Apr 19, 2012 0 Share

A Leaving-Normal Life

Surreal image of path leading to tree in the sky.

“That's very unusual,” she said, glancing sideways at me. “Most adult siblings aren't really involved in their autistic siblings' care, or don't want to be. They want their own lives, you know?” 

I nodded. I understood and I didn't understand. I was on my way to meet the members of a nonprofit for an interview, and the staffer who picked me up had engaged me in conversation about my experience as a sister to a young adult with autism. I'd shared how Willie was doing, and that my parents and I were discussing how to proceed with Willie's care. (Of course, my parents make the decisions, but I offer help and encouragement whenever possible.) 

It seems the most natural thing in the world that I be involved in those decisions, even at a distance. Be it picking up medications or staying with Willie for an afternoon, I've always had a desire to do what I can to help out (that is, except for the periods in which Willie's behavioral struggles have left me feeling angry and distant from him). Perhaps it's because I'm the oldest; perhaps it's because I can see the need for assistance so clearly; perhaps it's just because I love him. Whatever the reason, I can't not be involved. 

Later in the day, another staffer expressed similar views, saying that many siblings have already spent a large portion of their lives making accommodation for their special needs siblings, that they've already “paid the price,” as it were. Again, I nodded. I understood, and I didn't understand. The idea that I will likely bear greater responsibility for Willie's care in the future is a daunting prospect at times. And yes, there was a time when I'd have said that being Willie's sibling came with too high a price. (There are times when I feel that way still.) 

And yet whenever I feel like I can't afford to witness another meltdown, I remember a wonderful passage from Anne Lamott's novel “Blue Shoe”:  “She even thanked God for giving her such a difficult [family member], because she believed that while it had been nearly life-threatening to survive [the relationship], the price she and [her brother] had paid was exactly what it cost to become who they were.” 

Strangely enough, the conversations at the nonprofit mirrored one I'd had the previous week. I'd met with a potential copywriting client, a vivacious woman with two daughters. The younger of the girls was at the top of her high school class, bound for a top-notch college on an athletic scholarship. The older daughter was living at a school for individuals with special needs, as she needed constant caregiving. The mother spoke candidly about how much her younger daughter resented her older sister. 

My heart ached for their family. I remembered all too well the feeling that Willie shouldn't live with us, that he'd done enough damage to our house, our bodies, our lives. And I realized that my relationship with Willie could have gone down a different road. I could have chosen distance resentment. Instead, I chose to be present to the grief and to the joy of being his sister. Even at a distance, I chose not to remove myself from the life of my family. 

What helped me most in making that choice was, paradoxically, to be apart from Willie for a time. In moving to L'Arche—to a life of giving and receiving care—I gained the ability to respond calmly to challenging situations. These moments helped me to stop taking Willie's behavior so personally. I came to see Willie's aggression not as a personal attack, but as a cry for help. Caring for someone who wasn't my brother taught me about how to love and accept Willie as he is, not as I think he should be. 

And, thanks to that experience, when I think of the staffer's comment—They want their own lives, you know?—I can say that yes, I do want my own life. That is, an unpredictable, leaving-normal life, one that will always include Willie.