Martin Pistorius was a fairly normal boy living a fairly normal childhood in South Africa. But in 1988, at age 12, he came home from school with a sore throat. Over the next few days he lost interest in eating and only wanted to sleep. He ended up in a wheelchair, silent and unresponsive. The doctors explored psychological causes and then ran every physical test they could.
It took about a year for the doctors to confess that they had run out of treatment options. All they could say was that I was suffering from a degenerative neurological disorder, cause and prognosis unknown, and advise my parents to put me into an institution to let my illness run its course. Politely but firmly the medical profession washed its hands of me as my mother and father effectively were told to wait until my death released us all.
But at about age 16, he started “waking up,” or becoming aware, for short periods of time. By age 19, he was fully conscious. But he couldn’t let anyone know. He couldn’t speak, he couldn’t control his limbs. Even when he did begin to regain movement and could lift his head up and down and smile, people didn’t recognize that the movements or expressions were purposeful. So he was trapped in his body for six more years. At times he was frustrated and angry. Other times he used his imagination to escape into fantasy.
I resembled a potted plant: something to be given water and left in a corner.
He lived at home, but spent his days at a care center while both parents worked. One of his caregivers, who used to give him massages to work his stiff muscles, thought he might be more aware than previously thought and arranged to have him assessed.
We come to rest in front of a large sheet of acrylic glass suspended on a metal stand directly in front of me. Red lines criss-cross the screen, dividing it into boxes with small black and white pictures stuck in some of them. These line drawings show simple things—a ball, a running tap, a dog—and Shakila stands on the other side of the screen watching me intently as I stare at them.
“I want you to look at the picture of the ball, Martin,” Shakila says.
And…he did. After a series of tests, both to test his responses and different kinds of communication devices, Martin was equipped with pictures of symbols he could stare at in answer to questions and eventually outfitted with a computer which gave him a “voice.” Learning to communicate was a long, painstaking process, but it was worth it.
“If someone does not expect or is not expected to achieve, then they never will.” (Dr. Diane Bryen)
Eventually he regained more motor control, went to classes, held down several jobs, and even married! He wrote Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped in His Own Body to share his story.
One of the hardest adjustments for him was making decisions. He could remember nothing from before his illness, and life had been structured around him for so long, he didn’t know how to make decisions at first. He was glad to be able to let people know his food was too hot or cold, he was thirsty, he’d like salt, etc. But even years later, when his girlfriend too him to buy some shoes, he was overwhelmed. He had only ever had the same kind that someone else had bought him, and there were so many choices, as well as the overstimulating atmosphere of so many people and loud music, that he broke down.
Some people caring for him were excellent. Some were thoughtless or just doing a job without care for the person inside the unresponsive body. “Do they really think that a limited intellect means a child can’t feel viciousness in a person’s touch or hear anger in the tone of their voice?” Something else that came to light after Martin began to express himself more extensively was that he had been horribly abused, especially in a longer term care facility that he had been placed in if his parents went on overnight or longer trips. He had been called names, slapped, pinched, handled roughly (thrown into a chair so hard he fell face first), neglected, and sexually abused.
He had a faith that sustained him:
The only person who knew there was a boy within the useless shell was God, and I had no idea why I felt His presence so strongly. I wasn’t exposed to the rituals and traditions of worshiping Him at church and knew that I hadn’t been before my illness because my family, although they believed in God, didn’t attend. Yet somehow I instinctively knew that He was with me as my mind knitted itself back together. At times it felt confusing to be surrounded by people, utterly alone and yet aware that God was my companion. Yet my faith didn’t waver. He was as present to me as air, as constant as breathing.
The one person I talked to was God, but He wasn’t part of my fantasy world. He was real to me, a presence inside and around that calmed and reassured me…I spoke to God as I tried to make sense of what had happened to me and asked Him to protect me from harm. God and I didn’t talk about the big things in life—we didn’t engage in philosophical debates or argue about religion—but I talked to Him endlessly because I knew we shared something important. I didn’t have proof that He existed, but I believed in Him anyway because I knew He was real. God did the same for me. Unlike people, He didn’t need proof that I existed—He knew I did.
One unsung hero in the book is Martin’s father. In Martin’s silent years, he heard arguments between his parents about his care. His father wanted to keep him at home. His mother wanted to put him in a full-time care facility, as the strain of his care was affecting their marriage and the rest of the family. But his father insisted Martin was still part of the family and needed to remain. His mother, for a time, distanced herself from Martin, so at home all his care fell to his father, who would get up early to feed and dress him and take him to the care facility, work long hours, bring him home and feed, bathe, and put him to bed. Basically, he didn’t have a life beyond work and caregiving for years, and he did it without complaint. Martin appreciated his “quiet and steady presence,” and eventually his mother came around as well, helping him tirelessly to increase his “vocabulary.”
This book is sad and horrifying on one level, considering all that Martin endured. But it’s inspiring on another that he triumphed over it. I particularly loved what he said as he was falling in love with the girl who would become his wife: “I’ve lived my whole life as a burden. She makes me feel weightless.”
It encourages me as my mother-in-law has become less and less responsive that perhaps she does hear and perceive more than she can express, and even if not, the way she is handled will make her feel secure and loved even if words aren’t getting through.
It also angers and saddens me that such abuses and inhumane treatment goes on in care facilities. We’ve come across our share of both good and bad caregivers in the various facilities my mother-in-law has been in. That Martin should have suffered such abuse is atrocious, but that in some cases, other caregivers observed and laughed is just infuriating. And the fact that more than one could wheel him away long enough to privately sexually abuse him without anyone questioning what was going on, where they were, why they were gone so long shows up the need for better monitoring. Unfortunately, in our experiences and I am sure all over the world, those places are woefully understaffed.
But it inspires me that some caregivers went the second mile in their concern and care. The one who first noticed that Martin seemed aware and responsive used to talk to him while she worked, and that’s one thing that caused his responsiveness. After trying to make a connection with others and failing, Martin essentially shut down inside himself. As this caregiver talked with him, he would look at her and follow her with his eyes. That she would notice this and then act on it speaks so well of her. That should be the norm, but too often facility caregivers slog through the everyday thankless monotonous tasks on autopilot. We have had our share of excellent caregivers as well who take time to interact with the patient as a person and notice the details that make a difference in their care and comfort.
Some readers would want to know that there are a couple of bad words in the book, and the section on Martin’s sexual abuse is graphic but not titillating and is mostly contained in one chapter. There is a video of a TED talk with Martin here, and a sweet interview with his wife here. They made this video and submitted it along with the manuscript when they were seeking a publisher for the book:
(Sharing with Semicolon‘s Saturday Review of Books, Carol’s Books You Loved)