LISA’S CALL TO ACTION
Dear Reader, Thank you for reading Inside the O’Briens. Through the story of the O’Brien family, I hope you’ve gained a compassionate awareness for what it feels like to live with Huntington’s. I also hope you’ll join me in putting that compassionate awareness into action. By making a small donation to Huntington’s research, YOU can be part of the progress that will lead to a cure.
Please take a moment and go to www.LisaGenova.com and click on the Readers in Action-Huntington’s button to make a donation to Huntington’s research. You’ll be taken to an animated Fenway Park and a fun, interactive way to see the impact of your donation. You’ll also be able to check the tally, both the number of readers who’ve contributed and the total dollar amount.
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!
Namaste,
Lisa Genova
ACKNOWLEDGMENTS
First and foremost, I am profoundly grateful to the families affected by Huntington’s who so openly shared themselves, who entrusted me with their most personal experiences. I spoke with people who have early-, middle-, and late-stage HD, people who are gene positive and asymptomatic, gene negative, and at risk. I spoke with the spouses, parents, siblings, children, and friends of those affected. Many have become my close and cherished friends. I owe my understanding of the complexity of living with this disease to each of them.
Thank you, Cheryl Sullivan Staveley, Kevin Staveley, Meghan Sullivan, Jeri Garcia, Karri Hagler Wilson, Lance Mallow, Kathy Mallow, Robin Renschen, Mary Shreiber, Elise Shreiber, Alan Arena, Lizbeth Clinton Granfield, Rosemary Adamson, Mark Wiesel, Catherine Hayes, Genevieve McCrea, Gail Lambert, Dr. Jeff Carroll, Matthew Ellison (founder of HDYO.org), and Michelle Muller. You showed me the humanity that cannot be found in clinical textbooks.
Thank you, Karen Baker, LICSW, MSW, who immediately knew that I needed to meet Cheryl Sullivan. A special thank-you goes to Cheryl. Cheryl, I’m so thankful for all that you taught me about HD, for all the time you spent with me, for inviting me into your home and your family. And beyond the pages of this book, I’m truly grateful for your generous and loving spirit and our friendship. And I’m deeply grateful I had the chance to know your beautiful daughter, Meghan.
Meghan died of juvenile HD in the early morning of Monday, May 12, 2014, at the age of twenty-six. Meghan was a tenacious advocate for HD, inspiringly courageous in her positive attitude, and known for her contagious smiles and huge hugs. She showed me that even in a situation that appears hopeless, love and gratitude are possible. Meghan, thank you for touching my life and countless others’ with the way you lived. I think of you every day.
An enormous thank-you to the many health-care professionals who so generously took the time to help me gain an accurate picture of the neurological, genetic, scientific, and therapeutic aspects of living with HD. Thank you, Dr. Anne Young (neurologist), Dr. Steven Hersch (neurologist), Rudy Tanzi (neuroscientist), Alicia Semaka, PhD, CCGC (Canadian Certified Genetic Counsellor), Judy Sinsheimer (clinical social worker), Suzanne Imbriglio (physical therapist), David Banks (behavior specialist), and Allan Tobin (former senior scientific advisor for the CHDI Foundation).
A huge, admiration-filled thank-you to the police officers who helped me understand the day-to-day life of their jobs. When I began writing this book, I knew I wanted to raise the reader’s awareness of Huntington’s. After all I’ve learned, I hope this book also generates an appreciation and gratitude for law enforcement officers. Thank you to Officers Daniel Wallace, Richie Vitale, John Quarranto, retired officer Frank DeSario, and Detective Melissa Marshall.
A special thank-you to the Boston police officer who wanted nothing to do with me. Because of him, I met Officer Danny Wallace, who became my daily police consultant, my “pusher,” my muse, and my dear friend. Danny, you gave so much more than I asked for, and this book is infinitely better for all that you contributed. Thank you for meeting me in Charlestown and on Cape Cod, for the ride-alongs, the trips to the stations, for explaining and reexplaining, every rambling, every photo, every e-mail and text, for reading the drafts, and so much more. I adore and admire you and am so grateful that our paths have crossed. I thank my lucky stars all the time that the first officer I met in Charlestown wouldn’t talk to me. There are no coincidences, right? Danny, I’m so blessed to know you and call you my friend.
Thank you to the Townies: Jamie Kelly, Jack Sullivan, and Frank and Carol Donlan. After a long and courageous battle with cancer, Carol passed away while I was editing this manuscript. Carol, thank you for sharing your childhood stories with me, for telling me about the neighborhood and the man you loved.
Thank you to Allison Sloan, the wonderful Toonie and senior library associate with the Reading Public Library who spent a day with me, giving me the grand tour—walking through Town, introducing me to neighbors, sharing fun facts both historical and current.
To better understand Katie’s life as a yoga instructor, I enrolled in Jill Abraham’s Power Yoga of Cape Cod two--hundred-hour yoga teacher training while writing this book. I completed the two hundred hours and was certified in May, one week before completing the first draft. For what they contributed to Katie’s character and the countless ways my own life has been enriched, I am forever and deeply grateful to my fellow yogis and teachers: Jill Abraham, Leigh Alberti, Jed Armour, Katie Briody, Keveney Carroll, Rhia Cataldo, Eric Clark, Victoria Diamond, Andrea Howard, Heather Hunter, Ed Jacobs, Victor Johnson, Kristin Kaloper, Michelle Kelly, Haley King, Kadri Kurgun, Amy Latham, Alicia Mathewson, Terri McCallister, Lauren Miller-Jones, Jessica Riley Norton, Andrea Odrzywolski, Kelley Field Pearce, Heather Pearston, and John Perrone.
Thank you to Susanna Vennerbeck, formerly a dancer for the Boston Ballet, Jennifer Markham, a teacher for the Boston Ballet, Sylvia Deaton, currently in the corps de ballet at the Boston Ballet, and my beautiful cousin Lizzie Green, who attended the Boston Ballet School.
Thank you to my dear friend Greg O’Brien, who shared his love of and many books about his Irish heritage. Thank you to Rose Summers, who shared many great stories about Ireland and growing up Irish Catholic. Thank you to Beth Schaufus Gavin, my beloved Irish friend of thirty years now, who answered all sorts of questions about Irish songs, Protestants, and beer. A wink and a nod to your dad, who inspired the character of Michael Murphy.
Thank you to my amazing assistant, Kate Racette, who accompanied me to Charlestown and made those trips productive, smooth, and fun, who researched all manner of facts and figures for me, and who wears a hundred hats every day to make my writing time possible and my overall quality of life wicked awesome.
Thank you to my brother, Tom Genova, who fielded any and all questions related to Boston sports teams. Thanks again to my brother and to my lovely friend Danyel Matteson for sharing personal stories about their beloved dogs.
Thank you to Larry Lucchino for answering many questions related to the Boston Red Sox and Fenway, for explaining the important difference between a ballpark and a stadium. Thank you to Stacey Lucchino for so generously inviting me to Fenway, for seeing the possibilities in raising urgently needed money for HD research and then unflinchingly rolling up her sleeves. Thanks also to Dave and Lynn Waller for generously jumping in, for contributing your amazing talents to this worthy cause.
Thank you to Ragdale for the magnificent writer’s residency and to everyone who made my time there so productive and magical—Jeffrey Meeuwsen, Regin Igloria, Jack Danch, Cynthia Quick, and Linda Williams. My gratitude and love to the generous Forever Om Yoga and Lake Forest community—Sandra Deromedi, Brian Floriani, Areta Kohout, and Jeanna Park.
A loving thank-you to my brilliant and inspiring friend Michael Verde, who generously gave me time and space to write during the Memory Bridge retreat (memorybridge.org) at the Tibetan Mongolian Buddhist Cultural Center in Bloomington, Indiana.
Enormous gratitude to Vicky Bijur and Karen Kosztolnyik for their careful and insightful feedback on many drafts. Thanks also to Carolyn Reidy, Louise Burke, Jen Bergstrom, Jean Anne Rose, Jennifer Robinson, Marcy Engelman, Liz Psaltis, Liz Perl, Michael Selleck, Wendy Sheanin, Lisa Litwack, and Becky Prager for supporting this book in such a huge way.
A huge-hearted thank-you to my beloved early readers: Anne Carey, Mary MacGregor, Laurel Daly, Kim Howland, Kate Racette, and Dan Wallace. And then Cheryl Sullivan and Jeri Garcia. Thank you for reading, for cheering me on, for your feedback, love, and support. Cheryl and Jeri, thank you for having the courage to read this story, for trusting me, and for giving me feedback. I love you both.
About the Author
Author photograph by Greg Mentzer With more than one and a half million copies in print of her critically acclaimed bestsellers—Love Anthony, Left Neglected, and Still Alice (also a major motion picture)—LISA GENOVA has captured a special place in contemporary fiction, writing stories that are equally inspired by neuroscience and the human spirit. She has a Ph.D. in neoroscience from Harvard and travels worldwide speaking about the topics depicted in her popular novels. She lives with her family in Massachusetts.