One evening, as we are carrying the bowls of bread pudding we make for my sister-in-law's cafe out to the car, my thirteen year old daughter Linnea screws up her face and asks, "What is that awful noise?"
"I don't hear anything unusual. What's it like?" I ask.
"High. Whiny. Really annoying. Maybe it's the car," she says as we put the bowls in the back of the station wagon. She calls to our dog, who loves going to Splash and walking on the beach, but this time Seneca doesn't want to come. She sits resolutely on the sidewalk indicating that she would rather go for a walk in the neighborhood. I shake the leash. She sits on the sidewalk. Finally Linnea drags her into the car by the collar, which is no easy task - Seneca weighs more than 50 pounds!
Tom comments, "No wonder she didn't want to come into the car. That noise is terrible."
"Yeah," says Linnea's friend Natalie, who's with us. "It's way louder in the car." I tap on my hearing aids to make sure they're on. They're on.
"Maybe it's the radio," says Tom, turning the dial up and down and then off. "Nope. Must be the engine. Poor car. It's getting old."
"Well, it's really, really annoying," Linnea with that edge of that teenage condescension in her voice. "Why do we even have a twelve year old car?"
"Poor Seneca," says Natalie. "Dogs hear so much more than we do."
"You're lucky you can't hear it," Tom points out to me. "Linnea's right. It's a very irritating noise, really high and loud. It sort of cuts through everything."
"I guess," I reply. I don't mind not hearing the noise, but I do feel like the odd one out. In a couple of blocks we're on the freeway. The rubber parts of the old car are in the process of perishing, and the wind noise overrides all conversation for me now. The girls are talking in the back and Tom makes an occasional comment, but I'm watching the colors along the coast as they shift toward sunset.
We park near Splash and head down to the beach to catch the last light. Tom notices that the sound keeps going even when the car is off. "That's a relief," he comments. "Sort of."
"Maybe it's the nuclear power plant," Natalie suggests.
"No, that would be a siren. This could be the power lines, I suppose," responds Tom.
"It is really, really, really annoying," Linnea repeats for at least the fortieth time.
The surf is high and crashing hard against the shore. We're walking right next to the water because the sand is firm there. All I can hear is the crash of the waves. After a short while Tom indicates that he wants my bag. I give it to him, wondering why. The cell phone is in there. Maybe he's remembered something important and needs to make a call. Sure enough, he takes out the cell phone and looks at it, but then he puts it into his pocket without using it and continues to look for something else in my bag.
Next he pulls out my PockeTalker which I always take to Splash because it's so very useful there. Immediately I see that the little green light is on. Apparently it's been feeding back in my bag the whole time.
So it's my device that's causing all the noise that's driving everyone but me nuts. So, am I lucky not to hear really, really, really annoying sounds or do I feel sorry for myself because I'm obviously missing that frequency of sound pretty completely? I don't know. I vacillate. I try so hard to see the lessons hearing loss brings me, but I'm not sure of what the lesson is here - other than checking to see if that green light is on at the wrong time.
I feel for Seneca. Lately I'm more and more aware of how loud the world is to humans with good hearing. Imagine what it's like for dogs.
Poor Seneca.
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Based on my experience, two things come to mind when people with hearing loss anticipate the holidays; I am not going to enjoy myself and no one is going to help me.
Both of these attitudes cause us to look for a somewhere to place the blame, either on ourselves, or on those around us.
In the course of my life, I have learned that expectations influence my ability or inability to manage situations. If I expect to hear, I will be disappointed. If I expect not to hear, I will be disappointed. However, if I accept the limitations my hearing loss presents rather than view them as obstacles I can use them as a catalyst to action.
By accepting my limitations, I will not be able to participate in conversation in this environment, I allow myself to choose to be an observer. What do I mean by choose? If I am deaf/hoh, I do not have a choice.
Most people who experience hearing loss also experience feelings of being out of control, of having lost the right to choose to participate in communication. I have found that to be untrue. We have lost the ability to receive communication the way we are accustomed, but we have not lost the right to participate. We can choose to work for the communication we desire, or we can choose to participate in a different way.
Facing hearing loss as an exciting challenge in communication, rather than a loss, gives us the motivation to find ways that work. It can become a great adventure.
One of the most successful skills I have employed during the holidays is helping out. What better way to feel part of an event than participating in the preparation, activities and clean up. I can help in the kitchen, set the table, do the dishes, refill coffee cups, and serve dessert without having to have conversation with anyone, yet still have contact with everyone.
Those of us with hearing loss are not the only ones who sometimes feel left out in large gatherings. Look around you, watch the conversations that are going on, see who is not participating and single that person out. (invite them to another room if necessary) Tell them something you would like them to know about you, your life, your work... Not only have you engaged in conversation, you have helped someone else who is experiencing involuntary isolation in the group.
Looking for what you can put into an event instead of what you can get out of it can eliminate feelings of inadequacy, fear, resentment, rejection and benefit everyone while you enjoy being part of the celebrations without having to depend on others.
Christine Seymour is a long time SWC member, talented photographer and writer. See her work at her web address below:
http://www.silentinspirations.com
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It is true that there is life after deafness. I would never had returned to school if I didn't become deaf enough to take advantage of the resources available to me because of my disability.
Now, I don't like to be disabled anymore than anyone else, but this was a blessing in disguise. When I could not hear on the phone anymore (even with amplification) I got my first TTY and a taste of the Relay Service. Sure it wasn't (and isn't) perfect, but my life was better for it since I could at least not have to struggle on the phone.
The benefits did not stop there. Free long distance, and a printed record of conversations with anyone I wanted to have a record of was a gift that has been wonderful to someone that felt like he was losing everything in small bites.
In school I got an interpreter, (even though I didn't know how to sign, I resigned myself to needing to learn sign language- something I love to use) and exposure to real-time captioning where I had notes of the entire class dialog for review and study. I became a resource for those who missed class and I could 'lend' them my copy so that they would not fall behind. My understanding grew, but it wasn't perfect with the delay and mistakes, but better than I could do without help.
Asking for help becomes easier when you know that it may or may not come. You just accept things better when you have more choices. I went through many Vocational Rehabilitation counselors in my quest for finding employment and funding for school. I was eligible for financial aid and Social Security which took some of the money pressures off of me so that I could concentrate more on school. But still my ears rang- it wasn't so bad compared to just thinking about that small problem. I know it isn't such a small problem for some, but I learned to deal with it like many other things that I had little or no control over.
My life as a musical person seemed to be past and I felt bitter about the loss of sound for that. I play instruments and design and build electronic things that are musically related. It was so hard to accept my loss and I tried many things to get the most out of the hearing I had left. I began to appreciate the little bit of sound that came into my head- it seemed to matter more the worse my hearing got. It was a real Catch-22.
Then when things started to get darker still and quieter yet (and more tinnitus even!) I became lucky enough to get deaf enough to be a candidate for a cochlear implant. Now I have music in a whole new way (not perfect, but like I have said many times acceptance is the key) and I sit here listening to music while I type this letter and especially enjoy music on the long drives to and from school. What I thought was lost was indeed lost and then given to me as a gift earned in part by me being willing to make changes in my life.
Change is hard, but staying in the same place is harder. Try standing without moving compared to walking and you can tell what I mean. We are made to move and to move through life is what our destiny is.
Do I still hear the buzzes, screeches, tones, whistles, gongs, bells, and trains in my head? Yes I do, but the implant has made that a lot less disturbing and evident. The masking effect of hearing aids and making the most of what hearing you have is a good stance against the 'sounds in your head'. Sometimes I just listen to it on purpose and wonder what it means or play with it like I can control it. It can be a form a meditation to listen to your 'own sounds' and just let you thought follow that path. The sounds change, and so do you.
Mark Ashley
Late deafened- hearing aids at 18
Cochlear implant last December
Perpetual student of life
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At work, we were asked to support a goal of diversity by starting with ourselves proceeding to the people around us.
So now you may be wondering what he meant. I can shed some light on that.
I was reluctant to share my own disability but discovered that it's perceptible enough for people to know something is different about me; but because I'm viewed via individual cultural lenses, the labels I get are incorrect, and not always flattering.
One person thought I was being inattentive and another called me rude right to my face. Ouch! That really hurt. Others said I am,
“A Wild Woman.”
Yes, that's right. A Wild Woman, and it's not because of the sports car I drive. You see, I work in a building and share floor space with Acme Power. One of the Acme Power guys hung around outside each morning, smoking his cigarette as I came in each day.
At first we just exchanged morning pleasantries.
"Hello, how are you?" A smile and nod a polite exchange of words and expression.
Then we got to chatting more and more but no big deal. He was not my best friend!
Recently, I ran into a college buddy of mine at work, but he wasn't sporting nice pants and a button down shirt. He was grunting with the rest of the landscaping crew because he was laid off and could not find another electrical engineering job!
I was stunned to see him and vowed to help him in any way possible to find a decent job. I figured my friend at Acme Power could help because you tap into any resource you can when job hunting. The guy was easy to track down and he said he'd keep an ear open for anything promising.
Twenty minutes later, my telephone rang and it was my AP buddy telling me to come down and get an application for my friend because one of their electrical engineer’s had suddenly announced his last day with the company.
I ran downstairs to get the application but realized he called me without ever knowing my name. We had never exchanged names and my badge sporting my picture and name is hidden from view by the site badge. How did he do that? I pondered as I walked to his office.
He was waiting for me with a big smirk, so I asked how he got my name and number.
"Oh, it was easy!" he said. He asked the women in his office (whom I had never talked to). He described me, and they all immediately told him,
"Yeah! That's Shirley!" but cautioned him to be careful because "Shirley is a wild woman".
He asked, "What do you mean by that?!" and they replied,
"Oh gosh, when Shirley talks to you she gets in your face and just doesn't let up! She is a Wild Woman". Hmph! That's when he said,
"Shirley isn't wild. She doesn't hear well and was trying to lip-read".
The women immediately erupted with a chorus of "I didn't know! I didn't know!" and "I am SO embarrassed!"
Now they know.
You know, I tend to think everyone hears as badly as I do so I too need to be more aware. So, when working with your peers try to remember that we all act differently and do things our own way for a myriad of reasons, and they might not be what you are thinking.
One of those reasons may be because of a disability. Be aware, and let us all be comfortable with letting our disabilities be known.
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