Category Archives: Slices of Life with a Hearing Loss

Being cared for

It has been about a year since I last wrote in my blog and I want to let you know about a new experience I am about to have early next week. On Monday I will be getting a new knee and hope to be dancing in the streets by next spring! But first, I need to go through with the surgery as well as a stay of a few days at the hospital. To put this in perspective, the last time I stayed overnight in a hospital I was five years old and having my tonsils out. After all these years, this is a new and somewhat anxious time for me.

But I am being cared for already. The patient navigator in the knee and hip unit at the hospital will wait with me while I am in the inner sanctum – where you go after you have been poked and prodded and are enrobed in the lovely hospital gown and stretchy blue slippers. She will do this because I have a fear of not hearing my name being called. Even though I will still have both my hearing aid and Cochlear implant processor on, nerves tend to take over at this point and all senses deaden a bit. So she will be my ears. The anesthesiologist is ready to cope with the whistling that comes when my hearing aid is encased in the shower cap I will be wearing and both hearing aid and processor will be taped to my head so they don’t fall off. I am not used to all this attention! Both staff and volunteers at the hospital have an excellent knowledge of the challenges of various disabilities and they know how to help. I know this just from my recent pre op meetings to get ready for this venture.

So I am staying overnight – probably two. I don’t wear my hearing devices when I sleep. In fact it is frowned on by the professionals. So I worried about being able to hear staff at night. I mentioned this first to my surgeon who instantly understood the problem and joked that we would not want staff to be yelling at me, especially when I wouldn’t be able to hear them in any case. I have a friend whose husband had a profound hearing loss and was in hospital for a while before he died a couple of years ago. He too was struggling, so his son found him a Boogie Board – it is like an electronic etch and sketch for those of you who remember this toy. Jill has lent me David’s Boogie Board to use when I am literally in the dark so I can pass notes back and forth with those taking care of me. This has eased my mind considerably and the patient navigator (who looks after you before, during and after surgery) thought it a terrific invention.

The aim of the hospital staff is to make all patients as comfortable as possible, but perhaps especially those that need a little extra care. They surely have with me.

The Communications Challenge

The other day I was introduced to someone and as is usually the case, mentioned early on that I was deaf. His response was, “Oh, you use sign language.” “No,” I said, “I speak!” He was rather taken aback and indicated that surely I was taught how to sign in school. I told him no, I went to a regular school and didn’t pick up any signs for years. Now I know the signs for Merry Christmas, Happy Easter, thank you and sorry, but that’s about it.

This encounter got me thinking about the different ways those of us with hearing loss communicate. If you are unfamiliar with this topic, here is some background.

There are basically three types of communication approaches that are taught to children with hearing loss: verbal (and that can include speech reading or lip reading as well as listening for auditory cues); sign language (in Canada, American Sign Language is used but there are other versions in other countries); and Total Communication, which is a combination of speech and sign.

The communication approach you are taught as a deaf child depends on many factors including current educational thinking, whether you were prelingually deaf (generally deaf before the age of one) or became deaf later in life, the severity of your hearing loss, your family situation and the availability of therapy services in your community.

I first learned about the controversy surrounding communication approaches back in the mid-eighties when I volunteered to sit on the board of a charity providing services to deaf individuals. This organization referred to those of us with hearing loss as either Deaf, deafened or hard of hearing, depending on the severity of the loss and the type of communication we used.

I learned that those advocating sign language don’t always agree with those advocating speech, particularly where children are concerned. Often there are severe camps that attack each other.

In my own case, I was four years old when I lost my hearing and five when the diagnosis was finally confirmed. As the youngest of three children in a family that also included three adults, I learned spoken language very early and by the time I was four was reading books, so it seemed a natural decision for me to attend a regular school.

The educational authorities however, wanted to send me to the school for the deaf where I would learn a combination of sign language and speech and be with other children who were also deaf. At the time, the only specialized school was a three-hour drive away. My parents decided that there would be no way they would send their five-year-old to boarding school and put up a fight to have me enrolled in a regular school, two blocks from our home. I’m very glad they did, but when I tell this story to those who use sign language exclusively, they think I am criticizing them.

I am truly not.

Over the years I have thought a lot about why the feelings regarding this issue are so intense. Parents of deaf children want to communicate with their child and many fear that they won’t be able to do so unless their child learns spoken language. Adults using sign language often had to cope with less than ideal communication situations during their school years and when they discovered sign language, a whole new world opened up for them. Anything that threatens this world, including deaf children who receive cochlear implants, is very scary.

I have always believed that communication in all its forms is a life force. We cannot do without it. Imagine how crucial it must be for those with hearing loss to find ways to communicate with others. Anything we can do to make it easier, whether it is providing a variety of communication options for children, continuing to develop better technical tools for those using speech or simply honouring the communication approach chosen, would be a good thing!

Staying Silent About Hearing Loss

I was at a meeting not too long ago to plan a strategic action conference for our church. We were going to place everyone in small discussion groups and wanted to mix them up so people could meet with those they may not know well. We had 17 tables in different rooms around the church, including six in one hall and four in another, neither room conducive to easy hearing. We made plans to accommodate those having mobility challenges to get to rooms that were easily accessible and I wanted to make sure we did the same for those with hearing challenges.

To achieve our goal of bringing people together, we planned to hand out cards with the room designations and I wanted to make sure that those in the congregation who cannot hear well would be able to select a room with just one table. I suggested that those handing out the cards check to see if anyone needed extra assistance with this.

One of the committee members balked at this idea. He said he really wouldn’t have time to ask people if they would prefer a quieter room and said they should announce up front that they were deaf.

I said this likely wouldn’t happen unless they knew you were already familiar with their hearing loss. People with hearing loss often tend to keep this hidden from view. The committee member was a bit annoyed at first but then remembered one of his brother’s girlfriends. He had known her for several months before he realized that she was profoundly deaf and was taken aback that she didn’t feel comfortable sharing this with her boyfriend’s family. In my own history, I really didn’t talk about being deaf until I was in my 30’s and remember being quite embarrassed at being ‘called out’ by a co-worker. It was actually the best thing she could have done for me. Now that my colleagues knew (they had surmised but were never certain as my long hair covered my hearing aids), they could make sure I had what I needed to be comfortable in the workplace.

Why is it that we stay quiet about this? We all know that hearing aid manufacturers use the invisibility of the aid as a major selling factor. But why do we want to hide it ourselves? People do know!

I have written about this before, but it does strike me as odd that of so many disabilities, deafness seems to be one of the hardest to reveal about ourselves. Hiding it or trying to hide it does us no favours so why do we do it?

I actually don’t have any definitive answers. Some will say that hearing loss is associated with age and that’s the reason. Well, so is the loss of 20/20 vision, yet we sport stylish glasses and laugh about trying to see the fine print. A television commercial shows a quartet of women of a certain age at a restaurant with one holding the menu out as far as her arms will let it, giving up and asking for the special of the day. We know she can’t read the menu and we laugh with her. What if she couldn’t hear? How would that work? Would she cup her hand around her ear to try to hear the specials of the day, give up and just point to the first thing she sees on the menu? Would we laugh at this scenario or would we feel a bit of pity and then perhaps be uncomfortable with that feeling?

Why is this? One reason I suspect is that there still aren’t a lot of us. The current estimates are that 10% of the population has hearing loss and this percentage is expected to grow as the baby boomers age. Rock musicians experience hearing loss at earlier ages now because the loudness of the music pretty much kills the hairs in the cochlea. The same applies to kids who listen to a lot of loud music. And the damage is permanent. We really need to start to speak up so that others become more comfortable saying they can’t hear.

I suppose when there are more of ‘us’ than ‘them’ we will be more comfortable bringing this topic out in the open. In the meantime, let’s not stay silent. Let’s do some talking ourselves.

Some challenges of hearing devices – not your average pair of glasses

Audiologist Glen Sutherland’s most recent post on this blog talked about how hearing aids can improve the quality of your life. And they can. But for those of us who wear them, they can also pose many challenges.

For the uninitiated, hearing aids are NOT like glasses. Pretty much the only things that can go wrong with glasses are that you lose them or the frames break when you drop them on the floor. Both have happened to me.

Hearing devices are another story. Here are a few of the challenges I have experienced.

I have a T-coil switch on my hearing aid to help me hear on the phone and it generally works quite well, a great relief to someone like me who would not be able to use the phone without it. Sometimes however, there is electricity in the air and I get loud static noises when I press the T-coil button on my hearing aid. It could be a plane overhead or an electronic gremlin. Whatever the cause, it just adds to the challenge of carrying on a phone conversation.

Glasses sometimes have a tendency to slip down your nose. A quick push and you are set again. Hearing aids have a mold that is fitted to your ear. Molds work pretty well for a while but eventually they shrink. When that happens, an air pocket is created between the ear and the mold. That causes whistling! Sometimes when people hug me they press against my aid and that can cause whistling sounds. And hats! If the brim of a hat is pressing down on the top of the aid, I get whistling again. Even standing too close to the wall can cause this most annoying sound.

F/M systems also create interesting challenges. For those of you not familiar with this term, these wonderful pieces of technology augment the sound we can receive from hearing aids and cochlear implants. (Unfortunately, my F/M is not compatible with my implant, but that is a story for another post).

I have something called direct audio input in my F/M. This feature, combined with Closed Captioning allows me to understand pretty much everything on television. However, if I move my head just slightly or for some odd reason raise my arm in a certain way, the sound from the F/M cuts out and I hear nothing. I have no idea why! It reminds me of those old fashioned rabbit ears we used to have for televisions. Occasionally someone had to stand and hold the rabbit ears in a certain way for the reception to work.

Just this past week my F/M stopped working. I thought the problem might be with my hearing aid as when I pushed the F/M button on the aid I heard a buzzing noise and then the sound just faded away. Apparently the ‘connection’ (a little piece attached to the hearing aid), was loose. Pretty soon this loose connection would affect the T-coil button as well. Luckily it was an easy fix. I didn’t need to send my hearing aid away for repairs and try to cope with my old replacement aid that gives me only about 50% of the sound I can get with the powerful equipment I have now.

When I remember the rudimentary hearing aids I had as a child I am very grateful for the leaps in technology that allow someone with a very profound loss like me to hear. But they are still a lot more complicated than glasses.

Public Speaking: a great way for people with hearing impairments to shine

Earlier this summer I was invited to attend a meeting with two others for one of my volunteer groups but initially wasn’t given the purpose for the meeting even when I asked. The other two wanted to ask for my help and felt it was better to explain why when we met face-to-face, as the situation was complicated. Until I found this out I was actually of two minds whether to participate or not. What on earth is this I wondered?

It took a while before the light bulb came on. Those of us with hearing impairments so often can’t assess a situation because we can’t hear. We don’t know what is going on and that makes us feel not just out of the loop, but often vulnerable and sometimes even rather stupid. We feel that we are the only person in the room who doesn’t know what is happening. That was how I felt.

Then I remembered part of an old boiler plate speech I used to give to groups of people with hearing impairments. In this speech, I shared my experiences growing up deaf. One of the positive experiences I talked about was how I discovered public speaking in my salad days and what a difference it made.

Public speaking is a great way for us to build confidence and feel comfortable in a group. We so often feel out of control because we can’t hear. But when we give a speech, we’re the ones doing the talking! We control the situation and can even arrange for questions from the audience to be written down rather than shouted out. I’ve done that on numerous occasions in fact. But the big advantage in my mind is the way others perceive you. Instead of the often quiet, non-participating individual in a group because you can’t get what is being said, you become the expert everyone wants to hear. Ironic isn’t it.

So if you are looking for a way to boost your confidence – whether you have a hearing loss or not – try public speaking. Take it from me – it works!

“Hear’s” to the Professional

Last weekend I went back in time. Some of you who have read my blog from the beginning may recall that I was once the executive director of an organization called VOICE for Hearing Impaired Children. I left more than 17 years ago but last weekend was transported back to my VOICE days when I attended its annual conference.

It was wonderful to reconnect with so many people – primary professionals, as the children I knew from my days at VOICE are grown up and most are no longer actively involved. What struck me was the dedication of these professionals – Teachers of the Deaf, Auditory-Verbal Therapists and others – devoting their own time on one of the nicest spring weekends so far this year to learn about the latest in listening therapies and technological supports so they could better help their charges back home. One of the participants is actually retired but comes back year after year to share her knowledge and wisdom.

The Audiologist who writes the monthly posts on this blog is a good friend of mine and was coerced into doing this over a few glasses of wine. He loves it, does it totally on his own time and enjoys the fact that he is helping others to understand better what hearing impairment is all about and how it can affect both the person who is deaf and his or her family. One thing I have always found difficult to clearly explain to others is why I may be able to hear the words but not understand them. Glen’s most recent post about how those of us with sensori-neural loss hear distorted sounds was one of the best explanations of this challenge.

The two Hearing Aid Specialists who make sure my hearing aid is in working order and cheered me on when I was getting ready for the cochlear implant are ready to help me at the drop of a hat. I’ve known both of them since they first started their work and they just get better every year.

My cochlear implant Audiologist at Sunnybrook treats every small success with the same enthusiasm as me and shares my dismay when I am not moving forward as quickly as I would like. She reassures me that I am making good progress and instills confidence in my ability to make this work. We are partners on the journey. She is continually searching out supports for me, is always ready to help with every challenge and answers every question. I am never hurried during my time with her.

I wear a hearing aid in one ear but I also have a personal F/M system that helps me in group situations. Imagine my panic late one Friday evening a few years ago when the F/M didn’t work and I had a workshop to lead the next day. Well there is a helpline for Phonak, the company that manufactures both my hearing aid and the F/M. I called and was immediately connected to a live Audiologist who told me exactly what I needed to do and waited until I was satisfied that all was in working order. I had the feeling that if the system failed again she would express a new one overnight.

The point of all this is that I think we are very lucky to have such wonderful professionals working to help those of us who are deaf understand and hear better, whether we are babies, teenagers or adults, wear one hearing aid or have cochlear implants. They are all interested in one goal – making life better for us.

I know there are some professionals around who just pay lip service to this goal. I’ve met some of them over the years. But the majority really do care. So if there isn’t a ‘day’ for hearing care professionals and because May is known as ‘hearing month’, let me proclaim May 9th as my own ‘hear’s to the professional’. Thank you a million times over.

Tidying Up

It pays to purge your stuff. Last weekend I decided to tackle a huge pile of files that I had put away in one of those file boxes a year or so ago telling myself that I would ‘get to it later’.

Much to my surprise, in amongst a series of training files for one of my clients was a long lost file called “My Story – Growing Up Deaf”. When I first started this blog I looked all over for this particular file as it included my boiler plate speech and had lots of tips that I have shared with my audiences. I thought it was lost forever.

So herewith in today’s post, some of the lessons I learned and tips I shared in a speech I called ‘Men’s Moustaches and Other Tricky Challenges’.

WHAT I HAVE LEARNED OVER SIXTY YEARS WITH HEARING LOSS

• Talking about it helps.
• One of our many unique talents is the result of the need to read lips. We pay attention when others are talking. People like that.
• It’s okay to be tired. Listening is very hard work.
• Don’t apologize because you can’t hear. I notice this all the time. People with hearing loss saying “I’m sorry I can’t hear you.”
• A sense of humour really helps.

SOME TIPS FOR FRIENDS AND FAMILY

• Losing your hearing is scary, especially later in life.
• Get advice from professionals. They often have good suggestions for managing everyday life with a deaf family member.
• Share your own frustrations.
• Create a place of peace for yourself.
• News flash: Hearing aids don’t always work! Be patient, especially with someone new to hearing aids.

TIPS FOR THOSE WITH HEARING LOSS

• Be knowledgeable about your hearing loss and share that knowledge.
• Let others know what helps. For me this means others facing me and talking in a normal tone of voice. Talking in a loud voice just distorts the lips making it difficult to read the words.
• Advocate for yourself.
• Be kind to friends and family. They want to do what’s best.
• Control what you can and let the rest take care of itself.

P.S. For those who may not know, the moustache often covers the mouth, making it more difficult to lip read, hence the title of my speech!