My never-again weight, part 3

This entry’s going to be tough. Bear with me.

I got old and married and moved to Hove – which my 20-year-old self will never forgive me for – but I’m still registered with Brighton Station Health Centre because it offers evening and weekend appointments. I am sorry to say that this is its only meagre advantage. It’s a minor injuries walk-in centre, run by Care UK, so I don’t have a set GP. As far as I can tell, I get assigned one randomly each time I visit, from an ever-shifting pool of apathetic and bitter locums who seem to resent my very existence.

I had to make the appointment in person, to bypass their telephone-triage booking system, because I’m deaf. I have a moderate to severe hearing loss of around 65 decibels, so I wear two hearing aids and I’m reliant on lip-reading in person, and subtitles on screen.

In an ideal world, my doctor would have glanced at my notes before I sat down in front of him. I know that he didn’t because he himself sat hunched up, scowling at his computer screen, with his right hand on his mouse and his left hand covering his mouth.

Not an auspicious start. Of course, I already wanted to walk straight back out the door again anyway. The Anorexia-voice in my head assured me that I didn’t need him, that the Occupational Health nurse was over-reacting and I was absolutely fine the way I was. This voice is my closest, constant and most loyal companion, she’s seductive as all hell and I love her dearly. Unfortunately, she also wants to kill me.

I asked him to move his hand.

“Why?”

POLITENESS? PROFESSIONALISM? BECAUSE I’VE BEEN DEAF FOR 33 YEARS AND MY HEARING HASN’T GROWN BACK YET?

“I need to lip-read.”

I took an extremely deep breath and told him everything: 20 years of bingeing and purging. Countless diagnoses of Anorexia, Bulimia, EDNOS, Anorexia binge/purge subtype, depression, self-harm and substance abuse. Never making it to Eating Disorder treatment because the waiting lists were so long. Three rounds of Fluoxetine and one each of Venlafaxine and Mirtazapine. Two paracetamol overdoses, ten years apart, because apparently I learnt nothing. Breaking free of the bingeing and purging cycle, but failing to acknowledge until that very week that I had almost stopped eating entirely. How I now needed help putting some weight back on please thank you very much.

He weighed me, took my blood pressure, and booked the ever-familiar ECG and blood tests. He also insisted on booking the referral to the Eating Disorders service that I had told him, unequivocally, that I didn’t want.

He asked me to crouch down on the floor then spring back up to my feet again. I felt like a broken puppet.

“You’re very underweight,” he concluded. “Do you know what Anorexia is?”

YOU DIDN’T LISTEN TO A SINGLE WORD I JUST SAID, YOU OVER-PRIVILEGED, MONEY-GRUBBING, SADISTIC GHOUL. I HATE YOU I HATE YOU I HATE YOU.

“Yes, that’s why I’m here.”

I didn’t cry, for two reasons. Firstly, my hormone levels at that weight were virtually non-existent. I was a highly-strung robot who hadn’t even cried at her own wedding. More importantly though, I was damned if I was going to cry in front of HIM. I literally bit my lip, picked up my bag and left.

Somehow, miraculously, I clung to my new resolve and kept the appointments for the blood tests and ECG. More on those next weekend.

In the photo at the top, taken in July 2018, I am still underweight. That was my very first vegan milkshake though, at the amazing Cactus Kitchen Gals in Worthing, and the smile is genuine. While this past year has been a gigantic uphill struggle, I have tried my hardest to document my highs so I can refer back to them during my lows. As I mentioned before, this story doesn’t have an ending. I’m still taking it one milkshake at a time.

Before the Devil Knows You’re Deaf

As this is only 2015 and Marvel don’t currently provide the script for real life, being deaf doesn’t give me superpowers. My vision’s pretty average. I’m not a ninja, or psychic, or telekinetic. Hell, I’m not even particularly empathetic.

Shocking, right? Pop culture’s been lying to you again. Being deaf doesn’t make me special. While we’re at it, it doesn’t make me brave or inspirational either. Brace yourselves: IT DOESN’T EVEN MAKE ME NICE.

My hearing loss is degenerative. Every morning, I am faced with the sobering knowledge that this is the youngest my face will ever look again, the highest my tits will achieve without surgery, and the most I will ever hear. I was never too precious about my face, but tittygeddon and my world going quiet are both fucking terrifying.

I wake up before my alarm clock goes off every morning because I’m so scared of sleeping through it. I can’t hear my watch ticking any more, or rain on my bedroom window. When I realised I could no longer make out the X-Files theme tune, I cried. Something beautiful is being chipped away from me, day by day, and the grief can be overwhelming.

So if there’s any way I can use deafness to my advantage, you can bet your ass I’m going to do it.

First off, occasionally strangers will get so frustrated with me that they end up uttering something along the lines of “Are you fucking deaf or something?” I live for moments like these. I drop my eyes, take a deep breath, then use my brave-little-deaf-girl voice to answer in the affirmative. I get the best results if I look slightly defiant, but with a chin quiver that suggests I might break down at any moment. Their faces are, invariably, priceless.

I pulled a version of this in Audiology when I had my last hearing aids fitted. One of the technicians asked me what line of work I was in, and I told them I was a live music journalist. The poor guy stammered and blushed his way through the rest of the appointment, and ended up apologising for the state of my hearing like he’d personally jammed knitting needles in my ears.

He hadn’t even upset me. I just hate the Audiology department because it’s full of old people and it smells of wee.

Back when I was far less law-abiding, I even used being deaf to jump trains. I kept my hearing aids out until I spotted an inspector. I’d wait for them to approach me, then affect panic and start laboriously faffing with the aids, making sure I covered them with my hands a lot so they screeched with feedback. Nine times out of ten the inspector would scuttle straight past me as if they’d spotted an Indiana Jones MacGuffin at the other end of the carriage.

I have worse examples, but those are fairly representative. Emotional blackmail, unwarranted sympathy and outright financial gain. I use my hearing loss as a Get Out of Jail Free card. Sometimes literally.

Disabled people are not one-dimensional angels. I may be deaf, but I’m also a dick.

Burn After Lip-Reading

Remember Ferris Bueller’s tuneless squawking on the clarinet, followed by that proud “Never had one lesson!” announcement to the fourth wall? Well, that’s me and lip-reading. I’m crap at it. Honestly, staggeringly awful. Amazing really, because I’ve relied on it for basic human interaction for the best part of thirty years.

As I’ve been partially deaf all my life, I picked up lip-reading naturally. Unfortunately, without formal training to consolidate my skills, I have literally no idea what I’m doing. Here’s my understanding of lip-reading:

1. I stare at your face intently while you’re talking.
2. Some sparkly unicorn fart magic happens.
3. I can understand most of what you say until you cover your mouth.

Trying to explain it any further would be like describing walking. You never have to think about it, and as soon as you do you trip over your own feet like the first victim in a ’70s slasher film.

If you muted the TV when the news was being read, I could translate the odd word or so. If you gave me the context of the bulletin, I could probably pick out some complete phrases, but that’s with a walking Autocue who’s paid to spout RP directly into a camera. Real life is much messier, and how much lip-reading helps fluctuates wildly.

Oh, and it’s exhausting. Sparkly unicorn fart magic must burn a dickload of calories.

Now, a short story:

In my first semester at university, one of the lecturers took me aside at the end of a seminar to talk about my “attitude problem”. I was confused because I really liked him; he taught development theory, and was bitter about having to commute from Peckham to teach over-privileged turds like me. I’d actually turned up to every single one of his classes, even though the SU bar was open during one of them, and a double vodka was only £1.60.

When I looked hurt, he elaborated.

“You’re always trying to stare me down. It’s very intimidating.”

“I’m sorry, I’m deaf. I’m lip-reading. You’re supposed to have been told.”

He frowned and shuffled through his class notes, looking for the register.

“It says here you’re dyslexic.”

“Not even close,” I snapped. “I can spell ‘phenomenology’, I just need to be looking at you when you say it.”

Once he realised I wasn’t planning to stab him in a conveniently deserted corridor, we lived sort of happily ever after, in that I got a Sociology degree I never use, and he probably still lives in Peckham.

This, however, is a perfect illustration of the big problem with lip-reading. If you fixate on someone’s mouth, they assume you want to fight them. Or fuck them. Occasionally both.

Sometimes I do, but usually I’m just trying to work out what the fuck they just asked me. If we’re in a loud pub and alcohol has been added to the equation, that can take me an extra couple of seconds to piece together. By the time I reply, I come off as flirty, aggressive AND stupid. The holy trifecta of bar fights. It’s a wonder I got out of my twenties alive.

Next week: why being deaf doesn’t make me special. Well, except to my Mum. Hi Mum!

Deaf Becomes Her

Before Channel 4 broadcast The Undateables, I’d honestly never considered myself as such. For the blissfully ignorant, The Undateables is a point-at-the-freaks dating documentary series, which has been running since 2012. It’s an often all too literal take on Blind Date, without our dearly departed Cilla to soften the cringeworthiness. If I went on it, I could call it deafsploitation. No, I’m never going on it.

When they launched The Undateables, all the PR bumf quoted a 2008 Observer Sex Poll, the results of which were so galling that they’ve stayed with me to this day:

“Seventy per cent of Britons would not consider having sex with someone who had a physical disability. Just over one in four would not rule out the possibility, while only four per cent have actually had sex with someone with a physical disability.”

Imagine, if you will, how devastating that opening sentence was to me the first time I read it. In my consummate naïveté, I had never factored my hearing aids into my personal pros and cons list. I thought my biggest barriers to bagging a beau were my wonky nose and dodgy sense of humour. And yet, there it was. 70% of people wouldn’t even consider a deaf dalliance.

I joked at the time that the judgmental majority were doing me a favour, skimming themselves off the top of my dating pool like dead bugs. And I do try to stay positive about such things, really. I’m so positive that if I stand still for too long, electrons flock to me.

No, wait, that’s asshats. I always get the two confused.

I guess the problem is that if you skim 70% off the top of your pool, then it’s not really a pool any more. It’s a puddle. And if you live somewhere as incestuous as Brighton, then it’s a really murky puddle. With hippies in it.

Despite my jokes, I mooned over my murky puddle for a good month after reading that poll. Then I dragged myself out of the sludge, determined to skew the final 4% statistic. I don’t hide my deafness from potential partners, but I won’t make an issue out of it either. I treat it as one of the many tiny considerations you have to take into account when dating someone. I’m deaf, but I also love Italian horror films and tattoos and disturbing dystopian fiction. I’m vegetarian, but I hate hiking. Actually, I’m suspicious of nature in general. I will kick your ass at Time Crisis and Scrabble, but I’m terrified of heights and Morris dancers. I own 930 DVDs, but I’ve never managed to sit all the way through The Shawshank Redemption.

I am disabled, but I am still a whole person. And if only 30% of people can accept that? Well I’ll take that 30% and go drinking and dancing with THEM. And our party will be the loudest on the street, because that’s what happens when you let the deaf girl near the sound system.

The full Observer Sex Poll 2008 can be found HERE. Next week: why lip-reading spells nothing but trouble.

Deaf Sentence

It’s finally happened; you covered your mouth with your hand one too many times. Or grew a beard. Or insisted on talking near traffic, children, or some hellish combination of the two. Actually, you could just be really mumbly. Whatever. The point is, I’ve had to tell you that I’m deaf. Here’s what you should avoid saying in response:

1) “What?”

A younger, angrier version of myself once vowed to punch anyone who said this squarely in their mumbly face. If you catch me on a bad day, I might still be tempted.

Why is it so bad? Well, because I’ve just confided in you about a disability that, while invisible unless you get REALLY close to my ears, massively affects my daily life. I’m on the back foot here, and you can’t even be bothered to make a decent joke. You just playgrounded me, and your lack of effort is insulting.

I believe no subject should be taboo when it comes to comedy. Take David Lynch’s turn as the desperately hard-of-hearing Gordon Cole in Twin Peaks. Even though he’s possibly the most offensive on-screen character since they let Mickey Rooney run racist riot all over Breakfast at Tiffany’s (don’t worry, I Googled it for you), he’s funny as all hell. He stomps around being in charge of important FBI things, yelling about chihuahuas and hitting on waitresses half his age. I can relate.

2) “Oh my God, I’m so sorry!”

I said “deaf”, not “dead”. Sounds like SOMEONE needs a hearing test.

3) “It’s okay, I never would have known.”

This one’s trickier, because it’s so well-meaning. I know what you’re trying to say; since the majority of my hearing loss occurred after I acquired speech, I don’t sound stereotypically deaf. You’re trying to be reassuring. Unfortunately, you just make me feel like I should be wearing a badge. Maybe one with a lovely Wal-Mart slogan like “Ask me about my sensory impairment!” And while that would certainly be helpful, it’s a little too National Socialist for my taste. While we’re on the subject, I have plenty of tattoos already and I don’t like camping.

I know, I know, it’s a minefield. We could have avoided all this if you’d just spoken clearly. In a brightly lit, completely silent room. Preferably with your hands tied behind your back. Ooh, like an interrogation cell in a hackneyed US crime drama. I could play the hard-boiled NYC cop with a hangover and 14 hours left to save the world, and you could be the beardy, heavily-accented terrorist cliché who keeps muttering about dirty bombs. And if I STILL can’t hear you, the guys behind the two-way mirror can probably help me out.

Coming up next time…SEX!!! And why it’s not just for people who can hear you coming.

Things to Do in Brighton When You’re Deaf

Hi. My name’s Emma, and I’m deaf.

I needed to get that out of the way, because it’s incredibly difficult to broach the subject in real life. When your disability is invisible, divulging it to new people lies somewhere between the strictly factual:

“Hi, my name’s Emma.”

And inappropriate over-sharing:

“Hi, my name’s Emma and I’m a bisexual sub with a minor Tom Hardy fetish.”

I wouldn’t class it as embarrassing per se, but it’s personal information that I feel uncomfortable relating to strangers. The deafness that is, not the Tom Hardy thing. Have you seen him in Legend? He fights HIMSELF. It’s awesome.

Anyway, when I do get around to telling people, it invariably comes out as “I’m sorry, I’m deaf”, which is so painfully British that I should be made to queue up politely for an Earl Grey enema while simultaneously refusing to eat the last biscuit. What I actually mean is “I’m sorry, I haven’t heard the last five things you’ve said, and this is starting to get really awkward”, because nodding and smiling only gets me so far before I start resembling a sycophantic bobblehead.

Incidentally, if you know me in real life and this is news to you, then you’re LOUD. You probably get even louder when you’re drunk, perhaps even to the point of obnoxious. The good news is, I love you for it. People with the enunciation of Brian Blessed are brilliant, and everyone else should come with subtitles.

So my name’s Emma, and I’m deaf. Not stood-too-close-to-the-speakers-at-gigs deaf, but proper hearing aids, lip-reading and sign language deaf. At my last hearing test – and I hate hearing tests because I always fail – I registered a 40-65 decibel loss. If you want to get really geeky about it, I HAVE GRAPHS.

Why am I writing about this now? Well, I could make some impassioned speech about disability awareness and the evil pig-bothering Tories cutting Access to Work, but I want to make this personal. I have two reasons:

1. Going deaf is scary, and isolating, and depressing, and if you continue to listen to your music at that volume then it’s my duty to inform you of What Lies Ahead.
2. When going deaf isn’t scary, isolating and depressing, then it’s really fucking funny. I think I need to remind myself of that whenever I can. That and the fact that I can no longer hear wind chimes.

Coming up next time, the three worst responses to “I’m deaf”, one of which can actually get you punched in the face. EXCITING.