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



  • Lois Siegel
    September 12, 2018 at 10:37 am

    I’ve rad the book and it was a hard read for me as my husband was diagnosed with PPA. I certainly understand their concerns. My husband and I have moved to an assisted living facility which gives him the care he needs and I am able to take care of me. My caregiving time is much easier with the help. He is a very quiet person and usually very willing to do what we ask him to do. I am importunate that he is not showing any of the manic signs and we feel he probably won’t thanks to medication he is on.
    Thanks for writing the book and sharing the story. I am sharing the book with the staff where we live.

  • Liz Hulls
    October 31, 2018 at 6:22 pm

    I suffer from Aphasia, after having a mild stroke a year ago, age 49.
    My recovery has certainly been a rollercoaster of emotions.
    I think a whole range of feelings come to mind.
    Shock, fear, sadness, frustration , depression and even elation.
    However, now after some time, comes accepting my condition.
    This brings me a great deal of inner peace and most of all,
    I’ve had to work hard to overcome my ordeal, and have been humbled by having to ask others for help ( something I found difficult for me .)
    There is so much support out there if you are struggling with a similar situation as mine.
    And I now know, there are many.

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