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First Person

If Heather Conrad wants to be able to hear later in life, she must learn to stop listening

First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguide.

This year, I have started to lose my hearing in a significant way. I've struggled in this process, which, at times, has left me feeling frustrated, isolated and scared. I'm writing this essay to help convince myself this is really happening. Also to tell others what it is like to lose your hearing. People need to be told because hearing loss is an invisible disability.

I was first diagnosed with significant hearing loss in my left ear when I was 12. The problem stemmed from nerve damage secondary to measles. I was told then and for many years after that a hearing aid would not be helpful. Today that would not be the recommendation. Today, a hearing aid is almost always advised, to enhance the hearing of the damaged ear but also to support the good ear.

In school, I was moved to the front, left side of the class and my marks increased from 60 per cent to 92 per cent. I had been missing 30 per cent of what was said. There were social implications to this disability as well, all of them invisible. For instance, when someone behind me wanted to pass a note, as was done in those days, I didn't hear the "psst, psst." I'm sure I looked like a goody-two-shoes and not so promising as a friend. All this was unknown to me. It was only many years later, when I explored what it meant to be hard of hearing as a child, that I realized the impact. It was like opening a door to all I had missed, academically and socially. Maybe the reason I can't do math is that I just couldn't hear the lessons in those early years.

Despite hearing loss, I've managed well, gotten a university degree, became a nurse, engaged in meaningful work, developed friendships and nurtured a wonderful daughter. All done using, almost exclusively, my right ear. Then in 2004, the hearing started to fail in that right ear. Sounds became distorted and speech difficult to understand. It was very frightening. I was diagnosed with Meniere's disease, an umbrella term for conditions of the inner ear. Most notably, people with Meniere's suffer debilitating vertigo. Fortunately that is not my problem. I have a staggered gait periodically but no vertigo. Hearing loss is my bane.

I was furious when the doctor told me I had nerve damage. I was similarly angry when the audiologist said the same. The last time I was told this, I was told that there was nothing to be done. I would remain deaf. However, this time, they offered me a hearing aid. And although it comes with its own frustrations, I wish I had been offered one all those years ago. Perhaps it could have protected my good ear from the wear and tear of having to do all the hearing for so long. A hearing aid can only amplify sound. It doesn't make it clearer. It amplifies all the sound, so the clatter of cutlery and paper napkins can overcome the sounds of conversation. Only the conversation is important. Nothing else. That is what I have learned.

A homeopath was recommended. She gave me a remedy that improved my hearing. I didn't need the hearing aid. This treatment lasted about four years and then stopped working. She had nothing else to offer. Eventually I tried acupuncture from a Chinese Medicine doctor. He has treated me off and on for many years, making my hearing clear and strong. The periods of remission last about two years. The treatments are not working as well now.

Helen Keller said with blindness, you lose the world; with deafness, you lose people. That is the scariest part of being deaf. It is so tempting to not try, to stay by myself. When my hearing is bad, I'm more comfortable alone. Struggling to hear can be exhausting, especially if there is more than one person present. I can become confused, feel less alert and uncertain. Isolation is a common consequence of deafness. Loneliness, depression and even greater risk of dementia can result. I don't want any of that, but in my most troubled times, I feel I don't know how to live as a deaf person. I had wanted to spend time volunteering, perhaps bereavement support or visiting with people with dementia. I'm not sure I can do that now. So I deliver Meals on Wheels. It makes me laugh to see how much those few hours of doing for others makes me happy. I need to find more I can do. But what can you do that doesn't require hearing?

Until I can answer that question, the losses feel huge. I had to quit work sooner than I wanted. I had to give up my singing lessons, even listening to music because it sounds so flat and distorted. Film used to be my love, but not now. I've been told if I want to be able to hear till I'm 90, I need to listen less. Reluctantly I have to admit I understand that. I can feel my hearing worsen, the longer I listen. Now my priority is to reserve my listening for conversations.

When I first got the hearing aid, I wanted one so small no one would see it. Now that seems so funny. If you are hard of hearing you need to tell people. Otherwise they can misunderstand your non-responsiveness as indifference or even rudeness. They need to make accommodations if they want you to hear them, such as facing you when speaking, hands away from mouth. They need not to talk while leaving the room. Why does everyone do that? While I feel self-conscious about my deafness, I find people are wonderful when they know. They do try to accommodate. They are generous and sympathetic. They are not judgmental. The people in my life shore me up when I feel most vulnerable just by their acceptance.

This is the road I'm on, whether I want it or not. There is a lot of uncertainty. How deaf will I become? How will I cope? What more will I lose of the life I have known? Becoming deaf is very challenging. It can't be done alone.

Heather Conrad lives in Toronto.