Listening Closely: A Journey to Bilateral Hearing

by Arlene Romoff

Overview

Imagine what it would be like not to hear a sound--no music, no friendly voices, no children's laughter. Arlene Romoff doesn't have to imagine how it would feel: she lived it. Although she was born with normal hearing, in her late teens it began to slip away, as if someone were lowering the volume of the world around her. Over the next twenty-five years, Arlene began a long, slow descent into deafness so profound that no hearing aid or assistive device could help. The experience was devastating.

But then Arlene opted for what she considers a miracle: She got a cochlear implant. Using electrodes threaded into the cochlea, an internal computer chip, and an external computer processor, cochlear implants bypass the damaged portion of the cochlea and stimulate the auditory nerve directly, allowing sound to reach the brain. Amazingly, she could hear again.

Arlene's journey, however, isn't just about the magic of technology. What she endured reveals as much about the strength of the human spirit, about the wonders of chance and fate, and about making the most of what life dishes out. For Arlene, events seemed to unfold almost as if they were a part of some elaborate plan: just when she went deaf, her insurance company began paying for the implants. And ten years later, when her old cochlear implant finally failed she received new state-of-the-art technology and underwent yet another metamorphosis--one that helped her continue to counsel others in a similar situation.

LISTENING CLOSELY will give you a chance to walk in Arlene Romoff's shoes, to understand the pain of her loss and the joy of once again being able to hear the music of the world. Those suffering from hearing loss--or who have loved one who is--will find Arlene's very special journey both inspirational and informative.

Product Details

ISBN-13:	9781632892362
Publisher:	Charlesbridge
Publication date:	05/28/2019
Sold by:	Penguin Random House Publisher Services
Format:	eBook
Pages:	176
File size:	1 MB

About the Author

Arlene Romoff co-founded Advocates for Better Communication, the advocacy committee of the Center for Hearing and Communication (CHC), and the Hearing Loss Association of New Jersey. She also serves as a governor-appointed member of the NJ Division of the Deaf and Hard of Hearing Advisory Council, and sits on other advisory boards in the state. In 2010, she received HLAA’s State Organization Award.

She is the author of the book HEAR AGAIN--BACK TO LIFE WITH A COCHLEAR IMPLANT, as well as numerous articles for magazines and newsletters. Her pioneering efforts helped bring open captioned live theatrical performances to Broadway, London, and regional U.S. theaters, for which she received the Humanitarian Award from Theater Resources Unlimited. Considered an expert on hearing loss, Arlene is consulted and speaks on a wide range of topics including cochlear implants, assistive technology, accessibility, advocacy, and sensitivity training.

Arlene has two grown children and resides in New Jersey with her husband, Ira.

Read an Excerpt

Prologue

Is life a series of random events that we react to?  Or is there a grand design—a unifying thread that links moments to days to decades—with an intended purpose, a reason for us to be here? I’ve usually found myself too occupied going from event to event to even think about it. I’ve always tried to have some good come of life’s trials and tribulations—not just picking myself up and coping, but helping others along the way: basically, “making lemons into lemonade.” I thought I had perfected this to a fine art, even attaining some “wisdom of age.” It seemed to be a fulfilling philosophy, giving shape and reason to all I had encountered in my many years on earth. That is, until March 3, 2008. But I had better start from the beginning, since any talk about a grand design is all in the details, anyway. 

I was born with normal hearing, which enabled me to develop normal speech and socialization skills. It wasn’t until my late teens that my hearing began to slip. I got through college and started my job as a computer programmer without much problem. But by age twenty-three, I had to get my fi rst hearing aid. My hearing continued to decline slowly, going through mild, moderate, severe, and profound levels of loss over the next twenty-five years. There was never any reason given for this degenerative loss, but it was a devastating experience. I had to continually keep up with new hearing aids, assistive listening equipment, and lipreading skills just to function during this depressing and chaotic downward spiral. 

My personal philosophy to make the most of whatever situation I found myself in resulted in my becoming an ardent advocate for people with hearing loss. Because of my long, slow descent into deafness, I developed into quite an expert on coping strategies at every level. My advocacy work also encompassed getting assistive listening systems and captioning provided in public places—essential accommodations for people with hearing loss, myself included. 

I eventually lost virtually all of my hearing, finally confronting that word: deaf. Hearing aids were of no use to me any longer. It was then that I opted to get a cochlear implant (CI). Cochlear implants use electrodes threaded into the cochlea, an internal computer chip, and an external computer processor to bypass the damaged portion of the cochlea and stimulate the auditory nerve directly, allowing sound to reach the brain. There should be no doubt in anyone’s mind that cochlear implants are a modern miracle, enabling the deaf to hear. 

I was no pioneer when I got my CI in 1997, but so few people knew about what CIs could do that I set about educating others—professionals and people with hearing loss—about the miracle of this technology. I chronicled the first year with my CI, which became the basis for my book, Hear Again: Back to Life with a Cochlear Implant. With that book, I achieved my goal of helping others by relating my own experiences and advice. I was particularly touched by the heartfelt expressions of thanks I received from people who benefitted from this information. I thought that as more people got CIs, the world would embrace this technology and realize that true miracles are still possible here on earth. I was wrong. 

I had my CI for over ten years, upgrading the external hardware and software as much as possible as the technology improved. Even though many more children and adults were getting them, the mainstream population, including doctors who were not ear specialists, still had no idea what CIs were all about. I would invariably hold a normal conversation with a hearing person, telling them that I was totally deaf and hearing them with my CI, and they would ask me, “And does that device help you?” How could they not be aware of what it means to be deaf and the enormity of this miracle? It just didn’t make any sense! 

I continued to help people through my advocacy and outreach efforts, and I came to believe that was my mission in life—just as others have career goals. I was certainly comfortable with the idea. When I would plaintively ask, “Why me?” the answer was always, “Why not?” I could even grasp the bigger picture of having to endure twenty-five years of degenerative hearing loss before being “rescued” by my CI. I accepted that as the necessary on-the-job training for my life’s work.

I was in no rush to “go bilateral,” though, getting another CI in my other ear. I was functioning rather well, I thought, and I had reacted so poorly to the anesthesia of my CI surgery that I didn’t want to endure that again. I was content to be a one-sided user of ten-year-old CI technology, no matter what the shortcomings. 

Everything about my life that I’ve described so far seemed to be driven by my responses to everyday events. Some things were fortuitous, some not, but the direction was always clear—make the most of what life dished out. But now I’m in a quandary about how to describe the events that transformed my life. In one year, I went from being a user of ten-year-old CI technology in one ear to a person with state-of-the art CI technology in both ears. In the process, I also produced a chronicle documenting this metamorphosis, which is contained in these pages. For all this to happen, however, my first implant had to stop working, I had to have it surgically replaced, and then have yet another surgery to implant the other ear. I also needed a support network to help carry me through this unexpected odyssey. How these events unfolded, and the circumstances surrounding them, were often ironic, too perfect, coincidental, or impeccably timed. Incredibly, often “things happened” that served to soften the stresses and rigors of this transition. How else to explain why my old CI stopped working at a CI support group meeting or how I learned the day before my surgery that I could have a trained hearing loss specialist actually hold my hand in the operating room? Chance?

For some people, the words too perfect or coincidental indicate some degree of religious faith or divine intervention. For others who don’t have these beliefs, they would be construed just as described and nothing more. Personally, I do sense a grand design—something beyond individual events or occurrences.

I’m reminded of the note cards I won as a door prize at an event at my temple the very first year I had my CI. Pictured on the front was a nautilus shell, which is shaped like a cochlea, with the inscription Listen Closely. I had always thought those cards were a little “too perfect,” and I’ve pondered their significance ever since. 

It does seem that these life-changing events are part of some elaborate plan. Taking a broad perspective, it seems that with a single ten-year-old CI in one ear, I had outlived my usefulness to counsel others on current CI technology and practices. This was remarkably similar to my situation in 1997, when my first CI came along just as my hearing reached a level that was so poor I could no longer function. In both cases, state-of-the-art technology enabled me to continue my advocacy work. The timing, once again, was exactly right, with a curious convergence of circumstances. My medical insurance company had just started covering bilateral CIs in the past year. The ten-year warranty on my CI had just expired, so even though most CIs last far longer than that, it wouldn’t be considered a “premature failure.”  Most of the shortcomings of my first CI—noise, distance, music—are now addressed by the latest technology, and having CIs in both ears would mitigate the limitations of listening with one ear alone. And there’s no ignoring the fact that my first book, while still useful in many respects, is lacking in current information. 

But there’s also that unfinished business of finally recognizing CIs as the miracle they are. A ten-year-old device in one ear that enables the deaf to hear is still a miracle, but it’s the latest information about the benefi ts of bilateral CIs—and how their interaction with the brain brings hearing even closer to normal—that is the miracle that needs to be broadcast now. And what can deliver that message? It does seem that this book is destined for the task. 

Whether everyone would agree that there is some grand design at play here is not really my concern. Reflecting on my forty-year odyssey with hearing loss, I realize now that there were events and responses that clearly shaped my future. In the span of a year, however, the circumstances have been unmistakable. The opportunities and problems presented to me practically dared me to make the most of them, along with enigmatic signposts that were ironic, too perfect, or coincidental. Whether this indicates some sort of divine intervention, or just chance, I will leave for you to decide. 

Whatever your beliefs, you cannot truly appreciate the enormity of enabling the deaf to hear without fully understanding the impact of deafness on daily living. On the following pages, you will walk in my shoes. For those with hearing loss, and parents of children with hearing loss, I hope you will benefi t from my adventures using new technology and hearing with two ears. For those with normal hearing, I hope you’ll envision yourself in my world, so you can finally grasp—with appropriate awe—exactly why a device that enables the deaf to hear is truly a miracle of Biblical proportions.

Listen closely . . .

Table of Contents

Preface 11

Prologue 13

Laying the Foundation

Phase 1 From Normal to Deaf in Twenty-five Years 21

Phase 2 Cochlear Implants-Surgery and Activation 27

Phase 3 Capabilities and Limitations 31

Transformation

Phase 1 Twenty-four Days of Silence 37

March 14, 2008: What I've Learned So Far-Five Days without Sound 41

March 18, 2008: What I've Learned So Far-Nine Days without Sound 43

March 21, 2008: Pre-Op Testing 46

March 23, 2008: The Secrets of the Broken CI World 48

March 26, 2008: Adventures and Exhaustion 51

March 27, 2008: Day Before Surgery 52

Phase 2 Replacing the Cochlear Implant 55

April 2, 2008: Activation Day-I Can Hear Again! 56

April 4, 2008: Reaping with Joy-The Wedding 58

April 10, 2008: From Silence to Sound-One Week 59

April 12, 2008: Compare and Contrast 61

April 28, 2008: Some New Tricks 62

May 18, 2008: Doing "Better"-Gold, Silver, Bronze 63

May 20, 2008: Moving Toward Bilateral 65

May 31, 2008: Patience and Piano 66

June 8, 2008: TV as Therapy 67

June 12, 2008: B and B and Yosemite 69

July 6, 2008: Three-month Real-life Evaluation 73

July 10, 2008: Official Three-month CI and Bilateral Evaluation 75

July 20, 2008: Wake-up Calls 78

July 26, 2008: The Persistence of Memory 81

August 4, 2008: The Ultimate Computer 83

August 14, 2008: Behaving Myself 84

August 24, 2008: Arts and Crafts 86

August 25, 2008: The Sand and the Sea 88

Phase 3 Bilateral Cochlear Implants 91

August 31, 2008: Thinking Bilateral 91

September 7, 2008: Out of the Comfort Zone 93

September 16, 2008: Arlene's Electrifying Bilateral Cochlear Implant Surgery Episode 94

September 18, 2008: Bilaterally Enabled 98

October 1, 2008: Waiting 100

October 2, 2008: Bilateral Activation! 102

October 4, 2008: Two Ears/Two Days 106

October 7, 2008: Stereo 110

October 10, 2008: Days of Awe 113

October 17, 2008: Finding Happiness 116

October 23, 2008: Revelations 118

October 26, 2008: Better in Noise 120

October 31, 2008: Playing for Real 122

November 25, 2008: Practice and Progress 123

November 29, 2008: The First Thanksgiving 126

December 7, 2008: Intermediate Level 129

December 11, 2008: Sound Decisions 131

December 22, 2008: Small Surprises 134

January 3, 2009: Matched Marvels 137

January 11, 2009: One Good Turn 139

January 16, 2009: Orientation 143

January 19, 2009: Born Yesterday 145

February 1, 2009: The Sand and the Sea Reprise 148

February 16, 2009: The Visit 151

February 23, 2009: Directionality Redux 156

March 3, 2009: Hidden Agendas 159

April 4, 2009: Tears of Joy 161

April 26, 2009: Lasting Impressions 163

Epilogue 167

How a Cochlear Implant Works 169

Acknowledgements 171

Index 173