Giving Voice to Alzheimer’s: The Longest Day

By Ann Hedreen

Ann Hedreen in her The Longest Day hoodie

Ann Hedreen is a writer, filmmaker and teacher. She is also a long-time Alzheimer’s advocate and volunteer for the Alzheimer’s Association. Her first memoir and award-winning book, “Her Beautiful Brain,” is now available as an audiobook. Learn more here

As the days get shorter, I’ve been wearing my purple The Longest Day hoodie on most of my run/walks (as I call them; the goal is locomotion: fast, slow or in-between!) I’m proud to wear it, because I earned it this year by doing my first-ever solo The Longest Day fundraising project: I recorded an audiobook version of “Her Beautiful Brain,” my 2014 memoir about my mother, who died at 74 after nearly two decades of living with Alzheimer’s disease. 

Recording “Her Beautiful Brain” in my own voice is something I’ve been wanting to do for years. I had just never connected that desire to The Longest Day, until this June, when suddenly the stars aligned. 

First came an email from the Alzheimer’s Association Washington State Chapter’s The Longest Day coordinator, Janet Callahan, urging people to register. To my surprise, my instant reaction when I read her email was: Audiobook? Hmmm. Maybe? But can I figure out HOW to do it? 

Turns out I could, with a little encouragement!

My goal was to do it myself. I knew my husband Rustin, a longtime filmmaker and editor, would help me, but I didn’t want him to have to take it on as his project. Then I remembered that a friend had recently told me about a user-friendly, free DIY podcasting site. I gave myself loads of time to practice and get comfortable with it, with Rustin as my tech troubleshooter.  

On June 16, just a few days before the sign-up deadline, I posted my fundraiser page, pledging a free download of the audiobook to anyone who donated any amount. I warned it might take me awhile, but that I would get started on The Longest Day, June 20, 2020. 

To my surprise, people took me up on it. And so off I went, sitting at my desk, recording my book in my own voice. 

Day after day, I read into a microphone the words I had labored over so many years ago. I worked hard to get it right. There were lots of do-overs. I could only do a few hours at a time before my voice started to stumble and bumble like a car gone from smooth pavement to gravel. 

And there were moments when my emotions overcame me. I suspect that if you are reading this blog post, you know the kind of emotions I’m talking about because you’ve lived them too. There’s irrational anger at the illness itself; there’s the terrible sadness that someone you love had to live with Alzheimer’s for so long; and there is awe at the courage and pluck it took to do so. 

There were also moments I didn’t mind reliving at all, like when my mother and I were traveling together in Europe — the first time we’d ever been anywhere together outside North America — and we watched Johnny Carson get out of a limousine, wave to the crowd and then flash his thousand-watt smile right at Mom. Or the time she expertly gave our newborn baby her first bath, while Rustin and I watched in exhausted wonder at her gentleness and skill. 

As I worked my way through “Her Beautiful Brain,” chapter by chapter, I thought: Mom would be happy about this. I’m finding another way to share her story. And I’m learning a new skill. She was a teacher, and also, always, a dedicated lifelong learner, even through her years of living with Alzheimer’s. 

In her Alzheimer’s Association support group, she learned to feel less alone. And to summon up the courage to tell people — store clerks, restaurant servers, friends — that she had Alzheimer’s disease and might need a little extra patience. 

When I wrote “Her Beautiful Brain” I wouldn’t have predicted that it would be years before I produced this audiobook. But I’m glad I waited until technology gave me a way to do it myself, the shock of a pandemic gave me the time and The Longest Day gave me the motivation.

Join Ann on Dec. 21 for her next The Longest Day project, Writing Against the Darkness. She explains, “We’ll be writing between dawn and dusk on the shortest day of the year. We’ll start the day together (virtually) with writing prompts and inspiration, then write on our own for as much time as we have: an hour or two or all day long. Then we’ll reconvene as the sun sets to share some stories.”

If you’d like to host your own The Longest Day fundraiser, click here to sign-up. If you register before Dec. 21, you’ll receive limited-edition sunglasses and a t-shirt upgrade!

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