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On Alzheimer’s: ‘Loss of self my deepest sorrow’

Kim Martin

Readers of The New York Times submitted their best advice from 2022. One gem was, “Everyone is going through something.”

Wise to keep this in mind. I’m sharing my something that is Alzheimer’s disease.

I’ve mentioned before that I sometimes feel bereft, usually due to demoralizing – and exhausting – mishaps and miscommunications. At other times, I feel comparatively energized and engaged. All in all though, my mood is flattening, even on good days. This is particularly disturbing to me because I think of myself as informed and engaging, but that me is disappearing. I mourn this realization.

Loss of self is probably my deepest sorrow.

Even on good brain days, I’m alarmed by my lack of resilience after setbacks, however small and meaningless. And there is oh so much left to do. I don’t want to lose the drive and enthusiasm required to finish the legacy, and advocacy tasks I’ve set out to complete before I am no longer able to do them.

I’m losing the capacity to engage in many of the things I’ve enjoyed most. For example, deep and enriching conversations about big ideas is largely a thing of the past for me because of slower thinking and aphasia. I want to explore the vast and complex wondrous universe portrayed by the Webb Telescope photos, but my short attention span, inability to read and inability to learn, put this out of reach for me.

I love music that makes my soul cry like Luciano Pavarotti’s “Nessan Dorma” or that makes my feet dance like King Harvest’s “Dancing in the Moonlight.” Because I can no longer read more than a few words at a time, my love of great books is also gone forever. I listen to audiotapes, but I can’t remember the characters and storylines. Each time I read a chapter, it’s kind of like starting a new day. Even delicious food and breathtaking views seem a bit duller now. This is what I mean by my flattening spirit.

My father-in-law used to annoy me to no end by saying, “Of all the birthdays/weddings/Italian dinners . . . fill in the blank. . . I’ve ever experienced, this is one of them.” I found it insulting; he thought it was funny. Now, I get it.

This flattening of emotions is distressing. I’m not that person. I can’t bear to be thought of as dull and vapid by my friends and grandchildren. Unfortunately, to be honest, it seems inevitable.

Kim Martin splits her time between Hesperus and Durango, and is a former instructor of Asian history, writing and comparative cultures at Fort Lewis College.