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I’m a Mentor for Those with Hearing Loss. Here’s How I Tell Them to Face Unexpected Hearing Challenges

Thursday, March 18, 2021

On the morning of July 3, 2017, after decades of reliance on hearing aids to help me cope with progressive, debilitating hearing loss, I began a new chapter in my years-long hearing loss journey when I received a cochlear implant (CI) at Massachusetts Eye and Ear Infirmary in Boston. The decision to take this step had been long in coming, my significant and stubborn ambivalence finally giving way to encouragement from my peers who had CIs, and my efforts to educate myself about them.

On the morning of my surgery, as my husband and I drove through the streets of Boston on our way to MA Eye and Ear, the letters on the license plate on the car in front of us read AUD and were, to me, a final, positive sign that a CI would help me to move past the chronic stress and disruption of being unable to freely communicate with friends and family.

Hearing better with a CI

And that it has! Over the three-plus years since I was first implanted, my speech comprehension, although not perfect, has become noticeably improved, and I feel generally less stressed, unburdened of the intense sense of fatigue and wariness that had been toxic by-products of my communication struggle.

One of the most interesting changes has been that learning about how to manage communication, relationships, and well-being with hearing loss has become less of a cause to heal my sense of myself. My work as a volunteer with the life-saving consumer advocacy organization Hearing Loss Association of America is no longer driven so much by my personal needs but more by my interest in involving myself in opportunities to make the world a better place for all of us who live with hearing loss.

Perhaps most important of all, since I received my CI, the memory of my mother’s struggle with hearing loss – the very loss of her to hearing loss – has begun to lose its power to trigger deep sadness about what might have been, and I feel a profound sense of optimism and gratitude.

 Oddly enough, when I’m in New Orleans, a noticeable, worrisome decline in my speech comprehension always seems to materialize.

— Peggy Ellertsen, Speech/Language Pathologist & Hearling Loss Mentor

There will still be challenges

It is hard to overstate the extent to which my implant has made a difference in my life. But, life, of course, is complicated, and there is an odd twist to my story. Each year, I spend the three coldest months of winter living in New Orleans, where I have family. Oddly enough, when I’m in New Orleans, a noticeable, worrisome decline in my speech comprehension always seems to materialize.

And even with all of the progress that I think I have made in understanding my hearing loss and how to deal with it, with this emergence of the old struggle, familiar catastrophic thoughts begin to rear their heads. My implant is failing. Disaster has struck. Hearing loss is my curse! Of course, as often happens, feelings that emerge from those thoughts are predictable: discouragement, failure, and even shame. But there is an important lesson in this.

As I’ve worked through my strange New Orleans hearing loss conundrum, a neglected habit of mine has become reinforced: If I catastrophize and allow worrying to take over, the process of patient problem-solving and reflection becomes that much harder. If reflexive negative thinking about the state of my hearing replaces the very mindfulness I need to examine the problem, I leave myself without the ability to understand what is actually causing what, and am unable to find a solution.

Even with all of the progress that I think I have made in understanding my hearing loss and how to deal with it, with this emergence of the old struggle, familiar catastrophic thoughts begin to rear their heads.

— Peggy Ellertsen, Speech/Language Pathologist & Hearling Loss Mentor

Remember important lessons

Recently, as I once again stumbled my way through my reaction to the New Orleans hearing mystery, I finally pulled from my tool box the Communication Model that is included in the curriculum of the Peer Mentoring for Hearing Loss Program at Gallaudet University. This helped me to switch my emotional gears and to begin to problem-solve.

By examining three areas that are related to communication breakdown, I could begin a step-by-step inventory of the speech behaviors of my communication partners, the features of my technology, and the acoustics of my listening environment. This enabled me to trouble-shoot by sorting through the possibilities, which empowered me to take charge.

My eureka moment arrived as I realized what I think is very likely the culprit. The acoustics of many buildings in New Orleans are impacted by architectural features introduced long before the invention of electric fans and air conditioning. (The average height of ceilings in New Orleans houses is 12 feet, and subflooring and insulation is minimal in many houses.) The result is subtle but constant reverberation.

It was the increased reverberation that made hearing more of a challenge. All the excess echoes added to the background noise and made speech harder to understand. My CI wasn’t failing. My hearing did not get worse. When I was able to take a deep breath and clear my mind of the influx of negative emotions, I was able to systematically and objectively identify the source of my problem.

Important lessons have been re-learned, and I’ve made a list of five things to remember if and when I again think there are changes in my hearing functioning. I hope these tips may be helpful to you as well.

  1. Pay attention to diet, exercise, meditation, and rest. When I take care of the rest of myself, solving problems goes more smoothly.
  2. In trying to determine possible sources of the problem, be patient. Make a list of factors to evaluate, use trial and error to test out each of them, one at a time, and keep notes.
  3. Check with an Advanced Bionics representative, a mentor, and/or audiologist in case of questions about technology.
  4. Talk with a friend who will be supportive and encouraging. (For me, this most recently was a hearing loss peer who served as my cheerleader when we chatted about my external mics, left at home in Boston. With a healthy dose of positive energy, she convinced me to call on someone to mail my external mics to my New Orleans address.)
  5. Prepare for unanticipated glitches. (This means that I should always pack my external mics! I never know when they might come in handy, even when things are going well.)

Hearing again, whether with hearing aids or cochlear implants, is never a simple one-step fix. It requires education and practice, rational problem solving and patience, and use of the incredible technologies available to us. The combination of smart habits of mind and modern hearing devices such as cochlear implants enables us to minimize the impact of hearing loss and live our lives fully – and with a sense of accomplishment!

Peggy Ellertsen
Written by Peggy Ellertsen

Peggy Ellertsen

Peggy Ellertsen is a Speech/Language Pathologist and advocate for people with hearing loss who currently serves with Hearing Loss Association of America’s Advancing Communication Access in Health Care Settings program. A Certified Peer Mentor for Hearing Loss and past member of the HLAA Board of Directors, Peggy lives in Newton, Massachusetts with her husband Bob.

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