Writing into the Darkness

Author and herb farmer Tom DeBaggio died yesterday. He put us on notice over a decade ago, describing his early onset Alzheimer’s as “the closest thing to being eaten alive.”  NPR’s Noah Adams and Melissa Block interviewed him periodically, and Tom wrote two books about his final journey, Losing My Mind, then When It Gets Dark.

By way of introducing the first, he said, “At first I viewed the diagnosis as a death sentence. Tears welled up in my eyes uncontrollably; spasms of depression grabbed me by the throat. I was nearer to death than I anticipated. A few days later I realized some good might come of this. After forty years of pussyfooting with words, I finally had a story of hell to tell.”

Tom left a legacy of gardening expertise through other books and his herb varieties themselves. And now he’s closed this long chapter. He donated his brain for research, and he completed his own longitudinal research from inside his brain for as long as he was able to, expecting his wife Joyce to share their whole experience to its difficult end.

He’s inspiring, not only for anyone affected by Alzheimer’s, but for anyone who lives, who has a story to tell, an expertise to share, and the mind and memory enough to record it. Thank you, Tom.

http://www.npr.org/2011/02/22/133971224/Alzheimers-Advocate-Thomas-DeBaggio-Dies

Text © Gwyn Nichols 2011