And today, it’s out in the world
The most personal essay I’ve ever written is now public
As of today, my story is live in HuffPost Personal. It’s the most difficult thing I’ve ever written, because it’s also the closest to me. The most painful. It’s full of things I found hard to reveal and hard to express.
The story’s title is “Dementia Has Upended My Family And I Don’t Know How Much More I Can Take.”
That wasn’t the title I pitched. But when the editor sent it to me, even though it made me squirm a bit, I knew it was spot on. Because it expresses another feeling that I find hard to confront.
It’s a story about my beloved older sisters, both of whom have dementia. Not the same kinds: my oldest sister was diagnosed first, with Alzheimer’s. Then a few years later, my middle sister began showing mysterious symptoms that affected her both physically and cognitively. She was eventually diagnosed with corticobasal degeneration, a rare, progressive, ultimately fatal neurological disease.
“Write the tale that scares you . . . I dare you.”
So said Michaela Cole, the showrunner for I May Destroy You, in her acceptance speech for the Emmy she won in 2021. And so say numerous other writers.
In this story, I did that. And while I’m proud of the result, it still scares me.
I had so many doubts. Was this even my story to tell? What would my family members think? Was I making too much of my own pain at watching my sisters’ struggles? After all, they’re the ones who are afflicted.
It’s not like I’m their direct caregiver. I’m not spending every moment at either of their bedsides. I live several states away and visit when I can. Have I earned the right to publicly examine what it’s like to witness the slow decline of sisters I grew up hero-worshiping?
But this is the story I have to share
And by “have” I mean it in both senses: ownership and obligation. Any devastating, life-changing disease affects not only the person with the diagnosis. My hope is that other people who have loved ones with dementia may see some of their experience acknowledged and validated in my story.
The sense of helplessness. The frustration. The overwhelm. Sometimes, the dark humor.
Enduringly, amazingly, the love, remaining at the core like an inextinguishable ember when all else has burned away.
I hope my story is taken in the spirit I intended it. I hope it does some good.
I hope you read it. If you do, please comment and let me know what you think.