The Incredible Lessons I Learned From My Son With Brain Damage
A father comes to terms with the difficulties and joys of raising a son with brain damage.
My son Zach was born with brain damage that occurred during his birth. His brother Gerry—older by three minutes—is fine. Zach is now 24, but his comprehension skills are roughly that of an eight- or nine-year-old. He can read, but he doesn’t understand many of the sentences. He can’t add a hundred plus a hundred, although he does know the result is “a lot.” I took him to see the movie Spartacus when he was nine, and after a blood-flowing scene at a Roman villa where Kirk Douglas single-handedly killed two million buffed-up soldiers with a plastic knife, he turned to me and said, “Look, Dad! A pool!” He has always loved pools.
As Zach grew out of childhood, I never knew how much he would understand. While his vocabulary expanded rapidly, his knowledge of what words meant did not keep pace. When I tried to explain something abstract, I could sense him sifting through his hard drive with its millions of data points. But the hard drive did not help him with concepts like preventive health measures or racism. He knew who the president was but not Osama bin Laden. He knew something terrible had happened on 9/11, but when the anniversary came, he called to wish me a “happy 9/11!”
Instead, our relationship had been largely predicated on games. He loved goofy hypotheticals: What would happen if he did something I told him he could not do. When I kissed him good night, he invariably asked me if there was a certain word or name he could not say after I turned out the lights.
“What can’t I say?”
“You can’t say Rick Lyman.”
“What happens if I say Rick Lyman?”
“I will have to come back upstairs.”
Dressed in his usual T-shirt and gym shorts, anticipating the tickling war we referred to as cuddies, he began to giggle. I walked down the stairs and waited at the second-floor landing. He was plotting strategy.
“RICK!” he screamed. (I did nothing.)
“RICK LY!!!!” (I did nothing.)
I ran back upstairs and banged open the door. It was on. I threw pillows at him. He threw pillows at me. I got ahold of him and tickled. He kicked me in the head. I chased him around the room, became exhausted, and had to stop. He seemed exhausted as well. I rolled the top sheet over him, kissed him good night, and went back downstairs. From above I could hear a pulsating drum getting louder and louder.
“Rick Lyman … RICK LYMAN! … RICK LYMAN!!!”
He could have gone on forever. At any time. At any age. But when he turned 21, after nearly 15 straight years of doing it, I decided it had to stop. I was ambivalent about giving it up, but I could not stand it anymore. It only reaffirmed our frozenness.
“Zach, you’re 21 now. Not six. This is what six-year-olds do. I can’t do it anymore.”
“There is nothing to be sorry about. You’re just too old. You’re 21. What happens when you are 21?”
“You’re not supposed to do things like that anymore.”
“That’s right. Do you understand why?”
“I’m 21; I’m kinda too old for this now.”
I closed the door to his room.
I stood right outside, then burst back in. “Just don’t say good night.”
It was on again. I knew it was one of the things he loved about being with me. I was scared of losing it.
It is strange to love someone so much who is still so fundamentally mysterious. Strange is a lousy word. It is the most terrible pain of my life. As much as I try to engage Zach, I also run from this challenge. I run out of guilt. I run because he was robbed, and I feel I was robbed. I run because of my shame.
It is strange to love someone so much who is still so fundamentally mysterious.
But whatever happens with Zach, I know I cannot think in terms of my best interests, even if I think they are also in his best interests. Zach will be where and who he will be. Because he needs to be. Because he wants to be. Because as famed physician Oliver Sacks said, all children, whatever the impairment, are propelled by the need to make themselves whole. They may not get there, and they may need massive guidance, but they must forever try.
Buzz Bissinger is an author and a journalist. Zach lives with his father in Philadelphia and his mother in New Jersey.
Father’s Day: A Journey Into the Mind and Heart of My Extraordinary Son, by Buzz Bissinger, Copyright © 2012 by H. G. Bissinger, is published at $26 by Houghton Mifflin Harcourt Publishing CO., hmhbooks.com.