Guest Post by Katherine Bouton.
People often ask me what hearing loss feels like. I tell them I can only describe what my hearing loss is like. We all experience hearing loss differently, depending on the degree and nature of the loss; the kind of correction we have, the kind of person we are, the relative difficulty of the challenges in our daily hearing environment.
When I’m with a friend or family member in a quiet place, my hearing loss seems negligible. When I’m with that friend or family member in a restaurant – or even at my own dinner table with five other people – my hearing loss seems overwhelming. I can follow very little of what’s said. When I worked in an office, hearing loss dominated my every waking moment. Now that I work at home, it’s less of an issue.
My hearing loss, like most people’s, is actually two different things. Without my hearing aid and implant, I don’t hear much. I might hear that someone is talking, but not what they’re talking about. I might hear a fire engine going by, but it could be the television in the other room.
My hearing loss without any correction is primarily peaceful. I’m very lucky not to have tinnitus, because the silence is indeed silent. The cover of my book “Shouting Won’t Help” describes perfectly how that uncorrected hearing sounds. Cut off from the world, but not stressing about it.
But when I put on my hearing aid and implant, the sudden noise even in a quiet room is enough to make me jump. Both devices seem to come on at a higher decibel level than I need and then adjust themselves. That means there’s a brief flash of loud sound, which is even worse if I’ve accidentally turned the volume up before I put the device in.
Neither instrument is good at regulating background noise, the bane of every hearing aid wearer. Think how often you’ve seen someone take out their hearing aid in a noisy restaurant, because the din is overwhelming. Doing what the ear does naturally – filtering out unwanted sound – has so far stymied the acousticians and manufacturers of hearing aids and cochlear implants.
Still, when it’s quiet, my instruments allow me to hear birds chirping, a stream gurgling, a friend talking. And I’m getting better at hearing all the time. A year ago, my son called on the phone. I had no idea who he was. He kept saying, “It’s Will.” I kept saying “You want to talk to Will? He isn’t here.” Now I would at least know who was calling, if not what he was saying.
I’ve had serious hearing loss for a little more than a decade, but I first lost my hearing in my left ear when I was 30, in 1978. I spent years in denial – my hearing isn’t that bad, I don’t need a hearing aid. I could hear with my right ear and that seemed sufficient.
My hearing loss, of unknown origin, went through periodic unexpected drops. My hypothesis is that the drops were connected to periods of stress, when my immune system was compromised. If the hearing loss is caused by a virus – one possibility – that virus would have a chance to get the upper hand under stress, and I’d lose another 10 decibels of hearing.
In 2002, my hearing had gotten so bad that I had no choice but to get hearing aids. I got two. The one in the left ear merely provided balance – no real sound. But the one in the right ear worked well for me for about three years. During that period, when I was once again tested for everything, the doctor still had no diagnosis. Ever optimistic – ever in denial – I continued to believe that someone would find the cause, would reverse the progression. I began researching hearing loss myself, delving into my health history hoping for a clue.
I continued to work but I communicated by email whenever I could. I didn’t participate in meetings. I saw as few people as possible. And of course there was anger. Anger at my hearing, anger at my colleagues at work, anger at my husband. I was short with my kids, estranged from my friends. I was angry with the hearing aid industry for not coming up with better products, at my audiologist for not being able to make me hear again. At science, at the world.
The following year I got a cochlear implant – but mine was not a joyful eureka moment. All that negative stress made it hard to adjust to the implant.
Shortly after that, I left my job. Despite the implant and hearing aid, I couldn’t do the work I loved and I wasn’t interested in doing the work offered as a substitute. In January of 2010, I was out of work. I was deaf. Rock bottom. The only way to go was up. Anger helped, surprisingly.
Anger was my original incentive for writing “Shouting Won’t Help.” I’d show them, I thought. Not a good premise for a book. Luckily, I moved on.
I spent two years reporting the book. It’s a memoir in part, but it is also an exploration into the science of hearing loss and the possibility of regeneration of hair cells, into the hearing aid and cochlear implant industries, and into noise and the damage it does. I wanted to write a reported book because there were so many facts I wanted to know. I figured if I wanted to know them, others would too. There were no books out at that time about the practical aspects of mid-life hearing loss.
These days I accept that hearing loss is part of who I am. I’m no longer pretending I can hear; I’m no longer living a lie. Because I write and speak about hearing loss, it’s a big part of who I am. But it’s by choice. I own my hearing loss. It doesn’t own me.
That doesn’t mean that I don’t have occasional fits of what the blogger Gael Hannan calls “ear rage”. Hearing loss is always there, and sometimes it ambushes you. The anger you feel in response seems out of proportion to the event, but that’s because even as you’ve seemingly been doing okay, that anger – and its concomitant depression and anxiety – has been simmering. Every once in while it reaches the boiling point.
New York-based writer Katherine Bouton is the author of “Shouting Won’t Help: Why I – and 50 Million Other Americans – Can’t Hear You” and the What I Hear blog on Psychology Today. She is a former editor and writer at The New York Times.
Elevating Sound warmly recommends Katherine Bouton’s book “Shouting Won’t Help: Why I – and 50 Million Other Americans – Can’t Hear You”.
Hearing loss is a hidden disability and there is a pressing need to close the empathy gap in society in order to better understand and support the people who experience and live with hearing loss and other hearing-related conditions, such as tinnitus and hyperacusis.
This is an important and gratifying read for people experiencing hearing loss and who are currently going through Elisabeth Kübler-Ross’s five stages of grief: denial, anger, bargaining, depression and acceptance. Likewise, it is an essential read for friends and family members of people living with hearing loss. The book will expand your mind and enable you to better understand what it means to be living with hearing loss via the personal memoir of Katherine Bouton as well as the persons she interviewed for the book. As more people learn about the depths of this invisible disability, they will be able to help and encourage those experiencing hearing loss to find their way to personal acceptance.
The premise of the book as told by Katherine Bouton:
“There are many books about deafness, but very few about going deaf. The difference is profound. To lose your hearing, someone once said, is to lose part of your self.
I know. I’ve been there. “Shouting Won’t Help” shares my experience. I began to lose my hearing when I was 30, from unknown causes. The loss was progressive and by the time I was 60 I was profoundly deaf in one ear, and with severe loss in the other.
When I started thinking about this book, I had been struggling with increasingly severe hearing loss for much of a decade. I was depressed, angry, stalled in my work, isolated from my family and friends. My reaction was in no way unique.
Hearing loss is a hidden disability, one often borne in secret. It affects friendships, family, and professional lives. Many people have told me their stories. In the book, I share theirs along with my own, in the hope that others will come to see that there is a path to acceptance, a way to return to life. Life after deaf.
Forty-eight million Americans have some degree of hearing loss—17 per-cent of the population. If you’re among them, or if you’re married to someone with hearing loss, or if you’re a friend, a colleague, a relative, this book may help in coming to that elusive state of acceptance. The first step, acknowledgment, is a major one — major both in effort and reward. I hope this book will help you find your way there.”