Every Note Played(72)

“Go-to New-York. Play-jazz. Live-your-life. Be-ha-ppy.”

She sits still in the chair, amazed to be hearing Richard’s voice again, stunned by his message, these words she’s always wanted, needed. She plays it again, and the sick feeling in her stomach dissipates. Her heart is pounding, awake, excited. She plays it again, and his words release the last of her grip on twenty years of blame and resentment, of being right at any cost. The cost has been astronomical.

A plan for her future forms as she listens, determined thoughts that sound pitch-perfect in her mind’s ear, a composition of notes she’s been wanting to play her whole life. She’s going to pack up this room, and then she’s going to need more boxes. But first, she plays his message again, grateful to hear the sound of his voice, forgiving him, feeling his presence in this room and in his words, knowing she, too, is forgiven, free.





LISA’S CALL TO ACTION


Dear Reader,

Thank you for reading Every Note Played. Maybe prior to reading this book you read Tuesdays with Morrie, watched The Theory of Everything, or dumped a bucket of ice water over your head. You probably had some awareness of ALS. I hope you now have a deeper understanding of what it feels like to live with this disease.

I also hope you’ll join me in putting that empathy into action. By making a donation to ALS care and research, you can be part of the progress that will lead to treatments and a cure and help provide proper care to the people who desperately need it now.

Please take a moment, go to www.LisaGenova.com, and click on the “Readers in Action: ALS” button to make a donation to ALS ONE, an extraordinary organization determined to deliver a treatment or cure for ALS and dedicated to offering improved care now. For more information on ALS ONE, go to www.ALSONE.org.

Thank you for taking the time to get involved, for turning your compassionate awareness into action. Let’s see how amazingly generous and powerful this readership can be!

With love,

Lisa Genova





ACKNOWLEDGMENTS


This book began with Richard Glatzer, who, along with his husband, Wash Westmoreland, wrote and directed the film Still Alice. Richard had bulbar ALS, which means that his symptoms began in the muscles of his head and neck. I never heard the sound of Richard’s voice. He brilliantly codirected Still Alice by typing with one finger on an iPad.

Richard, I am forever grateful to you for all you gave to the creation of the film Still Alice, for sharing with me what it feels like to live with ALS, for showing us all what grace and courage look like, for not giving up on your dreams. Richard died on March 10, 2015, shortly after Julianne Moore won the Oscar for Best Actress for her role in the film.

I met Kevin Gosnell, his wife, Kathy, and his sons, Jake and Joey (and later Scott), shortly after Kevin was diagnosed with ALS. Within minutes of knowing him, I knew three things:

1. Before ALS takes him, Kevin is going to change the world.

2. He’s also going to change me.

3. I love this man and his family.

Right after Kevin’s devastating diagnosis, he framed his terrifying situation in the most selfless way I can imagine. He thought, “How can what I’m about to go through serve others?” He then gathered the best people in medicine, science, and care and formed ALS ONE, an extraordinary collaboration determined to discover a treatment or cure for ALS while promising the best possible care to people living with ALS now. I invite you all to learn more about Kevin’s important legacy at ALSONE.org and get involved. Kevin passed away on August 8, 2016.

Thank you, Kevin, for inviting me into your home, for sharing your life and family with me. I owe so much of my understanding of ALS to you. But beyond that, you were simply one of the best human beings I’ve ever known—your generosity and grace; your loving leadership; your unwavering sense of purpose, of contribution to the world beyond yourself; the life lessons you gave to your boys, which I now give to my children; the enormous love you shared with your family and everyone who came into your life. I always felt like part of your family in your home. I love and miss you. I hope I’ve made you proud.

I met Chris Connors at the ALS clinic at Massachusetts General Hospital six days after his ALS diagnosis. I was struck by how calm and laugh-out-loud funny he was given his situation. I adored him immediately and asked if we could stay in touch. We spent the next many months corresponding by email. His “ALS Diary” was intimate, vulnerable, heartbreaking, and hilarious. I laughed and cried through most of his emails.

Chris, thank you for sharing your humor, how much you loved Emily and your boys, your fears, your courage, and so many specifics of dealing with the losses that come with ALS. I feel incredibly lucky to have known and loved you. Chris died on December 9, 2016. I encourage you all to Google his obituary.

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.