When Greg O’Brien asks “are you a New England Patriots fan,” he does so with a twinkle in his eye that says there’s only one right answer a good Cape Codder can give.
“Good,” he says with a nod and smile, quickly moving to the point he’s making: “Then you know what coach Bill Belichick says: ‘Do your job.’ That’s what I’m doing. I’m just doing my job.”
O’Brien, a skilled journalist and extraordinarily affable person, quickly puts people at ease with ice breaking jokes or heartfelt inquiries about family or common acquaintances. The “job” to which he refers, and the focus of his work for more than a decade now, has been reporting on Alzheimer’s Disease.
O’Brien’s mother died from the disease, as did his maternal grandfather, and paternal uncle. Diagnosed with early-onset Alzheimer’s in 2009, O’Brien attacked the topic using all of his journalistic skill and creative writing talent, and has since written extensively, been filmed, written films, and lectured around the world about his personal experiences with the disease. In 2014, O’Brien published the book On Pluto: Inside the Mind of Alzheimer’s. The book, O’Brien has repeatedly said over the years, is a guide for living with Alzheimer’s, not dying from it. With everything he does, O’Brien brings an approachability and compassionate voice to an issue many simply don’t want to face.
“I’m no hero,” O’Brien says. “I don’t deserve anything other than the realization that I’m doing my job
as a journalist.”
Confronting the disease—walking through the bewildering place in his mind that he calls Pluto—terrifies him, but he admits that fear gives him the empathy necessary to reach out to others and help them contemplate the layered realities of living with the disease.
Alzheimer’s is the sixth leading cause of death in America (seventh since COVID appeared). While the incidences of death from many other leading killers, such as cancer and heart disease, are decreasing, Alzheimer’s numbers are on the rise. According to the advocacy group Us Against Alzheimer’s more than 6 million people with Alzheimer’s Disease live in the United States today. It is estimated, at current rates, nearly 13 million U.S. residents 65 or older will have the disease by 2050. The cost to the nation at that point will top $1 trillion per year. Despite the number of families dealing with the disease, talking about Alzheimer’s is still taboo for many. And, telling the story through numbers and data, as alarming as they are, doesn’t touch the heart, doesn’t evoke the response needed to generate what O’Brien calls a “critical mass” of care large enough to tip the scales to accelerate progress for a cure.
“It’s the brain,” O’Brien says with a shake of his head, noting so much about the brain is still a mystery. “What we don’t understand is scary. But we have got to talk about this. We have to.”
Have You Heard About Greg?
In the movie Have You Heard About Greg? Lisa Genova, neuroscientist, author and close friend of O’Brien’s, says “[Greg] is making it possible to look at this disease long enough to do something about it, otherwise people just look away.” The movie was released this past December and recently became available for online streaming.
O’Brien is proud and excited about the film, which he wrote. It was directed by his childhood friend Steve Ecclesine. Growing up, Ecclesine and O’Brien went to school together in Rye, New York. The boys’ mothers were good friends, “den mothers together,” O’Brien recalls. Both women lived and died with Alzheimers.
The documentary features conversations between O’Brien and Ecclesine, discussions with researchers and advocates, heartfelt, honest interviews with his children, Brendan, Colleen and Conor, and wife Mary Catherine, and other people who have been touched by the disease. In soul-searching talks with Doug Scalise, pastor of the Brewster Baptist Church, O’Brien chronicles his fear and the harsh experiences of his life at times, but also his hope and faith, his victories, and his belief and fervent hope that what he’s doing will help others.
“I’m not trying to proselytize here, but I couldn’t do this without my faith in God, my belief in God’s presence in this journey for all of us,” O’Brien says. Through his faith, he’s come to understand that sometimes “maybe the mind isn’t all it was, but if that’s the case, then go to the heart, the home of the soul, tell what’s in your heart. The soul survives forever.
“I see myself as just a regular guy, a stupid Irishman, whose mother taught him about that: finding the place of the soul and to speak from there.”
While he no longer has the ability to organize his thoughts the way he did when he was drafting On Pluto, O’Brien says even then the multiple demands of writing were a struggle and he admits he surprised himself with his own words.
“I’d look at something I’d written and think, ‘Where did that come from?’” he says. “Then I’d realize—it came from my soul. That’s where Steve [Eccelsine] and I connect on this—he speaks from the heart and soul too.”
The Forgetting – Inside the Mind of Alzheimer’s – a Podcast
Another conversation of the heart for O’Brien has been working with author David Shenk and producer Sean Corcoran to create the podcast The Forgetting: Inside the Mind of Alzheimer’s. Shenk and O’Brien co-host the program; Corcoran, a journalist and former senior managing editor for WGBH and WCAI news, produces it.
The reach of the podcast, which takes its name from Shenk’s book of the same title, is growing, touching listeners around the world. “Anyone who gets to know Greg falls in love with him as a person,” Shenk says. “He’s involved in all these different ways trying to educate the public about this disease.”
The podcast has hosted a number of celebrities whose lives have been touched by the disease: Lisa Genova, Mandy Moore—whose character on the television program This is Us was developed using On Pluto—and actress Lauren Miller Rogen, whose mother suffers from the disease. O’Brien says he’s thrilled to have had the opportunity to work with people like Glen Campbell’s wife, and Maria Shriver.
“I guess, in a weird way, you can say the disease has been a blessing that I’ve gotten to meet all of these amazing people, people who are working to help this cause,” O’Brien says. “They’ve made me a better person.”
“It’s amazing to see Greg in action in those moments,” Corcoran says. “He’s a natural. His curiosity shines and you see his journalism chops. He’s the subject of the podcast, but he’s the co-host too. It’s remarkable to see. And so, we’re moving through this with love for as far as we can go.”
A genuine camaraderie between Shenk and O’Brien cradles all of their conversations, which range from political—Where’s the government in all of this? To spiritual—guardian angels. To deeply personal—the feelings of naked vulnerability that come with this disease. In one episode, Shenk says, “You’re sharing these dark stories and I sound like I’m having the time of my life, because you’re trying to make me laugh.”
With an audible broad smile in his voice, O’Brien agrees, “Yes, I am.”
The idea for the podcast, according to Shenk, started as a conversation about how oftentimes people in the public eye disappear with a diagnosis of Alzheimer’s Disease. “We were thinking, wouldn’t it be interesting to do exactly the opposite, if we committed to stay public, see it all the way through, or at least as far as we can go,” Shenk recalls the discussion, and how quickly O’Brien embraced the concept. Shenk approached Corcoran, who knew O’Brien through working at WGBH and WCAI.
With three seasons, close to 30 episodes recorded, and another season in the making, The Forgetting has existed longer and gone farther than any of its creators hoped it would or thought it could. “I don’t think we thought we’d have years and years of doing this,” Shenk says. “We didn’t think the course of his disease would allow us to do what we’ve been allowed to do. It is getting worse as it inevitably will, but we’re talking another season, and we’re all grateful for that.”
Since the first season, Corcoran says he’s seen a “massive change” in how comfortable Greg is preparing and recording. “He’s been really remarkable as we’ve moved through this,” Corcoran says. “But he suffers. You can see that.” Shenk nods, agreeing.
“There’s a paradox with Greg,” Shenk says. “He’s a brilliant writer, a brilliant storyteller. He’s not taking a back seat in any of this. He’s a really hard worker. For many years he’s put on such an impressive face. But that’s meant a lot of note taking, a lot of writing, a lot of prep.”
Greg’s professionalism and preparation create the paradox, Shenk explains, “Sometimes we want to see [O’Brien] in the moment without the preparation, because that’s where much of the power in the show lies.
“So, I try to ask him questions that reveal the Greg without the notes, without the crutches,” Shenk says. “I want us to hear the difficulty as it’s happening. He’s been so brave on so many levels. He’s answered the call to be out there, naked. It can be a little humiliating, but that’s part of the ongoing tension. It’s what we wanted to do.”
In the episode “Isolating from Friends,” aired on April 14, 2022, O’Brien agreed to do the podcast without notes, and talked at length about why he prepares the way he does. He explained that notes give him confidence, but more important, keep listeners from feeling pity.
“If people pity me, they’re not listening to my message,” he says.
In the same episode, referring to the notion of cognitive reserve as an “extra fuel tank,” O’Brien says he’s put a lot of friends and extended family members on notice that they won’t be hearing from him as much. “My fuel tank is starting to run out,” he says. “I’m using what’s left of that reserve to talk about the message, because that’s what I need to do and there’s not much juice left.”
His message is that people with Alzheimer’s Disease can live for 20 to 25 years with the disease, that they are living not dying, and that, as a nation, we need to start talking more openly about what it means for all of us.
All three men agree they’re eager to start recording the newest season of the podcast. “We’re deeply concerned about Greg,” Corcoran says. “But we all believe in the mission of this—all three of us.” Shenk nods, as he listens to Corcoran, adding “We’re all curious about how this weird, ambitious project goes, how long it will go, and what the end will be like.
“I’m afraid of what the end will be like, but also excited to push through,” he says. “The spirit that we started with is still very much with us and we’re going to tell this fascinating story for as long as we can. I’m not afraid to be in an uncomfortable place. We’re going to test that proposition thoughtfully, and tastefully, with all of us hoping it will be of some service to people.”
Saying he’s not sure if “blessing” is the right or wrong word, O’Brien is committed to continuing to help with the creation of The Forgetting. But his writing and work takes “forty times longer than it used to. It’s a lot harder. But I do it, because when I get up in the morning, I hear a voice—call it the universe, call it God—saying, ‘We’re not done yet,’” O’Brien says. “So I keep trying.”
You can find The Forgetting: Inside the Mind of Alzheimer’s podcast wherever you get your podcasts. Or find it under health and fitness podcasts on NPR.
Susanna Graham-Pye is a contributing writer for Cape Cod Life Publications.
Editor’s note: Just days before sending this issue to press, Greg and Mary-Catherine’s son, Conor who suffered from a seizure disorder, succumbed to a life-ending seizure. Greg says he is sure Conor will enjoy this story in heaven.