All Too Aware

It’s easy to feel jaded about Autism Awareness Month when your child is 21. It’s redundant. You’ve lived, breathed, and been consumed by autism for years, so when your special month rolls around you just feel numb. At least that’s what you tell yourself.

I’ve dodged the blue lightbulbs and puzzle pieces for a while now. I celebrate new research, but eschew the activities that accompany this special time of year. It reminds me of Christmas. Some people are gleeful when it finally arrives, others are depressed or feel pressured to enjoy it.

I’m crazy about my son just not about awareness month. I thought I would remain indifferent about all of it until recently. I gave a TED talk a few weeks ago where I took material from a play I wrote in 2008 inspired by my child, and mashed it up with material from Driving Miss Daisy. The talk addressed racism, ableism, discrimination, empathy–The Other—and I presented it with three other actors. I had to stop performing the full-length years ago because it was emotionally draining. I knew I wouldn’t have a problem with this talk however, because it was short and similar to one I gave in 2010. Save for a brief monologue at the end.

I started writing the original play when my son was seven. We were busy “fixing” him at the time, and even though I was overwhelmed and insecure I had faith he would get better and lead a healthy, independent life. But I’ve learned to manage my expectations at this point. Josh is still severe. Without the benefit of a medical breakthrough, or a miraculous stem cell operation, or extreme advances in the way I pray, he won’t experience the life I’d envisioned. It never occurred to me how prescient my writing would be. Many of my fears about his future have come to fruition. I used to joke that I needed to live to a hundred to ensure his well-being and safety. Today I am just relieved and blessed that Josh is happy and he senses how much we love him.

I typically bring that love with me when I perform. On the evening of the talk, when it was nearing its end, it was finally time for my character to recite the final monologue. I had relaxed into the piece and started breathing. I looked away from the audience like I typically do to deliver the mother’s lines. She’s pretending to whisper to her young son, trying to guess what’s in his head. Suddenly, when I was looking down and speaking to this imaginary boy, every memory of Josh and his childhood exploded in my brain. Flashes, momentary eruptions, of Josh at the pool, Josh having a rage, Josh having a seizure, Josh at his work table, Josh in the bathtub, my husband and I fighting, my daughter swinging with him, me crying with him, me lying next to him in his car bed, Josh having an EEG, a blood transfusion, a brain surgery. I could feel my throat tightening and my eyes burning. I was used to channeling my son onstage but this was different. This mother was still craving normal.

Then the monologue was over. I had to tuck myself back in. I pressed my lips together for a minute so they wouldn’t quiver. I felt my nose running. After we took our bows I stepped offstage for a moment to release the pressure.

I was tired after the conference, but sometimes exhaustion bares secrets you’d rather not admit to yourself. It hurts that it doesn’t matter what day, week, or special month it is I still have the gnawing desire for my son to hug me back when I put my arms around him. I still wish he could tell me what he was thinking. “And I dream that one day he will look me in the eyes and say, I love you.” I am not indifferent or numb. The longing will always be there, and I’m all too aware of it.

2 thoughts on “All Too Aware

  1. Peg April 30, 2018 / 10:48 pm

    Wow! Shelley, you nailed it again! Love your honesty and your writing. The play was amazing and I KNOW it brought more understanding to all issues. A beautiful thing to accomplish through your artistry.

    Like

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