Sep 05, 2013 0 Share

Brave Heart

The author's brother putting a large jigsaw puzzle together.
Photo by Donna Fischer

Over supper one night, I sat down with a book I've read many times: Roland Merullo's novel, “A Little Love Story.” I flipped through the pages, starting at an arbitrary spot, just letting myself enjoy the language and the characters once more. Sure, I knew exactly how it would all turn out. Sure, I've read the first page so many times I practically have it memorized. But even so, is there really a more beautiful, poetic, mysterious first line than this: “Five miles below I dreamt the blue Pacific, scalloped with whitecaps and looking like it had been frozen in time” … ? 

Merullo's novel centers around a young woman named Janet, who is dying of cystic fibrosis, and Jake, the man who loves her. Jake, the narrator, is a portrait artist. As he walks with Janet through what they both believe to be her last days on earth, he's also attempting to complete a painting of her. In the process of working on the canvas one night, Jake remarks on how much he's learned about Janet since he first began painting: “She looked smart and pretty, when in fact she was smart and pretty and unbelievably brave.” He recounts the horrors she lives with, lives through. Cystic fibrosis means constant coughing and spitting up mucus, traumatic and invasive surgeries, and Jake stands in amazement that Janet goes about living as “normal” a life as possible in the face of all this. He cannot fathom how much effort it takes just for her to breathe, just for her to do this simple thing that most of us take for granted every moment of every day. 

He says, “There was no way to measure bravery like that.” Even so, he knows that most other people don't see it that way. Though Janet had the courage of a hero, she faced the world's bias and derision on a daily basis. People who didn't know about her diagnosis would make nasty comments, ignore her, or at the very least, keep their distance. Even in the face of these misunderstandings, Jake marvels, Janet has tried to keep her head up, to stay kind, to stay human. 

And it was about here that I started crying and couldn't stop. Because all at once, I saw something in the passage that—despite my many readings—I'd never seen before. I saw that, if you changed around the specific challenges and replaced “cystic fibrosis” with “autism,” you'd have a gorgeous, accurate, intense description of what life is like for people on the spectrum … for my brother Willie, some of my friends, and extended family members too. Every day, they face a world that largely doesn't accept or understand their differences. Every day, they get out of bed and do the best they can when fundamental life skills like eye contact or speech or physical touch or social interaction don't come naturally to them. Every day, they move through the world knowing that they are different, that they were handed challenges the rest of us can only imagine dealing with. And yet—at least for the people I am privileged to know—the difference doesn't make them bitter. They don't give up. They show up for their lives, their families, themselves. 

And sometimes it just slays me that, much as I love them, I can't take away the times when no one has been there for them. The times when they've faced the nasty looks and judgments and isolation and misunderstanding. God, what I wouldn't give to erase every one of those experiences. But that's not in my power, and perhaps that's best. In a kind of inexplicable alchemy, all those awful things actually helped make them the strong, resilient people they are today. 

Though the things they've endured can seem unbearably dark to me at times, those challenges ultimately fade into the background. So maybe I don't need to look at those difficulties so closely, because they're not what remains in the end. Maybe the light in their eyes is where I need to look instead. Because Merullo's narrator is right … there's no way to measure the bravery I see there.