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.
Read more: Ending my hearing loss isolation
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.
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.
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?