Losing Her: A Story of ALS

August 23, 2023
**This piece is dedicated to Kimberly, a reader who reached out and shared her story regarding her mother’s ALS diagnosis and decline. She asked if I’d be willing to write something that reflected her grief journey– this is what I came up with. I hope it honors her well, and anyone else that has experienced this kind of loss. 

It’s come down to this- wipe off board communication. And even that is hit-or-miss depending on how the day goes. The letters ALS are so simple and uncomplicated, the exact opposite of the havoc it’s wrecking on my mothers body. 

It’s killing her. 

Her body is working against her in a war she stands no chance against. Each day she loses pieces of her mobility, pieces of her independence. And she will, until one day there aren’t any left.

That day isn’t far. 

I’m already grief-stricken. Heartbroken over the frail replacement that now sits where my mother once stood. Devastated over the memories of yesterdays, while anxiously anticipating the moment I’ll lose the tomorrows too. The nurses tell me this is anticipatory grief but it feels like more than that. It feels like losing my mother and myself, all at the same time. Except I don’t get lost completely– entire chunks of my future do. So many losses result from one death. I wonder why the world never prepared me for it. 

I cling to what remains. 

Probably suffocating my disease-stricken mother with my questions, and fears, and anger. There are so many unknowns. She doesn’t say it, but I can sense she is scared too— maybe for herself, maybe for all of us. She is strong in ways we’ve always known and weak in ways we never thought we’d witness. Each day she loses pieces of herself, and it’s always the pieces we’ve loved and cherished the most– her personality, her heart, her honor, her mothering tendencies. 

Herself. She’s losing herself. 

Soon, she’ll lose it all. Soon, she’ll die. Just writing that took my breath away so I can’t imagine actually living that truth. How do you? How do you watch your mother die? And then, how do you carry on without her? 

I will soon find out.

I cherish what is left, even when it’s hard. I watch as she writes that she loves me and that she’s tired. I know she doesn’t want sleep, she wants relief and rest from the battle her body has been facing for years– slowly killing her. Slowly stealing her dignity and quality of life. Never stealing her worth or how much she is loved. 

I love her. And she loves me. We love each other. And we will, until the last moment. Until the last chance. And probably, beyond all of those too. 

But for now, I’ll continue telling her how lucky I am that she’s mine and I’m hers. For now, I’ll continue to decipher wipe-off board messages and non-verbal cues. I’ll cling to all that remains while praying that her ending here on earth will be wrapped with peace and be free of pain. 

And I’ll love her. And she’ll love me. Until the last moment. Until the last chance. And beyond all of those too. Forever. For always. 

xox, Chels

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A wife, mother and educator who has Indiana roots and a passionate spirit. Chelsea is a sappy romantic, coffee junkie, book collector, and person who wears her heart on her sleeve. She’s sarcastic, full of jokes, full of tears, and enjoys writing most when life gets messy or complicated. In 2017, Chelsea's mother passed away. Through her grief journey, she decided to take her mother’s advice and share her writing with the world. One day she gained the courage to honor her mother's wishes and write. It turned out to be one of the best decisions she's ever made.

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