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The Gift: Cochlear Implant Brings A Year of Change

2004; American Speech–Language–Hearing Association; Volume: 9; Issue: 3 Linguagem: Inglês

10.1044/leader.ftr5.09032004.6

1085-9586

Susan Boswell,

Australian Indigenous Culture and History

You have accessThe ASHA LeaderFeature1 Feb 2004The Gift: Cochlear Implant Brings A Year of Change Susan Boswell Susan Boswell Google Scholar More articles by this author https://doi.org/10.1044/leader.FTR5.09032004.6 SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In After an interminable wait in the surgical holding area, the anesthesiologist came and signed the word “now.” I stared at him. As we began to walk toward the operating room, I glanced back at my husband one last time. The anesthesiologist let me watch briefly, and then we continued. I was finally ready to go forward. Getting a cochlear implant was both difficult—and gratifying. In more than three years, I’d gone through parts of the candidacy process in as many times, and this Dec. 11 surgery was the second I’d scheduled. It means a lot to me to have the implant, and not a day goes by when I don’t enjoy it. I’ve discovered that toaster ovens make a noise when they’re done toasting and that there’s more than one kind of bird chirping outside, and I always stop and listen to the soda fizz. The decision to get a cochlear implant is never made lightly. As part of the decision-making and candidacy process, adults must decide that an implant is the right option for them, determine when to take advantage of an advancing technology, decide which ear to implant, and pick a device. All of these decisions are irreversible. There are also concerns about the surgery and the outcome, with the understanding that it is difficult to predict the outcome prior to surgery. Those who are culturally Deaf face a mixed acceptance of cochlear implants by the Deaf community, although in recent years, more individuals who are culturally Deaf are choosing cochlear implantation. As a journalist, I wrote my first story about cochlear implants for my university newspaper, shortly after the technology was approved. When I came to ASHA, I saw how much the technology—and candidacy criteria—changed in more than a decade. To my surprise, I qualified in 1999, but ultimately, I told the implant center that I would wait until ear-level speech processors became more widely available. A Deafinite Decision But the larger issue was one that I couldn’t talk about with the hearing people around me, and couldn’t resolve: Why did I want this? I was born with a mild hearing loss in the better ear and a severe hearing loss in the other. Over the course of several weeks before entering junior high school, I lost all aidable hearing in my better ear, and the hearing in the other ear sunk lower. Although I primarily used spoken language and others saw me as hard of hearing, along the way I came to identify as a deaf person and learned basic sign language. I spent many years coming to terms with being deaf and was content. Somehow, I felt that wanting an implant meant that I felt bad about myself as a deaf person. Why wasn’t it acceptable to be deaf the way I am? But at the same time, I was frustrated with communication demands. The implant was an option, and I wanted the opportunity to try to use the technology in this life. Finally, I reconciled two incongruent concepts-I could be happy with myself as a deaf person and also want to hear better. Second Time Around I started the candidacy process for the second time the day after an ear-level processor came on the market. Now, 28 flavors of emotion replaced 28 issues of concern. I was alternately excited, scared, at peace with my decision, unsure, and incessantly worried. When my audiologist wanted the final decision on the device, I began to have doubts, which grew larger as the surgery drew closer. Did I make the right choice? Have I really researched this enough? Over the years, I’d read every book, journal article, and Web site that I could put my hands on, attended seminars, and participated in several e-mail discussion groups. But all the research wasn’t leading to a decision. There were no clear-cut answers. When I still couldn’t decide on a device, I canceled a week before the April 3, 2002, surgery. Crossing the Rubicon I didn’t think I could put myself through the candidacy process a third time, but six months later, I had my heart set on a December surgery. The implant center did something that was simple, but effective. They gave me the dates for the surgery—and the activation. Seeing the activation dates on paper helped me to focus on having an implant. This time, maybe it would actually happen. With the stress of the impending surgery and the decisions that needed to be made, once again I began to ruminate in the supermarket aisles, unable to pick which cereal I wanted to eat in the next week, let alone the device that I would have for the foreseeable future. This time, I wrote down all of the steps that I could take to make the candidacy process easier, and I told few people that I was going through the process. As an investigative journalist, my husband, Timothy Maier, teamed up in researching the device. Although the final decision was entirely mine, this time I didn’t feel alone in making an overwhelming and irreversible decision, a dynamic I’ve noticed among other couples. I questioned the device decision right up until I walked into the operating room, but somehow, I managed to stay with my choice. The only easy decision was which ear to implant, typically a difficult decision for many candidates. The implant center was adamant about implanting the worse ear, in which I could only detect the presence of sound through vibrations with a hearing aid, although I hadn’t worn one for many years. I had nothing to lose. But did I have anything to gain? Despite the assurance of many clinicians that I’d do “well” and positive results from a promontory stimulation test, I had little faith that an implant would provide much benefit beyond what I could already hear with a hearing aid in the opposite ear. I set my sights on the future by writing down all of my communication goals for the implant. Another Beginning Six weeks after the surgery, the implant was activated on Jan. 22, 2003. Far from being the emotional experience I imagined, the activation was extremely underwhelming. But I wasn’t disappointed. I hoped that I would be able to hear sound, rather than feel a sensation, as some people with prelingual or long-term deafness do, and was gratified when I could. When people spoke, they emitted robotic beeps that reminded me of the R2-D2 or C-3PO robots in the “Star Wars” movies. Because I had been deaf for more than 25 years, I was prepared for a long, protracted adaptation process, but my biggest surprise was that it was easier than expected. As I acclimated to sounds heard electrically, people’s voices took on a more human quality within a week, although I had no ability to understand speech without speechreading at first. Unfamiliar sounds-which were many-were perceived as a high-pitched ring, which occasionally became unrelenting. It sounded like a bad case of tinnitus, which had me worried. But the ringing slowly dissipated as I began to identify sounds. A week later, the ringing occurred when people spoke, and I realized what this sound was at the end of words. After the third activation, voices sounded similar to the way they had with a hearing aid. Women’s voices once again had a feminine quality, although my kids’ voices had a raspy, bleary quality for many months. Time and experimenting with variations on a speech-processing strategy took care of my sound quality issues within the first six months. The question I am asked most often relates to benefit with the implant: “Is this as good as it gets?” Clinical trial results show that the largest changes in mean performance occur between the activation and the one- and three-month follow-up sessions, with incremental improvements thereafter. People who are elderly or have a long duration of deafness show improvement in speech understanding through 18 months to two years. Aural rehabilitation and practice also can increase the subjective and measured benefit over the course of several years after implantation. The Spousal Factor My husband was my biggest supporter. He made a big deal out of accomplishments with the implant, which boosted my confidence and encouraged me whenever I came to a low point, reminding me of how far I’d come and suggesting that, in time, I’d reach my goals. At first, my husband avoided calling me on the phone, but he was thrilled when we had a simple phone conversation two weeks after activation. When I commented that boiling water made a popping noise, he suggested we get a breakfast cereal that goes snap, crackle, and pop. After I began to understand the radio for the first time, my husband suggested radio stations, and we talked about why stations are easier or more difficult to understand. The whole family helped with sound identification. I felt as though I’d been given a gift and didn’t know what to make of it. And then I knew—the gift was a greater connection to people. My favorite moments were those in which my new hearing abilities were part of a shared experience, such as the time my husband and I listened to political commentary on the radio—and then got into a spirited debate. Aural rehabilitation gave me practice in listening to some of the speech sounds that I have difficulty with, strategies for modulating the volume of my speech, and practice in using the phone. Mary encouraged me to go to the library and get a stack of audiobooks to try, suggesting that if one didn’t work out, to go on to the next. With some trepidation, I popped one of four tapes into my tape deck. Having the book read to me, rather than reading the printed text, was a unique experience that reminded me of my teachers who read to me in grade school when I was hard of hearing. I was always begging them to read. Whenever I finish one book, I go on to the next. But getting an implant involved more than hearing better and meant changes for others-and myself. The roles within my family began to change. My husband was dismissed from his role as the occasional interpreter at the dinner table. He also was accustomed to communicating with restaurant personnel. To his surprise, I now wanted to order food myself. Slowly, my husband and kids realized when to back off and let me exercise the independence that the implant gave me in communicating with others, such as the grocery store cashier or the waitress, and when to intercede when I had difficulty. Later in the year, when my husband and I went to a party, he was my partner and not tasked with letting me know the topic of conversation so I could participate. It was amusing to watch other people try to change their habits, but less amusing when I realized that I needed to change my own. “Oh, I don’t need to talk to you so loud,” my neighbor said sheepishly. My husband realized that after years of marriage, he no longer needed to tap my arm to get my attention. He didn’t need to carefully position himself in relation to the light source while talking to me, or diligently avoid background noise. He also no longer needed to be near me or look at me when talking, or even in the same room. My kids enjoyed talking to me with less repeats, but also got away with less, as I could now hear them say nasty things to each other. For me, having an implant was like losing weight and then trying to maintain it. If I really wanted to be more independent, I needed to continue doing things for myself instead of falling back into old habits. Roller Coaster Ride While hearing better may seem like a completely happy experience, for me, having an implant was bittersweet. While I was elated with what I could hear, I also felt sad at what I’d missed. I wished the current technology was available when I was a preteen. If I had been implanted shortly after my sudden hearing loss, I felt that my results would be even better and my life would have been much different. When I visited my family, I was delighted to be able to understand my sister’s toddler, even when he was in the back seat of the car, but I was sad that I hadn’t been able to hear my own children as well at that age. My children are now 10 and 13 years old and, for the first time, I’m beginning to have a conversation with them in the car—not just at the stoplights or parking lot. As I moved closer to the one-year mark, I stood on the threshold of the door to the basement where my kid was playing with his friends—and on the threshold of overhearing occasional bits of conversation as my kids played. My speech understanding scores showed that the implant was a success, but the numbers didn’t matter to me and only served as reassurance. The real success was that I was happy with the implant. I’d been content as a deaf person, but now I also enjoyed the opportunity to be hard of hearing. For years I’d watched my kids play, but now I had the chance to understand what they talked about. “Where’s the coin?” my youngest son asked in the middle of a “Yu-Gi-Oh!” card game downstairs, as they prepared for a coin toss. “I draw heads,” one friend said. “I draw tails,” another friend responded. Cochlear Implants: An Evolving Journey by Patricia M. Chute As an audiologist involved in the field of cochlear implants for more than 25 years, I am constantly amazed at the courage and persistence of children and adults who use these devices. When a deaf adult, or a parent of a deaf child, opts to select this treatment alternative, they embark upon a lifelong journey that continually evolves. The initial decision to seek an implant is often complicated by factors that are both intrinsic and extrinsic to the individual. Intrinsic factors are related to audiological issues, physiological issues, and personal choice. Issues within the family, the social community, and the health care system are extrinsic factors. Decision-making is most effective when the person making the decision is maximally informed. Information should be gleaned from a variety of sources and should never come from a single one. Single-source information is attractive because it is easier to absorb, rarely includes conflicting information, and may be based on a personal relationship with the individual providing the information. The danger in single-source information is cloaked in personal bias, limited exposure, and a narrowed breadth of experience. Therefore, it behooves adults and parents of children seeking implants to access as many different types of information resources as possible. Individuals who seek an implant should access the written media as well as speak with professionals, implant recipients, and families of implant users. It is also helpful to contact the individual manufacturers. However, consumers must always be aware of the fact that this information is constructed to demonstrate a very unilateral view. Informed implant recipients should never feel as if they were passive receivers of the cochlear implant, but should consider themselves active participants in the entire process. Susan’s story underscores the importance of all the people, places, and things that she accessed to ensure that when she made the decision to obtain an implant, she was completely ready for it. The amount of information that each of us requires to make a decision-and feel comfortable with it-varies as much as our individual personalities. Susan relied upon resources that she knew and then used those resources to identify new ones. As she notes, it took several evaluation sessions before she felt comfortable with her final decision to obtain an implant. No implant candidate should ever succumb to the pressures that might be placed upon them by well-meaning professionals, friends, or other implant users. It is only when the individual is ready that he/she should proceed. The process of information gathering does not end at the time of the surgery. In fact, the amount of information that the implant recipient requires after implantation is even greater. Parents of children with implants and adult implant users should continue to educate themselves about changes in technology and everyday maintenance by attending local seminars and workshops, joining online chat groups, and accessing organizations such as the Alexander Graham Bell Association for the Deaf and Hard of Hearing and Self Help for Hard of Hearing People. Patricia Chute is an associate professor at Mercy College in Dobbs Ferry, NY. She has been involved in the cochlear implant field since the late 1970s and has written two books and more than 40 published articles. Contact her by e-mail at [email protected]. Susan’s Favorite Resources Atcherson S., Rastetter D., Cordwell Carroll S. M., & McKee M. (2003). Cochlear implantation: Is it for you?.Journal of the Association of Medical Professionals With Hearing Loss, 1(4). Google Scholar Friedland D. R., Venick H. S., & Niparko J. K. (2003). Choice of ear for cochlear implantation: The effect of history and residual hearing on predicted post-operative performance.Otolaryngology and Neurotology, 24(4), 582–589. CrossrefGoogle Scholar Moog J. S., & Geers A. E. (2003). Epilogue: major findings, conclusions and implications for deaf education.Ear and Hearing, 24(Suppl. 1), 121S–1215S. CrossrefMedlineGoogle Scholar Niparko J. K., et al. (2000). Cochlear implants: Principles & practices. Philadelphia, PA: Lippincott Williams & Wilkins. Google Scholar Author Notes Susan Boswell, is an associate editor/writer for The ASHA Leader. She wishes to thank the many professionals who made the implant possible through their services and support through the decision-making and candidacy process, surgery, programming, and aural rehabilitation. Most of all, she wishes to thank her husband, Timothy W. Maier. Contact her by e-mail at [email protected]. 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