Love on the NHS (19 page)

Avoiding gluten was not straightforward. There were the obvious things to avert - wheat, oats and barley. But he also had to read labels thoroughly. Mustard was his nemesis: it caught him out so many times. Mustard seeds themselves were harmless but so many mustards were thickened with wheat or another source of gluten. Chinese takeaways - and most others for that matter - had to be voided due to MSG used for flavouring being made with gluten. Most sauces too were not gluten free. Another food that caught him out often were fries from takeaways. He assumed they were fine but in fact most were contaminated with gluten from the oil that been used to cook battered fishes and sausages too.

The worst was over when he eliminated the gluten from his diet but he was never absolutely in the clear. He did not quite know why but he would find it hard to concentrate. By stopping eating eggs he improved - and also managed to get rid of a bulging stomach, something he read was a symptom of egg intolerance. But he still felt sluggish. Using deductive reasoning, he concluded it was probably because of carbohydrates. Whenever he ate a carbohydrate such as a potato, sugar, rice or corn he would for hours subsequently suffer rushes of blood to the head and restlessness and weightiness all at once.

A lot of information on the internet aided him and when he discovered the specific carbohydrate diet, he began to follow it. He was eliminating casein, the protein in milk, as well. In his head he called it the Luke Jefferson diet. And why not? The sweetest sound to any person must be their own name, especially placed before something grand. He was mentally and emotionally better now but his physical constitution did not fully benefit.

Certainly his digestion was comfortable and he lost weight. However he had less energy to perform tasks at length. Walking far was tiring. Running or playing sport was out of the question. He dreaded of what might happen if he ever had to work in a manual role. The specific carbohydrate diet was designed for the well-being of one's soul first and foremost, Luke surmised. It could prevent many illnesses and weight loss was a given but physical needs extend beyond those parameters If Luke could have spoken to the millions of people who wasted thousands on tummy tucks and fat removal surgery, he would have told them, "All you need is to eat nothing but natural meats, vegetables, fruits, nuts and seeds for a month or two. The weight will come off easily!"

Luke could walk further eating anything. It's just that the accompanying mental fatigue and emotional wariness were hard to live with. The areas of acquired weight that would not shift were burdensome too. If he ate only gluten-free he could run better and walk at his best but the mental tension he felt could still be overwhelming. He at times juggled between different diets. Sometimes emotions and mental agility had to claim priority - and then the specific carbohydrate diet took precedence. Sometimes the body: and then the gluten-free diet was his choice; but when he became depressed with life as we all do, he would give up and eat all and sundry. He would usually not do so for long but at times it was more convenient when difficult to find foods on a holiday or if with people who had no comprehension of his diets and placed great value on eating foods Luke should not.

As Luke's understanding of the gluten-free diet progressed, he learned that corn and rice had gluten in them; far less than wheat and other sources and so not producing major reactions but it was still there. To be very strictly gluten-free, then, he had to eat only potatoes with vegetables and meats. Yet even eating only potatoes for a carbohydrate source would usually get the better of him. He would feel his nerves fraying and again would return to the specific carbohydrate diet.

Even while strictly following the specific carbohydrate diet and eating a lot of protein-rich cuts of meat, Luke still was weaker than most people his age. He would have struggled at any job requiring lifting, bending or frequent physical movements. It was hard to live with and at times made him want to not live - but he did try to believe he must be alive for a reason, no matter what hand the Gods had dealt him.

XXXII

By now Luke had met Clara on a few occasions and she had begun to familiarise herself with his situation and problems. She told him she ask for an assessment of his needs to be made by an expert on Asperger's syndrome and Luke, though uncertain of why or what it meant, consented. When the meeting with the expert came, she recommended Luke should be moved to a sheltered community for people with Autism where staff came into residents' houses everyday - and Clara would have happily agreed to this. It took a lot of angry complaining from Luke's mother to defend him against this attempt to institutionalise him that was dressed up as "doing what was best for him". In time Luke grew to never trust people who said they were acting "in your best interests" - this was always said when they were or attempting to taking control of your situation, and nobody spoke for Luke except himself.

Besides Luke's grand miseries he had his petty ones too - though sadly they probably were the cause of the grand ones all too often. Since he travelled on the bus almost every day, he had grown accustomed to it - as much as anyone could. People who travelled in cars or trains for most their journeys had no idea what it was like. Even if they had in the past, it had changed so much. Riding one regularly, Luke become used to the feeling of stress. Arguments on mobile phones were a familiar sound; the tawdry gossip exchanged between teenage girls ever present and if those did not annoy a passenger there were always the he arrogant bus drivers. They would not stop for people who put their hands out a little late or shout at other drivers when they were at fault. Teenage boys frequently boasted to one other of the amount of sex they would have with their crushes and old people would look maudlin and seem offended if strangers did not talk to them. Many mentally ill people used buses naturally; many people with anxiety, depression or worse cannot work. People just out of prison were likely passengers too, some of whom had little money nor options.

Luke encountered a lot of desperate people on the buses he rode. When he had travelled on them long enough be began to lose himself in a Mexican wave of humanity. It was something Luke had never experienced in his mother's car or on a train. A car is isolated and a person can create whatever atmosphere they like. A train may be public but it is also efficient - fast enough to render interactions with other passengers inconsequential. A lot of baggage comes on buses and not only in the the luggage. There were times when Luke would get a great idea while sat on a bus but forget it before he alighted. There were too many distractions. With the people around him coming and going and many making eye contact; the running and yelling children; tail wagging dogs, it was a busy environment. There were big, fat people who were intimidating. If they were sat behind Luke he dreaded upsetting them lest an unforeseen assault should strike him on the head.

People would look at Luke when he did not welcome it and had not the strength to make any response but he did develop a coping strategy. It was not always successful but in any case he would think,  "You make me want to cry. You make me feel hopeless," while he returned the eye contact. If he let all his anguish and pain cover his face and cease caring about maintaining a facade it could surprise people into looking away. It did not always work, though. Some people wanted a reaction, any reaction and would stare as long as they liked.

I wish one day I won't have to use buses any more, though Luke. He had to move to London. He was trying his very best to organise it. He found a website called Homeswapper on which apartment swaps were arranged. The trouble was few people wanted his apartment. If he was in London he could use underground trains to get anywhere. They were a lot more reliable than buses and drivers could not drive past you in the way bus drivers did. The journeys were shorter too.

In his hours spent in Woecaster, Luke would often be bumped into by Mo, a young man about half a decade less in years than himself. Mo, who was short haired and had an athletic but slight frame, spent his days wandering and begging for money. Luke at first gave to him upon every request. He was intimidated and feared he would get beat up if he did not. Mo could be touchy-feely in his approach and did not appear soft. Having been bullied violently in school Luke still believed it could happen again to him. He had himself on occasions got into debt through calling numbers advertised on the television for competitions and had been burdened with excessive phone bills.

It had been a terrible embarrassment to Luke to have found himself in this position and he would be loath to ask for help. The stigma attached to gambling meant he would have to ask for money off his family without telling them why. Gradually he realized the competitions he partook in were pointless - he never won and there was much time and happiness lost from longing to win too, and he came to his senses. As he began to stop relying on borrowing money from his family, he developed more confidence and his bank account grew in health. More was spent on his meals, he became more aware of what was healthy and he  improved his physical condition considerably.

As soon as Luke had gained a better peace of mind it was easier to not walk around so hastily and often and he came to avoid seeing Mo so much. Luke would set out later in the morning than he had used to, knowing Mo's youthful enthusiasm propelled him to begin his activity in dawn; given enough time he would wear himself out. Luke even managed to not give to Mo a lot of times, even when the begging was aggressive. Luke would talk to him sometimes too but not a lot. "Some day you will make something of yourself," Luke had said to Mo one time. "You're a clever guy. You know how to get money off people and so I believe you'll make something of yourself."

Though Mo was a nuisance to Luke, he was not that harmful. When Luke had the courage to speak to Mo, more often than not after imbibing alcohol, he began to break through Mo's hard exterior and see another side to him. He found out he had been put in care and taken from his parents. He now was lobbed back and forth between the two. Despite his drive for money, Mo was quite fatalistic at heart. Luke had asked him, "Are you up to much today?" And Mo had shrugged, sighed slightly and said,

"The usual, you know me." Then after walking a little further turning back to say, "Have a good day, yeah! I mean it."

Luke saw him once coming out of a betting shop. Perhaps that was why he kept begging for money. It was stupid and yet there was an inevitability to it. Luke had read that most people in care received a poor education. They were often excluded from schools and little effort was made to build bridges. If a person's brain was not developed, was it any wonder it developed bad habits? Luke could recall times when he had been less educated and he had done the most ridiculous things. The same was true for others he had known as a child - most had luckily progressed onwards unencumbered by their foolishness; for children in care transgressions were not so easily forgotten.

For a month Luke did not see Mo at all and he began to wonder where he was. Then on an afternoon while waiting at the train station in Duldrum he saw Mo leaning against a post on the other side, dressed in an army uniform. He had his back to Luke and could not see him. With a rucksack on his back and a different expression than Luke was used to, clearly all had changed. Luke never saw Mo on the streets again. He was glad in a sense - but he wished the best for Mo, who he always thought had potential: if only a productive outlet could be found for his dogged nature.

XXXIII

More letters had been sent and received between Luke's mother and the local head of commissioning in the NHS. She was refusing to release information that was to be used in the meeting - information about Luke. Samantha and Luke agreed they should seek legal advice and so wrote e-mails to Liberty and Mind. They both felt Luke's right to information about him was being compromised by the commissioner refusing to tell them what they were going to use in the meeting; furthermore neither Luke nor his mother would have time to think about what they wanted based on that information; it was creating an unfair advantage to the commissioner in the situation.

Meanwhile, the rainy season having started in November continued. Halfway through the month, Luke was strolling near St Ann's Square in Woecaster. He wandered into a charity shop and stared morosely at the hundreds of books, CDs and DVDs for sale. There was too much to absorb and so little time. So many of the items on sale seemed much of a likeness anyway; but in fact almost each was in some special way unique. It made Luke wonder: how can people still demand originality when almost all ground has been covered? He saw a book called How The Banks Got Away With Murder and picked it up. Flicking through, he read extracts about the recent recession and various people's opinions on it. It was all rather long-winded and he replaced the book on its shelf. It set a train of thought in Luke.

There were so many problems being caused by banks and stock markets. Banks had billions of pounds in money from government bailouts. The people had paid for the bailouts through taxes yet the banks did not lend much of that money back. Stock markets, meanwhile, encouraged businesses to make short-sighted decisions motivated by greed in order to provide shareholders with profit. Stock markets did not allow companies to be responsible, for the focus always had to be on expanding aggressively. Which was why so many job cuts were happening and services ran on a shoestring. If it could not be done in this country it was outsourced to a country which allowed slave labour. Even the quality of products was often forsaken, for of course the better designed they were the less likely they would need to be soon replaced - and what would the shareholders make of that?

Luke envisaged a superior system. His system would allow private enterprise but not stock markets. If companies were liable only to customers and not to shareholders then they would start giving customers what they actually desired. The likelihood of such changes taking place were not great; most people did not even understand the economic system they abided by. Luke had observed in his years that most people lived their lives predictably. They married a person of their own class and type. They took few risks.