Every morning I sit down to write a post for Emma’s Hope Book on this computer in my studio and look at the traffic speeding to and from Manhattan on the 59th Street bridge. Sometimes I already know what I want to write about. Often I thought of something the night before, or if Emma did something I feel compelled to write about, I do. But there are other mornings when I have a number of things I want to write about, but none seem ready to be put on the page.
Be honest. I repeat to myself each morning before I begin. But there are some mornings I don’t want to be honest, because honesty can be painful. Some mornings I just want to write some other version of my life, a fantasy that doesn’t require me to dig down into the darkness.
I read a memoir a few years ago, by Karl Greenfeld called A Boy Alone. Karl’s father, Josh Greenfeld wrote a memoir about his son, Karl’s brother, A Child Called Noah several decades earlier. I didn’t love Josh’s memoir, but I was enthralled with Karl’s as he writes beautifully.
(Spoiler alert – do not read the next 2 paragraphs if you have any intention of reading A Boy Alone as I am going to give away the entire ending.)
Toward the end of the book, Karl writes about moving away from home and how over time, as he struggled with addiction and other challenges, his autistic brother seemed to find himself and eventually could not only live independently, but seemed to have a maturity and wisdom Karl was still struggling to obtain. As I read these pages I began to read more quickly, trying to figure out how this could have happened, what therapy helped Noah, what exactly was it that propelled him forward, allowing him to become verbal and freeing him from a life of institutionalization? But Karl was not forthcoming with this information.
Karl ends the book with doctor’s reports from the various institutions Noah was placed in. The reports are horrifying, the drugs, the restraints, the “therapies,” sadly commonplace in such places are all documented in the dry, hollow tone of doctors and caregivers who have completely separated themselves from the human beings they are administering to. As I read, I began to reluctantly realize that these reports were the truth, not the previous pages of Noah’s miraculous progress from institution to independence and I wept. I hated the book. I felt betrayed. I felt manipulated. That book, A Boy Alone has haunted me ever since. Even now years later I cry when I think of it.
I’m nine-years old home sick with the flu. My father comes in to read me a story before he goes out horseback riding. He says to me before he leaves, “I’ll finish the story when I come home.”
“When will that be?” I ask him, turning away from the bright sunlight pouring in through my bedroom window.
“Soon,” he promises.
Only he never came back to finish that story. That afternoon he went over a jump with his horse where there was a low hanging tree branch from a massive oak. His horse cleared the jump, but in doing so my father was crushed by that branch. He fell to the ground, his back broken. Paramedics were called and sped him off to the hospital where it was determined he might not live. Later we were informed he would likely be paralyzed for the rest of his life. He spent many months in the hospital. Every few weeks the doctors would gravely give us their opinions. They were almost always wrong. Eventually he came home, over the years of physical therapy, exercises, sheer force of will and determination, my father was able to walk and even got back on a horse. But the nerve damage to his legs was extensive and as he aged he lost more and more of his strength. The last decade of his life was spent in a wheelchair.
I write this because, though I didn’t know it at the time, his accident changed everything and has informed my life today in ways I could not have imagined. I saw how people treated him. I saw how a wheelchair had the power to change the conversation. Often it was a subtle change, but there was no mistaking the looks of pity, the attempts to disguise their discomfort, the undisguised irritation strangers would display if his wheelchair caused them to slow down, move out of the way or forced them to accommodate him. My father was a proud man, athletic, capable and prided himself in never depending on anyone for anything. And yet, in the end he had to and he hated it.