Sep 29, 2011 0 Share

Telling Truth from Lies

Silhouette of boy and girl holding hands at sunset.

I’d like to share something I’ve not been able to get out of my mind this week. It’s from the Sibling Support Project, from a page entitled, "What Siblings Would Like Parents and Service Providers to Know":

 “…some typically-developing brothers and sisters react to their siblings' disability by setting unrealistically high expectations for themselves—and some feel that they must somehow compensate for their siblings' special needs.”

These particular lines struck me, and I had to stop reading. I sat back, feeling a sense of rueful recognition. When I read something like that, it’s as though a light turns on in a dark room of my subconscious, and I stand there saying, “Oh. Oh. I see.”

I’ve written before about this issue of compensation, of deserving, about how it relates to my brother:

“Every time I have wanted to let myself ‘shine’ in a new way, I’ve faced this haunting fear. That fear speaks to me in (barely-audible) words: ‘If you do [x, y or z], you’ll put even more distance between who you are and who your brother is. You’ll be abandoning him. You won’t be able to connect. And if you do manage to take a leap, I’ll make every step fraught with guilt, so deep-down you can’t identify it or shake it.’”

Once we as parents, caregivers or siblings have acknowledged a tendency toward perfectionism (e.g., always needing to be in control, constantly apologizing for things that aren’t our fault), we have to ask ourselves: What am I using these behaviors to hide from?

At the deepest level, the burdensome expectations aren’t about compensation. They’re about avoidance. If I trap myself into trying to please everyone … if I set unrealistic goals and take on false identities … I’m actually avoiding myself.

And I believe that the reason we do this—the reason that we avoid our true selves—is the fear that, in becoming our true selves, we’ll somehow distance ourselves irrevocably from our sibling, from the person we love. We fear that coming into ourselves may somehow ruin our connection.

It’s difficult to admit, but this fear has held me back and taken me prisoner. But the beautiful, freeing thing is this: It isn’t true.

What’s true is how I feel when I watch my brother play the piano, and how proud I am when he makes music. What’s true is that, just as I celebrate his accomplishments and victories, he, in his own subtle way, celebrates mine. Because I’m his sister, and he loves me.

I remember the first time my brother came to visit me at the home where I was living and working as a direct-care assistant for adults with intellectual disabilities. It was a summer evening, and all of my housemates were gathered at the supper table to welcome my family.

Prior to my family’s arrival, I’d imagined all kinds of potentially difficult scenarios. Instead, I got this: Willie sitting peacefully, enjoying the meal. One of my housemates held his hand for most of the meal, and he’d typically be averse to that kind of prolonged physical touch.

It was such a strange, wonderful supper. And, though I couldn’t have articulated it at the time, the happiness I felt at seeing my two families together helped me to be free, to see past the lies.

Instead of living from a place of compensation, I’m choosing to live from a place of interconnection. How does that work? It starts with the realization that becoming myself and loving my brother are inextricably linked.

If Willie and I had not been siblings, I probably would never have chosen to live and work with adults with disabilities. And if I hadn’t come to love others with intellectual disabilities, I might not have learned to celebrate Willie just as he is.

My path has led me away from Willie, and my path has led me back to him. And not a single step has been wasted. In walking this road, I’ve come to see that our journeys are twined. And for that, today, I give thanks.