Think for a moment, if suddenly you could no longer speak, move or make eye contact. You instantly become prisoner within your own body. For many of us, this notion would be difficult to comprehend. I recently watched a TED Talk given by Martin Pistorius, a man who at a young age contracted a virus that attacked his brain. The virus thrust this once active, yet shy young boy, into an imprisoned state within his own body. For 12 years he was thought to be a mere shell, a ghost of a boy he once was. However, that wasn’t so. Within his imprisoned state, he could still understand the world around him, yearned to communicate with his family, and wanted nothing more for his loved ones to know he was there; yet his body wouldn’t allow it. It was by mere coincidence that a new therapist assigned to his care witnessed a light within Martin. She informed his family that she believed Martin was still understanding and advocated the need to provide him with a way to communicate. He was given adaptive technology through a computer and for the first time, Martin communicated to his family that he was still here! You can read more about this amazing triumph and struggle to overcome the odds by searching “Ghost Boy by Martin Pistorius” or click on this link to watch his TED Talk Watch “Martin Pistorius | My Way Back to Words | TEDxKC” on YouTube
The brain is an extraordinary organ.
I am not a neurologist nor do I have any scientific background. I am a mother to a child who suffered extreme brain damage at birth. Much was unknown for Olivia’s future. There was a 50% chance she could have had severe intellectual delay, an inability to react to stimulus, a prisoner within her own body. In the first year of her life, much of this appeared to be true. Olivia did not make eye contact, she did not show any form of communication whether verbal or through body language, and at times she did appear to just be. This was extremely difficult to accept.
We however, chose to not accept it. Deep in my heart I believed my daughter was inside that body, struggling to show us that she felt our love and recognized our voices; felt every kiss and every soft caress of her cheek.
Like Martin, Olivia too was held prisoner by a body she could not control.
I will never forget the first time I witnessed Olivia track a toy with her eyes. At first I second guessed myself; thinking possibly the strong desire I had for her to do it, may have affected my perception. But then she did it again! Tears flowed down my face. To some this moment may seem trivial, but for Olivia it was of huge importance! For the first time she showed interest.
From that moment Olivia’s spark continued to shine. It was as if a light had suddenly switched on inside of her and our little girl was slowly emerging from her inner prison.
Today Olivia is a thriving 5 year old little girl. She has overcome so many odds in her short life. Her journey and fight to overcome the obstacles of Cerebral Palsy is not through. She continues to face challenges daily, but through her courage and determination and the love and support from her family, I believe the future for our daughter will be positive.
On many occasions she has shared, through expression, she would like to become a teacher one day. I smile writing this, because she has been teaching all of us since the day she was born.
“Dreams can be any size you want them to be. But the imprtant thing is that you have one that is yours”~Martin Pistorius