Lord Soul

By S. M. Kois

Charlie Walker is an exceptionally intelligent yet lonely boy, whose life is profoundly altered when his parents bring home Timmy, his new baby brother. Timmy suffers from EB, an incurable illness that causes him to receive horrible wounds from the lightest touch. Charlie is devastated at the thought of the grim prospects little Timmy faces in the future. One evening, he meets a stranger who claims he can help Charlie find a cure for his brother's illness. Despite believing the man is nothing more than a hallucination caused by the onset of schizophrenia – an illness that runs in his family – Charlie welcomes the company and comfort he provides. 

The man starts teaching Charlie about biosciences in order to find the cure for EB and save Timmy's life. When unexplained events start to occur, Charlie questions whether his secret tutor is a hallucination after all. As time passes, what were initially exciting lessons begin to draw him deeper into the mysterious world of Near-Death Experiences, Souls and the Afterlife, until he is forced to make a decision that will alter the course of his life forever…

'Lord Soul' explores intriguing questions that have fascinated humans throughout history, such as what is consciousness, what happens to the mind when the body dies and what is the true purpose of life.

• Language: English
• Publisher: S. M. Kois
• Release date: Dec 27, 2018
• ISBN: 9781386714170

S. M. Kois

S. M. Kois is a neurobiologist who has a passion for good books, science and creativity. She currently lives in Scandinavia, Europe with her two dogs. For more information and to contact S. M. Kois, visit smkois.org.

Book preview

In this world of uncertainties

we have the luxury of choosing our beliefs

Part 1

——

The day seven-year-old Charlie Walker’s parents brought his new baby brother home was sunny and exceptionally warm. When his father’s car turned into the driveway, Charlie was already standing by the door, anxiously waiting to meet the new arrival.

Where’s the baby? Let me see him!

He jumped around his parents as they entered, excited to see his first sibling. His mother lowered the carrier and lifted the blanket, and Charlie saw the smallest, cutest creature he had ever laid eyes on.

Hi, Timmy.

He extended his arm to touch the baby’s pink cheek, but Sue Walker grabbed his hand gently.

Charlie, your brother is very fragile. You have to be careful around him.

I wouldn’t have hurt him, Charlie said, his hurt feelings visible on his young face.

His parents looked at each other, and then his mother took the baby into the other room, but not before Charlie saw a tear flicker in her eye. His heart leapt in fright; something was wrong.

Son... John Walker put his hands on Charlie’s shoulders and looked deep into his eyes, the way he always did when he was going to say something important. You are not allowed to touch your brother if you are alone in the room with him. You must not stroke him, caress him or have any kind of physical contact with him. Can you promise me?

I promise, Charlie whispered.

His father looked at him a while longer, making sure he had understood what he had been told. Then he sighed, and a softer look appeared in his eyes.

I know you are wondering why I am asking you not to touch Timmy. Your brother is very fragile, more so than other babies. He is not like you were as a child; if you touch him you could cause him serious damage and a lot of pain, even if you don’t intend to. You would not wish that to happen, would you?

No. Charlie looked down. But I don’t understand; why would it cause him pain if I touch him?

His father was quiet for a while, as if searching for the right words.

You are a very smart boy, Charlie, smarter than most. We have talked about this, do you remember?

For as long as he could remember Charlie had felt different amongst other children his age. He loved to read and had acquired an extensive amount of knowledge through books, and what he did not know he could in most cases reason with logic. Although he was not bullied particularly badly at school, he spent most of his time alone between classes, often reading a book or just walking around, distracted by his thoughts.

Charlie is exceptionally smart, there is no question about it, he heard his father say to his mother one evening when they thought he was asleep. He had been in his usual hideout at the top of the stairs, where he often sat listening to his parents’ discussions; he enjoyed hearing them talk to each other as adults, instead of unconsciously filtering their sentences to the level of a child of his age.

If we let him take the IQ test, his scores will undoubtedly be high, but such a result would distinguish him from his classmates even more. You know that I have never believed in categorising people; I would rather have our son grow up as a normal kid, instead of some sort of prodigy who is always being put on a pedestal.

I understand, Sue said. I just thought it might be good for us to know how intelligent he really is; it might help us provide him with the challenges he needs so that he doesn’t get frustrated.

We can do that without knowing his exact IQ, John said. We already know he is smart, and we will treat him accordingly. He gently brushed aside a loose curl from his wife’s forehead. I think many parents who let their kids take IQ tests are motivated by personal satisfaction rather than thinking about whether it is in their child’s best interests. 

Maybe so, dear, Sue said.

Then she leaned closer to her husband on the couch, and when it was apparent that the conversation was over and only boring adult interaction would follow, Charlie had sneaked quietly back to his room.

Now, standing next to his father, he sensed that his parents were not as happy as they should be in the event of a new baby arriving home. His father kneeled down until his face was at the same level as Charlie’s.

Your brother has a very rare genetic disorder, something called Junctional Epidermolysis Bullosa. Do you remember when we have talked about how some people have genes that do not work properly, causing them all kinds of problems?

Yes, I remember.

Charlie’s father was a neuroscientist working in one of the most respected universities in the world, and ever since his son had started to speak, John had never refused to answer his questions, even the complex ones, although he often filtered his answers so that they could be more easily understood by his knowledge-hungry son.

One of Charlie’s favourite activities was to go to his parents’ library, pick a physiology book, and then cuddle up next to his father on the couch and ask him about the images and titles in the book. He was endlessly curious about the way the human body functioned. It was fascinating to think that all his feelings, both good and bad, were essentially created by a mass of nerve cells stuffed into his skull, and the most fascinating thing of all was that this complexity was carefully built during development, starting from a tiny collection of cells in his mother’s tummy, by the instructions of incredibly ingenious data-storage units that scientists had decided to call genes.

Good, his father said. Your brother has a problem with the gene that is needed for the production of a very important substance in the body.

What substance?

Do you remember the picture of the skin in your biology cartoon book? The one that showed the different layers of the skin – the surface layer and the layer beneath it?

Yes.

There is a certain group of molecules that serve as small ‘anchors’ that keep those two layers attached together. If those anchors did not exist, the layers would move independently of each other, which would result in serious damage to the skin.

What kind of damage?

Blisters, wounds, infection, nasty things like that.

Well, it’s good that we have those anchors then, right?

Yes, most people do have them. But every once in a while, although very rarely, a baby is born who does not have them.

Is Timmy one of those babies? Charlie asked in a small voice, not really wanting to hear the answer.

Yes, Timmy is one of those babies, his father said, stroking his hair gently.

Can it be fixed?

No, unfortunately it cannot be fixed; there is no cure for this disorder. I hope there will be one day, but right now there is not, so we need to take very good care of Timmy, all three of us. It is very important that we protect him from any unnecessary contact with his skin. I need you to be a big boy and look after your brother.

Charlie looked up, deep determination on his young face.

I will protect Timmy.

His father smiled. Good boy, I knew I could count on you.

——

The day Timmy turned three months old was the day that would change Charlie’s life forever. His father was at the laboratory and his mother was working in the garden; Timmy was sleeping in his crib in the living room next to the couch. Charlie was sitting on the couch reading one of his favourite books when his mother came in.

Charlie, could you watch the baby for just a couple of minutes? she asked. I need to get some plants from Carol. It’ll only take a moment.

Carol was their neighbour, a friendly middle-aged lady who shared Charlie’s mother’s enthusiasm for gardening.

Yes, mother, he said, eager to show he was up to the important task.

It means you are not to leave this room until I get back. No wandering upstairs or outside. Understood?

Understood, Charlie said obediently.

That’s my big boy. Sue smiled and turned to leave.

Charlie put away his book and turned to look at the baby. He was awake now and looked up at him with his big brown eyes. Tiny red marks covered the child’s cheeks in the areas where he had been rubbing himself.

Hi there, Timmy. He smiled at the baby. When you grow up you need to learn not to rub yourself so much, so that you don’t get wounds.

The baby looked at him and blinked his eyes; then, as if he had understood what his big brother said and decided this was the perfect moment to demonstrate he had a will of his own, he lifted his hand to his cheek and started rubbing it. Charlie grabbed the tiny arm to halt him.

You should not do that, brother, he said gently.

But Timmy appeared to have decided that rubbing was going to be his primary activity during the absence of his mother, and he uttered a loud cry, trying to free his arm from his big brother’s grip. Charlie held on tight, trying to calm the baby down while simultaneously trying to remember how his mother dealt with such situations. Somehow she was able to distract Timmy from the urge to rub his skin and direct his attention elsewhere. Usually she offered him milk, which in most cases was enough to get the baby’s undivided attention. But Charlie had no milk.

What else would his mother use to distract Timmy if it was not his feeding time? Toys. He looked around, but to his frustration he couldn’t see any; all Timmy’s toys were in his room upstairs, thanks to his mother’s cleaning frenzy earlier that morning.

Timmy’s face was starting to turn red. He was crying hard now, long angry howls that Charlie suspected carried all the way to Carol’s house, hopefully alerting his mother. But minutes passed and his mother did not show up. He started to feel desperate. If he let go of the baby’s arm, Timmy would rub himself and get fresh wounds, and his mother would blame him for not being able to look after the baby properly.

What would his mother do in this kind of situation?

If nothing else helped, she would pick the baby up and hold him gently on her lap in the rocking chair. But Charlie had been told never to pick up the baby.

A cold sweat had covered his forehead. If he did nothing, the baby would get horrible sores from struggling in his crib. But if he lifted the baby up very carefully and if Timmy calmed down before his mother returned, he could put him back in his crib and she would never know this episode had taken place.

But his parents had specifically told him not to pick up the baby.

He looked desperately at the door, hoping that his mother would return and he would not have to make such a choice. Timmy would probably get some sores from his struggle so far, but that would be all, and nothing serious would have happened. But the door remained closed.

Timmy’s cries were now piercing; tears were pouring from his eyes onto his red cheeks. Charlie’s heart was pounding like a gong in his chest as he made the decision.

He lifted the baby carefully into his arms. Timmy halted his cries for a few seconds, perhaps surprised to be lifted up by a new person, and then continued with even greater strength. He was squirming in Charlie’s arms, and he nearly dropped him.

He held his brother tight against his chest and sat on the couch, hoping to calm the baby down. But Timmy would not calm down; he was struggling harder and Charlie could feel his limbs – which were covered with white bandages to protect the skin – brushing against him, undoubtedly creating mechanical irritation which would result in painful blisters later. He started to realise that it had been a horrible mistake to lift the baby up, but he could not take him back to his crib now, fearing that he might drop the struggling child if he tried to get up. So he just sat there, holding his brother, tears slowly starting to pour from his eyes as he realised how angry his mother would be when she returned.

After about five minutes, his mother came back. She heard Timmy’s cries from the porch and ran to the living room, freezing at the door when she saw Charlie holding the red screaming baby in his arms. She rushed to him and grabbed Timmy.

Go to your room! Now!

Charlie’s heart sank; he had never seen his mother so upset. He ran upstairs to his room, closed the door and threw himself onto his bed. He pressed the pillow over his ears, but could still hear Timmy’s screams that did not stop for the next half an hour. After that it was dead quiet, until several hours later when he heard the front door open as his father came home from work. It was silent again for about ten more minutes, and then he heard a gentle knock on his door.

Charlie?

He heard his father’s voice. He did not respond, and just lay on his bed, the pillow over his head. The door opened and his father came to sit on the side of the bed.

Why did you do it? Why did you pick up the baby?

He was crying so badly ... and rubbing his face. I tried to keep him still, but he was struggling so hard. I thought it would be better for him if I lifted him up. I thought he would calm down, but he didn’t. His voice broke. I’m so sorry, I didn’t mean to disobey you! I didn’t know what to do. I’m so sorry!

His father pulled him close and hugged him.

I know, son. It’s alright, I know you meant no harm.

Is mother very angry with me?

She is worried about Timmy, that is her top priority now. We do not know yet how badly this has affected him. He paused for a moment. Your mother knows you meant no harm, but it is best if you give her some time alone with the baby. Do you think you can do that?

Yes.

Good boy, his father said, and stroked his hair.

Then he stood up and went back downstairs. Charlie felt slightly better, but worry still weighed heavily in his chest and he was unable to fall asleep for several hours. When he finally did, his dreams were troubled and dark.

——

The next morning, Charlie passed Timmy’s room on his way downstairs for breakfast. The door was ajar and he could see his mother bent over Timmy’s changing table. He heard his brother cry, and his mother’s soothing voice trying to calm him down. Then she moved slightly to the side and he got a glimpse of his brother lying on the table.

He gasped.

Timmy was naked and covered in raw red patches, as if someone had peeled parts of the skin away. He was crying miserably. Sue turned around and saw Charlie standing by the door. Her mouth was a tight line, and the dark circles around her eyes indicated a sleepless night as she closed the door without saying a word.

Feeling numb, Charlie walked downstairs to the kitchen where his father was preparing breakfast.

How are you feeling, son?

Did I ... did I do that to Timmy?

His father put his hands on Charlie’s shoulders and squeezed gently.

Your brother will be fine.

She hates me, Charlie whispered. Mother hates me for what I did. The way she looked at me ... and Timmy ... I did that to him. He pressed his hands to his face as the tears started to pour down his cheeks.

His father kneeled down and hugged him, and Charlie buried his face against his chest.

Your mother does not hate you. She is very upset about what happened for many reasons, mostly because Timmy is hurting so much and because it could have been avoided if you had only done what we asked of you. You should not have touched the baby.

I only wanted to help him ... he was crying so badly. I did not know that I would hurt him ... like this.

I know that, and your mother knows that too, she just needs time to calm down. She loves you just as much as she loves Timmy. His father looked at him, a serious expression on his face. You must promise never to do this again; you must never touch the baby without supervision, no matter how much you feel you need to, unless there is a clear risk of danger to him and you must pick him up to protect him. You do not want to hurt your brother again, do you?

No, Charlie whispered. I promise, I will never touch the baby again.

——

That evening Charlie was sitting in the kitchen, using his father’s spare laptop as he often did when he wanted to search for more information on some interesting topic, usually about something he had discussed with his father. He went to Google and typed Junctional Epidermolysis Bullosa, pressed enter and started reading the article that was at the top of the first search result page.

The more he read, the colder he felt inside.

Patients with mild or moderate forms of Epidermolysis Bullosa, also referred to as ‘EB’, experienced extensive difficulties, but were still able to live a relatively normal independent life. But that was not the case with patients who suffered a severe form of the disorder, and he knew from his parents’ discussions, which he had overheard while sitting in the shadows at the top of the staircase, that Timmy’s EB was a severe case.

Fingers shaking, he again typed Junctional Epidermolysis Bullosa into the search field and clicked on ‘images’. Pictures of children covered with large red patches of raw skin filled the screen. For most of the patients the surface of the skin had peeled off from vast areas of the body and only tiny spots of clear skin were visible in between. Many of the red patches were covered with a greenish substance, a clear sign of infection.

Pain stung through Charlie’s chest as he thought how painful it must be to live constantly with a condition like that; he had burned his finger on the stove a couple of weeks earlier and remembered vividly how horrible it was to touch the raw red area, let alone to wash his hands ... and Timmy had to be washed every other day to clean his wounds. How painful it must be for the baby. He knew his parents gave Timmy something to calm him down when it was time to take a bath, but still, he did not understand how his small brother could take it.

Then he noticed something else. Almost all of the images were of very young children, only a couple of them young adults, and there were no images of older people. His hand was shaking more violently as he closed the ‘images’ tab and went back to article search mode. He clicked on the title ‘Severe Cases of Junctional Epidermolysis Bullosa – Prognosis’ and scrolled down the screen. The sentences ran in front of his eyes until he felt he was going to vomit.

Fingers and toes glued together.

Blindness as the inner parts of the eyelids become attached to the surface of the eyeballs.

Early death.

Charlie whimpered and slammed the lid shut. He got up and walked quietly past the living room, where his parents were talking and watching television while his mother fed Timmy. He went into the hallway, put on his shoes and stepped outside into the darkening night.

Once outside, he started running, slowly at first, then faster and faster until he was storming through the small forest right behind his parents’ house. The bushes tore at his clothes and skin, but he hardly noticed as he made his way towards the nearby seashore. The trees around him appeared to bend downwards, looming over him like evil spirits, reaching out to grab him with their skeleton hands. The branches hit his face and hands, but he did not feel anything, the pain inside him overriding all external sensation.

——

By the time he reached the sea it was already dark. As he stepped out from the forest, the moon appeared and illuminated the deserted cliff and crystal water below. He ran to the edge of the cliff and halted, taking a step back as the small rocks beneath his feet started to fall down to the shadows, where he could hear the roaming waves hitting the rocks.

He looked up at the moon, tears blurring his vision, making the silver disc resemble the distorted face of a monster.

Why? he shouted. Why did you make Timmy that way? You should have given him his anchors like everyone else!

He realised how childish he sounded, but didn’t care. Frustration dwelled in his gut, overriding his usual logic and unleashing the scared child beneath.

The moon looked down on him silently.

I hate you! he shouted through his tears. "I ... I curse you!"

He fell to the ground, his whole body shaking, crying out in pain and frustration as he thought how insignificant his defiant words were to the Heavenly Lord, should He even exist. His mother was certain He did, but Charlie had his doubts, mostly because his logic refused to allow him to believe in something for which he had no empirical data.

As he grew older he had started to question several ‘facts’ that his mother seemed to take for granted, not least the existence of some other-worldly invisible power that controlled matters on Earth. Although he had never discussed the matter with his father in detail, Charlie suspected that John Walker did not share his wife’s unconditional faith, yet he had never sensed any sort of conflict between his parents due to their different views of religion; on the contrary, he sensed tenderness, respect and deep caring between them, and had never questioned their views, as from a very young age they had taught him to respect people whose opinions differed from his own.

So when his mother told him that God would take care of Timmy and it was not a coincidence that his brother suffered from EB, but that God had a plan for him, Charlie had nodded politely, though deep in his mind he did not share her optimism. But now, on this deserted cliff, with the cool, uncaring moon looming over him, the existence of all sorts of supernatural powers suddenly seemed more believable, and so perhaps God too existed. And if He did, Charlie would keep on cursing him every day until He healed Timmy.

He closed his eyes as a painful mixture of anger, frustration and desperation filled his heart; how he wanted to be stronger than this, stronger than a weak-minded child who could not resist the cry of his brother for five minutes, and instead had picked him up, causing him weeks of suffering. Strong enough to make even God tremble as he put a curse on Him. How he wanted...

To save your brother?

Charlie felt his heart jump into his throat as the voice penetrated the thick layer of darkness in his mind. He opened his eyes and turned around, but saw nothing; he was alone on the cliff. And yet he had heard the words as clearly as if the person who spoke them was standing right next to him.

A thick cloud appeared as if from nowhere, hiding the moon and making the cliff suddenly appear threatening, like a place from another world. At that same moment the sky appeared to be torn apart by the biggest bolt of lightning he had ever witnessed, and the sound of the thunder momentarily blocked his ears. The sound should come later, he thought, always later than the light. The sound should come later because the sound waves travel slower than the light waves; that was what his father had told him. And the shorter the time between the light and the sound, the closer the storm was.

Did that mean he was standing at the very centre of the storm?

He felt his heart freeze, knowing how dangerous it was to be in an open, high location during a thunderstorm.

Or to make God tremble at the sight of you?

Now the voice was no longer inside his head, but coming from behind him. He turned around and saw a man leaning against a huge rock that was about to fall over the cliff. His face was hidden in shadow, framed by pitch-black hair that rested softly on his shoulders as he stood there, relaxed, like a strange creature of the night that had magically materialised from thin air. He wore dark garments that vaguely resembled a regular jacket and trousers, yet were unlike any piece of clothing Charlie had seen before. He was certain the man had not been there a moment earlier when he arrived on the cliff.

Who are you? he asked suspiciously.

At that moment the clouds moved away and cool moonlight lit up the man’s pale face. His skin was white as porcelain, his eyes black as the murky waters in the darkness below, currently softened by a spark of amusement as he observed Charlie quietly.

So, my young friend, he said, ignoring the question, which is more important to you: to help your brother, or to make God tremble?

I want to help my brother, Charlie said without hesitation.

He looked at the stranger warily, trying to remember if he had seen him before; something about him felt vaguely familiar, but he could not locate the memory.

So I thought, the man said, a smile in his voice.

But I don’t know how. Charlie tried to dig deep into his memories to remember where he had seen the man, while simultaneously trying not to show his nervousness. Suddenly he felt insecure being out at night on this remote cliff, where hardly anyone ever came, alone with a stranger who could do with him whatever he wanted.

Timmy has a genetic disorder, he continued in a slightly nervous tone. And there is no cure for it.

Correct, the man said. No cure ... yet. If you wish it, that will soon change. But only if you truly want it.

His voice was warmer now and his eyes no longer looked like those of a corpse that the ignorant sea had thrown onto the beach after stealing its life.

Charlie looked at the man curiously. The logical part of his mind was starting to take over and he