Barry Nolan started his broadcasting career in the 1970s. He co-hosted the program Evening Magazine with Here & Now鈥榮 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 and a monitoring program, the
That monitoring program now has one more data point: Nolan himself. He鈥檚 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: 鈥淵eah, it鈥檚 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.
鈥淲e were late to catch it. It didn鈥檛 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, 鈥業鈥檓 sorry, I鈥檓 coughing in your ear like that. I鈥檝e just recently been diagnosed with interstitial lung disease,鈥� and she said, 鈥榊ou should call the 9/11 Fund right now!鈥� And it turned out that something like going on 60 reporters that covered the 9/11 story have had lung disease.鈥�
Garland Waller: 鈥淲hen 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, 鈥楧ad, are you wearing a mask?鈥欌��
But nobody wore masks. It makes you wonder, emergency room doctors, ambulance drivers, where are they now?
Nolan: 鈥淥h, 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.鈥�
And of course you would speak of them. And there鈥檚 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: 鈥淥h, God, yeah. The Hoyts, it鈥檚 just, you know, this child that had such severe birth defects. The experts told him, 鈥榊ou should just put him in an institution and carry on with your lives.鈥�
鈥淭here is just no 鈥榪uit鈥� 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鈥檚 absolute miracles.鈥�
You made things like that happen.
Nolan: 鈥淲ell, 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.鈥�
I think we need to say here that interstitial lung disease is an insidious disease. There鈥檚 no cure. It鈥檚 progressive. You and Garland recently sent out a note to all of the many people who adore you. You鈥檝e decided to accept the inevitable. You鈥檝e, I鈥檓 sure, buoyed yourself even for this conversation and will be exhausted after.
Nolan: 鈥淥h, yeah. I鈥檓 at the stage where I鈥檓 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鈥檓 hoping, I鈥檝e 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.
鈥淏ut the way our health care system works these days, my insurance company wouldn鈥檛 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.
鈥淭here鈥檚 something wrong with the system. And I hope one day people will have the heart and soul to fix it.鈥�
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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鈥檚 still applying to the 9/11 Victim Compensation Fund. It has been difficult because they won鈥檛 accept his television broadcast as proof of working at Ground Zero. It鈥檚 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 Casta帽eda saved infants through a congenital heart surgery he developed. Nolan was privileged to witness one:
鈥淪taring 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.
鈥淎nd four hours later, this doctor walks into the waiting room where these parents are. And they鈥檙e looking up, you know, with prayers in their eyes. And he looks at them and then he just claps his hands and says, 鈥榃ell, we have some good news.鈥�
鈥淭hese parents just exploded with joy. And boy, the one thing I鈥檇 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.鈥�
This interview was edited for clarity.
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