What I’ve learned from living with hearing loss for 40 years

What do you have to look forward to when you get diagnosed with a hearing loss? How will your life change?What can you expect while living with hearing loss?

These may sound like silly questions today. But consider them 40 years ago when I was diagnosed with bilateral hearing loss. I wasn’t looking forward to anything.

In fact, I was quite sure that when I was diagnosed, at age 29, my life was over. I had become an old man, or rather one with an old man’s condition.

The only expectations I had for my future with hearing loss was dealing with relentless tinnitus and a lifetime of hearing much less than I wanted to. I also believed my successful music career had ended forever.

“I also believed my successful music career had ended forever.”

Forty years ago, I did not know who to turn to for guidance above and beyond the medical and technological. Back then, those solutions were limited. If other kinds of help existed, I wasn’t aware of it, as it wasn’t advertised or promoted then.

No one in my family or group of friends had a hearing loss so my experience was more than limited. Much of my time was spent hiding and keeping my condition quiet, especially to my colleagues in the music business. I figured somehow I would get along, get a job, and never look back.

Read more: Finding Community in the D/deaf World 

However, over those 40+ (often painful years), I did learn many things about hearing loss and about myself – not all of them good, but I did learn things that would eventually help me move forward.

The greater tragedy for me is that I learned these useful things years after my loss occurred. This stunted my personal and professional growth and momentum, limited my acceptance of my disability, and slowed my reaching out for resources and opportunities that might have always been right there in front of me.

5 Things I Wish I had Known about Hearing Loss:

1. My hearing loss does not define or limit me. Look around. About one in five American adults have a hearing loss, according to the Hearing Loss Association of America. It’s not some deep dark secret anymore so you don’t have to hide. Hearing loss is out of the closet and most of us know someone with a hearing loss.
2. Your dreams do not have to die. You’ll find successful people in every walk of life with hearing loss from professional athletes, musicians and entertainment celebrities, academics, and government officials to your neighbor next door.
3. Don’t wait for a miracle to happen. There are no miracles except those that you create with your own awareness and effort. The miracle of making music again happened for me when I upgraded my hearing aid, improved my nutrition, got involved in hearing rehabilitation, and continued my vocal training. In other words, I did the work.
4. A better life with hearing loss demands that you make adjustments all along the way. For a long while I thought “What adjustments?” Eventually, I made them. Some I waited to make, others I made willingly, and still others cost me time, money and happiness because I failed to make them.
5. You don’t have to feel isolated with a hearing loss. How you live your life is a choice you make. Continue  your healthy relationships and engage others who can relate to you, and help you when you need it. Be proactive and connect with the larger hearing loss world and all it has to offer.

Read more: Ending my hearing loss isolation

The Good News

Unlike 40 years ago, everything you need to feel better and connected is out there: promising research and treatments, exciting advances in hearing technology, tools and toys, and greater communication access in many public places.

Read more: Why I finally decided my dad needs hearing aids 

There is also an extensive and accessible hearing loss population sharing information and making connections via public, private and consumer organizations, clubs and social events. Magazines, blogs, and forums in print and online are also good resources. So yes, it is getting better. Being engaged can lessen the sting of isolation and any lingering stigma about your hearing loss that you or others may still harbor.

Living with hearing loss: How I changed my life

In 1978, I began the downward spiral with sudden sensorineural hearing loss (SSNH). In 1979, (yes, just one year later) the Hearing Loss Association of America (called “Self Help for Hard of Hearing” at that time) began operations. Over its own 40-year history it has become the premier consumer organization in the US for those with hearing loss. Nevertheless, It took me 35 years before I discovered the HLAA. It’s painful to think what I missed that might have made my life more manageable.

Today, I am a four-year member and convention goer. I participate in and present workshops to local and regional HLAA chapters. I am also a member of the Association of Adult Musicians with Hearing Loss, another link through the hearing loss community.

Since 2013, I’ve done a lot of other things for myself that I should have done much sooner. I’ve stayed current with my hearing aids and visit my audiologist regularly. I now wear special ear monitors for use in the recording studio and on stage and write articles for HearingLikeMe and other blogs and magazines. I became a hearing advocate and activist in my neck of the woods. I’m performing live again and recorded my first songs in more than 40 years.

So yes, my dreams haven’t died, they’re just 40 years late. In my advice, don’t wait to get a hearing test. Wear a hearing aid as soon as you need one, then connect with the hearing loss population and get back in the game.

Take it from me, these connections will save your life and help you manage your hearing loss more successfully today and in the years ahead.

What have you learned about managing life with hearing loss?

• Author Details

Author Details

Stu Nunnery

Stu Nunnery is a professional writer, musician, composer, actor and activist. In 2013 he began a years-long journey to return to making music after a bilateral hearing loss ended a successful career forty-five years ago. Taking advantage of cutting-edge technology, auditory training and vocal work, he resumed performing in 2017 and made his first new recording in 2018. Recently, Stu also completed a screenplay about his musical journey. A graduate of Princeton University, Stu has studied piano, voice, acting, improvisation and public speaking. He is a member of the Association of Adult Musicians with Hearing Loss, and for his activism, is a Phonak “hEARo” and a “HearStrong Champion.”