Sept. 11 First Responder Fights On Behalf Of Others Who Rushed To Help | KUOW News and Information

Sept. 11 First Responder Fights On Behalf Of Others Who Rushed To Help

Sep 11, 2017
Originally published on September 13, 2017 10:56 am

Following the attacks of Sept. 11, 2001, first responders rushed to ground zero in Manhattan, where they braved dangerous conditions to rescue people buried in the rubble, retrieve the remains of the dead and clear the debris. Among them was demolition supervisor John Feal.

Feal arrived at ground zero on Sept. 12; just five days later, he was seriously injured when an 8,000-pound piece of steel fell and crushed his foot.

He became septic from the deeply infected wound, and nearly died. The accident cost Feal half his foot — and his job. His despair grew deeper when the government denied him medical compensation for his injury.

Speaking with other first responders, Feal realized that he was not alone. Not only were others also being denied money to help pay for their injuries and illnesses, but the trauma was ruining people's lives.

"They were losing their homes," he says. "They were getting divorced, or separated, or their kids were in rehab for drugs because Daddy or Mommy were miserable."

Feal formed the FealGood Foundation, which advocates on behalf of emergency personnel. He also began working to pressure Congress to pass a bill that would provide compensation for medical care and monitoring for first responders. On Dec. 22, 2010, the James Zadroga 9/11 Health and Compensation Act was passed.

Looking back, Feal thinks about the injury he suffered at ground zero with mixed emotions: "At the time, it was devastating. It altered my life and I thought it was for the worst. But I look back now and it gives me a chance to show everybody how my mother raised me, so I'm thankful."


Interview Highlights

On injuring his foot while working at ground zero

Roughly 8,000 pounds of steel crushed my left foot. ... I jumped and I didn't get all the way out of the way. It caught my left foot. The guy next to me fainted, because the blood was shooting out of my foot about 6 feet in the air. I made a tourniquet. ... I took his belt off and I made a tourniquet below my knee.

Before 9/11, in my mind, I was the world's greatest athlete and I was John Wayne. I was that cool. I didn't think I could even be hurt — and that was a rude awakening for me, physically and mentally. But I was able to get to safety. ... By that time the fire department was there and they put a towel in front of me, I was yelling at everybody to get back to work — "I'll be back in an hour," you know — and it was a very humbling experience.

On remembering the moment the steel beam hit his foot

I can block out my injury. I can block out my five days there [at ground zero]. I can't block out the smell. Probably why I don't sleep enough. When I close my eyes, I can smell ground zero. Everybody always asks what [did] it smell like? There's not a word invented yet that describes the smell of ground zero. ... It's a smell that I've never smelled before or [since]. It's a smell of destruction, devastation, carnage. It was everything combined in one that created the smell.

It's not just me saying this. This is other 9/11 responders and first responders or volunteers who will say the same thing. Especially this time of the year, when I shut my eyes, that smell comes back and it's like it's putting its hand over my mouth and nose, and it gets tough.

On the reoccurring nightmare he had after Sept. 11

This time of the year, this anniversary ... it's tough. Not just for me — it's tough for all 9/11 responders and volunteers and survivors and people who lived and worked down in ground zero. They call these "scars" — they're not scars, they're scabs, and these scabs get pulled right off round this time of the year. It's tough.

You know, when I was going to therapy back in 2002 and '03 and '04 and '05, I had these same recurring nightmares ... where I would see the plane crash; and one day I'd be sitting on a park bench with my dog, the plane would be driving by and I couldn't do anything. Then it was personal. The next day I'm sitting on the park bench with my dog and I would see my mother in the window of the plane waving. Then, little by little, after doing therapy, I was able to get off the park bench and get up and, like Superman, stop the plane from crashing into the building.

On how he became an activist, working to get medical compensation for Sept. 11 first responders

When I was not only going for individual counseling, right after Sept. 11 ... I started going to support groups and I started meeting other 9/11 responders. ...

And then I was telling people about my experience on workmen's comp or social security, and I started helping them. And I started going to their hearings. And then, the next thing you know, I started taking other Sept. 11 responders to somebody else's hearings, and then the judges and the lawyers were like, "Oh here comes Feal, with his crew!"

I look back and it was primitive, but it was effective. Again, at the end of the day I don't apologize or second guess myself, because we're talking about human life. We're talking about human beings who are trying to put food on their table for their kids, or pay their utilities, or put gas in their car to get to a chemotherapy appointment. So it didn't matter what elected official or what lawyer or what judge or what doctor I pissed off, because the only thing I care about at the end of the day is helping people.

On how going to so many funerals has shaped his thoughts on death

I'm not so much into all that biblical religious stuff, but I do believe there's a God. I believe we're here for a purpose, and I believe when we leave there's also a purpose. I think our energy goes to other people and our energy continues. I'm not afraid of dying, no. Listen ... I went to therapy when I wanted to kill myself after getting out of the hospital; those thoughts creep up. I do have my bad days. Would I do it? No. Am I strong enough to stop myself? Yes. But I am not afraid to die, and there are times where I wish I would have died instead of a friend or somebody who left behind four kids. I begged God — my God -- to take me instead of them.

On the importance of remembering the sacrifice of first responders

Most people think on this anniversary that two buildings came down that day and 2,753 innocent lives were lost [in New York City]. ... But since then, about 2,000 [more] people have died because of their illnesses. They, too, are heroes. And in many ways — I talk to a lot of them — they wish they would have died that day, because what they have had to go through and fight, not only their illnesses but the bureaucracy and the poor leadership, and to see their other friends pass away from Sept. 11-related illnesses. These men and women have been through the ringer, through the mill. ...

We call ourselves the greatest nation in the world. But yet we have a strange way of repeating history, and letting veterans come home from war, or 9/11 responders, or just responders now across the nation, how they sacrifice themselves and then we don't take care of them. That's sad.

Amy Salit and Thea Chaloner produced and edited the audio of this interview. Bridget Bentz and Molly Seavy-Nesper adapted it for the Web.

Copyright 2017 Fresh Air. To see more, visit Fresh Air.

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. When America was attacked 16 years ago today, brave first responders came to ground zero to rescue people buried in the rubble and to retrieve the remains of those no longer alive. My guest John Feal got there on September 12. Five days later, he was supervising a crew at ground zero when an 8,000-pound piece of steel fell on his foot, crushing it. He barely survived the gangrene and subsequent infections and lost half his foot. He was unable to return to work. His despair grew deeper when he was informed he wasn't eligible for financial aid to cover his huge medical bills.

After finding that many other first responders were suffering from physical injuries and illnesses caused by the toxins at ground zero but had no financial support to pay their health care bills, Feal became an activist. He formed the FealGood Foundation and began working to pressure Congress to pass a bill that would provide compensation for medical care and monitoring. He made nearly 80 trips to Capitol Hill, sometimes taking with him busloads of other first responders who walked the halls of Congress and met with almost every representative and senator.

In December of 2010, the James Zadroga 9/11 Health and Compensation Act was passed. A month later, the bill's co-sponsor, New York Senator Kirsten Gillibrand, took Feal to the State of the Union address, saying he embodied the spirit of 9/11 workers. After the bill was implemented, Feal started lobbying again, this time for reauthorization of the bill, which was set to expire in five years. That reauthorization was passed in 2015 and will provide medical funding until 2090.

John Feal, welcome to FRESH AIR. How did you end up working at ground zero?

JOHN FEAL: Well, one, thank you for having me, especially...

GROSS: Oh, my pleasure, my honor. Thank you for the work you've been doing.

FEAL: ...Especially on this anniversary. When 9/11 happened, I was about a half an hour outside of New York City in Nanuet doing a large demolition job. And later that night, we started packing heavy machinery and the tools and the equipment needed to go down there and assist and got there on the 12th. And you know, I was in the Army. I'd seen some pretty bad things, but I never saw that kind of destruction, devastation, carnage. I was at awe.

And I saw - you know, people always ask me what I'll take from that - those 5 and a half days that I was there before I was horribly injured is - the grown men - macho, burly, you know, guys with mustaches the size of poodles and tattoos - crying and hugging each other. And I kind of felt out of place. I felt like a little kid. And I did whatever was needed of me to work those 5 and a half days. And...

GROSS: What was your job?

FEAL: I was a supervisor in a demolition company. And at ground zero, I was one of those put in charge to delegate orders from the top to the bottom for the cleanup at building 7.

GROSS: So where were you physically?

FEAL: During those 5 and a half days, I was pretty much all over the 13 acres of ground zero, whether it was moving machinery or making sure that they had manpower to go from one place to another.

GROSS: So describe the accident. Describe what happened to you.

FEAL: You know, my injury, at that time - horrific, gruesome - pales in comparison to those who were sick and died. And I'll always take a back seat to those with these deadly illnesses. Roughly 8,000 pounds of steel crushed my left foot.

GROSS: From where? Like, did it fall? What did it fall from?

FEAL: So we were loading about 250 trucks with steel every 12 hours. And we were pulling out a piece of steel. And depending on the size of the truck, that steel had to be cut to the size of the truck. And one of the pieces of steel were being torched, and it fell over. And I jumped out of the way because if I didn't, it probably would've crushed me or the truck that was backing up would've just crushed me into the steel that already crushed me.

So I jumped. And I didn't get all the way out of the way. It caught my left foot. The guy next to me fainted because the blood was shooting out of my foot about 6 feet in the air. I made a tourniquet because I took his belt off, and I made a tourniquet below my knee - fire department was there within three minutes. And then I had a four-car police escort to Bellevue because the ambulance that took me to Bellevue was from Michigan. And that just shows you the amount of people that came from all over the country to help during the cleanup and the recovery.

GROSS: So the guy next to you just seeing what happened to you, he fainted...

FEAL: Yes, Ma'am.

GROSS: ...Whereas you had the presence of mind to take his belt, make a tourniquet out of it. How did you have the presence of mind to do that? How were even able to remain conscious after...

FEAL: Well...

GROSS: ...A shock to the system like that? You said, like, blood was shooting up, like, 6 feet in the air.

FEAL: Well, I - one, I was 120 over 80. They called it coherent shock. And that's a term I'd never even heard before. But I had first aid training. I was in the Army. I coach wrestling. You know, before 9/11, in my mind I was the world's greatest athlete, and I was John Wayne. I was that cool. I didn't think I could even be hurt. And that was a rude awakening for me physically and mentally.

But I was able to get to safety, take my boot off where the bones were sticking out of my sock. And I don't want to gross anybody out. But I tried to get my sock off, and I was taking my razor blade knife. And by that time, the fire department was there, and they put a towel in front of me. And I knew, you know - I was yelling at everybody, get back to work; I'll be back in an hour, you know?

(LAUGHTER)

FEAL: And it was a very humbling experience. And I - and you know, at the time, it was devastating. It altered my life, and I thought it was for the worst. But I look back now, and it gives me a chance to show everybody how my mother raised me. So I'm thankful.

GROSS: So you know, your foot was incredibly damaged. Like, what was the extent of the damage to your foot? It sounds like every bone in your foot must have been broken.

FEAL: So I spent nine days in Bellevue where I developed gangrene. And they pinned - they put 6 inch pins through my toes. And you're not supposed to pin a crushed injury, little did I know because I don't have a medical degree. And a doctor said I had gangrene, and then I was transferred to North Shore University in Plainview where I fought for my life. I became septic. And little by little, I fought it, but I wound up losing half of my left foot. And that was my consolation. And I consider that a victory. And you will never ever hear me complain.

I've had about 39, 40 surgeries since then on my feet, my knees. I'm arthritic in both hips from the way I walk. I have spinal stenosis from the neck to the spine with a permanent broken back from the way I walk - even donated a kidney to a complete stranger, so never feel sorry for me. But after I got out of the hospital - after 11 weeks in the hospital, going from 185 pounds to about 120, I knew not only was there something physically wrong with me. There was something mentally wrong with me.

And I'm not embarrassed to admit it. After being diagnosed by doctors with post-traumatic, I did EMDR for two years. I went to really strict, hardcore counseling and therapy. And if I didn't do it, I probably wouldn't be here talking to you today.

GROSS: What were your symptoms of PTSD?

FEAL: Depression, mood swings, anger, crying, laughing, feeling lost, confused, not wanting to be with anybody, no friends, no family. You know, I spent 11 weeks in the hospital. Nobody was allowed in my hospital room except for my mother and my sister, not even my other family members or my closest friends were allowed in the there.

GROSS: Wait; wait because you didn't want them or because the doctor said no one was allowed?

FEAL: Because I didn't want them. I was embarrassed, you know? Again, before 9/11, you know, I was captain of the wrestling team. I was the best player on any team, any sport I ever played. And it really humbled me. And it made me realize that I will never be the same person as I was. But I look back now, and I'm not physically gifted like I am or was. But I'm so much better of a person. I'm more giving. I'm more caring. I'm more understanding. And it's easier for me to make conscious choices now where I know it's going to benefit people.

GROSS: It sounds like you have a lot of chronic pain as a result of all of the injuries. In addition to the main injury, your foot, now you have an injured back.

FEAL: So...

GROSS: You have stenosis. You have knee problems.

FEAL: Imagine walking on broken glass barefoot with 800 pounds on your shoulders. That's my day. And I don't take medication. I refuse to put any pills in my body and not only just because I, you know, I donated a kidney. I just don't ever want to be drugged down. I'd rather be in pain. Physically and mentally, I rather be in pain because it's my energy. It's my - it's what I channel towards positive energy. And this not for everybody. And I'm not saying it works for that person. It works for me, and it gives me my edge.

GROSS: Are you able to sleep at night?

FEAL: I sleep better now than when I used to. But you know, this time of the year, this anniversary, you know, a few days before 9/11, today, after this - you know, it's tough not just for me. It's tough for all 9/11 responders and volunteers and survivors and people who lived and worked down in ground zero. You know, they call these scars. They're not scars. They're scabs. And these scabs get pulled right off around this time of the year. And it's tough, you know?

When I was going to therapy back in 2002 and three and four and five, I had the same recurring nightmares. And again, if I didn't do this, if I didn't do that therapy - and I implore anybody who suffers from PTSD not just from 9/11 but in life in general, from a traumatic accident or military veterans, get help. It truly helps. And there are people that are really well trained at that.

GROSS: Were the nightmares you were having reliving 9/11? Or were they other stories that were coming out in your nightmares?

FEAL: Well the same - it was the same recurring dream where I would see the plane crash. And you know, one day I'd be sitting on a park bench with my dog, plane would be driving by, and I couldn't do anything. Then it was personal. And it was, like, the next day, I was sitting on the park bench with my dog, and I would see my mother in the window of the plane, waving, you know? And then little by little, after doing therapy, I was able to get off the park bench and get up and, like Superman, stop the plane from crashing into the building.

GROSS: So you've told us a little bit about the medical problems you had, the extensive surgeries, many surgeries, did you have the money to pay for it? Did your health insurance cover it?

FEAL: So the non-uniform worker which outnumbered the uniform worker 4-to-1 at 9/11 in the days and weeks and months that followed - most of us who lost our jobs lost our insurance. But that's why we have workman's comp and Social Security disability. I was denied those. So half of my foot's in a jar.

GROSS: Wait; wait; wait. Let's stop right there. Why were you denied those?

FEAL: (Laughter) I'm actually telling you like I'm asking you because I was dumbfounded at the time. And that's the reason why I started the FealGood Foundation. That's the reason why I'm here today talking to you - because I was a reaction to their lack of action. Being denied created the advocate John Feal. And I look back now - everything that happened to me, that's happening to people now - it's easier for me to help them. But I was denied.

GROSS: Why?

FEAL: You know, well, because I worked for one company, and I was subbed out to another company who subbed me out to another company at ground zero. So when I got hurt, all three of them went to court to see who wasn't going to pay me, (laughter) you know? I found it comical because they all said they were my friends and that they cared.

But 90 percent of all 9/11 responders who applied for these benefits, get denied. It's 90 percent who appeal win. A lot of them don't have the physical and mental energy to follow through. But now the FealGood Foundation's there to navigate through them, has contacts with all of the congressional and senatorial offices where we can help navigate and ease their pain.

GROSS: How did you become an activist? I mean you'd become a little withdrawn as a result of the shock and the PTSD. You didn't want to be around people for a while. But then you became an activist, being very much in touch with a lot of other first responders, lobbying. I think you met, like, every member of Congress while you were lobbying for a first responder's bill. So what was behind that change?

FEAL: Well, one, I'm an introvert trained to be an extrovert. And I tell that to everybody I meet and they're like, no, no it's not; you're not. Yeah, I am a loner. And I choose to live my life that way. And unless I'm doing an interview or going to a 9/11 event or I go to the gym in the morning or walk my dog, I don't really leave my house. And alone time helps me recharge my batteries.

But you know, when I was not only going for individual counseling right after 9/11 after getting out of the hospital and therapy, I started going to support groups. And I started meeting other 9/11 responders. And while I was only one of a few physical injuries and being the worst, there were those who had illnesses that were invisible. But they were losing their homes. They were getting divorced or separated, or the kids were in rehab for drugs because daddy or mommy were miserable - and then, you know, the old saying - and I hate to cliche this. There's always somebody worse off than you.

And then I was telling people about my experience on workman's comp or Social Security, and I started helping them. And I started going to their hearings. And then the next thing you know, I started taking other 9/11 responders to somebody else's hearings. And then the judges and the lawyers were like, oh, here comes Feal with his crew. And I look back, and it was primitive, but it was effective.

And again, at the end of the day, I don't apologize or second guess myself because we're talking about human life. We're talking about human beings who were trying to put food on the table for their kids or pay the utilities or put gas in their car to get to a chemotherapy appointment. So it didn't matter what elected official or what lawyer or what judge or what doctor I pissed off because the only thing I care about at the end of the day is helping people.

GROSS: So you had trouble getting compensated for your medical expenses. And your expenses must have been huge. Do you have a number for how much money you owed?

FEAL: Hundreds of thousands of dollars...

GROSS: Yeah, I figured.

FEAL: ...In medical debt, yeah.

GROSS: And so there was a - like, a cutoff point. And initially there was money set aside for first responders, but I think it was only first responders who were injured within 96 hours of the attack.

FEAL: Correct.

GROSS: And you were injured 120 hours later.

FEAL: Yeah.

GROSS: So because of that extra, like...

FEAL: Yeah.

GROSS: ...24 hours, you were ineligible. What was behind - was the logic behind that cutoff point?

FEAL: You know, at that time, it was devastating because I thought I qualified. And I was turned away. And again, it's another roadblock and obstacle and hurdle that I overcame. They said 96 hours was the cutoff, but how can somebody get sick from 9/11? How did they know it was 96 hours before that because these illnesses are invisible? I had a physical injury. All I had to do was take off my shoe and show them.

But it was - at that time, it was a insult to injury, another blow to my ego, another defeat. But I was never out, you know? And while I continue to take one on the chin for the team, I became more resilient. And the more I was denied personally or see other people get denied, it just fed my energy.

GROSS: Let me just reintroduce you here. If you're just joining us, my guest is John Feal. He was a first responder after 9/11. He had his foot crushed by an 8,000-pound piece of steel and nearly died. Many surgeries later, he became an activist. His health care expenses weren't uncovered, and many other first responders were in the same position. He worked on their behalf and was one of the people who lobbied for a congressional bill that would provide health care funding for first responders. We'll take a short break, and then we'll talk more. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. And if you're just joining us on this 9/11 day, we're talking to John Feal, who was a first responder after 9/11, had his foot crushed by an 8,000-pound piece of steel and nearly died. Many surgeries later, he became an activist working to lobby Congress for a bill that would provide health care funding for the many first responders who had no money and no health insurance to cover their expenses.

So you were one of the activists who lobbied for what's known as the Zadroga Act which was passed in 2010, signed in 2011 to cover medical expenses for first responders. What was your approach in Congress to talking to the men and the women there who were resistant, trying to convince them that first responders really needed this bill and it was just, like, ethically wrong, morally wrong not to pass it?

FEAL: Well, others will call what I did guerrilla lobbying (laughter). I consider it educating our nation's leaders. But in the beginning, it was hard. Listen. Take 9/11 out of the equation. A Republican or a Democrat from the middle of the country or on the West Coast hate New Yorkers. They think New York gets everything and not - blah, blah, blah. But it was tough getting a Republican from Texas or Montana to get onboard with the Zadroga bill in 2010.

And listen. We got lucky. We - with the help of Jon Stewart - Jon asked me to come on his show. I said no. I gave him four 9/11 responders. And that was a huge hit. Following day, Shep Smith from Fox News followed up what Jon Stewart did. Next thing you know, the 24-hour news cycle is now putting pressure on Republican leadership. So it was a domino effect, but that's how we got it done in 2010.

GROSS: How did Jon Stewart get in touch with you? Do you know why?

FEAL: Oh, yeah. His producer called me, said, Mr. Feal, Mr. Stewart would like to talk to you. I said, OK. He's like, John Feal, this is Jon Stewart. And he was eating a sandwich. And he's like, check this out. You're going to come on my show. We're going to embarrass Republicans. We're going to get the bill passed. And I said, Sir, I am humbled. If I ever write a book, I'd love to come on your show, but I can't.

GROSS: (Laughter).

FEAL: He said, what do you mean you can't come on my show? I said, well, I got to finish what I started. I'll be in D.C. tomorrow. He goes, I like that - a man of integrity. But give me four guys. We'll put them on the show. We'll embarrass Republicans, and we'll get the bill passed - exactly. He didn't miss a beat.

And I vetted four guys, put them on the show. And John dedicated that whole show to them. And ever since then, I've become close friends. I actually texted Jon this morning for him to listen to this, and he's listening. So to somebody with his stature and his resources to make himself available to the 9/11 community, I'm forever grateful and humbled.

GROSS: My guest is John Feal, a 9/11 first responder who became an advocate for first responders who were injured or sickened at ground zero. He founded the FealGood Foundation with the mission of assisting emergency personnel. We'll talk more about how 9/11 changed his life, including why he donated a kidney after we take a short break. I'm Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. I'm Terry Gross. As we keep everyone in our thoughts who has been in the paths of hurricanes Harvey and Irma, we're also reflecting on the 16th anniversary of 9/11. Let's get back to my interview with John Feal, a first responder at ground zero who oversaw a crew looking for survivors and remains in the rubble. An 8,000-pound piece of metal at ground zero fell on his foot, crushing it. He lost half of his foot and nearly died from subsequent infections. But he wasn't covered for his medical expenses, which led him to become an activist, lobbying for a federal health and compensation bill for first responders. Jon Stewart, when he was hosting the Daily Show, became an advocate for the cause and worked with Feal. Their efforts helped lead Congress to pass a health and compensation bill in 2010, but it was set to expire in five years.

In 2015 when you were seeking reauthorization for the bill 'cause it was expiring, Jon Stewart was back with you. In fact he went with you to Congress and knocked on the doors of several of our congressmen and women with cameras, asking to be interviewed. And I think the goal was both to pressure and to embarrass. So what was that experience like for you, and what was the reaction you got from the aides - from the congressional aides when you were there with Jon Stewart compared to the reaction you'd get when you were there just by yourself and with other fellow 9/11 responders?

FEAL: Well, you know, Jon definitely, again, shinned light on our issue. You know, just so you know, I had anywhere from five, 10, 15, sometimes 40 guys with me in D.C. Everybody got a nickname because I could never remember everybody's name. Jon wanted to be part of the team when he was embedded with us. And Jon's first words were, Feal, give me a nickname. Give me a nickname. I don't - your nickname's Colbert.

(LAUGHTER)

FEAL: And then he kicked me in the shin. But Jon went into those meetings with us. And the first couple of meetings, he watched how we did it. And by the eighth or ninth or twelfth meeting of the day, he got it. And he was - he took a - he's a take-charge type of guy. And he's a fast learner. But Jon saw the pain and suffering that we were going through. But what separates 2015 from 2010 - we had statistics. We had facts.

I would take people from a state and have them come to D.C. and show that member of Congress or go into their home office. You know, 433 out of 435 congressional districts were represented at ground zero. There's over 70,000 people now in the country that are in the World Trade Center Help Program, in the national program. So the hold up in 2015 was Republican leadership playing games because Mitch McConnell. And we had a meeting with Mitch McConnell.

GROSS: Yeah, McConnell wouldn't bring the bill to the floor even though there was a majority that would support it.

FEAL: We had 70 co-sponsors. We had a two-thirds majority in the House and the Senate. How do you get 70 co-sponsors in the Senate and over 300 and something in the house and have a bill sitting there, dying and then finally getting attached to the omnibus at the end of the year? It was insulting.

GROSS: So your lobbying was very effective in getting the first responders' health funding extended in 2015. And now the reauthorization of the bill extends those benefits to 2090. So what's the next step for you?

FEAL: Well, I mean right now we're still advocating and petitioning the scientific technical advisory committee to get more illnesses added to the bill - neuropathy, autoimmune, cardiovascular. These are illnesses that we feel need to be added to the bill. But then again, in three years, two and a half years, we will be back in D.C., fighting a new member of Congress in the Senate to get the bill extended for the VCA.

You know, most people think on this anniversary that two buildings came down that day, and 27,053 innocent lives were lost - 343 firefighters, 23 police officers, 37 Port Authority officers. Everybody just thinks these men and women died. And they did. And they died because of senseless violence. But since then, about 2,000 people have died because of their illnesses. They, too, are heroes. And in many ways - I talked to a lot of them. They wish they would have died that day because what they have had to go through and fight - not only their illnesses but the bureaucracy and the poor leadership and to see their other friends pass away from 9/11-related illnesses - these men and women have been through the wringer, through the mill.

And you know, it's - I'm disheartened sometimes because in my mind, I'm the most patriotic person I know. And we call ourselves the greatest nation in the world, but yet we have a strange way of repeating history and letting veterans come home from war or 9/11 responders or just responders now across the nation - how they sacrifice themselves, and then we don't take care of them. That's sad.

GROSS: In spite of the fact that your body was so injured after the 8,000-pound piece of steel fell on your foot, you donated a kidney to...

FEAL: Yeah.

GROSS: ...Another first responder.

FEAL: Originally it was supposed to go to a first responder. It wound up going to a woman in Connecticut.

GROSS: Oh, yeah because it was a swap. So, like, take us back to the beginning of the story. How did you decide to try to donate a kidney to a first responder?

FEAL: Well, you know, I had no intention of donating my kidney. There was a man named Paul who went to my website and emailed me. And he's like, can you put my story on your website? I said no. If I did that for you, I'd have to do it for everybody, and then it really drowns out or muddles down my mission statement. But what I will do is if I'm a match, I'll give you my kidney. He replied back with some curse words. How can you be so cold and callous? I said, no, dude, you can have my kidney.

So after a couple of days of talking on the phone and exchanging emails, we made an appointment for - at Columbia Presbyterian. We took a test. A couple of weeks later, I was compatible, but I wasn't a hundred percent match. I was ready to donate a kidney. He was not ready to receive. A few months went by, and the hospital's like, John, if you give your kidney to somebody else, we'll ensure Paul gets a better one. I said, OK, great. I get to help two people.

Paul didn't want anybody else's kidney but mine, so the hospital made me talk to him. I said, Paul, my kidney's not going to make you walk on water, you know? Go and get that better kidney because if you reject mine, I'm going to be mad at myself for my kidney not working. A couple of months go by, and the hospital's like, well, John Hopkins has done it a couple of times. We'd like to do it here. We want to do a six-person swap.

So I was like, so I get to help three people, you know, because in essence, without me, those other three people don't get a kidney. So they're like, yeah. I said, well, sign me up because this is really cool. And you know, I never won lotto. I'll never be filthy rich. But given the gift of life to one person directly and the other two indirectly, there's not a better feeling in the world knowing that person wakes up every morning with a part of me in them.

GROSS: So the way the swap worked - like, you donated your kidney in return for three people...

FEAL: Yeah.

GROSS: ...Being moved up to the top of the list to get kidneys? Is that the way it works?

FEAL: Yeah. So they took three recipients and three donors, six hospital rooms all simultaneously in a row. And they removed three and inserted three. And it was about a month later where I got to meet everybody, yeah.

GROSS: So did everybody survive?

FEAL: Yeah. Well, Paul actually died last year of a stroke. But he made it nine - eight, nine years.

GROSS: That's a long time.

FEAL: So last week was my 10-year anniversary of that.

GROSS: What'd you do to commemorate the anniversary of giving up a kidney?

FEAL: You know, I Facebook timed with Tracy from Connecticut. You know, the young woman who...

GROSS: She's the person who has your kidney.

FEAL: Yes. And you know, to be part of that and to know that my kidney's in her, again, I think those who have donated a kidney that are listening to this know that feeling of euphoria or whatever you call it. It's just a special feeling.

GROSS: Well, let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is John Feal, who was a first responder after 9/11. His foot was crushed by a falling 8,000 piece - 8,000-pound piece of steel.

After many surgeries, he became an activist, lobbying Congress for medical funding and compensation for first responders. And he continues that effort because every time there's a bill passed, it expires, or it's, in his opinion, not enough. So he continues his activism. We'll be right back after a break. This is FRESH AIR.

(SOUNDBITE OF AVISHAI COHEN SONG "GBEDE TEMIN")

GROSS: This is FRESH AIR. And if you're just joining us, my guest is John Feal, who was a first responder after 9/11. Then he became an activist, lobbying Congress for health benefits and other compensation for 9/11 responders. He also started a foundation to assist first responders and to educate our elected officials about the concerns and needs of first responders, and that's called the FealGood Foundation.

So one of the things you've done was to create a wall with the names of first responders, who have subsequently died, to memorialize them. What gave you the idea for the wall? And where is it?

FEAL: Well, thank you for bringing that up because that park, where that wall is, is my baby. It's on Long Island, in Nesconset. And about a decade ago, I was approached by local town officials to build a 9/11 memorial after an intersection had reconstructed. And there was an open, empty one acre of land. And they said, would you like to get involved?

And when I went to this meeting, everybody's like, yeah, let's do this. I said, you know, rightfully so, there's 9/11 memorials all over the country. And you'll never hear me complain about that. But there's no 9/11 memorial for those who continue to die from 9/11. And everybody looked at me like I was crazy. But I said, if you want me to get involved, that's what I wish. And I got my way.

And now on one acre of land, the 9/11 Responders Remembered Park has a 60-foot granite wall. It's got about 800 names on there. On September 16, five days from now, we're going to add 164 names. And it's got a 17-foot-high clock. It's got a gazebo. It's got statues. It's got a piece of steel in there. It's got a time capsule to be opened in, like, 2038 or something.

But it's my baby. I live three minutes from there. I take my dog there twice a day. We pick up the garbage if there's garbage. But it respects, and honors and remembers those who died that day and those who continue to die.

GROSS: So how many funerals for first responders have you gone to?

FEAL: A hundred and seventy-one, and I paid for about eight or nine of them.

GROSS: So you - it sounds like you definitely keep count of how many you've been to.

FEAL: Yeah, well, I have those mass cards on top of...

GROSS: Oh, sure.

FEAL: I save those, and they're on top of my desk. And it's my motivation. And it makes sure that - it enables me to continue to do the work I do and makes sure that I don't complain about the petty stuff. You know, I seen - you know, Greg Quibell passed away from AML leukemia, and I was in the hospital room when he passed away, with his family.

And Greg held my hand. And I was like, wow, that's weird. He could be holding his wife's hand or his kids' hands. And his last words were, John, make sure my family's taken care of. And he passed away. I had a dying man hold my hand when he died. That's a lot of pressure. That's a lot at stake.

GROSS: So having been to 171 funerals - and I'm sure you will be to more, sadly - how has that affected your thoughts about death and what death is, and whether you're afraid of it or not?

FEAL: Great question. Great question. I think when we die, we die. I think we're energy. I think we go into the ground, and we just keep the food chain going. And I'm not so much into all of that biblical, religious stuff, but I do believe there's a God. I believe we're here for a purpose. And I believe, when we leave, there's also a purpose. And I think our energy goes to other people, and our energy continues.

I'm not afraid of dying, no. Sometimes, I - hey, listen, just because I went to therapy when I wanted to kill myself after the getting out of the hospital, those thoughts creep up. I do have my bad days. Would I do it? No. Am I strong enough to stop myself? Yes. But I am not afraid to die. And there are times when I wish I would have died instead of a friend or somebody who left behind four kids. And I begged God - my God - to take me instead of them.

GROSS: When you say that you wanted to kill yourself after you got out of the hospital, did you come close to actually doing it?

FEAL: The fact that I was - it was consuming my daily thought process - yeah, I was close. Did I put a gun to my mouth? No. Did I put a razor blade to my wrist? No. Did I swallow a hundred pills? No. Did I have access to all three? Yes. I'm still here.

And you know, I spent 11 weeks in the hospital, laying on my back. Physically, I deteriorated. Mentally, I deteriorated. And I don't judge anybody if that's what they would've went through. I know people that kill themselves for less. But...

GROSS: So what stopped you?

FEAL: My mother. Now, my mother passed away in 2006. My mother was my father, my mother, my best friend. She was my everything. And that's not saying I was a mama's boy. But my mother is smarter now, dead, than when she was alive because everything she ever told me has come true. But my mother raised me a certain way, and it's not to be better than anybody, but to be different and to...

GROSS: So what - when she was there for you during that really dark period, what did she do that helped you through it?

FEAL: Well, she had cancer. And she wanted to live, and she was fighting. And I was feeling sorry for myself. And you know, my mother never complained. My mother never once complained. And you know, she smoked her whole life. I don't smoke. And she was OK.

And she just wanted her kids to be happy and make sure that everybody's OK. And I saw her suffer for 2 1/2 years and never once say, John, why me? Or oh, John, this hurts, I can't take this. And you know, if my mother can live like that, then I can.

GROSS: Do you ever think back about the moment of impact when the steel beam crushed your foot? And I know I've asked you to tell us the story. I'm sure I'm one of many journalists who have asked you to tell that story, one of many other people who have asked you to tell that story. But when you're alone, does your mind go back to that moment, or do you try to protect yourself from reliving it?

FEAL: No. I'm doing it as we speak. I can block out my injury. I can block out my five days there. I can't block out the smell - probably why I don't sleep enough. When I close my eyes, I could smell ground zero. And everybody always asks, what would it have smelled like?

And I - it's just - there's not a word invented yet that describes the smell of ground zero. But going back to the impact of that steel beam hitting my foot, it's vivid. And it - I could feel it when it hits me. But if that never happened, where would I be today?

GROSS: Where do you think you would be?

FEAL: Would they have got - well, I'd probably still be working. I'd probably have two feet. I probably wouldn't have had so many surgeries. And who knows what I'd be doing. But would the Zadroga bill got passed? Maybe. Would all those other bills have gotten passed? Maybe. Would that person have gotten a kidney? Maybe. I think everything happens for a reason. And would I like to have my other half of my foot back? Absolutely.

GROSS: Why do you think it's the smell that haunts you most about the pit after 9/11?

FEAL: Because it's a smell that I've never smelt before or after. It's a smell of the - it was the smell of destruction, devastation, carnage. It was everything combined in one that just created the smell. And this not just me saying this, this is other 9/11 responders, and first responders and volunteers who will say the same thing.

Especially this time of the year, when I shut my eyes, that smell comes back. And it's like it's putting its hand over my mouth and nose. And it gets tough. It gets tough. And you know, I'm opening it up now and telling you this because you never see me post this on Facebook or say it like this because I'm always giving that motivational pep talk and telling people, you know, chin up, chest out, drive on. You know, be the same person you were on 9/11. You're a hero.

But, you know, we're all human. We all have our flaws. And I am - I'm flawed. I am - I'm flawed. And I believe every person who ever existed is flawed. And some of us just don't open up and talk about it, you know? You know, when somebody comes to me for help through the FealGood Foundation, depending on what they need, there's a good chance I went through what they're already going through.

And it's easy to associate with them and connect with them because I know what it is to suffer, not only physically, and mentally and financially. But I have suffered. And it's not a good feeling. The feeling is, is when you're down and there's one knee on the ground, are you going to get back up? And that's where you measure yourself.

GROSS: My guest is John Feal, a 9/11 first responder who was injured at ground zero and became an advocate for first responders. This is FRESH AIR.

(SOUNDBITE OF LONDON SINFONIETTA PERFORMANCE OF HENRYK GORECKI'S "SYMPHONY NO. 3: II. LENTO E LARGO - TRANQUILLISSIMO")

GROSS: This is FRESH AIR. My guest is John Feal, a first responder at ground zero who was seriously injured at the site and became an activist working for medical coverage for first responders who were injured or sickened by toxins at ground zero.

So one more question for you - has working with 9/11 responders, many of whom have died since you first met them, advocating on their behalf changed the nature of friendship for you? My impression of you as a loner is that maybe you weren't the most, you know, like, emotionally communicative guy in the world.

FEAL: Yeah.

GROSS: But I suspect that you became more emotionally accessible and communicative since doing this work.

FEAL: You're psychoanalyzing me, and you're spot on. You know, I grew up in a household where my father was abusive, an alcoholic. I was the youngest of five. I was shielded and protected by my mother. But it wasn't OK to cry in my house. I had to be tough, you know? From the age of 5 until my early 20s, I was doing judo and wrestling. But I had to be tough, and I didn't know what it was to not be tough.

But now my small circle of friends - and it's small. And they are 9/11 responders, but they're mixed in with my childhood friends. They get to see that sensitive, softer side of me. They get to see me cry. They get to see me be jovial. You know, the way I'm talking to you now is the way I acted and reacted when we got the bill passed twice in Congress. It takes a lot to get me to come out of character.

The only time I really ever come out of character - if somebody has the ability to help somebody and doesn't do it for a reason that doesn't measure up to my standards, that's when I tend to come out of character. I just don't understand how human beings can be so cold and callous and hurt each other. It just - it will never register with me.

GROSS: Well, thank you for mentioning that you had, you know, an abusive father. It helps me understand how difficult it must have been for you to feel vulnerable after a profound injury like the one that you had.

FEAL: Well, yeah, you know, because after I got hurt and even in therapy, you know, while I didn't really ever get along with my father at the age of 16, I was 34 when I got hurt. And I still felt like I let my father down in so many ways. And you know, my father was a lot of things, and I'm not proud of or happy about him. But he was a hard worker, and he instilled hard work in me. And I feel like I let my father down. That was part of me going to therapy. And I was in the hospital for 11 weeks. And while I was medicated, they said my father was there once, and I don't remember.

GROSS: Is he alive now?

FEAL: And my - no, he passed away a couple years ago. And you know, I never got to say, Dad, I wanted to punch you in the face for what you did to your - to my mother and your kids. But I forgive you, and I hope you're OK with your life. And you know, I never got to say those things. But I got to say everything I had to say to my mother, and that means more to me. But you know, you can have a hundred fathers. You only can have one mother. And I miss her dearly. You know, I go through my life every day missing somebody. And I think we all do. I'm no different than anybody else. But we're human beings, and we're programmed to move forward. But moving forward, I want to live my life honoring them and trying to be a better person tomorrow for them.

You know, walking over here this morning, I saw a homeless person out your, down the street, maybe four or five buildings down, and I gave her a $5 bill. It's probably not the right thing to do 'cause I'm enabling them, but people are suffering. And I think everybody's got so much on their plate. If everybody just stopped and looked around and said, how can I make this country better, how can I make this world better, I think you'd see a big difference. But nobody wants to stop.

You know the old saying - and it's usually passed on through generational advice from an older person - say, you only live once. I don't buy that. You only die once. You live every day, and I'm going to live my life like that...

GROSS: Oh, that's good. That's good.

FEAL: ...You know? But I want to live my life every day, and I want to live my life knowing that when I go to bed, I made a - you know, every morning when I go to 7-Eleven with my dog who has to go for a ride and has to go to 7-Eleven, whoever's in back of me on line, I buy their coffee for them, and they're all in shock. Why are you doing that - 'cause you're going to do something good for somebody during the course of the day. It's contagious. It's contagious.

GROSS: That's really nice. Well, John Feal, thank you so much for talking with us today, for helping us remember 9/11. And thank you so much for the work that you did after 9/11 and the work you've subsequently done helping first responders. Thank you so much.

FEAL: Thank you for having me. And on a day like this, I hope we all find comfort in knowing that as a nation, we can mourn together and move forward and help those who still need help.

GROSS: John Feal was a 9/11 first responder and is the founder of the FealGood Foundation whose mission is to assist emergency personnel.

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GROSS: Tomorrow on FRESH AIR...

(SOUNDBITE OF ARCHIVED RECORDING)

PRESIDENT DONALD TRUMP: There's something happening. They're not reporting it. Katy, you're not reporting it, Katy.

GROSS: My guest will be Katy Tur, who covered the Trump campaign for NBC and MSNBC and was called out by Trump several times at rallies, which led to jeers and threats. She's written a new memoir. I hope you'll join us.

FRESH AIR's executive producer is Danny Miller. Our technical director and engineer is Audrey Bentham. Our associate producer for online media is Molly Seavy-Nesper. Roberta Shorrock directs the show. I'm Terry Gross.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.