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ODHHS Information
Hearing Loss Due to Otosclerosis: A Personal Perspective
(Source: Boystown Research Registry)
 
 
I am from a family of five girls and two boys. Four of the daughters and one of the sons have experienced a hearing loss. Three of the four daughters were diagnosed as having Otosclerosis, and the son began to lose his hearing at the age of nine years due to a high fever, probably from measles, but he also has Otosclerosis. He had a successful cochlear implant three and one half years ago. One of the girls began to lose her hearing when she was nineteen years old. She wore a hearing aid at meetings and in the classroom part of the time for three or four years before she died of cancer at the age of twenty-eight years. Another sister noticed a hearing loss fifteen years ago, and had corrective surgery for it a year and a half ago. One parent, our mother, began to lose her hearing when she was seventeen years old. Her mother also had a hearing loss.
 
I began to lose my hearing at the age of nine years, and sat in the classroom and understood what I could. I did not wear a hearing aid until my senior year of high school. Having a hearing loss was embarrassing and frustrating, for it put me in the uncomfortable position of sitting close to the teacher. (Have you ever heard of a kid who likes to sit close to the teacher?). Also, I could not hear the instruction when the teacher´s back was turned to the class, nor could I hear the class discussion.
 
As an adult, I still experience some frustration due to the hearing loss, but I have learned how to adjust to it and to handle the difficulties that are related to it. I accept the fact that there are some communication situations in which it is impossible to hear.

Strategies for Hearing in Difficult Situations:
 
Background Noise. One of the most common and most difficult situations is a noisy environment, particularly in a restaurant. There are three things that can be helpful in this type of communication situation:
  1. Try to control the seating arrangement.
  2. If possible, control the size of the group.
  3. Use an assistive listening device system.
 
In a restaurant, I ask to be seated in a quiet area, and then I try to be the first person seated, or I explain to people the communication difficulty that a hard of hearing person has in a restaurant or noisy environment. They let me select the table and the seating arrangement that is most advantageous for my hearing. I sit with my back to the wall or to the area in which few people are seated to lessen, behind me, the amplification of voices and background noise, such as music and dishes being removed from the tables.
 
I also use an assistive listening device system in a restaurant, and place the microphone in the middle of the table or near a person who has a soft voice and who is difficult to hear. Communication is easier if the size of the group is limited to less than four people. Otherwise, I miss a lot of the conversation and have to catch words here and there and try to make sense out of the spoken words. Many times, I converse with the person who is seated on my right side next to my best ear. Communication is easier if a hearing person tells the hard of hearing person the topic of conversation.
 
Noise is a factor in a social situation at which people stand and visit with one another. The conversation moves rapidly from one person to another, and the amplification of voices and environmental noise is an almost impossible situation for many hard of hearing people. Visiting in small groups and being in as quiet an area as possible is helpful. Even then, people turn their heads to converse with another person, and I miss the conversation because I am dependent on speechreading as well as hearing to try to make sense out of the amplified garbled noise (voices, music, dishes and other sounds).
 
Communication in a noisy environment is very exhausting for a hard of hearing person because intense concentration is required. Sometimes, I retire to a quiet area where I can be alone and relax for a few minutes.
 
Group Meetings. In a gathering of people and depending on the size of the group, seating in a semicircle, or at the end of the first row where I can see to speechread the other participants provides an advantage when trying to follow the discussion.
 
Repetition of questions or comments by the leader is also helpful, and at times, a necessity in order to understand the spoken words. The use of an assistive listening device system is helpful if all of the speakers speak into the microphone. If the conversation flits across the room from one person to another, I cannot follow the spoken words. A regular microphone is helpful, but the same problems given above occur if the speakers do not use the microphone. It is impossible to hear the speakers who roam around the room and away from the microphone, because their backs are turned to me so that I cannot hear them.
 
I find the following seating arrangements in a group a disadvantage:
  1. Sitting in straight rows
  2. Sitting far apart in a large room
  3. Sitting in a circle
 
Seating in any of the three arrangements is a disadvantage because I cannot hear or see to speechread other participants at the meeting.
 
When in a group and someone tells a joke, I often miss the punch line because other people start to laugh before all of the words are spoken which cancels out the speaker´s voice, or because the speaker drops his/her voice at the end of the sentence. Sometimes, I ask the person seated next to me to repeat the punch line, or I wait until after the meeting to ask for the punch line.
 
I use an assistive listening device system at the Toastmasters Club of which I am a member by placing the transmitter and microphone at the lectern, the focal point of most of the speeches and comments. The other members are very understanding of my need for this type of system. In the Toastmasters Club, I have developed public speaking skills, confidence and leadership skills. Also, I have had the opportunity to present information about hearing loss, thus increasing the understanding of this communication difficulty.
 
When I am the speaker, facilitator or the coordinator at a meeting, some helpful communication strategies are:
  1. Ask a normal hearing person to be my ears for me and repeat questions or comments that I do not hear.
  2. Ask a normal hearing person to take notes so that I can concentrate on listening and speechreading. I cannot write, speechread and listen simultaneously.
  3. Ask the participants to raise their hand or stand up when they wish to speak. Otherwise, I cannot locate the source of sound which causes a lot of stress as I search for the person who is speaking.
 
As the speaker at these meetings, I emphasize the importance of a hard of hearing person having a sense of humor. For example, one evening when my husband and I had finished eating, he picked up his dishes, and as he was walking to the sink with his back to me, he stated, "I´m about to run out of steam." I thought he said, "I´d like some more iced tea." We both laughed when he told me what he had said and I assured him that there was not any steam in the refrigerator. Life is easier when people laugh with you rather than at you.
 
Automobiles. When riding in a car, it is advantageous to sit in the front passenger seat where I hear less traffic and car noise, and I can hear more of the conversation. In this position, if there is one person in the back seat, I can hear better if that person sits behind the driver so that I can turn and speechread him or her. If I am sitting in the back seat, the best position is directly behind the driver so that I can see the faces of other people (except the driver) in the car.
 
When crossing the street as a pedestrian, I watch carefully, looking both left and right before starting across because I may not hear the traffic, and I have difficulty locating the source of sound.
 
Telephones. All telephones are not hearing aid compatible, nor are all of them equipped with an amplifier. The quality of some of the telephones and amplifiers is not good. Usually, I make calls on the telephone before I leave the house, or after I arrive home. Sometimes when I am at a location with poor telephone facilities for a hard of hearing person, it is necessary to go home and make a call on my own telephone. Other times, I ask a normal hearing person to call for me, which is inconvenient and a handicap, but it is the best solution in certain circumstances.
 
At Home. At home, an assistive signalling device, a flashing light, is used to indicate when the telephone and doorbell ring, and when the alarm on the clock sounds. An assistive listening device is used with the television so that I can hear what is being said.
 
As a Christian, I have committed my life to assisting people who have a hearing loss to live with it and to providing information about devices that are available to make life more comfortable. Also, I try to help normal hearing people understand some of the difficulties that hearing impaired people experience as a result of a hearing loss.
 
Marian Reyburn. Marian has her M. S. in Deaf Education and is the Vice Chairperson of the Board of the Nebraska Commission for the Hearing Impaired as well as State Coordinator of the Nebraska Self Help for Hard of Hearing People.

Date Originally Created: Spring of 1992.
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 us at:
Research Registry for Hereditary Hearing Loss
555 N. 30th Street
Omaha, NE 68131
800 320-1171 (V/TDD)
402 498-6331 (FAX)


http://www.boystown.org/​​

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