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 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.
Chris became my dear friend. Thank you, Chris, for sharing your fears and frustrations and anger, your hopes and beliefs and love. I’m in awe of your artwork and poetry. I’m still envious of your writing! Thank you for reading the first many chapters of this book, for offering me insights and spot-on feedback, for not letting me get lazy with even one word. I love and miss you. Chris Engstrom died on May 7, 2017.
Enormous gratitude also goes to Bobby Forster, Steve Saling, Sue Wells, Janet Suydam, David Garber, Arthur Cohen, Chip Fanelli, and Lawrence Jamison Hudson. Thank you for your generosity and trust, for sharing your experiences and perspectives, for helping me understand ALS for this book, and for sharing wisdom beyond the pages of this story.
Thank you, Kathy Gosnell, Rebecca Brown George, Casey Forster, Ginny Gifford, Joyce Siberling, Jamie Heywood, Ben Heywood, and Sue Latimer, for so generously sharing your experiences with ALS. Your love and support for your husbands, brother, and friend are extraordinary and inspiring.
Thank you, Dr. Merit Cudkowicz, Dr. James Berry, and Darlene Sawicki, NP, for allowing me to shadow you at the ALS clinic at Massachusetts General Hospital, for answering every question I asked, for helping me understand the clinical picture of ALS. It would be easy to imagine a team such as yours needing to build emotional walls. There is no cure for this disease. You witness too much heartbreak, loss, and death. I’m utterly amazed by all of you, so grateful for the kindness, dignity, and humanity you give to every patient, every day, above and beyond the call of pure medical care. You are all heroes.
And then there is Ron Hoffman. Ron is the founder and executive director of Compassionate Care ALS, an organization that provides much-needed guidance, equipment, and comfort to overwhelmed families traveling this unfamiliar, complex, difficult journey. He is an angel and a hero, and I’m beyond grateful to call him my dear friend. He is also the author of Sacred Bullet. Everyone should read this important book. Ron, thank you for inviting me into your world, for the many road trips and house calls, for showing me this beautiful work that you do, for teaching me so much about ALS, living, and dying. You are a gift to every person who is lucky enough to know you, including me. For more information on Compassionate Care ALS, go to .
Thank you to Erin MacDonald Lajeunesse, Kristine Copley, and Julie Brown Yau of Compassionate Care ALS and Rob Goldstein of ALS TDI for sharing what you know about caring for people with ALS and for introducing me to people who have it. Thank you to John Costello for showing me all the fascinating, creative tools people with ALS can use to continue communicating as they become increasingly paralyzed. Thank you for all that you do to help people with ALS stay connected, for preserving their voices. Thank you to Kathy Bliss for helping me understand the important role of Hospice and palliative care.
Thank you, Abigail Field and Monica Rizzio for the wonderful piano lessons. For insights into classical piano, jazz piano, and life as a concert pianist, enormous thanks to Abigail Field, David Kuehn, Dianne Goolkasian Rahbee, Jesse Lynch, and Simon Tedeschi.
Thanks and love to Anabel Pandiella, John Genova, Louise Schneider, and Joe Deitch for taking me to piano concerts; to Gosia Mentzer and Anna O’Grady for answering many questions about Poland; to Jen Bergstrom, Alison Callahan, and Vicky Bijur for your insightful edits and for championing this story.
Enormous thanks and love to my phenomenal publishing team at Scout Press: Carolyn Reidy, Jen Bergstrom, Alison Callahan, Brita Lundberg, Meagan Harris, Diana Velasquez, Jennifer Robinson, Abby Zidle, and Mackenzie Hickey. Thanks and love also to my badass assistant, Kristin Walsh.
Love and gratitude to my team of early readers: Anne Carey, Laurel Daly, Mary MacGregor, Kim Howland, Kate Racette, and Danny Wallace. Thank you for reading the chapters as I wrote them, for going on this ALS journey with me, for your unwavering love and support.
Thanks and so much love to Sarah Swain, James Brown, Joe Deitch, Merit Cudkowicz, Ron Hoffman, and Kathy Gosnell for reading the manuscript and offering invaluable feedback.