Love on the NHS (11 page)

XX

Finely contoured lines were soothing to Luke. Rich colours could show the way to a destination like a spiritual map. He had wanted louver shutters, for so long his desire was to have them! He was always enchanted by exterior windows with shutters on the sides. Writing to his housing association about it was a waste of time. To his dismay they said, "No, we are afraid it is not our policy to allow individual modifications on the outside of properties," and forbade him from installing them. Like one of the impressionist artworks painted in 1800s France, louver shutters were to Luke his humble enlightenment. His inkling for a pretty picture meant - though he could not decorate his home as he pleased -he took up Bart's suggestion to join an art class.

The other students at the classes were older than Luke: about half middle-aged and half older. They talked bawdily making liberal use of double entendres and innuendo, which disturbed Luke. He had a mental image of what a person of a certain should be like. A sheltered upbringing involving little mingling had never challenged his stereotypical views of people. It would be fair to say, though, that Luke had little interest in low humour from anyone of any age. Others may have seen him as stuck up or pretentious but he was what he was - he could not help it if his mind was preoccupied with why's and how's rather than jokes and banter.

He had become accustomed to a select few old people - his own as well as Reese's and Norman's parents, and a few other quaint and middle-class country bumpkins. To meet self-assured, shameless urbanites was a shock to his system. He grit his teeth and found strength for eight of the ten lessons. He produced among others a watercolour portrait of Clare Danes and a hazy, monochrome in red of a long-haired rocker. Technically Luke was the worst artist in the class. He was embarrassed to be there. The others made him feel inadequate as they could all draw or paint a person exactly as they looked. Luke could not and neither was his colour mixing technique consistent. Yet he felt with some pride, while fearing he may be getting a big head, his art had more style than the other students'.

True, the others looked down on his simple representations. Yet their paintings had no impressionistic or romantic aspect. It could be argued the others' paintings were obsolete; the  consumer camera had made their photo-realistic paintings unnecessary. There was no doubt they were all better artists. But what if Luke was a Lucian Freud, a Van Gogh or a Monet? It was having an original voice, or more appropriately vision, that made an artist special.

As he learned to paint Luke was also busy reading Tess of the D'urbervilles. To his surprise he was enjoying it. At first it was nigh impossible to read. The paragraphs were so descriptive and he had to get out his old friend the dictionary a few times. His perseverance was paying off. Never before had he encountered a book that gave so generously of a woman's perspective. The world through Tess's eyes was beautiful.

Luke picked up the phone to the community mental health team a lot. Though he believed no one cared about him, he told them he was depressed. At times he even admitted suicidal feelings. The advice he received was very cold hearted. There were a minority of staff members who were noble exceptions and could calm him down and put things in perspective. Alas, the majority he sought comfort from were undeserving of such responsibility. He waited for some months. Would his desolation pass? His loneliness ease? The help offered him improve with familiarity? Sadly, no. The more staff got to know him, the more disillusioning it was to be treated so badly. Though he explained to each one what Asperger's syndrome was, they ignored him and treated him as typical.

Being labelled mentally ill was a worry. People deemed insane could not sit in juries or join the police force; they could not be in the army or do many other things. This was all part of the law of the land. Mental illness carried with it a lot of stigma and closed a lot of doors. It was wrong that people were so judgmental - where was the outrage? In the news, he read about university students with depression dropping out without support. And friends he had known in school who had helped him little with bullies went onto university. Had the bad people won? What a feeling of powerlessness. But what if he was just scared? Perhaps he could reacquaint himself with old friends. No, no he could not. They would not see him the same way anymore. As for making new ones, how? He was too unhappy, felt too much a lost cause.

In the abyss of his life Luke searched for meaning. What reason did he have to live? How could he deserve to live? If everyone rejected him, then he felt a failure. He was too intelligent to just live. He required justification. He found it in overcoming evil, fighting the good fight. His quest was for harmony and love and he used his knowledge of cooking to aim for that. He adopted a vegetarian diet. Meat was murder - but then milk and eggs were slavery, so he went further and became a vegan. It expensive and time consuming unlike eating meat - but that was sort of the point. Without a struggle, he felt empty. He needed a purpose to fill him. Yet it was never enough. He still needed something else - true romance, between two people; or friendships; or to fulfill an important role. Where was his place? What could he believe in? He did not know. But above all he could not believe that people
paid
to help him could not care less.

He decided to write a formal complaint. The complaint was made against his social worker, Bart Barbuckle, and the people answering his calls. It was a long and drawn out process involving the writing and receiving of dozens of letters. The NHS would never admit blame. It was against their policy. If they ever said sorry to someone it might lead to legal action being taken against them. They would rather frustrate people and make them feel utterly alone, banging their head against a brick wall.

Soon after Luke made the complaint, the service got grew worse still, as they twisted his gripe with their standards into an act of insolence. His despair with life became bleaker and bleaker. One evening he stood staring at his face. He looked into a mirror, wandering what it would be like to be gone. This face in front of me, my face, what if it just wasn't there anymore? he thought. Imagine that. All this pain, gone. I can be free. He called the crisis team that was part of the mental health team. His voice was overcome with hurt but as usual they spoke to him robotically - "You'll be fine, Luke. Just call your social worker in the morning. He will sort something out." They always said; it was never true. He then called the Samaritans. As  is usually the case, just when a person needs help the most their call is answered by someone most inauspicious. It could have been so different. It was nothing more than luck - and today his was bad. He had got someone on the line who wound him up, a horrible, nitpicking fool.

Luke hanged up and picked up his carpet knife. There is nothing left! he screamed inside. Furiously, he lashed at his life. He cut it ten times, spurred on by adrenaline. Blood seeped downwards and covered his sweatshirt in a reservoir of red. Death had never felt so close. It was mesmerizing - but he could not go through with it. He phoned for an ambulance.

Some hours later at the hospital, he suffered a very surly interview with a nurse. Sitting and waiting in the accident and emergency department was hell; people sometimes stared but no one asked how he was. He waited and waited for instructions on where to go next. At last he was passed onto a second nurse and taken to a private room. There he was given thirty seven stitches and washed by a third nurse. And finally a taxi was called to take him home.

He phoned up the mental health team the next day. Though they were terrible, they were all he had. He had to let them know what had happened. Maybe they would finally realise how distressed he was. Certainly no one at the hospital had. A week later he received a letter from the team. It was written to inform him he was being discharged from their care, effective immediately.

Luke found out about an organisation called the Independent Complaints Advocacy Service. It helped write letters and call people up to explain how to complain against the NHS as well as providing support. Since Luke found the complaints process very difficult to understand, he called them up. It was not a good start - the person speaking to him hanged up the phone, just as he was beginning to explain all that had occurred. Again he called up and again was hanged up on. He could not explain why. Was it his confusion and his agitated state? But then surely an organisation like theirs would be built to handle such pressures?

On the third attempt he spoke to someone better and left his details. A week later the phone rang.

"Hello. Is that Mr Jefferson?"

"Yeah. Yes, it is. Who's calling?"

"This is Laura Smith. I'm calling from ICAS, the Independent Complaints Advocacy Service. Jenny took your details a week ago and she's now passed them on to me. I'm going to be your complaints adviser."

"Ah, great!" Luke replied, pleasantly surprised. "So where do we go from here?"

Laura explained all the procedures, the ins and outs of complaining to Luke and over the next few weeks helped him draft and write letters. Since Laura called quite often and Luke was unused to female attention he developed a bit of a crush on her. It is easy to fall in love with someone who shoes a caring side as so often human beings are not privy to show that. Luke was pondering what to do but a crush was just a crush. It would probably pass.

Aside from the complaint, Luke's mind was concerned with the state of his apartment. It needed painting badly. Since he knew nothing about do-it-yourself and was clumsy he looked online for a local decorator. Most did not have a website and there was nothing to give a clue as to what they might be like. Those who did had a website did not present themselves well on the whole. Many clearly had poor customer service skills, not managing to place the customer's needs at the heart of their design. Luke did however eventually find someone promising. He called them up and arranged an appointment. When the decorator arrived he sported a Mohican and was sharply dressed; judging from his body the gym was a second home. Luke asked for an estimate. He queried how much it would cost to paint the entrance hall's four walls, the skirting board and ceiling. The decorator replied it would cost £650. Luke's mouth dropped. "I'm sorry," he said, "but I can't afford that. I'm going to have to call it off."

"That's fine," replied the decorator evenly, and he said goodbye and left.

Then Luke called his father to share the news. When mention of the estimate was made, Luke's father was astonished -

"What?! What on earth are people charging money like that for? They all go off on foreign holidays and drive sports cars these days! There's no way they should be charging that. I didn't charge anything near that price when I was an electrician... even when you take into account inflation from how money was then to now. I'll do it for you. I've been ill a lot - but I'll have to. You can't pay someone if that's how much it costs."

"I know," replied Luke. "It's awful. I feel like I'm never going to get anything done. I can't stand the way this apartment is. I'm lucky to have you. Thanks."

"Yeah, well, a lot of people aren't so fortunate. No, I don't mind doing it for you! I've going to try doing my morning exercises again tomorrow; and try getting back on the bike later in the day if the weather's sunny. I've gotten out of shape but I might recover soon. I'll come down with your mum and have a go at it. We'll see how it goes."

XXI

Winter came and it was soon Bridget's birthday. Luke's parents and Bridget both travelled to stay at his apartment and they all went for a birthday meal. Their venue of choice was a local Chinese buffet restaurant. Grace, Lily and Adriana came to the meal too. Adriana's partner Ken had a younger brother who shared Bridget's birthday so he came along too, along with a large group, ranging from young to old, of Ken's family. Luke became nervous around Ken's family as they were a lot louder than he was used to and quite spontaneous. Luke was mortified to show up with scares on his face. Happily nobody asked about them. Whenever someone did ask Luke, he had come up with a standard excuse - that a cat attacked him in his sleep. It was not very convincing but spared him some teasing.

Luke tired of these annual birthday gatherings. Nothing ever seemed to change. He was always the quiet one. He never lived up to people's expectations. People would ask him questions, awaiting witty responses but he could not give them. They would tolerate him but what good was that? People truly like to be loved and appreciated, not tolerated. Someday, Luke swore to himself, I will find people who like me for who I am.

Two days after the birthday meal Luke woke desperate to release something in himself. He needed someone to talk to - but there was no one there. He walked along the ear-splitting road of traffic to his local store. There he bought a bottle of rum and coconut and on the bus to Woecaster drank its entire contents. When he arrived, he considered going into a bar or two. He would try making conversation but that had gone so bad so many times before. You were local or you were not in these parts. If you were not, you were a target. Weary and tired, he leaped up onto a bridge. It overlooked the river Doe and was a focal crossing point for cars and pedestrians between Duldock and Woecaster. Some passersby shouted, "Don't jump," but Luke ignored them. He was just taking in the view.

A few minutes later a police officer was stood behind him. Luke noticed when he happened to turn his head.

"Are you alright there?" the officer asked. "What's your name?"

"Yeah. I'm fine. I'm Luke, what are you doing here?"

"I'm a specially trained officer to deal with situations like this. Me and my colleagues have been called out because people don't want you to jump off this bridge."

"I wasn't going to. I was just standing here."