Precarious Life, an essay by Sarah Sentilles

This beautiful essay by Sarah Sentilles arrived today in my inbox at just the right moment. I find myself at a loss for words, and want to let her voice – and her message – speak for itself. 

Precarious Life

Sarah Sentilles

August 23, 2012

 

There’s a temptation to turn Emily’s experience with Ronan—to turn Ronan’s experience with Emily—into something abstract. Mother and child. Pieta. Abstraction is more manageable somehow, packaged, known, removed.

I can’t imagine what you’re going through, people say to Emily.

Yes, you can, she says. You just don’t want to.

But Emily and Ronan’s daily life is anything but abstract. It’s concrete. Sleeping. Feeding. Choking. Shaking. Bathing. Clothing. Changing. Carrying. Breathing. Drooling. Soothing. Syringes lined up on the coffee table filled with liquid medicine flavored mint, flavored grape, its consistency too thin, so hard for him to swallow.

Ronan can’t see and he can’t move very much, but he responds to Emily’s voice, orients his body, his eyes, to the sound of it. Do you think he knows who I am? she asks.

Yes, I say.

Mama.

We took Ronan with us in his stroller wherever we went, his head held up by stuffed animals—lion, monkey, bunny, elephant—his guardians, his guides, his spirit animals. 

People looked at him, stared at him, trying to figure out what was wrong, and then they looked away.

Lucky guy, a waiter said when he noticed Ronan was asleep, yet another reminder Emily’s life is not the way others assume it is.

 

I teach college students—many of them artists—and my favorite book to teach these days is Judith Butler’s Precarious Life: The Powers of Mourning and Violence. Butler takes two things that are usually understood as isolating—grief and the body—and develops an ethical system based on connection and responsibility. Our bodies have public dimensions, Butler argues. “The skin and the flesh expose us to the gaze of others, but also to touch, and to violence, and bodies put us at risk of becoming the agency and instrument of all these as well.” My body, she writes, both is and is not mine. Each of us is implicated in lives that are not our own.[1]

Nowhere is this clearer than in mourning. When someone you love dies, Butler writes, you will never be the same, and it is this experience—this recognition that when you are lost something of me is lost, too—that shows our essential connection to one another. Grieving reveals who we are, Butler argues, reveals what it means to be human; grieving exposes our fundamental need for and dependence on others. Our ties to others constitute what we are. Others compose us; there is no “I” apart from “you.” If I lose you, I not only mourn the loss of you, but I become inscrutable to myself. Butler asks, “Who am I without you?”[2]

“Let’s face it,” she writes, “We’re undone by each other. And if we’re not, we’re missing something.”[3]

Emily’s grief is public grief. When Ronan was diagnosed, Emily could have turned away from the world, closed her life down, stayed inside, but she has chosen to do the opposite. The door to her home is left open. If you were to walk into her house today, she would hand you her son.

This is Ronan. Hold him.

I spent most of my time in Emily’s house holding Ronan. His legs straddling my stomach, his chest on my chest, his face turned to one side, his head just under my chin, the weight of him, the weight of someone dying—which is all of our weight.

Love is all you need, Ronan’s t-shirt said.

His little perfect beautiful body is heavy, and being with him, holding him, felt nothing like what I’d imagined. When I thought about visiting Emily and Ronan, I imagined I’d cry the whole time. I imagined it would be dramatic. Frightening. Strange. But it was peaceful. Quiet. The sound of Ronan’s breathing filling up the room. The sound of bottles being washed, of prunes being mashed, of the dishwasher being emptied. The sound of Emily talking to her son.

Hello, my beautiful boy.

There is no question about what will come next, though how and when remains a mystery. It will come. And there is nothing anyone can do to stop it.

What kind of community will we be for Emily and Rick and Ronan? How will we hold them? How will we let ourselves be undone?

Emily has made her grief public, but I know she often feels alone. Her book about Ronan is called The Still Point of the Turning World, and “still point” is how Emily sometimes describes her life—as if she is one place, stopped, while most of us circle around her, going on with our lives, our ordinariness.

I talked to Ronan while I held him on Emily’s couch, my back supported by pillows, a mockup of the cover of her new book propped up next to me, Ronan’s weight rooting me to the earth. You’re okay, I said when his limbs tightened, when his arms shook, when he startled. I don’t know if Ronan could hear me, and if he could hear me, I don’t know if he could understand what I said, but I can see now I wasn’t only talking to him. I was talking to me. I was talking to Emily. Oh, sweet baby. I’m here. I’m here. I’m here.

 

 


[1] {Butler, 2004, #201@26-28}

[2] {Butler, 2004, #201@22}

[3] {Butler, 2004, #201@23}

9 responses to “Precarious Life, an essay by Sarah Sentilles

  1. I am so grateful to have read this. I am so grateful, Emily, that you have opened your home. All I can say is thank you, and I will do what I can to hold you three, especially.

  2. Very true, all of it. Emily. I wish I had some words of comfort. I have none. We think of you and little Ronan every day. Please give him a kiss for us.

  3. I am in your field of gravity, little family. You are all often in my thoughts.
    The beautiful and the inscrutable balancing within you.

  4. Jennifer from Oregon

    I am stunned each time I read this blog by the eloquent writing, the depth of feeling, the searing and heartbreaking honesty. I come back again and again, read and reread. I don’t know you or your sweet boy or your husband, but I am a mother and I know your love for your child. You are right..I can imagine what you are going through and it brings me to my knees. You are going through every parents worst nightmare yet you are somehow giving to others by sharing. I carry thoughts of your pain and love and the heart wrenching beauty of Rowan in my heart each day.

  5. i can only echo was jennifer above wrote. i keep coming here again and again. i don’t know you, but i think about you, your husband and your beautiful, sweet ronan every day. i think of his beautiful face and i think about what you are going through and my heart breaks into a million pieces.

  6. Absolutely gorgeous. I am reminded of the times I’ve spent with Emily, Rick and Ronan and so grateful to have had those times. So grateful for the times I’ve gotten to hold Ronan’s full self, to touch his perfect face and to be present with him, with his parents, with all of us sharing the human condition as it unfolds in these three lives. Sending buckets full of love…

  7. This is so beautiful. And true. I am crying. Thank you.

  8. This essay, much like Emily’s writings, is such a comfort and a shock to me, all at once–that someone understandfs these feelings so completely. To be the mother of a terminally ill child is to endure constant looking at and looking away, even by your closest friends. I don’t blame them for turning from us. But, it is lonely. Sarah is so obvoiusly connected to Emily that she finds it impossible to look away, but instead bears witness to her, Rick and Ronan. What an amazing act of love.

  9. Betty Shusterman

    Dear Emily,
    Our beautiful daughter Jodi Allison died from Tay-Sacks in June,1987 at the age of 5. There isn’t a day that goes by that we dont think of her. They say that Tay-Sacks children are the most beautiful in the world. You just have to look at pictures of Ronan and Jodi to know that is true. What a joy to have had them in our lives even for so short a time.
    Betty Shusterman

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