Coping With My Hearing Loss

By Ben W. Gilbert

“This is discussion packed with a bunch of random thoughts that I’ve used in talks before audiences of hearing people who want to know how I cope with my hearing loss.” .

-- Ben Gilbert

 For people with hearing loss, coping is making the best use possible of available tools. Although these tools are widely available, how they are used is a highly personal matter, what one desires of life, and what one can afford. As a long-time wearer of hearing aids, I don’t feel handicapped, but I am glad that the Americans with Disabilities Act (ADA) is around. Its umbrella facilitates participation in many activities. Advances in technology help immeasurably in lowering the communication barriers that plague people with hearing loss.

Here are a few glimpses on the environment that ADA and modern technology have created for me.

 I’m Addicted to Closed-Captioned TV

Television viewing without captions is difficult to impossible to understand. Sometimes I may look at a comparatively poor offering that is captioned, rather than a superb one that lacks captions. Television producers: please note.

At live stage and musical performances in Seattle and Tacoma, infrared assistive listening systems make the shows understandable to me. My personal infrared receiver that has a jack for a neckloop enables me to keep my hearing aids in my ears during the performance. The “MT” setting on my aids pipes in the infrared voices from the stage without shutting out the rest of the theater. Scripts and CDs consumed in advance enhance the actual presentation experience.

In making hotel reservations, I advise the desk of my need for an amplified telephone and a TV with caption capability. Some also install a smoke detector with a flashing light. In one recent experience, the hotel offered a fully equipped “handicapped-accessible” room. It seemed designed for me. I pack a small vibrating alarm clock to avoid dependence on telephoned alerts that I might sleep through, but I found a strong vibrating alarm in the hotel’s signaling package.

In addition to captioned television, I also benefit from real-time captioning. As attendees at SHHH National Conventions appreciate, real-time captioning, a computer-generated process, take much of the bewilderment out of meeting experiences. Our Tacoma SHHH Chapter is blessed with volunteer captioners who give our meetings an important extra dimension. Major gatherings of other organizations are starting to introduce live captioning, but unfortunately, not many do. Assistive listening systems are also helpful for meetings, but they often are unavailable. I may clip my FM transmitter to the microphone of the public address system. That works quite well. The FM system also works for me at around-a-table committee meetings.

Without planning for that use, e-mail has become a major assistive listening system for me, replacing the telephone for many communications. The less frequently-used telephone now serves me primarily as a backstop and for emergencies.

At home, a jerry-rigged but workable flashing light system based on a “Baby Cry” transmitter has been installed. It flashes whenever the doorbell or telephone rings or the electrically linked smoke detectors sound off with high-pitched warnings that I cannot hear. It performs the same service for my electric alarm clock that is also pitched to frequencies I cannot hear. I can hear the broader spectrum sounds of emergency vehicles, fortunately. Shouldn’t smoke detectors and similar alerting instruments be designed better?

My friend Lona Jennings, like me, an SHHH advocate, has an animated arrangement, Mikey, a wonderful hearing assistance dog who alerts her to such otherwise inaudible sounds. He is more fun than the flashing lights, and more assuring. He insists that Lona accompany him to the source of the sound. By comparison, the flashing lights are passive. On occasions where Mikey has a chance to demonstrate his talents publicly, he becomes the hit of the show, a role that he relishes.

These devices and techniques, supported by the ADA presence, have made life better for individuals with hearing loss. Regrettably, too many institutions have not yet provided what is needed, but progress is being made.

 I Am Excused?!!

A couple of years ago, I received a summons for jury duty. I explained that I have a hearing loss and would need an assistive listening device or an oral interpreter, explaining that I don’t use available sign language interpretation. Return mail brought a brief message: “You are excused.” That is an issue waiting to be resolved.

 Hearing Aids

Now, let’s talk about hearing aids. Although they help make the most of one’s remaining hearing, they don’t restore it to its earlier state. Under some circumstances, cochlear implants can help someone with greater degrees of hearing loss, but that involves major surgery. For now, I am sticking with my hearing aids.

A technical revolution has occurred with hearing aids. Vendors and convention research reports give assurance that the revolution is continuing. For me, there is no comparison between my pair of digital aids and the relatively primitive ones acquired 17 years ago as my first taste of the technology. State-of-the-art hearing aids can be quite expensive, as anyone who has purchased programmable or digital hearing aids knows. Only a tiny bit of the cost of my digitals was covered by health insurance.

Purchasing a pair of hearing aids requires professional assistance and support, I have learned. For a proper and happy adjustment, a prospective wearer should have a medical exam as well as a comprehensive audiometric hearing test. Follow-up adjustments, both to the instruments and to one’s psyche are needed. With the encouragement of the audiologist, I return periodically for needed adjustments and to replace ear molds and connecting tubes. Occasionally, counseling may be indicated. It’s not like getting a pair of eyeglasses.

Hearing aids help make better use of the hearing that remains. However, there also are personal and psychological factors that would be foolhardy to ignore. People with hearing loss may experience depression, employment problems, even family difficulties, as close readers of SHHH’s Hearing Loss know. Family members share a need to help their family members with hearing loss make the best use of the increasingly sophisticated equipment to their own benefit as well as the wearer’s. This may turn into a burden if the need is not understood and faced realistically.

“There’s Nothing Wrong with Your Hearing”

Maurine, my late wife of 53 years, took a while to accept the notion that I really had a hearing loss. She felt I wasn’t listening. “You only hear when you want to. Is your hearing aid turned on?” Although I didn’t turn my aids off, there was merit to her complaint, a tendency to be preoccupied or distracted. The fact that I had not always listened intently with unaided hearing contributed to her skepticism. Once she acknowledged that I had a genuine hearing problem, she became wonderfully supportive and helpful. She found out that face-to-face communication worked, but conversation across rooms did not.

I got my first hearing aid 17 years ago when I could not understand what my small grandchildren tried to tell me. Although I had sensed a hearing loss for perhaps 10 years before, my primary care doctor discounted the problem. He used a primitive device during annual checkups – a loudly ticking pocket stopwatch. He moved it toward my ear until I signaled that I had heard it. “There’s nothing wrong with your hearing,” he would scold. However, the stopwatch, operating at lower frequencies, did not reveal the high frequency loss I had.

My doctor, a great general practitioner, unfortunately did not know beans about hearing loss. Eventually, I saw a qualified audiologist who carefully mapped the sounds I heard and those I didn’t hear. The product of this first test, an audiogram, showed a “toboggan” loss, one that dropped precipitously on the right side of the chart, where the high pitches reside. Over the years, that slope has become steeper as I moved from a “moderate” to “severe to profound.”

Many low-frequency sounds remain intelligible, but I do not hear any high frequency sounds – the ones in which 80 percent of the consonants reside. I do best with middle range female voices, but do not understand those whose voices reach the ceiling. Although I do hear male-voiced sounds that hit the basement, I often have trouble sorting those sounds out, too.

Getting the sense of what is said is like trying to make sense out of a paragraph of prose from which consonants have been removed. I’m constantly seeking context. A telephone caller says: “How are you today?” I put up my guard, knowing that a pitch is on the way. What about? We are the “Slick Service selling siding.” I don’t hear the “S” sounds and miss other consonants. It comes across as “ick er eh eyd.”

“I have a hearing problem and have not found out what you want to speak to me about,” I tell the caller. “Please use some other words.” He says, “We’re in the housing repair business and would like to install new siding on your home.” I reconstruct his opening statement after a few seconds pause. Then we have an intelligent, although brief conversation. I did verbal handsprings to reach that point, but the caller had to make a special effort as well. Many people, even some family members, find this very difficult. A lot of phone sales people hang up, impatient to complete their quota of calls.

I still seek to understand why “yes” and “no” sound alike to me. No doubt, it’s a matter of elusive context. So, I often ask: “Is it affirmative or negative?”

Numbers can be more difficult than words. To my ear, “two” and “three” sound alike. So does “oh” and “four.” I use “zero” instead of “oh” and encourage others to do likewise. 

At a recent judicial forum, the judge who moderated a pre-election panel repeated the questions from the floor. I’m sure others in the audience also benefited. Even better are portable wireless microphones that connect the questioner to the rest of the room.

In elementary school music classes, my teacher told me not to join group singing. She left it at that, no doubt assuming I was just musically stupid, which I was, but she hadn’t the slightest idca why. In retrospect, it is clear I did not get enough of the sound spectrum to pick up the right pitch. It would be many years before I would lose enough hearing to limit overall speech comprehension – just music appreciation, a real loss that hearing aids might have rescued.

My 1983 aids just amplified sounds including some I did not want to hear – road noise, restaurant noise. Those noises are major problems and prompt some wearers to put their aids in a dresser drawer.

Aids now are much more sophisticated. Some aids manipulate sound, clip peaks to reduce painful sound spikes. Some are programmed by computer to match one’s audiogram, so-called “programmables.” Now digital hearing aids transmit sound to the hearing aid in computer language, chips as zeros and ones. They then get converted back to speech in the hearing aid. I get a clearer, better signal

Fitting hearing aids is very personal. One must want to wear them. I can hear on regular telephones that are hearing aid compatible through my T-coil, but I do better with special phones that have both sound amplification and tone controls. The T-coils in my aids do yeoman work, connecting me to telephones and assistive listening devices. New users should make sure that their aids come with strong T-coils.

When friends ask me about hearing aids, after asserting that getting hearing aids is not like getting eyeglasses, I urge them to get the best hearing aids they can afford. I’m not a fan of ads boasting about how “invisible” their aids are. People will help when they know a hearing impairment exists.

Wear them and flaunt them; that’s my mantra. It’s a way to tell hearing persons that you have communication needs. I wear a button that reads: “Please face me, I lipread.” It is astonishing how much it helps.

An active member of SHHH and president of its Tacoma chapter, the writer was one of the editors of TheWashington Post for many years and briefly served as the on-the-air editor of a nightly news program on Public Television. He was planning director of the District of Columbia for six years. A civically active retiree who has lived in Tacoma, Washington, since 1984, he claims to have acquired “post graduate” instruction in coping with a progressive hearing loss. He has worn hearing aids for 17 years. He recently acquired a cochlear implant. Look for a future article on his progress.