Saturday, September 12, 2015

"Ghost Boy"

My mom and I recently finished reading a great book called Ghost Boy by Martin Pistorius. This is the true story of Martin, a boy who got a mystery illness when he was 12 years old. He was sent home from school with flu-like symptoms and never returned. His muscles weakened, he lost the ability to do everything and he was in a vegetative state. Doctors weren't sure what to make of Martin's situation (which was later diagnosed as cryptococcal meningitis), and doctors told his parents he would be dead within a few years. Although Martin was in a "locked-in" state, he did not die.

Miraculously, after about four years of being unresponsive, Martin's brain "woke up" and he slowly regained consciousness. Except nobody realized that the lights had come back on in Martin's brain since he had no way of letting people know. Martin was literally trapped inside his body, and he stayed this way for the next eight years (from age 16 to 24). He lived at home where his parents (primarily his father) cared for him, and his parents took him to a care facility during the day while they worked. Martin spent his days watching episodes of Barney at this facility. Imagine watching repeat episodes of Barney day after day. That would be enough to drive anyone mad!
Martin wasn't able to hold his head up, and he did a lot of drooling, hence the bib. He would sit in his wheelchair for hours on end, and was often in excruciating pain from sitting in the same position for too long.
Martin was privy to a lot of interesting conversations during those eight years that he was trapped inside his body, since people assumed he wasn't capable of understanding them. He also had some caregivers that were downright cruel to him. When his parents would travel, they would take Martin to a care facility where he could stay overnight. One of the female employees sexually molested Martin on a regular basis, and would rape him when she had him alone. It doesn't get more despicable than preying on someone who is helpless. Not all of the caretakers were bad, though. Martin wrote about Virna, a caregiver who treated Martin with dignity. She would talk to Martin and would carry on conversations with him, even though he wasn't capable of responding. She would also make eye contact with him while she talked to him, and she saw recognition in Martin's eyes and noticed that he could use his eyes to respond to the things she said. Finally, someone realized that Martin was more than just an empty shell!

Martin was assessed, and the assessment confirmed that he WAS able to understand and follow commands. In the next several years Martin's life changed for the better in some significant ways. He got a computer that enabled him to communicate with others. What a difference it makes when you can actually communicate your thoughts and needs to others! Martin began to regain some of the strength in his weak muscles, too, and he regained some of his upper body functions.
When Martin regained consciousness, he had no recollection of his life before getting sick, and he had so much schooling to make up, too. He ended up graduating from high school and college.
In 2008, Martin met a young woman named Joanna while Skyping with his sister Kim, and the two of them hit it off. Although Martin doesn't have the ability to speak, they began communicating on a regular basis through Skype, texts and email. Martin and Joanna both grew up in South Africa (although they never knew each other), but by this time Joanna was living and working in the UK. Long story short, the two of them fell in love and they got married in 2009 (and Martin moved to the UK). This is where the book ended, and I was so happy for Martin, especially after all he had been through. His book truly had a happy ending, and left me feeling so happy and inspired. Even though Martin went through so much during those years when he was trapped in his body, and even though he still has a very challenging life, he's never been bitter or angry at God. In fact, he said that God was his constant companion amidst all of his pain and suffering, and the one that sustained him through everything.
Martin is able to smile and make a few facial movements, but he still can't speak and relies on assistive technology in order to communicate. He can use his arms and hands to do some things, but he doesn't have full use of his them, and he doesn't have the ability to stand/walk, either. He is a lot better off than he was at his worst, though, and I'm sure he is grateful for every little thing he can do now that once wasn't possible.
Ghost Boy was a great book, and I could relate to Martin's situation in a lot of ways. This book is definitely worth reading, even if you can't relate to being disabled. It will probably make your limitations, frustrations and pains seem light in comparison, and will make you appreciate what you do have!


Julie said...

Thank you for this, I found it really touching.

I saw Martin & Joanna on a morning TV show here in the UK a few months ago called This Morning & was in tears watching & listening to them tell their stories, especially Martin's.

I didn't realise that he'd been sexually abused & raped, what a terrible thing for someone to do to someone in that state - or any state.

I also didn't realise that Martin can't speak. I wondered why he spoke through a laptop.

Thank you again for this post.

Anonymous said...

What an amazing story! Thanks for posting this, I am going to read up on Martin further now!

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