This is an essay I’m currently writing and working on. Decided to share some of it today. The title makes reference to my oldest brother’s inability to talk. That’s not really discussed here. In French (I think) it’s: Mon frère, on parle dans le silence. Because I like to translate my titles into French.
My mother told me once, after my oldest brother’s death, that I might not quite feel the gravity of it all, of death, of losing a brother, of his disability. I understood then that this was probably true, but even now, so many years later, I still do not quite understand it all and I have given my life to understand something of death, of growing up without an able older brother—without two able older brothers—and I continue to come back to the themes of longing for a childhood where I could be the younger brother, where I could be teased by Aaron in words and outrun by KC in the fields.
We sang Amazing Grace at Aaron’s memorial service. When we buried the metal box with his ashes, surrounded by oaks and weeds, pillars of dust rose up from a rusted tractor in the field below. I could also see the high school and the baseball field in the distance. It was there, behind the dugouts, where I imagined the namer of this small town stood, when he pointed up to the sky at a bald eagle circling, it’s wings opened wide. This Native in my mind holds his hand in the direction of the bird, but does not name it, for it is too beautiful and too majestic. He therefore names the land in its shadow after it.
Yoncalla. This is where I grew up. Where I lived when Aaron died and where he is buried now underneath the oak trees on the hill, underneath the shadow of what we cannot name.
I remember Aaron standing in the bathroom, his diaper at his feet, and my mother leaned over, wiping him. The Cubs game played in the living room and hot dogs boiled on the stovetop. It was Saturday. If Aaron had lived with us, my mother wiping him and the stink of it down the hallway would be a common scene, but he only visited.
When Aaron turned three the doctors diagnosed him with tuberous sclerosis complex (TSC). His mental faculties diminished and he stopped talking. He used to say Daddy and Mommy, afterward he hardly looked them in the eye.
TSC is a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. A combination of symptoms may include seizures, developmental delay, behavioral problems, skin abnormalities, lung and kidney disease.
I had to Google search TSC much like my mother did in 1994 when we first connected to the Internet in our house. She spent hours in front of the monitor, waiting through the slow loading process, and coming to the same conclusion as the doctors: Aaron would live a long life.
1979, the same year Aaron was born, Manuel Rodríguez Gómez, head of the Mayo Clinic’s Pediatric Neurology department, edited the only textbook on TSC for the next twenty years. And in a 1991 Mayo Clinic publication, “Causes of death in patients with tuberous sclerosis,” states, ”Leading causes of death include…status epilepticus or bronchopneumonia in those with severe mental handicap.” My mother no doubt read that line, “those with severe mental handicap.” With autistic like conditions, severe seizures, and an inability to take care of himself, she understood severe mental handicap. She felt it in her back and bones. She raised five children in all. When Aaron was nine my father made the difficult decision of putting him in a group home. The effort to raise so many children with so many needs, my Father realized, would break my mother physically and emotionally. But moving Aaron out of the house broke her no matter what. In all those hours of studying TSC and the obvious, the inevitability of Aaron’s death so thoroughly disclosed itself from her. She called it an act of grace.
Two weeks before Aaron’s death he was admitted to the hospital with pneumonia. I was almost 12. A few days before he was hospitalized we drove to Roseburg and picked him up from the group home and went out for ice cream. My mother fed Aaron vanilla ice cream from a dish, but the ice cream hurt Aaron’s teeth so Mom offered it to me. Aaron drooled and his drool grossed me out so I didn’t eat his leftover ice cream. That was the last time I saw him, afraid of his drool in an ice cream shop in Roseburg, 1997.
When Aaron was born my mother and father were juniors at the University of Idaho, she an art education major and he business. Their plan, before Aaron, was to teach at the same high school together. But the only art class she ever taught was when she home-schooled the four of us. Before Aaron passed away she painted with watercolors and sold many of her paintings or gave them away as gifts to friends and donations for auctions. She taught us about the primary colors and how to make green and orange and purple. Once, we mixed all the colors together thinking we’d concoct a super color, but it only made black and from black we could make nothing more.
I begin with the color black. I begin with all the stories poisoned on the palette. I don’t know where the colors come from, but when I tell the story they begin to form. At least I think I see them. To anyone else they could be monochrome pictures. To me they’re apparitions rising in the sky. Stories about my childhood are stories about who I am, but I cannot understand them. They rise too high and too far for me to understand their truths. I can only point at them and watch their shadows streak across the ground.
This is the story of my brother Aaron. Over there is the story of my brother KC. And there, much closer and lower, that’s my story. Sometimes they blend together, other times they’re separate. We live in a liminal space where we think we know something about the world when really something bigger is happening. Isn’t time so strange, how it let’s us be comfortable with the present and then we realize how different our present is, how distant our past, how short our future? It’s so hard to look away from my beginnings. In contemplating my story I gain the growing sense of something beyond the story. A majestic power floating in the sky, but I cannot point to it and I cannot name it. It eludes my grasp. Is this an act of grace?