Tom DeBaggio died Monday at the age of 69.
He was 57 when he was diagnosed with early onset Alzheimer's disease, and quite fearlessly shared his experience with NPR over the years — first with Noah Adams and later with me.
DeBaggio lived for plants and the garden. He started out selling tomato plants in Styrofoam cups from his driveway in Arlington, Va., for 25 cents apiece. That backyard business grew into a thriving herb farm and nursery with 100 varieties of tomato plants, three dozen kinds of basil — everything leafy and beautifully strong and fragrant.
When DeBaggio was diagnosed with early onset Alzheimer's, he set to work, writing two books about living with the disease. He described with remarkable candor the frightening progression of his illness.
"This is an unfinished story of a man dying in slow motion," he wrote in the first book, which he titled, with his typical brutal honesty, Losing My Mind.
He called Alzheimer's an "uncontrolled evil" — "the closest thing to being eaten alive slowly."
And he started telling his story on All Things Considered. As he put it, he wanted to "break through the sense of shame and silence Alzheimer's has engendered."
"That's one of the great things about this. You can hug people that you never thought you could hug before," he said in 1999, soon after he was diagnosed. "Oh, and they hug you back, and it's just changed the whole — in many ways, it's changed the whole relationship. There's an openness and a freedom that goes with this when you open yourself up to other people and tell them your secrets."
Noah Adams visited DeBaggio out at the herb farm in Virginia and asked him if he could forget that he has Alzheimer's.
"No. It's the only thing I haven't been able to forget," DeBaggio said. "I guess because part of my life is excavating my mind, and I'm conscious of that. I'm conscious of Alzheimer's being there. And in fact, I'm working it like a vein of gold to try to get something out of it for humanity. I don't know whether I'll be able to do that or not."
DeBaggio was adamant with his family that when he died, he wanted his brain donated to science for Alzheimer's research.
Over the years, NPR heard from many listeners who grew to care deeply about DeBaggio and his family — his son, Francesco, and his wife of 47 years, Joyce.
"He wanted to be out there," Joyce told me in 2007. "He wanted people to see him really bad. He wanted it all recorded. He said, 'Even if I can't talk, I want people to see.' "
"I want to let them know that I was going to die," added Tom DeBaggio. "And this is what I say."
Besides his family, he leaves his books on Alzheimer's, an encyclopedia of herbs he co-authored, and a number of herb cultivars he introduced, including one named for his wife: Golden Rain Rosemary, Joyce DeBaggio.
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