The official newsletter for Puget Sound District Umbrella of Self Help for Hard of Hearing People (SHHH)
Volume 4 issue 4
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SHHH and You
What is SHHH?
Self Help for Hard of Hearing People, Inc.(SHHH) is a non-profit, educational organization dedicated to the well-being of people of all ages and communication styles who do not hear well. SHHH is the largest international consumer organization of its kind.
Our primary purpose is to educate ourselves, our families, friends, co-workers, teachers, hearing health care providers, industry, government, and others about hearing loss.
We provide information on many aspects of hearing loss, from technological and medical advances to coping and parenting strategies. We want to inform you about options available to help you make the best decisions on how to deal with hearing loss.
If you are not a member of National SHHH, you are urged to join. Membership dues are $25 for individuals, $30 for couples, and $35 for families. You will receive the SHHH National journal called Hearing Loss which is published six times a year.
Make checks payable to SHHH and send your request to:
7910 Woodmont Avenue, Suite 1200
Bethesda, MD 20814
If you prefer, you can send your check to the SHHH Umbrella (see address on page 8) and we will forward it to National for you.
[Editor's note: Information for this column obtained from the National SHHH Brochure.]
by Gordon L Nystedt
This issue begins our fifth year of publication. It seems like only yesterday that we were preparing for our first issue. Never in my wildest dreams did I think we would be where we are today.
Our readership has tripled. The feedback has been extremely positive. Your generous donations have kept this newsletter going year after year.
There are several people involved with the operation of the Puget Sound SHHH Umbrella. I would like to offer specific thanks to Tom Weicht, vice president; Elaine Maros, secretary; Penny Allen, treasurer; and Russ Von Querner, auditor. Without the dedication of these people, there would be no Umbrella or newsletter.
While I write the newsletter, I have a dedicated group of people who play the role of critic. They help correct errors as well as offer suggestions on how to make the newsletter more readable. They are as follows: Penny and John Allen, Elaine Maros, Diane Jandl, Karen Utter, Emily Mandelbaum, Joan Baker, and Lona Jennings. My thanks to each of you.
We have many hearing health providers who, not only display our newsletter, but make copies for their clients. These wonderful professionals help us grow! We could not exist without their support.
You, our readers, deserve a real pat on the back. It is your financial support and input that makes this newsletter possible. It makes all of our effort so worth while. From all of us at the Umbrella, thanks from the bottom of our hearts.
Your Hospital Stay - Try To Make it
by Gordon L Nystedt
Sometime during our lifetime, all of us will likely be spending time in a hospital. It can come at the least expected moment as it did in my case. But regardless whether it is expected or not, we all need to do our part to make it as pleasant and safe as possible.
Recently I suffered a heart attack. As I was riding in an ambulance to the hospital, when I arrived in the emergency center, and even in the operating room, my number one concern was that the attending personnel did nothing to deactivate my cochlear implant. My second concern was informing them how to communicate with me.
Whenever we are in a medical situation, it is important to stop bluffing. We must let the medical people know how to communicate with us and when we do not understand their questions. It could be a life and death situation. Shaking our head yes or no, with a smile on our face in reply to a question we did not understand could have a devastating affect on our health.
I had to inform the doctor it would not do any good to talk loud directly into my ear. I let him know that I needed him to stand back so I could see his face. In general the attending personnel did an excellent job in the ambulance, emergency room, operation room, intensive care unit, and regular ward in communicating with me. I advised them what was needed, and they tried their best to meet my needs. They put a sign over my bed indicating I was hard of hearing. They must have done an excellent job of identifying my records.
All who came to my room were fully aware of my communication needs. For example, I had informed them I was going to take off my implant for the night and would no longer be able to understand, except for the written note.
People came into my room throughout the night. Every one of them was carrying a pencil and paper. Valley General Hospital in Renton deserves a round of applause for how well their staff communicated with a person with a hearing loss.
I did have problems in a few areas. One was the telephone. While I did not need one that was amplified, I did need one that would accept the patch cord supplied by Cochlear Corporation. They had a very difficult time finding me a telephone. If every hard of hearing person that uses amplification at home would request an amplified telephone when they are in the hospital, our problem would go away. The hospital would know immediately what is required. But apparently very few people request an amplified phone.
The second thing I noticed was that none of their educational videos were captioned. The hospital sent me a letter after my discharge asking me to comment on their services and I advised them of the importance of having their videos captioned.
We have every right to expect our hospital stay will be a pleasant one. Hear are some suggestions:
* If you have a medical card with instructions (as do all cochlear implantees), be certain the medical staff makes copies and puts them in your
* When you enter the hospital, educate the staff on how to communicate with you. Each of us is different. If you do not tell them, they are not going to know.
* If you have an amplified phone at home, you must be certain to request one when you are in the hospital.
* If you use captioning on your TV at home, insist that the hospital supply you with captioning during your stay.
* Do not bluff!!! Your health is far too important to pretend.
* If the staff did a good job in communicating with you, thank them. If the equipment you requested was not available, let the hospital staff know of your disappointment.
SHHH Salutes West Seattle Members
At the beginning of each new publishing year (Fall Issue) we salute a person, professional office or group of people for their activity on behalf of SHHH.
There is a lot of work involved in preparing a couple of thousand newsletters for mailing. For the last three years, Elaine Maros has arranged with the Fauntleroy UCC Church for space to fold the newsletter. She also alerts the West Seattle Chapter members and other group/chapters of the upcoming folding event. For the past three years an average of over 15 members from the West Seattle Chapter have generously volunteered their time to help fold, tape and label the newsletters.
Thank you, Elaine Maros! Thank you, Fauntleroy UCC Church for giving us the space to accomplish this event. Thank you West Seattle members for returning over and over again. Recently some of the members from the South King County Chapter have also come to assist us in this event. SHHH salutes you all!!!
The High Cost of Vanity
by Ann Liming
For the 22 million Americans with hearing loss, vanity may be one of the reasons that less than one fourth of those who struggle to hear human voices, as well as sounds around them, wear hearing aids. Considering that employers view people who wear hearing aids as less attractive and less intelligent and actors compare the role of a hearing impaired person to playing an "inept" person, it is no wonder the hearing aids are shunned or even hidden by the hairstyle of the wearer. The question is, do we lose more by attempting to hide our hearing loss than is gained and specifically, what are some of the costs?
A major cost occurs when we allow ourselves to become isolated from others. This can happen by our own choosing or by the avoidance of others because they do not know how to communicate with us. In our isolation we not only lose the joy and support found in relationships but also the opportunity to educate an uncomprehending world. Only as we make our hearing loss visible will we displace the myth of deaf and dumb and demonstrate to others that there are ways for us to communicate with one another comfortably. Perhaps a higher cost is that in our isolation we also deny ourselves the opportunity to learn about coping strategies and assistive technology that could offer us greater independence, enjoyment and fulfillment in life.
Another cost we must consider is the loss of security that we impose on ourselves when we fail to address our hearing loss in work and volunteer situations. Employers and fellow employees, as well as fellow volunteers, do not naturally understand the difficulties we experience or how to adapt their approach to us. Paralyzed with fear that we might lose our jobs if we admit to a hearing loss, we may appear unsociable and angry and find ourselves in mutual withdrawal with everyone involved not understanding what is occurring.
Sharing about our hearing loss, coping strategies, and even requesting assistive technology can go a long way toward making a job experience an enjoyable one. We may be surprised at the support we receive and learn that we are a valued employee that the employer doesn't want to lose. An accommodation may be the answer both of us are looking for to keep us on the job.The last cost to be explored here is the loss of the bond that a hard of hearing person experiences when they meet another person with a hearing loss.
Despite the fact that hearing impaired persons constitute the largest disability group in the United States, we often feel all alone. We have no idea that there are so many people in our own communities with similar hurts and difficult experiences. We also miss out on meeting those who are succeeding in overcoming communication difficulties and transcending their hearing loss. When hard of hearing people come together there is a sense of belonging and a sense of family because we are united together by the common experiences of our hearing loss. There is strength in knowing that others understand. Without this association we are robbed of mutual support and opportunities to learn from one and other how to live with hearing loss on a day-to-day basis.
Trying to hide a hearing loss can exact from us a very high price. Only a few of the costs have been mentioned here. Each of us must consider the cost for ourselves and determine if openness about our hearing loss is right for us.
Having a disability can make one vulnerable, but vulnerability that is chosen, can be a beautiful quality and a true sign of strong person.[Above reprinted with permission from the MI-SHHH-IGANIAN newsletter. Ann Liming is the SHHH State Coordinator for Michigan State.]
In-The Canal (ITC) Hearing Aids
I am sure you have seen ads showing a hearing aid that is so small that no one will know you are wearing it. Why is a hearing aid advertised as something to hide? It's difficult enough to educate the hard of hearing population that hearing loss is nothing to be ashamed of. We do not need hearing aid manufacturers to perpetrate this myth in their advertising.
Many people have great success with the in-the-canal (ITC) hearing aid. But ask yourself several questions before getting one.
* Is my memory as good as it used to be? If I took the ITC hearing aid out and forgot where I placed it, would I be able to find it again?
* Is my eyesight as good as it used to be? Might you have the same problem locating it as a person with decreasing memory?
* Are my fingers as nimble as they used to be? Would I be able to change the battery and make other adjustments as necessary?
* Am I willing to pay the higher cost? Normally an ITC will cost more that the behind-the-ear (BTE).
* Why am I getting the ITC hearing aid? Is it because it does a better job for me? Or is it because I am embarrassed about my hearing loss?
Hearing loss is nothing to be embarrassed about. When purchasing your hearing aid be certain you purchase the one that gives you the most clarity and understanding. Talk it over with your hearing health care professional. Come to a local SHHH meeting and see how others have learned to overcome their embarrassment concerning hearing loss. Don't forget you have a 30 day trial period.
It is Much More Than Just a Meeting
by Lou A Touchette
When I joined SHHH a few years ago I was looking for information on ways to help myself deal with a dratted hearing loss. I was frustrated and tired of never being able to hear people or carry on decent conversations. Maybe I was looking for a miracle, but I had to give this a try.
I had read a Dear Abby column about a group that was organized for the benefit of helping hard of hearing individuals help themselves. I called the number that Abby had printed in her column and began waiting. In what seemed like just days, I received a letter from the Everett Group President Mr. David Pearson. This man was so genuinely sincere and willing to help me that I attended a meeting ... and joined that same day.
I learned so much about hearing loss from Dave, guest speakers, and others within the group. Within just one year I had upgraded to a wonderful set of Phonak hearing aids, bought a Pocket Talker II, and learned how to address people who would talk to me. Instead of being timid and stand offish, I learned that it isn't wrong to ask someone to face you when speaking, to speak slowly and clearly, or in a group, ask people to speak one at a time. But, while learning all about helping myself, I made another discovery. I had actually made many new friends within the group. These people didn't care that I didn't hear every word that was spoken. They didn't look upon me as a "handicapped" or "disabled" person. They genuinely cared about me as a person.
Soon, I began looking forward to each and every meeting with great anticipation. When I walked into the room, people would come up to me and greet me like they were really happy to see me. Another interesting thing I've become aware of is that almost everyone within our group is willing to help out in some way. We all have our hearing loss in common and it just doesn't seem to make a iota of difference to each other. We have positions from president on down and we all realize that they are important and necessary ones. It warms my heart to see individuals willing to step forward to assume and fill these necessary and important positions, people with no previous experience and practiced skills. Yet, because we are all dedicated to what our group stands for, they willingly serve when needed.
When it is my turn to serve, I will be proud to step forward and do my part to continue the important service SHHH performs for all hard of hearing persons. I would likewise issue a challenge to each and every member of a local SHHH group or chapter to also willingly and proudly step forward when called upon to serve.
We are all in this together and have a responsibility to ourselves as well as each other. SHHH serves a very important service. It just makes sense that we should give back in some way what it has given us.[Editor's note: Reprinted from the Everett March SHHH Newsletter]
Escape and Avoidance
by Penny Allen
In 1965, when I was 20 years old, I was hired as a "stewardess" for United Air Lines. I easily met the strict requirements of good health, proportionate height and weight and that all-American-girl look. Over the years as a stewardess, and then as a flight attendant, so much emphasis was put upon personal appearance, that I took for granted nature's gifts, and my aspirations were nothing more than a trim body and beautifully manicured nails.
When I was about 36, I became concerned about the loud ringing in my ears. I went to a specialist, who told me that I would be wearing a hearing aid by the time I was 45 and that the airplane noise definitely had played a role. Just before my 40th birthday I was told I had a progressive hearing loss (which I later found out to be hereditary). I purchased two small hearing aids and let my hair grow to cover them. So much for the fountain of youth.
I remember discreetly asking someone in our union about the consequences of my hearing loss on my job career. She didn't know of anyone with hearing problems, but she didn't think that it would be wise to tell management about it either. I opted not to tell. I was horrified when she later sent me a book on sign language!
Since Seattle was such a small base, I knew nearly everyone with whom I worked. This was a time when many women were being fired for not fitting the physical profile, such as being overweight and I was afraid that my hearing loss would disqualify me.
The only time I really got in a bind was when I slept through two alarm clocks and numerous telephone wake-up calls from the front desk in a hotel in Anchorage. I made the flight with 30 seconds to spare (and I was in charge!) That's when I first realized that I needed to get something to wake myself up besides a ringing alarm. That's also how I met Pam Hurst from the Hearing, Speech and Deafness Center in Seattle, who introduced me to flashing alarm lights. I remember how astounded she was that I hadn't told anyone about my hearing loss because I was afraid I'd get fired. She kept insisting on my rights and quoting the ADA. I thought she was nuts!
Just about the time my hearing was getting really bad, I transferred into an international domicile where there were around 2,000 flight attendants. The planes were bigger and they carried more people. It was easy to get lost (as was my intent by then). Most of my comprehension came from reading lips, as the airplane noise overpowered the sound of voices. Fortunately, the majority of the passengers were foreign, so I could easily explain my misunderstandings!
During the last four years on my job, I put myself in considerable personal danger by concealing my hearing loss. I slept through an earthquake, a typhoon, fire alarms, people knocking my door, and people walking into my hotel room.
It never occurred to me to quit my job, because I made good money and enjoyed the benefits. The jet lag and the week-long trips only compounded my hearing difficulties. Because I thought no one would understand, I kept everything in my head. Those last few years were so emotionally draining, I avoided socializing as much as possible. (I would frequently read three books each trip). My normal friendly demeanor became cautious and secretive. I had frequent headaches, stomachaches, and weight loss. I equated my hearing loss to a slow painful dying process, and I couldn't correlate my job with my physical disability. The two just didn't fit together!
At home I avoided old friends and situations where I would be "found out". I used to entertain a lot, but my husband and I stopped having friends to the house and we no longer went out. We stopped going to movies, I surrounded myself with solitary hobbies. My greatest fear was losing my closeness with my children because of my inability to understand.
Looking back over all those years, I see my progression into hearing loss as arduous, and something I fought all the way. It took a very long time to grow into it mentally. The flowers and rhinestones I put on my hearing aids are to me, a symbol of my struggle to overcome the stigma of hearing loss and the joy I have to be a part of society.
Two years have passed since I made the decision to retire. I have had to make many adjustments, most of which I should have done years ago. My life today is full, and I rarely think about my hearing loss. I've undertaken many things I never thought possible. Most of my understanding and acceptance have come from being involved in SHHH and working with other hard of hearing people. Hearing loss isn't a dead end. It's just another fork in the road.[Reprinted from the Kitsap Group Newsletter EARS The NEWS.]
Washington State News for Hard of Hearing People"
is the official newsletter for Puget Sound District Umbrella,
Self Help for Hard of Hearing People (SHHH)
President Gordon Nystedt
Vice-president Tom Weicht Secretary Elaine Maros
Treasurer Penny Allen Editor Gordon Nystedt
This newsletter is published quarterly. Deadline for articles, letters, information and questions for the next issue is October 15th.
Submit news to:
Opinions expressed in this newsletter are those of the person submitting the information and not necessarily those of the SHHH Puget Sound District Umbrella. Mention of goods or services does not mean endorsement nor should exclusion suggest disapproval.
Pregnancy and Hearing Loss
by Kirsten Robbins, Renton
I am a 34 year old with a profound hearing loss who has worn hearing aids since age five. I am also pregnant with my first child. About the time I discovered I was pregnant I noticed a significant change in my hearing. I immediately went to my audiologist at Virginia Mason for a hearing test, and, sure enough, my bad ear was even worse. With the okay of the OB doctor, Dr. Langman placed me on a one week cycle of diuretics and told me to come back for a retest in a couple of weeks. Evidently, during pregnancy, often during the first trimester, fluid is retained in the middle ear and this impacts hearing. This is quite common among hard of hearing pregnant women. I had not heard of it before and thought maybe other readers could benefit from the information. If caught soon enough, the diuretics can help bring back some of the hearing. My retest showed that some, but not all, came back to the prepregnancy level. He will continue to monitor my hearing every other month throughout the pregnancy. If you are hard of hearing and pregnant or planning to get pregnant in the near future, be sure to schedule audiograms along with prenatal doctors appointments.
If anyone has tried one of the hard of hearing baby monitors, I would appreciate any comments, as I am shopping for one.
Phonak Hearing Aid
by Dolores Gahler, Anacortes
I've been wanting to tell you I have the Phonak SonoForte which Karen Burroughs of Pacific Hearing and Speech Services in Everett has programmed for me. I love it!
I have great volume for quiet environment (without feedback!) and two other programs for increasingly noisy environments. This means I can get along pretty well in noisy restaurants, Rudy and I can converse in our noisy Dodge van, at night! I definitely have better comprehension and can understand some things without speech-reading. My comprehension on the phone is better without the hearing aid, or the "T" coil, although, I could use the "T" coil if it were necessary. The speaker would have to speak very slowly. I wonder if it ("T" coil on telephone) is something like getting used to hearing with a CI - sounds a little tinny or harsh.
Karen is very professional, competent, kind, and willing to spend all the time I need to get the aids programmed satisfactorily. I'm really happy with the aids.
by Betty Ruble, Auburn
I do so enjoy your "Coordinators Comments," especially the one of Spring '97 on letting people know about SHHH and all the wonderful devices that are available to us. I struggled about 15 years with my loss. Finally had to give up a wonderful, lucrative job, as I was pushing my phone almost inside my head to try and hear better.
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