Alice sighed and tuned back into the conversation, which had segued from pregnancy to topical treatments and the most recent chemist-compounded concoction – to soothe, to numb, to desensitise – tried and discarded by Denise as ineffectual, tried and adopted by Maria as helpful.
‘That’s one of the problems,’ said Sally. ‘This thing’s a chameleon. Can’t be pinned down, won’t be properly understood by doctors, or by anyone, really. Not yet, at any rate.’
A sober silence.
‘Who’s up for a cuppa?’ Simone, hostessing.
‘Good idea.’ Sally stood. ‘Alice, let’s help.’
Different kinds of tea waited on the jarrah benchtop: herbal, green, English Breakfast, Earl Grey. A coffee machine made willing noises. A pity she’d cut out caffeine a couple of months ago on a naturopath’s suggestion. It might be a good idea to let your nervous system calm down. What else couldn’t she have? The wicked-looking sponge might have been her choice a year ago. But it seemed that Simone had also baked a gluten-free option; the aroma of the inevitable orange and almond cake filled the kitchen as Sally sliced it into portions.
Sometimes Alice woke to the fading dream-smells of pungent coffee and sugary pastry and almost cried at all she was denied. At all she denied herself. It seemed every woman here refused small pleasures as they made valiant stabs at wellness. Who knew if all that self-restraint made a difference? Though Atikah said she only had occasional tickles of discomfort now and swore it was the effect of the low-oxalate diet. And Fleur, who no longer came to the meetings but who held mythic status, was said to have completely recovered, though diet appeared to have little to do with it. She doesn’t know! Denise had exclaimed when Alice had asked what treatment worked the miracle. Fleur had tried different meds and changed the contraceptive pill she was on and one day she had no pain.
Alice tried not to hate her.
‘Tea or coffee, you two?’ Simone was pouring boiling water.
‘I’d love an Earl Grey,’ said Sally.
Alice selected peppermint, wanting the coffee. Then Denise bustled in, and she and Simone carried mugs and cake out to the lounge room, leaving the other two alone. It was something Alice had noticed about this group, the way the women picked up on each other’s need for one-on-one conversations.
The tea was scalding. Alice blew at it, looked out the kitchen window and into the bleached summer sky and thought about the question she’d been too scared to ask – not wanting to hear that complete recovery might take many years, or might never happen, not wanting to believe that might be the case for her.
But she must be brave, just like these women.
‘What did you do to improve?’
Sally sipped thoughtfully from her mug. ‘I guess I gradually worked out what made it worse and what to avoid. And one day I noticed it wasn’t as bad. But I had to think of how it was the year before, or the year before that – even the decade. It was no help to think about improving over weeks or even months.’
‘But the pain was still bad, right?’ Alice wanted to get the rest out quickly. ‘How did you handle having it all the time you waited, and without knowing that you would improve? I’m not as bad as I was a year ago, but it’s still so hard! My fanny and … that whole area keeps telling me that I’m full. Like a cup that’s overflowing before you pour anything into it. Some kind of weird nausea, a horrible too-muchness. Does that make sense?’
‘Sure, I know what you mean. I suppose … I just had to find a way to live with it.’ Sally leaned next to her at the bench and they gazed out at the view, towards the distant city. Cars throbbed in the distance. Parrots argued in a treetop beyond the window. ‘I was listening to someone talking about tinnitus on the radio and it sounded similar. The trick was about making the sound of the tinnitus – ringing, high-pitched whine or whatever – a background to your life. Accepting it made it bearable. Fighting made it worse.’
Alice questioned, just for a moment, whether it was her own daily battle that had made the aching and sizzling and knifing so vast that she was blind and deaf to the world. Whether fighting the pain had signposted it so stridently that she might as well have taken to it with her bright pink highlighter.
But, no, as reasonable as Sally sounded, there was a point to be made: ‘I reckon there’s a level of pain that’s impossible to make normal. And that’s not a personal failure. No-one can live with pure torture.’
‘I guess I need to be reminded just how bad it can be.’ Sally paused for a moment. Then, ‘You’re right, you know. I do remember.’ Her face was suddenly older. Careworn. ‘It’s just a long time since I’ve had it like that.’ She turned to Alice. ‘I’m glad that your physio is helping. And I’m glad it’s not quite as bad for you as it was.’
‘Thanks, Sally. It’s just difficult to know where to go from here, how to improve more. Living like this is no fun.’
The two women hugged each other, and Alice relaxed into the comfort of being heard.
‘Let’s go join the others,’ said Sally.
They walked through to the lounge room, to a sideboard where the four women hovered, shuffling food and mugs around. Alice accepted a piece of proffered orange and almond cake and, before her courage could fail her, voiced the other question that had been niggling at her over the last few months. ‘Has anyone else seen the gyno at the pelvic pain clinic?’
The visit to the clinic in Murdoch had been on Sally’s recommendation. It wasn’t perfect, she’d said, but the best option for now, if only to be better informed. At Alice’s initial appointment – her ‘Assessment’ – the female gynaecologist had moved her pelvis around and plunged a hand into her body. The fingers had poked at knots and ridges while the gyno and pain specialist talked about a nerve block, for diagnostic purposes, over her chilled legs. Nerve block: it’s a forbidding term, a terrifying thought, but what else can she do? It’d be a shame to fall at the last hurdle, said the specialist as she left the last appointment. Easy for him to say, she’d thought.
‘Oh, that gyno!’ Denise’s tone was scathing. ‘What the fuck? Does she enjoy hurting us or what?’
Alice decided to tell them the rest while they milled about, each grabbing a plate with their chosen cake. It might be easier while they were distracted.
‘When I didn’t have much pain with that point test,’ Alice began, ‘nowhere near as much as I used to, she thought I would be able to have sex again. She said, “Do you think you might be dragging this on a bit?”’ Her throat gripped. ‘She didn’t seem to understand that the pain is everywhere and all the time.’
‘Oh, she’s not as bad as that GP everyone used to go to,’ said Maria, flicking her black hair over a shoulder as she leaned forward. ‘Remember? The one who said to Fleur that she just needed a good root?’
‘You’re kidding!’ Was it insensitivity? Alice wondered. Was she jollying this Fleur along; trying to establish some kind of ‘we’re all women here’ rapport? It was surprisingly consoling to hear that other women had borne the brunt of such insensitivity.
‘I hate the way people think they can make these assumptions.’ Denise’s indignant voice. ‘Like that doctor I saw: “Do you think he’s the right man for you?” Really? And you know me, how?’
Atikah was quieter. ‘The GP I saw at the beginning said I was indulging it.’
‘What about Janey?’ Simone asked. The others all nodded and she addressed herself to Alice. ‘Janey was in the group a while back, then she just stopped coming. Anyway, she’d been told by a “healer” that she’d been sexually abused. It took her years to get over it. And it made her whole family second-guess themselves and each other, all the family’s old friends.’ Simone’s eyes were shiny with tears. ‘It was a disaster.’
‘I’m so sick of people acting like they know what will cure me,’ spat Denise. ‘And when I don’t try their bloody spiritual realignment or their miracle-working chiropractor or their fucking affirmations, they decide I really don’t want to get better. Doesn�
�t matter what you do, there’s no way to win that argument.’
‘They just want to help,’ Sally said, trying to calm her friend.
‘I don’t give a shit. Make your suggestion then leave me alone. I’m in the best position to decide what quack treatment I’m going to fork out my dwindling financial reserves on. Don’t they understand how scary it is to try another useless “solution”? The hope you invest in it, then how it crushes you when it doesn’t work?’ Alice saw Atikah and Maria exchange a glance, but nobody interrupted. ‘And while I’m at it, what about the people who think that if you smile or laugh you must be bullshitting about the pain. As if we don’t work so hard to try to be normal. To be a good person. Don’t they know what it costs us?’
The sudden tears were a surprise. But Sally seemed unfazed. She put her arms around Denise while she sobbed. They ate their cakes soberly, and soon Denise was wiping her face with tissues and laughing ruefully. ‘Sorry, guys.’
Here you go, the quotations from the Gaillard Thomas book :
… an excessive sensibility of the nerves supplying the mucous membrane of some portion of the vulva …
… The slightest friction excites intolerable pain and nervousness; even a cold and unexpected current of air produces discomfort; and any degree of pressure is absolutely intolerable …
So commonly is it met with at least, that it becomes a matter of surprise that it has not been more generally and fully described.
The 1800s. Ironic, hey?
Sally xx
A shiver rippled over Alice’s back. She shot a quick return email from her laptop: That’s it exactly, intolerable. Amazing it’s from the nineteenth century. What happened between then and now? Freud, I guess! Ali xx
It was an ongoing conversation between Alice and her new friend: the western history of vulvar pain. The way it had been detailed so accurately so long ago, its virtual disappearance from the literature, then its resurgence as ‘psychosomatic’ in medical articles of the 1960s and 70s, often from the States, littered with Freudian ideas and terminology: ‘psychological causation’, ‘unconscious conflict’, ‘sexual dysfunction’, ‘secondary gain’. And this purported gain? A way to avoid intercourse. Ha! She’d laugh if it didn’t rile her so much.
What is Somatoform Disorder? The question had burst from Ashleigh on one of her rare visits to the support group. Is it the same as ‘psychosomatic’? And Sally had talked about physical symptoms that couldn’t be explained by a medical condition, about how ‘psychosomatic’ is often used to suggest that psychological problems are being expressed through the body. That’s just not correct, Sally had said. Mind, body – it’s a complicated two-way thing.
Alice joined her hands behind her shoulders and stretched. Returned to her own body, the here and now. Her place at one of those high tables that suited her so well. Instead of sitting on a bar stool she stood in the café, her head at the same level, and did not stand out.
Waves of chat swelled and broke around her. Two older women in matching blue greeting each other with shouts of delight; a little boy running around tables and barging into a waitress – his mother remonstrating, ‘Now look what you’ve done!’; a tattooed couple turning to their phones, desultory, egg yolk and baked beans congealing on their plates.
The sea beyond the café’s glass was slick and clouds banked on the horizon. It would be sticky out there with no sea breeze. She drained her cup of its last cold gulp of coffee, focusing on its tang in her nostrils, its rich roundness on her tongue. The small acts of abstinence she’d tried seemed about as effective as attempting to put out a bushfire with a bucket of water. Why punish herself unnecessarily when there was so little joy in her life? Now she tried to build the deliciously bitter taste in her mouth and the expansiveness filling her thoughts so that both wrestled with the more demanding sensations sweeping her genitals. She would have to take it easy when she got home. Allow the deep, dragging ache to subside. Rest her intractable body.
She still wasn’t sure about Freud: so spot-on with some ideas, so ridiculously off-track with others, his theories twisting themselves into such strange shapes as they slipped into other cultures and languages, into medicine, into the mainstream. And what about Charcot? How did his ideas fit with the times? Or that terrible Isaac Baker Brown with his ‘hatchet-shaped’ cautery iron – how could his operation be condoned at a time when vulvar pain was also described in surprisingly modern ways? Why, it was in 1866, she’d discovered, that Baker Brown had published his book on clitoridectomy, yet it was in 1861 that gynaecologist J. Marion Sims – male, of course, despite his name – approached with insight, with understanding even, the spasms, the mysterious hypersensitivity experienced by his female patients. Alice had looked up Sims’s article and read about the woman that could be her, pictured herself lying on the couch as the gynaecologist examined her, imagined him writing later, by the light of a lamp – or was it candlelight then? – about her: The slightest touch with a feather or with a camel-hair pencil at the reduplication of the hymeneal membrane produced as severe suffering as if she were cut with a knife.
It was reassuring to know that once upon a time physicians were less suspicious, more … trusting of their patients. It gave Alice a strange and surprising kind of hope: maybe, one day, doctors and gynos would again take women at their word and treat them with increased understanding, even empathy. Because there were plenty of them, women with this pain: sixteen percent, Sally had stated baldly during their very first phone call. And when she herself, unbelieving, had finally looked up the articles mushrooming in medical journals – researchers, now absorbed in this enigma, spouting statistics and depressing words – she’d read the words herself: a lifetime incidence rate of 16% for burning, knifelike – there was that word again – pain in the genital area that lasted 3 months or more. Why, then, weren’t there newspaper articles? Letters to agony aunts? How was it possible that GPs and specialists in Perth didn’t seem to know about vulvodynia?
It wasn’t the first time she’d felt angry. At the bloody inefficiency. The appalling injustice.
‘Affection’, they called it, those nineteenth-century gynos. Their word for affliction: this affection has been encountered, doubtless, for all time, Sims wrote. As if there could be any affection towards this disorder! And her mind snagged on the image of Baker Brown again and on his radical, brutal surgery. Would there be answers in his writing? Some believable rationale for his extreme decisions, some comprehensible purpose for his barbaric actions? She’d find out soon enough. The thought of picking up the book she’d ordered through the uni library and the idea of reading about the cutting and the searing and the terribly mangled women brought with it a thrill somewhere between anticipation and dread.
And still, beyond the words from the past and the present, beneath the feelings that tossed her back and forth between fear and fury, there was that other thing. The something of which she could hardly conceive. The pressure that came with creativity – she knew it so well – the sense of compulsion without an outlet; all the time the pressure growing, growing … a domain distilling, characters finding inchoate form, a fictional narrative taking invisible shape …
The jangle wrenched her back to the café.
Alice pulled the mobile from her silk purse. How are you today? X. Penny. She thought for a moment, then: Same old … Just working in caf. Ena coming soon x. Pen’s reply, Hope it’s still easing. Damn nerve block! :-( Will call later xx.
Alice replaced the phone in her snug silk purse, which was only big enough for the essentials. Keys, coins, mobile, a card or two. Usually the precious gift sat on the bedside table, close enough for her to touch in the night, but she had brought the purse today to find out more. Little bigger than her spread hand, it was dwarfed by its mystery.
She logged out of her uni emails and shut down the laptop, her head cottonwool. The caffeine effect was waning, speedy thoughts and associations stalling. Maybe she would have to limit her coffee intake. Drinki
ng it again brought marvellous aha moments, but it also made her body race along with her mind, as if there were a finishing line she might cross first, if only she ran fast enough. And the prize? It could only be recovery, these days, not career ambitions satisfied or acquaintances maintained, when all she could do was say no to teaching opportunities, no to parties or lingering lunches; no, while she researched and thought and wrote, searching for a way to pick the lock of suffering.
Deeper relationships sustained her now – Ena, and now Sally, Denise and the others. Her illness had shattered the circle of friends who knew her mainly as the Alice in ‘Duncan and Alice’ and, in the aftermath, only these confidantes remained. And Penny, of course, though even she’d shown a hint of impatience lately. Did Pen wonder about Alice’s inability to regain health? Did she question it silently or with her snooty executive mates, who took meds when struck by fleeting ailments and, pinstriped, soldiered on?
Before I discovered this group, I felt alone, Alice told Sally and Denise when the three met for a picnic. Like I was the only person on the planet with this, this thing. They’d both felt the same, they said, and Sally had gone on to talk about the 1980s, before she even had a name for her suffering, and how crazy that had made her. It felt good, now, to share these feelings with these other women, to know that they understood her and she them.
And Ena? With Ena, Alice felt accepted, just as she always had been, and just as she was. Small wonder she visited her mother-in-law more often: donning one of Ena’s array of aprons, faded over the years of baking for income then pleasure, choosing a recipe from her scrapbook, trying to make out pale ingredient lists through layered splotches, melting shortening and stirring pudding mix. Then texting Duncan with the invitation, Ena’s tonight! and settling into an impromptu family meal where she could sit, briefly, having stood all afternoon. Just the three of them, talking literature and culture.
Eye of a Rook Page 17