Friday 23 December 2016

The Bottom of the Swimming Pool

I had a letter in the post today from Louise Goldsmith, a 21 year old who spoke so eloquently and soulfully it pulled at my heart. I don't know Louise but I can relate to her story. She has had severe hearing loss since she was seven years old and the letter is a candid account of this 'hidden disability' as she calls it, how she'd like to say her lack of hearing hasn’t adversely affected her life in any way, but, sadly, she isn't able to do this.

It's an insight into a world I know.

I'm not sure my hearing loss is as profound as Louise's – yet – and it certainly wasn't as bad when I was in my twenties, but it is a constant stress. I'm helped by amazing technology, not least my discrete Bluetooth hearing aids (I wrote about their maiden outing, here), the crystal clear headphones for the TV and the addition of subtitles. And I thank my lucky stars that I live in an age when I can carry out my entire communication through messaging of various sorts without ever having to put any of us through the ordeal of having to speak on the phone. Cochlear implants and Bone Anchored Hearing Aids are a possibility for the future and thus I live in hope that I won't become the little old lady in the corner whom everyone ignores, because it's easier.

Nonetheless, it's isolating not being able to hear and it affects every part of life – work and play. It's exhausting when every conversation is a missing word quiz and depressing when people think you are stupid and that you don't get the joke you didn't hear.

But it isn't all bad.

I have particularly noticed recently, probably because my hearing has plummeted lately, that my family have strategies to help me join in and that these have become automatic. It means that in my home, as long as I have my hearing aids, I don't have too much difficulty communicating. Reading Louise's flier, I thought it might be useful to share some of these tips before the typical large group, multi-generational, terrifyingly full of background noise festive party season is fully upon us. I hope it might be helpful to those who hear well and those who don't.

Here goes!

Please don't SHOUT! I totally understand how frustrating it is to be with someone whose every second sentence is, 'Sorry, I missed that,' and I understand the instinct to raise our voice. However, for many of us, it isn't that a voice is quiet so much as the speech is muffled.

The Clangers Poster
To try to give a picture of what it's like, imagine yourself tucking into your Christmas dinner whilst attempting to converse with your neighbour, all at the bottom of a swimming pool. New Year's Eve party? Add the Clangers to the bottom of the pool, dispersed around you, all talking loudly in sounds you can't understand but conspiring to drown out your neighbour nonetheless. If the person with whom you were trying to communicate simply shouted, it wouldn't make any difference to your comprehension. If however, they turned to face you and really enunciated their words, using more pronounced facial gestures, then you'd have a chance of understanding.

The trouble with shouting, apart from the fact it often doesn't help, is that it's really not very nice to be shouted at - particularly when everyone else is speaking at normal pitch. Because with the shout comes the facial expression: the screwed up, pained face. I know the intention is not to make the interlocutor feel awful but it makes me want to crawl away. After all, the conversationalist is clearly intensely annoyed (people only shout when they're cross, don't they?) and you are responsible for ruining their day, you and your sub-standard hearing - so why would you choose to hang around? If somebody shouts, I bluff that I've heard and feign a sudden need for the Ladies. 

Alter rather than Repeat: Often, people who struggle with their hearing miss the first word, or a particular word, and can't get the gist of the sentence because of that. Sometimes, the conversation can be saved simply through repeating it directly to the person in question but if this doesn't work, paraphrasing might be all that's needed to get around the troublesome word.

Face your Partner: For all of us, not just the hard of hearing, understanding speech is about so much more than the actual words spoken. We glean the sense of it through context and the 'music and the dance'. I remember a first hearing consultant saying to me shortly before I wore hearing aids that when he looked at my audiogram - a graph which represents the picture of an individual's ability to hear different sounds - he couldn't understand how I could possibly function but, he was quick to add, he saw this all the time. He said that it was a reminder to us that communication is about much more than words. In fact, it's oft quoted that 93% of what we hear is communicated through everything but the words. According to a certain Professor Mehrabian in 1971, 55% of communication is in the body language, 38% is in the tone of voice with only 7% being the words spoken.  

Now, the exact figures have since been rebuked but I think there is truth in the message. Certainly, that first consultant was convinced that was how people with hearing loss could manage surprisingly well. I would also suggest that people who are hard of hearing whilst perhaps not so good at hearing changes in tone of voice, might be even better at reading body language than this stat states.

And living proof of this is that I understand so much better if I face the person with whom I'm speaking. I don't officially lip read (although I'm about to learn and am ridiculously excited about the potential for my new skill) but matching the lips to the muffled sounds is often all I need.

Don't Walk Away! For the same reason, I wouldn’t even attempt to have any meaningful conversation with your back to whom you're speaking as you walk away.

Come and Ask! Likewise, my family have largely learnt that there is little point shouting from another room when they've been doing 'boys-or-teen-looking', in the hope I'll come scurrying to find said not-really-lost item. Even if I can hear the call, I won't know who or where it's coming from nor what it's about. If I'm really needed, my family have to come to me.

Well, we have to have some perks, don’t we…?

It does matter: And finally, and oh so importantly, please, please don't say, It Doesn't Matter. Because it really, really does. What might seem a seemingly inconsequential throwaway comment to you, is actually the stuff which makes the world go around. It's the context, it's the relationship, and nothing is more depressing than being told that what everybody else heard, isn't important enough to repeat to you. It's isolating and the more it happens, the more I become that little lady in the corner of the room, in the corner of life.

My hearing could be worse, I could be profoundly deaf, but it is a problem. For me, and everybody with hearing loss, please practise your very best diction this Christmas and look into our eyes when you speak.

That would be our very best Christmas present and an enormous helping hand through 2017.

PS There is good news for poor hearing. Increased deafness goes hand in hand with an ageing population and scientists and businesses have taken up the challenge. Breakthroughs are coming thick and fast and I am very hopeful for my hearing future and that of everyone currently struggling. Action on Hearing Loss (formerly the RNID) is a charity helping to find cures. If you haven't sent Christmas cards this year and keep meaning to get round to a charity donation instead, please consider supporting Action on Hearing Loss. More information here  

Tuesday 20 December 2016

A Day that Was

You know those days when you collapse into bed, pull the duvet up around your ears and, totally spent, realise that was a day that was? That day was Friday 9 December.

It started like any other day. Bags packed for Newark, boot loaded with books, back seat stashed with Christmas presents, and me, bursting with good intentions of not being late to meet my mum for lunch in our new favourite coffee house, Strays in Newark. I was thwarted, of course, by my just-one-more-email habit and thus screeched into my mum's drive a *little* later than intended. Still, we managed our sandwich, and threw in a bonus second coffee (and mince pie) at the end of the afternoon as well, so I think I'm forgiven.

Meanwhile, I had the small matter of my talk at Newark library. I was nervous. Even more nervous than usual. There's something about speaking in front of people you know which makes you feel much more self-conscious, don't you think? It's where the 'worst case scenario strategy' doesn’t work anymore: if I trip when I stand up from my seat and drag the chair leg with me to the front of the stage before propelling myself into the lap of the unfortunate person who chose a front row seat, then, scuttling back into position, forget why on earth I'm standing in front of all these people and wonder if they'd be happy to hear about the contents of my Christmas shopping list because that's all I can think about right now, - then hey! It's not so bad because I'll never see these people again.

Oh yes, I will.

And if you think that the above is a figment of my warped imagination, click here to see why my fears have valid substance.

In the audience were some school friends, including one I hadn't seen for thirty years (remembered fondly for walking me home from many a night out in Newark, we being the only two who had the misfortune to live an hour's walk from the pubs) together with the handful of others who constantly support my endeavours. While it warms my heart to know they are with me once again, I don't want to let them down. I recognised some lovely tweeps with whom I've bonded over cancer on-line (I told you cancer wasn’t all bad). One even brought me a present of gorgeous, home-made, paraben-free (oh yes) soap and lip balm. With her were a gaggle of fire safety officers, passionate about keeping phones out of cars. You would be wouldn't you, if you attended the road traffic accidents they do. And last but certainly not least was the local radio presenter, June Rowlands, with whom I'll be chatting on air on the 29th January. I was humbled that June took the time to come and listen and while it was wonderful to meet her in person, there was the niggling fear that five minutes into the talk, she would fiercely regret ever booking me in the first place. All this in addition to the many new faces who'd taken time out of a busy Friday afternoon in December to listen to me, when I suspect they had the odd other job to do.

It's fair to say, I felt the pressure.

I'm happy to report that my feet stayed firmly planted in position with no suggestion of a stumble (although I note from my friend's photograph that I was crossing my ankles and my physio - she's not strictly 'my' physio, you understand, but it feels like that sometimes -  would take a very dim view). I remembered what I wanted to say and said it in just about the allotted time frame. Although this is remarkable in itself, it isn't what will make the day memorable.

It was everybody else's input.

There were so many pertinent questions and anecdotes from people's lives relating to the themes of Glass Houses and Tea & Chemo and they kept on coming, so much so that I felt compelled to flash a glance or two at the organiser of the event to check it was ok that we were all still there. We spent a long time on the meaning of life, including near death experiences, but trust me when I say that it was a truly upbeat conversation about getting the most from life. I stood in that room in Newark library and all the rubbish, both globally and closer to home of the last few years, seemed so far away in those two hours. There was so much positivity even though people were talking about quite harrowing experiences. One lady even spoke about her mother who died as the result of a road traffic accident and how, it took a year, but eventually she felt compelled to talk to the driver of the car. She needed to let the driver know that she forgave them, that she knew it wasn't intentional. She had to express her forgiveness so that the driver could move on with their life. And thus so she could move on, too. I think there were a lot of us in the room holding it together at that point. What an incredible lady.

Some normality returned as I drove home, touching 50mph maximum because the run flat light had come on in the car. It's the second time in two long trips for me that this has happened. Me and this car do not get on. Still, at least we didn't have this little experience which is what happened last time the light came on. 

Only a few people beeped and gesticulated to make sure I was under no illusions that I am an idiot. I think I need to construct a sign saying that I am driving in the inside lane of the dual carriageway at 50mph because otherwise I will have a blow-out and that, my friend, is going to slow up your journey even more than the speed I'm currently driving which, by the way, is much more frustrating for me as I have to do it all the way home.

I didn't mind the elongated journey. I was happy to stay in the moment. There is much goodness in the world and it isn't the total bleakness we can trick ourselves into thinking. Ordinary folk, the ones having the ordinary days, are doing extraordinary things. People put up with so much in their lives and keep smiling, keep being kind to others and if we want to feel better about the world, I wonder if we should simply look to those closer to home.

There is madness. I have an enormous dollop of Weltschmerz sitting in my head at the moment, like so many of us. I really do fear that the world may not exist in any recognisable form for even my children's generation, for so many and varied reasons. But I came away thinking that people never really change. People are the constant and people are what might just make it work out in the long run.

That is why that Friday afternoon in Newark Library will be a day to remember for me.

Thank you so much to everybody who came along, to the library for their organisation, to those who spoke and those who listened and those who enthused. It was a day that was.