i’m fast asleep / my headphones / they saved my life

Sorry for no entries for days! Just about every two minutes or so I’ve contemplated a new entry, and contemplated how many of my massive readership I’m losing because it looks like another shipwrecked weblog. It’s not, I promise. Just that on reflection my last feverish entry (you have to get it out, waargh) may be a bit heavy for most, and unintelligible to a few. And a bit of a shock to some who know me. Sorry.
This one will be about My Ears. I wanted really to say that if, as a few of you have written back to me, you have Ear Problems too, that private ENT doctors, whether you pay them or not, smell, and audiologists are wonderful, so go and find one. If you’re in the UK, you might be able to find one locally on the NHS. They don’t go through the same intense 5th year course in “Snootiness Skills” as doctors do, especially the kind who decide they’d like state-condoned backhanders from anxious people – I suppose you would expect that to be a natural selective factor for the kind who will go private. The NHS ENT doctors are, I expect, perfectly likable people with cats and unpretentious hobbies (I’m imagining fishing) and slightly shabby wallpaper that needs redoing but that somehow they won’t get around to fixing for years; the problem is, you don’t get to see them for 18 months even if you go deaf. For my international friends, this is called the “NHS waiting list”. The ones you therefore pay, if you can afford it, to see earlier than 2006 are ruthless, take your money and snap at you, and conduct a hearing test with transparent headphones, while rustling papers on their desk. They then tell you your hearing will not return, tell you not to think about it much, as they get your coat.
I’ve so lost faith in the health system here: I sometimes pine for America’s system, ruthless and nasty to those not in work as it sometimes seems. Selfishly, if I had insurance through a job or family would things be better there, specifically for M.E.? Would my doctor have correctly diagnosed my cochlea damage within the crucial 48 hours and got me to hyperbaric oxygen or steroids to fix my hearing loss? On all accounts the US is taking M.E. patients and the issue of the organic illness more seriously, and putting some real money into research instead of psychologising everything within sight. I’m sure I’ll write more later about the psychologising of organic illness in Europe in another rant similar to the last entry, along with psychologists doing the same to benign conditions like someone like me being a girl (which I don’t think is fatal). But not today: today it’s An Ode to Audiologists.
I don’t have much content here really, except that “my” audiologist (and it’s a sign of my renewed faith that I think of her as “mine”) didn’t give one itchy look as I talked to her for hours, took every question and silly comment I made seriously, my half-baked internet-derived notions with interest, never patronised, and never once gave me the impression she had any other appointments all day. Ironically, I had to pay to get the first appointment with her, so I could get it in days rather than weeks/months/years, but after that you just blend organically back into the NHS, and everything else is free. A tiny bit of me is beginning to revise my recent view that it was all an impossible pipe-dream in 1948.
So my audiologist laughed at the costly but pitiful child’s handwriting pencil-drawn hearing tests from my private ENT appointment with Mr Grumpy, and ordered some more – within a week. She took special account of my anxiety disorder and my lack of mobility due to M.E., and booked a time that was just right. The tests were long and carefully explained all the way through, and, suspicious as I am of my own mind’s ability to fiddle any test to make my ear seem better, I was shown that they were accurate by post-testing demonstration. I really could hear the tones I “caught a whisper of and hoped I could really hear”, and my hearing really was gone where I thought it was. She was very patient and so sweet with me. And the results were so encouraging.
The results: I have a dip in my left ear starting at 2000Hz, dipping down (I think?) 40dB at 4000Hz-6000Hz and then for some weird reason spiking right back up at 8000Hz, which is the end of the graph. There’s a bit of low frequency hearing loss in my right ear, but nothing to get excited about. The hand-scrawled Rhoobarb-and-Custard profile of my hearing from my private ENT consultant (who’s probably now spending my fee on new golf clubs) said my hearing dived at 1000Hz and never returned, and was “profound”. So, either someone is affecting a miracle the ENT doc assured me “couldn’t happen”, or he just didn’t bother properly, and wanted to get home for his egg and chips. I think the latter.
So I do have some serious hearing loss, to go along with my M.E./anxiety/depression salad, but it’s not quite as profound as it looked. It feels bad, but my audiologist put to me an unpatronising argument that a lot of it is to do with brain-stem pattern recognition (note the difference between this and psychologising the problem: “you just aren’t thinking right, loser”). I’m still terrified whatever virus did it to me will do it to me again in the other ear, but more hearing tests might chide me to not be so scared in due course, and I’m meanwhile having some parasitology and vascular tests to rule out anything nasty, like a minor stroke – enough to keep my worry atoms functioning. The existing loss is where humans make, I think they’re called fricative sounds or sibbilants, and I know someone who could tell me if she’s reading this! Lip sounds, B’s and F’s and S’s. And I do have quite bad tinnitus, which is varying at the moment from a loud squeal/clang some days (like today) to more mild whooshes other days that I hardly notice for hours on end. And my most serious problem currently, the hyperacusis (sensitivity – ouch – to high frequency sounds and an inability to get the TV to a volume where I can both hear it and not hurt), the audiologist says is likely to be treatable. I believe her. I like her. How people are as people matters more than what they think they know, or how long they were trained to know it.
So this week sometime I’m getting a little plug to put in my ear, which will whoosh white noise at me. I’m supposed to wear it 8 hours a day, probably for a long time. It’s supposed to be pleasant, not unpleasant, and a relief from the spiky noises. And it’s free, part of Tinnitus Retraining Therapy, and I think they cost people $2000 in the US. Maybe there’s some reason to still remain here. If you come across me sometime, if I get better and out of this living room, and see a little plastic thing in my ear, don’t perform the aural Heimlich Manoeuvre on me, please.
So, getting to my point, which is like getting to the end of one of Escher’s staircases, losing my hearing has been a night-terror to me for months. I always said all that was important in life was “friends and music”, and I’ve lost many of the former through this rotten disease, and my inability to cope with the gap between the girl inside and the boy on the outside, the worry of relating to others and what they’re thinking about me. Sending that mail a week ago is my way of working on that, and I’m currently back into miracle-recovery mode over my attitude there due to (particularly) a few responses from people who have oceans inside them. As to the latter, it’s a terrifying thing to think I might lose music – truly not-worth-living feeling for the first few weeks of anxiety, after the deathly predictions of the ENT doctor. This won’t make any sense to someone who listens to the odd “Classical Relaxation” CD on the way home from work I know, just as I also won’t understand your fascination for clay-pigeon shooting – but that’s ok. Just assume for a second it’s like a death sentence to me. I usually can’t concentrate on conversation when some music I love is on – I can’t think straight, I get the most wonderful dizziness and I’m lost in it. I swear I could get lost in a city listening to Ennio Morricone’s Metti Una Sera A Cena, which deserves its own entry here.
So the point is: I’ve joined audioscrobbler.com, wired it into how I listen to music at home, and spent ages writing the simplest tiny php script (of which I know nothing – I’m a web-ignorant benny) to pull in live information to show what I’m currently listening to on the side panel of this weblog right now. You can also see my profiles at audioscrobbler and last.fm, should you be as bored as a melon. The “What’s Playing Now” thing apparently fades quickly, so might only show if I’ve been listening to music today: it depends on how many friends you have, and I don’t have many. Apart from you, dear readers, who if you audioscrobble I would implore to befriend me.
This is the thing: that doing this was scary for me. It probably won’t seem scary to you, or the list of what I’m listening to interesting to read. It’s more like my way of casting a net. Three people have written to me in the last week saying they have hearing problems too, and I think at least one has said (bless you!) that your approach is to listen to as much, and do as much ear-y things you can before (or in case) your hearing goes forever. Mine’s always been the opposite – to give up and not scare yourself by pushing fate. So this is trying to reverse the trend – my headphones as an act of tiny tiny faith from someone who isn’t good at it.

One thought on “i’m fast asleep / my headphones / they saved my life”

  1. When I got a bit upset by talking to you after you had been to that ENT
    doctor, I knew I could not blame you for it, so I thought it was a “can’t
    blame anyone for it” thing, now I guess I was a bit wrong…

    It’s good to hear that you are not just giving up music, and I know you said “…Mine’s always been the opposite – to give up and not scare yourself by pushing fate”, and it would be mean of me to say it’s not true, but I also know you as a very stubborn girl sometimes. It maybe has is not but when I read that it reminded me a lot of how you use to tell me to “just tell you what to do, that you like beeing told what to do…” but if I ever carefully try that, it’s kicking and whining (always done in a nice way) and if you really are told to do something you seem to me to be running of in the opposite direction 🙂

    I saw on the webb thing that you played Joannas Erin lots, yes it’s lovely, when she sings Erin, Erin… it gives me good shivers going down my back. But Flying A Kite! that’s what really made my week, it’s hard not put it on and just be *happy*

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