At the age of twelve my world, my life and that of my family underwent a devastating change. A brain infection transformed me from a vibrant happy little boy into a seemingly empty shell. As memories of my former life faded into the abyss and I fought my way back I began to realize that I was trapped inside my body.
The next 14 years of my life were spent in institutions for the profoundly intellectually and physically disabled. I had become a ghost, unable to communicate and nobody believing I understood anything!
Thankfully my life began to change in 2001 when a person who was caring for me at the time happened to see a program about augmentative and alternative communication (AAC) on television. This set a chain of events in motion that ultimately led to where I am today.
I went for an AAC assessment, where it was discovered that not only did I have the ability to communicate but that I understood far more than was originally believed. Learning how to become a proficient communicator through the use of AAC was exciting but really challenging! However, finally having the ability to communicate meant that I could express my wants, needs and thoughts.
In 2003 I stopped going to the care centre and started working. A new adventure had begun and looking back on it now, it’s been quite a ride. Lots of highs and lows, joys and tears along the way – it is sometimes hard for me to believe all that has happened in a little over a decade.
While there are many lessons I learned through my journey four main things come to mind.
The first is hope, no matter how despairing things may look, there is always hope.
The second, the difference one person can make. There were many times were I had lost all hope and a seemingly random stranger smiled at me. That simple act, that connection with that stranger with kindness in their eyes was enough to reignite hope within me. Another time while gravely ill, wanting to die, I received a visit from someone totally unexpected. Suddenly I realized that at least one person cared if I lived or died, so I began to live again. There are many more I could mention who knowingly or unknowingly made a difference to my life.
The third is determination. I have faced and triumphed over more adversity than a lot of people will face in their lifetime and often it has come down to simply never giving up. Trying just one more time, fighting when everything in you is telling you to quit and believing you will get there even when you don’t know how.
Finally, love. In all its forms transforms lives, gives you a reason to keep going, to live and brings comfort and healing. Never underestimate the power of love.
I have had an incredible journey through life so far. For years people said I should write a book. It was something I had often thought about. However, there always seem to be some or other reason not to write a book, until 2010 when almost out of nowhere things fell in place. I had the time, I was emotionally ready and I finally really wanted to tell my story. In 2011 after nearly a year of work, my book Ghost Boy was published. To my amazement, my story has become an international best seller, described by The Sunday Times as “It is a deeply affecting and at times shocking book… The Diving Bell and The Butterfly but with a happy ending”. My greatest hope in writing my book is that will mean something to someone, and if I am really lucky make a positive difference to their life.
– Martin Pistorius
For more information on Martin: http://www.martinpistorius.com/
About Martin’s book “Ghost Boy”: http://www.ghostboybook.com/