Kimberly Williams-Paisley’s family didn’t like to speak about unpleasant things. The signs of primary progressive aphasia were there for months, but a strict practice of looking away instead of addressing fears head-on meant the signs were swept under the rug. Avoidance permeated every facet of the experience — from the diagnosis to the aftermath.

It’s a way of coping that Williams-Paisley explores 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.

Belly Flop

Williams-Paisley explains her family’s propensity for avoidance with an example from a childhood swim party. She was invited to participate in a diving contest, but she painfully belly flopped into the pool. She was mortified when she exited the water and saw her future classmates staring at her.

Rather than inquiring whether her daughter was okay and keeping her in the moment, her mother gave her an excuse for getting away gracefully so she could cry in private. Williams-Paisley writes on page 24, “It wasn’t our style to acknowledge that something terrible had just happened.”

This tendency to pretend everything is okay sets the stage for looking the other way when it comes to her mother’s primary progressive aphasia years later.

Ignoring Symptoms

Williams-Paisley points out that the signs of primary progressive aphasia were there for years. On page 64, she talks about a time when her mother “pulled her checkbook to pay for groceries at Stop & Shop, she forgot how to write the numbers. Another time, while people waited behind her in a line, she struggled to sign her name.”

Her mother took a new job at the Michael J. Fox Foundation but struggled to do the work. On page 60, Williams-Paisley recounts these early symptoms:

She’d been having trouble reading as quickly as she used to, and sometimes she struggled to find the right word when she spoke. It wasn’t a persistent enough problem that she shared it with anyone, but it did affect her confidence on the first day of work. She hid her fear as best she could and shook hands with her new colleagues, offered hugs, and laughed to cover her nerves.

She hid her fears, even as she was doing work to bring the general public’s attention to a medical condition.

Covering Symptoms

Her mother’s intentions came from a good place. She didn’t want anyone to be worried. She didn’t want them to be embarrassed or feel exposed. Like the belly flop, her mother wanted to pretend that everything was okay until everything could actually be okay.

And this tendency ran deep. Williams-Paisley explains on page 66,

She didn’t want to alarm the family. I think she was fearful that if she continued to seek other opinions, someone would discover that she wasn’t as smart as we all thought she was, or that it was her own fault she couldn’t get her stress under control. My parents never talked with each other about the possibility of dementia.

Their first thoughts were that the symptoms were caused by stress, never wanting to admit that they could possibly be dealing with something much more complicated.

Moreover, once her mother was diagnosed, she still refused to include her family in a frank discussion. Williams-Paisley explains on page 67 that, “the extent of this further analysis was kept secret from me at Mom’s request until later that year.”

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?

Could you relate to the Williams family’s tendency to not talk about terrible things?

Image: Laura Marques via Unsplash