They all thought he was gone. But he was alive and trapped inside his own body for ten years. In January 1988 Martin Pistorius, age twelve, fell inexplicably sick. First he lost his voice and stopped eating. Then he slept constantly and shunned human contact. Doctors were mystified. Within eighteen months he was mute and wheelchair bound. Martin’s parents were told an unknown degenerative disease left him with the mind of a baby and less than two years to live. Martin was moved to care centers for severely disabled children. The stress and heartache shook his parents’ marriage and their family to the core. Their boy was gone. Or so they thought. Ghost Boy is the heart-wrenching story of one boy’s return to life through the power of love and faith.
I find this book sitting on my desk when I walk into my office. I have been warned in advance that it’s coming, and, like reacting to a severe weather watch, I have made space in my reading schedule and will batten down the hatches. My aim is to get in and out of these pages as quickly as possible – preferably 24 hours or less, because that’s probably all I can take.
Almost ten years after saying goodbye, all roads still lead to Sam, and I have to be careful about how much time I spend wandering around in the forest of the past, because I have a life to live here in the present.
I’m a PhD student in creative writing, so I get through about hundred books a year—occasionally interrupting one to start another. Because I am studying institutions for people with developmental disabilities, my reading material is often bleak. This book, however, took me to places even I would consider the final emotional frontier.
But I knew I had to read this book. For my research, yes, but also because it’s a human thing to do. To acknowledge what people like Martin Pistorius have been through. To bear witness to his journey, and hear the difficult truth about the loneliness and fear that accompany being fully aware of your surroundings and completely unable to communicate.
Everyone can relate to the fear of being put under for surgery but waking up and finding you can feel everything but can’t tell anyone… This was worse. It went on for years—a veritable lifetime. Martin was trapped in a body that couldn’t do a thing he wanted, including telling people he was in there. His pain at not being understood by, or connected to, another person, makes me look back. Go over every moment of the time I had a boy like Martin in my life. In my home. Wondering…how much got lost in the day-to-day rhythm of our lives?
Roll, turn, reposition, lift, carry, bathe, diaper, dress—right arm, left arm—start the feed pump: clamp, flush, meds, flush. Time the seizure—one, two, three, four AM. Get up, go to work. Meet the bus. Start again.
He was six when I met him: a tiny, fragile boy in a tilt-back wheelchair and a giant smile he reserved for a handful of people who could look past his g-tube and seizures and near-constant silence. At six weeks old, he’d been shaken so hard he almost died, but he survived, albeit in a body like Martin’s—one that never obeyed commands or acted independently. He was seven when he began coming to my house for respite. Eight when he moved in with me and my now-wife Nancy, who’d been his carer since he was a three-month-old, just released from the hospital.
Reading this book takes me back, even though I’m not sure I’ve gained enough perspective yet. I have to ask myself: What kind of a foster-parent was I at twenty-two?
Was I too tired to see him clearly? Too affected by my preconceptions of his abilities to try new things? Could he have done more if I could have intuited more?
As many times as we tried to reach him, there was always a part of him we couldn’t touch. His personal reserve. His secret pool. An inner strength I could only guess at but never see.
Caring for Sam was one of the greatest things I will ever do, but contrary to what people often say, it wasn’t really a selfless act. It was a carefully considered choice. A personal decision I made that shaped who I would become. I knew Sam was a strong spirit in a fragile body and that loving him was a risk. Losing him would be a devastating loss. He didn’t just happen to me – we chose each other.
He gave me gifts which continue to reverberate through the years. And losing him did indeed submerge me in a very dark pool. But like fire forges steel, he also gave me the strength to become rather than to recede. Whenever I feel like complaining, getting bogged down in the small stuff, doubting myself and my purpose, thinking of just accepting conventionality, I think of his sly little grin, his hand closing around mine. And I remember to lie on the floor and breathe.
A type-A person needs a damn good reason to sit still and focus on breathing. Meditate. Put emotions above logic and hone intuition like it’s a weapon.
He gave me that.
I’m not afraid of the dark, because I spent hours in the middle of the night listening for seizures, watching for the rise and fall of a tiny chest. The dark envelops me, all these years later, when I wake up at two a.m. and can’t get back to sleep. But it’s a peaceful time. A time to reflect and watch the moon. Let the night wash across me, hovering on the promise of a new day.
Communicating with him taught me to hear what isn’t being said. To look closely at a person’s face: the lift of their eyebrows, the quirk of their lips. Tiny gestures they don’t even know they’re making. The energy that surrounds them. The sound of their footsteps. All of this says more than their words. Observing tells you most of what you need to know before a conversation even starts.
Even though, unlike Martin, Sam never got his words back – never navigated the complexities of language – he still communicated with an eloquence that very few people ever manage. Simplicity. Honesty. Authenticity. Acting like Sam means I’ve learned (and am still learning):
To demonstrate instead of instructing.
To influence instead of directing.
To listen instead of talking.
He was a master and a guide. Trapped in a body that never worked, yes… but living life still. And being loved. That was his greatest power. And his lasting legacy.