Author Matthew Thomas on Mortality, Time, and Losing a Loved One to Alzheimer’s

Matthew Thomas is a native New Yorker and acclaimed novelist who wrote the 2014 New York Times bestseller “We Are Not Ourselves,” a novel that chronicles the emotions of a family as Ed, the college professor husband of protagonist Eileen, slowly declines as he battles early-onset Alzheimer’s. The narrative, while fictional, is largely inspired by Thomas’ own experience with his late father’s Alzheimer’s diagnosis when Thomas was 19. I had the pleasure of sitting down with him to discuss the effect of Alzheimer’s on the loved ones of those with the condition, and how to make it easier to bear.

“So much of the book is taken from the emotional welter of my family’s experiences with my father’s Alzheimer’s,” said Thomas.

”The shock of finding out about Alzheimer’s was extraordinary. My father took it like a champ,” Thomas reflected on when the novel first hit in 2014, When the manuscript that would become a monster bestseller was first being circulated by his agent, Thomas was a high school English teacher at Xavier High School in Chelsea. “He wasn’t really around when I figured out what I wanted to do with my life, so I always imagined him giving me a big thumbs up.”

On the book, he told Straus News, “It reflects what we went through on an emotional, psychological, and spiritual level. So much of the plot, though, never happened. I can’t think of too many plot elements that actually happened, and yet the whole thing really is reflective of our lived experience. But I actually found that working through this material was quite painful. Writing it was kind of a revival of those memories, but I think I might feel a little more at peace about it than I did before I wrote this book.”

When Thomas’ father was diagnosed with Alzheimer’s, an emotion Thomas had to grapple with as a 19-year-old college student was guilt. This sentiment is common among the well in relation to those suffering from Alzeheimer’s or any disease for that matter; it’s hard to justify happily going forward with your regular life when someone so close to you has been robbed of that.

“I felt guilt all throughout the years when I was growing and changing and learning things outside the home and my father was sick,” said Thomas.

“I felt absolute guilt all the time. In some ways, he was always on my mind. I mean, in part that’s because I loved him and he was a wonderful father...But there’s also this double consciousness, which was my absolute, certain knowledge that he wanted me to flourish, that he would have chosen for me to go and do things without him rather than stick around with him. But it’s hard to remember that in the moment when you’re feeling really bad and so it does, in a way, mute your joys.”

But Thomas wanted to deeply underscore that you cannot let your muted joys paralyze you:

“Alzheimer’s doesn’t play out immediately,” he said, “but those years bring with them rapid losses of faculties that change the time we have left...the day that we’re in is always the best day that we’re going to have in a way, and I would say, live that one the most fully.”

“Find a way to spend as much time with that person without the mediation of media as possible,” Thomas urged.

“Sit in a room with this person without the interference of a phone or a television. I think the best thing I can imagine someone doing would be grabbing time with that person now before it gets harder to do so later.”

Thomas’ experience with Alzheimer’s, both personally with his father and by way of writing the book, has taught him immensely about how to live happily, and what values he prioritizes throughout his life.

“I’m hopefully nearing the end of writing another novel. If I were to find out I had Alzheimer’s tomorrow, would I continue writing?” asked Thomas.

“I hope I would. I also wonder if I might more profitably spend my time hugging my kids. And I don’t know, I don’t know the answer to that. But I think when asked, what do you do in the face of the knowledge of either your illness or that of someone close to you? You figure out who you are. You figure out what kind of person you want to be.”

Thomas admits that he is far from perfect, but his experience with his father certainly taught him how to make life worth living, and how to achieve the drive to go about doing that.

“Yes, I may not be better than anyone else at using all my time as wisely as I could, but I’m certainly as good as anyone at feeling really bad when I don’t,” he said.

“My father’s Alzheimer’s taught me to value the time I have and to feel that it’s a gift. To honor it as much as I can, and to remember that not everyone has a body that works, or a mind that works. And to try to use mine as much as possible.”

Thomas is working on his second book following the 2014 release of his debut novel. And of course, learning to savor each of life’s precious moments.