“The healing power of even the most microscopic exchange with someone who knows in a flash precisely what you’re talking about because they experienced that thing too, cannot be overestimated.” ― Cheryl Strayed, Tiny Beautiful Things
“Come and sit here by me,” barked my great-grandmother Bonnie. “I can’t hear you that far away.”
Until I was much older, my Bonnie was the only other person I knew who had hearing loss. At the time, I couldn’t relate my hearing loss to hers – she was in her 90’s and I was only 10! Our bond was one of family, not hearing loss. But I did learn a few things from her – if you have hearing loss, you’ll have a voice like a foghorn and you’ll say inappropriate things and the family will roar laughing at you. She didn’t understand why they were laughing, but was pleased to see her kin so happy.
Growing up, I learned about living with hearing loss through parental guidance and from hearing care professionals who showed me how to wear hearing aids; the rest I figured out on my own and I got by. But when I finally met other people with hearing loss, the lights went on, fireworks exploded, angels danced. It was like falling in love – but with a group of people, with a new awareness and with a new me.
Recently, I asked a few friends – what was it like connecting with another person with hearing loss for the first time?
Ray Wathen: My wife, Teri, was the first person I related to in terms of difficulty with hearing. On our third date, I went to nibble on her ear lobe but, instead, bit down on her hearing aid. Because I had some hearing loss myself, not only was this not a turn-off, it may be one of the reasons we’ve been together for 42 years.
Teri Wathen (referring to someone other than her husband, Ray): OMG, it was blissful. Finally, someone really, really, truly understands and feels and knows what I’m going through. Instant connection! Instant camaraderie! Instant friend!
Cindy Gordon: Life changing. When I attended my first CHHA conference, I had the immediate sense of belonging. I fit in! For the first time I realized that someone else shared my feelings; I was not alone or crazy. I didn’t need to explain my hearing loss, it was completely understood. I feel the same, even today, at conferences.
Carole Willans: When I met Marilyn Dahl, a person with a profound hearing loss much like my own, I woke up to the fact you can be a hard of hearing woman, yet that does not have to define you. What defines you is what you do, and Marilyn taught me I could be of great service to others like me because I knew what it is like to live with hearing loss. This has helped me to rebuild my self-esteem and to experience a better quality of life personally, in my community of family and friends, in my workplace, in every aspect of my daily life.
Myrtle Barrett: This is the story of another person, which I’ve never forgotten because it mirrored my own experience. I was in a lineup at Tim Hortons, picking up supper after a long day. I gave the girl my order – and I kept on telling her, because she didn’t understand me. Finally I asked, “What am I doing wrong!” She filled up, turned red and said, “It’s not you, I have a hearing loss!” A co-worker helped her get my order, and I decided to eat in – because I needed to talk to her.
When she wasn’t busy, I apologized for my impatience and asked if she would like to talk when she finished work. I told her I was deaf. Her face lit up. She was only 16 years old and we talked for a long time. Her boss didn’t know, and she was afraid to lose her job. I gave her some suggestions about workplace accommodations and about our local support group. She joined the youth group and became a great advocate. Most importantly, she became empowered and successful – all because of a chance meeting with someone who was just like her.
There is a stunning sense of relief in connecting with another person who has felt the shock of hearing loss, a condition that spits nails into your self-esteem because you get things wrong, again and again, pulling laughs or sighs from family, and that causes an inner stab of shame and an outer show of denial, sparking another round of irritation…..and round and round it goes.
Such a connection, however brief, is a golden thread that can restore the self-dignity a person with hearing loss needs to move forward. It can be casual and unexpected, as in Myrtle’s story, or through a social media group. Or, it can be proactive reach-out to a consumer association such as HLAA or CHHA. Every person, if possible, should go to a live meeting, even if just once, to connect with real people who are walking, talking demonstrations of communication success. They might be the inspiration to throw off the invisible cloak of shame you may have been wearing.
When I went to my first hearing loss conference, I wore that shame-cloak, and it was heavy because of an unconscious desire to distance myself from the people I was going to meet. As Groucho Marx said, “I don’t want to belong to any club that will accept people like me as a member.” Deep down, I was thinking, “Do I really want to associate with a bunch of hard of hearing people? Other people will think I’m like them, disabled or something.”
I’d arrived too early, and as I stood waiting nervously in the almost empty lobby, an energetic, good-looking guy of my generation approached and asked if I was attending the hard of hearing conference, as it was his first one. We went for coffee and as I chatted with my new friend Paul, I started to feel excited about what I was doing. Two amazing days later, a few of us celebrated at a pub after the closing banquet. Almost nothing on this earth is louder than a dozen hard of hearing and oral deaf people having drinks. I was a bit embarrassed by the stares we were drawing from the other, presumably hearing, bar patrons. And then it happened.
So what if we were loud? We had hearing loss, yes, and we were also smart, happy and enlightened. It was a life-changing aha moment. Rocky Stone, founder of Self Help for Hard of Hearing People, once said, “You can’t change the world. You can change yourself and improve your immediate area with the spirit of love and concern for other people.”
And that’s the golden thread…..
I was late for a classical language class at The Ohio State University. I knew I had to sit up front to hear the professor. There were no accommodations for people with hearing loss in the 50’s. I had seen a brief case sitting on a chair in the front row. I ask that person is anyone sitting here and this person took his briefcase off the chair. This is how I met my husband. For some strange reason he had placed his briefcase on the chair instead of the floor. I guess fate would say, “He was saving that seat for me.”
‘Affiliation’ is a basic human need. People with hearing loss often feel left out and as if they don’t belong. Enter organizations like CHAA and HLAA. The first time I felt any kind of affiliation relative to my hearing loss was in 1984 at the first convention of SHHH (now called HLAA). It took courage to attend that convention because I had no idea what it would be like. I was young. All the people I knew with hearing loss were old. What was I doing? I vividly remember walking into that Chicago hotel lobby and seeing this ‘sea of hearing aids’! I had no idea there were so many of us, and so many who were people my age! For 4 wonderful days we talked, laughed, cried and talked some more. I slept for a week after I returned home because I hadn’t slept much during that convention. We were all too ‘wired’ to sleep so we hung out in the lobby and shared our stories. It was amazing. People with hearing loss…especially those who are, by nature, outgoing but feel sequestered due to hearing loss, should get in touch with CHHA or HLAA. Attend a meeting in person. (Internet discussion doesn’t count!) It will lighten one’s load in a way that’s hard to explain.
The first time I read posts in “The Say What Club” listserv, I began to cry. I wasn’t nuts. It wasn’t just me. And it was ok to be hurt and embarrassed at the oopses and the misunderstandings, and it was even better to keep getting back into the game and moving on.
Thank you for your column – that golden thread is sure important.