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The Sounds of Silence

The Sounds of Silence

Confronting the frightening reality of a hearing impairment.

by

When I was expecting my seventh child, I lost my hearing.

Not all of it, and not right away.

At first it was only my left ear. A few weeks later I noticed that the hearing in my right ear wasn't what it had been before. I could no longer carry on conversations from across a room. I no longer heard my children if they cried out in the night (I was sleeping better, though!), and I startled very easily, because I never heard anyone coming until they were right next to me. I also found myself saying "excuse me?" and "I'm sorry? I didn't hear you" very often.

It was too obvious to ignore; I was definitely losing my hearing.

At first my doctor blamed it on a sinus infection. "Don't worry," he assured me, "as soon as the infection clears up, your hearing will be restored."

I felt in my gut that he was wrong, but his diagnosis appealed to me and my ostrich-like tendencies. A nice, temporary reason that legitimized my chosen course of action; ignore it and it will go away.

But months later when the sinus infection was a thing of the past, the hearing loss remained in the present.

I continued to bury my head in the sand. I was not emotionally ready to deal with the issue.

One would assume that at that point, given my relatively young age (31), and the importance of the sense of hearing, I would leave no stone unturned to discover the cause of my hearing loss and a way to reverse it. Instead, I continued to bury my head in the sand, rather than confront the frightening reality of a hearing impairment. This was an illogical response, and I knew that intellectually. But I was not emotionally ready to deal with the issue.

So I compensated as best as I could. If someone was talking to me from another room or across the street, I would just wait until I got closer, and then they would usually repeat themselves. My children learned that if they wanted to be heard, they needed to be in close proximity, preferably facing me. And definitely only one at a time!

This worked well enough that I was almost able to pretend that I didn't really have an impairment.

Almost.

It was about a year later when I noticed that my hearing had deteriorated further that I knew I could no longer ignore it.

Even though I knew what to expect, it was still quite a blow when the audiologist confirmed my hearing loss.

A trip to an incredibly expensive ENT in Manhattan did nothing to soften the blow. His diagnosis: otosclerosis, an abnormal bone growth in the inner ear which anchors the stapes (one of the tiny bones of the inner ear). This condition usually causes a conductive hearing loss, but in rarer cases (of which I am one) it results in nerve damage as well, causing what's called a "mixed" hearing loss (both conductive and sensorineural).

The only conventional treatment option for otosclerosis is a stapedectomy -- a surgery in which the stapes is removed together with the extra bone and replaced with a prosthetic stapes. This surgery is nothing more than a stop-gap method since it does nothing to prevent further abnormal bone growth. The need for multiple stapedectomies is quite common. A stapedectomy, when successful, will only reverse a conductive hearing loss; it does nothing to reverse a sensorineural loss. And there is a presumed hormonal link, so as long as I am still planning on having more children, I would not be considered a candidate for this surgery.

The surgery is not without risk, of course. A small percentage of patients (between one and three percent) lose their hearing altogether. Irreversibly.

For a variety of reasons, surgery was not for me. The doctor recommended hearing aids.

Although I had been prepared by the audiologist to expect a recommendation for an augmentative device, I was devastated. Wearing hearing aids requires acceptance of this hearing impairment as my new reality, and I am not ready to do that. I don't know how I managed to drive myself home, I was crying so hard.

The most alarming aspect for me is that I'm only 32. How much residual hearing will I have when I'm 60? Forget 60, I'm worried about 35! How can I move my baby's crib out of my room -- I won't hear him when he cries! Yes, I probably will get a hearing aid, but this hearing loss of mine is progressive. And a hearing aid is only an augmentative device. At some point, there isn't enough hearing left for amplification. My hearing has deteriorated so dramatically in just two years. At this rate of progression.....I don't even want to think about it.

The ramifications of a hearing impairment are huge. Aside from the obvious practical effects, the emotional toll is, as I've said, devastating. I've begun avoiding social situations. The feelings of isolation when I can't follow a conversation, the embarrassment of asking people to repeat themselves over and over, it's all become too painful. When I have no choice, and must attend a social gathering, I just smile and hope that I don't look as lost as I feel. Every PTA, every visit to the pediatrician, necessitates my informing the teacher/doctor of my impairment so that they will speak loudly enough for me to hear them.

I also have to make an effort not to get upset with my husband, children, and friends who are aware of my hearing loss, for not speaking loudly enough for me to hear them well. I remember how my grandfather, of blessed memory, used to complain about how softly everyone spoke. At the time I couldn't understand how he could put the responsibility for his difficulty hearing onto others. How well I understand him now! After all, MY voice still sounds the same to me!

Although the room is full of people, I may as well be all alone.

It hurts to be in a room with conversation flowing all around me. I can hear the hum of voices, I can hear four out of five words even, but it's just not enough, not enough to join in. Although the room is full of people, I may as well be all alone. And it hurts, oh how it hurts, to have to ask your child to repeat themselves so many times that they shrug their shoulders and say, "Forget it!"

I now know how truly precious the sounds of my life are, and I will do everything I can to make sure that the sounds left to me are pleasant ones. I'll listen to my loved ones -- really listen, with all of my attention, the way we all want to be listened to. And I will take care not to poison the world with forbidden speech -- no hurtful words, no raised voices, no gossip or slander. And of course, to thank God for all of the sounds that I can still enjoy, especially the sweet sounds of my children's voices. To focus on what I have, not what I'm losing.

If I can manage to do all that, then I think I will have gained something greater than what I've lost.

Postscript: Writing this has helped me gain the clarity I needed to put my loss into perspective and find the strength and courage I need to accept God's plan for me. I got my hearing aids 10 months ago. Choosing the type of hearing aid I wanted, getting used to them, and tweaking them to meet my needs has been a surprisingly difficult process. I don't think I'll ever be completely finished.

I'm happy that I finally reached a place where I am able to accept my new reality and help myself, and I do enjoy hearing the small sounds of the world that I had forgotten about.

The pain of my loss still crops up unexpectedly. When my battery died on the first day of a three-day yom tov, when I have whistling "feedback" audible to those around me, when I attend a public lecture or class and I can't hear the questions being asked. Unlike eyeglasses which provide the wearer with normal vision, hearing aids do not restore normal hearing. Each time I come up against a new situation that is impacted by my hearing loss, I have to repeat the mourning process.

But I have established an emotional equilibrium for myself, and it doesn't take me as long to accept these new situations and to integrate them into the fiber of my life. As difficult as it may be to live with my disability, I thank God that the technology exists to help me function well, despite my impairment.

A version of this article originally appeared in Horizons Magazine.

Published: July 19, 2009


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Visitor Comments: 33

(33) Anonymous, September 13, 2010 3:28 AM

As I read your article my eyes filled with tears! I too,am 29 and have just had a stapendectomy. I know how alienating the social gatherings can be and the feelings of just having to keep quiet because I missed half the conversation. I really admire you for strenghth and out look on your situation, I thought I was alone but apparently its more common than i thought.

(32) Lois Bernzweig, July 26, 2009 5:36 AM

I Totally Relate

Dassi, I too have a hearing loss that was progressive. I too also saw Dr. Lippy here in Ohio and I do recommend him. Although I do not have the same hearing loss situation as you and I am not sure it will work for you but I was implanted with a cochlear implant 2 years ago here in Cleveland, OH with Dr. Cliff Megearian. I don't know what I would do without it. I now can hear as I always did before. I know the feeling of being lost in group of conversation that you cannot participate. I always felt stupid and uninvolved. I faked tons of conversation. But having the implant was a miracle for me. If I can help you in anyway please do not hesitate to contact me at beartdy36@aol.com. My implant saved my life and if you are a candidate I strongly suggest it. The surgery was very easy. I hope I can help you. Lois

(31) Gemma, July 23, 2009 10:06 AM

Wow - thank you for a great article. It is very inspiring to read your postscript, to learn how you are coming to terms with the challenge Hashem has sent you. I found this sentence especially meaningful: 'But I have established an emotional equilibrium for myself, and it doesn't take me as long to accept these new situations and integrate them into the fiber of my life'. This is an idea that brings hope to everyone, regardless of their specific challenge: just the knowledge that life is a process, problems don't affect us in the same way from day to day, but rather, with effort, we learn how to deal with them and become masters of adjustment. Thank you once again for your heartfelt insights.

(30) , July 23, 2009 8:39 AM

Info for the single woman who suffers from hearing loss: Sos Tassis

"Sos Tassis" is an organization devoted to helping singles with physical and medical challenges find shidduchim. I don't know if there is a branch in the USA, but call the Israel office and find out. Their phone # is 011-9722-538-2076.

(29) Tamara, July 23, 2009 7:56 AM

Same boat

Why is it that people are ashamed to wear hearing aids? Why is it that we feel like we should be superpeople and any imperfection is an embarrassment? I suffer from both hearing loss AND vision issues (now I'm 43) and a hearing aid won't really help my case. This definitely effects me at weddings or noisy social situations (and I've even walked by close friends in the street!!). My friends know and basically understand. There are support groups and there is usually much to be gained through them. Good luck! and you are NOT ALONE!

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