Locked-In Syndrome: The Silent Witness

Locked-In Syndrome, or Gullain-Barré Syndrome is an extremely rare neurological disorder affecting only one in 100,000 people a year. This syndrome causes total paralysis excluding the eyes and leaves its victim cognitively aware of their inability to communicate or move. It can be caused be a variety of ailments: A brain stem stroke, traumatic brain injury, infection, overdose, or diseases that destroy nerve cells such as multiple sclerosis. Many who are affected by this cruel affliction do not survive due to medical complications, while a very lucky few are able to claw their way back to the surface.

At twelve years old, Martin Pistorius began complaining to his mom about a sore throat and a headache. He was sent to bed and within hours, he was slurring his speech and unable to form words. Within days, he stopped moving altogether and was declared essentially brain dead and had the cognitive functioning of an infant. His family mourned the Martin they once knew but had faith that he would return to them someday. He remained in this state for the following four years, unable to move or speak despite gaining back his consciousness. He describes it as everything being in black and white and out of focus and color slowly started returning to everything. He fought with every ounce of his strength to move his eyes, to signal to his desperate parents that he was there. He had to bare witness to his parents marriage falling apart and his mother wishing for his death because of the pain his condition had inflicted on their family for so long and he could do nothing.

Martin’s biggest fear was that his family would leave him in a full time care facility to die without realizing he was aware of what was happening. When his family went on vacations they would put him into part time care facilities where he would be purposely dropped on hard floors, sexually assaulted, and emotionally abused. He claimed that he was the perfect victim because he could not communicate or speak out against his abusers.

He eventually gave up trying to communicate and attempted to kill himself by moving his head inside of a plastic bag. In that moment, he reached his lowest point. It wasn’t until one special nurse came along to realize that his eye movements had patterns and there was a twinkle in his eye when she spoke to him; she knew in her heart he understood her. For the following three years she learned to communicate with him using eye movements and slight head nods. It had been twelve years that no one noticed him, and he finally found his saving grace.

The nurse fought to have his cognitive functioning tested once again and he proved to have full understanding of his surroundings and what happened to him. He soon mastered how to use a computer, how to type and how to use synthesized speech. He then slowly taught himself how to read and write again and graduated from college in education. He now travels around the world as a guest speaker and is married with a family.

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About Fehmeeda Farid Khan

A freelancer, blogger, content writer, translator, tour consultant, proofreader, environmentalist, social mobilizer, poetess and novelist. As a physically challenged person, she extends advocacy on disability related issues. She's masters in Economics and Linguistics along with B.Ed.

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