“End of Maintained Trail,” read the sign. “Travel Safely. Leave No Trace.” We had hiked the 3.1 miles up to Glacier Basin in Mt. Rainier National Park on a mid-June day that looked like late July: wildflowers everywhere, sky bluer than blue, glaciers looking decidedly underfed. I could use that “end of maintained trail” metaphor to riff about global warming, couldn’t I? But my mind is traveling in a different direction. More of a life direction. More of a… what it might feel like to get a scary diagnosis direction.
For 5.3 million Americans living today, that diagnosis is Alzheimer’s disease, and it may as well come with a trail’s-end message attached: This is the end of the maintained trail, pal. Sorry. Travel safely. Oh, and leave no trace of your fears and feelings because frankly, the rest of us can’t handle hearing about it. For their family members, the diagnosis message is the same: your life, too, will now proceed on unmarked terrain. There will be rocks, some slippery, others sharp. There will be immoveable boulders. Crevasses of anguish. The endless putting of one foot in front of another, as you wonder what lies around the next switchback or over that looming ridge.
The Alzheimer’s Association recently switched its awareness month from November—cold, barren, dark—to June: mild, lush and flooded with light. At first, I didn’t get it. November had always seemed like the perfect Alzheimer’s Awareness month to me. But I think the point is to get us all thinking about just how long the days are for people with Alzheimer’s and their caregivers. What a marathon this diagnosis is. What a steeplechase—a better word, with its implied challenges and roadblocks and muddy sinkholes.
June in the Northwest is often a steeplechase sort of month in which it’s never quite safe to plan a picnic or plant something that might not respond well to a sudden chill or storm. It’s a month in which you never quite know expect. The only thing you do know is that the days will be long, and one of them will be the longest day of all. And mostly, we view that as a good thing: those long, creamsicle Solstice twilights and sunrises; those nights that even at midnight, never seem fully dark.
On this year’s Solstice, Sunday, June 21st, I’ll be participating in an Alzheimer’s Association event: a “Longest Day” write-and-readathon at Seattle’s University Bookstore. It’s our first year, so we’re not quite sure what we’re doing and we’re definitely not going to try to keep it up for all 16 hours between dawn and dusk. But for four hours in the afternoon, our goal will be to read and write in honor of someone we love who is a caregiver or is living with or lived with Alzheimer’s disease. For me, that will be my mom. I don’t know yet if I’ll write about her or Alzheimer’s—I’ve done quite a bit of both. Maybe instead I’ll write about some of the things she loved to do. Or her favorite books and authors. Or how she might have liked to fill a Solstice day if she were alive and well.
Mom’s life was never much of a maintained trail. She scrambled and improvised all the time, which made her a great role model for her six children, especially as we tried to figure out how best to help her when Alzheimer’s began to rumble like an avalanche after a June rain. But she was an English teacher. She loved reading and writing. I like to think she really would be honored by a write-and-readathon, on the year’s very longest day.
The Details: June 21, 1 to 4pm, University Book Store, Seattle, the Alzheimer’s Association’s Longest Day” write-and-readathon: Join us! or come for the Open Mic reading at 3pm.
Just in: a new review of Her Beautiful Brain from Full Life Care blog editor Kavan Peterson. I am so honored to be speaking at Full Life’s fundraising breakfast in October. You can buy Her Beautiful Brain from Amazon or any independent bookstore. Find a bookstore here. Order the Kindle version here.
“Beyond the trail…” describes Alzheimer’s and how people tiptoe around the subject quite well. My boys are getting used to their farfar (Swedish for father’s father) and his quirky oddities, his forgetfulness. Carter told me the other day that we can’t always trust what farfar says but then he was quick to point out that it was really just because of “the Alzheimer’s”. I am saddened and angry anyone has be inflicted with such an awful thing but I hope Cody and Carter learn from this, and take some good from it.