a.b.c. (Advocates for Better Communication)
HEAR AGAIN - Back to Life with a Cochlear Implant
by Arlene Romoff
The compelling, true story of how a late deafened adult regained communication with the "hearing" world
Arlene Romoff began losing her hearing during her college years. It continued to decline gradually until, almost thirty years later, she was left profoundly deaf. When hearing aids no longer worked for her, she elected to get a cochlear implant, a computerized device that stimulates the auditory nerve directly.
For the next year, Arlene shared her experiences, via email, with family, friends and colleagues. These "postings" are brought together in "HEAR AGAIN", a fascinating chronicle of what life was like without hearing, and her return to the world of sound with this miraculous device.
Arlene is active in advocacy efforts for deaf and hard of hearing people, serving on the committees and boards of several organizations. She resides in northern New Jersey with her husband, Ira, a bank executive, and is the mother of two adult children, Emily and Michael.
HEAR AGAIN can be ordered from the League for $15.95 plus shipping ($4.50). Send a check or money order for $20.45 to:
The League for the Hard of Hearing
Publications Dept.
50 Broadway
6th Floor
New York, NY 10004
To order or read reviews through Amazon.com, click here.
ENDORSEMENTS OF
"HEAR AGAIN - Back to Life with a Cochlear Implant"
This is a wonderful book for audiologists, audiology students and for people interested in hearing loss and cochlear implants. Ms. Romoff is able to describe the issues related to not hearing and to learning to hear again. It is a wonderfully inspirational story that should be a must for every audiologist and physician working with families affected by hearing loss.
Jane R. Madell, PhDDirector, Hearing and Learning Center
Beth Israel Medical Center and
Professor, Clinical Otolaryngology
Albert Einstein College of Medicine
Arlene Romoff's book "HEAR AGAIN" is a valuable asset to the library of professionals, students, hearing-impaired individuals and all those who come in contact with hard-of-hearing people. The book provides essential information regarding the impact of severe hearing loss and subsequent cochlear implantation on the daily life, family and professional interactions of one cochlear implant recipient. The insights provided by the author will give the hearing-impaired individual (or a family member) a sense of belonging and being understood while providing clinicians and researchers with a better and more compassionate realizing of the feelings, trials and tribulations of the hearing-impaired population. Cochlear implant candidates and recipients will find many helpful hints related to the process as well as comfort and encouragement for the future.
Sincerely,Susan B. Waltzman, Ph.D.
Professor and Co-Director, NYU Cochlear Implant Center
Department of Otolaryngology
NYU School of Medicine
This book is a wonderfully warm and insightful description of the author's unique journey from deafness to hearing with a cochlear implant. It is realistic, personal, balanced, and then, when appropriate, soars with enthusiasm.
Paul Hammershlag, MDOtology - Neurotology
Facial Nerve Surgery
Otolaryngology - Head & Neck Surgery
Clinical Associate Professor, Otolaryngology
New York University School of Medicine
An excellent book not only for those with hearing loss, but also for friends, family, and professionals in the field.
Although no one could know exactly how it feels, Ms. Romoff allows us to come close through an inside glimpse of her personal thoughts, emotions, life changes, and strategies during the long process of losing and then regaining her hearing. This was crystallized both in her fascinating description of the precise moments when she knew her usable hearing was gone and in her later new-found invitation to re-navigate, relearn, and re-enter the hearing world.
Fran P. Prezant, M.Ed., CCCDirector, Research and Evaluation Center
As the director of an agency that provides mental health services to deaf and hard of hearing individuals, I meet individuals who have lost their hearing at a later age, and as a result, have withdrawn from the world and everyday life. People with hearing loss feel there is no one to relate to, who has shared their experience, and yet, are unlikely to meet anyone else with a hearing loss because they choose to withdraw from other people--it's a vicious cycle. Reading "HEAR AGAIN" is like making a new friend, because Arlene Romoff shares all her emotions with the reader, telling us what it's really like to experience hearing loss and then sound again, which is, after all, what we all want to know. I think this book is valuable for those with a hearing loss for that "me too" feeling and is a great resource for hearing professionals and students, to gain insight into the experience of sound, which is so taken for granted.
Carol Uckar, M.A.Director, ACCESS
Barnart Hospital, Paterson, NJ
As a leader of the worldwide research that developed the modern, multichannel cochlear implant, I was fascinated by the insight shown by Ms Romoff in her book, "HEAR AGAIN". As she detailed daily experiences following the implantation of her cochlear implant, she unknowingly provided clues as to the mechanisms that her nervous system used to adapt to the new auditory input in its attempt to improve her ability to hear. These clues are valuable to scientists and engineers who are trying to design newer cochlear implants with still better performance than is presently available.
F. Terry Hambrecht, M.D.Consultant to the National Institute on Deafness and other Communication Disorders
Former Director, Neural Prosthesis Program, National Institute of Neurological Disorders
and Stroke, National Institutes of Health
Arlene Romoff's "HEAR AGAIN" is an unusual work, unfurling the incredible process of a cochlear implant at work, gradually restoring hearing and communication to the author - after years of deafness.The almost day-to-day diary approach of the book is probably the best way for us to feel and understand the ups and downs, the apprehension, and the happiness of the author as she continually improves her listening skills and comprehension of what is said to her and other sounds of the world, including music and the telephone.
Arlene Romoff is a very intelligent and insightful person, thereby making it easier for us the readers to read, understand, and enjoy this exciting drama.
Jerry Reichstein, Ed.D.Professor
Hearing Impaired Program
School of Education
Tel Aviv University
Tel Aviv, Israel
"HEAR AGAIN" is an inspiring and personal account of the author's journey back from deafness after receiving a cochlear implant. In her miraculous story--Arlene Romoff-- skillfully educates the reader about adult onset hearing loss and answers many of the questions that parents, professionals and educators have about cochlear implants. This book is well written, easy to read and a timely resource. I highly recommend this book.
David C. Alexander, Ph.D.Reading the book "HEAR AGAIN" only a short time ago actually became a glimpse into my own future. Like Arlene, I also experienced a decades-long isolating, depressing descent into profound deafness, despite use of high-tech powerful hearing aids. My "future" became a reality a few months ago, when, enboldened by her book, I too, received an implant. Now, there is hope for people who experience profound deafness, and reading "HEAR AGAIN" is the first step towards being able to hear again with a cochlear implant. No matter the age of the reader, it is an inspiring book as much as for parents of deaf youngsters through late-deafened senior persons wanting to reconnect once again with their loved ones' voices.
This book should be read by all audiologist and professionals who work to rehabilitate those with hearing loss. The book "HEAR AGAIN" is an excellent gift to give to someone contemplating a cochlear implant.
Thank you for publishing this book and spreading the word about how to hear again!
Carol M. GranaldiCo-founder, Hearing Loss Association of NJ state association (formerly SHHH-NJ)
Member also: League for the Hard of Hearing,
Association of Late-Deafened Adults,
Alexander Graham Bell Association,
New Jersey Coalition on Women & Disabilities
REVIEWS OF
"HEAR AGAIN - Back to Life with a Cochlear Implant"
LIBRARY JOURNAL REVIEW - 2/15/02
This is a book about joy and the wonder of small things. More than a diary of Romoff's first-year experiences with her cochlear implant (CI), it is a record of her growing confidence as her hearing gradually improved after a 30-year decline into profound deafness. Compiled from her Internet postings, the book offers much for those contemplating a CI but also for anyone who enjoys graceful writing. Romoff draws the reader into a world of rediscovered delights: the ping of an elevator button, the jingle of keys, or the pleasures of social gatherings, music, and no-longer-silent nature walks. This book does not address the technical aspects of cochlear implants or the controversy over implants within the deaf community, but it does chronicle one person's yearlong odyssey from deafness to functional hearing. Purchase where interest warrants.
Ann Forister, Roseville P.L., CAThe following review, by Pat Chute, Ed.D. appeared in the publication, Volta Voices, Summer, 2000. Patricia M. Chute, Ed.D. is an associate professor at Mercy College in Dobbs Ferry, NY and is the director of research at the Children's Hearing Institute in New York, NY.
Book Review
by Pat Chute, Ed.D.
"HEAR AGAIN" is a year-long chronicle of Arlene Romoff's experiences using her Clarion cochlear implant. Romoff begins by describing in detail her initial descent into total deafness after years of being hard to hearing and ends her account with the triumph she felt a year later when she was reintegrated into the hearing world. Although previous books by adult cochlear implant users have outlined similar experiences, the difference presented in this book is Romoff's personal insight and her enthusiasm for life. One is impressed with the level of activity Romoff sustained despite being deaf - she never let it prevent her from trying to participate in life to its fullest. The author describes the differences she experienced in many of the same situations after being implanted. Peppered throughout these accounts are also her thoughts of life with and without sound, which make this book both informational and provoking.
Romoff cautions readers who are contemplating implantation that they can never assume the implant will provide similar success; however, she encourages individuals who are deaf to pursue this technology nonetheless.
Her in-depth descriptions are personal but poignant and often conclude with insights that bring those of us with normal hearing to greater realization and appreciation. The metamorphosis that takes place over the course of her first year of hearing is remarkable. In the beginning, she writes, she continually questioned the uncertainty of whether her hearing would be consistent and whether perhaps her performance would plateau. By the end of that first year, however, she had found new confidence and knowledge of her abilities.
The stories she relates are often funny and thought provoking. She recalls her experiences of using the telephone and the evolution of that process. She describes situations such as her first experience as a "backseat driver," of her struggles in movie theaters, of finally hearing her own name again or hearing the crunching of potato chips. Numerous other circumstances are recounted with great joy. After only 86 days of hearing with her implant, Romoff said she realized that she "owns this hearing" and that "this is my life." She realized that her hearing is not a "temporary gift."
At the end of the book, Romoff writes about how different her own behavior is because of the implant. She still recognizes, however, that her hearing is not normal and that she is still deaf: "The funny thing is that I tend to feel a bit sorry for hearing people, who take their normal hearing for granted. They'll never understand the special joy and wonder that I experience each and every day of being able to hear again."
I recommend "HEAR AGAIN" to individuals contemplating implant surgery, as well as to graduate and undergraduate students in training, teachers of the deaf, and speech and hearing professionals who have not yet had the opportunity to work in the implant field and understand its overwhelming process.
This review appeared in "Hearing Loss", the publication of Hearing Loss Association of America (formerly SHHH).
September/October 2000Review by Sandy Morgan
Arlene Romoff writes of a journey through one year beginning with the day she was hooked up t her cochlear implant external processor on December 1, 1997. The writing began as e-mail postings to her friends, family and associates for a few days to let them know of her progress. She felt an obligation to continue writing as she received comments from people who had similar hearing problems and knew little about cochlear implants. Her postings also went to an Internet bulletin board devoted to cochlear implant issues called the "CI Forum," which reaches people worldwide.
This quotation from early in the book gives the tone of the exuberance and humility of the author: "Bear in mind as you spend the next year with me, that I am a late-deafened adult. The way I function with my cochlear implant is directly related to my own hearing history. Since I once had normal hearing, my experience is different from those who have never heard. I also want to point out that this is no ordinary diary of daily events. We're talking miracles here, true miracles of biblical proportions - allowing the deaf to hear tends to make everyday complaints and nuisances seem trivial. This may account for my lack of anger or negative emotions. I mention this now because I may be faulted for sounding too happy, too joyful or painting too rosy a picture. The truth is that I am in absolute awe of being able to hear again. I don't think anyone can comprehend it, unless they've experienced it themselves, what it is like to return to a world of sound."
In deciding which ear to have implanted it is probable that any hearing in the implanted ear will be destroyed. A 'prom stem' test is administered to be certain that the auditory nerve in the implanted ear can be stimulated. Surgery for the internal component requires an overnight hospital stay with the external hookup made about a month later. This process was chronicled in the first five pages by the author.
We share each new hearing experience with the author and recall our own cooping strategies as she skillfully weaves in her past experiences. The "change" technique of giving a bill large enough to cover a purchase and waiting for change was no longer necessary when on Day 34 she was able to hear the cashier say the amount. In a situation all too common to many of us, she mentions how hard her brain had to work before - "lipreading, controlling conversation, figuring out what was going on, just to make casual small talk."
Each day brought new adventures in hearing - the radio, music, using the telephone, movies, theater, travel, social events, shopping, the beauty shop, a conference telephone call, and even Disney World.
At the end of several journal entries there are responses, some commenting on their own experiences and others encouraged by the daily revelations. Following the last entry is an illustration of a cochlear implant with all components labeled and explained. The index is a valuable resource for specific topics both technical and practical.
This is joyous book in the celebration of the experiences of one woman, who comments, "I no longer walk through the day hoping no one will speak to me. I'm a part of the world around me, not isolated in my silence...." this book by Arlene Romoff is one of inspiration and information and may be one of the best books available for cochlear implant recipients.
Review of "HEAR AGAIN"
Reviewed by Jerome D. Schein, Ph.D.
Is a book recounting a lay person's experiences with a cochlear implant (CI) appropriate for review in a professional journal? This book is not an objective report, and readers cannot expect to generalize from the author's experiences. She lost her hearing progressively over a 30-year period beginning at age 20; she is highly intelligent, judging by her writing; she has a supportive husband, and she has had excellent surgical and rehabilitation teams - conditions not easily replicated. Still, I recommend it, because the author provides a day-to-day account of her progress, something rare in the CI literature.
The author presents her story in diary form, from the first through the 369th post-surgical day. Readers can follow the subtle changes as her brain adapts to new stimuli. She recounts her disappointments and delights in lay terms. For example, when her hearing fades while at the theatre, she wonders if it is her CI or the theatre's sound-projection system. Her audiologist advises her she was probably "getting tired of listening" (pp. 33 and 40). "Tired of listening" conveys the idea as well as "auditory fatigue" or "over-stimulation of nVIII". The author speaks directly to people who are hard of hearing. The book includes Email responses from interested correspondents to her almost daily reporting on the Internet of her post-CI experiences.
The author adds to her account by contrasting her pre-CI days with her present functioning. Not only does she narrate large and small problems, but also how she used to deal with them and how she now experiments to overcome them: she chooses clothes that hide the CI's processor and wires and she recites serious and amusing communication difficulties at stores, theatres, cocktail parties, and other quotidian circumstances. In each situation, she displays her ingenuity and reveals her solutions in pre- and post-CI anecdotes - additional material of value to those with either professional or personal involvement with hearing loss.
"HEAR AGAIN" is not an uninhibited, commercial panegyric for CI. It is, instead, an intimate glance into the psychological and physiological processes of converting electrical impulses into hearing analogs. While Ms. Romoff testifies to what she calls unequivocally a "miracle," she conscientiously warns that others may not obtain her results: "I don't want to discourage anyone from pursuing a cochlear implant for themselves; I just want to point out that the adaptation process is unique to each person"; to which she adds, "We're talking miracles here, true miracles of biblical proportions - allowing the deaf to hear" (p.21). Her candor and wit provide additional reasons for practitioners to feel comfortable in handing this book to patients who may be deciding for or against a CI.
For professionals, this detailed account should stimulate research and engineering that still needs doing. And like a well-done case study, it will alert them to the psychological aspects of CI, aspects vital to the successful implementation of the CI.
This review appeared in WE magazine - an upscale publication geared to people with disabilities:
We Magazine, July/August 2000
By now many have heard of cochlear implants, an electronic device that restores some hearing for those with severe to profound hearing losses. But even those within the hear-of-hearing community are not always sure how it enhances the lives of those who get one. Enter Arlene Romoff, who gradually lost her hearing once she was an adult, who sent an e-mail to her friends, family and colleagues explaining her decision to get an implant. Surprised by the unanimous positive responses (an audiologist replied with a simple request, "more"), Romoff spent the next year chronicling, via e-mail, her life without hearing and her gradual return to the world of sound.
Straightforward, moving, witty and honest, she recounts how music, business meetings, conferences, airplanes, dinner parties, baseball games, movies and even root canals have become easier and more pleasant experiences. Top of the list: "Arlene's supermarket Moments," tales of common errands that had become complicated chores but slowly became no big deal.
This review appeared in Hearing Health magazine:
Hearing Health, July/August 2000The author's hearing began slipping away during her college years, a decline that continued gradually for almost 30 years until she was profoundly deaf. When hearing aids no longer worked for her, Romoff elected to get a cochlear implant. For the next year, she shared her experiences, via email, with family, friends and colleagues. These postings are brought together in a compelling story of regaining communication with the "hearing" world which offers an example of the power of hope and encouragement. Readers have an opportunity to experience the miracle of faith merging with technology.
More Endorsements for "Hear Again"
"So many people could benefit from your experience
and have a better understanding of not only the
cochlear implant (CI), but also the psychosocial
aspects of hearing loss, so greatly misunderstood by
the public, both with and without hearing loss."
Pat Tomlinson (Vocational Rehabilitation Counselor, Retired)
"Your chronicles will enrich the lives of many who
read about your CI exploits!"
Richard Herring (Director, NJ Division of the Deaf and
Hard of Hearing)
"I have learned more from you than any other single
person what it is like to lose one's hearing and then
regain some of it via an implant."
Mardie Younglof (CI user and Associate Editor, CONTACT,
the publication of Cochlear Implant Club International)
"I certainly don't take my hearing for granted
anymore and I have an even deeper sensitivity to
people with hearing losses in social situations. My
mother completely withdrew from parties and friends
later in life when she lost her hearing. I understand
that so much better now."
Lisa Carling (Director, Theatre Development Fund,
Theatre Access Project)
"It means so much to me to read your first-hand
accounts with the implant. It gives me so much hope.
As my hearing continues to get progressively worse
(gradually), I know the implant is a very viable
option. Thank you for taking the time to share all
of this with us."
Carolyn Ginsburg (hard of hearing friend)
"Your writing catches and shares all the emotions
and poignancy, the pains and joys that hard of
hearing people experience. You do it extremely well."
Rudy Vener (deaf/blind CI user)
