This story is an excerpt from a new book about the cochlear implant technology titled Bridge to Sound with a 'Bionic' Ear. This book was recently cited as a reader reference on a segment of the Discovery Channel's "Assignment Discovery" series titled "A Sense for Technology" on Sept. 19th, 2003. The following story is one of the 80 essays featured in this book whose time has come as more and more people turn to cochlear implants to hear within their families, their jobs, and their communities. This timely book includes other helpful information such as hearing loss statistics, what an implant is and how it works, including criteria for becoming a candidate, the evaluation process, surgery and beyond. It includes reprints of the latest medical studies from John Hopkins University, the University of Minnesota, and the University of Michigan. Professional perspectives from surgeons, audiologists, government agencies and other service providers are also included as well as a list of organizations and websites for research and support. In a nutshell this publication is a one-stop-shop for those seeking the latest information about cochlear implants and how they can help people with a profound hearing loss.
My life was turned upside down and inside out in the space of one afternoon in April of 1995. That day my remaining hearing deserted me and I was left profoundly deaf. (I had grown up with a hearing loss since childhood and pretty much operated on "cruise control" with a hearing aid throughout my life). Up until that day I functioned well in the hearing world with my hearing aid, employed in sales and management.
When my life changed so abruptly, I was an outside sales representative for Pitney Bowes. I was returning to my car after a lunch appointment, when all of a sudden it seemed like the volume just cut out on my hearing aid with a lot of static. I thought my hearing aid had malfunctioned so I went to visit my hearing aid center for another aid. They gave me several 'loaner' aids to try, but I couldn't hear with them either, even a new hearing aid which didn't seem to work. Suddenly it dawned on me that the problem was my ear! I remember going through the motions in a state of fear, shock and dismay.
I consulted with my Ear, Nose, and Throat doctor right away. I was in acute turmoil, emotionally and physically. My doctor was very sympathetic and a real lifeline to me during this extremely rough patch. He prescribed a course of antibiotics, along with prednisone to try and correct the loss that had robbed me of my remaining hearing.
After that failed to produce the desired result over the next six weeks, my doctor told me "I can restore your hearing with a cochlear implant, Cynthia." A bold statement to make, but he was that confident that it would work for me. But I, doubting Thomas that I was, had serious doubts as to whether an implant could really do the trick. It sounded like science fiction to me. I struggled with hope, fear, and doubt that this technology could really help me. I consulted with other doctors for a second and third opinion. It was reinforced that I had suffered an irreversible deafness and that a cochlear implant was my only option if I wanted to regain any hearing ever again.
During my "deaf" period (8 months) I had to make many adjustments, so I truly have an insider's view of what it's like to be deaf. For instance, I had always been so independent to survive/thrive. Now I had to learn interdependence. In other words, I had to accept help from others whether I wanted it or not, a hard lesson for me. I could not hear making my ability to communicate severely impaired. My lifesaver was my skill at lip reading, which served me well; as without auditory information I was totally dependent on lip reading and writing notes.
This was not only tough for me, but for those around me. I was a recent single mom with a four-year old son. This was a very tough time for both of us as we struggled to communicate with each other. My parents suffered as well; seeing their only child experience the helplessness of sudden deafness and its impact. It was a terrible strain. Daily life was very stressful at times without the hearing we have a tendency to take for granted. I couldn't hear the doorbell, the phone, music, voices, smoke detectors, cars etc. the list goes on and on.
I was truly in a prison of silence and it isolated me from people. I suffered depression and grieved for my loss of hearing. I remember trying to 'grasp' and retain the precious sound of my son's sweet voice as my hearing faltered even more, to nothing. It was a nightmare from which I thought I would never awake. After the initial shock wore off, I had to get a grip. I went through a period of trying to adapt to deafness and seeing how it went, but it was hard - much harder than I would have ever thought. Therefore while I tried to stay open-minded about it, the memories were too strong and I knew I had to get my life back.
I made the decision to receive the Clarion cochlear implant; at that point I reasoned that anything was better than nothing, as it would just give me more information to work with. (Something people with hearing loss do is put pieces of information together, like what we heard, or thought we heard, we lip read and other cues to formulate, in seconds, our response). My expectations at that point were to accept whatever benefit I would receive and maximize it to my best advantage.
My insurance company finally gave the authorization for my implant after much ado. The person responsible for making my life-changing operation decision was not well informed about cochlear implants and her attitude was "This device makes a deaf person hear? Yea right!" A common assumption in many people's minds I'm afraid. However, she was convinced of its viability after working with an insurance reimbursement specialist at Advanced Bionics. During a conversation on the phone when the caseworker expressed her doubts about the effectiveness of the cochlear implant, Joann dropped the bomb. "Guess what, I'm deaf. I'm talking to you on the phone and I wear the implant." That did it, and my operation was authorized and covered 100% by the insurance company.
I chose to have my procedure performed at the University of California in San Francisco by Dr. Robert Schindler, whom I had seen when I was twelve years old. The surgery on Dec. 5th, 1995 was pretty typical, nothing out of the ordinary. I had some apprehension, which is normal. I didn't have any problems, other than being a little weak for a few days. Everything went according to plan and I was released in less than 24 hours with no complications.
The day I actually heard with my new "bionic" ear was on Jan. 5th 1996, a month after the operation, when I was given the external device that would enable me to hear sound. When the mapping session (programming of the electrodes in my implant) was complete, came the moment of truth, would this work? Then my audiologist flipped a switch on my speech processor and I was on! Back in the hearing world again! Just like that! It was a miracle! Liberty! I could hear again and speech sounded natural to me.
I am ecstatic to be able to hear again and released from the isolation imposed by my deafness. Now I can really appreciate all that life has to offer, even more so because of the hard road I had to travel. My memory of that day will always be with me. I felt like a prisoner that was given her freedom. It was such a profound experience. After leaving the University of California San Francisco that day, my mother and I walked in downtown San Francisco and celebrated my rebirth as a hearing person. We encountered a local street band on one of the sidewalks and we began to dance in our excitement! It was truly a day to remember.
In retrospect I would like to add a few things. I've worn my Clarion cochlear implant for about 7 years. Although I can use the conventional telephone fluently now with anyone (as long as they speak English!), I had to work to get to that point. It was not instantaneous. The day my implant was activated, I tried and failed to comprehend many words on the telephone. But I just kept trying. I practiced with voice messages and friends. I had several re-mappings with my audiologist (part of the program as a map will change as your ear becomes accustomed to sound). Within a month I was able to use the phone without adaptive equipment. (I would just hold the phone up to my ear). At that point I would still have to say "what" on more than one occasion! Now it's not even an issue anymore, and I'm even able to use a cell phone with ease.
Since regaining my hearing I've moved in new directions. Before this ordeal I had drifted in and out of various careers in an attempt to find my purpose and passion in meaningful work. I felt that there was something 'missing,' that I was destined to do something else. Since receiving my new lease on life, I've compiled a book about the cochlear implant technology that offers new hope and opportunities for people with profound hearing loss titled Bridge to Sound with a 'Bionic' Ear. This book is a one-stop-shop resource with information from many sources including studies from leading Universities, Physicians, and Audiologists, etc. It contains 80 first-hand testimonials from people of all ages and experiences who have benefited from a cochlear implant, which details their journey of hearing loss, pre and post implant. This publication can be ordered on my website at www.HearThisOrg.com or at Barnes's & Noble or at your local bookstore. Last but not least, I would like to take this opportunity to thank all of those of who have spearheaded and supported the cochlear implant technology, for without them we would not have the hearing we enjoy today.
© 2003 Cynthia Ann Farley (reprinted with permission)