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Darcy Wakefield, Chronicler of Life with ALS

Darcy Wakefield, whose commentaries chronicled her struggle with ALS, commonly known as Lou Gherig's Disease, has died at the age of 35.

In a December 2003 commentary for All Things Considered recorded just a few months after her diagnosis, Wakefield talked about how much she loved running, and how much she missed it:

"I remember running like I remember the sun-filled beach days of my childhood. I remember running like many remember their first love, their first kiss, their wedding. I remember running and feel the ache of absence, the heavy reminder that my life will never be the same again. I am continuously mourning running…

"Even though I no longer run, I still have a runner's soul. It's trapped in a runner's body that won't run. My runner's soul longs to work off the stress of my recent diagnosis and the stress of not running with a good run. It doesn't yet understand what has happened to us. These days I try to take pleasure in what now substitutes for running in my life. The other night, something told me to go down to the beach, and I did, even though it was late and dark. The beach was hard and smooth because the tide was out, and something told me to run. I ran around and around in circles. If you'd seen me, you wouldn't have called what I was doing running, but it was good enough for me. This is what I thought that night as I gave thanks: We are so lucky to be able to do this, all of our nerves and muscles working together, as we move ourselves forward to do this thing we call running."

Wakefield taught English at Southern Maine Community College and published two books, including I Remember Running: The Year I Got Everything I Ever Wanted -- and ALS. She is survived by her parents, her brother and sister, her partner Steve Stout, and their son, Sam.

Copyright 2022 NPR. To see more, visit https://www.npr.org.