Lynne Farley: This is me, caught between the hearing and deaf worlds

Last week my (hearing) 6 year old daughter signed the song ‘This is me’ from The Greatest Showman. Perfectly.

I have been teaching her various signs for some time now, and she happily trails along to signing groups with me, keen to learn and show off her skills to anyone who will stand still for ten minutes, or failing that, just long enough for her to show them her two favourite signs which, if you’re curious, are Turtle and Horse.

I love that she takes such an interest and picks up signs so naturally, and with great interest I observe her interacting with all ages, both hearing and deaf alike with ease.

But whilst watching her last week, something hit me. I was envious of my daughter. Why? Because she is full of confidence. She knows exactly who she is. And that is something I have always struggled with.

Caught between the hearing and deaf worlds, I have often found myself wondering where I fit in.

On one hand, I am able to hear a decent amount – which I am certainly thankful for – but on the other hand, when it comes to conversations with people I don’t know, it is seldom of any use.

Sure, I can ‘get by’ a good proportion of the time with what sounds I am able to hear, combined with lip reading and well, pretty much just plain common sense, but this doesn’t mean by any stretch of the imagination that I can hear ‘normally’. Nor does it mean it is easy just because I do it all the time. It’s damn hard. And tiring.

Needing to focus and concentrate all your attention just to be able to make sense of what is being said can be exhausting. I now understand why I sometimes fall asleep on my daughter’s bed after the goodnight song, or why I feel the need to shut myself away from the world sporadically. My brain needs to recharge.

After a long time resisting, one day I finally gave up the struggle of watching yet another TV programme and missing a good percentage of the dialogue. It took me a few menus and screens (yes I’ll admit, I’m not particularly techie here!) but as I found the subtitles, it gradually dawned on me how much I was actually missing.

Two of my small people barely noticed them on the screen, but apparently they were clearly not in any way, shape or form, agreeable to the huffing and puffing teenager – mysteriously disappearing not long after.

One thing I have noticed is that a lot of people seem to expect you to just carry on and manage even though there are so many ways they could assist. But mention it and you risk disapproving looks and sighs of “do you really need it?” or “Haven’t you got those hearing aids in?” It infuriates me.

Just because I have have hearing aids does not mean I can automatically hear like a bat (Unfortunately I did not inherit that trait from my mother who, incidentally, could hear a grasshopper’s fart from 30 miles away whilst a marching band stomps up and down along a tin roof wearing steel toe capped boots).

Looking back, I have always struggled with communicating in groups, or with men who have deep voices, which lets face it, is most of them – my son’s being one of the deepest ever which makes him extremely difficult to hear.

I have always felt pretty stupid needing to ask someone to repeat something two, three or maybe even four times, watching them become more irritated. So this usually ends one of two ways.

1.) I smile, nod and pretend like I heard it just fine, or:

2.) They utter those dreaded words “it doesn’t matter”.

Whichever way it goes, the outcome is still the same and I have no freaking clue!

Just smile and wave boys. Smile and wave…

Skipper; Penguins of Madagascar.

Even though I can hear a fair amount of the noise of speech and I feel like I should be able to decipher it, my hearing loss is such that I am unable to hear all of the sounds necessary to put it all together and process those sounds into words and sentences.

It is very frustrating that I can hear voices and yet at the same time, often cannot make out a word. The only thing I can possibly liken it to, is perhaps being similar to hearing a foreign language where you can hear it, but have no idea what they are talking about. The sounds just don’t make sense to me.

Now I had never viewed myself as having a disability, being deaf, or being hard of hearing (that’s for old people, right?!) No. I didn’t need to wear hearing aids. I wasn’t deaf. I just needed to pay more attention. This is where my stubbornness kicks in.

An extremely controlling past relationship where my hearing was frequently used as a weapon in arguments – “I already told you, you just didn’t hear it” and “well you’re deaf, you just didn’t hear it right” – already had my defences up.

The stubborn me would refuse to accept there was an issue, and I would dig my heels in and protest even more. My parents suggested I get checked but looking back I think that this was just something I could control myself in a situation where I had none, so I kept telling myself I wasn’t deaf. I didn’t have a problem. I was certainly not going to go because I was being told to!

I think the first time I accepted I needed to go to the hospital was about a year or so after he left. It was the first time I had made any kind of decision for me. No one was telling me to go. I had decided on my own.

I didn’t really know what I was expecting, perhaps the same as my previous visits; nothing they could do for me, and to send me on my merry way. It only really began to dawn on me in the audiology booth that actually, I really did have some issues.

As it turned out, my hearing had deteriorated so much and in both ears now, that I was no longer just ‘ a little bit deaf in one ear’. It was there in black and white (or rather, little blue and red crosses and circles to be precise).

Moderately severe hearing loss.

Instead of being able to get by, I was now being told I needed a hearing aid in not just one but both ears. Walking out of the hospital I was in tears, I wasn’t expecting that at all. It wasn’t me. It wasn’t who I was. I wanted to be an interpreter and go back to my nursing career that I had before children.

How could I be an interpreter when I couldn’t hear well myself? How could I look after patients when I couldn’t take a manual blood pressure or take instructions and handover from a surgeon in a face mask? What if I couldn’t hear alarms on machines or missed vital information in a resus?

I am ashamed to admit but I started to feel very sorry for myself. I had always suffered from depression but it became much worse. I think perhaps the new information combined with years of abuse, control and rock bottom self confidence, just became overwhelming. I literally did not know who I was anymore.

I spent hours crying, overthinking, playing out scenarios in my head, beating myself up, and honestly, it didn’t get any better when I got my hearing aids. I hated them. I could feel them uncomfortable and awkward.

I left the hospital with two hearing aids and a paper bag containing leaflets, cases, and enough batteries to power a small village for a year. Okay maybe that’s an exaggeration. But it was a lot.

Gradually, they started to feel less alien. My brain seemed to be working with them and actually picking up some words. I could even hear things I hadn’t heard in years. Who knew my fridge was so loud! Panicking because the car sounded weird. Erm, no that’s how it sounds, you can just hear it now!

Lisa from the Simpsons’ whiny voice is now incredibly annoying, as is the ticking of the clock downstairs. How many things have I missed?

The more I have worn them, the more I understand them. Some things I can hear really well. Sometimes I find that I manage better If I take them out and concentrate on one to one and lip reading. It is still trial and error, they still aren’t ‘tweaked’ quite right but i’ll find a sweet spot with them.

My own personal journey of finding out who I am includes coming to terms with a disability. Yes. I have one. Its still hard to accept but then again I don’t believe I have ever really accepted myself. It is all new to me.

I have taken the first steps on a journey to take a good hard look at myself, and being deaf or hard of hearing is part of that.

I am still not entirely sure what I class myself as, especially in that little tick box you get on all those application forms, but I do know that for probably the first time in my life I feel like I am on the path to being where I am meant to be. Writing has given me a release and opportunity for some clarity in the haze I have been under for so long.

I may not be exactly where I am meant to be just yet, but starting to accept myself warts and all is becoming just a little easier each time I confront something. I am stepping forward. Slowly but surely. And that is enough. For now.

Lynne blogs at Three Kids and a Campervan – check it out here.

Lynne Farley has moderate – severe hearing loss and wears bilateral phonak aids (with pink and purple moulds!). She’s a busy single mum of three – and lives at home with her three kids cat and dog in Norfolk. When not at home she likes to be in their vw van somewhere in a field round a firepit! She can sign to level 2.