Primary Progressive Aphasia and the Definition of Self

Kimberly Williams-Paisley’s mother wasn’t a static entity. She didn’t come with a single definition. She changes throughout the opening of the book, sometimes showing her impish side and other times displaying her anxiety. She was always a complex person, but the changes in personality associated with primary progressive aphasia deeply affect her daughter.

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.

Who Is She?

Williams-Paisley discovers that it’s hard to write a definition for a person that takes into account their whole being. She asks on page 9 the central question for the book:

Who was this mother of mine? — I’ve asked myself that question many times since she was diagnosed with primary progressive aphasia, a rare form of dementia, in 2005 at the age of sixty-two. She has since become someone I barely recognize. I miss her––the mom from long ago, before any of this started.

Is she still her mother if she doesn’t act like her mother? What if she can’t communicate that she understands her daughter is her daughter?

Who Is She Not?

At the same time, Williams-Paisley recognizes that her mother is NOT her disease. She would never describe her mother as someone with primary progressive aphasia, even if that’s the way other people in the world define this complex woman.

On page 12, she imagines a day in the future when her mother’s brain may be studied:

They may zoom inside the cells, searching for tangles resembling a jumble of spaghetti. Her brain overall will most certainly be smaller than normal, and some of the tissue might be slightly yellow or green instead of the usual gray. But they won’t be able to detect my mother’s courage. They won’t see her stubbornness, or humor, or infectious passion for life. They won’t be able to measure how much she loved her family or what kind of parent she was. My mother is not her disease.

It may loom large over their life. It may even affect her mother’s personality. But primary progressive aphasia is not part of who her mother is at the core.

This small distinction is everything. It takes away the power from the disease and gives back dignity and complexity to the human at the center of the situation.

Jump into this conversation to talk about how you define yourself.

Image: Romain Vignes via Unsplash