Thirty years ago before I joined HLAA I was asked this question: “What does it mean to be hard of hearing in the hearing world?”
Hearing loss is a chronic stressor. Trying to hear is exhausting because of the effort and concentration required to understand, to communicate. Sheer fatigue can cause a person to tune out when there is no more energy left to unscramble sounds.
I was depressed all my life. I used to think it was being a woman, or my marriage or the way my family raised me. I began to snap out of it in 1974 when I began Alanon, a 12-step program for friends and family of the alcoholic (but I wouldn’t have been able to go to Alanon if I hadn’t started to wear two hearing aids in 1970). Alanon did help, but also I could now hear well enough to go back to school, and I now realized that I must sit in the front row center. It makes me wonder – were my problems caused by my husband’s alcoholism or being hard of hearing.
I am often left out and passed over because I cannot communicate as quickly as other people. I feel so close to the hearing community, yet separated by a great chasm. I often laugh at a joke only because everyone else is – but not knowing what was funny, I am crying inside and feel left out.
It is knowing I could be witty and sparkling because I have the personality, the vocabulary and the intelligence for it, but not being able to hear well and quickly enough to respond as I would like. It is being unable to hear your children because their voices are soft and high pitched. It’s like being crippled. Conversation is a game of tossing words back and forth. If one is hard of hearing the conversational ball is endlessly dropped and fumbled and thrown back half heartedly because you really can’t follow the conversation well. And people get tired of talking to you. So you withdraw into isolation.
You are careful about who you talk to. You know whom you can hear and whom you can’t. It is living in the same house with your new son-in-law and never speaking to him because his words tumble out far too quickly for you to comprehend and his volume and speech pattern is too breathy and uneven. You avoid anyone who doesn’t speak clearly and fairly loudly. It is holding back and not taking the initiative when meeting people. It is being paid a compliment but not really being sure what was said. It is being careful when hugging someone because your ear molds whistle. It is going home after visiting with friends and wondering what was talked about. It is sitting in the patio at a nice dinner party and knowing that as the sun does down, you will be able to hear less and less easily, and when it gets fairly dark be unable to participate at all.
When I was young I never heard the romantic words my lover was saying. You only make friends with and marry someone who speaks loudly and clearly. I sometimes wonder if my hearing loss kept me from remarrying.
Being hard of hearing is like endlessly living in a foreign country where you can never really learn the language. Communication is key in any relationship and hearing loss challenges every part of the communication process.
Thirty years later: “Do you feel differently about your hearing loss? What has changed? What has HLAA meant to you?”
Finding SHHH in 1984 was the beginning of a whole new life for me. There was a bulletin board in the Audiology Department of my HMO. I took down the names and addresses of all the organizations having to do with hearing loss and wrote to each. I received a flood of information. I was out of the darkness. I learned about the national support group SHHH (Self Help for Hard of Hearing People) now HLAA. I joined and began reading the SHHH Journal. But best of all I found there were SHHH meetings in my area. I went to the very first SHHH meeting in Los Angeles, started by Rocky Stone’s sisters. At the meetings I learned about FM and captioned TV. I still remember when someone brought his FM and showed me how to use it. I was no longer alone. HLAA gave me a sense of belonging, friends, causes to advocate for, information, technological support and a hard of hearing family. I had never met another hard of hearing person until I found SHHH in 1984 when I was 65 years old. One of the first hard of hearing people I met was Nanci Linke-Ellis.
I feel a personal responsibility of making sure that every person with hearing loss knows about HLAA and the support and information we provide. I want to make everyone aware of how many of us have this invisible disability, and I want to try to make the real world truly hearing accessible.
Why didn’t Audiology tell me about HLAA. Without HLAA I am totally alone, isolated. In the real world, I don’t know a single hard of hearing person (although they are all around me). Nobody ever told me I had a hearing loss and should wear hearing aids. I got annual checkups to get a report on my health. For years I was told my health was excellent when in fact I was in poor psychological health. I was anxious, under stress, withdrawn, isolated. I had trouble with my close relationships. I heard my own children with difficulty. It was almost impossible for me to go to school or work. My three children, with a mother wearing cochlear implants (CIs) have never had their hearing tested. I don’t believe people with hearing loss are in denial – the helping professions are not doing their job.
To this day, in gratitude, I am heavily involved with HLAA, doing outreach, the Walk4Hearing, advocacy, going to meetings, hosting Christmas parties, editing the state newsletter The Hearing Loss Californian since 2001, anything to help further the aims of HLAA. I was president of the SHHH, San Gabriel Valley Chapter from 1985-1990, and a member of the State Board of Trustees from 1997-2011, serving as President from 2001-2003. I was a member of the California Department of Education Advisory Task Force for the D/Hoh; a member of the Board of Directors of the HEAR Center, a non-profit speech and audiology center in Pasadena from 1996-2007; a member of the City of Pasadena Commission on Accessibility and Disability, from 1990-1995; and winner of HLAA’s highest national honor, the Keystone Award, in 2003.
I’m beginning to have fun. Rhianon Gutierrez (CI wearer who lives with me), a film maker/producer asked me to play Elegant Lady in a short student film she was working on. This was a real job. I went to Makeup and Wardrobe, earned $50 and played one scene (which wasn’t cut). I was with Occupy Democracy Pasadena in the Doo Dah parade as Elegant Lady (Let them eat cake). National has said several times, “Please don’t wear blue jeans to the banquet”. Do they mean us in the Wild West? I will dress as an Elegant Lady in Providence to show them that culture is alive and well in California.
I had a big 90th birthday party in 2009, inviting my two families—my Sacramento family and my hard of hearing family.
I love the arts. I live in an art factory with new works coming out all the time. My house is an art gallery, showing mostly the work of my artist son, Stan Edmondson.
I have always been interested in politics, but because of my hearing loss I never got involved. I just joined Occupy Democracy Pasadena. I made 100 T-shirts with ‘We are the 99%’ on the front, and a fist and ‘Occupy Pasadena’ on the back, selling at cost $8. We meet every two weeks to plan our demonstrations. And here is my hearing problem.It’s like Thanksgiving or eating at a noisy restaurant. About ten of us meet at Judy’s house. The room echoes, some people don’t have great diction and several people speak at once. I haven’t told them I am hard of hearing. What to do? Our chapter has a portable loop, but it takes too long to install it every time. I think I will confess I’m hard of hearing, ask that they speak one at a time and ask somebody to be my buddy and fill me in on what is being said. Interesting. These people will never feel like family to me.
In 2010 I got a job as a lab rat for House Research Institute, which paid $15 an hour and travel expense. I sat in a sound proof booth, listening to musical sounds and recording responses on a computer. The goal was to improve perception through auditory training to make music listening more enjoyable for future cochlear implant users.
My speech comprehension got worse and worse so I finally qualified for a cochlear implant. I am now a bilateral wearer of CochlearAmericas Nucleus 5, one implanted in 2005 and the other in 2010. I am hearing really well with my CIs. With a good loop system, I can hear almost normally without lipreading. I have joined the HLA-LA advocacy committee and I have a goal to loop Pasadena.
My personality has changed. I was always quiet and withdrawn and avoided talking to people. I’m witty and talkative today. I always knew I was but being witty depends on good hearing. My speech pattern has changed. I used to speak in such way that people could just say ‘yes’ or ‘no’. I didn’t want people to give long answers that I couldn’t understand. I used as few words as possible and never used ‘small talk’. Now I can bat the conversational ball back and forth and don’t mind if people give me a long answer. I don’t avoid people today, or wonder if I will be able to understand them.
My rules for living. Always say YES unless you have a compelling reason to say No.
Follow your heart, don’t be afraid to be different. Don’t allow hearing loss to stop you from following your dreams. Come out of the “hearing loss” closet. If you deny your disability, you deny yourself accommodations. Get involved with HLAA.
Count your blessings. Be grateful. During the recent windstorm in Pasadena, a huge branch broke off a tree and dropped on the porch right outside my bedroom. Didn’t bother me at all. Didn’t hear a thing. My son said the dog had an anxiety attack.
I have been through three major earthquakes. The plaster is knocked off in the corner of my bedroom from the frame of the house twisting. It must have made an awful racket. But I didn’t hear a thing.
Hearing loss has given me a second family—my hard of hearing family.
93 years old, going for 100.