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Frequently Asked Questions
How old were you when your hearing loss diagnosed? I lost my hearing when I was 18 months old. I contracted meningitis and high fever that almost resulted in my death. In an effort to bring my fever down, my doctors gave me two strong antibiotics with risky side effects. Those medications saved my life, but they also took their toll on my young body. I left the hospital with a profound hearing loss, but my parents did not know about my deafness until several months later. My deafness was discovered on Christmas day when my mother dropped some pans in the kitchen that made a crashing sound. The noise scared everybody in the family but I did not react to the sound. My grandmother who was helping me play with my new toys realized that I did not react to the noise and told my mother that she suspected that I might have some hearing loss. Mom refused to believe that anything was wrong with me and to prove her point took a wooden spoon and banged on a pot behind me. Much to her surprise - I did not turn my head and continued to play with my toys. What was its severity? Was it a progressive loss? Tests revealed that I had at least a 120-decibel hearing loss in my right ear and a 90-decibel hearing loss in my left ear-and that’s what I’m wearing my hearing aid. Without hearing aid and cochlear implant, I hear nothing from either ear. Did you have any spoken language at that time? Before I became deaf, I was communicating like any other 18-month-old hearing child. What kind of schooling and therapy did you have that enabled you to learn to speak well? My mother was a schoolteacher so we did a lot of homework. She chose acoupedic approach, which meant I had to use what hearing I had and to rely on auditory stimulation. I visited a private speech therapist twice a week. It took me six years to say my last name correctly. I did not learn sign language until I was in 11th grade. I was mainstreamed in public hearing school until 4th grade and then I attended Central Institute for the Deaf, which was an oral school located in St. Louis, Missouri. When I was 14 years old, I went back to public high school and graduated with 3.6 GPA without having a sign language interpreter. Did you have any role models when you were growing up? If so, who were they? While I was growing up, my mother was my big role model. She did not let adversity and doubters prevent her from pursuing her dreams for me. Helen Keller also became a role model of mine when I was in 4th grade. As most people know, she was born in my home state of Alabama and became deaf and blind at around 18 months of age. I felt like she was my sister and I began to take her words and accomplishments very seriously. She influenced me not to use my deafness as an excuse for not achieving my dreams. 
What do you feel boosted your self-esteem most growing up as a deaf child? Through ballet I was fortunate to find a place to escape, a refuge from my feelings of being an outsider. The dance studio was the one place I felt accepted and "just like everybody else" was in the dance studio. Hoping to improve the rhythm of my speech, my mother had enrolled me in a ballet class when I was five years old. The ballet class boosted my self-esteem. As I became a teenager, I began to participate in the sport of orienteering - a popular competition that involves being dropped off in unfamiliar woods with nothing but a map and a compass. Orienteering enabled me to increase my self-esteem, and I found that I also loved the thrill of competition. Competing on an equal footing with hearing people assured me that my mind and heart were no different from theirs, and when I won the state orienteering championship, my self-confidence increased by leaps and bounds. I’m sure that God used this competition to help me on the journey toward my dream because by the time I began to compete in pageants, I was already familiar with intense competitive experiences. Did you have friends who had normal hearing as well as friends who had hearing loss growing up? I had only hearing friends most of my childhood because I was the only deaf child in the public schools. However, by the time I became a teenager, I had several oral deaf friends. It was healthy for me to have both deaf and hearing friends. Did you wear two hearing aids prior to getting a cochlear implant? Prior to having cochlear implant surgery I wore only one hearing aid in my left ear. Unfortunately, I could not hear any sound from my right ear even with the help of hearing aid. For this reason, I used my right ear for the cochlear implant. My right ear had been sleeping for 28 years until the cochlear implant woke it up on September 19th, 2002. In the past was lip-reading your primary source of communication when others were talking? Lip reading has been a primary source of communication for me, but I also listened with the help of my hearing aid. If I only read lips I would not get very much information. When I was a little girl, I was discouraged from relying upon lip reading. My mother, my teachers and my speech therapist would all cover their lips in order to challenge me to develop my residual hearing in my left ear. Now, I am pleased to tell you that I read lips less often with the help of cochlear implant and hearing aid together. I don’t get too tired anymore after I have a long conversation. Did you find lip reading stressful? I find lip reading very stressful and frustrating because I am often confused. For example, if you look at person’s lips saying dog and saw, they look the same. With my hearing aid alone, I do not hear "s" or "d" sounds. So usually I have to use my common sense. For example, if someone said, "The dog is running across the street." Then I knew it was not the saw who ran across the street – it was the dog. Most hearing people do not understand that people in my position have to think incredibly fast in order to keep up with conversations. One-on-one conversations are not that stressful, but group conversations when coupled with background noise are nearly impossible. Lip reading is a grueling and exhausting mental exercise and lip readers are constantly thinking and trying to discern what is actually being said. I get real mad at those who think that I am stupid simply because I cannot hear. The truth is I get exhausted after a while and simply cannot keep up. At that point, I begin to guess at what is being said and eventually give up and choose to be quiet.
Do you have any advice for those who are considering a cochlear implant for themselves or their children? Most importantly, I suggest them to find a doctor they can trust, research the various types of devices that are available and speak to as many implant recipients as possible to learn from their experiences. I am not a doctor, but I have some general observations. First and foremost, there are major differences between people who are hearing impaired. Some lost their hearing later in life and some lost their hearing as an infant or prior to birth. For infants and children that have severe hearing loss, I strongly recommend that they consider having a cochlear implant if they do not benefit much from their hearing aids. The brains of younger children are receptive to developing the capability to maximize the benefit of a cochlear implant. This provides them with a good chance to develop their communication and speech skills. The same is true for older adults who have sudden severe hearing loss. Those individuals have previously developed the critical brain pathways to recognize and comprehend speech. For adults like me who have not heard sounds for many years, the decision to receive an implant is more complicated as many people in my position have no history of comprehending sound. Further, my brain is not like that of a child and is not very interested in learning to do something new. I had not heard a sound from my right ear for 28 years, not even with the help of hearing aid. My right ear and brain connections did not have an opportunity to develop language and speech when I was a toddler. I have depended on a hearing aid for my left ear ever since I was a toddler and I can talk on the phone, listen to the music and hear the sirens. Of course, I cannot understand what the people are saying on the radio nor can I understand a conversation with a group of people or hear a preacher or a speaker from the stage. I was relatively content with my deafness and my hearing aide until my oldest son started to become more independent. He began to walk away from me instead of being in my arms and he also began talking more. He often asked me questions about the sounds he had heard and I could not answer his questions because I did not know what he was hearing. I also realized that I missed his crying from a distance. One time in particular, Little John fell down in the backyard and I saw my husband walking to him and comforting him. My husband had heard him crying and I had not. It bothered me in a great way because I wanted to be there for my boys. That is the primary reason that I chose to have a cochlear implant in my right ear.
I learned from my experience during the first four months with the cochlear implant that having a better hearing takes much determination and a lot of faith in God. Changing my lifestyle is painful and frustrating, but I believe it is worth it because I did finally hear my boys’ cries from the back yard. Four months after surgery, I realized that I was beginning to understand my boys’ speech better. For example, before I had a cochlear implant, my oldest son had to repeat what he said about ten times. Now he only has to two or three times. I am getting better at hearing. So my advice for older adults with a long-term hearing loss is that they must be very patient because they will succeed at different pace from young children and older adults who experienced sudden hearing loss. How did your husband, parents and friends react when you told them you decided to have the surgery? They all were very supportive as long as I felt it was a good decision. They did not push me to have a cochlear implant. They just wanted me to be happy with myself. How old are your sons? My oldest son John was born on January 16th, 2000 and my other son James was born on June 12th, 2001. Has their hearing been tested? If so, what kind of tests did they have? Yes, Georgia passed the law requiring all newborn babies to have a hearing-screening test before they left the hospitals. I don’t know what kind of test my boys took in the hospital because I was not in the room where they performed the hearing tests. Do they understand what the cochlear implant is? My oldest son is proud to say that he is Dr. McCallum because he loves putting my cochlear implant on my ear. He understands why I have it. He tells people that my ear is broken. How did you decide which cochlear implant to get? I was still uncertain about having the surgery until I read, "Sounds from Silence, Graeme Clark and the Bionic Ear Story." Dr. Graeme Clark performed the first successful cochlear implant surgery and has been working on improving the Nucleus for more than thirty years. As I read his book, I realized that Dr. Clark became a Christian while in college and asked God to help him with his work on the cochlear implant. I am a Christian as well and it was important for me to know that a gentleman who is a believer and has faith in God invented the Nucleus. How many months post-activation are you now? I had my surgery on August 7th, 2002 at Johns Hopkins Hospital in Baltimore, Maryland.
What are you able to hear on the day of activation? The Nucleus device was activated on September 19th, 2002. My husband John, my boys, my mother and mother in law were with me when I first heard my first sound - the clapping hand of my audiologist, Jennifer Yeagle. When I first heard the clapping, I heard it and thought it was a dream. Then she clapped again. It hit me that the sound was real, not a dream. I immediately began weeping. I could not hear my boys’ voices on that day. But later on that day as I was getting ready in the hotel I moved my make up supplies around in their plastic carrying case and, to my amazement, I heard small clicking sounds as the makeup bottles clicked against each other. It was so startling that I forgot what I was looking for and just stood there moving things around several minutes. A few minutes later, I pulled out a small can of hairspray for my hair. I pushed the button and heard the spraying sound - I was so startled I stared at the can and pushed the button again, just to be sure the button and the hissing sound were linked. Again and again I pushed the button, delighted with a new sound, one I can never remember hearing from my hearing aid. Later that day, I could hear people’s voices a tiny bit, but I could not differentiate between them. And the voices were incredibly soft - so quiet it was frustrating to strain to hear them. I was brushing my teeth and not paying much attention to sounds, when God took advantage of the quiet moment to surprise me with the most beautiful sound I heard that first day. As I turned on the water, a beautiful, natural music danced in my ear and I recognized the rhythms in the sounds of dripping water. I could hear water with my hearing aid, but the cochlear implant made the sound much more crisp. I turned the water on and off, enjoying the sound and thinking of my role model Helen Keller, for whom the feel of running water triggered understanding and opened the window to a new world. She had been overjoyed by the experience, and I shared that same joy on the first day with my cochlear implant. That night as I lay in bed, I heard God’s voice speak to my heart: "Heather, I will bless you with a new gift of sound every day. You will hear your boys at the right time because I love you." What do you hope to hear and/or understand in the future? I have a much better understanding of my boys’ speech and more ability to hear what they hear with the help of my hearing aid on my left ear and cochlear implant on my right ear. I don’t expect myself to hear all of it but at least close to every sound they hear. I’m already pleased and grateful to the Lord for answering my prayers.
Are you working with a speech pathologist or auditory therapist to learn to listen with your implant? If so, how often are your therapy sessions? What do you do in your therapy sessions? This is a controversial question I am dealing with because many auditory therapists and speech pathologists have strong opinions on what I should do for a listening therapy. During my first month with a cochlear implant, I discovered that living with it made me feel more tired than usual-my brain was overwhelmed with new sounds and it took effort to decipher them all. On top of all the new sounds, I had to deal with two active boys who were sometimes fussy. I was worn out and did not want to have a therapy at all. Then I finally paid a visit to a therapist in her office a few weeks after my cochlear implant was activated. I began to feel exhausted fifteen minutes after we started. I thought about my difficult childhood and all the thousands of therapy sessions in which I had to learn how to speak and interpret sounds from my hearing aid. In a way, I was starting over at 29 years old. I didn’t really want to start over-I’d enough speech and auditory training as a child to last ten lifetimes-but many auditory therapists I met strongly believed that I should attend sessions in the offices between two and five days per week. But how could I manage that kind of work when I had responsibilities to my children, my husband, and my speaking career? And auditory therapy is not inexpensive-added to that, I had to pay for the babysitters every time I went to therapy. I was overwhelmed that I went into the backyard and turned off my hearing aid and the cochlear implant. I had expected tears of rejoicing, what I tasted were tears of defeat. I wish I could tell you that the clouds rolled back and God boomed reassurance from heaven, but that did not happen. I remained terribly depressed for several days, and my frustrations with my new hearing did not magically vanish. I began to visit my personal Christian counselor for a couple months. She helped me keep my head above the dark waters that had threatened to drown me. During this time, God spoke softly to my heart and said, “Be encouraged.” I began to look for practical solutions to some of the problems that were bothering me. Dr. Niparko, my surgeon, had suggested that I spent one hour alone reading and listening to books on CD. The only time I could find to do this was six a.m. before my boys awoke. I chose to listen to the recording of the Bible on CD while I read along. The first few days were distracting because I was not familiar with the soft new sounds I was hearing. I read the first psalm about fifteen times and could only understand one word: psalm. I became completely discouraged. Then God showed me that he made two ears for a reason-and he expected me to use both. So I grabbed my hearing aid and used both the cochlear implant and my hearing aid to listening to the Bible CD. With that technique, I began to make progress. I began to have more confidence and noticed that I had a better understanding of speech. I also take 30 more minutes for three days a week by using Nancy Tye Murray’s CD Rom called Conversation Made Easy. It is a speechreading and conversation strategies training for people with hearing loss. I ordered it from the Central Institute for the Deaf website. It is very flexible with my busy schedule and very inexpensive. I use it at my home with my cochlear implant alone. For those who are the parents of deaf children, I strongly recommend that you enroll your child with a professional speech therapist because children need a lot of therapy and teaching. I had a tremendous amount of professional therapies when I was growing up. That is the reason I am able to communicate so well with the hearing world. What is the best part about having your cochlear implant? The best part about the cochlear implant is that I am becoming more aware of what is going on in my house and around my boys. One time I caught my boys climbing into the bathtub because I heard the fast running water. I also am beginning to understand my boys’ speech more. I really don’t care about other things like going to the movie. I just want to be part of my boys’ lives and want to hear what they hear. I also hope to do a better job on being there when my boys need me, especially when they cry. Four months after my activation, the cochlear implant brought me a great relief when I heard a cry realized that my oldest boy was crying in the backyard. I had heard him in the back yard even though the door was closed. How has it changed your professional life? I have a better chance to express my concerns to the government about the needs for the children and elderly with hearing loss and bring awareness of new technologies for those who have hearing loss. The media attention that I have received has helped raise awareness and break down barriers for people considering cochlear implants. I am honored that God opened the door for me to help more people in the deaf community. Would you consider having a second implant done for your other ear? No, I can still talk on the phone with my hearing aid on my other ear. I believe it is not necessary for me to have another expensive surgery and I also want to wait for the better technology in the future. It just makes more sense for me to stay with my hearing aid in my left ear. |
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