Category Archives: Hearing Loss

My iPad Has Found a Voice

Anker speaker and birthday cardMy birthday was some time ago, but there was a palaver with computer speakers having to be sent back. This is a little bluetooth one for the iPad that I chose instead. My sister ordered it in a lightning deal… it was 100% claimed in no time at all, but she was able to bag it when someone else let it go (thank you).

Now I’ve made it all blurry and coloured and you can’t even see it properly…

Truth to tell, I’m not sure why I’m telling the blogosphere about this, except that I’ve never heard anything from the iPad clearly… my hearing is too poor, and usually someone else has to tell me it’s playing sounds I wasn’t aware of.

There should be a way of muting it for good so it *never* does anything like that, and this particular lack in the iPad’s design makes me angry.

Now, I didn’t get a speaker for the iPad just so I would know to turn it off… that wouldn’t work anyway if it turns itself off after a spell without audio. No… I got it because I thought it might be nice to hear things on my iPad for a change, especially some of the tracks I bought.

It’s a lovely little speaker but it becomes a nexus of intense vibration when playing. Would you pick it up mid-song? I’m afraid to!

I was very happy when The Pachelbel Canon came on. Soothing, and a lovely birthday present, thank you. 🙂

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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 cafĂ© ‘real estate’… and stays there forever.

Lady next to us — I share your frustration.

Garden Puzzle

A few days ago we caught part of the Chelsea Flower Show on TV. I grumbled to Mum that TV subtitles have a habit of putting the wrong word, then are interrupted by a correction even when the mistake was easy to guess. You wish it would just get on with it, as it seems slow enough already.

I spoke too soon! During an interview with Stephanie Cole, she said (according to the subtitles), “my garden is quite of Excise.” I’m still trying to work out what that meant!

Inner Rabbit

This is me… wearing Euphoria perfume and making mistakes! Missing words when I write and adding wrong endings such as ‘-ing’ and ‘-ed’ where they aren’t wanted. Making a multitude of typing errors on the flat Mac keyboard (ones that I don’t make on ordinary keyboards… in particular I seem to hit the comma when I’m aiming for the full stop. Worse, I scatter the letter ‘f’ through my words when trying to find my place by touch).

Trying to find somewhere on my desk to lay out a sheet of paper I’m copying from, but there’s no room. Then I remember I’ve got a nice solid copy holder somewhere, but I’m not sure where. Find it on my desk, sitting beside me. Prop the paper on it, not bothering to fasten it with the bar. This won’t take long.

*** *** ***

It’s half past 8 on a Tuesday night — feels more like it was Monday. Golden sunlight in the dimming outdoors, glancing off the tops of the clematis and off the sides of the trees. Sky a soft pale blue. Sun was pouring down through the loft hatchway upstairs, pooling in the middle of the soft gloom of the landing.

TV downstairs is on — one of those music shows of Simon Cowell watching dance groups that all look the same. A very nervous girl has just walked offstage in a skimpy outfit she’s not comfortable in — she looks as though in her mind she has already lost, and she is probably right. I don’t hear their remarks on the TV, or any of the music… though the music phantom in my muffled brain is playing some dignified, ‘big’, dramatic voiceless rock music that I know well and can’t identify. It’s one of the tunes that’s often there. Makes you think of sun setting slowly over heavy, glinting seas.

I’m drinking the dregs of yesterday’s coffee — it’s like stewed sawdust in water. There’s milk in it but no sugar. There are pigeons in the trees outside. Pecking, preening, flying off occasionally but always coming back. This is their home. They suffer somehow through the frosts of winter and are still here in the spring. I watch them and they watch me.

Mum is playing solitaire on her laptop. She’s moving the cordless mouse on a tray on her knee and is leaning back. It seems tired and disengaged. She said during the day she had a headache — perhaps it has not gone.

*** *** ***

My eyes smart a little, especially the left. I was at the opticians today, having a ‘full’ eye test. At one point in the proceedings she was shining a very white bright light in my eyes. The left eye stood up to it reasonably well, but the right eye kept fluttering and closing.

I nearly started whimpering in the middle of my interview with the optician — she pretended not to notice, but her bright cheeriness and warmth redoubled. I’d been upset all morning. I felt tired of trying to talk to people, maybe about important things like my eyesight, and not hearing anything they say unless they repeat fifty times or write it down. You miss things and make mistakes because of it, which results in repeat appointments etc… the very last thing you want.

I’d even got tired of pretending that I’m on board with everybody else — the polite nodding and smiling that smooths most of it over while feeling confusion about who people are and how they spend their time. Pretending I know whether a stranger has said “may I sit here?” or “is anybody sitting here?” to which the answer will be ‘yes’ or ‘no’, or ‘no’ or ‘yes’, depending. And all the time, a guilty, creeping boredom and resentment that has to be disguised.

Today I froze in the headlights, and waited for it all to stop.

I sighed and cheered up when the optician said my eyes were very healthy. I notice she didn’t add “for your age,” but I knew it was true. With my floaters, dry eyes, varifocals and blurring eyesight, it seemed an unlikely diagnosis. Especially when she said “you see better than 20/20 with your spex [sic]“, which my mother said she thought only Superman could do. Last week she said she and my sister have high blood pressure and that I might too… but I haven’t yet, it seems. Maybe because I’m the protected youngest, or because I was so sluggish this morning. “I felt like roadkill,” I said, and Mum said “you looked it.”

I suppose the thought of being deaf AND blind terrifies me. I wouldn’t be able to read what people say to me, and that would destroy what communications I have. It would just be me and the ‘music phantom’ in my head, and vague rumblings and vibrations in my environment. Perhaps a cat on my lap.

*** *** ***

It’s 0:20 the next morning and I’ve gone to bed. A Piggin leans on my shoulder. I’ve drained a glass of slightly too acid tomato juice — won’t buy that brand again. My Kindle is next to my bed in its pink Shocksock… I’m reading a rather poor whodunnit set in Egypt. But it’s not so poor that I need to stop.

The Kindle changes the way I buy books. I nearly bought an L.E. Modesitt Jr hardback for ÂŁ1.50 from a charity shop, but when I noticed the stained pages, I put it back. I wonder, “do I really want MORE books taking up space, especially blemished ones that I’m too squeamish to touch? I could buy it for my eReader and highlight the bits I like, and leave it in my Amazon archive.”

It’s more comfortable reading and writing without my glasses. Everything at some sort of distance is a blur… shape, colour and a soft shine… no detail. Closer to, my hands and writing are clear. My long hair is a dark haze that frames my vision.

Last night I dreamed about white werewolves. As I watched a big one loping along, I grew nervous and asked myself why I was so relaxed? Then I remembered the werewolf was a friend who was helping me. I relaxed again, but then woke up and remembered the optician, and really didn’t want to go out.

Day came to an end eventually though, with golden sunlight and so on. It wasn’t all bad, any more than the werewolf was… though my inner rabbit waits behind my eyes, ready to pounce!

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.

Trying to Stay Abreast of Things

Young Diddums

Last night, just as we were turning in, Mum said “I don’t know yet if I’m going to the cat show after meeting the girls in town, in which case I’ll take the bus out and get some M&S food.”

“WHAT cat show??”
“Why, the cat show in the next town! … Oh. Did YOU want to go?”

Well, no… I’ve gone off cat shows big time. To be honest, I never enjoyed myself at cat shows. They are supposed to be sociable events where you meet other cat people and introduce your pride and joy to interested visitors. But I never heard what anybody was saying, and nobody had time to stand around and write me notes (even if they knew me), and so I stopped trying. (This after years of attending cat shows, so you can’t say I never gave it a proper go).

But I’ve been feeling even more than usual lately that I don’t know what is going on; I’ve been in a permanent state of confusion, and the Great Book Disaster is simply the worst example of it. I wonder if Mum used to make more effort to fill me in, and now she’s a bit more tired and less inclined to? Meanwhile my sister hasn’t realized this, and assumes Mum tells me everything.

I keep thinking, “was it my fault I didn’t know about this; could I have been paying more attention / realizing the significance of random details / joining up the dots a bit better / asking more questions? Or did I forget things?” Sometimes that happens — but I think in most cases recently, people simply haven’t been telling me.

I woke at 5 this morning under a cloud of gloom. I remembered all those photos of me as a young child, and even as a baby to a slightly lesser extent… no smiles: tense and anxious. I read somewhere that children hate being photographed — I should think ‘to the power ten’ for deaf children, who have even less idea than hearing children what is going on.

I’m not just sitting here muttering, though; I thought “I’m going to have to deal with this situation before it gets worse. So I’ll tell Mum, and I’ll tell E, but I won’t tell either that I told the other. That way, if they’re both making more effort and not assuming that someone else is filling me in, I stand a better chance of being kept informed by SOMEbody.” Somewhere I read: “deaf people are highly manipulative, but they have to be if they are to survive.”

DVD Subtitles: Information Needed

Where I live, it is difficult to obtain certain DVD titles from high street shops, particularly after the departure of Fopp and a couple of second-hand DVD stores. The supermarkets are small and tend to concentrate on the top titles of the moment – there isn’t much choice.

If you turn to online sellers, you trust them to give information on whether or not DVDs are subitltled. Unfortunately this information is quite often not given, and so we can’t buy the DVDs if we don’t know… or if we decide to risk it, it might turn out that we have wasted our money. I don’t entirely blame such sites; Amazon (for instance) seem aware of the issue, and have often said to enquirers that they can only give whatever information is provided by the studios and distributors. In one case I saw several DVDs by a particular distributor, so I emailed them direct to ask if they were subtitled. I got no reply.

I hoped I could obtain information from sellers on eBay, but, if anything, the situation there is worse. I might have been unlucky at the time I looked, but few were saying whether or not a DVD is subtitled. One said that the subtitles were ‘optional on/off’… seeming to fear that if he describes DVDs and videos as subtitled, hearing customers might assume that they are only for the deaf, and avoid purchasing them.

The other day when browsing online, I read a product review saying that a relative of the reviewer couldn’t watch an expensive box set because four out of six of the DVDs weren’t subtitled. Someone answered that the DVDs were surely worth more than one star, and the reviewer must have been in a bad mood when rating them. My jaw dropped when I read that!

These experiences frustrated me, and I joined DVD Subtitles. In my opinion, it’s one of the best things since sliced bread! It strives to keep deaf people informed of whether or not DVDs are subtitled – in full or in part (as sometimes the films are subtitled but not the bonus features). The site depends on information provided by individuals. People continue to contribute regularly, but it’s an uphill task… there are plenty of gaps in the information.

I wish I had joined much earlier. I always had faith that when people saw what was at stake, they would do their best to provide access, meaning that in time all DVDs would be fully subtitled… but, amongst other things, the (lack of) response I got from the studio caused me to doubt. I also assumed that most of my DVDs would already have been rated on the DVD Subtitles site – in fact, they were not.

I have now contributed information for exactly 50 DVDs… and I still have a way to go!

At a local charity shop I was delighted to find they had DVDs for ÂŁ2 each, and I snapped up several… they remarked on it after a few days, saying “you must have a lot of DVDs!” Part of me feels guilty that I spend so much on this, but it’s more than just spending or collecting; it’s something I feel strongly about – a small thing I can try to do for people.

There are other charity shops that regularly ask ÂŁ4 a DVD, but I only pay that price if there’s one I particularly want. I’m much more likely to buy DVDs when they are priced at ÂŁ2 or less, and the charity shop ends up with a lot more of my money! I even bought one I knew perfectly well wasn’t subtitled, just so I could rate it on DVD Subtitles. After all, the information that’s most valuable is the negative information… “don’t buy this; it’s a waste of your time.” (I’ll re-donate it to the same shop later!!) If we don’t obtain these dud DVDs, we won’t be rating them them, hence some of those gaps – however, funds and storage space are limited.

The DVDs in hearing people’s collections are of special value, as there’s more likely to be a selection of unsubtitled ones. Somebody will be looking out for those – and you might be surprised to find they haven’t yet been rated.