For the first four decades of my life, I was alone with my hearing loss. I didn’t know anyone else who was ‘hard of hearing’ except, when I was young, my 90-odd-years-old great-grandmother, Bonnie.
Bonnie’s hearing loss was probably age-related. But back then, I didn’t know or care what caused it; I was only a kid and she could be embarrassing! She had a voice like a foghorn – even her whispering came out as loud. Because she couldn’t follow the conversation around the kitchen table, she spoke up frequently to find out what everyone was talking about and to share whatever entered her mind. The family would answer in equally loud voices, loving her and ignoring her occasional politically incorrect bellowed rants. She had never met a person of colour and anyone not a Presbyterian who dared to visit the farmhouse, got her unrelenting stink-eye. In her tenth decade, she was still strong as a female ox with only two health issues: moderate hearing loss and a tinge of dementia.
Hers had been a long and often heartbreaking life. By this point, her husband had been dead over 50 years, two of her three children had passed away, and even her first two grandsons were long gone, young, handsome fighter pilots who didn’t make it home from WWII. As a little girl, I loved to hear Bonnie tell stories about our family history. No one else had the patience to sit with her for long, but it was easy for me, because I had no problem hearing and understanding my great-grandmother’s brass gong voice. But her hearing loss also scared me; I worried that I would also become a loud old lady about whom people fondly chuckled, rolling their eyes at my senile mutterings. So far, so good. (I think.)
Growing up, my obligatory, annual hearing tests showed a steady decline until, in my early 30s, my hearing loss appeared to have plateaued. This turned out to be a temporary glitch in the determined decline of my hearing. At age 40, circumstances caused me to reach out for additional help beyond what my hearing professionals had been providing – and which always focused solely on the almighty hearing aid.
I was pregnant and I needed to talk to someone who had been here and done this – become a mother with hearing loss who could keep her baby safe. At a life altering hearing loss event, I met my first hearing loss hero, Cindy Gordon. This woman sat down with me, her youngest baby in her arms, and told me I could do this. There would be fearsome moments, yes, but every mother has them. I never looked back after that amazing half hour with Cindy. My baby survived my hearing loss and I found a new passion – hearing loss advocacy.
From the start of my hearing loss ‘career’, I realized that hard of hearing people remained isolated as individuals and as a group. This was in the mid-90s and there was little in the way of public access for people with hearing loss. At the same time, however, assistive technology was starting to boom, and would help bring us into a modern era of better communication and better participation in society. But we still needed to find the words to help ourselves in our everyday moments, to describe our needs and be successful in having them met.
That’s what I’ve devoted 25 years to doing – writing, speaking and performing the words that describe us, and I’m just one of a worldwide legion of amazing hearing health advocates who are making miracles happen. But personal success with hearing loss can still only be measured person by person. Hearing loss only becomes intensely important to a person when they themselves acquire it. No matter how much you believe you understand the issues and the solutions, it only becomes real when you yourself join the ranks of those with hearing loss. That’s when you need help, not only from a hearing professional – but from another person like you.
I said that Cindy Gordon was my first hearing loss hero, but she’s actually my second. My Bonnie was my first. I loved her as my ‘kin’, as she would say and it’s only now that I realize how brutal the blow of severe hearing loss must have been in a time with no technical or professional supports and precious little understanding from other people. I cringe to remember how we laughed at her, even while she was beaming at us because we all seemed so happy.
I know now that her untreated hearing loss probably contributed to her dementia. She would have refused a hearing aid; even if she could have afforded it, she was a country woman who pooh-poohed spending money for something she felt she didn’t need. (But she fought for what was necessary; one year she lived on porridge so that her youngest daughter could attend college.)
I wish I could reach back in time and help my Bonnie hear better. I can’t – so this love letter to her, decades-late, will have to do. It’s partly because of her that I, along with my advocate colleagues, work hard so that others can learn to live well with hearing loss.