The most amazing story


When I was 18 I worked at a special school where almost all the children had cerebral palsy. Most had severe physical and intellectual disability, unable to walk, talk, feed themselves or use the toilet.  To communication, some used basic sign language (which I learnt) or a method called Bliss-symbolics based on pictures. 

I was often asked  . . . "how do you cope" . . .  "don't you find it depressing".

Whilst it was a very physical job with lots of lifting, emotionally I didn't find it difficult at all. In fact I loved the job and never once looked at the children and young adults as "retarded", "disabled" or "hopeless" -  I saw their smiles, their interactions and found it one of the most rewarding jobs I have ever had. 

Occasionally we would take the young adults into the city, the female staff would take the girls to look at clothes and do girly things, whilst the male staff did "men's things" and we all met up to enjoy coffee and cake together. We would chat away to our charges as if they were normal teenagers. However many people we came across didn't, they raise their voices, they talk to them as if they are babies, they would offer them money, or they look away nervously and afraid. Some would even tell their children to look away.  

Where I current work, we have a  man with an intellectual disability, I always stop to have a chat and on Mondays I ask him about the sport he has watched over the weekend, the walk he usually takes after church and find out what else he has been up to.  I try and make my conversations personal to him and varied. He loves that I stop and chat and I pretty sure makes him feel welcome and part of the office. Other people walk past him and don't bother. Can you imagine being treat as lesser?


I have just finished reading a book called "Ghost Boy"by Martin Pistorius. It was a brilliant read and showed the the power of the human spirit to never give up. 

"In January 1988 Martin Pistorius, aged twelve, fell inexplicably sick. First he lost his voice and stopped eating. Then he slept constantly and shunned human contact. Doctors were mystified. Within eighteen months he was mute and wheelchair-bound. Martin's parents were told an unknown degenerative disease left him with the mind of a baby and less than two years to live.

Martin was moved to care centers for severely disabled children. The stress and heartache shook his parents’ marriage and their family to the core. Their boy was gone. Or so they thought.

Ghost Boy is the heart-wrenching story of one boy’s return to life through the power of love and faith. In these pages, readers see a parent’s resilience, the consequences of misdiagnosis, abuse at the hands of cruel caretakers, and the unthinkable duration of Martin’s mental alertness betrayed by his lifeless body." (from Martin Pistorius website)

This book confirms my experiences, it is critical to treat all humans respectfully - especially those who are severely disabled, suffering from dementia or dying - all need our care and compassion. We never know if an elderly person with dementia can still understand therefore, what we say around them is very important.

It is also important never to give up on others and in the case of Martin, who fought so hard to "heard", it took just one nurse to see the potential and believe in Martin. We too need to believe in others and not give up on them. Most are unlike to meet someone like Martin, but regardless, we need to support our families and likewise, never give up one them. And that includes their dreams. So often parents will scoff at a child's dream "I want to be a doctor" and say to themselves, "that won't happen", it might if we all help support that dream.

"It was as if I was being sucked deeper and deeper down a rabbit hole. I urged my body to give up. I wasn't needed in this world by anyone and no one would notice if I disappeared. I wasn't interested in the future because all I wanted was to die. So hope was like a breath of fresh air blowing through a tomb when it came. 

I was lying in bed one afternoon when I heard someone talking to a nurse. I knew a little about Myra. She worked in the office where my father got cheques signed in his role as chairman of the management committee for my care centre. But now Myra had come to see me and I didn't understand why because only my family ever visited. 

"How are you Martin?" Myra said as she bent over me. "I wanted to come and see you because I've heard how ill you've been. You poor boy. I hope they're looking after you well here". 

Myra's face was anxious as she look down at me. As she smiled hesitantly, I suddenly realised that another human being, unconnected to me by blood or obligation, had thought about me. However much I didn't want it to, that realisation gave me strength. (Page 198 "Ghost Boy")

Whilst this book will cause tears and anger, it does have a beautiful and positive ending that will also make you cry. Martin does break free from his prison and whilst he still can't walk or talk - modern technology has given him a "voice" and by slowly strengthen his arms, neck and head, he is able to use a computer. He married the girl of his dreams and currently works in IT.

This is a story of strength and encouragement and the importances of never giving up, not only on yourself but with others as well.



*****

Comments

  1. This was a very interesting book. I am constantly amazed at the human spirit, which can go so far. We have little trials and buckle under them, but this book (along with others), shows that if circumstances make it so, we can cope with much more than we would ever imagine.
    love,
    Bets

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    1. As I was reading this I found it difficult to believe he could remain so hopeful that some one, someday will reach out to him and unlock his prison. I was interested to read that he talked to God and found comfort in this, perhaps that alone kept him going. These sorts of books give me strength when times are tough.

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  2. Jo, Thank you very much for the reminder about how important it is to recognise and treat everyone respectfully, and with dignity. My husband's grandmother is 93, and unfortunately suffers from dementia. She now lives in a care home. The carers there are wonderful, and so patient. We are very grateful she is such a good place.

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    1. I am so glad your husband's grandmother is in such a nice place, so to is my mother, but sadly there are still far too many homes that are questionable and our most vunerable are voiceless.

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  3. I had never heard of that book before, but it sounds like a beautiful story! I remember my grandmother sharing that too often if a person comes in contact with a person in a wheelchair, they will talk to the person wheeling the chair opposed to the one in it. It is so sad. I have a friend who is in a wheelchair and she is the sweetest girl you would ever want to meet! Thank you for sharing. ~Sarah (visiting from Radical Femininity)

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    1. I read about it in our local newspaper and fortunately my library had a copy so I was eager to read it.

      You are so right, people just don't see the disabled and do tend to talk to the carer before addressing the person in the wheelchair. They do it to the elderly as well. It is very sad.

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  4. I just recently read that book. I was amazed at how much Martin endured without it making him bitter. I was heartbroken to read of how he was treated. All life is worthy of respect.

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    1. I wondered how he kept going and didn’t just fall into a black hole. He just never gave up. When I read that he had also been sexually abused after everything else I felt so sad and upset for him. Which is why his happiness with Joanna was even more sweet and deserving – after years of being treated worse than an animal at times, he finally founded joy. It should be compulsory reading for anyone working or caring for the aged and the disabled. I looked at a few of his interviews and he has a beautiful smile and he doesn’t look bitter after all his experiences which is an excellent lesson for us all.

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  5. What an amazing story, I'll have to keep my eyes open for a copy I think. It is so easy for us to 'label' people, sometimes in an effort to ease our conscience I wonder… what a dramatic testimony this man must have!

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    1. So worth reading - sad and lovely at the same time!!

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  6. This was neat to read. I'm not sure I could read a book like that, as it sounds quite heart wrenching, but thanks for sharing the story with us in this review! Years ago my dad pastored a small church and there was a dear brother who had cerebral palsy who attended. He could speak, though he was hard to understand sometimes. He is with the Lord now, but I have fond memories of him and his very sunny smile.

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    1. It is heart wrenching, but as Bets and I found, it was very hard to put down. I also went online and checked out photos of his wedding and knew the ending must be uplifting - and it was. Of all the children I worked with over the 2 year period - almost all were happy and smiling and just wanted all the same human interactions that other children want: love, hugs, someone to talk to and to be treated "normally" .

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  7. Thank you for sharing this book review with us at Good Morning Mondays. It sounds like an amazing story and I agree with you that we shouldn't treat people with disabilities any differently than others. Thanks and blessings

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  8. What an incredible story! When you read of a story like that with such joy and hope infused in it, it makes you realise that God really is in control and He knows and allows the trials each person goes through - each person is CHOSEN by Him for their particular journey - some other people might not have gone through those experiences and come out with such a strong testimony. That alone should give us all hope as we struggle through various heartaches and troubles.

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    1. Whilst he only talks about God in one small section of the book, he does say that he spoke to God whilst in his prison and it calmed him and got him through the most difficult times. Here is a quote Martin Pistorius gave in an interview about his relationship with God:

      “As I became fully aware, the only certainty I could cling to when so much didn’t make sense was that God was with me. Without understanding the rules and structure of the church, without a concept of sin, the Bible, or repentance, I simply believed in him. I can’t explain it, other than that, on the fringes of human experience, perhaps I was in a place in which I didn’t need theological teaching to understand faith. The people around me didn’t know I existed, but God did. And I knew he existed. It was instinctual, not intellectual. I started praying to God. I couldn’t clasp my hands or kneel, of course. But as I lay on a beanbag or sat strapped in a wheelchair to keep my useless torso upright, I started to talk to him. I prayed for someone to come and move my aching body. I prayed for him to keep my family safe. I prayed for some sign that one day I would be rescued from my silent world. Sometimes my prayers were answered. Sometimes they weren’t. But when I felt disappointed and powerless, my conversations with God taught me that gratitude could sustain me. When the smallest prayer was answered, I gave thanks to the Lord. Caught in perhaps the most extreme isolation a person can experience, I grew ever closer to God.”

      The woman he married is a Christian and one of the first things they did when they met (she was from the UK) was attend church and bible study.

      http://www.christianitytoday.com/ct/2015/june/martin-pistorius-trapped-inside-my-own-body-for-12-years.htmlutm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+christianitytoday%2Fctmag+(Christianity+Today+Magazine)&start=4

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    2. That's amazing, isn't it? I've often wondered whether people whose reality is different from ours because of some health condition like this (and many other disablements of the mind especially) were given a different ability to know God.

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    3. I wonder that too - those with dementia in particular.

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