A few months ago, I found myself gripped by an incredible true story. It made me feel so very thankful that I have the ability to reach out and interact with those around me – almost involuntarily, like blinking. And yet in the blink of an eye, a young healthy boy was suddenly and cruelly disabled from all the freedoms that made him human.
In this moving and evocative account, TED Talks presents Martin Pistorius and his harrowing experience of a life trapped inside himself. Martin conveys the agony of being unable to communiate, which serves to open our eyes to not only how fortunate we are but also highlights the importance of how freely we contribute to the world – and just how valuable that is.
In his 2011 book, Ghost Boy, Martin Pistorius reveals a poetically poignant narrative about his struggle to breathe words into his life, and life into his words…
As a writer, I naturally endorse the written word, and make a living by communicating and exchanging information with those around me. For the majority of us, words are literally at our fingertips like never before: as we type and text so accessibly and obsessively, keyboards have become extensions of our arms. Deeply immersed in the digital age, we are automatically given a level of power and authority by releasing our opinions into the ether. We’re given an opportunity to have our thoughts and ideas validated and reinforced. The power of sharing experiences has never been more potent, or so easy.
And then a little perspective: an individual like Martin Pistorius, whose extraordinary life story acts as a stark reminder of just how powerful words are. Those verbal tools that we all too-often bandy around mindlessly, they are the foundation of our voice; the key to our freedom and our identity.
Leading a normal boy’s life, Martin was suddenly and punishingly struck down at 12 years old by a rare brain disorder, and slipped into a coma for several years. Unbeknown to doctors and his family however, Martin’s mind had merely gone to sleep. And all the while he was dreaming of words… When he regained consciousness, everyone around him believed that he would remain unresponsive and unaware.
“With no way to communicate, I became the perfect victim: a defenseless object, seemingly devoid of feelings…”
Branded brain-dead and banished from the life he once knew, Martin was thrust into becoming a silent observer of the world, restricted by his condition and the misconceptions of those around him. On his feelings of hopelessness, Martin said:
“The stark reality hit me that I was going to spend the rest of my life locked inside myself, totally alone. I was trapped with only my thoughts for company… I had become a ghost, a faded memory of a boy people once knew and loved.” He described his vulnerability as “a sand castle built too close to the waves”. But his liberty was realised when someone saw the man inside the shell. And Martin’s shackles finally broke away.
“I don’t know if it’s truly possible to express in words what it’s like not to be able to communicate…For me, the worst was the feeling of utter powerlessness.”
In 2015, Martin spoke at a TEDx conference and explained how he felt being a prisoner of his own body, entitled ‘How my mind came back to life – and no one knew’ .
Martin recalls: “I don’t know if it’s truly possible to express in words what it’s like not to be able to communicate. Your personality appears to vanish into a heavy fog and all of your emotions and desires are constricted, stifled and muted within you. For me, the worst was the feeling of utter powerlessness.”
So, with the word comes power. How we choose to harness that power is demonstrated through our communication choices every single day – even down to texting an emoji. When Martin Pistorius received a remote glimmer of hope to communicate, he fought to be heard. And no emoji could have expressed his elation when his tide finally turned.
“Being given a means of communication changed everything. I used the power of words and will to challenge the preconceptions of those around me and those I had of myself…” For Martin Pistorius, the freedom of speech was his get out of jail card.
Having a voice is our ultimate liberator. We free our imagination; we express our thoughts, fears; we vent our anger, our sadness. We communicate our love, our hate – our every chemical reaction. Most of us have this gift of communication – an opportunity, therefore, to alter our world for the better.
Since finding his voice, Martin has been able to lead a life he’d only daydreamed of. He now has a great job, and was married in 2009. Martin Pistorius has inspired minds and captured hearts in sharing his extraordinary and courageous story through his uplifting book and various talks. Let his story not only be a wake-up call to us all; who take for granted the beauty of life we forget to be grateful for – such as our freedom of expression – but to use that power to convey something valuable. Let’s make it count.