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.

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