Once in a while I choose some book tiles, not necessarily Christian publications, for personal reading.  It is to understand life in the world in general, and to know what challenges my people and family are facing every day.  Recently I picked up a book titled, “Ghost Boy.”  It is a story about a boy whose name is Martin.  He was a normal boy until the age of twelve.  One day in January 1988, he came home from school complaining of a sore throat.  Since then he was not been able to return to school.  Everyday his pain increased and his body became weakened.  His memory was also weakening.  His limbs became spastic, and hands and feet curled in on themselves like claws.  His parents fed him as his weight got plummeted.  He was completely unresponsive and he was like in a kind of walking coma.  Doctors could not diagnose his illness.  All kinds of medications were tried on him, and he was sent even to a psychiatric ward.  No doctor was able to even suggest a treatment.  He was taken home and his parents cared for him.  He lay like an empty shell and unaware of anything around him.  But then, one day he started coming back to life.  He could see and smell.  Though he could drag his eyeballs upwards, they felt very heavy.  He was paralyzed.  His body moved but it did independently of him.  His limbs became spastic.  He could not control them.  While his body was locked in an endless fight, his mind was slowly getting stronger.  Gradually he became aware of things around him.  It all started when he was about 16 years old, and he had a clear mind by the age of nineteen. 

He was hoping that people could see him fully conscious.  He wanted to leave some signs to them that he was able to think and remember.  No one understood what was happening to him.  Though he regained enough control of his neck to start moving his neck down and to the right, lifting it occasionally or smiling, people did not realize what these movements meant.  He could not make a sound.  He was always silent.  He could not pick up a pen to write a message or to ask for help.  This is what he said later: “I’d been put into a box long before, after all. Each of us has. Are you the ‘difficult’ child or the ‘histrionic’ lover, the ‘argumentative’ sibling or the ‘long-suffering’ spouse? Boxes make us easier to understand but they also imprison us because people don’t see past them. We all have fixed ideas of each other even though the truth can be far removed from what we think we see. That is why no one asked what it might mean when I started to improve enough to answer simple questions like ‘Would you like tea?’ with a turn of my head or a smile’” (Martin Pistorius, Ghost Boy, Kindle Locations 272-276).

His illness led his family nearly to the breaking point.  His mother and siblings wanted to take him to a care home, while his father insisted to look after him at home.  His mother suffered grief-stricken depression and even attempted suicide.  Doctors advised her to stay away from him.  While his family looked after him, his brother and sister could not spend time with their father as much as they wanted.  If I write from the concluding part of the book, it does have a happy ending.  He was able to study in university.  He was even given a job and became a speaker for various worldwide conferences.  He even married later.  However, he still can not use his body fully and has to depend on his wife very much.  He has to use computers to speak. 

He experienced and heard during the years, when people did not know that he was conscious and aware of happenings.  One day, his mother came and her eyes were filled with tears.  She said to him, “You must die.”  Of course, she did not know that he heard and understood it.  There are things people do to the people whom they think are totally disabled.  Listen to what Martin has to say: “The unexpected side to being a ghost boy was that people inadvertently showed me their secret worlds. I heard farts rip like bullets from a gun as people walked across a room or watched them check their reflections so often it seemed as if they were hoping to see a more beautiful version of their face magically appear. I’ve known people to pick their noses and eat what they found . . . . I’ve heard them swear and mumble to themselves as they pace around a room. . . . People revealed themselves in other ways too: in a touch that was gentle and caring or rough and unthinking. . . . if they were angry, they would pull off my clothes just a little more roughly than usual. . . . You only have to look to see the signs, but most people don’t, which is why so many seem to end up feeling lonely. I think that’s why some of them talked to me: speaking to another living creature – however inanimate – was better than no one at all” (Kindle Locations 1137-1149).  “Similar things happened in other places too, where children and adults were too weak, silent or mentally defenceless to tell their secrets. I learned that the people who play out their darkest desires on us, however fleetingly, aren’t always the most easily recognisable.  They aren’t bogey men or women; they are ordinary, forgettable people. Maybe they are even entirely blameless until the chance to use a seemingly empty vessel encourages them to cross a line they might otherwise never have dared breach” (Kindle Locations 1772-1775).  I’ll not write any further because many more of his personal experiences are stories of abuses against him.  Despite all of these dark sides of human beings, there are also good stories.  There are people who became his friends unconditionally.  There was a physiotherapist who was able to notice that Martin actually knew what was happening around him.  There are doctors and carers who did not treat him like an object but as a person.  A kindhearted woman loved and married him too.  I wonder if we can remember the following command from 1 Peter 3:17b day to day: “Honour all men.  Love the brotherhood.”

Lovingly,

Your Pastor

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