HARLOW, England — A man in the UK is sharing his story of spending 12 years trapped in his body after also being in a coma for two of those years.
Martin Pistorius became ill when he was just 12 years old, and his condition continued to deteriorate until he was unable to move or communicate with the outside world.
“I was completely unresponsive,” he told the Daily Mail. “I was in a virtual coma but the doctors couldn’t diagnose what had caused it.”
Doctors weren’t completely sure what was wrong with the boy, but tried various medicines to see if they would help—all to no avail.
“I was treated for tuberculosis and cryptococcal meningitis, but no conclusive diagnosis was made. Medication after medication was tried—to no effect,” Pistorius explained. “I’d traveled beyond what medicine understood. I was lost in the land where dragons lie and no one could rescue me.”
Rodney and Joan Pistorius, Martin’s parents, were told by the doctors to take him home and let him pass away peacefully. They advised that he had the brain function of a three-month-old baby.
But Pistorius kept going. And after two years, he regained consciousness. But as he could not communicate, no one else knew what had happened to him.
“Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up,” he told reporters. “I was aware of everything, just like any normal person. Everyone was so used to me not being there that they didn’t notice when I began to be present again. The stark reality hit me that I was going to spend the rest of my life like that—totally alone.”
For the next several years, Pistorius spent much of his time at a care center, as his father would rise early at 5 a.m. to get him dressed and out the door, and then would bring him back at night to feed and bathe him, and put him to bed. His caretakers played the children’s program “Barney and Friends” for him all day—something that Pistorius said he despised, but no one knew it as he couldn’t tell them.
“My mind was trapped inside a useless body, my arms and legs weren’t mine to control and my voice was mute. I couldn’t make a sign or sounds to let anyone know I’d become aware again. I was invisible—the ghost boy,” he said. “I cannot even express to you how much I hated Barney.”
Pistorius was also saddened when he saw life seemingly moving on without him as no one knew the he was really there.
“I have a younger brother and a sister, and they and my parents would go on holidays without me, which was extremely difficult,” he told reporters. “The worst part was that I had a perpetual fear they’d have a car accident and die, and would never come to fetch me. … There were many times when I cried inside. I reached a point where I essentially gave up.”
But in his time of darkness and discouragement, Pistorius eventually determined that he was going to make the most of the situation. He began telling time by noting the sunrise and sunset each day, and at the age 0f 25, a therapist finally noticed that Pistorius was making small gestures to indicate that he could communicate. He eventually regained use of his limbs and could make facial expressions again.
Now, Pistorius, 39, is married and smiles widely. While he cannot yet speak on his own, he uses a computer to express his thoughts and feelings. Pistorius has now written a book called “Ghost Boy” to share “the miraculous story of a misdiagnosed boy trapped inside his own body.”