The Perspiring Writer Magazine

Writer Robert Ruark often ribbed his friend Truman Capote about his writing ritual. Capote wrote in longhand, at a slow pace, while lying down. Ruark sat at a desk surrounded by a secretary and several researchers, and prided himself on producing several thousand words a day. One day Ruark boasted to Capote, “I wrote five thousand words today. How many did you write with that little quill pen of yours?”

Capote said, “Just one, but it was the right word.”

Writers strive to put the right words in the right order, to create well-constructed sentences. Think about a day when your writing wasn’t going as well as you’d like; when you couldn’t find the exact words you needed to convey a thought or image. Now imagine you’re writing a memoir, while at the same time your mind is being ravaged by Alzheimer’s disease.  

That’s what Thomas DeBaggio began doing in 1999 at age 57 after being diagnosed with early onset Alzheimer’s. Aided by family and friends and material he wrote earlier, the former newspaper journalist, commercial herb grower, and author/co-author of several books on herbs, combined memoir with a chronicle of his progressing disease. Now 67, he doesn’t remember writing Losing My Mind: An Intimate Look at Life With Alzheimer’s, and When It Gets Dark: An Enlightened Reflection on Life With Alzheimer’s (Simon and Schuster).   

Losing My Mind was cited by New York Review of Books as “Lit with intelligence... For its base honesty, for its awful beauty...it won’t go out of date.” Other reviewers called it noble, life-affirming, unbearably poignant, frightening, powerful, and breathtaking.

DeBaggio’s prose is all that and more. It’s poetic, intimate, inspiring, sad, warm, humorous, emotional, and richly evocative of time and place. He described his anger, fear, frustration, sorrow, bewilderment, humiliation, nightmares, and hallucinations brought on by an accidental overdose of prescribed drugs. He explained how all this affected not only him but his artist wife, Joyce, and their son, Francesco, who now runs the family herb business in Virginia.

In Losing My Mind, DeBaggio wrote that AD “can isolate you quickly in a cocoon of sorrow,” and that most people hide the disease from themselves and from others. Not long after being diagnosed, after some of the anger and depression waned, he decided that perhaps some good might come of his illness. He wrote, “After forty years of pussyfooting with words, I finally had a story of hell to tell.”

In the first book, he admitted that he spent several minutes trying to remember how to spell a common word, and realized the day would come when he could no longer write a clear sentence and tell a coherent story. “That day will be the actual time of death.” He referred to his brain as “a jumble of words awaiting order, with nowhere to go.” And, “The words are under control but the letters that form the words squirm in their own direction.”

By the time he wrote book two he was spending an hour or more searching his mind for a particular word and how to spell it. “I sit at my worktable and rub my hand over the hard brown wood. I try to squeeze words onto the clean white paper. I cannot spill the words hiding in my brain.”

Repetition within the two books bears witness to his fragmented thinking. Yet, scattered throughout are observations so memorable that one wonders how he could have composed them. “More than sweet recollections are at stake when memories begin to lose their leaves. Fire scours the brain, disabling mind and body and squeezing what is left of life hanging on a tombstone.”

Through his two books and multiple media appearances Thomas DeBaggio put a face on a dreaded disease, the face of a relatively young, thin, wiry man with gray hair, an unruly mustache and a haunted look in his eyes. He and his family did a series of interviews with Noah Adams for National Public Radio’s All Things Considered.

He was mentioned in a New York Times article about AD, and featured in articles in the Washington Post, USA Today, the Houston Chronicle, and other papers across the country. He appeared on Good Morning, America, and he and Joyce appeared on Oprah. HBO cameramen frequently followed him around for a documentary on AD.

DeBaggio found his voice as a spokesman for himself and others whose minds and souls are being eroded. In When It Gets Dark he wrote this stunning passage: “It has not been long since I looked into the chaos of the abyss and cried. Now that tarnished world beckons again. I loosen shards from the steep walls to begin my long descent into the lonely world of silence. It is a world so secret its vocabulary has not been written.”   

It appears, however, that the vocabulary of Alzheimer’s disease has been written, word by word, sentence by sentence, a legacy from a man who wrote, “The only time I feel alive now is when I am writing, under the spell of work and memories.”

Joyce DeBaggio said on NPR that she would like to organize Tom’s last, scattered writings into another book. “He wrote and wrote and wrote,” she says, “because he knew he didn't have much time.”

In one of those unpublished works he revealed, “Now that I have skinned the tree, whistled a dirge for friends gone, waggled a finger in disgust and anger, it is time to be silent and wait for the next tear to fall. This is the way the world ends, with clouds of spit ringing your mouth and stuttering screams of helplessness, as it was in the beginning. Go on. Keep going on. Struggle to stay alive, even as the dark night falls with angry shouts and burning tears.”

Tom no longer writes. He no longer remembers his friends, neighbors, and customers, but we remember him. 

When my husband was an apprentice Master Gardener in Virginia, he worked for Tom in his greenhouse and they became friends. Gary always came home wearing a potpourri of herbal scents; among them my favorite, rosemary. 

Today, when I walk in the garden, I pick a sprig of rosemary to carry with me, and I think of Tom. 

There’s rosemary; that's for remembrance.

[To read some of Tom’s prose go to http://www.debaggioherbs.com and click on Peep’s Diary, a column he wrote for his herb newsletter.]