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ODHHS Information
Living with a Progressive Hearing Loss
(Source: Boystown Research Registry)
 
 
I first lost some of my hearing during a bout with rheumatic fever when I was four years old. Over the next few years my little sister Susan became invaluable to me by helping me understand things that happened too quickly such as when we were watching TV or playing a game with friends outside. She became my partner in hearing the world around me.
 
Beginning school was very traumatic for me. I couldn´t hear and the teachers thought I wasn´t trying. I would end up out in the hall being punished with the students who were misbehaving. During this time my mom worked with me on my speech at home and I credit her for teaching me to speak so clearly. The ability to speak clearly would benefit me for many years to come, as I gradually lost more of my hearing due to a genetic hearing loss running in my family.
 
I felt isolated in both the classroom and on the playground, and had no friends at school. Fourth grade was especially difficult for me and I failed most of my classes. Prior to the start of my fifth grade year, my parents took me to get a hearing aid for the first time. I can clearly remember stepping out of the hearing aid store and hearing stones hit the sidewalk as a truck passed by on the street. That year school was a completely different world for me as I made friends at school for the first time. My grades also improved and I felt like a normal person.
 
Being a normal person and acting like a hearing person became very important to me. I was very discreet about my hearing aid, and if I missed something that was said, I didn´t ask for it to be repeated. I had a great group of girlfriends in high school who helped me if I didn´t hear something. I made a joke out of my hearing loss by calling myself the "Bionic Woman", after a popular TV program of the time. I felt like I was handling my hearing loss in a great way. Even if I missed some information sometimes, I would not speak up.
 
After I graduated from High School, I completed testing through our state Department of Vocational Rehabilitation. I remember the counselor telling me which careers to avoid because of my hearing impairment. I signed up for classes at the University of LaCrosse and decided to major in Social Work. I found that it was impossible to hear in the large auditoriums filled to capacity with students. In high school I had a network of friends to help me when I didn´t hear in class, but I had no such support in college and I dropped out after one semester. I was hired by the State of Wisconsin, and I have been working for the state for the past 18 years.
 
During my first years working for the state, I had a supervisor who mumbled and spoke softly. Even though he knew I had a hearing loss he made no effort to speak clearly or enunciate. It was degrading and very stressful to struggle with this person every time I went to work. One day I talked with a friend, Lew Stark, who was mobile impaired and worked with laws for the disabled, about the situation. He told me it was my responsibility to make people understand that I couldn´t hear. He said everyone could see his handicap and understand that he couldn´t walk, but that no one could see my hearing loss and that I was entitled to hear all the information in my world. This was a new perspective for me. I thought people would be considerate enough to help accommodate my hearing loss by speaking clearly or facing me so that I could lip read.
 
When this didn´t happen I ended up feeling hurt and isolated.
 
The conversation with Lew was a big turning point for me. I began to realize that I was trying to act like a hearing person, and that this had set me back.
 
I slowly became more assertive about speaking up when I couldn´t hear something and became more selective about the activities I would take part in. For example, I wouldn´t go to big parties because I couldn´t follow the conversations. When my son, Jesse, was born I was happy that he was hearing. Two years later my daughter, Brooke, was born. When she was two or three years old, she was diagnosed with a mild hearing loss. Brooke seemed to have the same type of hearing loss as my mother and brother. This type of loss begins mildly and is slowly progressive.
 
The diagnosis of a hearing loss in Brooke was another turning point for me in my lifetime struggle to deal with my own hearing loss. Especially important was Brooke´s Kindergarten year. Her teacher did not understand about hearing loss even after I explained it to her; I felt that history was starting to repeat itself. I was determined not to have my daughter experience the same difficulties I had in elementary school. I began to work with the school system. By the beginning of Brooke´s first grade year, the school system had purchased an FM unit and hired a teacher trained specifically to work with hearing impaired children. The hearing impaired teacher focused on helping establish good listening skills, lip reading techniques and assistance in learning to read. I am grateful to the school system for working with me in providing the best possible education for Brooke.
 
As my hearing loss has progressed over the years I began to wear two hearing aids. I have incorporated several tools to make my life easier, namely a closed caption TV, volume control telephone receiver, and a light on my telephone. I am planning to purchase an alarm clock that shakes my pillow (my son, Jesse, wakes me up now) and a light system for the doorbell, phone, and smoke detector. I strive to make these tools an everyday part of our lives, so that if Brooke ever needs to utilize them she will feel comfortable using them. Today, if I don´t hear something, I have no problem speaking up. I have found that time is too precious to miss out on information that could make you a better person. I feel everyone has limitations, and we all have to find a way to work around them.
 
By: Jeanne M. Hart

Date Originally Created: Spring of 1995.
The information presented here first appeared in publications of the Boys Town National Research Register for Hereditary Hearing Loss, the National Institute on Deafness and Other Communication Disorders (NIDCD), Hereditary Hearing Impairment Resource Registry (HHIRR), or the Boys Town Research Registry for Hereditary Hearing Loss.
 
 
The Boys Town Research Registry for Hereditary Hearing Loss
 
The Boys Town Research Registry for Hereditary Hearing Loss (Registry) is designed to foster a partnership between families, clinicians and researchers in the area of hereditary hearing loss/deafness through three primary functions. First, the Registry disseminates information to professionals and families about clinical and research issues related to hereditary deafness/hearing loss. Second, the Registry collects information from individuals interested in supporting and participating in research projects. This information is used to support the third function of the Registry - matching families with collaborating research projects.
 
For more information, contact:
Research Registry for Hereditary Hearing Loss
555 N. 30th Street
Omaha, NE 68131
800 320-1171 (V/TDD)
402 498-6331 (FAX)