Monthly Archives: November 2012

Cochlear implants: handle with care

Last week was the two-month milestone since my implant was activated. There is an enormous amount of information to take in so the audiologist usually waits until the two-month mark to impart some advice on trouble-shooting and some medical do’s and don’ts. A word of warning – there will be at least one potentially squeamish moment in this post so if you are at all sensitive, you might want to give this one a pass.

Aside from the usual ‘keep the external processor clean and dry’ there are all kinds of precautions for sports, security systems and medical procedures. I should perhaps explain a couple of things here for those who are not familiar with cochlear implants.

The implant itself is inside my head but very close to the skin. I can feel it protruding slightly just behind my right ear.

I have a magnet in my head! It is attached to the upper part of the implant and allows the external processor, which also has a magnet, to stay put on my head. Early on I put a few of those thin bangles on my wrist then proceeded to place the processor on my head, but the bangles got in the way. The internal magnet attracted them and here I was with my wrist attached to my head! It is quite a powerful magnet.

So, sports. If I ever have the urge to try martial arts or contact sports such as rugby I will need to resist. Any blows to the head could damage the implant. I will also no longer be able to participate in amusement park rides that involve high speeds as the forces could potentially dislodge the internal parts of the implant. I am personally not saddened by this news but I can well imagine a child with a cochlear implant would be. This is no walk in the park.

Airport and store security systems are sometimes activated by the implant so I need to carry a little card with me that explains what I have in my head. And static electricity can cause havoc with the external processor, resulting in the program in the processor going a bit haywire which would result in my hearing going haywire too.

Where it gets a bit hairy is in the medical section. MRI’s are a real challenge and require consultation with the cochlear implant specialist as well as the manufacturer of the implant. Why? Well, the M in MRI stands for MAGNETIC. The whole thing is one powerful magnet. And magnets attract. There is potential for the magnet in my head to be blown right out! Yikes! Clearly this is nothing to laugh at. But it does create yet another topic for my blog!

On a much lighter note, while many of my friends have seen my external processer, a few have not seen the turquoise cover that is just above my right ear and really stands out. I was showing it to a friend of mine the other day. He looked at it, paused for a second and said that it looks just like a mini fascinator. His wife suggested that I could attach a tiny feather. So I am right in fashion!

Learning to hear with my cochlear implant: the second stage

I saw my family doctor last week – the first time since I had my cochlear implant surgery. She is a partner in a group practice so there are always lots of people around and several examination rooms. I walked in and was met with all kinds of sounds which were VERY VERY LOUD! In fact the conversation at the front desk between two other patients was so loud that I could not understand what the receptionist was saying to me.

While waiting to see my doctor, I heard the clip clop of shoes; the crackling noise as the paper cover was torn off an examining bed next door; the clunk of a door closing; the snap of gloves and the clicking sound that those tiny tubes for blood make when they are jumbled together. I had heard none of these sounds before or if I had they were so faint that they didn’t register. This time they were so loud as to be distracting. I know that our brains sift through all the noise and remove extraneous sounds so we can concentrate on the sounds that matter. My brain hasn’t learned to do this yet. So I hear everything. And it is unfiltered, often unclear, loud and distracting.

I am calling this the second stage of learning to hear with my cochlear implant and expect that it will go on for quite a while. This is progress!

Hearing Loss: the invisible disability

I noticed an advertisement in the paper the other day for ‘the invisible hearing aid’. The copy emphasized the message ‘no one will know you are deaf’. This kind of message has concerned me for a long time for all kinds of reasons.

I don’t blame hearing aid companies as they are responding to the market which wants ‘invisible hearing aids’. And I understand that. For years I wanted my hearing aids to be invisible too. I was in my early thirties before I felt comfortable telling a stranger that I couldn’t hear. I was almost forty before I had the confidence to talk about my own experiences publicly.

My problem with these advertisements is that they appear to send the message that if you are deaf you will want to hide it or even that you should hide it. There is an assumption in this message that we don’t want others to know that we can’t hear. But it really defeats the purpose. Even with hearing aids, we don’t hear everything. If people don’t know you are deaf, they may think you are a snob, stupid, a poor listener or bored with the conversation. Well perhaps the last might be true at times.

This can hardly be a good thing. But the message is insidious and results in many hearing impaired people hiding their disability. We need to stop this.

Sometimes people will talk to the ‘hearing’ person rather than directly to the person with the hearing loss.

A few think it is a contagious disease and will back away.

Others yell! Sort of like when an English-speaking person visits a country where the language spoken is not English. They think all they need to do is to speak more loudly and others will understand what they are saying. Yelling doesn’t help in either case.

All of these things have happened to me and all because others do not understand what hearing loss means. It isn’t that they don’t care – far from it. It is just that those of us with hearing loss may not feel comfortable explaining because we have heard the message not to talk about it. We need to get over it.

I was lucky enough to get over this hurdle a long time ago and it amazes me that the message that we should hide our hearing loss is still so prevalent. Otherwise manufacturers of hearing aids wouldn’t emphasize the invisibility factor.

When I received the external processor for my cochlear implant I was very disappointed that it was not the turquoise colour I had ordered but a basic brown that was difficult to see in my reddish-brown hair. A few weeks ago someone said to me, “Oh, you can’t even see it, isn’t that great!” The message persists.

Before I offer a few ideas, I have one more story to share with you. I was giving a talk about the impact of hearing loss on day-to-day life at a conference several years ago for people working with others who have disabilities of all kinds. I told my story and after the talk several people came up to ask me questions. The last person asked me this: “Doesn’t it bother you when people talk behind your back?” I must admit that I was nonplussed and didn’t think of a zinger of a response until I was on the train on my way home: “Of course it doesn’t bother me because I can’t hear them!” LOL.

What can we do? Here are some of my thoughts.

As we age and because of all those rock concerts, more and more people will suffer hearing loss. We need to educate ourselves and others about hearing impairment. It is a complex disability and deserves study.

Those of us with hearing loss who are comfortable with that loss need to speak up and share our stories and tell others what works.

We need to make it easier for people to talk about their hearing impairment by asking questions that convey interest and encouragement such as ‘Can you tell me what it is like to be deaf?’ ‘How does your hearing aid work? and ‘What can you hear?’. The answers will result in concrete, usable knowledge.

And we really need to make hearing aids for adults sexy I think. Hard to do you might suppose but if you were to check out any of the kids’ sections of hearing aid companies you would find a myriad of jazzy colours, both solids and patterns, for behind-the-ear hearing aids way beyond the basic beige, including a clear plastic cover that shows the inner workings of a hearing aid. Very cool.

Once we have a critical mass of people talking about their hearing impairment and educating their friends and neighbours along the way, there may not be as much of a need for ‘invisible hearing aids’ except perhaps for ease of wear and in cases of physical challenges. And newcomers to this unique family won’t be so afraid to tell others that they can’t hear.

Training my brain to hear: a step forward, a step back

I have been making steady progress with my cochlear implant since it was activated several weeks ago. I have moved from understanding two-syllable words to being able to respond to short questions. And I now hear the chimes when the subway door closes and the sound of a steel drum played by a busker as musical notes not noise, albeit an octave lower – all using only my implanted ear.

However a week or so ago I was in church and noticed that my implant seemed to overpower my hearing-aided ear, which is the one I still rely on to understand any situation involving more than one person. It is great that the sounds from the implant are becoming more prominent. But they are still pretty terrible. People still sound like Darth Vader and when I sing I now hear my voice in the implanted ear more than my hearing-aided ear and it is not pretty! I love singing but think I will let it go for a while. And I don’t always hear full words yet, only pieces. To show you what I mean, I do a number of sound exercises on the computer to practice hearing with my implant. One of the exercises showed the word ‘watermelon’ on the screen. When the computer voice pronounced this word, I heard ‘wahmah’. It is still a huge challenge to understand just with my implant.

So here I am with my implanted ear overpowering my hearing-aided ear with sounds that don’t always make a lot of sense. I know this will improve over time but at the moment it is very frustrating. Someone suggested that I just take off the external processer and have a rest from these sounds. But the brain needs this practice if it is to learn how to clarify the sounds. So I keep my processor on and persevere. I have been told that it could take a year for everything to fall into place. I’m beginning to believe it.