By Elizabeth DeVita-Raeburn —

A few years ago, I ended up at the American Folk Art Museum quite by accident. A friend was visiting from out of town, and we’d intended to go to the newly opened MOMA. But the lines were insane. Next door, at the AFAM, however, there were no lines at all. So we thought, what the heck? It’s a great museum. But what very much caught my attention was an exhibit on prison art.

To be honest, I don’t remember the details. But the idea that these people were expressing what it was like to live in captivity, in close quarters, without much hope of getting out, suddenly struck a nerve. My brother, in a sense, was a prisoner. He hadn’t done anything wrong. His body, or rather his immune system, had. But the end result was the same: He ended up confined to 10 foot by 10 foot room for the rest of his life.

As a kid, I couldn’t think my way into what it felt like to be him. And he’d been in there so long that it had become normal to me. It never occurred to me, or rarely, that it didn’t necessarily feel normal to him. Plus he was my invincible older brother, the master of every situation. The work in this exhibit revealed, painfully, that that probably was not the case. I wasn’t sure I really wanted to know. It was painful.

I was reminded of it all again, today, when I opened a book called Seasons of Captivity: The Inner World of POWS. It was recommended to me by a friend, who knows I?m interested in the psychology of place. But what really struck me, even just in the introduction, was that I just couldn’t stop thinking about Ted. Here’s one quote that did me in:

“This was the first time we got out, without our blindfolds, from the courtyard. An interesting thing happened: Suddenly I discovered the horizon. Out there, on the edge of the desert, lay the infinite horizon. I felt dizzy. All these years I had seen nothing beyond the eighteen meters of our room and courtyard; only the birds up in the sky.”

It reminded me of the way my brother, on the few times he came out in the sterile space suit that allowed him to leave his hospital room, would stand and stare up at the trees. He loved, he said, to look up at the trees. Now I can appreciate better how wonderous that must have been for him. But it’s a painful realization. Imagine it being a novelty, a luxury, even, to look up and see the branches of a tree outlined against the sky.

Elizabeth DeVita-Raeburn is the author of The Empty Room: Surviving Sibling Loss, a memoir and journalistic exploration of sibling loss. Her brother, Ted, suffered from a rare immune deficiency disorder and spent 8 years in an isolation room behind a plastic curtain before he died. He was one of two boys upon whom the movie “The Boy in the Plastic Bubble” was based. To learn more about Elizabeth and her work go to: www.devitaraeburn.com or visit her blog: www.tedishere.blogspot.com

Tags: grief, hope, signs and connections