Tag Archives: deafness

Feeling the Storm

In Scotland yesterday it was unusually hot. The wind here is generally cool or cold on your skin, but for once it was like a tropical bath. Our bus stopped for a small group of people who took their time buying tickets. The sun burning through the windows became intense. Heatstroke started to seem like a real possibility, and when we finally got moving again, fresh air circulated through the bus and everyone breathed a sigh of relief. I didn’t think we could take many such hold-ups.

When we got to town, there were queues in shops where there are normally few people; tourists and locals ‘enjoying’ a day out. It’s odd when you think about it — shopping is the least fun thing to do when you’d rather sit in the shade with an ice lolly.

According to weather reports we were heading for thunderstorms, so it wasn’t surprising when the sky started lighting up that night. At 2 a.m. when everyone was in bed, the menace was profound… ancient forces were stalking the land. Like mice, we lay quiet in our lonely burrows, hoping to escape the attention of something much bigger than us.

Lamp switched off; curtains closed; all I could see was the repeated repulsing of outer darkness. A picture formed in my mind of houses huddled across the curve of the earth. Nothing dared go abroad while the storm stepped overhead with stately imperiousness. It was all very old and powerful, and I could imagine dinosaurs in the streets and in open fields, hoary heads swinging, on the hunt for prey.

In the midst of all this I started worrying about the sunflower.

It normally sits in the kitchen window but was crawling with aphids. I didn’t want the little horrors to spread to my chillis, so put the sunflower out for the night. Standing on the doorstep, I belatedly remembered the snails, and put the pot on the top shelf of a tall garden what-not which was standing beside the back door. Above my head, the sunflower stabbed the night with its loathsome burden of greenfly.

Now, in my darkened room, I had visions of this slender green rod attracting lightning. The aphids would burn up, which would be great… but, less happily, so would the sunflower. I could get up and move it to ground level, but told myself not to be so stupid. After all, the house is taller than the sunflower… if there’s any stray lightning around, it’s more likely to hit the roof.

Being all too aware of aforementioned ancient forces, you have no wish to stir out of bed. I didn’t want to be found on the doorstep the next morning as a small pile of ash covered in slime trails, so the sunflower would have to take its chances.

Lying in bed, not sleeping, you still worry.

The cats were indoors and in their beds, probably as glad about that as I was. Was everything unplugged? I reassured myself I was unlikely to be zapped and there was nothing I could do to make it less likely, while probably a lot I could do to make it more likely… then was disturbed by a memory. Something happened on a night like this years ago.

That other night, I lay awake with frequent flashes of lightning punctuating the darkness. The rain came down so hard it bounced off the tarmac. Suddenly there was a crash, causing me to leap up and run around to see if anything had blown up. It wasn’t till next day I found the aerial booster had stopped working, though the TV itself was fine! Ha.

I said there was a crash that night, but it’s not that simple. I’m profoundly deaf. I only know I started to my feet all of a sudden, and it wasn’t out of panic… it was because some internal alert had gone off abruptly, as yours would if there was a loud bang in your house.

Fortunately last night was uneventful. It rained, the sunflower fell off its perch and the aphids disappeared. There was thunder I couldn’t hear, which lacks all drama — yet I knew something big had passed.

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On Communicating

Was wandering the internet and finding so many interesting things that I got confused. Which direction do I go in?

This is the lesson I take from housework: don’t think about the fact that you’ve got all these things to do before the visitors get here. Just focus on hoovering the landing! Put the kettle on, hoover the other rooms, one by one. Then have a cup of tea! You get less tired and irritable if you stay in that relaxed frame of mind, and will be able to accomplish more.

The same thing should work when your attention is going different ways and trying to get its teeth into different things. Any lion could tell you that — you can’t chase down two zebras at once.

First blog post follows. Others might take a few days or weeks, depending on how far they have dispersed into the bush.

— — — — —

So, let us say… I was thinking about how it might be possible for a severely or profoundly deaf person to get more involved in conversation with groups of normally hearing people. I don’t pretend to have found an answer to that, but the hunt goes on.

As I mentioned to a friend, groups are tricky. People can be genuinely keen to include you and they’ll say something like “I’ll write you notes,” but that’s not how conversations work. They need to fill any potentially awkward silences, even if that means talking while someone else is trying to write or read a note. I’ve seen my mother trying to keep me in the loop by writing something while all the time a friend is blethering away… it’s hard for her to keep both of us happy!

People might start with good intentions of including me, but soon slip back to their usual way of communicating.

Things might be better for future generations at a time when everybody is learning sign language at school — surely then people will be more included (and more easily included) than not. That’s all the hope I have.

When searching around for ideas and inspiration, I found a Vimeo video on lip-reading along with its connected essay, Seeing at the Speed of Sound by Rachel Kolb.

In her essay, Rachel mentions how she sometimes feels guilt about going along with hearing conventions. You know it’s not simple, barely even possible, yet we go along with it, or try to. That sense of disquiet puts you at war with yourself. I wonder if I’d be happier if I rocked the boat more? On the other hand, you can’t engage with people or change anything by pitting yourself against them.

I know what she means when she speaks of complete communication breakdown hanging in the air — gosh, that feels bad. I had a dose of that a couple of days ago, which is what sparked off this entire blog post and my discovery of these links.

There’s a bit in the essay where someone starts typing on a cellphone and she feels like hugging him — it made me smile, remembering when the audiologist typed everything down on his computer monitor. The relief was amazing! You understand everything and it puts you at ease — you are more likely to laugh and engage, because the tension and awkwardness has been lifted and you feel more equal.

Anyway, I’d just got to that bit in the essay then caught the most fragile of squeaks at the edge of my hearing. Uncertain there’d been anything, I looked up and saw my mother’s grey cat staring at me.
“Yes?”
She squeaked again — this time there was no doubt.
“Just a minute,” I said. “I’ll get it.”
When I returned with her box, she looked at it, unfurled her tail, and went unhurriedly to take possession. I left to give her privacy, and couldn’t help thinking it was ironic that I was reading about the difficulties of communicating with people, but had no problems with a single rusty squeak. It does help if you know what the topic of conversation is likely to be!

Another post I came across today was A Tear or a Smile.

Both topics in that — white lies and responsibility — have been engaging my thoughts a lot.

When important, white lies don’t solve anything — simply causing confusion and allowing problems to steadily get worse… much like somebody regularly buying a brand of beer you detest because she thinks you like it. When she discovers the truth, months or years down the line, she feels like a stupid klutz. I know this from personal experience!

You can build on honesty and respect, even if slowly, but anything else is a shaky foundation or a total waste ground… yes, perhaps like ‘communication breakdowns’ where I escape to my lair rather than try to find a way. Sometimes, I guess, we have to start from rock bottom.

As for responsibility — I’ve been reading how it all rests with us. When something needs to be fixed or changed, we must ‘man up’ and get on with it. No question. I think, however, that we are responsible not just for ourselves but each other, and it would be dangerous to lose sight of that. People can go through a huge amount of difficulty that you might never be made aware of. What are we learning if we sit silently, each side of a chasm, and smile? I don’t yet know.

Profound Deafness: Social Interlude

I was sitting downstairs with our visitors over coffee, thinking “this could be quite nice,” but got bored because I didn’t have the slightest idea what anyone was talking about. It’s not really something you can bear for very long… the next time you look in the mirror your eyelids are heavy with sleep!

I found myself remembering what my audiologist said only a couple of months ago — “you will not be able to take part in normal conversation, but might be able to pick up some environmental sounds.”

People are odd when conversing politely; they look briefly when someone starts talking, then stare at the corners of the ceiling in a laid-back, thoughtful way. There isn’t a whole lot of eye contact going on, and that’s how I communicate, really. I wondered if I was breaking some social rule by looking round at everyone.

In the end I had to potter off… pretended I was just going to the kitchen, then disappeared upstairs! They said I didn’t have to go to lunch with them, so here I am.

I won’t say I’m relieved and cheerful that I’ve been let off the hook… it’s not that at all. You feel depressed for a time because you know you’re missing out. It’s not today’s lunch or conversation you regret so much as all the lunches and conversations in your life — the extra friendships you could have had. You still have friends, but there would have been more.

I will cheer up eventually, but you end up back at this place from time to time.

Ask Me No Questions

or

Hail Fellow Ill Met

 
A few weeks ago:

When we were going home on the bus, I was writing a message to Mum on our conversation notepad. An elderly man got on the bus and stood for a while, tucking his ticket away. I felt his eyes on me and looked up, and smiled. Then I went back to the message I was writing. Mum jerked her head towards him suddenly, and gestured apologetically, with a half-turn of her head towards me. I could imagine her saying, “I’m sorry, she can’t hear you.” He sat down across from us, where I couldn’t see him, and for the rest of the journey they talked politely, their voices lost in the roar of the bus. After a while I put my conversation notepad away, my message unread.

When we reached our stop and Mum moved towards the exit, I glanced at the man, intending to say goodbye. But he sat with his head turned away, so I said nothing. I didn’t ask Mum who he was or what they were talking about, and she didn’t mention him… he was just a passing ship.

 
Two days ago:

We were walking in single file along a narrow footpath, when we came across a bearded man on a ladder who was preparing to trim a hedge. He and Mum exchanged jolly-sounding greetings. Powered by her presence, I breezed past in my turn with a cheery smile. But I thought about how, on my own, I would either not look at him, or would raise my hand in a polite salute.

A little way further along, when we came onto the road, another man stood nearby. Again he and Mum made friendly noises. “People are so kind!” said Mum, as we passed on.

 
Yesterday:

We went into Costa’s for coffee, but it was quite busy. All that was left for us was a small round table for two, wedged between a lady in the corner (reading a newspaper) and two gossiping boys. The woman looked up and smiled, and she and Mum talked for a little… I wondered if they knew each other. Then the lady went back to her newspaper, and Mum and I wrote to each other in our conversation notepad.

“It’s hotter than I thought,” said Mum. “Have you noticed that the students get younger every year?”

“I never looked,” I said.

Mum rolled her eyes good-naturedly, while I thought about the old man on the bus, along with years and years of students passing me by, unseen.

After a while I said, “You know why I don’t look at people? I don’t want them to think they can speak to me just because I smiled.”

Mum laughed and shook her head at me. “They don’t always — and don’t smile,” she said. “Just observe.”

 
A small mystery cleared up:

When we left, the woman reading the newspaper didn’t speak to us again — she was a stranger after all. But Mum later volunteered the information that she’d told us (when we came in looking for somewhere to sit) she’d been watching a single student taking up a table meant for four.

Oh, I so know the feeling! Especially when we are meeting my sister, and the three of us have to huddle (with two shopping trolleys) round a tiny table for two, while a skinny kid stretches out blissfully in a tasty piece of café ‘real estate’… and stays there forever.

Lady next to us — I share your frustration.

Musical Distortions

I’m sorry if I seem vague at the moment — I’m not spending much time in the blogging world these days. But I know I’ll be back, as this is a kind of home.

I was listening to a Neil Diamond CD I imported to iTunes, and really enjoyed it for a couple of days, then suddenly couldn’t make it out. Songs I knew and loved for years sounded of nothing.

I realised that both hearing aids were sounding a little distorted, though still working. Actually one sounds just a little distorted; the other was really bad.

I’ve been trying to dry them out (though I did nothing foolish like leaving them in a steamy bathroom) but have had no joy so far. Switched to an older hearing aid (a spare). Played ‘Castles in the Air’ (Don McLean) and ‘Catch the Wind’ (Donovan), as I know them quite well… but I wouldn’t have known what they were if I couldn’t see their titles.

Then I switched to the other computer (just in case it was the first computer that was distorted, and not my aids!) and could just about hear Mamma Mia… but all of the twiddly bits were gone. You get the crashing piano chords and the voices when they are low (just about), but you can’t make out any of the higher bits.

I immediately switched back to the first computer and played Mamma Mia there (it should be better as it has a small set of speakers with amplifier)… and it did in fact sound better; I could make out a brassy quality where the high bits are meant to be.

But it brings home to me how much of my enjoyment of music these days seems to rely on my remembering how the songs go. If I can’t quite remember / equate it to what’s coming out of the speakers, then it’s just a wall of sound. My chances of getting to know a brand new song are low.

Have turned off iTunes (again)… am annoyed at the thought I have to go back to the clinic and sit in a beastly waiting room just to keep these hearing aids working. You think “what’s the point?” It’s like striving to keep something that was never really mine anyway. I should just give up; lead a quiet life (except for those songs that still play in my head!)

Away with the Fairy Moles

My brain is a radio… it is always on a music station, particularly when I switch off my hearing aids. Without them I hear nothing apart from the odd muffled thump, reverberation or bang. It’s as much ‘feel’ as ‘hear’. But that’s when my brain channels music, more than at any other time.

Mum said it should save me a fortune in CDs.

Today it’s something that sounds like a James Bond theme tune… I can almost see the sinuous dancing figures, flames, and suited spies. If I look a bit faraway, don’t be surprised! I can’t hear your voice, or the TV, or the kettle… this tune is stronger than anything else.

If I hadn’t listened to so much music when younger, I wonder what I would be hearing instead? I can’t imagine anything other than music.

Deaf Person Waiting

I’ve always had a problem with waiting rooms. For years I felt almost embarrassed to say “I’m not worried about the dentist… it’s the waiting room that gets me!” I can’t hear the receptionist’s questions or my name being called… I don’t even like the fact that the receptionist is in or so near to the waiting room, so that everybody else hears our loud conversation better than I do… and if I have to wait a long time, I worry that my name has already been called and I missed it. Just the sort of thing that sends my agoraphobia into overdrive…

There seems to be a vague assumption that the onus is on the staff to make sure I know when I’m called, and that it will all be sorted out by the end of the day… but this underestimates the embarrassment it can can cause, and how worried I get about it beforehand. That sort of anxiety will make me good for nothing during the actual consultation, and it could stop me seeking treatment.

My feeling is that it’s all so unnecessary, especially where audiology clinics are concerned. I’ve only once been in a waiting room that used some kind of visual prompt that it’s your turn… and that belonged to our old family GP back in Edinburgh, 25 years ago! (Why do things go backwards instead of forwards?)

I think there should be one good overall system in use for everybody, as otherwise you do get slip-ups where the nurse doesn’t realize the person in the waiting room is deaf, and goes out to call for that person anyway. Instructing staff “if you see from the notes that she’s deaf, do this other thing” is not enough.

If I had confidence that I’d be able to speak confidentially to the receptionist, and that I would know when it’s my turn to be seen, and that the staff won’t make a mistake and shout out my name anyway, I would be less anxious about visiting any GP, dentist or audiologist. (Or in fact any unit that uses waiting areas, whether medical or not!)

I knew it couldn’t just be me who felt that way. When I looked on the internet years ago, I found nothing of particular interest, but there seems to be a lot on the subject now. The following are a small selection of the links I found:

Dealing with Hearing Impaired Patients
Waiting rooms – the scourge of the hard of hearing
YOUTUBE VIDEO: Doctors Waiting Rooms
UK hospitals and GP surgeries are failing the deaf and hard of hearing

Sign Health: Why do you keep missing me? … a PDF you might want to Google for… I didn’t link to it as there’s a QuickLink available (long one!) Excerpt: “There are countless anecdotes about deaf people seeing their doctor, invariably receiving a poor service. But until now there have been no figures to support the arguments. This lack of data makes it difficult for deaf people to convince health providers that changes need to be made.” This is worth reading as it goes into a bit more detail… it talks about things that make me think “oh yes… I remember thinking that!”

This is My Experience Too

I identified with the following two posts from Bella Online’s deafness editor, though I’ve been deaf all my life (not late-deafened).

Deafness — a foreign country

Deafness and speech — mishearing

In this piece, the story about the checkout queue is one of those things that happen — strangers think you will hear them if they address you from behind, and some get impatient when you don’t. It’s one of those things wearing away at you like a dripping tap.

This one reminded me of the first part of my Landlady dream! I suppose it’s something that does tend to happen, unless you have a very strong personality and get yourself involved a great deal.

There are other articles like the above, indexed on this page at Bella Online.

Close to the Bone

Computer room is still gathering dust. But my personal journal is having a little bit of boom time to itself!

Five days ago I noted a dream in which two little boys of 11 were hanging around in our driveway, up to no good. Livid, I seized them by their collars and frogmarched them halfway up the road, saying I’d call the police if they did the same thing again. But I could tell from their unimpressed expressions that they’d be even more likely to be bad on our property instead of someone else’s. Then Mum came home in her car and started taking bags of food out of the boot. She saw the two boys lingering nearby, and greeted them like old friends. Soon they were chatting away as though nothing had happened.

I had mixed feelings: relief that things had been smoothed over, understanding that Mum’s way was the best way (and that she genuinely liked the boys anyway), but also a feeling of frustration — because I wanted to approach things from her more relaxed angle, but couldn’t. I couldn’t relate to people the way she did — their ways, words and impulses were behind a thick veil. Despite best intentions, all I could express was my frustration (as a stranger rather than a friend and neighbour) and that only made things worse.

Deafness and Depression

I found this discussion on the BBC Ouch! forum about deafness and depression; I particularly liked the messages from Number 23 onwards. And Message 27 is depressing!! Black comedy, if you like.

Things are said there that I’ve thought a lot myself over the years. Even on the internet it’s so obvious that therapists’ advice is geared towards those without disabilities and communication issues. When I saw a cognitive behavioural therapist years ago, I really felt we were not on the same wavelength. She was trying to persuade me nothing was as black as I was painting it in my mind, and I was wondering how black couldn’t be black, and if she even knew what the picture was.

I asked her once if she thought that maybe my anxiety and ‘panic disorder’ (which she’d diagnosed it as at the time) was caused by my deafness, and she said “oh, I don’t know!” in a tone that seemed to say, “well, perhaps, but you don’t have to be deaf to have issues, and let’s not get into that anyway!”

I found myself thinking of that exchange much later, when I read that cognitive behavioural therapists are trained to guide their clients away from the probable causes… we’re supposed to focus on changing our behaviour and the way we look at things. How it all happened in the first place is apparently irrelevant (and, I grant, often impossible to untangle anyway).

I said to Mum recently that a therapist would advise one to go into a difficult situation with the intention of proving that yes, one can handle it perfectly well… but it’s not so simple when that you are deaf and have poor speech, and have to go through the wringer merely to get fish and chips from the local takeaway. Generally you prove to yourself all over again that any two year old could do it better and faster. I don’t see how the fact that one is deaf can be ignored.

Some of those taking part in the discussion thread say that of course we have these anxiety or depression issues — we’re all of us being shaped to fit in that round hole, whether or not we’re round.