Thursday, January 09, 2014

Susan’s story - part 3

Susan’s story - part 3

by Susan

To read the previous part click here.

Susan entered into her 30s with an extraordinary sense of optimism. She was the mother of a beautiful daughter, Emma.

She and Charles were happy together and loved each other, or at least that's how it seemed to her. Susan felt fit and healthy. Thanks to near-daily exercise with a personal trainer, plus her own gym workouts, her figure was svelte and trim.

Gradually, since she and Charles moved into the family home a few years earlier, she started making a few friends in the surrounding area. Her circle of friends was expanding and she was invited round for morning teas, took part as a volunteer in various toddler and then nursery groups. Everyone said that she was extremely good with children, and not just her own.

The only minor cloud on the horizon was Charles' totally unreasonable refusal to accept that his wife was severely short-sighted. Her last prescription, when she turned 30, was R-11.25, L-11.75, which meant she could not function effectively without either glasses or contact lenses.
But when she tried to talk to Charles about it, Susan felt as if she had hit a brick wall. He would point-blank ignore any remark she made about her eyesight. If he caught her wearing her glasses for any reason, Charles would either walk out of the room or throw a temper tantrum - and then sulk for the rest of the day.

On more than one occasion in the past two or three years he had done so in front of Emma, leaving both Susan and her uncomprehending daughter in tears. Nor even Susan's decision - after her last check-up - to switch to new ultra-thin spectacle lenses, which appeared miraculously to halve the thickness of her spectacles, made any difference to Charles.

She tried to show him her new glasses: "Look, they're much nicer than the old thick ones, a lot more discreet don't you think?"
"Susan, I've told you many times, I'm just not interested, OK?"

Things reached the point where Susan only wore her glasses when in absolute dire need. Not only, she also became extremely self-conscious about wearing glasses at all, even in front of Emma.

Although she had been happy to let Emma see her with her specs on until she reached three or so, the moment her daughter was old enough to talk and ask Susan questions about it, she began to panic. What if Emma were to tell Charles that she often wore her glasses during the day? How could she explain to Emma what was happening between herself and Charles? Emma had been frightened enough by Charles' shouting; Susan wasn't sure what her daughter understood of the rows but didn't feel up to explaining what lay behind them.

So she switched totally into contact lenses. Not that it was a hardship. Susan had started wearing new long-wear lenses, incredibly thin and very flexible. She found she could keep them in up to 16 hours a day.
Not every single day, mind: sometimes her eyes did get a little tired. On those days, she simply took them out a little earlier and went to bed sooner. Or, now that Emma was four years old and at kindergarden for part of the day, Susan would take them out for a few hours and slip on her snazzy new glasses instead.

Life was still OK, on the whole. And, best of all, she had made contact with Angie again. Or rather, Angie made contact with her.
It had happened a few months earlier. Susan had been in the house, idly running a few coffee-cups under some hot water while Emma, then still too young for school, played with some of her favourite dolls in the kitchen. She heard the front door bell ring. Drying her hands on her dress, she went to answer.
Angie was standing in front of her, on the step: "Hello Suze, long time no see. Spare a cup of tea for an old mate?"
Susan stepped forward and hugged her friend. 
"Angie! My God! It's so nice to see you! How long has it been? Let me look at you." 
She cast around for more words. Meanwhile, she looked at her friend.

In truth, Angie appeared to have changed dramatically. It wasn't just that she looked older, thinner (much thinner) and her face was pinched or that her hair was surprisingly grey for someone her age, cut very short in a brush style. Angie looked smaller somehow, hunched, almost sad and hurting from some inner pain. She still wore glasses, this time a small silver metal-rimmed pair.

"About nine years, ten months and 14 days, actually," Angie said drily, "Well, are you going to let me in or not?"

They made their way back into the kitchen where, almost on auto-pilot, Susan put the kettle on and started brewing up a pot of tea. Emma, who had watched her mummy coming back with a stranger, looked on shyly. 

"Well, tell me what's been happening to you."
"It's a long story, Suze," Angie replied, and then fell silent. 

As they sipped their tea, they tentatively made conversation. At first, it was about old friends and what was happening to them now. Susan told Angie about her daughter. Emma carried on playing happily. Angie told her that she had lost Susan's address and had finally contacted her parents to find out where their daughter now lived.

Susan then explained about Charles, how successful her husband was, how she had been living in this house for four years or so. How happy things were.

"And what about you?" 
Slowly at first, then in a sudden torrent, Angie poured out her story.

After leaving on her trip round the world, Angie and her then boyfriend Duncan had travelled right across Africa. They dumped their broken-down camper van and made their way to India, where they spent almost a year "living around the place."

In time, about two years after setting out, Angie came home, leaving Duncan in stoned-out bliss in Goa. That's when things became difficult.
"I wanted to get in touch with you Suze, honest. But almost as soon as I got back, I fell into bad company. I moved into a squat and started living with a guy who was already in the house. He was into heroin. At first I had nothing to do with it. Then, after a few months, I tried it once. Then twice. Then three and four times. Within a few weeks I was totally hooked."

Angie's world became reduced to fixing up first thing in the morning, then going out to make some money to pay for her next fix. Often she stole, once or twice she took part in burglaries, a few times she even sold her body to pay for her drugs. Her boyfriend effectively leached off her.

During this time, Angie completely forgot about her personal appearance: "You should have seen me, Suze. There was a period when I didn't have a bath or wash my hair for weeks. There were maggots in the kitchen and we lived on a mattress on the floor, hardly bothering to get up. I didn't look after myself or my health, hardly ever ate anything. After years of never going to the dentist or brushing my teeth my teeth went bad. They hurt like mad, like all the rest of my body, but all I was worried about was where to find money and how to score next."
Susan listened, horrified at her friend's story.

Finally, about a 18 months earlier, Angie had woken up one morning to find her "boyfriend" lying next to her. He was dead, a needle still sticking out of his arm. An ambulance was called and took them both to hospital, the boyfriend directly to the morgue, and Angie to a hospital ward, where she spent 12 hours being cleaned up and deloused before she was discharged again.
"They had no space for a raving addict who might frighten their other patients," Angie said drily.

This was the last straw. As soon as she got out, Angie made her way to a drug rehab centre where she checked in and, overnight, stopped taking any more drugs. It took more weeks of pain in a detox unit before she purged her body of the immediate physical addiction, many more months before she felt remotely confident that she could sustain her clean state in the outside world.
Social services had managed to find her a half-way house and regular therapy helped. Then, when she felt ready, she moved into a council flat on her own. She found work counselling others in her same shoes. Meanwhile, she cleaned herself up physically, learning how to eat once more, taking care of her body a bit more. She had been living in the outside world for about nine months.

Unfortunately, not much could be done about her teeth. Angie leant forward, reached into her mouth with her fingers and tugged on her upper teeth. To Susan's horror, half of Angie's mouth appeared to come out in her hand.

"They had to pull out 10 of my upper teeth and seven of my lower ones Suze," Angie slurred, her cheeks suddenly collapsing into themselves, "And they say there's not much they will be able to do about the others. In fact, my dentist says I should be preparing for what he calls 'The Worst'. He gives me another two or three years. But as long as I can keep them, I will."
"And hey," she said, noticing Susan's eyes brimming with tears, "I've been clean for almost 18 months now. That's the best I've been in almost seven years."
Susan gulped.
"By contrast, Suze, your life seems a bed of roses. You've certainly fallen out of bed on the right side," Angie said, rather enviously.

Then, Susan started to tell her own story. He told Angie about Charles, about his unwillingness to accept her worsening eyesight and her need for glasses, his tantrums, the ridiculous routine she was forced into following every day.

Susan excused herself, went upstairs into the bathroom and returned a minute later with her glasses, handing them to Angie. 
"This is what's happened to me since the last time we met, not just Emma, the nice house, smart clothes and the car in the garage," she said.
Angie opened up the glasses, took hers off and tried on Susan's: "Christ Suze. They're hugely strong. Much stronger than mine. My prescription has changed hardly at all for the past 10 years. You must be totally blind without them. Charles is either a complete bastard or mad not to recognise what's happening."

Susan immediately felt strangely defensive about her husband. 
"Oh, he's OK really," she found herself saying. Angie, noticing that her friend was herself upset, changed the subject (in itself a minor diplomatic coup, considering how she had always been so forthright about everything).

They carried on talking for hours, interrupting only to feed Emma, who was by now demanding attention, and play with her. The pair went out to a nearby park with Emma, who rapidly became impressed by the way mummy's friend could ride higher on a swing than anyone in the play area. How she could do funny things with her mouth, and take her teeth out and how she was prepared to play hide and seek for ages and ages. And so much more.

By the end of the afternoon, Angie had made another friend for life.
When they separated in the early evening, Susan made Angie promise that they would meet up again soon.

On Charles' return, she told him about Angie's visit. He sounded strangely muted but agreed reluctantly that Angie should come round for dinner that weekend and stay the night.

It wasn't a huge success. Angie had recovered some of her inner hardness. While Charles drank copiously, she didn't touch a drop. That didn't prevent her from informing Charles what she thought of him, mocking his career and his somewhat right-wing politics, and telling him what a bully he was for refusing to accept that Susan's eyesight was bad. He said little that night. But when Angie had left for home on the Sunday morning, he turned to Susan and informed her coldly that he never wanted "that woman" to set foot in his house again.

From then on, when Susan and Angie met, it was either in London, or in secret, when Charles was out a work.

Despite his behaviour, Susan remained in love with Charles. So much so that when he proposed to her that - this time - they actively plan for a second child ("I want a little James this time") rather than let it happen by accident, she agreed enthusiastically.

Some four or five months into her 31st birthday, Susan discovered she was pregnant again.
The second time, Susan knew what to expect. She had enjoyed her first pregnancy very much and, if anything, the second one was even better. Susan felt comfortable in her new body and her high level of physical fitness meant she did not suffer from many of the niggly pains that affect some other mothers-to-be. In fact, to all intents and purposes it was a super-smooth pregnancy, with the baby expected on or soon after her 32nd birthday.

The one cloud on the horizon, again, was that her eyesight suddenly worsened once more. Six or seven months into her pregnancy, Susan made the journey into London, to see Ms Barnard, her optician. She liked Ms Barnard, whom she felt understood her and who had a good grasp of her problem sight.

The news was not good: "It's gone up by about minus 1 this time. That's not much. What concerns me is that every time we think your sight has finally stabilised it seems to get worse again. I just can't work out what's happening. What I'd like you to do is come back and see me in another six months."

Still, at least it was a good excuse for a lunch with Angie. "Never mind Suze, you'd look beautiful if you were wearing an old wellington boot on your nose. Anyway, who cares: you can still wear contact lenses."

Three days later - and another lunch with Angie - she picked up her new glasses and contacts. And the prescription: R-12.25, L-12.75.

Barely three months later she gave birth. Once more, it was an incredibly arduous birth, lasting 17 hours. To Charles' barely-concealed disappointment, it wasn't a "James" this time either but another young girl. They decided to call her Madeleine.

Emma, to Susan's relief, didn't seem to mind her young sister at all. Now five years old, she demonstrated no signs of jealousy. Indeed, she would often insist on holding her sibling and playing with her, showing remarkable gentleness towards her and insisting on helping her mummy with many baby chores.

The fact that that Maddie, as she soon became known, was the second child meant Susan was far more experienced about caring for her new daughter. She knew what to expect in terms of sleepless nights and adjusted her living patterns accordingly. In fact, Maddie turned out to be far less demanding than Emma had ever been. Far from waking up two or three times a night, Susan found herself having to do so barely once or twice. She loved Maddie fiercely and found herself perfectly content to be mother to a new-born all over again.

Despite her happiness, not everything was right as rain. Shortly after Maddie's birth, Susan's sight continued to go downhill. When her second daughter was six months old, Susan went back to Ms Barnard.

"I'm really concerned Susan. This is most unusual. This time, your sight has worsened by a further -1.5 in both eyes. That's the worst I have seen in you since you started coming to see me. I would like you to visit a specialist again for some more tests."

Again, Susan told Angie the gloomy news. This time Angie was less flippant: "I'm really sorry to hear that Suze. You can always count on me for anything, you know that."

Susan returned a few days later and collected a supply of new contacts. She had switched to one-day throw-away lenses, which Ms Barnard told her would be more comfortable and hygienic.

She also collected her glasses. Despite the ultra-thin lenses, they looked very fat. When she looked in the mirror, her eyes looked tiny. If she wore neither contacts nor glasses, she couldn't see a thing. Her sight was now R-13.75, L-14.25.

The appointment with the specialist drew no firm conclusions either, only tentative ones. After a battery of tests, he called her back to say that he could not find anything specifically wrong. 

But he had a theory: "One of the things we have found is that you do appear to suffer from a slight hormonal imbalance. I've checked with the hospital's blood test records over the past 12 months, since you became pregnant, and also looked through the case notes of your first pregnancy. It seems this imbalance becomes worse when you are pregnant and shortly after giving birth, subsiding after a year or so. We can treat the problem, although it's not a hugely successful treatment.
"What I'm wondering is whether this imbalance is responsible for the worsening of your sight. Unfortunately, I don't have any evidence either way. All we can do is continue to monitor the situation over the coming months. I would suggest you come in and see us every six months."

Once again, although she told Charles about her various hospital appointments, he appeared to be totally deaf to her worries and even refused to take time off from his job (his office in the City was barely a mile from the hospital) to come with her to see the consultant.

Susan knew things were getting bad. One evening, she went to bed early. While wearing her glasses in the bedroom just before turning off the light, she heard Charles coming up the stairs. In a panic, she whipped the specs off her face and hid them under her pillow. Susan heard the door open and her husband walked in. Aside from her bedside light, the room was in semi-darkness and Susan suddenly realised that she couldn't see him at all. She could hear him moving around, but apart from the noise to tell her where he was, Susan was effectively blind.

From then on, Susan started to devise special routines. She always placed her glasses in exactly the same spot inside her bedside table drawer. Her contact lenses were kept in the bathroom cabinet in exactly the same location, which she felt confident of being identify by touch. She always kept a pair of glasses and contacts in her handbag for emergencies.
Susan practiced finding her glasses or contacts in the dark, with a scarf tied round her eyes. She practiced putting on her contacts in the dark. If she took a shower, her glasses always went into the soap dish while she washed her hair, back on her nose when her head was rinsed.
Her precautions worked. She rarely if ever faced a crisis in terms of being left blind and helpless - except for her walk back to bed from the bathroom at night and back in the morning. But she had practised that too, and knew exactly how many steps it took to get from one spot to the other.

While Charles slept at night, Susan was able to attend to Maddie, while wearing her glasses, without giving the game away. Every now and then the routine slipped and mild panic would set in. On a couple of occasions, she was unable to find her glasses her glasses where she knew she had left them. It was as if someone had moved them, maybe just by a few inches. Overall, her tactics worked, however.

Susan often wished Charles would pay attention to what was happening to her, but was long reconciled to the fact that he had some in-built problem which she would never be able to penetrate.

All her preparations did nothing to prevent things getting worse. Six months later, by the time Maddie was a year old and Susan was 33, her sight slipped by a further minus 1.25 in both eyes, to R-15.00, L15-15.5. Half a year later, her vision had worsened to R-16.00, L-16.25.
However, Ms Barnard, who had been monitoring Susan's eyesight in conjunction with the consultant, pointed out to her that this time the worsening was just minus 1: "Maybe we're at the end of this cycle. I really hope so."

It seemed as if Ms Barnard was right. The next six months saw a further decline, but by just -0.75 per cent.

Susan, who had been seeing Angie every time she went up to London, allowed herself a small ray of hope: "Maybe it will stop getting worse from now on."

Angie meanwhile, had remained off drugs. It was three years since her awful experience. He appeared happier and was now training to be a social worker, working with people suffering from mental illness. Her teeth, as predicted had gone from badly damaged to simply rotten and, in a fit of bravery (or madness) Angie had simply told the dentist: "Whip them out once and for all." Susan had gone with her for the procedure and sat outside in the waiting room.

When Angie came out, she looked no different: "They've given me a set of immediate dentures, top and bottom, which I've got to keep in for a few days. It doesn't hurt at all, but my mouth feels a bit numb." They went to a nearby coffee bar where Susan hid her concern while Angie nonchalantly smoked a cigarette. In truth, Angie seemed to have regained much of her old spirit over the past few months. Her salt-and-pepper hair was now more salt than pepper. But she was happy. She had been going to meetings of a women's group in London and both looked and sounded more like the Angie of 15 years ago.

Over the next year, Susan's eyesight problems did indeed slow down. By the time she was 35 years old, it had gone up to R-17.25, R-17.75, just minus 0.25. The ray of hope, carefully nurtured, turned into heady optimism.

In all other respects, Susan's health was excellent. She had maintained her physical fitness programme and her figure was barely unchanged compared to 10 years earlier. Lots of money, 100 stomach crunches and an hour in the gym every morning can have that affect. All she needed was for her eyes to hold fast.

This was confirmed a year later, when Ms Barnard told Susan: "Good news. Your sight has finally stabilised again. No change this time."

It's funny how "optimism" can mean so many things at different times. To feel optimistic because her sight, now virtually useless without correction, was not getting even worse, would have shocked Susan a decade ago. Now, however, she was almost deliriously happy at hearing the news.

Things were not quite so joyful in relation to her children, unfortunately. At the same time as her own eye test, this time she also took Emma and Maddie to be examined by Ms Barnard.
For the past year or so, Susan had noticed that Maddie, now four years old, could not see some things very well and in recent months this had become a more serious problem. Even Charles, usually so wilfully ignorant of sight-related issues had remarked that his younger daughter appeared to be a bit "absent-minded".

The result in Maddie's case was a prescription of minus 2.25 in both eyes. For Emma, who was a beautiful nine years of age, there was a small shock too: she received a prescription of minus 1 per cent in both eyes.

Ms Barnard said: "I strongly recommend that Madeleine wears hers all the time. As for Emma, it's a matter for you. But would suggest the same thing."
When they got home and Susan told Charles what had happened, he swore: "This is a f*****g conspiracy. I don't intend to let either of my daughters look like four-eyed geeks. I'll talk to that bloody optician myself."

He strode off to the phone. A few minutes later, Charles came back looking somewhat thoughtful. Ms Barnard had probably given him a piece of her mind, Susan realised.
So it was that when the day after next, she took the girls to collect their specs and brought them home, Charles said very little about the fact that Maddie was wearing hers. But from that moment on, he suddenly became colder and more distant towards his younger daughter. It was almost as if Maddie's new "imperfection" no longer rendered her deserving of his unconditional love.

On Maddie's part, she didn't appear to notice her dad's coldness. Apart from a few tantrums and an initial tendency to take her glasses off and lose them round the house, she settled into them within a week or two.

Charles, meanwhile, began to lavish all his affection towards Emma. In part, it was because Ems steadfastly refused to wear her glasses at all: "Mum, I hardly need them. And I'm not going to wear them. Daddy said I don't have to either."

Even a call to Emma's teacher in school produced no results: "I'm sorry, Mrs XXXX", we can't force children to do what they don't want to do over this kind of thing. If things get worse, or Emma's schoolwork suffers, we will reconsider, of course, but one option might be to place Emma to the front of the class so she can see things a bit better. We'll just have to play things very carefully: Emma is at the age where we don't want her to develop a complex."

A complex! Emma already had a complex and refusing to tackle it meant it was likely to get worse. But without support from Charles, Susan felt powerless.

The following year brought more good news for Susan, but once again, less so for the children. While Susan's sight was unchanged for the second year running, Maddie's had gone up to minus 2.75 and Emma's was now minus 1.5.

Maddie took to her new glasses instantly. Now five years old, she started at junior school where all her classmates had ever known her with specs. Aside from some minor teasing, which she ignored, she was perfectly happy to wear glasses all day. Indeed, without them on, in the bath for example, she would pull comically funny faces and complain in a loud voice: "Mummy, I can't see. Where are my goggles?"

Emma, on the other hand, still refused to wear hers. Susan remembered what it had been like for her when she had similar eye problems at 16 and knew, more or less, what her daughter could and couldn't see. The evidence was apparent at home: sitting up close to the TV, the inability to recognise things at a distance, squinting.

Charles remained adamant that Emma should not be made to do anything she didn't want. This previously-stern disciplinarian when it came to insisting on certain behaviour from the girls, was prepared to bend over backwards to let his older daughter do as she pleased.

In fact, things spilled over into other forms of behaviour, in which Susan found that Emma and her father often ganged up on her and Maddie, whispering to each other and the stopping when she came into a room, or doing things together and leaving out mother and younger daughter.
She pretended it did not affect her. It did. 

"Suze, you ought to have it out with him," said Angie during one of her friend's forays into London, in which Susan poured out her heart. "You can't let him treat you like this. It's not right." But Susan felt unable to change things.

It was at this point too that Charles started talking about having children again. This time Susan was opposed to the idea. Not because she didn't want another child, though Charles' insistence on "trying for a little Jack" (he had switched to "Jack" after someone at a dinner party told him that James was a naff name) was annoying. It was more to do with fears for her remaining sight.

The specialist's warning five years ago had remained engrained in her mind. While there was no direct proof of a link between childbirth and the decline in her vision, Susan felt there was more than a coincidence in the fact that each time she had a child, her eyes became worse so rapidly, before stopping.

Try as she might, she could not persuade Charles of this: "Nonsense. As the man said, there's no evidence whatsoever of this theory. You can't possibly deny us the right to a third child on the basis of this mumbo-jumbo." 
But he refused to talk to the consultant directly, she noticed.

Shortly after her 38th birthday and a year after their last visit, Susan and the children went to see Ms Barnard again. Once more, she was given the all-clear. Maddie, now six, was up, however, at minus 3.25 in both eyes, while Emma ("I don't know why you're making me go mum, I won't wear them anyway") found her sight had worsened to minus 2.25.

Two days later she took the kids to collect their specs. Maddie had had lots of fun choosing a new pair, while Emma briefly perked up and took about 20 minutes to select hers, only to repeat - almost as a mantra - that she wouldn't be wearing them. Ever.
Nonetheless, she noticed that in the brief moment between the fitting at the optician's and when Emma took them off and crammed them into her pocket, her older daughter became momentarily subdued.

Meanwhile, she continued to face mounting pressure from Charles to have a third child. The two people she trusted most, Angie and Ms Barnard were both against it. Angie was outspoken: "Suze, if you do it, you're bonkers. Just say no to the pig." Ms Barnard was more reserved: "Of course, this is a decision for you alone, Mrs XXXX. My opinion is that you should be very careful of the sight you have and not take any chances."

But Susan, unhappy at the way things were going on in the house between herself, Emma and Charles, and his apparent rejection of Maddie, found herself wondering whether one more baby might really do such terrible things to her eyes.

They weren't up to much now, how much worse could things get? And maybe, just maybe, giving Charles a son (assuming it would be a "little Jack") would make him a happier person and take the pressure off the entire family a bit.
Susan found herself slowly being swayed in favour of just one more child.

To be continued ...

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