I am always, I am sometimes tough
I am sometimes heroic
I am sometimes tough
I am always, I am always brave
I am always tough
I am sometimes invisible
I am always brave, heroic
I am always, I am sometimes brave
I am sometimes, I am always tough.

Jesse Cooper

Marianne Leone Cooper wrote the book that stuck to my ribs at the end of 2010: Knowing Jesse.

Way off our usual path of wonkery and literary modernism, this is a book (and a writer) that ambush the heart, that confront our numbness with numbers and the new. It’s a book that feeds our neglected hunger for a humanistic revival, for a transformation of consciousness. It is Marianne Leone Cooper’s fiery, often very funny account of her son’s brief, brilliant life. Jesse Cooper, as she writes, was “an honor-roll student who loved to windsurf and write poetry. He also had severe cerebral palsy and was quadriplegic, unable to speak, and wracked by seizures. He died suddenly at age seventeen.”

Marianne Leone played Joanne Moltisanti on The Sopranos for four seasons on HBO. Chris Cooper, her husband, is a supporting-part superstar in Hollywood. Knowing Jesse is a celebrity-proof story of love-struck strivers from acting school bringing up their baby in Hoboken in the 80s, about their readiness, as it turned out, to be led by their hearty, heroic, sometimes brave, sometimes invisible boy Jesse. By the 6th grade, after storming their way into mainstream public-school classes in Kingston, Massachusetts, Jesse was writing compelling poems, as above — each with its own rhythm, design and heart:

I love that poem. What I remember when Jesse was writing that poem is how insistent he was on the way it looked on the page, which I thought was really interesting. “I am sometimes invisible” grabs you by the throat in that poem. I actually thought of calling this book “sometimes invisible,” because people with disabilities are sometimes invisible in our society… When you’re in middle school you have these heroic self-images, but he also knew that he was sometimes invisible.

We never downplayed the disability. I used to talk to Jesse and say you know, Jesse, you’d be a master of the universe if it weren’t for this disability. You would be a little white boy with a movie-star daddy, and more money than 99 percent of the world deals with every single day. But we are a minority. And because of that he was well schooled in Martin Luther King and Ghandi and all of those movements. I wanted him to be politically aware of what it meant to be a minority… In sixth grade, when it was black history month, the teacher says: I want each of you to pick a black personage to be. Everyone in the class picks a sports figure, except for Jesse who picks one of the kids who integrated Little Rock High School. And why is that? Because we read a book about it, together. About what that meant…

I did worry that I was grooming him to be more of an insurrectionist than maybe his own temperment would have made him. But I think he agreed. “I’m sometimes invisible” tells me that he got it. And his picking not a sports figure, but the kid who integrated Little Rock High School, told me that too. I wanted to give him a vision. He could take his intellect, have a life of the mind, and thrive with that.

Marianne Leone Cooper in conversation with Chris Lydon in Kingston, MA, January 6, 2011