Hiding vs. Telling About PPA

Kimberly Williams-Paisley’s family hid her mother’s primary progressive aphasia until they were ready to speak about it. She talks about the many subtle ways they compensated for her mother.

We’ll talk about hiding vs. telling in this 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.

Lack of Discussion

At first, Kimberly Williams-Paisley’s mother wasn’t ready for people to know about the disease. As Williams-Paisley said on page 24, “It wasn’t our style to acknowledge that something terrible had just happened.”

The decision to hide the severity of the situation began much earlier than the diagnosis. As we discussed a few weeks ago,

One gets the sense that Williams-Paisley is setting the stage for how her family will deal with primary progressive aphasia down the road, acknowledging that the lack of discussion leads to a lack of release of life’s stressors. If it’s not their style to talk about things, how will they process PPA when there is so much to discuss?

Now with a diagnosis in hand, there was much to discuss. But that earlier passage hinted at what came after the diagnosis and the situation’s cover-up.

Hiding Aphasia

By page 79, Williams-Paisley talked about how everyone — from her father to her siblings — learned how to cover for her mother.

At home, Dad helped hide her symptoms. He often edited her reports and letters for her job at the Fox Foundation. When she needed help in social settings, she signaled him with a worried glance or a touch on his arm. All of us had learned to patch up awkward silences with small talk during conversations.

From doing her work for her to jumping in to be her voice during conversations, the family was able to hide her primary progressive aphasia from friends, family, and co-workers. They missed out on support that could have been gathered during those early months. At the same time, they told their story on their timeline, inviting people into the news when they were ready.

The situation will need to be dealt with at a point in the future, but in the beginning, it was possible to hide everything that was going on.

Image: Carlos Arthur M.R. via Unsplash