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A Stolen Voice


August 27, 2014 by kristin

My niece challenged me last night to the ALS Ice Bucket Challenge. That kind of spectacle is not really my thing, but words are. So I’ll tell you why I’m glad dumping buckets of water on people has become a trend and brought awareness to this terrible disease.


ALS took my grandmother Charlie Mae’s life in March 1998, when she was 68 years old. It stole years from her, years from us that we could’ve spent with her.

Charlie Mae with me and my cousin, 1982

Charlie Mae with me and my cousin in 1982

I never got to know her adult to adult. I know the truth of her life, her spirit, her story only through others’ words about her, because I never got to ask her myself. Never thought to ask her until it was too late because I was young and selfish and caught up in the storm her illness swirled up in our family.

Besides, ALS stole her speech first. She carried a notebook and a pen to communicate. Then, both slowly and too quickly, ALS stole away the rest of her. Her handwriting became difficult to read. She scrawled three words at a time, then two, then one. For five years, she knew death was coming, and we watched it come, like a tide creeping up the shore.

I don’t remember the last time I saw her, because I didn’t know it would be the last.

If she was still here, she would be 84 now. Would she still sit at her lighted makeup mirror and do her face? Would she still live in the house I remember so vividly, with the War Eagle lamp and the ceramic cat and the green carpet in the front room and Parcheesi in the closet? Would her grandchildren’s photos still fill the walls? Would her bedroom still feel like a sanctuary, a spot of quiet in the din of the Christmastime festivities, with her portraits and her jewelry on the dresser?

Would our family still be together, instead of scattered and broken into strangers? 

Maybe my donation, all these donations, will help other families like ours. Maybe scientists will find a way to stop ALS from stealing more voices, more years.


To my sweet niece who challenged me, I challenge you to talk to your grandmothers. Ask them what it was like when they were little girls and teenagers and newlyweds. Ask them what it felt like the first time they fell in love, and the last. Ask them what it was like to see your mother or father for the first time, what it was like to hold that precious baby in her arms. Ask her if she ever regretted anything, if she ever secretly wanted something she never got or was too afraid to go for.

Ask her what it felt like to become a grandmother, to hold you, the child of her child. Ask her if it was one of the happiest moments of her life – I guarantee she will say yes.

And, dear one, don’t wait until you’re grown up, please. Ask them everything, everything, now.


Charlie Mae as a young woman

Charlie Mae as a young woman

1 comment

  1. Leigh Ann says:

    Kristin, you have touched my heart again. I’m having a hard time seeing to type ’cause my misting.

Sorry, comments are closed.

About Kristin

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Historical fiction writer and reader. Procrastinator. Sewist. Slytherin. Fan of red lipstick, rock 'n' roll, and everything vintage.

Current Work-in-Progress

The Boy in the Red Dress

When her drag queen best friend is accused of murdering a socialite, a Jazz Age Veronica Mars searches for the real killer in the seedy underbelly and glittering upper crust of 1931 New Orleans.


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