The Project

“Mapping Marcus” is a memoir-in-progress.

In some respects, my brother was a savant. While he had mental limitations and, at times, difficulty understanding basic human behavior, he excelled in his memory and spatial intelligence. By this, I mean maps.

If you visited my parents’ house in suburban St. Louis, Marcus would pull out his yellow legal pad and pepper you with questions and facts:

What is your name?

What road did you take to get here?

I-64. 4-lane road with concrete dividers.

…And so on. Before Google Maps, he could direct you pretty much anywhere and give you several alternate routes, as well as how many lanes the road or highway had, etc. His room was filled with containers of maps of cities and states across the country. He probably kept Rand McNally in business.

“Mapping Marcus” is the story of me taking the road less traveled and rediscovering his life. I was trapped in the typical world of a 14-year-old when he died. Reading teen magazines, listening to the grunge and bubblegum pop at the time, I was keenly concerned with fitting in. And in my quaint suburb of St. Louis, my crazy Puerto Rican family with my severely disabled brother stood out. I wanted nothing to do with it.

For years after his death, I locked myself up in a cage of guilt, shame and regret. I kept wishing I had been kinder and more compassionate toward him, and that I celebrated his abilities and motivation instead of being embarrassed.

You never stop grieving. But you do learn how to cope. And for me, that started with forgiving myself for things I couldn’t undo. Through forgiveness, I realized that the best way to honor Marcus was to live a life he would be proud of, to live the life he was never able to. That means acting fearless when I feel scared, exploring when I want to hide, and looking at the world with a sense of curiosity and wonder.

This is the legacy Marcus left me: Decide what to be and go be it. And that’s why this project now lives.

I’m learning American Sign Language, meeting his former teachers at Missouri School for the Blind and taking a trip up to his alma mater of Helen Keller National Center. I’m mapping out the people who changed his life, and hope to pass on the lessons he learned and taught us.

When I reflect on Marcus’ life as an adult, I think about grace. All his life, he worked toward the things that most of us take for granted: A healthy body, the opportunity to have meaningful relationships and the freedom to live a full, happy life. There were times he was frustrated in the isolation of his condition, but he was determined to keep learning and keep exploring.

Now it’s my turn. I invite you to come with us, to walk the paths Marcus mapped out and that I now follow, to experience how he saw and learned about the world.