Barry Nolan started his broadcasting career in the 1970s. He co-hosted the program Evening Magazine with Here & Now‘s Robin Young, introducing the world to people like Dick Hoyt, the marathoner who pushed his son, Rick Hoyt, who was born with disabilities, through the entire 26.2-mile Boston course in 1981.
More recently, Nolan was a panelist on the public radio show Says You!
But in 2001, he was a national reporter based in New York and spent several days at Ground Zero right after the Sept. 11 attacks. He slept on the ground and sifted through the dust to show his viewers the complete destruction he was seeing.
He befriended firefighters and other first responders, and later, advocated for benefits and compensation for the many illnesses they began to suffer, including the World Trade Center cough, severe lung diseases, cancers, post-traumatic stress disorder and death.
Eventually Nolan quit broadcasting and joined the office of then-Rep. Carolyn Maloney (D-N.Y.) to continue to fight for federal legislation. Those efforts joined others and led to the 9/11 Victim Compensation Fund and a monitoring program, the World Trade Center Health Program
That monitoring program now has one more data point: Nolan himself. He’s been diagnosed with idiopathic pulmonary fibrosis, an interstitial lung disease with a median survival time of two to five years after symptoms arrive. Nolan first saw symptoms seven years ago but did not know the cause at first.
Nolan and his wife Garland Waller spoke with Robin.
5 questions with Barry Nolan and Garland Waller
You were diagnosed with interstitial lung disease two years ago. Can you talk about that?
Barry Nolan: “Yeah, it’s a disease that most people really get the hard way. They work in stonecutter facilities, in mines doing something that creates fine dust, that gets in their lungs, and it causes scarring.
“We were late to catch it. It didn’t really connect with me until I was on the phone with former Congresswoman Carolyn Maloney. And then I just kept coughing in her ear. I said, ‘I’m sorry, I’m coughing in your ear like that. I’ve just recently been diagnosed with interstitial lung disease,’ and she said, ‘You should call the 9/11 Fund right now!’ And it turned out that something like going on 60 reporters that covered the 9/11 story have had lung disease.”
Garland Waller: “When I first started dating Barry, he told me how his son Alex called him up. I think it might have even been on 9/11 and said, ‘Dad, are you wearing a mask?’”
But nobody wore masks. It makes you wonder, emergency room doctors, ambulance drivers, where are they now?
Nolan: “Oh, so many people that were involved in the cleanup. Looking northward up the West Side Highway, as far as I could see, cars and trucks and semis, people that just showed up, they just on faith, stood in line, hoping for the chance to help. People recognize the nobility of those people.”
And of course you would speak of them. And there’s this sense that you joined their ranks in this illness. But does knowing them sustain you in the same way, say, the Hoyts do?
Nolan: “Oh, God, yeah. The Hoyts, it’s just, you know, this child that had such severe birth defects. The experts told him, ‘You should just put him in an institution and carry on with your lives.’
“There is just no ‘quit’ in this family. Just out of the blue I called up Apple, and I told them about the Hoyts, and they called back the next day, and they had a computer for him. It unlocked his brilliance. Ricky used that to get into high school and to get into college and to graduate from college with a degree in counseling, which I find to be one of life’s absolute miracles.”
You made things like that happen.
Nolan: “Well, I would like to give the credit for those things to people who have goodness that is just waiting for just the little right poke with a finger to let it go to release it.”
I think we need to say here that interstitial lung disease is an insidious disease. There’s no cure. It’s progressive. You and Garland recently sent out a note to all of the many people who adore you. You’ve decided to accept the inevitable. You’ve, I’m sure, buoyed yourself even for this conversation and will be exhausted after.
Nolan: “Oh, yeah. I’m at the stage where I’m getting up and going to take a shower and brushing my teeth leaves me panting for breath. The doctors are doing their best, and I’m hoping, I’ve applied now for the World Trade Center Health Program, and if you get that, you may get access to what is the number one drug for ILD these days called Jascayd.
“But the way our health care system works these days, my insurance company wouldn’t let me try. The drug, that is for a very rare disease that has no cure, that is progressive and is 100% fatal, costs $16,000 a month.
“There’s something wrong with the system. And I hope one day people will have the heart and soul to fix it.”
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This portion of the interview with Nolan was from a week or so ago. Since then, his insurance company has decided to allow him to have that drug Jascayd, buying him a little more time. He’s still applying to the 9/11 Victim Compensation Fund. It has been difficult because they won’t accept his television broadcast as proof of working at Ground Zero. It’s too easy to fake, they say.
Meanwhile, in that first conversation, Nolan spoke of so many other stories sustaining him. We leave you with one. The late Dr. Aldo Castañeda saved infants through a congenital heart surgery he developed. Nolan was privileged to witness one:
“Staring down into the open chest of a 3-month-old baby. And this doctor reaches down and lifts the heart up. The beating heart of a 3-month-old in his hands. He went and talked to the parents before the operation, and the nurse came and reached for the baby. And when the parents lifted it up to the doctor, just, you know, with their hearts in their throat.
“And four hours later, this doctor walks into the waiting room where these parents are. And they’re looking up, you know, with prayers in their eyes. And he looks at them and then he just claps his hands and says, ‘Well, we have some good news.’
“These parents just exploded with joy. And boy, the one thing I’d tell you, is that if you learn to do these good deeds, and you do them, the return that you get is something few of us ever experience. And we are the poorer for it.”
This interview was edited for clarity.
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Karyn Miller-Medzon produced and edited this interview with Todd Mundt. Robin Young produced it for the web with Michael Scotto.
This article was originally published on WBUR.org.
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