Aphasia Realizations

Kimberly Williams-Paisley encounters many realizations once her mother is diagnosed with primary progressive aphasia. Though the disease moves through typical stages, the length of time a person may have before they lose the ability to communicate is unknown. Her family is unable to imagine the future because that future is filled with more questions than answers.

We’ll talk about these realizations 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.

The Realization of the Unknown Future

While there are realizations that occur beforehand, one of Williams-Paisley’s most profound realizations comes on page 86. She realizes the future will not contain her mother; at least, not as she knows her to be right now. She writes,

I thought about the baby inside me and realized for the first time that he or she wouldn’t know my mother the way I’d known her. How much time will this child have with her? What is our life going to be like without Mom? And then: What is life going to be like with Mom?

She jumps from the inevitable we all face — what will life be like without someone — to the more immediate question of what will life be like with her mother when her mother is unable to communicate. She cannot imagine that future because no one can definitively tell them how her mother will be during various stages of the disease. It progresses differently for each person.

The Realization of the Future Loss

The only certainty is that there will be a time when her mother will be unable to communicate with them. They experience this loss on the small, immediate level when she can’t recall a word. Williams-Paisley comments on page 104:

“Where’s the…?” It was impossible to answer because she never completed it. And the silence filled my father with dread because it was a sign of the worst kind of loss. They could find or replace a purse or a pair of glasses. But he knew that my mother was on the verge of not even knowing what was gone.

Objects can be replaced. It is much more difficult to replace lost words or lost thoughts when you are experiencing primary progressive aphasia. In fact, her brother describes the disease a few pages later on p. 135: “Jay said Mom’s sickness felt like ‘death by paper cut’—tiny wounds of attrition with every new loss—and that’s how it felt to me, too.” It’s loss upon loss upon loss, a little bit at a time, that fills Williams-Paisley with a sense of dread.

Have you ever had powerful realizations rock your world?

Image: George Hiles via Unsplash



  • Christine
    February 27, 2019 at 9:55 am

    This book was so helpful to me. 3 years later we still don’t have an official diagnosis but it prompted outreach and what questions to ask, pushing digging for answers. The hardest part is the irrational and sometimes violent unexpected reactions to the smallest thing. Like walking thru a landline because you never know what the trigger is going to be. Someone who was truly my Best Friend and Biggest supporter for more than half of my life is essentially gone! And No matter how many Drs or tests, shes not coming back – its like having your heart ripped out over and over again.
    Prayers for Health & Peace for All. 🙏💙🙏

  • Robert Brennan
    February 27, 2019 at 10:05 am

    My wife has naPPA and began by signing her name “going silent, Charlotte”. She later gathered the strength to write “Kick PPA”.

    She has a Hugh strong will attitude which has kept her with me for 7 years fighting. Now she is still with me fighting to remain physically active but can no longer understand or say and words. Hard for her, hard for me. Faith in our next heavenly bodies keeps us positive

  • Kathleen M Lynch
    February 28, 2019 at 5:32 pm

    This book was so helpful. Thank you.

  • Amanda Piburn
    March 29, 2019 at 12:28 pm

    My husband was diagnosed with PPA at age 61. I would love to have an online support group, both for him and for me as a caregiver. Is there such a thing?

  • Colette Sutter
    December 30, 2019 at 2:06 am

    I don’t even know where to start, but maybe from when i learned of this and how it was affecting my 61-year-old brother, nevermind what the future held!

    He and his family have been living with this for 2.5 years, i have only been actively with him the past 6 months/2.5 years. His PPA will take him soon, i hope sooner than later! 🙁 I love him so much! Okay ive typed and erased 4 times now, i don’t want to bore anyone.

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