Aphasia Regrets

Kimberly Williams-Paisley has regrets. She outlines them in the first chapter of the book, along with the blessings she found through her mother’s experience with primary progressive aphasia. The two balance out to form shades of grey, or, as Williams-Paisley states, “Our lives today are no longer black and white.”

This is the latest installment of our online book club speaking about Kimberly Williams-Paisley’s book, Where the Light Gets In. She writes about her mother’s experience with primary progressive aphasia.

Aphasia Regrets

Williams-Paisley realizes that primary progressive aphasia itself is outside her control. Therefore, she doesn’t have health regrets, but she does have pain when she thinks about the ways they handled her mother’s diagnosis.

On page 14, Williams-Paisley states:

My family made many missteps. I regret the things I didn’t have the nerve to discuss out loud. I wish I hadn’t listened to Mom’s misguided requests for secrecy and autonomy rather than to rational, practical advice from people outside the family who could have offered help to both of my parents. I’m sad that I didn’t keep a closer watch on my father, my mother’s primary caregiver. I’m sorry I had to be a long-distance caregiver, caught between tending my mom and mothering my own children. I hate that my sister wound up carrying so much of the burden.

Speaking up, communicating, watching out for one another: these form the backbone of Williams-Paisley’s list. It’s a personal breakdown of her situation, but they’re universal regrets that so many people share.

To Speak or Not to Speak

The primary regrets all center on communication: Speaking about aphasia inside her family, even when it goes against her mother’s wishes, by asking questions. Also, speaking about aphasia outside her immediate family so she can lean on friends and family for support.

On one hand, it is her mother’s primary progressive aphasia, and her mother’s choice to talk about it or not talk about it, share it outside the family, or not. But the rest of the Williams family is affected by the diagnosis, and they leave support on the table and questions unanswered by holding their tongues.

Having Each Other’s Backs

Williams-Paisley’s secondary regrets all involve her mother’s caregivers. She doesn’t feel like she paid close enough attention to how her father was processing her mother’s situation. Did he have the support that he needed in order to be her primary caregiver? Moreover, because Williams-Paisley lives far away, she has guilt about her own role as a long-distance caregiver. The first situation is easily remedied by regularly checking in on the primary caregiver. The second situation doesn’t have an easy solution.

Aphasia — either primary progressive aphasia or aphasia that comes after a brain injury or stroke — is not something you can predict or practice. You are thrust into an unwanted life change. It is easy to know that rationally and understand that a person shouldn’t have aphasia regrets, but much harder to pull off.

Do you have any aphasia regrets? Have you worked to release them?

Image: Maranatha Pizarras via Unsplash