From a Cucumber to a Cure

I met Arthur Cohen and his wife Janet at last year's Compassionate Care ALS gala in Boston. We sat next to each other and chatted throughout the night. I adored him immediately. He told me about being a photographer, seeing Hamilton, and his PickALS project to raise money for ALS--"From a cucumber to a cure." We kept in touch through FaceTime and email, Arthur typing with his eyeballs. Here's an email from me to him after that gala: Hi Arthur, I just said the same thing--how lucky I am to meet and know the most wonderful people through my writing journeys. Spending time with you was the highlight of the gala for me. You have such an enormous, joyful, loving spirit--You are love, and it burst

ALS Film Review

So Much, So Fast This was the first documentary about ALS that I watched. An inspirational and heartbreaking story about architect/builder Stephen Heywood, diagnosed with ALS at age 29, and his brilliant brother Jamie, who became obsessively driven to find a cure. I fell in love with the Heywoods. I wanted to be part of their family and Jamie’s renegade quest. Jamie founded ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company, a place I came to know well while writing EVERY NOTE PLAYED. I met with Jamie and Stephen’s other brother, Ben, in doing the research for my book. They shared the brutality and intimacy, the reality and the hope in loving some

Notes from My Writing Journal: Walking with Elise

Chapter 7, baby!! Okay, what happens next? We need Karina and Richard in the same room again. Actually, I probably need a chapter about her and her life—home, teaching, with Grace. What is unsettled in her and why is seeing Richard again such a necessary risk? What does she want? I need to work more on her backstory, make her three dimensional, more believable. How does she spend her days? Who is her best friend? A neighbor? What would this person lend to Karina and the narrative—would she push Karina toward a career in jazz? A new relationship, moving on past Richard? Would she be a voice/opinion about Richard? Comedic relief? The neighbor teaches at Berkeley School of Music and has no clas

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