Notes from My Writing Journal: The Woman at the Door

I found these pages from my writing journal, a scene from EVERY NOTE PLAYED that never even made it into the first draft. It has its moments, but I see why I didn’t choose to go with it. What do you think? Chapter 6, baby! What happens next? No idea. I need to loop back with Karina. At some point, we need to visit her history with Richard. I’m not sure if this happens within a chapter or is a chapter of its own. Write it and see, Lisa! Love that we finally had an ALS clinic day with Richard. I need to send him back there at least one more time in the book to check lung function. This will be the decision point of whether or not to go on a vent—like where Chris Engstrom is right now. So what

Stephen Hawking, 1942-2018

When Stephen Hawking was diagnosed with motor neurone disease (ALS) at the age of 21, he was told he had two years left to live. Astoundingly, he lived another 55 years with this disease. Average life expectancy with ALS is 3 years. About 20 percent of people live five years after their diagnosis, 10 percent live ten years after, and 5 percent live twenty years or more. How did Hawking live so long with ALS? This disease typically strikes between the ages of 40-70. Some physicians theorize that Hawking’s younger onset might reflect a version of the disease that proceeds more slowly and plateaus. Yet, his ALS did proceed. The motor neurons that fed his voluntary muscles degenerated. He lost t

Remembering Chris Engstrom

I met Chris Engstrom at his parents’ house on Cape Cod. He was my age, handsome, scrawny, his strangled voice mostly unintelligible. He was an artist educated at Yale and loved hiking in the woods, but he could no longer walk or hold a paintbrush in his hands. The hiking boots on his paralyzed feet broke my heart. But he could raise his eyebrows to say yes, and he could still communicate—at first using a rollerboard strapped to his arm, his hand placed by someone else onto a computer mouse, later with only his eyes using a Tobii. He had a beautiful smile and a twinkle in his eyes—I’m pretty sure he was flirting with me. Chris became my dear friend. Thank you, Chris, for sharing your fears an

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