My hearing loss is genetic, as is the stigma I inherited from my father. When I had my own kids, I knew it was time to break the cycle.
I grew up thinking hearing loss was shameful; something to be hidden and never discussed. I learned this from my father, who had hearing loss. So did his mother. It was genetic, and he passed it onto me, along with the stigma. I needed to accept my hearing loss to break the cycle for my children.
“Don’t worry,” my mother would say with a dismissive wave of her hand as my sister and I would glance over at my father, “he can’t hear us.” As young children, we thought this was mean, but didn’t dwell on it, preferring to continue our “secret” talks with our mother. We learned to exclude my father because of his hearing loss and to use his issue to our advantage in plotting shopping trips or the like. Thinking back on it, I am appalled.
My father had a hard time coping with his hearing loss, which began in adulthood. He was embarrassed by it and hid his hearing aids behind sideburns grown long for that purpose. This looked fine in the 1970s, but a bit odd as hairstyles changed with the times.
He never mentioned his hearing loss within the family unit, at work or with friends. He never asked us to speak louder or to be sure to face him when we talked to him so he could hear us better. He never rearranged the seating at dinner or at a social event so he could participate. His fear of discovery guided his choices, and overtime he became increasingly isolated from us all.
It was not entirely his fault. My family was obviously not supportive of him, but by keeping his hearing loss a secret, he also alienated co-workers and friends. His career stalled, my parents stopped entertaining and their marriage deteriorated.
So when I first suspected that I was losing my hearing, I was horrified. I chose to ignore it and bluff my way through situations where I couldn’t hear, following in my father’s footsteps. At some point, I broke down and purchased hearing aids, but I rarely wore them, and if I did, they were hidden away behind my long hair. I was always afraid that someone would discover my charade.
This continued for a decade, with only my husband and one or two close friends in on the secret. I started to need my hearing aids more and more, but I still only wore them at work and never socially. I became skilled at emulating the expressions of friends to give the impression that I was following the conversation. I missed many punch lines of jokes, but laughed nonetheless.
It was exhausting and I started to avoid certain friends and work colleagues who I could not hear well. The stigma of hearing loss was firmly ingrained in my mind. I lived in fear of discovery. But once I had children, I realized that I needed to make a change. I did not want my children to make the same mistakes that I was making.
Because my hearing loss is genetic, I may have passed it onto them. I saw my children watching me sneak my hearing aids in and out and pretending to follow a conversation when I did not. I was passing on the stigma and shame and I knew this had to stop. I needed to come out of my hearing loss closet. So I did.
I joined the board of Hearing Health Foundation and later Hearing Loss Association of America (HLAA). When my friends and colleagues asked me why I was involved with these organizations, I would tell them about my hearing loss. In most cases, people would respond by telling me about their own trouble hearing, or that a relative or close friend had hearing issues. This should not have been too surprising since there are 50 million of us in the U.S. alone, but I was amazed. Why had I been so afraid?
It got easier and easier to admit. I began asking for quiet tables at restaurants and mentioning my hearing loss at the start of a meeting to make sure I had an advantageous seat. I even started a blog called LivingWithHearingLoss.com to share my experiences with hearing loss and to inspire others to live more comfortably with their own hearing loss. What a relief it has been to be out in the open.
My children have noticed the change. They discuss my hearing loss openly, helping me find the best seat at the dinner table so I can hear, and watch TV with captions without complaint. They participate in the annual HLAA Walk4Hearing and wear earplugs to protect their own hearing at loud events. I don’t feel excluded from the family unit because of my hearing loss. It is just part of the regular family dynamic.
I hope my children will not have trouble hearing, but if they do, I know they will approach it with a better attitude and a more complete toolkit for surviving and thriving than I did. I am grateful for their inspiration in finding my way out of my own feelings of stigma and shame. It was the least I could do for them.