"Events Take an Unexpected Turn"

It was perhaps as well that the Internet was still in its infancy when Barbara Bellingham was born. Her mother Harriet, sitting sipping over-priced insipid coffee as she crouched over a clunky, chunky computer in an Internet café while she had trusted Barbara to the child’s grandmother’s care for a couple of hours, could not find out very much about her daughter’s condition. She had insisted that the doctor wrote it down, but still struggled to pronounce it. She discovered very little she did not already know. It was exceedingly rare, and could not be cured, but could be “managed”, and sometimes, if a child never exactly grew out of it, it could, if they were lucky, abate to a degree that meant they could live a relatively normal life. But that was not a given.

     Harriet had heard about children (and adults, come to that) who were hypersensitive to sunlight, and indeed to light itself, and who could only venture out after dark wearing thick opaque clothing and dark sunglasses. That was pretty rare, but what her daughter had was rarer. Harriet did not want her daughter to be a rarity. She wanted her to be a normal, ordinary, happy child, who would build snowmen and slide on the ice, and wear mittens her grandma had knitted for her.

     Before she was a year old she had almost died of what was not pneumonia, but gave a good impression of it. She survived, and some of Harriet’s friends said that she was a little fighter. Harriet had too much on her mind to pick a quarrel, but she wanted to scream that in the first place, a child who was too young to walk or talk had no concept of what was meant by a fight, and that in the second place, she did not want her to have to fight. 

     The hospital called in a specialist, and he called in another specialist, and they almost seemed reluctant to come to their conclusion, not just because they didn’t want it to be so, but because a thousand doctors could pass a thousand lifetimes and never encounter a child with Barbara’s affliction, and they were afraid of looking foolish.

     Despite the long words and complicated explanations, it was, in essence, an extreme allergy to the cold. “Could it be genetic?” Harriet asked. “My Mum is troubled by Raynaud’s syndrome.”

     “No, we don’t think it’s genetic,” the second specialist said, “And I must warn you that this is not something that can be handled with two pairs of socks or gloves and one of those little hand-warmers. Barbara was lucky this time. But it was touch and go. We can’t guarantee she would be lucky again. She must never even be in a chilly room, let alone outside on a cool day. We will carry out regular checks but I don’t want to build up any hopes.”

     Sometimes it was hard to believe, and not just because of not wanting to believe it. Though Barbara was a little pale, she did not give the impression of being a frail or sickly child. She thrived, and both walked and talked early. While she did not know any different, she was happy enough. Harriet was a single mother, but she was close to her Uncle Ben, and Harriet was well aware that he was a better father figure, especially to a child who was (oh, how she both hated and clung to the euphemism) different than her biological father would ever have been. She had her grandma wound round her little finger, and sitting on her lap, seemed to learn to read more or less by osmosis. She was home-schooled of course. They simply couldn’t risk her being in a chilly classroom, or an inattentive teacher letting her out into the playground on a cold day. And anyway, it wouldn’t be fair for her to be surrounded by children doing and enjoying what she could not. As luck would have it, though the word “luck” had a hollow ring, Harriet was a trained teacher.

     At first they even tried to censor the books she was read to and she read, and the TV programmes she watched, but it was her grandma who said, “We can’t carry on like this. I’m not saying we should – shove winter down her throat so to speak, that would just be perverse and cruel. But we can’t pretend it doesn’t exist – and this business of drawing the curtains when we don’t need to has to stop, too. Let the poor child at least have some light!”

     There were some difficult and heartbreaking conversations. But Barbara, like many children who grow up with mainly adult company, was precocious and nobody’s fool, and as Harriet said, when she was eight, “She KNOWS she’s not like other children.”

     “It’s time to tell her the truth – at least some of it,” her grandma said.

     “I’m afraid you’re ill, Barbara,” Harriet said, quietly, keeping her voice calm and practical with a massive effort as she dug her nails into her palms. “You have – something called an allergy,” (okay, technically it wasn’t, but it would do for the time being and the doctor himself had not hesitated to use the expression). “You’re allergic to the cold weather, and that’s why we have to keep you inside unless it’s warm, and you don’t go to school.”

     “Will I ever get better?” Her voice, too, was calm and quiet on the surface, but it suddenly seemed very small, and the expression in her saucer-like brown eyes was frightened.

     “There is – a chance you will,” Harriet said, unclenching her hands and taking her daughter in her arms. “Progress is being made all the time, and sometimes people grow out of it.”

     “Why – why me, Mummy?” It was not a resentful, peevish why me, but was hurt, and puzzled – and yet with a touch of defiance.

     “We don’t know, sweetheart. Even the doctors don’t really know. You were just – terribly unlucky.”

     “But – I’m not the only person in the whole wide world with it?” Despite everything, Harriet had to smile. “No, you’re not, but it’s very rare.” She thought better of saying something like, “And of course you’re the most special girl in the world to us.” Even at that age, though she was a polite child, Barbara was no lover of platitudes.

     Months edged and coalesced, and years passed. But it sometimes seemed as if everything was standing still, was more frozen than the ice that Barbara might only ever see on a screen, in a book, or through a double-glazed window in a room that was too hot for the others in it. Her check-ups showed no deterioration, but no improvement either.

     Like so many of us, Harriet didn’t believe in horoscopes, or certainly not the kind that were printed in newspapers and magazines, but couldn’t always resist a peep. “Guess what it says for Scorpio,” she said, to her mother and daughter, “Events take an unexpected turn. Well, THAT covers a multitude of sins!”

     “Uncle Ben says they’re crap,” Barbara said.

     “Don’t say crap,” Harriet rebuked her. She had been determined not to spoil Barbara or let her get away with things because of her condition – oh, that horrible weasel word “condition”.

     “Well, he does!”

     “And I daresay he’s right, but you can still mind your language!” As Ben’s favourite term of disparagement referred to bovine excrement, she supposed she’d got off lightly. 

     Yet it was Ben, of all people, who was to prove the horoscope right. He told Harriet he wanted a “private chat”. “Private chat” was by way of being code for a discussion that involved Barbara without her being present, though they told her a great deal.

     They met up in a local café, and Ben, after only the most perfunctory snort of derision at Harriet’s caramel cinnamon latte (he was a coffee purist) said, “Hear me out, while you digest that disgusting mixture. I know you have this qualification in Teaching English as a Foreign Language,” If she hadn’t had a mouthful of caffeine-infused foam she might have pointed out that now, technically, it was called Teaching English as a Second Language. “Well, Pat at work,” (he worked for a pharmaceuticals firm) “has connections with our Brazilian branch – and amazing work they do, too. Some folk reckon treatments for heaven knows what could be found in the Amazon if we only looked in the right places, and before they’ve chopped and burnt it all down!”

     Hurriedly swallowing her coffee, Harriet exclaimed, “Have they found something …..?”

     He clasped her hands. “I’m sorry, sis. I might have built up false hope there, and it’s unforgiveable. Not yet, so far as I know. But this still could be good news. There’s an adult education centre there, and they’re after someone to teach English – oh, not the scientific stuff,” he smiled, thoughtfully, “It’s weird, really, they can probably have a talk about advanced research more fluently than WE could, but the ordinary conversation is the problem. And let’s be frank, some of the spouses – and no, I DON’T only mean the wives, by any means! – would be glad of some project to interest them, too. So I at least mentioned you. Thank about it, Hatty! Don’t just dismiss it out of hand – a near equatorial climate, no winters ……”

     “No winters,” she repeated, dreamily, at first. Then she shook her head, “It’s tempting, but it seems – irresponsible. I’ve never been the impulsive one in the family.”

     He didn’t say anything, but she could tell he was thinking – as she was – that though she had, perhaps, always been the slightly more careful of the two, at one point she HAD been impulsive. “And even if I were,” she met him halfway, “I can’t afford to be – not now – and as you know perfectly well, though we’re not rolling in it, the can’t afford to be isn’t primarily about money!”

     “I’ll – at least talk to the doctor about it,” she said, expecting that he would, at least figuratively, fling up his hands in horror. But Dr Max Amory, with whom she had now become good friends, knowing that he was devoted to Barbara, at most flung a figurative finger. “It – has possibilities,” he said. “Time was when a “change of climate” was a standard treatment for TB and the likes and yes, sometimes, it certainly HELPED, even if it didn’t cure. Of course this isn’t the same, but we ought to at least make a few more enquiries.” They discovered that they would be living in a modern apartment block with expert medical staff on hand, even if they weren’t necessarily specialists in Barbara’s condition, “But come to that, neither am I, not really,” he said, frankly, “though I’ve done my best. It’s so rare that I doubt there is anyone who specialises just in it. This would all have to be planned very carefully, but if you – and Barbara! – want to move over there for a while, then it’s with my blessing. “

     Barbara, who spent half the year barely even going outside her own front door, looked as if seeing an angelic vision would have been positively mundane in comparison. Harriet knew that her mother had serious misgivings, but she also said, “In your position I might do the same thing, given the chance.”

     As Max Amory had said, it needed to be planned very carefully. Undertaking a long journey with a sick child – perhaps especially one whose illness was largely unseen and insidious – was a complex matter. The extra vaccinations she needed were a worry in themselves – though her illness didn’t compromise the immune system as much as some did, it was not the most robust, and there was always the worry of a bad reaction. But two months later, they were on their way. There had never been any question of selling their house, and Ben and Harriet’s Grandma promised to look after it. Even as Ben drove them to the airport, Barbara said, “I’ll miss that house – but oh, how glad I am to be out of it!” Though she was, to their relief, no pious Pollyanna, she was a plucky and pragmatic child, but whilst that never led them to forget just how unnatural her life was, it would have been impossible – and doing Barbara no favours – to dwell on it all the time. But when she said things like that, it made Harriet think that even though she knew this was by no means risk-free, she was doing the right thing.

     The flight to Manaus seemed to last forever, but it was Harriet, and not Barbara, who slept the most. The cabin crew knew about her health issues, of course, and at first, understandably enough, some of them had said they could do without the responsibility, but she won them over, and when they finally landed, they all said she must keep in touch and let them know how she was doing.

     They settled in quickly. Harriet’s work was pleasant, and her students keen to learn, and it made her remember why she had once been so keen to be a teacher.  For the first time in her life, Barbara went to school. There was a small, international school attached to the research facilities, but the first language of instruction was Portuguese. Barbara was still at an age when she picked up languages easily, and soon outstripped her mother in linguistic skills. For the first time in her life she made friends her own age – and was part of a little trio with a local girl called Maria, and the daughter of a Dutch researcher there, called Anneka. As she witnessed them chattering away together, sometimes switching between 3 languages, Harriet became even surer that she had made the right decision.

     Of course it still wasn’t a “normal life” and defiantly asking “what IS normal?” didn’t change that. She had regular medical check-ups. She knew herself that she couldn’t join Maria and Anneka when they went for a trip to an ice rink but insisted they did. “I mean – don’t think I’m not jealous, because I am, even though I hope they have a lovely time,” she told Harriet. “But it’s not as if their not going would do me one bit of good, so I’m not going to be mean about it.”

     Eleven going on thirty, thought Harriet, though in some ways, and it gladdened her heart, Barbara was starting to behave more like a child living a normal life. She knew in that heart that they could not and would not stay there forever, but though she had always been leery of the cult of “mindfulness” she had always known the advantages of living for the day and the minute and not in the world of before and after and what if, and it had become her default way of coping.

     Things were on an even keel, she thought. At least for a while. For a little while. That was until the day that the sky clouded over and the temperature fell within seconds. “This happens, sometimes,” one of her pupils, Diego, told her, “One of those quirks,”

     “They didn’t tell me!” Harriet exclaimed, panicking, and genuinely not sure if she had been told, but had been lulled by words like “extremely rare” when she, of all people, should have known that “extremely rare” did not preclude something happening. Without saying another word, and ignoring the concerned calls of her pupils, she ran out, and towards the school. Even she was shivering, though some of it, she desperately told herself, was because she only had a thin top on, and because she had got unused to even lukewarm weather. 

     Barbara’s teachers knew what the situation was. Barbara herself knew what the situation was. So what the hell was she doing, twirling round in the playground, looking at each desultory snowflake drifting from the contradictory equatorial sky as if it were a miracle, letting the little breeze tug at her hair? “It’s okay when it’s here, Mummy, isn’t it?” she asked.

     “You know bloody well it isn’t!” All her rules about swearing in front of her flew out of her mind in her fear. “You’re eleven, not four!”

     And then, in an instant, her anger and her fear seemed to evaporate as quickly as the plucky, displaced snowflakes as they hit the schoolyard. She did not blame her daughter, nor her daughter’s teachers, nor herself, and only saw and heard and felt her very soul reach out to and be at one with an infinitely strong, infinitely vulnerable child on the brink of adulthood whom she loved more than life itself. She saw her breathe in the cool air and poke out her tongue to catch the sparse snowflakes, and the moment itself seemed to freeze in time.

     But time did not freeze, and fears did return. Though Barbara seemed well, Harriet did, after a space of time that was both a heartbeat and a lifetime, lead her back to their apartment, and put an electric blanket round her. She called Dr Alvarez, though she knew that all he could do was to tell her to keep an eye on her and contact him at once if anything “changed”.

     Barbara slept well that night, but Harriet did not. She felt her skin, fearing the slightest chill, she listened to her breathing, fearing the slightest wheeze or catch.

     Then, the next morning, while her mother still slept an exhausted sleep she had fought against, Barbara got up, stretched her limbs, and got on with the rest of her life. Outside, the sun was shining brightly once more. She was quite sorry, really.