you don’t know how it is
“So, how are you doing?”
“You know how it is,” I say, standing on the front porch, squenching my bare toes against the rough concrete, six feet away from two friends who, like sisters, have loved me through years of scars and laughter. I have lines etched into my face from both the joy and the pain. I have to draw my eyes back up, pull them away from the rough bumps under my feet, and silently I wonder why it is that I look away when I speak. I wonder if being an autism mom has robbed me of the ability to talk and make eye contact at the same time, if I’ve learned behaviors from my children as surely as they have from me.
My friends have come to check on me, and I want to give them the real answer to their question. I struggle: I learned a long time ago that most people don’t want to know the real answer. But they do, I tell myself. They do.
Glancing toward the roses I need to deadhead, the reedy stems still proudly holding up the withered remains of old blooms, at first I only wince.
My friend, she smiles, tucking sunny strands of hair behind one ear. “Well, I brought you a pick-me-up,” she says, holding out a sugar cookie sealed in cellophane, explaining that she ordered them for our whole group of friends. I notice the perfect lettering, the artistry in the sugar frosting, imagining the sweet taste of friendship on my tongue.
Thanking her for the gift, I search for the words to answer their question.
How am I doing? The easy answer isn’t the real answer.
The truth, that I am tired, always tired, feels tired. I don’t want to say it. Instead I tell them the time with my kids at home has been wonderful–so wonderful, I emphasize—and also a challenge. I don’t tell them that somehow, that word challenge feels too neat. Instead I talk about my intentional efforts to work on life skills and independence with Riley and Adam this summer. I flick my eyes toward cobwebs clouding the corners of the chairs, and then, deliberately, I draw my eyes back.
I struggle: How can I, in a few moments, put into words how we wrestle through sensory fear while learning to cook? Riley refuses to touch raw meat; Adam worries about opening the oven and peeling potatoes. How do I summarize the madness of rituals and repetition, the rigidity, the echolalia, the schedules, the checklists that punctuate the afternoon? How do I tell them in a few words that every step takes weeks, that not trying would be so much easier? How do I express fierce love and deep joy while at the same time admitting that I feel like I’m slowly losing my mind? How do I talk about what it’s like to want my kids to sleep in, and yet, if they do, to worry and worry and worry about crashing blood sugars and unseen, unknown seizures?
I want to tell my friends that sometimes I don’t know I’m stressed until my flight response surprises me, until I finally recognize and label the dread knotting up my stomach. It shocks me, the sudden urge to run away. I want to tell the truth, that stress squeezes my body like a vise, that it literally makes me sore and, eventually, sick. I want to lament that after all this time, I still haven’t figured out how to get enough rest, that I still hate having to admit that I’m drained, having to draw thick boundaries around times of refreshing. I want to admit that I despise my own weaknesses, and that in the next breath I thank God for them because they make me cling to Him. I want to talk about those quiet waters, how God leads me to pray, breathe, be still. I want to say I know goodness and mercy, that I will know it all my life.
I want to be honest with my friends, especially these friends, without being overly dramatic. I want to tell the truth while acknowledging joy. I want to say that I know it could be harder; that it is so much harder for someone else. I want them to know the whole truth, but I’d prefer not to take up time talking about myself.
The real answer is complicated, and here we stand in the thick of the afternoon, and I look beyond the porch to the dappled shade, where the leaves of my favorite tree cast a shadowy bower over the grass. My friends listen, patient. My explanation barely touches on the truth, and already I feel as though I’m making too much of things. I squench my toes against the concrete and finally shrug. “You know how it is,” I say, staunching the mad rush of words, trying to save them the carrying.
Slowly, one of my friends shakes her head. “No,” she says softly, and I know she means, no, I don’t know what it’s like.
I stand silent and blinking, a little stunned. Of course, she’s right: she doesn’t know, and up till now, I’ve not actually told her. But I can’t remember, in all this time, anyone ever admitting such a thing. Why don’t our conversations usually begin with that acknowledgement? I don’t know what it’s like to be you. Most of us know the old saying, about how you can’t judge another person’s life unless you walk a mile in their shoes. We know intuitively that even if the details of our lives sound similar–and many times, they don’t, our experiences would be different. We know this, and yet for some reason, we often think it helpful to meet another person’s pain by acting as though we know exactly. We nod; we give examples of our own loosely related experiences. I used to take a similar approach, thinking I was talking both of us out of our loneliness. But now sometimes I wonder, if it’s all the same to you and me, why it is that I struggle so much.
All at once I want to hug my friend, have to remind myself to stay six feet away, to keep my arms to myself. Finally, I let my gaze rest on her face and I grin, wondering how the world might heal from this one admission and the heart to hear:
I don’t know how it is for you. But I’m listening.
