide bipartisan support, from New York Republican Rep. Elise Stefanik to New York Democrat Alexandria Ocasio-Cortez, and isn’t expected to be nearly as heavy a lift as the original fights, and House Democrats are pushing to include it in their $3.5 trillion budget bill. But sick and wounded responders shouldn’t have to fight at all.
“9/11 responders and survivors should not have to come down and walk the halls of Congress again,” Chevat said. “I have every expectation that they should understand it now. It should not be a struggle.”
That funding shortfall is partly due to the program’s growing effectiveness at educating people that it’s not just first responders but any New Yorkers who lived below Canal Street in Manhattan and in certain parts of Brooklyn that they’re eligible.
But the rising number of enrollees also shows that even 20 years later, 9/11’s shadow continues to grow.
“These people went in, especially the first responders, to save people. And now they have illnesses and they're dying from them and it's not stopping,” Opiola said.
Opiola is grateful for the programs. Though he’s been frustrated that the VCF hasn’t been willing to pay out to make him financially whole, and his case is under appeal, Opiola considers the healthcare program a godsend.
But while they’ve helped ease the financial burden of an early forced retirement, covered what would otherwise be a massive medical cost, and provided world-class care, the programs can’t fix his health.
“I have a young family, young kids, and I want to be around as long as possible. But right now, there are no magic pills that I can take to make these things go away,” Opiola told VICE News.
His children are 18, 16 and 12. While the silver lining of retirement means he can be home much more with his family, two of his kids are athletes—just like he was— and he gets frustrated that he can’t be more active with them. That’s harder with his younger son.
“These people went in, especially the first responders, to save people. And now they have illnesses and they're dying from them and it's not stopping.”
“It hurts me that I have to tell him that I can't throw the ball today. I can't run, because I can't breathe,” he said.
Opiola has only been back to Ground Zero once since it reopened to the public. He hates the Freedom Tower, calling it a “ridiculous building,” and is furious that they forced the U.S. Customs office back into the building when it was opened. The museum also bothers him.
“It should be a park, a burial ground,” he said. “That should have been a graveyard from the get-go.”
Just being there was difficult.
“It was emotional and I couldn't wait to get out. I couldn't wait to get home,” he said. “Maybe a lot of stuff I haven't sorted through in my own head.”
Still, he feels comparatively lucky. Five colleagues he worked closely with have died from diseases since the attacks. Many other first responders he knew have died as well.
“We're coming close to the 20th anniversary, and I'm getting these invitations to go to these memorials for the guys that aren't here anymore,” he said. “So I'm blessed. I really am.”