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.

Passing Impressions

I’m sorry I’ve not been blog-reading much lately… it’s because I was spending time in Apophysis and Photoshop again! Those projects take up a huge amount of my attention, but things go in cycles… before you know it, I’ll be having a break and catching up with the blogs again.

For now, here are some random snippets from my ‘private journal’. I’ll just stick a pin in it here and there, and we’ll see what comes up.

Yesterday I asked Mum if Bella was the same as she was before, or if she had changed at all since going into hospital. Mum said with a broad grin: “oh, the same, definitely! Cantankerous.”

Moral of the story: your friends prefer you to be as cantankerous as you ever were… it’s a good sign, meaning you’re full of life.

-o0o-o0o-o0o-o0o-o0o-o0o-o0o-o0o-o0o-

It was so windy today it almost whipped away my washing, but I used dozens of pegs and brought them in again at night. The peg bag blew away three or four times while I was hanging the stuff out — went halfway across the lawn, scattering pegs everywhere. Eventually I had to lay it at my feet.

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Kept thinking I heard a humming spaceship this morning (the way the engine fades in and out)… then by pure chance I caught sight of a bright blue tractor through the trees. It was mowing the grass on the hill. The ‘fading in and out’ sound is from the way it circles round. I started to tell Mum about my discovery, but as soon as I described the sound, she knew what it was. I was quite annoyed at having my story spoiled! But it reminds me how others are more aware of what goes on around them, and are less mystified by certain sounds.

-o0o-o0o-o0o-o0o-o0o-o0o-o0o-o0o-o0o-

Saw a bit of the Antique Roadshow — they had Sindy dolls and clothes. Mum said “you and E didn’t like dolls, but you were very keen on our friends’ Sindy collection. It was a great collection!”

It was permanently laid out on the playroom floor, and I always made hotfoot for it when we visited. I was smiling in memory, and said we liked it because it was an entire world on its own. E had a Sindy at home, and I had Patch and Ken. Sometimes we had friends playing with us, and nobody wanted to play with Ken… that was like drawing the short straw. I said to Mum it was as though we felt a man’s life was no life at all.

Lost Tuesday

On Tuesday I shuffled furniture around, washed cat pee off plastic storage boxes, muttered crossly. Then got tired and watched Monk, followed by Charades (Cary Grant and Audrey Hepburn). Wasn’t thrilled by either. Monk was about a deaf lipreader who was the villain (having stumbled across certain secrets by lipreading through a window). Even while understanding that a good story is a good story, you get tired of certain stereotypes!

Monk and his friends have a horrible habit of giving their suspicions away to the bad guys. They never steal a march for long, having loud conversations while the bad guy is a few paces away, and I always feel like giving them a notepad and pen and telling them to write it all down. It’s more discreet.

We also watched Lost Land of the Volcano. I was reluctant, as for some reason I’m not fond of wildlife documentaries — and I’m particularly not fond of documentaries of film crews bravely battling against nature and the elements in order to make these documentaries. I’m sure if I was there, I’d be exclaiming all the time “it’s so wet, muddy, dark and full of strange night noises!”… but you can’t engage with others saying the same when you’re sitting on your comfortable chair waiting for the footage of woolly rats.

Anyway, Mum says we’re not going to York next time we go on holiday — we’re going to the Lost Land of the Volcano to cuddle those rats for ourselves. Knowing my luck, I’d see too many of those big black spiders along the way, baring their dripping fangs in my direction. One wouldn’t need special lipreading skills to understand that.

Felt very good today… no agoraphobia in the streets. I was a little nervous in the Argos queue, though, and when the girl checked with me what I was buying (one Seagate hard drive and a pack of blank DVDs) I couldn’t hear her. She could have been saying “our biggest wardobe and some aftershave” for all I knew.

If I ruled the world, you know what I would do… make communication more visual.

Have YOU Heard the Hum?

Was browsing The Deaf Blog today; noted the following articles:

‘Deafinitely Girly’ — new girl on the blog
Oh, I love writing and hate maths too! Maths was definitely something that got one yelled at.

Deaf model Kellie Moody leads fight to reduce stigma
“In retrospect I should have told the judge I would go to a speech therapist if he learned sign language.”
Excellent.

Have you heard ‘the hum’?
Hmmmm… well I’ve certainly heard the hum… along with roars, bumps, bangs, rattles… and felt them too. I’ve sensed a frenzied ‘rushing’ before actually hearing anything, and it’s followed by violent shaking, sometimes with a knocking sound. Sometimes the light outside (at the dead of night) brightens. I have been woken abruptly from a deep sleep, not just once, but many times, so I don’t think it’s all to do with the explanation that’s found in these articles. Also, though I have similar problems in this house, they were far worse in my old house. One of my mother’s friends lived nearby, and said she sometimes felt there was something going on in the neighbourhood! I blogged about it here: The Sinister Town of Darkness.