Locked-In Syndrome

Any illness that takes a life is a tragedy, but sometimes an illness doesn’t take the life, exactly, it just stops everything about that life…in its tracks. In January of 1988 at age 12, Martin Pistorius of South Africa came down with a strange illness. his illness was so unusual, that his doctors weren’t even sure what it was. Nevertheless, they did speculate that it might be Cryptococcal Meningitis. Cryptococcosis is a potentially fatal fungal infection of mainly the lungs, where it presents as a type of pneumonia; and also, the brain, where it appears as a meningitis. The symptoms seem common enough…a cough, difficulty breathing, chest pain, and fever are seen when the lungs are infected. When the brain is infected, symptoms include headache, fever, neck pain, nausea and vomiting, light sensitivity, and confusion or changes in behavior. It can also affect other parts of the body including skin, where it may appear as several fluid-filled nodules with dead tissue.

As the disease progressed, Pistorius got progressively worse. At first, he lost the ability to move by himself, then his ability to make eye contact, and finally his ability to speak. His parents were told their son was essentially in a vegetative state, basically they were told he was almost brain dead, that he wasn’t “really there” and would die soon. It was the most devastating news a parent could hear, but Pistorius didn’t die. He just stayed in a vegetative state for the next 12 years. His parents couldn’t give up on their son, and so, they took care of him…bathing, dressing, and feeding him. They days turned into years…years of grieving, sadness, weariness, and a sense of having made a mistake, for not “letting him go” sooner. The weariness got so bad that one day, not knowing her son could hear her, Joan Pistorius told him, “I hope you die.” It was a harsh thing to say, but she thought he was brain dead, and she was simply exhausted.

As Joan Pistorius would later find out, to her horror I’m sure, her son heard and understood every word. Somewhere between the ages of 14 and 16, Pistorius had begun to wake up…slowly. At first, it may have been barely noticeable, but at some point, it got to where Pistorius later recalled, “I was aware of everything, just like any normal person.” He could hear, and very much understand and process what he heard, but he couldn’t say or do anything about what he heard or let anyone know that he had heard. The condition Pistorius had, is known as “locked-in syndrome” and can be caused by a stroke, traumatic brain injury, infection, or drug overdose. There is no known cure. I’m sure the situation was even more frustrating for Pistorius, than it was for his mom. Although Pistorius could see, hear, and understand everything, he couldn’t move his body. “Everyone was so used to me not being there that they didn’t notice when I began to be present again,” he later recalled. “The stark reality hit me that I was going to spend the rest of my life like that – totally alone.”

Pistorius made a conscious choice to disengage from his thoughts as his way of coping. Because of his condition, Pistorius spent a lot of time at a care center while his mother worked. He hated the children’s TV show Barney, and that was on constantly there. That show led him to start reengaging with his thoughts in an attempt to take some control of his life. As his thought life improved, so did his body. Then, one glorious day, a relief worker at his daycare center noticed his slight movements and realized Pistorius could communicate. She immediately told his parents, telling them to get another evaluation. Finally, they knew he was conscious. His recovery wasn’t instantaneous, of course, but by age 26, he could use a computer to communicate. Pistorius later enrolled in college, majoring in computer science and started a company online. It was a long road, but he has come full circle, by 2011 when he published his memoir, “Ghost Boy.” Pistorius met his wife Joanna, who is from England in 2008 through his sister Kim, who had moved to there. After meeting Joanna, he moved to England too, and they were married in 2009. By that time, while still using a wheelchair, he was racing in it. Their son, Sebastian Albert Pistorius, was born a few months later.