This post is dedicated to Susan Suchan who died at 4:30 am last Sunday, January 14 and Thomas DeBaggio who died eleven years after being diagnosed with early onset Alzheimer’s in 2011.
I completed this drawing a few hours before Susan died. Born in 1957, Susan had been diagnosed with early onset Alzheimer’s, around ten years ago, then was re-diagnosed with Fronto Temporal Dementia, and Progressive Primary Aphasia. She was a beautiful red head with a broad smile, and possessed an urgency to communicate her wit and intelligence, despite the aphasia that fragmented her speech. When I met her online, I told her about my depression. She explained that for her, depression was a cloak, a heavy cloak, she would remove consciously. She always aimed to find a way to live positively and with dignity. I am grateful for her gifted writings which contain a salient wisdom about what it means to live with neurodegenerative disease. She advocated for people with dementia all over the planet, showing with great determination that she could still enjoy life, and have meaningful loving relationships with friends and family. She shared her tools for living, smiled, laughed, and touched many with her insight, her humor and grit. May her memory be a blessing.
This is the link to her powerful blog https://susansuchan.wordpress.com
I am reading Losing My Mind, by Thomas DeBaggio, who was diagnosed with early Alzheimer’s at age 57 and died after a 12 year battle with the disease. He wanted to bravely display what Alzheimer’s does to a person as it ravages the brain. In the early stage right after his diagnosis he wrote two books, Losing My Mind and When It Gets Dark: An Enlightened Reflection on Life with Alzheimer’s. He wrote about his life with his wife, and recounts memories of his life intermixed with the shock and despair as he manages to think, function and survive through the early stages. Today I read a page where he describes going to the grocery store and being upset when he came home that a chair was moved. I can relate! A renowned herbalist, he had authored many books on gardening, among them; The Encyclopedia of Herbs; Basil an Herb Lover’s Guide. He took his battle with Alzheimer’s to the world to show people what the experience of this vulture of a disease does to a person. In the later stage, he lost the ability to speak, feed himself, or use his hands, or legs. His devoted wife took care of him for the first ten years, but then was overwhelmed and placed him in a nursing home the last two years of his life.
NPR (National Public Radio) recorded him and his family over the course of the his disease.
The last visit they made began with a question to his wife Joyce: “Would he want us to see him?”
“I know that’s what he wanted,” Joyce says. “Till the very end, he wants for people to know. We just discussed it endlessly. He wanted to throw it in people’s faces basically, this is Alzheimer’s.”