Book Report: “Ghost Boy” by Martin Pistorius

The miraculous case of a misdiagnosed boy trapped inside his own body.

Imagine being a teenage boy and falling into a vegetative state. Then imagine slowly regaining consciousness but being entirely locked into your body, unable to let the outside world know that you’re aware of everything going around you.

What would you feel?

Loneliness?

Rage?

Anxiety?

Despair?

Impatience at wanting to die but powerlessness at being unable to make that happen?

Martin Pistorious felt all that and more. “Ghost Boy” is his first-person account of contracting cryptococcal meningitis at 12 years old, which slowly robbed him of consciousness. After several years of complete darkness, his mind gradually returned, but his body—except for a little control over his eye movements—did not. His family had gotten so used to his vegetative condition that they failed to notice his eyes responding to what was happening around him. Eventually a very attentive aromatherapist named Virna suspected that there was more going on in Martin’s head than people thought. Doctors confirmed her suspicions, and experts found a way to help him use a variety of communication devices to reconnect with the outside world. Over the next several years Martin’s condition improved such that he regained some physical control over his arms, found employment, started a company, and got married. He and his wife just had their first child.

In 2011 Pistorious wrote “Ghost Boy” to describe his fascinating journey, and what it’s like to be present but not seen—like a ghost. (The book was a hit and appeared on the NYT Best Seller list. He even hit the public speaking circuit and gave a Ted Talk. See it here.)

Aside from being lovingly penned, the book is many things. It is, for example, deeply spiritual. Crazily enough, Martin says that even in his darkest, loneliest moments, he felt God’s presence inside his mind, giving him hope and keeping him company. The story is also enraging. According to the author, he was horrifically abused by people who took advantage of his powerlessness—people whom I hope have been investigated and locked up. (His account of being repeatedly raped in a care facility left me shaking and breathless.) And “Ghost Boy” is a love story as true and romantic as anything you’d see on the screen. His now-wife Joanna (pronounced Jonah) shows us all what love, romance and marriage are all about. Martin’s marriage proposal while aloft in a hot-air balloon leaves you soaring in the basket, with them.

I knew little of this book before I read it, but it became one of those serendipitous, just-at-the-right-time reading experiences. (Ever had one of those?)

In particular, I could not help but connect with Martin’s father, Rodney, who shared Martin’s caregiving with his wife and Martin’s mother, Joan. My wife and I are blessed beyond measure that our own son’s recent paraplegic disablement (due to a very rare neurological disease) has not left him in a vegetative condition. But we belong to the Pistorious family more than we don’t, and I felt in Rodney I had a friend and companion. Mr. Pistorious woke every two hours to turn his son’s body, to protect against bed sores. He bathed his son at night and hauled him around from appointment to appointment. He gave up professional opportunities to make sure his son’s needs were prioritized. He argued with his wife about caregiving choices and worked overtime as a Dad to make sure his other two children (one boy and one girl) did not feel neglected.

Finally, he and his wife struggled mightily to encourage Martin’s independence while gritting their teeth, wiping their eyes, and holding each other tight as their freedom-seeking son rolled away onto a plane by himself, to start a new, independent life in the UK, thousands of miles away—to face God-knows-what.

Friends, I both dread and cannot wait for the day when our boy rolls away.

“Ghost Boy” will stay with me for a long time. Its lessons are many and they will linger. For starters, the book has much to say on what it means to be human. You don’t have to move your body or even use your mind to bear God’s image and be fully alive. Indeed, Martin is more alive than most. But the book also reveals what it means to be humane. Even as some of the people around him were exposed as negligent criminals, many of Martin’s friends, family and caregivers were forced to dig deep and discover new reservoirs of compassion and strength they didn’t know they had.

But more than anything, Martin’s book reminds me of something I really need to hold onto in life, and something you do, too: We are never alone in this world. And we are never alone in this world in two ways. First, even at our loneliest, there is someone else, somewhere, facing similar trials—and overcoming them. Somebody always has it worse and yet refuses to give up. We do not necessarily need to know those people to draw strength from them.

And second, even at our loneliest—when we maybe even don’t want to be alive—God is present in our darkness. Our Father is urging us forward, caring for our wounds, taking us to appointments, changing our clothes, sustaining the lives we don’t always want to live. He is present in our minds, hearts, and bodies, reassuring us—if we will hear him—that He has always been with us, and ever will be. Even as the world ignores us and passes us by, mistaking us for ghost boys…we will never be anything but the apple of our Father’s eye.

-MRH (5/30/2019)