I am not an angry person. I’m not. I’m sure I’m not. So why, then, am I riveted by Greg O’Brien’s rage?
O’Brien is an investigative reporter who, as Maria Shriver put it, “is embedded in the mind of Alzheimer’s, which happens to be his own mind.” Five years ago, at 59, O’Brien was diagnosed with younger-onset Alzheimer’s. Now, O’Brien told Shriver in an NBC interview, “60 percent of his short-term memory is gone in 30 seconds.”
And it fills him with rage. When he can’t remember how to dial his cellphone. When he looks at a lawn sprinkler and can’t remember what it is. When suddenly “you don’t know where you are, who you are, or what the hell you’re doing.”
When you recognize that there will never be enough research dollars directed towards Alzheimer’s until people understand that it’s not always a disease, said O’Brien, that “you get at 85 and then you die, and who gives a s*it.”
O’Brien was fresh in my mind when, a few days later, I read about 16-year-old Alicia Kristjanson of Edmonds, Washington. Kristjanson will be walking in the upcoming Walk to End Alzheimer’s in honor of her father Doug, who died of the disease this year at age 49. She told the Edmonds Beacon she “would never wish what I went through with my father on anyone else, not even on my worst enemy.”
“I am not a very angry person,” Kristjanson explained to me later. “So when I do get angry, for me, the way I’ve gotten out my anger is by volunteering and doing what I’m doing to try to find a cure.”
Alzheimer’s disease: it’s not just for old people.
My mother was in her late fifties when she began to worry that something was wrong with her brain. She was diagnosed at 66 and died at 74. Like Alicia Kristjanson, I would never wish what she went through on anyone. Like Greg O’Brien, I am filled with rage when I think of how much frustration and misery she had to suffer. How little we still know about why it happens. How helpless we still are to treat symptoms, let alone cure or prevent Alzheimer’s, which currently affects more than 5.2 million Americans, including 200 thousand who are younger than 65.
It does help to write. The body of literature about Alzheimer’s is growing. Lisa Genova’s best-selling novel, Still Alice—which she finally self-published after two years of rejections—is now also a feature film starring Julianne Moore and Alec Baldwin and premiering this month at the Toronto International Film Festival. Trailblazers in our own region include poet Holly Hughes, editor of the luminous anthology, Beyond Forgetting: Poetry and Prose about Alzheimer’s Disease;
poet Tess Gallagher, journalist Collin Tong, who curated a collection of essays called Into the Storm: Journeys with Alzheimer’s; poet and memoirist Esther Altshul Helfgott, (Dear Alzheimer’s: A Caregiver’s Diary & Poems) and poet Lon Cole, diagnosed with Alzheimer’s at 61, whose latest book is called alive & thankful. I will be honored to join their ranks when my memoir, Her Beautiful Brain, is published this month.
It also helps to find ways to feel less alone. This month, the Alzheimer’s Association is staging Walks to End Alzheimer’s all over the country, including ten in Western and Central Washington. The Seattle Walk is on September 20th.
When you see or hear news stories about the Alzheimer’s walks, remember that Alzheimer’s is not a condition that inevitably comes with age. It is a terminal illness. It is deadly and indiscriminate. It is the sixth leading cause of death in our country, and the most expensive: more than 200 billion dollars in direct costs this year. And yet research funding for Alzheimer’s lags far behind funding for other illnesses.
Anger is an appropriate response to Alzheimer’s. Those of us who have lived with it or near it have been too quiet for too long.
Thanks to everyone who came to the September 7 Her Beautiful Brain book launch at Elliott Bay Book Company in Seattle. So wonderful to see you all there!
Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:45 a.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area. http://kbcs.fm/listen/podcasts/