Making Yourself Heard

with a little help from our friends

My desire to bring you Nice News in the realm of hearing loss hasn’t had the fastest of starts. More accurate would be to admit that I’ve only mentioned the topic once since my grand announcement here.

That isn’t to say I haven’t been scribbling away on hearing related matters. I drafted a fair few posts at the back end of last year on the process of referral for a cochlear implant. I was excited. I wasn’t mad about the process of attaching something to my head and burrowing into my ear’s intricate hearing system (an exaggeration, it’s all very fine tools and gently, gently these days, but you get the picture) but the prospect of hearing better when I’m at the limit of the capability of hearing aids, was very appealing, she says politely. I was giddy with it.

I was also trying desperately to keep my feet on the ground, remind myself that there were many bridges to cross before we’d be signing up to any operation. Only 5% of people referred for a cochlear implant actually go ahead with it. That’s down to the capacity of the implant, and many personal reasons, too

My aids are brilliant. I’m so grateful for this century’s tech. But there is only so much you can do when hearing aids meet profound loss. I’m lucky. For some people, aids don’t help at all. It has a lot to do with the type of loss and the reason for that loss of hearing and I fall in the lucky camp. Hearing aids are the difference between me hearing passably in many situations with my aids in, and recognising only that I’m not in silence when they’re out, but that’s about it; the vague sounds are unintelligible.

I’m incredibly grateful for being in the lucky camp. But still, my hearing, or lack of it, is the underlying stress in everything I do.

• Will I be able to hear in someone’s kitchen? All those hard surfaces echoing, fridges whirring, taps running, doors opening and closing – you can’t stop the aids picking up those sounds too, in their mission to pick up the speech. I’m not alone in the hard of hearing world when I say that kitchens are my nemesis.

• What will the acoustics be like in the restaurant or that tiny café? Will I spend three hours only to return with very little idea of what anyone said?

• That film at the cinema? I’m in! “But you don’t know anything about it,” concerned friend or family member will say. “Doesn’t matter. It’s the sub-titled version, I’ll be able to follow it, which means I can go to the cinema. It’s worth it for that.”

• Stand-up? I love stand-up, particularly in small, local venues where those uber talented people perform before they get really famous, or are often just doing what they love at this level, with another job and another life and no interest in making it their raison d’être. There are few things more life-affirming than listening to insanely clever people weave a story around something that in any other world would be fairly innocuous, turning it into something that gives you cheek ache. It should be on prescription.

• Unfortunately, live comedy is a no-go area since my hearing deteriorated. The speed the comedian tells the story, without props to aid the lip reading, often jumping in and out of a more usual context, is a bridge too far for how I hear.
  
  A return to live stand-up after a successful implant operation and re-wiring of my brain, was one of my biggest ambitions for a new life with the implant.

All the tests over a few visits to a specialised NHS centre met the criteria for the cochlear implant route. I was daring to think we were on the path to a brighter, or should we say, louder and less muffled future for me. And for my poor family. And my poor friends!

Alas, no. Back to my brilliant aids. Unfortunately/ fortunately, team them up with lip-reading and how well my brain works with context – normal for people with hearing loss, but still, I can’t pretend I wasn’t proud at how well my little brain scored in those tests – there weren’t any guarantees that an implant would have a better result. We couldn’t take the risk. I failed to meet NICE guidelines. It costs the NHS about £20k for the fit and care around a cochlear implant, I learned. And you wouldn’t want to go through the whole cochlear implant process only to end up the same, or potentially with worse ‘hearability’ than before, they said.

Indeed not.

But I was devastated. I’d dared to hope that there was something better and the hope had been taken away – even when I reminded myself that no boring into my skull would be required, I was still bereft.

But you know? Onwards!

During this waiting period our Signing Sisters’ Sign Language practice had fizzled out as quickly as it had started. We had various other issues going on between us and were all conscious that a cochlear implant might, if not negate the need, at least lessen the urgency. So it dropped off the bottom of the more pressing to-do list, too.

But we are back to our signing practice now and here’s to that reaping its rewards.

Whilst cathartic to tell you why I went quiet on the subject of positive stories about hearing and specifically hearing loss in Nice News, it is a hearing-related Nice News that I wanted to share with you today.

It’s a story about ‘ordinary people’ doing amazing, altruistic things.

Let’s Make A Difference is a communication site on Facebook, using SSE (Sign Supported English) and BSL (British Sign Language)* – more on how that works, here. It was established by the impossibly young Eve, and has brightened up my little world for the past couple of weeks since I discovered her site.

Eve beams from my screen every day with ‘the day’s sign is—' and off we go. She signs a word several times over (for those of us at the back) and always with a smile on her face – unless the meaning of the word requires a different expression, of course 😉

The words, the signs, are random, but they stick. Something about the way Eve introduces and teachers the signs really works for me. And I can’t pretend my previous system was working as well.*

So, in Nice News today, I wanted to do two things.

Firstly, I wanted to introduce you to Let’s Make A Difference. If you struggle with your hearing, or know someone who does, or if you’re just curious and fancy learning a few signs, why not have a go? It’s quick and easy, really not daunting at all.

And I also wanted to thank Eve at Let’s Make A Difference. This is a free service she set up and judging by her 310k followers on Facebook, 620k on Instagram (!) I’m not the only one taking advantage of her time and enthusiasm.

Thank you, Eve, I hope you realise how you are changing lives and I hope you know how grateful we are.

And if you’re inspired to learn a ‘sign a day’, here’s a reminder of the links on Instagram and Facebook. Let me know how you get on!

Maybe you’ve been following for months already? Please share! Let me know how you’re doing!

* Footnote: I’d like to reiterate that SSE with BSL is a common way people learn signing for communication later in life. It is not the same as pure BSL (maybe I’ll progress to that some day…) which is a language that can be used without spoken language. SSE needs English to convey meaning, but BSL does not.