Before We Disappear

I became a better person because of Alzheimer’s disease.

I had the rare privilege of working in the dementia unit of a nursing home for several years. The lives I encountered there were unique. Their stories both heartbreaking and life-affirming. Those five years were some of the hardest years of my life, personally. I had just lost my career, my church, my sense of purpose….but I slowly found my way, learned about life, and became a better human being, because of the time I spent in the nursing home.

There was one resident who still stands out in my mind. I’ll never forget her. She had been a high school English teacher. She loved sarcasm, pizza, and vanilla milkshakes with almond extract in them. She was funny, and witty, and most days, with it enough to know that she had dementia and was running out of time. 

One night, as we sat around drinking milkshakes after dinner, I started asking them questions.

Janice,” I said, singling out our funny, sarcastic retired teacher, “what’s the most important thing you ever learned?”  She, in typical style, paused, took a sip of her vanilla almond milkshake, and said, “All the education in the world isn’t going to do you a damn bit of good if you’re not kind to other people. Love people, and you’ll teach them more than just a subject.”

I was stunned by her answer, but I decided to press her a little further. “Ok Jan, if you could leave one piece of wisdom for the world, what would it be?”  This time there was no hesitation. “Love each other. Love everyone. Love the dirty kids, the poor people, the homeless bums. Everyone. No exceptions.”

We went around the table that night, answering those two questions at length. As I looked at the people around me, I realized what a diverse group these wonderful people were. A master gardener, a piano tuner, the teacher, the secretary, the spoiled rich girl, the beer drinking, union lounge lizard, the stay at home mom, and me, the activities aide – all united by the common thread of being on ‘the unit’.

As we were winding down and everyone sat mulling over their own thoughts, Janice spoke up again. “we’re getting worse by the day, you know. We’re going to wake up tomorrow and not even remember this conversation. You tell us stories all the time. If you can write like you can tell a story, then I have a job for you. Write about us. Write down what we talked about tonight. Write it all down…before we disappear.

That’s an amazing order to be given. Write about people who otherwise might not be remembered. I was being asked by this woman to preserve their moment in history. And so I accepted Janice’s challenge and agreed to write for her. So I started to write. About her. About them. About their lives, their friendships, the lessons I was learning in the home….and then about others too. And other things.

And I started finding my voice for myself. Last night, A reporter asked me why I chose to respond to the Orlando Massacre the way I did. I thought about it for a minute and said, “I really only know how to do two things — write, and organize, and since words are failing me right now, I had to organize.”

The 49 people who died in Orlando had their stories cut short. As I was standing at the vigil last night, two thoughts entered my mind. The first was a phrase from the musical Hamilton — sung over and over again as a major theme of the show: “Who lives, who dies, who tells your story?”  The second were the words of that funny, sarcastic teacher in the dementia unit, who, through her Alzheimer’s induced fog, implored me to write. impetrated me to tell their stories.

Words have failed me when it comes to the events of the past few days, but last night, I dreamed about Janice. She was dressed in revolutionary war era clothing, and she sang Hamilton to me -“you write and you write like you’re running out of time….you’ll tell your story.”

I’m re-writing my own narrative.

That’s what this year is about for me.

It’s why I’m saying no to a lot of things —

and why I said yes to the vigil.

Like Eliza said in Hamilton, “I’m putting myself back in the narrative.”

It’s time to do what Janice said, and tell the stories.




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