Apr 17, 2014 4 Share

All Your Perfect Imperfections

The author's brother sitting in chair, smiling.
Photo by Caroline McGraw

Whenever I share stories of my family's experience with Willie's aggressive and self-injurious behavior, I'm always concerned that the accounts will seem over the top to some, that people won't be able to relate to them. But each time I present, at least one person approaches me to say that they're grateful that I didn't hold back. Why? Because they understand. Because they've lived through it, too. 

Last week, I gave the keynote speech at the TABS (Tennessee Adult Brothers and Sisters) conference. After I spoke, I met a young man who said, “Your story moved me … I could relate to almost every experience you described.” This young man's twin brother is on the spectrum, and their family has dealt with aggression and self-injury too. He told me, “Being an 18-year-old male, I don't thoroughly enjoy showing my emotions, but I was crying for the majority of your story.” He shared the things he loves about his twin: his humor, kindness, and intelligence. And he told me about the things he finds difficult to bear: “I've had three friends over to my house since I was 7 years old. I don't want to let people see the holes in our walls, or expose my twin or myself to unfair judgment.” I couldn't help but hug him and his sister; I wished I could stay and talk to them all night. 

Still reeling from the emotions of the TABS event, I caught a flight to New Jersey so that I could serve as a bridesmaid in my cousin's wedding. The transition marked a move from public advocacy (giving talks, composing posts) to quieter, less-visible advocacy (sharing supper, going on walks, just living life). For me, the everyday tasks prove most challenging. It's relatively easy to speak and write about Willie; it's harder to be patient when he plays the same Youtube video over and over again. It's tougher to sit and listen when he practices pieces on the piano rather than scrolling through my news feed. (Guilty.) It's the little sacrifices, the small, unheralded acts of love that take the most effort.  

The day after the TABS event, I danced with Willie at our cousin's wedding. He was wearing his big noise-canceling headphones to help drown out the blaring music. He'd occasionally smile, and occasionally make what I call his “fake freak out” face: his eyes open wide and shifted to the side; his mouth open, tongue falling to the left or right. It's bizarre, but I think I understand the motivation behind it: stress release. (After all, it's not so dissimilar from the face I make when I'm stressed out and no one else is looking.) 

As we danced, the DJ played John Legend's “All of Me.” It's a song about romantic love, but it's also about acceptance. It's about welcoming someone as they are without trying to change them. In short, it's about everything Willie's still teaching me. 

“You're crazy and I'm out of my mind / 'Cause all of me / Loves all of you / Love your curves and all your edges / Love your perfect imperfections …” 

Our parents are dancing nearby; when Mom is close enough, she says, “I love that line best: ‘All your perfect imperfections.'” I smile and nod, not trusting myself to speak without weeping. I love that line too, because being Willie's sister means embracing paradox and contradiction and all that I cannot fully understand. I haven't said a word, but soon I'm crying anyway. I'm crying because I'm happy and I'm sad, because Willie will always be different and I will always love him. 

The week that follows is filled with similar dualities: Willie's calm at home, but then he melts down at work. It seems like he'll be bored at his current day program forever, but then his case manager calls and mentions an exciting new day support possibility. Life with Willie is back and forth, up and down, and unpredictable as ever. But somehow, it's all right. I don't need to have all the answers. I just need to be able to dance with my brother and listen to words that I know to be true. 

Comment Options

Caryn Sullivan (not verified)

Perfect Imperfections

Caroline,I loved your column and the connection with John Legend's song, as it happens to be among my favorites. My 22-year-old, who has autism,  insisted he had to share the first dance with his older sister at her wedding, as their dad died before the wedding.  I really believe our guys want to be a part of the action but it is intensely difficult at times to participate fully.  As a mother my heart always soars when siblings express their honest and often conflicting emotions about the special guy in the family. Thanks for sharing such helpful insights.All the best to you and your family. www.carynsullivanscribe.com

Thank You

Caryn, thank you - what a wonderful comment to receive! I'm touched, and I agree - our guys do want to be a part of the action, and it's always a joy when we can facilitate that participation. All the best to you and yours as well! 

Michele (not verified)

Complete understanding

I'm not sure how many people would understand the term "embracing paradox" but I don't believe you could have said it any better. That is the core of the foundation when it comes to living with and loving someone with ASD. Love, Love, Love this column, Caroline!

Embracing Paradox

Michele, thank you so much! I'm glad to hear that the column spoke out to you and your experience. It's not easy, but it is so very worthwhile.