Not Fade Away: A Memoir of Senses Lost and Found

by Rebecca Alexander

  Thank you to my agent, Larry Weissman, who approached me years ago and waited patiently for another five years before approaching me again and convincing me that I had a story people would want to hear.

  Thank you, Susannah Cahalan, for paving the way with your brave and extraordinary memoir, Brain on Fire, and for taking the time to read and improve mine.

  Thank you to my extraordinary doctors who have been a part of this journey with me for years. Thank you to Adeline McClatchy, AuD, for being the first to diagnose my hearing loss and thank you, John Diles, AuD, for being my very first audiologist and lifelong friend. If editing would have allowed, I would have included an entire chapter just about you and what an impact you had on my life as a preteen into adulthood. Your office was a safe haven, a place where I felt completely understood. You were an instrumental part of my support team when I needed it most and you have always made me laugh.

  Thank you to Dr. Richard Oken and Dr. Marcia Charles-Mo. Marcia, you treated me with so much respect and you listened to me. Thank you for always making me feel very safe and supported in your care.

  Dr. Jamie Edmund, you were my very first exposure to therapy. Thank you for your incredible kindness and warmth. I will never forget the time I spent with you. To the Head-Royce School for honoring me so many years later as alumnus of the year. I am still touched by this recognition. Further thanks to Head-Royce for bringing Serena Jones, LCSW, to me. Serena, you have been the most influential clinical social worker in my life to this day.

  A tremendous thank-you to Dr. Mark A. Reiley and Dr. Mathias Masem for literally rebuilding the bones of my body and putting me back together again. To my beloved nurse Roberta at Alta Bates and the many nurses and hospital staff who cared for me during my extended recovery.

  Dr. Jacque Duncan at UCSF Medical Center, your ability to listen and understand vision loss as an emotional experience as well as a clinical one makes me actually look forward to seeing you for my otherwise depressing visual exams. Thank you, Dr. Samuel Jacobson at the Scheie Eye Institute, for being one of the leading experts in the very limited research being conducted on Usher syndrome type III. Thank you to the director of otolaryngology at the University of Michigan, Dr. Steven Telian, for your knowledge and expertise and to Dr. Paul Sieving, director of the National Eye Institute and my former ophthalmologist at the University of Michigan. I am still touched by your kindness, communication, and support while I was in your care and trying to come to terms with what was happening to me. To the unstoppable Richard and Cindy Elden, founders of the Usher III Initiative, and the dedicated advisory board members: Dr. David Saperstein, Dr. William Harte, Dr. Samir Patel, and project manager Lindsay Whyte. Here’s to believing that a cure is in sight and working vigorously to find it. Thank you to my Usher III sisterhood: Cindy Elden, Wendy Samuelson, Yael Saperstein, and Dana Simon, for your morale and support. Further thanks to Cindy and Wendy for being my support and encouragement when it was my time to go under the knife and be implanted.

  To the NYU Langone Cochlear Implant Center and more specifically to world-renowned Dr. J. Thomas Roland and his staff for expertly embedding metal into my skull and carefully inserting all sixteen electrodes into my cochlea. Thank you, Laurel Mahoney, for treating me like an individual despite how many people you see day in and day out and for patiently allowing my entourage to join in on almost every pre- and post-implant appointment. Thank you to speech pathologists Camille Mihalik and Nancy Geller for employing creative techniques while teaching me how to discriminate sounds and learn to hear digitally.

  Thank you, Scott Fried, for so fearlessly educating the world about HIV/AIDS from the very beginning. You played a pivotal role in my decision to pursue a career in a helping profession.

  Thank you, Nicole Feist and Debbie Fiderer from the Helen Keller National Center, for coordinating and implementing my mobility training.

  Thank you, Bill and Tani Austin and the entire team at Starkey Labs Center for Excellence, for all of the years of patience and unending generosity.

  To Sonova/Advanced Bionics: Vanessa Erhard Blattman, Kristine Rafter, Katie Skipper, and the rest of the staff for educating and welcoming me into the bionic world and inviting me to share my experience at the Sonova headquarters.

  Thank you to Craig Kasper, AuD, for so generously offering your time and professional opinion. To Shelley Borgia, AuD, and the New York Hearing Associates team of professionals, thank you for effectively establishing communication between my hearing aid and my cochlear implant.

  To the tireless Maria Bartolillo and Ed McCormack for allowing me to pursue both my personal and professional goals at St. Francis de Sales School for the Deaf. Thank you, Maria, for your ongoing support from afar. You remain an incredible role model to me.

  Joni Smith, superheroine, lover of life, and believer in equality, there are no words to describe your strength and character. You encouraged me to learn sign language and embrace my true self. I always hoped that sign language would give me the ability to have language to express to you what you mean to me.

  My beloved friends throughout the years who have been with me through all different stages of my vision and hearing loss. Craig Stein, Dave Wesley, and Joe Harrington for being my very first friends with RP and allowing me to know that I am not alone.

  From Crocker Highlands, my oldest friends to date, Melissa Neuwelt and Liz Paul, who were my very first best friends and have been with me since the early days.

  To the glorious Skylake Yosemite Camp: John T. Howe for giving us “Shasta Call” and soggy “fat pills,” Marggi Hamilton Lowenberg, Tyler Fonarow, Jon Moore, Jay Levine, Mark Faughn, Rachel Salzman Adler, Spencer Villasenor, Amos Buhai, Sara Kirsner, Nina Rothberg Bailey, Marni and Amy Merksamer, and the Portnoys for keeping the “Skylake Magic” alive. Special thanks to Rob Yturri for leading by example and showing me how to live life with all the love and energy I have in me.

  To my beloved Berkeley girls, Hannah Kahn and Meka Kahn Tull, for all of the love and insane laughter you have brought to my life. To this day many of my favorite memories include the two of you. Dan Kemper, you are the most loyal, dedicated, and supportive friend a set of twins could ever ask for. Lisa D’Orazio for introducing me to the Santa Barbara crew, Kim Michner Eubank, Sophie Han Akers-Douglas, Monica Isaza, just to name a few. You helped me transition back into life and welcomed me as though I already belonged. More love to Lisa for stepping into my life when I needed a friend most and then never letting go.

  From the U of M, Carl Horwitz, Jeremy Miller, Dave Roth, Michelle Ragen Zacchini, and Kristen Korytkowski for being my closest friends and roommates and sharing the best college memories I could have hoped for.

  To Harris Cowan, one of my oldest friends in NYC, for helping me move to and from every apartment and being one of my fiercest supporters. Thank you, Michelle Ho, for being a wonderful friend and for your ability to listen without passing judgment.

  To the unbelievable team at The Fhitting Room in NYC for helping me maintain my sanity on a daily basis with your infectious energy and passion for what you do.

  Thank you, Keith Gornish and Sean Rogers, for introducing me to functional fitness and for teaming up with me to “crush” every Civilian Military Combine (CMC) I am a part of.

  Thank you to Monique Dash, Cathe Thompson, Rachel Sibony, and the rest of the Equinox team for all of the years of support and encouragement you have given me to be the best fitness instructor I can be. Thank you, Lisa Gausepohl from the Sports Club LA, for never giving up on me despite my challenges. And thank you, Maryann Donner from New York Health and Racquet, for genuinely caring about the well-being of your instructors.

  Thank you to the entire Baker family for filling my childhood with so many wonderful shared family memories.

  To my family. My twin brother and my other half, my pride and joy, the one person I can sit with in person or on the phone for hours without even sayi
ng a word and feel both at peace and at home. Your open mind, patience, and awareness of yourself and others are only a glimpse into what makes you a true lover of life and so brilliant. Peter, we share the same heart and soul and love of humanity. You have the incredible ability to make me cry with laughter. Alison, I was beside myself the day I learned I would finally have a little sister. I never could have anticipated that I would later gain a big sister as well. I am forever touched by the way in which you and your family have embraced me. Precious Ava, I can’t wait to see your hands form their first signs. Lauren, you were born into a complicated family and remain the toughest and most strong-minded of us all. Dad, for passing on your undeniable sense of humor, your belief in community, helping others, and fighting for justice. Your children have always been your livelihood. Pol, this book does not come close to describing the force you have been and continue to be in my life. You are the glue to our family and the reason we are all even partially sane. Mom, you have always incorporated your creativity into the way you express love for your children, stepchildren, family, and friends. You are loyal, honest, and incredibly thoughtful. You taught me the importance of listening in order to understand. John, you have been a rock throughout this wild ride that is the Alexander family. Mikey, you taught me the crucial importance of boundaries, and Pete and Sarah, I admire you for your open minds and your patience. Aunt Ellen and Aunt Lourdes for being my prime example of what it means to be in love after all of these years. To Susanne and Larry Kaczor for including me as a part of your family and loving me as though I am one of your own.

  To my marvelous grandmothers: Grandma Etta for always being exactly who you are and never pretending to be anyone that you’re not. Your ability to listen and share your wisdom have helped me greatly. Grandma Faye, you moved across the country to be present in our lives as we grew up, and for that you have been my confidante, my caretaker, and my best friend. Thank you for always reminding me that “nobody promised me a rose garden.” The strength of you both is carried further out into the world through me.

  Olive, my sweet baby girl, the biggest pain in my ass, and the best snuggler ever. You are living proof that the love you give is the love you get back. Alan, you know and understand me better than anyone else in the world. I have learned from you since the day we met, and I continue to learn from you to this day. You are the most intelligent, loyal, respectful, insightful, optimistic, and hysterical person I know. There are no words to truly describe what you mean to me. Caroline, you are my teammate. Your willingness to take my hand and face our fears as best friends has been remarkable. You have taught me the power of communication and learning how to practice commitment.

  Sascha, thank you for listening to me and for always asking questions. Thank you for dedicating so much time and energy to bringing my story to life. And thank you for always keeping my stomach full with so much delicious food!