Love on the NHS (17 page)

There were very few jobs for young people nowadays - and middle aged people on dating websites - and the few lucky young ones - carried on boasting about all their successes and refusing to mingle with anyone who had fallen through the cracks of this crumbling nation. It had managed to host the Olympics and promised to engage more citizens with sport in the aftermath - all hype, of course, as the facilities suited only elite athletes, of whom the general populace would never be able to be a part of. In any case, there was no fun to the kind of sport worshipped nowadays - Luke wondered if people only showed such an interest in it because they had given up. It was the outlet for the ousted, cheering on beings who were far more capable than you yourself could ever dream of being in events that had no bearing on your life - or indeed anyone's in a meaningful sense. Even all the fun had gone out of everything. Athletes did not drink beer anymore nor stop for a chat: every precious second and calorie counted.

Any city that did host the Olympics would experience a housing boom that would make hundreds or thousands of local people priced out of their homes and forced to move. There was the ironic thing - this Olympics that was supposed to be for everyone brought about new housing construction; but these new homes were too expensive for ordinary people. In actual fact, then, the Olympics was worsening the lives of ordinary Britons, disintegrating further an already threadbare social housing stock. Scores of beggars would come to wherever the international circus was put on too. Wherever fame and celebrity went, the desperate followed. If there was not an international tourist draw, there was always some celebrities to distract people's attention from caring about the tragic circumstances of so many people's lives.

Meanwhile anyone on benefits was demonised while any innocent pleasure that had ever been enjoyed in life no longer existed. If something was unrelated to money or status, nobody cared. In this void, Luke struggled to survive. His future weighed heavily. As dog ate dog, he must prepare. He needed a future. Whether or not he could work, who knew - but the media targeted benefit claimants every day. The government kept saying, more would be taken off. So when Luke saw a media college advertising an opening day he attended. They attempted to sell the courses on offer to the half dozen potential students who came. Fees were in excess of £3000 and must be paid through a loan; this made Luke terrified. But worse, the tutor said group work was key. "Your time here is what you make of it. It's a lot of money to invest but we have the contacts. We have had students who now work on major films. But we can not do the work for you. What you get out of it depends on how you interact. You'll get every opportunity to meet other people and work on projects. Seize every chance and get all the experience you can."

It was great for those who could - but Luke was a fish out of water. When the tutor asked, "So now I've summed up; does anyone want to be upfront and say, 'This isn't for me. I want to leave,'?" Luke came forward and left. What would he do? Even being in the room with the people had been unbearable. Eyes wandering, what to say? Who to trust, too many people; too many choices; where, when, how?

XXVIII

It was a Tuesday. How could he make it end? He called Jolly.

"Hi, it's Luke."

A pleasant voice: "Oh. Hi Luke."

"I was wondering how the complaint was going." He spoke chirpily. All an act of course. He was miserable; but Jolly deserved optimism. To admit how cynical he felt - no, he couldn't.

"I'm still waiting for a response. I've sent the trust a letter. We need to give them another two weeks and by then we should get a response."

Luke was speechless. He had not talked to anyone: not more than a few words, for so long. Only his mother and sisters. What could he say? About the complaint, his turmoil, why it mattered. It was hopeless. He needed answers. Answers he was certain would make him miserable! Disappointed too, probably. He must keep talking. He needed listening to. Help was too hard to find, especially when he looked. It was not found from the Samaritans or the doctor.

"I find it so hard being around people. People stare at me. I can't cope with it! No one understands. It's really difficult for me. I went to a college open day and I couldn't cope. I don't know what to do."

"I'm sorry," Jolly said. "I'm afraid we can't help you with that - but I am doing everything I can with your complaint, and trust me, I'm going to make sure it gets dealt with."

"Thanks. There's another thing I want to ask you. I've got a crush, on Laura at ICAS." And he blurted, "Why are women so always awkward?" - He staggered. The words... had left. Too late. He had meant to say: "always so". A mild dyslexia had afflicted him. Nervousness; damn it. It was always when nervous.

"Ha ha ha. That's not what you said to her is it?"

Luke wished a hole would swallow him. "Oh! I'm sorry. I didn't mean to say that! I say stupid things. Without thinking. I'm such an idiot."

"No, no, that's fine. We all say these things sometimes."

His face reddened, "I'd best get going. Have a good day."

She laughed. "Good bye."

Luke loved her laugh. Was it genuine or out of pity? He pondered it.

Even if inspired by pity, it was the sweetest laugh and he treasured it. Luke felt his heart racing. A flutter and his troubles vanished.  An epiphany dawned. You know what? he mulled. It's time to lose some weight. He decided he would try healthier foods. And he bounded down the street.

Luke was still depressed. His mother often called him and he her. She was well aware of his misery. In her ways, she tried to help. "Will you call up Jolly for me?" Luke asked her. "I want her to understand more about how Asperger's affects me. She might get a better understanding if you tell her." Luke's mother assured Luke she would. She called the National Autistic Society too , a charity that educated people about Autism and Asperger's syndrome and provided services. She explained how dire her son's situation was and they agreed to meet. It was determined they'd provide a support worker. His name was Gary. He would meet Luke on a few occasions in various areas of Woecaster. They would typically meet once a week. On clear day, they walked along the river Bursey, chatting.

"Are you interested in art?" Gary said.

"I don't know really. I don't know much about it," Luke admitted.

"Oh! Heh, heh. Well, I was going to say: this would be a great area to paint a landscape painting. Have you ever thought of trying art?"

"Not really," Luke replied, bored. He sensed a lecture approaching.

"It's occupies your time. It's a very good hobby. I've been painting for years. I've got loads of paintings at home. I don't do it for anyone - just myself really."

Luke sighed. Why go to all that effort for no recognition? Life was too short to pursue dead ends.

But a kernel of an idea had been planted. A few weeks later Luke joined a ten week art class. Taught at Duldrum college, he sometimes enjoyed it; never the company, but certainly the painting. People's egos outgrew the small room. He did not attend the last three sessions. Then Gary met Luke again for a meal at a fish and chip restaurant. He introduced Luke to a backup worker. Luke had become dissatisfied with his support at this point. What he wanted to talk about with Gary, he could not. And he now even felt only a number. Backup arranged - without his consent, with people he had not approved and did not like. Personality. That was key. He deserved people he liked.

He wanted to watch Lawson's Creek with Gary. To experience a feeling of transcendence from the dull and mundane with another. But Gary was not the sort. It was too much for him to travel to Luke's. He did not believe DVDs constituted support. And he followed all the pat rules. If a person was angry they had challenging behaviour; cooking chips and cheese? Developing independent living skills. There lied the problem for Luke. Support had attached to it
personal development
. Disabled people want normal lives, just like everyone. They do not live to be trained and educated - every single day! Luke could not believe what people expected of him. He must help them tick a box, fill a form but never mind him.

The reason he needed support was his social life. It was so poor. He could not make friends. The support should have created a social life; since Gary did not aid Luke, he fired him. Again, Luke's mother phoned the National Autistic Society. Again she arranged a support worker for him. Benny was better, a certain improvement on Gary. Based on feedback from Gary, the society arranged home visits. Benny would drive to Luke's and they would watch Lawson's Creek. Starting from the first episode, they viewed two a time. Luke was pleased. Initially, anyway. It proved to be inadequate at length. Benny missed the point. He found the show amusing. Fair enough! They had a laugh; yet Benny overlooked its beauty. It was entertainment to him. He had no grasp how cathartic feelings it gave Luke - or the happiness and possibilities it made him feel.

It was an escape. Luke could escape with Lawson's Creek. Benny didn't get it. "How are you today," asked Benny on a visit."

"I'm not very happy," replied Luke. He would usually assume a front. But sincerity was a principle; one he believed in. He could not deny himself anymore.

"Oh dear. Look, should I-? Is it because I've come? Is this not working for you?"        Luke had seldom been direct. Very seldom in his life. He had often asked his mother to cancel appointments or break bad news. He did not find it came naturally. He was blunt and inexperienced at being gentle - but he would never flower without opening. He must, he must!

 "I don't feel comfortable. I'm sorry. I don't feel people understand me."

Benny nodded. "I'd best get going then. If this isn't making you happy I shouldn't stay."

That was the last of Luke's support workers.

Any hopes Luke had had of support were crashed to earth. Even his mother was disenchanted. Luke would wonder sometimes: wouldn't it be better if support workers helped people with clothes? Or to choose a stylish haircut? That kind of help could make a big difference. Support did not have to be jumping people through hoops. So many people are unpresentable. Luke knew wearing different clothes profoundly effected how people treated him; and when he got his hairstyle right, he could curry favour. The problem was he could it wrong and not realise. He had too often spent money on bad clothes. For young men it was confusing. Formal shirts and jackets always improved all men's appearances. This is especially true for overweight men or those those with short arms or a lanky body; but if you were younger than thirty, it was seen inappropriate for casual wear. There were too many rules to follow.

 It was hard for anyone, harder for someone Autistic. Luke could have benefit from personal hygiene guidance too. For years he would shave with a blunted razor, not knowing it was cutting him. He could never get a smooth shave. People saw him as less for that and he never even knew. Like Sherlock Holmes, due to his prodigious intelligence, his family and professionals overlooked he could be stupid. Such are the problems of a generic support system that tends to provide care in a one size fits all approach. Though the term person-centred care is bandied about, it is not really followed. Not usually. And so Luke squandered potential for many years, aided and abetted by those who "knew better".

XXIX

In the beginning of November, drizzle spat from the slate sky. Luke shivered as he waited at a bus shelter. Buses running near his apartment did not come often. His legs felt like rubber and were bending under the pressure of standing; they would not last much longer. Car after car drove past Luke emitting dull monotonous groans. The light of the dim sun reflected from their windscreens and made their drivers and passengers invisible. As  they passed the rumblings of their engines grotesquely reverberated. How much longer could the bus be? People were staring as they passed. A man frowned, was he annoyed? Luke sighed bitterly. He wished he could see the ocean or a sandy beach. He did not mind standing in one place but not in an ugly strip of tract housing in heavy traffic like this. Not every bloody day.

He reached into his pocket and flicked through the contact list on his phone. The most likely ear to be sympathetic was his mother.

"Hi best son!" she greeted him.

"Hi mum," he moaned. "How are you?'

"I'm gr-r-r-eat! How are you?"

"I'm stuck at a bus stop," he said, once more sighing. "Have you heard if the complaint's going to take much longer?"

"No. No, I haven't. Sorry, love."

"Oh. Did you call Jolly up like I asked? And explain how I find it hard communicating because of my Asperger's?"

"Yeah. I did. She was really nice and understanding."

"Oh. Good. Have you heard off any of my sisters?"

"No, not really."

"They really annoy me. None of them care about me. They never try to help."

"They do their best. How could they help you?"

"By getting me friends or taking me out."

"Lily and James take you out sometimes. They all do their best, they all really care about you."

"Well, it's not good enough! Not that it matters. I only know them because I share genes with them. They wouldn't associate with me otherwise. We've got nothing in common."

"Everybody's different."

"Yeah. Well, they don't feel lonely like I do," replied Luke, heart heavy, hanging up.

He switched off his phone and replaced it in his pocket. For three days he did not turn it back on. There was nothing to talk about. Not anymore. He was a nobody. Nobody understood. Nobody cared. The only person who gave him hope was Jolly. He could not call her too much, there was only so much to talk about. Complaints are not the easiest of subjects to wax lyrical on.

If he called more, would it be be unprofessional? He might be moved to someone else. The situation was intractable. Whatever system people create, it fails. No matter how good for us it is designed to be, sooner or later the system strives more to maintain its own importance or survival than its original purpose. No system can make men and women great and no great person can be held back or put in a box by a system. Luke was beginning to feel like Romeo, the star-cross'd lover. Romeo Montague had fallen in love with Juliet Capulet from a forbidden family. His family and Juliet's were not supposed to fraternize Luke had fell in love with a forbidden professional. Professionals and their clients, beyond the realm of their casework, were supposed to not coexist. It amounted to this: an arbitrary rule stated A shall love B but not C. He was A and loved C.