Category Archives: Sharing Your Stories

Wired for Sound: a memoir of deafness and cochlear implants

I first met Beverly Biderman about 25 years ago while executive director of VOICE for Hearing Impaired Children. As an early recipient of cochlear implants, she has been an inspiration for me. She wrote a book about her experiences a number of years ago and has recently updated it to tie in with the inaugural performance of an opera about her life! Here is the press release for the opera and more specifically the release of the revised ebook for any person in your own life who has a hearing loss and might enjoy receiving it. I highly recommend it!
Rosemary Pryde

Beverly Biderman, the author of WIRED FOR SOUND: A JOURNEY INTO HEARING is pleased to announce the birth of an opera based on her memoir of learning to hear with a cochlear implant. The opera, titled TMIE, on the threshold of the outside world, will premiere in English February 25th, 2016 in Lisbon, Portugal at O’culto da Ajuda. The intriguing “TMIE” in the opera title is the name of a gene involved in hearing and deafness.

A new revised and updated version of Biderman’s classic book on deafness and cochlear implants is now available as an ebook. This rare “inside” account of hearing with a cochlear implant, the first effective artificial sensory organ ever developed, is a moving story about a deaf woman’s journey through deafness and into hearing.

Praised by Oliver Sacks as “a beautiful account full of wonder and surprises,” the 2016 edition brings the reader up to date on the technology, and more importantly, on the transformations in Biderman’s life brought on by her cochlear implant.

“… reads in line with the best of memoirs, one that leaves us wanting to hear her voice again.”

Foreword

Beverly Biderman has had a progressive hearing loss since she was a toddler. It became profound by the time she reached her early teens, and from that point on, she was completely unable to understand any speech without lipreading. As an adult, she had surgery for a cochlear implant, and then — everything changed.

The ebook, “Wired for Sound: a journey into hearing” is available on Amazon.

For further information, or complimentary reviewer copies of the ebook, please contact Bev.biderman@utoronto.ca

More of your stories

This week we have stories from two people who use hearing aids, a family member and a person with a cochlear implant. Thank you for sharing your stories with us.

Because the subway is so loud, I routinely turn off my hearing aids and then read the newspaper. One day the woman beside me spoke to me. I said, “Just a minute,” and started to turn on my hearing aids. She spoke again, but too soon. When I finally got them on she shouted, “Is the next stop Davisville?” I heard her then and about 25 people in the car shouted, “Yes”.
– C.

I wear two hearing aids although my loss is not supposed to be severe. The aids are supposed to cut out peripheral sounds but they certainly do not. To be in a meeting with several people or in a restaurant with loud music or any large room with an echo is frustrating. All the sounds bubble around and prevent hearing clearly what people are saying. I simply have to concentrate on one or two people and let it go at that.
– Shirley

As a person who lives with a spouse with a profound hearing loss I can speak from the other side of the story. My spouse has lived with hearing loss for 55 years and wears two powerful hearing aids and has a wireless microphone system. I wear the microphone or we put on a table or in front of the TV. It has been a godsend to us and makes communication so much easier. My issue is that I don’t always know when my spouse has heard me speak. Sometimes I assume that he does and then I learn he has no idea what I said. Other times he doesn’t respond and I assume he has not heard but when I say, “Did you hear me?” he says he did. Makes conversations challenging.
– E.

Several years ago we attended a workshop at a hospital for people with hearing aids and their relatives. It was frustrating to be told that all the onus was placed on the family and friends to speak up, to be patient, to face the person. There were no suggestions that some of the responsibility is on the person with the hearing aid to attend, to respond, to let people know when they are not hearing.
– E.

I was diagnosed with a hearing loss at the age of 25 but it was not a big problem for me as I was still able to use the telephone. I was employed in financial services. As soon as I could no longer use the telephone to talk with our clients I got downsized, but they called it ‘technology change’. So I just went into a shell and felt useless. For about two years I didn’t go to the bank or grocery shopping because I was so afraid of someone talking to me and I wouldn’t understand.

I went to work for Canada Post as a letter carrier-clerk and was there for 12 years. At the age of 59 I got a cochlear implant and life became more normal for me.

I remember the day my implant was activated. I was so thrilled I went to my car and put the radio on. Big mistake! I could hear the news and music very well and could understand the words. But then a fire truck came up behind me and I didn’t hear the siren so they came really close and blared the horn so loud I panicked and couldn’t move out of the way. I didn’t know whether to go left or right or go ahead so I stopped in my lane and the fire fighter was really upset with me until he heard me say that I am deaf. I usually make good use of mirrors, but this day I was so happy with my implant, and hearing things I hadn’t heard in a very long time, that I got spellbound.
– Annie

Do these stories sound familiar to you? Do you have other stories – either as someone with a hearing loss or a family member or friend? Send me your story. It’s easy. Just click the ‘comments’ button below and give me your first name and email address and we’ll get started.
I look forward to hearing from you

Stories of hearing loss – now it’s your turn

Last week I asked for your stories about hearing loss and I have heard from three of you already. Here is the first in what I hope will be an ongoing conversation about hearing loss.

Your Stories

I have had a hearing loss for many, many years and I do wear a hearing aid. I have a great frustration with public speakers who do not and will not use a microphone when one is available and say, “I’m sure everyone can hear me.”
– Howard

I have several of the frustrations mentioned [in the March 10, 2013 post] – especially the problem of being with a group when several people might be speaking at the same time. Another problem area for me is people turning away as they are speaking to me – especially if they are totally turned away, then all I hear is ‘noise’. I also have a problem at a conference or in a lecture hall and also in church when the speaker from the front of the room turns a bit from side to side. I really only hear clearly when a person faces directly towards me.
– Jan

Very common I’m sure. It took me a long time to admit that I needed hearing aids. Finally agreed to get tested but was confident it was a waste of time. Was a bit shocked when the doctor said “significant hearing loss”.
Generally quite happy with the hearing aids though some sounds [e.g., kitchen noises] are jarring. I do wear them all day, every day.
One advantage I recently made use of was while attending a concert and finding the music to be uncomfortably loud. “Ta da,” I took out the hearing aids and enjoyed the rest of the concert in comfort.
– Tom

Do these stories sound familiar to you? Do you have other stories – either as someone with a hearing loss or a family member or friend? Send me your story. It’s easy. Just click the ‘comments’ button below and give me your first name and email address and we’ll get started.

I look forward to hearing from you.

I want to hear from you!

I would like to hear your stories – as a person with a hearing loss or as someone who lives with or is close to a person with a hearing loss.

My hope is that I will receive an embarrassment of riches and we can begin to start a conversation online with those who read my blog.

To get you thinking, it might help to have some examples. Several years ago I taught a rehab course for a group of adults who were newly deaf and their families. We talked about the challenges of being deaf and of living with someone struggling to hear.

Here are some of the frustrations those with a hearing loss identified:

• Several people talking at once around the dinner table.
• Cracking paper – it interferes with other sounds.
• Hollering or mumbling rather than speaking clearly.
• Feeling a burden asking others to repeat.
• ‘Sizzling’ car sounds. [I’m not sure what this is but it does sound rather dangerous!]
• Talking as soon as they come in the door. I can’t hear a thing!

Some frustrations experienced by their family members included:

• Refusing to consider hearing aids. [This can be a huge challenge as hearing loss often creeps up on you and it takes a while for the person with the loss to realize they are losing their hearing.]
• Disputes about sound levels for television, radio and other electronics.
• Not paying attention to what I am saying.
• He won’t wear his hearing aids.
• I’m unsure how to help.

Do any of these situations sound familiar? Are there other challenges you would like to share?

If you or a member of your family, immediate or extended, has a hearing loss and you would like to share your stories, please let me know. Or you may have grown up in a family where a parent, grandparent or sibling had a hearing loss. Or you could be a good friend with someone who is deaf and want to share your particular perspective. You can write about the highs and lows, the celebrations and the challenges, the frustrations and the sadness.

You can send me a few sentences or you can write several paragraphs. Whatever you want to share will be welcome.

I will keep your identity private unless you wish to be acknowledged and appreciate your willingness to contribute your story so that others can learn from your experiences.

Here’s how you do it. Send me your first name and email address through the ‘leave a comment’ section below so that we can correspond. I will write back to you, start the conversation and we’re off to the races!

I look forward to hearing your stories. I know I will learn a great deal from you.

Rosemary Pryde