Hearing Friends

12:13:19 o'clock BST
Feeling Happy

Time to let go. Get those frustrations out into the fresh air where we can share them. 

When I first started this journal, I hoped that those of us with hearing loss could post here our anxieties, our problems, our solutions and our hopes to find out how much we share. It hasn’t worked out like that.

Although there has been an encouraging number of visitors, no-one has contributed any thoughts. And this seems so very much in character with deaf and hard of hearing folk – we don’t find it easy to talk about our problems.

Are we being bravely determined to get on with life without complaining? Or do we consider it’s completely private – a part of us that we don’t want anyone to take too much interest in, and don’t want to share? Or do we just think it’s impossible to express in words how we feel about our lack of hearing and the way it affects our contacts with other people?

I personally think that the last answer is a big part of the reason we hold back. How do we describe the partial loss of sounds? We don’t believe anyone else can possibly understand what happens in our sound-deadened world. And all too often the way they behave only confirms this. They really have no idea, and we give up hoping that we can make some kind of break-through that will help them. In any case, for us it’s all very personal.

Something so absolutely intimate cannot easily be shared except with a very few exceptionally close and trusted friends or possibly (but not always) members of our family. And even they, we feel, don’t want to be constantly reminded. So we say as little as possible and the more we keep our feelings to ourselves the more introverted and solitary we grow to feel about everything to do with our ears.

We think ‘they’ don’t understand. But do we really understand what hearing loss does to us?

Can’t hear. What else is there to understand? Well, as we all know, it’s not that simple by a long way.

Can there be anything good to say about deafness? If there is, isn’t it time for us to share it, get it out in the open?  For example, I find that although there may be limits to what I can hear, whatever gets through I value more. Because I am not ‘blinded’/distracted/mesmerized by words people use, I can see who they really are, know them better, love them – or not.

What do you think? How can you make us feel better about our hearing loss by sharing how you feel about yours? It’s not all doom and gloom – not by a very long way.

C’mon! Why don’t you give it a try? Surprise yourself, and us. Anything you can think of, no matter how small, will make a difference to all of us.

Over to you!!!

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15:18:14 o'clock BST
Feeling Quiet

Getting used to a new hearing aid or the new settings of an existing programme takes time. We're told to be patient, and I have learned to accept that my brain needs to recognise the new patterns of sound in order to understand and decode what they represent. Our memories of earlier sounds, all learned over many years of experiences, cannot be easily replaced. This retraining of our brain is something that needs our patience. But much more than we might expect.

My hearing loss is severe (I only have one ear that works and it offers less than 35% normal hearing). I was fitted with a brand new top of the range digital aid almost a year ago. It gives me a choice of four programmes - 'normal' switch-on programme using omni-directional microphones; music programme; normal with T position; and  a 'comfort' programme which is actually the directional microphone selection.

For more than 9 months I struggled to get used to the switch-on programme, and only in conditions of the severest background noise did I resort to the comfort programme. When I did so it didn't seem to help me very much. About two months ago, I tried using the comfort programme exclusively, making sure that I reduced the volume by two beeps. By doing this, at first it seemed that I was losing a lot of the sharpness which I felt was necessary. But the longer I persisted, the more it became clear that this new combination was much better. Yes, some of the clarity is no longer there. But instead, I hear voices coming through the background and can decode the words more frequently and accurately. In many ways this is the best of all worlds - less harshness, better decoding.

However, it has taken me nearly a year to reach this point. Very gradually my brain has taken on board the new sound combinations which it now regards as a new normality. I am happy to trust this relearning process because it gets better the longer it goes on. And I know that one of the reasons it has happened is because I have stayed with the programme as it is set up and have resisted the temptation to go back to my audiologist for further adjustments. My brain needs the inputs from the hearing aid to remain predictable and reasonably constant.

This has been a very interesting and encouraging experience.

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15:54:00 o'clock BST
Feeling Happy

Lunch-time. A group of about 12 friends chatting over sandwiches and drinks in the sunshine. Bubbly atmosphere. Smiles and laughs. Heads nodding eagerly. Everyone contributing, clicking into the loop with a comment as soon as there is a gap, then watching, waiting, listening for the next one. Fast moving roller-coaster chatting that makes everyone feel happy. All about connecting - hearing the words, and the subtle meanings behind the words so that we can share the inside story. Inclusive. That's what friends do, don't they? Make us feel that we belong.

But what if we don't connect? What if all that happy repartee is too fast, too noisy for us to decode? What if we can't click in because we don't know what to offer - haven't understood more than one word in five and probably misheard anyway? That was what happened to me at lunch-time yesterday. For well over an hour I nodded, and smiled when I felt it was right, and understood almost nothing. Connection close to zero. Big problem? Of course. From time to time I managed to chat with someone beside me who knows about my hearing loss and is kind enough to speak carefully. We connected well, but while he was concentrating on me he was out of the loop so we kept it short. Crossed my mind to leave, go somewhere else and read a magazine. But I didn't. And I'm very glad. Most of the time I was a willing spectator. And, do you know, I enjoyed it? Of course it would have been so much better to be on the inside track. But I felt I was among friends.  I knew that many of them knew that I wasn't deliberately ignoring them - and anyway they were too busy competing for space to notice who was in  and who was not. My enjoyment came from watching them, seeing how they were adding their personal bubble to the collective babble, watching them warm each other - eyes, heads, hands all moving energetically. Even if I couldn't decode what they were saying, I could feel their friendship, see their sense of fun and their need for each other which I could share. Out of the loop was not perfect, but so much better than withdrawing into some kind of sad solitude with apologies for my inability to be a full partner. It proved to me once again that hearing differently does not mean that we have to live differently. If we do our best to be normal, others will help us. And, if we have the courtesy to remind them that we are different, they will respect us, even thank us for helping them to understand.

Should we talk more about hearing loss? Yes we should. Loud and clear. There is nothing to lose and a whole lot to gain. Let's not hide it. Let's share it instead.

copyright John Marshall Mills 2007

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11:45:13 o'clock BST
Feeling Quiet

Better off with hearing loss? Of course not. But there can be times when we get more out of less.

With normal hearing we can choose to hear what we want to hear. We take for granted that we have no difficulty connecting. Incoming messages are only as important to us as we allow them to be. We don't have to concentrate on every word. We can let our mind wander. We know how to look engaged even when we are only partly focused.

With hearing loss we don't have that choice. We have to hear as best we can, and whatever gets through has our total attention. Result? What we hear matters more. We care more, pay more attention, notice more, understand more, and feel more involved with the moment. Although there may be limits to what we can hear, what gets through we value more.

When we notice how well we are managing, we should never hesitate to give ourselves a pat on the back.

copyright John Marshall Mills 2007

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18:45:22 o'clock BST
Feeling Happy

There has been quite a lot of comment in the British Press during this past week on the problems of excessive noise. Inevitably, a couple of writers felt they should point out that there could be some upside in being deaf. Amazing how people with normal hearing so often say this, isn't it? However, it made me wonder how many positives I could find. I started by asking Tricia, my wife, who has had to live with my progressive hearing loss for more than 30 years what ideas she can offer. I quote them below in the hope that they may prompt you to add some of your own thoughts.

A few positive sides of being deaf if you are a husband. If you are a wife they work equally well the other way round 

                                                    

(NOT to be taken personally or too seriously)

 

-          You can nod wisely to bores while thinking of something totally different, secure in the knowledge that they won’t take offence if you reply with a non sequitur when they pause for breath

 

-          You can ignore requests from your wife for money

 

-          Ditto to requests to do things you don’t want to do, especially little jobs around the house which she can perfectly well do herself

 

-          You can feign total ignorance of arrangements, whether you really know about them or not

 

-          You can nod off in polite company with the excuse that it was just too tiring trying to keep up with three conversations at once (and possibly in three different languages as far as you were concerned)

 

-          You can avoid going to events such as parent/teacher evenings because you won’t be able to hear what’s going on

 

-          You can sleep with the window open even though the dawn chorus and other urban or rural noises (especially if you overlook a golf course) wake up everybody else

 

-          You can switch yourself off at discos and boogey away happily while everyone else is sustaining extreme aural damage

 

-          You can enjoy a blissful undisturbed night’s sleep while your wife deals with possible burglar noises, alarms going off, emergency police visits, partying neighbours, children being sick, and other nocturnal nuisances

 

-          You can continue your preferred line of conversation oblivious of attempts by others to steer you onto another subject

 

-          If you are unable to use the telephone effectively, you can delegate all arrangements, appointments, changes and cancellations of plans – regardless of how much ingenuity and bare-faced lying may be required of the person carrying out such delegations

 

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09:25:00 o'clock BST
Feeling Quiet

‘Deaf’ doesn’t tell you how differently I hear.

These words have a page to themselves early in my book ‘Hearing for John’. They are important because

 

they draw attention to the uniquely personal way in which hearing affects each one of us

 

they prompt us to think about ways of overcoming a difference rather than a disability.

 

We are all different in so many ways. None of us is exactly the same as anyone else. Many of the world’s most successful individuals have had to overcome differences. Just think how many ‘giants’ in business, politics and sport have in fact been surprisingly small people, dwarfed physically by their peers. The difference in size has given them an incentive to work harder at being more than equal to their larger ‘more normal’ peers. Differences help to emphasise our individuality, and allow us to recognize that we are special. This can usually be positive. But somehow it doesn't seem to work that way with hearing loss. We try not to be remembered for a disability. But that’s partly because we allow ourselves and other people to treat our problem as a negative. Why should we not do something different – work out how to spot advantages in the ways we overcome our different hearing? What’s to stop us feeling quietly confident, even proud of being able to show that we can connect with the world in our own  way?

If we want to promote this feeling of difference, rather than disability, there is one simple step we have to take.

We have to be more open. No point in doing everything we can to conceal our hearing loss – that only gives us a whole list of extra stresses to deal with. Being open, declaring without embarrassment or reservation that we have a hearing loss helps others who are trying to connect with us. If we try to hide our problems we give them problems – we make it difficult for them to know how to treat us. They may draw back, afraid to upset us. But being open puts all the cards on the table and allows us to play the game of connections in the way that allows us and them to express ourselves in a effective and relaxed way.

If you don’t already do it, why not give it a try? You will be surprised how many ‘doors’ it opens.

 

copyright John Marshall Mills 2007

all rights reserved

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09:46:30 o'clock GMT
Feeling Quiet

Most hearing aids need some kind of insertion into the ear canal - either for in-the-ear (ITE) or for a behind-the-ear (BTE) mould.  From personal experience I have found an interesting difference in the quality of my hearing between two BTE moulds that, to the eye, seem almost identical in their measurements. In fact there is probably no more than one or two millimetres difference between how far they penetrate. The deeper mould gives noticeably sharper clarity, but that can become painfully harsh where noise levels, and even individual voices, are loud. The shallower mould is not quite as clear but the tiny extra distance between the tip of the mould and my ear drum seems to provide a cushion that avoids any harshness or 'pain'. This raises interesting questions about the skills of the audiologist and the technician who makes the mould. I have never been aware of any measurements of the interior of my ear canal being taken by any of the audiologists who have looked after me. How much paste to inject into the ear to make a model for the mould seems to be a matter of judgement. But it takes very little variation to make quite a big difference to my hearing. I suppose that adjustments to the hearing aid can compensate for any differences. And yet when I try my two moulds with three different BTE aids, the effect is the same - the deeper mould is harsh, the other one is softer. Is there a lesson here? Perhaps one of our professional friends might be kind enough to offer an answer?

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12:57:28 o'clock GMT
Feeling Happy

Telephones are one of my biggest challenges. Not only is it hard to find the best way to hold the handset with my behind-the-ear aid, but the sound quality from most phones is limited. Result? I have spent a lot of time and cash trying to find a phone that works for me including a couple of expensive Bang & Olufsens both of which have easy adjustments for volume, but more importantly deliver hi-fi quality sound. However, two days ago friends showed me their latest acquisition - a BT answer phone with cordless handsets that offer a hands-free option. Brilliant. I have already made a couple of calls that I would never have attempted with my older phones. When I switch to hands-free it's as though the handset has a loudspeaker. The sound is quite loud, reasonable quality and I can hold the handset as close (or far away) from my ear as I need to make voices audible. For the record the phone (which comes with three handsets) is the BT Synergy 4500. I bought it at Argos. Only one problem: it doesn't seem to work with my T position.

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18:08:07 o'clock GMT
Feeling Quiet

The stars of this true story are a lively couple enjoying their golden years in the early months of 2007. They make their living from farming; they are full of life and obviously very happy together.

 

And yet she says: ‘I get very cross with him.’ Why? ‘Because he won’t wear them.’ Why not? ‘They’re no good,’ he says. ‘You go back for adjustments, surely?’ I ask. He shakes his head. ‘They just want to sell you these things. That’s all they’re interested in.’

 

He has two digital hearing aids: a well-known international brand fitted by a reputable high street dispenser. Total cost, over £4,000. He might just as well have saved his money. He doesn’t wear them. As a result he and his wife have no respect for the instruments or the company that supplied them; no confidence in the claims and promises on which they were sold. What about after-care? Hard to believe it was not offered. Adjustments should have made a difference. But something hasn’t worked, and this story is far from unusual.

 

Why do people who have problems with their hearing aids give up? This farmer and his wife would never accept unsatisfactory service from one of their trade suppliers. And yet with his hearing loss they have decided nothing can be done, and they just have to put up with it. Why has there been no follow up?  Why were they not told that problems are almost inevitable in the early stages? They would have been quick to accept help if it was offered in a way that they could relate to. Instead they are now convinced they cannot expect caring support because all hearing aid companies have commercial priorities. Their feelings are probably exaggerated by the self-consciousness that we all experience with hearing loss. We feel vulnerable; not in control. It’s a very private problem.

 

I’m sure they expected and hoped that his hearing aids would instantly make a wonderful improvement. That seldom happens. There is a new dimension to learn about. We have to adjust our thinking. In the early stages, we may feel strange, even a bit disorientated. So much depends on our personal contacts with whoever prescribes and fits our aids. We need careful coaching. But if we don’t get it, we may not have the confidence to insist on more helpful support to which we are entitled. In my experience, the farmer’s negative feelings are, sadly, quite common.

 

Fortunately there are many good stories where after-care is unstintingly given to help our learning process. I have been treated by quite a few audiologists over 30 years and almost all of them have been wonderfully helpful and patient with me; I have been very fortunate. Howeverthere is no denying that, outside the NHS, there are very powerful commercial pressures caused partly by a shortage of suitably qualified hearing professionals. More and more of us need their help. There seems to be more business available than they can comfortably handle. Unlimited time and patience is something they clearly have to balance against business objectives.

 

Here at Hearing Friends I hope we can share positive experiences and ideas that show the kind of best practice that can be available so that people like the farmer and his wife do not have to feel hopelessly frustrated or self-conscious. If they can share in our good stories, they can be more confident about getting the counselling and support they deserve. Best of all, they will know that they do NOT have to give up. Nor do any of us – ever.

 

 

               

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15:49:26 o'clock GMT
Feeling Quiet

It is easy to be self-focussed about hearing loss - and very understandable. After all, if connecting is a problem our first priority is trying to find ways to make ourselves hear better. We are unlikely to see it from the point of view of whoever is on the other end of the connection.  Even if it crosses our mind to do so we will hesitate to describe in detail the difficulty that we are having  - because we're too proud? too self-conscious? too determined to be normal? And yet, shouldn't we be doing everything we can to improve the connection? It's completely wrong to assume that other people won't care, won't want to be bothered. How can we expect them to respond in a way that will make us feel comfortable if they are not fully in the picture?

This came home to me very clearly in the comments I received from members of my family and one or two good friends who had kindly read review copies of my book Hearing For John. They found my descriptions of hearing loss very moving because although they know me very well, they had never imagined the kind of difficulties that it causes. The insider point of view had made them think about the problem and about me in an entirely new way. And I noticed almost immediately subtle changes in the way they related to me - nothing to do with sympathy, but simply practical differences in things they did (and now do) to improve the connections between us.

Sharing the insider view has already made a big difference to me. Which is why I am sure that the more we are prepared to contribute our own ideas and solutions here in HearingFriends, the more we will give others the insight they need to help us connect better. This is especially true for family, friends and people who work with us. With their normal hearing they need to be helped to understand in more private detail how hearing problems affect us. And if they become regular visitors to HearingFriends they will be able to pick up many of the little thoughts and tricks that can be so helpful in our connections. Most of us learn to live with hearing loss. Even so, there is a never-ending learning curve of new ideas that we can try to enhance our hearing experience. With our personal insider view, we are also very well placed to help people with normal hearing find positive ways to get through to us better.

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