Transition to Being Deaf - It Has It's Problems!

Once I was hard of hearing, now I’m deaf. I started to lose my hearing in my early thirties and it came as a bit of a shock to have hearing aids fitted. Family and friends joked about it but I was delighted that I could actually here things again. No-one explained then that my hearing would continue to deteriorate over time.

Going deaf slowly is obviously easier to cope with than the shocking loss of hearing overnight, but to be told in your early 40’s that you have the hearing of someone touching 90, was rather depressing. Worse than that, the consultant was dismissive and indicated I would just have to put up with it. There was no information on continuing support, equipment aids that were available, or things as advanced as cochlea implants. All these things I had to find out for myself from a local support group and RNID (now Action on Hearing Loss). It can be really confusing trying to the right hearing aid, loop link, telephone, fire alarm, door bell, television …….does that sound familiar? So here are some of my experiences from hearing loss to being deaf.

At 58, I now have the warmth and companionship of Lucie my Hearing Dog for the Deaf who arrived last year just as my hearing lapsed yet again. Now, it (my hearing or lack of it) is registered as a profound hearing loss. Lucie has come just at the right time as concentrating on her training and getting to know her has helped me focus on something other than my hearing loss. She also arrived when it was becoming increasingly obvious that hearing aids, however advanced, and I had one of the most advanced private aids available, were no longer going to be effective. I haven’t had an aid for my right ear for nearly five years. My left ear is deteriorating alarmingly quickly.

So, how does an adult cope with hearing loss to this level? Well, surprisingly well with the right support. Having a Hearing Dog for the Deaf is a great help. She alerts people to my hearing loss in public places and reinforces it with people I know. I have no doubt there are lots of deaf people out there who know the phrase, “But you don’t sound deaf!” Lucie reminds people that actually I am deaf. This makes life easier and also means I don’t constantly have to remind people to look at me when speaking, or ask people to tap my arm to attract my attention before launching into conversation wasting their precious time and frustrating the hell out of me. Reactions are fascinating when out shopping and it is great when people come up to me, face me and speak. It’s the dog they are interested in though!

Lip reading is a skill everyone uses to a certain extent. Becoming deaf as an adult hones in on this skill. Going to Lip Reading classes helps to improve that skill further.  Lip Speaking is different to Lip Reading. A Lip Speaker can be a great support for someone who is deaf if you can lip-read adequately and is delivered by someone who is trained, just like interpreting with sign language. I have recently found this support invaluable at meetings and consultation events, the only problem being that the support is expensive. At meetings run by local authorities or government agencies because the support is expensive, it has been suggested to me that in a meeting it might be better to get people to speak louder!! The other problem is that most of the work I do, I undertake as a volunteer. I did ask about Access to Work for volunteers but there is no financial support unless you are in work or have an offer of employment. That is such a shame as so much of what volunteers do is valuable and beneficial to society.

People going deaf in adult life tend to speak of their hearing loss rather a lot.  Like the ex-smoker who is still a smoker at heart, going deaf as an adult you are still a hearing person at heart.  It’s a challenge knowing which camp you are in – the hearing world or the deaf world?  Are you part of the hearing community or the deaf community?  But I suspect going deaf in later life also makes you a campaigner.  I have become a boring campaigner on behalf of the deaf community although I am not altogether sure what that means?  In my head I still hear.  My ears don’t work anymore but the rest of me is OK.  So doing a bit to raise awareness of the importance of good communication when you have lost a large element of communicating is a way of contributing to better links and support in the future.  

So, what of all that stuff to help support you? Frankly, it’s bad enough just keeping up these days with all the new everyday technology that is available. I’ve come to terms with texts and emails as I gave up completely on the phone about 18 months ago, apart from still ringing my Mum who is 88. Whilst she can hear me, I no longer hear anything she may say in response, but she likes to hear my voice. Emails of course, are a lifeline, but I get so very frustrated with on-line video. YouTube opens up amazing opportunities for the hearing person but if you are deaf then it is very limited. Communication via video on-line is rapidly growing. For the deaf, online news is great, but the increasing use of film footage with no subtitles closes off another area to the deaf. So, these wonderful technological advances also mean barriers too.

One advance is just about to become available to me and I am very excited about it.  Having been assessed for a cochlea implant the team have recently confirmed that one implant will be fitted sometime this year. But, this has been a long struggle and I feel that the benchmark for an implant is set very high for adults, with little or no hearing. Who knows how successful this will be but most of the discourse is encouraging especially when you have had hearing. My family are delighted and not only have they been on my journey with my hearing loss, they will be on the journey to ‘switch on’ too. There are lots of things I miss having lost my hearing as an adult. I don’t dwell on them too much, but one thing that has been heart-breaking is the inability to join in on family conversations. I hope this may change very shortly.

If you have seen anything in this short article that is familiar, then do feel free to contact me. Support from people who understand the frustration of communication barriers is always helpful. You can email ann@slfirst.co.uk and they will pass your message on to me.