A journalist with Alzheimer’s disease shares his film journey

Falling Forward Films / Courtesy Everett Collection

Do you think your long practice of telling and shaping stories helped your brain resist what could have been a worse course of Alzheimer’s disease?

Yes. The doctors said I was blessed with what they call cognitive reserve, which is like an extra fuel tank of IQ that helps you maneuver. It’s partly the 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 disease, to tell people that there is help out there that can get them through it. And as the great Bugs Bunny once said, “Don’t take life too seriously, because no one makes it out alive.” It’s been a tough journey, but I’m trying to give people hope and confidence as researchers fight to find a cure.

You have sense, but your memory is unreliable, right?

Sixty percent of my short term memory can disappear in 60 seconds. Sometimes I don’t recognize people I’ve known all my life. It’s as if someone took all the documents in the filing cabinets of my mind and scattered them on the floor. So before I get out of bed, I have to figure out what’s going on and put the files back in my head. There were times when I picked up my toothbrush and my brain told me that my toothbrush was my razor. Shortly before putting it in my mouth, I realized what was happening.

Does it help that you live in a nearby community on Cape Cod?

I really hate clichés, but it takes a village and Cape Cod is that kind of village. I would like to see more dementia-friendly communities, so that people stop feeling taboo about the disease. Everyone wants to talk about cancer. No one wants to talk about Alzheimer’s.

You have a gift for metaphor, like when you compared the isolation of Alzheimer’s to the occasional exile on Pluto, far from our world. When you’re confused, does using a metaphor help 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 would forget, anecdotes, research. I wrote On Pluto with the encouragement of several friends, including Lisa Genova. When I can’t think of a word, I play charades with my MacBook Pro: “Looks like…” I write in lists of clues, Google stuff, and then you click on it closer and closer. It may take me 20 minutes to find what I’m trying to figure out. I do it with the help of God. I always tell people that I’ve committed every sin except murder and adultery, so I’m not an altar boy – even though as a child I was an altar boy. …I just lost my train of thought. What was I saying?

The importance of God.

Yeah. My writing comes from my soul. I look at my laptop and 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 on this journey with Alzheimer’s has gotten better, more lyrical. And also, you’re less of a con—-, Greg. Which I find wonderful.

I couldn’t write On Pluto today. My writing takes exponentially longer. It’s still just as good. But it takes ten times longer now.