After his Alzheimer’s diagnosis at 59, veteran investigative journalist Greg O’Brien, now 72, sprang into a new phase of action. He wrote a brilliant book, On Pluto: Inside the Mind of Alzheimer’s; joined the board of UsAgainstAlzheimer’s; and cohosted a podcast on the disease while also writing scripts for PBS’s Nova.
Now O’Brien tells his story in Steve Ecclesine’s new documentary, Have You Heard About Greg?, which also features neurologist Lisa Genova, whose book Still Alice became an Oscar-winning film.
O’Brien talks with AARP about his experience as a writer grappling with the illness that is expected to strike 14 million people.
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How did your brain troubles begin?
My sweatshirt over the handlebars of my bike caught the spokes and threw me, and I had no helmet. Years later, my jeep flipped. And in school I played baseball and football and got numerous head injuries, which if you’re predisposed to dementia can accelerate it. I carry the APOE e4 gene. I lost my grandfather, mother and uncle to Alzheimer’s, and my dad was diagnosed with dementia. We need to pay attention to head injuries.
What are your memories about journalism?
I’m a career journalist — Boston Herald, AP, Cape Cod Times, Washington Post, Time. At the Arizona Republic, I told [future Supreme Court Justice] Sandra Day O’Connor, “I’m a cub reporter. This is my first assignment. Can you tell me what happened in court?” She said, “Let’s talk periodically, and I can give you tips.” So we became good friends. The irony was that we were on parallel tracks. Sandra lost her husband to Alzheimer’s, and then she had symptoms of dementia. She always said, “Greg, keep asking questions until you get the answers.” At 72, I keep asking questions.
Do you think your long practice in telling and shaping stories helped your brain resist what might have been a worse course of Alzheimer’s?
Yes. Doctors said I’ve been blessed with what they call cognitive reserve, which is like an extra fuel tank of IQ that helps you maneuver. It’s partly a result of journalism — exercising your mind. The disease takes 20 to 25 years to run its course. Millions are afraid to talk about the symptoms, afraid of the taboo. Part of my journey has been to demystify Alzheimer’s, to tell people that there’s help out there that can help maneuver one through this. And as the great Bugs Bunny once said, “Don’t take life too seriously, because nobody gets out alive.” It’s been a tough journey, but I try to give people hope and faith while the researchers race for a cure.
You make sense, but your memory is unreliable, right?
Sixty percent of my short-term memory can be gone in 60 seconds. Sometimes I don’t recognize people I’ve known all my life. It’s like someone has taken all the documents in my mind’s file cabinets and strewn them all over the floor. So before I get out of bed, I’ve got to figure out what’s up and put the files back in my head. There were times I reached for my toothbrush and my brain told me my toothbrush was my razor. Shortly before I got it to my mouth, I realized what the hell was going on.
Does it help that you live in a close community in Cape Cod?
I really hate clichés, but it takes a village and Cape Cod is that kind of village. I’d love to see more dementia-friendly communities, so people stop feeling the taboo about the disease. Everyone wants to talk about cancer. Nobody wants to talk about Alzheimer’s.
You have a gift for metaphor, such as when you compared the isolation of Alzheimer’s to being exiled from time to time on Pluto, far from our world. When you’re having confusion, does reaching for a metaphor help you organize your thinking a bit?
Yes. It’s about strategies. As journalists, you learn strategies. After my diagnosis, I wrote 1,000 or 2,000 pages of things I was afraid I’d forget, anecdotes, research. I wrote On Pluto with encouragement from several friends, including Lisa Genova. When I can’t think of a word, I play charades with my MacBook Pro: “Sounds like …” I write in lists of clues, Google stuff, and then you click it closer and closer. It can take me 20 minutes to find what I’m trying to figure out. I do this with the help of God. I always tell people I’ve committed every sin but murder and adultery, so I’m no altar boy — even though as a kid I was an altar boy. ... I just lost my train of thought. What was I saying?
The importance of God.
Yeah. My writing has come from my soul. I look at my laptop, say, “Wow, where did that come from?” I help people live, and leave the planet with some grace, with some faith. One of my best friends, a writer in New York, said, “You know, your writing in this journey with Alzheimer’s has gotten better, more lyrical. And also, you’re less of an ass----, Greg.” Which I think is wonderful.
I could not write On Pluto today. My writing takes exponentially longer. It’s still as good. But it’s taking ten times longer now.
Why did you make the film Have You Heard About Greg?
If there’s one thing I can do in the rest of my life, it’s to give people faith, hope, and humor, and demystify the damn stereotypes of this disease.
What don’t people understand about it?
I can use my cognitive reserve to write, but I’m not good in conversations. The brain can’t separate one conversation from the other; they all stream together. All the noises are like a shrieking in the brain. It’s like the noise in Psycho before someone’s about to be stabbed.
My nickname in the old days was Senator from Cape Cod, because I could work a room. I can’t do that now. I’ll selectively shake hands; I won’t know who the hell I’m talking to. Everyone says, “Oh, I saw Greg, he shook my hand. He looks great.” They have no clue I was sitting outside, sometimes in tears, sometimes on the planet Pluto.
But even if you lose track, is it good to talk to people, perhaps one-on-one — to feel connected?
I’ll just say, “Look, I can’t remember what I just said. Can you help me?” They go, “Sure.” As opposed to just trying to pretend that everything’s fine. I’m trying to encourage others to stand up and fight it and deal with it. There are a lot of bright, genius people in the throes of this 20- to 25-year journey.
Is living worthwhile, even if you have Alzheimer’s?
Yes, for a number of reasons. It allows you to look back on your life and fix some things that need to be fixed while you can. As opposed to someone who gets taken out in a car crash. And, if one understands the disease, which many people don’t, they could understand some of the strategies in getting through the day.
Tim Appelo covers entertainment and is the film and TV critic for AARP. Previously, he was the entertainment editor at Amazon, video critic at Entertainment Weekly, and a critic and writer for The Hollywood Reporter, People, MTV, The Village Voice and LA Weekly.