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Wednesday 3 June 2015

THE UPS AND DOWNS OF LIFE AND DEAF



“Pretend those around you are deaf to your words. Let your actions speak and communicate your feelings and intentions. This way of living ensures the potency of your message is delivered and serves as a gauge against our verbal nonsense.”
  
~  Steve Maraboli  ~
Unapologetically You: Reflections on Life and the Human Experience

My first hearing-aids were adequate and very useful. For a few years I would say I was helped to regain a normal range of hearing. As I needed more power to overcome the decline in my hearing loss I found the compromise was an increase in distracting background noise that the microphones picked up. I did not have the ability of normal hearing to filter this and concentrate on the speech. All sounds became loud or soft, making understanding no better. The answer was a hearing-aid that had more than one microphone to allow a change in the direction of the reception. All round for awareness, forwards for speech and (on later digital versions) a narrow corridor of directional listening through the noise. Frustration seems to be the most frequent word that comes to mind when describing the passage of time into profound deafness. My early hearing-aid additions had been simple sound boosters that could be connected through the t-loop system of my hearing aids or (for those with mild hearing loss) used with headphones to listen to the television or music. They just amplified the ambient sounds like an old fashioned ear trumpet. Telephones with in-built volume boosting technology of various kinds had to be tried as well with variable success.

The first and probably best help I got was the digital hearing-aids supplied privately through the Access to Work Scheme. Their cost in the 1990s was about £3000 for the two of them. The NHS did not supply these rather expensive aids at the time so for me it was a great privilege to have them. The package included the regular checks and adjustments that they needed to fine tune them to the precise pattern of my hearing loss. This gave them the ability to filter extraneous noises by identifying what was not a speech pattern and giving me a clear hearing experience for the first time in several years. This filter had the unfortunate side effect of lowering the overall volume levels. It therefore removed some of the advantage for my level of deafness as it progressed ever downwards. With the digital technology came an impressive range of add-ons (always expensive!) that could be coupled with it to improve on range and clarity. Some were linked by radio frequency to specific units for door bells, telephones, fire alarms etc. All of which enabled the  listener a greater distance from the sound source, often greater than could be had with normal hearing. As the technology became accepted the costs came down with many suppliers able to sell them for even mild hearing loss as they were small and discrete. I never felt the need to hide mine deliberately but my hair was kept just long enough to do so anyway!

Eventually the NHS could also supply the digital hearing-aids and I could return to my previous local hospital service that had been so helpful to me over the years by knowing my work and needs. I had to be able bodied at all times without long delays for repairs. Replacements were offered as and when they were needed and always better and more powerful to keep up with me. I had two that talked to each other to keep my hearing balanced even though each ear was at a different level of ability. They only needed adjusting from one side to work on both.

While in London on one occasion I tried out my new remote microphone at the National Gallery. My wife wore it on her collar close enough to keep distracting noises away from her voice. We were looking at this large painting high up on the wall. After a few seconds she voiced her opinion. I looked again at the picture and thought “what is she on about?” I couldn’t see anything to support her comments. When I looked around to ask her to explain she wasn’t there. She was looking at another picture twenty feet away! The microphone was recording her speech as though she was beside me. What I didn’t have was a normal perspection of range and direction. Like sitting in the audience of a play or concert, if I switched to the loop system I heard only what was on stage not what was around me. This disassociation from my environment was very isolating and unsettling. Sometimes it was better to hear conventionally with my aids and get a bit of noise distraction and feel part of the audience at the expense of hearing all that was happening on the stage.
When even this system became inadequate for me to hear any better I had started my assessments for the cochlear implant. I had only one ear working by then which makes directional awareness slow and imprecise. With this referral came the audiology help in London and newer, even more sophisticated microphone hearing-aids. The tuning of which was now getting very difficult to fit my ever decreasing hearing range. The complements for doing so very well with so little hearing function were beginning to wear thin.

The open market for digital technology was providing more and more variation of additions to help out. My latest remote microphone is Bluetooth connected via a loop around my neck that the hearing aids pick up automatically when the unit is switched on. It is possible to connect it directly to the aid by wire for better connectivity which requires a different adapter for each different make of hearing-aid. Along with the remote microphone the receiving unit connects with mobile phones, television amplifiers and other specific units for door bells, alarms and alerts that are tuned to it wirelessly.

When in London for one of my hospital appointments my wife and I were studying the underground tube map to find a route. She said to me “Where can I get my Oyster car topped up?”  Without looking I said “Ask the man over there by the barrier”. When I looked around she wasn’t there. She WAS asking the man at the barrier some twenty five feet away! Once again the ability of the remote device was very good but the loss of awareness of my immediate surroundings was what was missing. When walking in the street it was the same as if she was beside me and I was unaware of where she really was. If I said anything to her, I presumed, but could not be sure she would hear it. We easily lost each other in the crowds. I was more likely to respond to a warning or alert for her (which I could hear) but not for myself (which I could not!).
I think it works at its best in a static situation when a teacher wears the microphone enabling the student to hear from afar. This system is used frequently with deaf children in schools. As long as the teacher took off the microphone when leaving the room or speaking to someone else outside the room, because then the conversation is recorded as if that person was still standing close. Going to the toilet or discussing the class in secret would not be a good idea!

Now with such profound deafness the accessories no longer work well for me. So I am looking forward to getting my new Cochlear Nucleus 6 System with its Bluetooth connection built into the sound processor. This removes the need for any intermediate device to relay the sound and with its remote control the wireless operation of remote microphone and headphone channel adapter should make life much easier.

The problems with my environmental awareness may have to wait for another day!

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