Not Fade Away: A Memoir of Senses Lost and Found (23 page)

A
s a psychotherapist, a person living with a disability, someone who has recovered from an eating disorder, and someone who has tendencies toward the neurotic and anxious that seem to be as inherited among Jews as the Ashkenazi disorders that we are plagued by, I have spent a fair amount of time thinking about, reading about, and talking about how to live life now.

I need to find the time to take care of myself, emotionally and physically. I have always had energy to spare, and I know I can’t calm my brain without working out my body. I need to nurture my relationships, with both friends and family members. I always feel as though I have to take more than my fair share from them, so being there to help and support them in return is hugely important to me. I can’t just be the taker. I need to be working toward a goal, to have my sights set on something. The goal can change, but I always need to be focused on something.

Maybe it’s just who I am, but, despite all that I have faced, I am happy, and profoundly aware of how fortunate I am. I know that I will do whatever I have to do to protect that happiness and
well-being, though it’s not always easy. Just like anything else, it takes work, and part of the work is simply feeling satisfied with life and grateful for what I have, and focusing on those things. I think sometimes that because of, not despite, my disabilities and some of the very difficult things that have happened in my life, like my accident, my eating disorder, and Daniel, I am able to make being fulfilled a priority and have found the things that work for me. I believe that people who live very active lifestyles, despite adversity, accept that there is going to be sadness but don’t let it take over their lives.

I know that I need to be happy
now,
and, though it’s not easy, I can honestly say that I work to create that happiness every day. Of course I’m going to be sad or depressed sometimes, and I’m going to think about how much I’m losing, and have already lost, and need to let myself feel that pain.

After I’m done being sad, though, I’ll remember that there are as many wonderful things that I’ll get to keep: Olive knocking me over and licking my face in her joyful enthusiasm at seeing me, whether it’s been five minutes or five hours; my best friend signing secrets into my palm; the strength of my body; the undying love of my family and friends; my sense of humor; and the ability to help others appreciate what they have.

I try to remember to be in the moment, whatever that is. When I’m taking a bite of food, snuggling with Olive, pedaling as hard as I can on my bike. When someone I love hugs me, I can melt into it and accept it fully for the love that it is.

I appreciate the passing of time. Spring, with its crisp newness, the city feeling cleansed from all the rain. I can smell the sweet, slightly bitter smell of hyacinth wafting from the bodegas and see the flashes of yellow daffodils and purple crocuses as they make their way up from the earth. Fall, with its sense of
excitement and longing and nostalgia. Something about the angle of the sun and the way it hits always feels familiar, as though it is tired from the summer and has a softer, lazier feel, not so determined to roast you alive. Metal is no longer hot to the touch, and the loud, irritating hum of air conditioners finally stops. The beginning of fall smells heavier, as the leaves start to bend and color. Time is passing, a year is starting to move toward its close, and I am aware of it, and trying to get all I can from each day.

At the times when my vision is briefly good enough for me to see something that I rarely can, like a star, it feels like a small miracle and can have me smiling for days.

I do think that, for most of us, it’s a choice. We can learn to accept the ebb and flow of life, that we wake up in a dynamic body every day, one that is also cyclical and ever changing. Some days, mine can feel different from hour to hour. I’ll wake up sometimes thinking,
Hey, I can see pretty well,
and by nighttime I feel as though I can’t see a thing. My implant will seem to really improve things one day, and the next I’ll be asking, “What?”
all day. I have to accept it, because without acceptance I can’t live in the
present.

M
y disabilities often take turns jockeying for first place in needing attention. For a while my ears were getting most of the attention, as I tried to get used to the implant. As soon as it started to get even the tiniest bit easier, though, I could once again sense that I was experiencing change in my vision.

It seems to be going through another right now. I’m not noticing the hole shrinking much, but what I can see is getting grainy, especially in dim lighting. When I have patients I want to look directly at them for their whole appointment, I owe them that, but it’s very exhausting to look in one place, and at one thing, for so long. I can’t keep the office as bright as I like, because patients like a quieter, gentler light. I think it can already feel uncomfortable to be spilling out all of your shit to someone; you don’t want to feel like you’re in an interrogation chamber as well. And, as considerate as they are about whatever I’ve told them about my disabilities, this is their time, not mine. Most of the time it’s good for me to totally focus on someone else and to forget everything else in my life. I have the ability to completely
shut out everything else and concentrate on them. My eyes, however, have more trouble doing that.

Sometimes I now see what look like little white slugs circling through my line of vision. I can tell that it’s something that my eyes are projecting, like some strange video game floating in front of me. I hate them. And I hate what they portend. Because what little vision I have had has been clear. Very limited, but clear. The clock is ticking louder now.

When I get up in the morning it’s not as bad. By the end of the day, though, my eyes are exhausted, and I want the dark as much as I want my precious silence.

• • • •

Lately I’ve been thinking about how I’m really a miracle of modern medicine.

For starters, there’s my bionic ear. My wacky, shrill, but nonetheless extraordinary ear. Not to mention my other ear, whose hearing aids—three of them, all for different environments—help enormously. I wish I could say that either of these was a perfect fix. They aren’t—by a long shot—but they improve my quality of life immensely.

Then there’s my reconstructed foot and all of the shattered parts in my body that were mended: bones grafted, breaks set, everything pieced back together like a jigsaw puzzle. Were it not for the extraordinary doctors who have devoted their lives to research, to whom I owe an enormous debt of gratitude, I would be almost entirely deaf, mostly blind, and wheelchair-bound.

Then there are my eyes. The big kahuna. I just took my first vision test in more than two years. I was back in California, and I met with Dr. Jacque Duncan, a wonderful woman who has
been my primary ophthalmologist for more than fifteen years. Although I had lost more vision, it wasn’t any more than what was expected. In fact, when I read the notes that my mother had carefully taken, I saw that in some ways, it had deteriorated less than they thought it would. Still, though, when I got to the end, it read, as it always has,
There is still no treatment or cure for Rebecca’s vision loss.

Even as a skeptic, I can recognize that there might be promise on the horizon. So many people are working toward a cure, using cutting-edge research and methods to try to give me my eyes back, to help so many of us out there. I have to admit that not only am I terrible at science, but I am afraid to get too involved with it all, afraid to spend all of my time hoping, though I am, of course, aware of it. Alan and my parents are wonderful this way; they give me every update, meet with every doctor and researcher, and hunt down every lead. That is something that I would not be able to do myself. Getting through the day is exhausting for me. Although my life is often wonderful and fulfilling, it takes every last drop of energy I have just to get where I need to go, see my patients, teach my classes, spend time with Olive and my friends, and maybe even go on a date. Most of us are probably wiped out after a day in this city that never stops moving, but, since just navigating the sidewalk is a new adventure for me every day, if I didn’t give it my all, I couldn’t do it. I wouldn’t get out of bed. I don’t have the time to hunt down the leads and throw myself into the research and still get done all of the things I want to accomplish in my life.

The work that is currently being done on restoring vision is fascinating, though. Stem cell research, gene therapy, and prosthetics have all shown promise, and some people have even gotten limited vision back with them. Dr. Shinya Yamanaka, who won
a Nobel Prize in medicine in 2012, is leading one of the first-ever clinical trials using stem cells from a person’s own body. MacArthur “Genius Grant” winner Sheila Nirenberg, an extraordinary woman, is working on a gene therapy called optogenetics, which holds great promise for all kinds of retinal diseases. And there are many, many more.

People have encouraged me to get involved in studies before, but doing one can render you unable to do others, and so I’m waiting. Waiting for advancements that will come eventually, soon enough, I hope, to help me, but I refuse to hold my breath. I have to live where I am and to be grateful for the sight that I have. For me there is no other way to live.

L
ast weekend, I went home for my aunt Ellen and aunt Lourdes’s wedding. They have been together for thirty-three years and were finally tying the knot now that gay marriage was legal in California. Peter and Alison were there, with beautiful baby Ava. She’d grown so much already, her face had changed, and I longed so much to be able to watch her grow into a little girl, to watch her body lengthen, to see that gorgeous smile on her as a teenager and at her wedding.

Grandma Faye was there, still rocking it at ninety-six, about to embark on her trip to Asia. My father, Polly, Lauren, and Daniel were all there, too. Daniel and I shared a room, and he told me about his plans for the future. He wants to buy a van and live without any help from my parents. At this point, all I want is for my sweet Danny to be happy. I’ll always hope for that.

During the reception there was a deejay, and Lauren and I started dancing. Peter got up to join us, with his goofy flair, singing along loudly. Then Alison, who is now like a sister to me, too beautiful to look silly dancing even if she tried. My dad joined in
next, doing his usual twist. Daniel got in there, too, still the best dancer, despite everything. The music was so loud that I could really hear it, and it drowned out every other noise. They were familiar, cheesy wedding songs, “Celebration” and “Holiday,” songs whose words were forever seared into my brain, so I didn’t have to hear them clearly to sing along. I closed my eyes and let myself be fully in the moment, dancing with some of the people I love most in the world. I knew that even when I couldn’t see anything anymore, I would be full of joy doing this: dancing, in the dark, surrounded by all the love that I could ever hope for.

I knew, too, that when I flew back to New York, exhausted, Caroline would be there, taking care of Olive, both of them waiting for me to return. I’d ask her to sleep over, and it would be such a relief, after a crazy weekend of family and travel, to finally turn my implant off, take out my hearing aid, and turn out the light. Then we’d lie next to one another, and I’d take her hands and tell her about my weekend, signing my stories into her palms.

My list of acknowledgments could span the length of this entire book so please bear with me.

Thank you to the Gotham Books team at Penguin for your teamwork, editing, guidance, and feedback throughout this entire process. Jessica Sindler, Bill Shinker, and Lisa Johnson for your interest and belief in the power of this book. Lauren Marino for taking the reins, editing, and encouraging us to make it the best it could be. Emily Wunderlich, many thanks for your availability and feedback. Thank you to my publicist, Lindsay Gordon, for introducing and promoting this book to everything public and media related and for taking the time to get to know me personally. Thank you, Laura Rossi, for having the same rockin’ energy as I do and for helping me overcome my fears of social media—or better yet, handling it for me.

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 saying 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!