As I face my son's inevitable death, I realize how little I once understood grief, or how to help a person in pain
A photo of the author with her son (Credit: Anne Staveley)
In 1998, while a student at Harvard Divinity School, I worked as a chaplain at the Gay, Lesbian, Bisexual and Transgender Speaker’s Bureau, also known as SpeakOut. The goal of this nonprofit was to spread tolerance by telling “coming out” stories, and I flattered myself that I understood them.
At the very least, I admired them. Sitting with those speakers onstage in a dusty school auditorium or in the overheated cafeteria of a nursing home or in a damp church basement, I watched their hands shake, felt their mouths go dry, their hearts leap — they told their stories anyway, at the risk of being laughed at, ridiculed, misunderstood, or even openly condemned. It took serious guts, and what I knew of the world then and what I understand even more deeply now is that true intellectual and emotional bravery is a quality rarely found in individuals. These speakers shared their stories because they had finally come to a place of self-acceptance, and they were willing – and felt called – to stand up and describe the journey that had landed them there. They were, in a word, badass.
But one day I encountered a story that made me realize just how much I did not know. This was the afternoon Stacy came to talk to me. At the time, Stacy was actively transitioning from male to female (Steve to Stacy). Although biologically male, she dressed as a woman, took hormones and was actively coordinating other therapies that would result in a body that reflected the gender with which she most deeply identified. Her makeup was smudged, her hot pink down jacket dusted with snow.
Someone had gotten on the bus and asked her, rudely and loudly, “What are you?” She was used to being stared at and ridiculed and called “freak” and “bitch” and “fag” and any number of insults; she was used to telling the story of her life to strangers like unrolling a scroll for them to read and discuss and judge, but she told me, “It just got to me today, you know? What am I? Why can’t I just be a person? Just a human being?”
Stacy, whom I respected a great deal, for her wit and verve, was brave and bright and going to be just fine. “People just talk,” I said casually. I was not sure what else to say.
Most of my conversations were not like this. Mostly the members of SpeakOut wanted to talk about politics, or they wanted to get into a deep theological discussion, a back and forth I relished. Sometimes people just stumbled into my office and wept. The rules of chaplaincy expressly stated that no touching was allowed, so I set my face in a stoic gaze, and murmured things like, “It’s OK to cry, just get it out. Nobody will judge you here. You are safe.”
I meant those things, but the level of comfort always felt inadequate. I’d hand the person a tissue, they’d shake my hand, thank me and leave the office. I sat there, trembling with the desire to do – what, exactly? Take away the pain, the sorrow, the suffering? Possibly, although most of the time I had no idea what they were crying about because they didn’t share the details with me; I simply tried to bear respectful witness to their emotional experience.
But that afternoon with Stacy was more intense. I smiled at her, and she smiled back, and then her smile disappeared and something remarkable happened.
Stacy made a weird, low sound, briefly covered her mouth in a gesture of what appeared to be surprise, and then dropped to her knees and held up her arms to me. She asked me to hold her, please, please, she said. I sat in my chair, unmoving, as she pleaded with me. I could write a feisty paper about Nietzsche’s theories of morality, but I couldn’t sit in a room with a truly suffering person for one second. I was mute, helpless, ridiculous. I could read her face: the desire to connect, the way it might feel, and I knew if I held her it would not be chatty or breezy as our exchange had been moments before.
Her arms were still a man’s arms, strong and muscled and reaching out for me, and I knew that the way she’d grip me would be intense, not casual. And I knew that her need was not specific to me, but to her, and it was bigger than the room, it was swelling up to feel bigger than the world. The quality of her grief, the depth of her desire and the mix of these two evident and shining in her eyes scared me too deeply. I said nothing, did nothing. Eventually she stood up and left without saying a word. I never saw her again. Or perhaps I made sure to avoid her.
I thought about this incident recently while I was sitting at my son’s bedside at 2 in the morning to put an oxygen mask on his face during one of his choking seizures. Ronan, just over 2 years old, is dying of Tay-Sachs, a progressive, neurological illness that is always fatal, and at this point he has seizures all day and all through the night. The nursery has been converted to a hospital room with a suction machine, an oxygen machine, a therapeutic bed.
All the books he’ll never read have been moved to another room; all the toys he cannot touch because he’s paralyzed have been packaged up and taken out of sight. Two Dia de los Muertos figurines remain to guard the door. Fifteen years later I understood needing to be held in the face of abject pain — the connection between desire and death — that Stacy revealed to me on that cold winter day in Boston. It was about a white-hot, unstoppable need to act with the body, as a way of staving off the reality of death. As if the body was ever any bulwark against that fact. Death=desire. Overly conscious of the first part of this primal equation, I was brimming with the second.
At first I channeled all this desire into writing a book about my son, telling my own story. I worked like a crazed animal. I had always been interested in ancient biblical stories, stories that tried to make sense of the world and humanity’s place in it, and so I reread old myths that I’d first encountered in my Hebrew Bible class – the original flood story; Gilgamesh, an early Adam, a precursor to Job, the great man in search of immortality who, in a fugue of grief after the loss of his dearest friend, stumbles around weeping and wiping his nose on his tunic and yelling at people about the unfairness of mortal life before calming down, getting it together and returning to the city, where he marries Ishtar and rules justly over his many lands. That would be me, I thought, someday – calmly getting it together – not to rule anyone or anything, obviously, but to do something. But not yet. In the meantime, I was trying to stay in the world without hating it, myself, or anyone who wasn’t Ronan.
On the day I sent the next-to-last draft to my editor, something happened, and I understood at last what Stacy had been trying to teach me. The language of the breaking mind is odd, needy, grabby, unpredictable, but it is language, and I had too much. I slept fitfully and remained agitated the next morning. By 1 p.m. I had started to sweat and shake. By 2 p.m. I wanted to claw my face off. I canceled my afternoon class at Santa Fe University of Art and Design, left my office and stopped my car on the side of the road. I pulled at the skin of my chest as if my heart and palm were magnets and I could force the one out with the other. I wanted somebody – anybody – to hold me, break me, annihilate me as if this might prove that I still existed, that I could still exist after my son died in this medieval way, that I could go on, experience some kind of rebirth after this, be a phoenix, rise up, be resurrected, the girl Lazarus. But unlike the biblical stories, in life we are never granted full resurrections. We must carry our wounds with us, accepting that by doing so someone will always be able to put their hand inside them. A doubting Thomas will always have something to touch, to probe.
My son is still alive, although he doesn’t have long to live, and I continue to wrestle with these questions. I am often a stranger to myself, and yet in the midst of this madness I feel like I’m touching the edge of an authentic way of being that’s better than I could have ever imagined. I feel conscious of that “dark animal” Sylvia Plath talks about in her poem “the Elm.” I hope everyone can discover that open space and brightness, knowing that it can also give rise to a heightened sense of terror. Stories: the only thing we’ve got, the arbiters of this human process of rocketing between hope and despair, and it’s why every person’s is vitally important. It’s why it doesn’t matter if you’re a mess, or put together, or even a success according to arbitrary standards; what matters is that you are conscious of the world around you, in all of its terrible beauty.
After that last encounter with Stacy, I stumbled home, sat on my gross mattress on the floor of a freezing room with all my big, smart, expensive books stacked against the wall and realized a gut-dropping truth: I was afraid of the intensity of her story. There was part of me I had held back, miserly and secretive and inscrutable, like some crotchety, lonely character in a Dickens novel. Stacy had given it all, and this openness, this need — had made me buckle, stumble. The vulnerability of her heart – like clear, clear water — had exposed my own, and I didn’t like what I found there: moral muck, emotional turbulence, a whole lot of lies, a need to hide. It was then that I decided to become a writer, because I’d no longer be able to hide. And I wanted so badly, from that moment on, to be real, to be seen the way Stacy had been willing to let herself be seen, and in so doing, to truly see another.
Being a mother to Ronan has taught me that to live authentically means always to balance on the lip of loss; there is no other way. It’s better to be brave the way Stacy was, to say “here I am,” and then get down and get in it, even if the person you confide in is a confused, hung-over 22-year-old woman with no real knowledge of the injustices of the world. Even if you are rejected. My inadequacies did not diminish the wonder of her big open heart.
The world can be a horrible place at times, but we don’t have to participate in this, we don’t have to harden our hearts as we’re taught and told to do, in order to survive or be sexy or attractive lovers or perfect parents or interesting people. We do not have to make ourselves into mysterious gifts, waiting to be chosen or read or understood by those who will earn us, unwrap our secrets, and then what? We can be something more authentic, and speak from a different place, a different planet. This is why I like being a writer, because what it demands is both simple and incredibly hard. To be a human being. Does anyone even know what that means anymore? Why don’t we allow for mess? Why are we so afraid of it? What do we expect from the veils we pull down over our eyes, our minds, our hearts? How can we possibly connect if we never let people see what we truly are and what it would take to make us free? Now, when I can’t fake a single emotion I don’t feel (or at least not for long), I wonder how I’ve lived this long being any other way. Maybe it’s that I haven’t really been living, and that now I am like Adam, like Eve, my feet still wet from being newly created, awkwardly learning how to walk on dry land.
Fifteen years later, I wish I could go back to that dusty, cramped room on the first floor of a brick building in Boston’s Back Bay, the smell of dough rising in the pizza parlor next door, the heater hissing behind me, the traffic on Mass. Ave. a distant hush beyond the steamy window. After Stacy told me her story and fell on her knees, arms raised up to the sky, to me — the penitent — when she asked, “What can you do for me?” and “What am I?” I, too, would get on my knees. I would quote that line from Genesis 22 when Abraham says to God — “Here I am” — only there would be no demand for a sacrifice, just a not-so-polite request for authentic, intimate connection. This time I wouldn’t fail her. I would be sober and clear-headed; I would touch her face and say, “here you are.” Without fear I would look into her eyes, straight into all the longing, that great catastrophe of grief, the manic need for escape and connection that brings with it the panic of desire and the terror of love, which is, 15 years later, like looking in a mirror at my own face, into my own eyes, and in answer to her questions I would say, “There is nothing I can do for you. But I can tell you that you are impossibly, wonderfully, beautifully, undeniably, and completely human.”
What does it mean to be human, at this time, in this country? I believe it means practicing a radical generosity and empathy, especially when it’s a struggle. You must look around in the soft darkness of your waking life, which is the partner of your dream life. You must understand that accompanying you always is your animal, primal, complicated, desire-driven, calm but desperate, brutal and brilliant self, blinking and breathing gently in the dark, waiting for you to let it into the light.