Control Over Hearing Aids: A Consumer’s Perspective

By Carolyn Haas

 

When I got my first hearing aid, I was an immature 13-year-old high school freshman. I was meeting weekly with a special education teacher because I am blind. She noticed I was struggling with orientation and navigating the school hallways, and I wasn’t always responding appropriately to questions. A trip to the school nurse and a hearing screening later, I was off to the nearest dealer who fitted me with a Zenith hearing aid in my right ear.

In those days, hearing aids simply turned the world louder. The good, the bad, and even the ugly all came in louder, although not clearer. The wind would drive me crazy as it blasted over the hearing aid’s microphone.  I was frustrated and overwhelmed by both the noise and the embarrassment of wearing a hearing aid.  Like so many people, I would find excuses to leave it behind, in a drawer, in my desk, in my backpack – anywhere but in my ear. 

I also felt it was unnecessary. I was a musician – with perfect pitch – playing acoustic guitar for church and for fun. So how could these people say I had a hearing loss?  Turns out that audiograms and word tests in the quiet, still-as-death sound booth do not lie. I had a documented sensory-neural hearing loss in my right ear. 

Four years later in my college dorm, I was heading out to join my friends in the cafeteria for breakfast. As I grabbed my key and ID, something made me stop and go back to my desk. I finally realized that I could continue trying to fool people, but really, I was only fooling myself.  I was denying myself the use of a tool that made conversing less of a challenge.  I stuffed my hearing aid in my ear and finally began to accept the reality of my hearing situation.

At age 23, I became a binaural hearing aid user. By then (the early 1980s), there were in-the-ear hearing aids and even directional microphones, so I could keep my hearing aids a secret. I still wasn’t fully accepting my hearing loss and its impact, often to my own detriment. It took a very long time for me to truly appreciate the importance of openly acknowledging my hearing issues and the need to take advantage of the amazing emerging technology that could help people like me cope with it more successfully.  As technology improved, there were digital and programmable hearing aids. We now have the added capability of using Bluetooth for connecting to streamers, other assistive listening devices and even directly to our smartphones.   

Today, some sounds are amplified while using compression and masking to keep other sounds in the background. For some, this is a mixed blessing. Having grown up with analog hearing aids, I am more comfortable with unaltered sound. As a blind traveler, I need all the input I can get to be oriented in buildings and on streets.  Even the ambient sounds in a room and bouncing off of the walls can provide good information about room size and density. When walking outdoors, being able to hear the direction and flow of traffic is critical to being able to cross streets independently. Even more critical is full awareness of what is happening when there are the sounds of trucks squealing, horns blaring, sirens howling and construction machinery revving and beeping. 

Most people would prefer not to hear these sounds and certainly not at full volume. The good news is that hearing aids have a built-in element called automatic gain control (AGC). This means that the sounds that are particularly loud and could potentially damage remaining hearing ability can be automatically squelched. Those sounds can be made softer, or they may even cause the hearing aid to briefly cut out all sound.  This is not good for a blind person relying on hearing to navigate safely. In situations like mine, a blind hearing aid user may have a program in which AGC is turned off, allowing a more complete sound spectrum.  In the interest of hearing preservation, audiologists who haven’t worked with a blind person might understandably be hesitant to do this. 

I remember riding in an ambulance after breaking a leg. The siren was causing my hearing aids to turn louder and softer intermittently. The paramedics were trying to talk with me and keep me from passing out.  But I couldn’t hear them correctly because of the digital hearing aids doing what they are made to do.

Of course, other hearing aid wearers will have differing needs and sound preferences, depending on their specific hearing loss. Different combinations of frequency, decibel and even the positioning of an ear mold can affect how we hear and process sound. For most of us, speech discrimination is the most important reason for wearing hearing aids.  Being able to tell where sounds are coming from is important, but depending on the severity of a person’s loss, hearing aids may not provide much help with sound localization.

Hearing aids provide so many programming options to help us hear, but their complex settings mean that changes can only be made with the intervention of the audiologist.  This is probably not a bad thing. I have immense respect for audiologists who must program the hearing aid to our particular loss. Besides understanding the complexities of frequencies, decibels, ear and brain structure, audiologists have to be computer-savvy. They must ask the right questions to determine the consumer’s needs well enough to provide the most functional programs for each individual.  A good rapport between hearing aid user and hearing professional will help us get the most out of our residual hearing.  

But I have sometimes felt helpless in the face of my own hearing complexities. How do I know whether the way things sound in a room will be anything like they sound in the lobby or outdoors?  How can I express that concern in a way that will make sense to a fully hearing person?  How well will I adjust to the new and different sound of a new hearing aid, or a small change in programs on my regular aid?  I suspect most of us experience these kinds of concerns. Can our audiologist get the program to do what is best, given our lifestyle and specific hearing needs?  Will the program and the ear mold allow for canceling feedback enough that we can play music?  Can the hearing aid be set to maximize our ability to detect sound direction, and can it augment our hearing enough for us to be functional in the hearing world filled with walls of ambient sound?

As hearing aid consumers, we have much to cope with beyond the acceptance of hearing loss. We have to find the right audiologist, and we have to do our best to communicate our needs, and then hope and pray that the audiologist can pair us with the best possible aids to meet those needs.  We hope our audiologist is patient enough to work through the issues of adapting to the technology.

What was once so simple a choice – to wear or not wear a hearing aid – has become a complicated set of parameters.  We have gained a lot in terms of being able to hear more and better, but we have lost autonomy over the use of our hearing aids. I grew up with all sounds coming in equally through analog hearing aids, so I have a very strong preference for raw analog sound.  Digitally enhanced sound, for me, is like eating margarine rather than butter; somehow it just doesn’t seem real. My audiologists are constantly struggling to provide me with the minimal amount of compression (how sound is shaped and enhanced by the digital programs), to keep me from complaining.

Sometimes, just sometimes, I wish I could go back to when the hardest thing about getting hearing aids was the decision to wear them. Yet, without programed digital hearing aids, I most likely could not be using my voice as my primary communication mode. Like every other hearing aid user, I have to hope that hearing aid engineers and programmers design them with a good understanding of how their work impacts the end users.  

Audiologists deserves our appreciation and respect, as they work in a field that changes as quickly as the technology that makes it possible. The better we communicate our hearing difficulties and needs, the more likely we will have those needs met and our struggles addressed. Our hearing professionals can help direct us on the path to better hearing and happy and healthy social interaction.

 So, let’s put on a smile and our hearing aids and go take on the world!

 

Carolyn Haas is a freelance writer and an advocate for Deaf-Blind services. She has a Master’s degree in Social Work from Loyola University and lives in Denver, Colorado, where she also enjoys reading, throwing pottery and learning to play the mandolin. 

 

About Gael Hannan

Gael Hannan is a writer, speaker and advocate on hearing loss issues. In addition to her weekly blog for HearingHealthMatters.org, which has an international following, Gael wrote the acclaimed book "The Way I Hear It: A Life with Hearing Loss". She is regularly invited to present her uniquely humorous and insightful work to appreciative audiences around the world. Gael has received many awards for her work, which includes advocacy for a more inclusive society for people with hearing loss. She lives with her husband on Vancouver Island, British Columbia, Canada.

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CRAIG T. BARTH

I felt that your presentation was fair,honest, balanced, articulate and well thought out. In my 30 plus years of practice, I have occasionally served patients with your unique needs. The blessing comes in your ability to well articulate them. To me, that is a joy! All I have to do is listen and find the right technology that optimally works. In those cases, the Audiologist-Patient relationship, by the patient’s lead (at least in my practice) is that of a partnership. On the other end of the continuum,there are patients, when I explain the pros and cons of certain features, the… Read more »