Anne: March 16, 2016. I am sitting at the bedside of my three-month old granddaughter. Jules was admitted to The Children’s Hospital of Philadelphia, a week ago, with bronchiolitis. Since then, we’ve been in a cascade of disaster and despair: she’s put on oxygen, and moved to the ICU; diagnosed with two viruses—RSV and Rhino. The next day: a breathing tube through her mouth, a feeding tube through her nose, a central line into her neck, a catheter threaded through her urethra. She’s on some wonderful, terrible sedatives: midazolam and fentanyl (a friend tells me Michael Jackson died from this). There’s a secondary diagnosis of pneumonia, then septic shock.
I try breathing with her.
I can’t.
I cry. Pray. Try, again, to breathe. Sit helpless in a darkened room, watching this child, whom I love so much—unbearably, love more. She’s so still, so near to slipping away. I feel myself in another universe, one where time, too, is still. What is going on outside doesn’t matter. And what is going on outside is horrific: bombings at the Brussels airport and subway station.
Much of the medical lingo swirling around my head is indecipherable. Don’t want to understand it. Can’t bear not to.
Turns out, this is an exceptional site for writing. Where there is no future. Where nothing matters but what I can do nothing about.
You offer to visit, but are not allowed up here. It’s respiratory season, especially harsh in Philadelphia this spring. Each week, you come as far as you can: to the hospital lobby. We talk there about our writing: what you’ve drafted and I’ve now read; what I’ve drafted and you’re responding to. No escape from the tubes and monitors on the fifth floor, but extension, elaboration.
Another monitor, another lifeline. This is what friendship feels like.
After a week on the respirator, the doctors begin decreasing Jules’s sedation, hoping to encourage her to start breathing more on her own. The switchover happens much too quickly; they increase her medication again, try a step-down drug—dexmedetomidine. When they scale back again, Jules goes into severe withdrawal. This is (I hope) the worst day of my life, holding my granddaughter, who has fever, chills, diarrhea, twitching, shaking, an exaggerated startle response…it’s a horror.
The symptoms of withdrawal are milder the next day, the day following…the central line comes out; we “graduate” to the regular floor. Jules is now getting morphine and ativan, as well as some of her formula, through a feeding tube. There’s debate about how slowly to wean her from the last round of drugs; a balancing act.
I’m writing less now: Jules is more awake, sometimes fretful. The medical care is less intensive; more is asked of me.
You come again. We talk writing, re-writing, caretaking. Befriending.
Jody: You are there, at the hospital: deeply, attentively, constantly.
We sit at converging angles on couches in the lobby of CHOP, saturated in afternoon light and cafeteria smells. Speak of diagnoses and medications, of our grown children and other things too until our laptops flip open: This hard chapter on befriending: what is too difficult or potentially hurtful to say, what risks might we take? What to say about the tangle of friendship, politics, working for change in the college and in related spaces of prison, city schools, “the environment”? And other chapters: how are we each situated in relation to “disability,” to learning, to the overall themes of this book? How to describe Bryn Mawr in terms of the strong draw of a women’s college—the powerful sense of what is possible intellectually, imaginatively—for certain women in particular times? Drew Faust writes about this, you tell me; raised like you in western Virginia: rural, land-owning, Christian. A Jew from a recently middle-class family of immigrant, urban roots: this stretches me.
Then, always, you head back up into the sprawl of this hospital; I wander out into rain, dazzling sun, surprising March warmth, onto the crowded bus that takes me down South Street.
Anne: March 26. Jules goes home. The calculations: 18 days in the hospital, 6 rooms, 10 roommates, 8 tubes, 4 courses of antibiotics, uncountable medical professionals and procedures—not to mention at least 45 cafeteria meals.
I care for her in the mornings. My afternoon and evenings become again my own.
What I take home with me are the dreams.
Jules has a huge growth on her forehead—a luminescent ball, which looks bizarre, though the doctors assure us that it is benign. The next night there is a contest to measure either her intake of milk or output of urine; my cousin and her husband (a four-star general, winner of contests) get this right; they are ½-an-ounce closer than me. This morning I dream that the hospital is located on the streets of Brooklyn. I am sitting in a car with Jules, when I see three white-coated men coming down the street—these must be the doctors on rounds. I jump out with the baby, hoping to get their attention, thinking that there must be a better way to manage all this. And somehow I lose her in the crowd…
It is such a relief to wake up.
When I sleep again, all my children and grandchildren have fevers; they are all in the same hospital room. My husband Jeff and I are doing the caretaking; it seems pretty calm. In another dream—one of those early morning awful ones—there’s a tsunami: I stand, with someone else, atop a cliff, looking down at thousands of bodies on the beach and in the ocean.
I dream that Jeff and I go to fetch Julia from the hospital. They won’t let us take her, because, as grandparents, we don’t have the right “certification.” When we walk into the lobby, we find my parents sitting there, both in wheelchairs. I think, How can I manage them and the baby?
And then this: My friend Kristin Lindgren—a disability studies scholar who knows deeply the emotional ups and downs, the moving forward and backward of extended hospital stays, and who has accompanied me, in waking life, through this latest crisis—has missed a plane flight. Wasn’t she supposed to travel with us? Or come visit us? I am outside with others, working in Jeff’s orchard. We look up to see a very large plane, very close up, heading down: it is in flames, clearly going to crash. I am afraid, at first, that it is going to hit us. It doesn’t.
But I know that Kristin is in that plane.
The literal dreams are easier to assimilate than the symbolic ones—that huge airplane, that tsunami.
As my unconscious continues to process the past few weeks, I try to write, again…
that this book is a collaborative project, of two experienced teachers, advocating for a form of sustainable pedagogy that flourishes amid diversity and disequilibrium… .
Wondering: what happens to this argument, when the uncontrollable is not chosen, but thrust upon me this-a-way: unwanted, unasked, unawares…?
Have I reached, here, the limits of the form of exploration you and I celebrate throughout this book, come to its edges, acknowledged what I do when what is unanticipated just gets too scary? Threatened by an illness that seems genuinely dangerous my family and I turn—turn gratefully—to medical authorities.
There are risks in opening up and challenging institutionalized arrangements: disrespect, a failure to acknowledge expertise, the “tyranny of structurelessness.”Jo Freeman, “The Tyranny of Structurelessness,” talk presented at the Southern Female Rights Union, Beulah, MS, May 1970. My experiences in the hospital prod me to ask now what the horizons are of the risks we advocate elsewhere: of acknowledging—even embracing—both complexity and unpredictability.
When might a radical disruption in a space of teaching and learning feel too dangerous, too hot to handle? When might that cause you, me, colleagues, and students, to turn to the expertise of others for guidance, even salvation? And what does it mean to acknowledge that, in some instances, we ourselves are “the experts”?
What happens when a similar sense of edginess, even threat, emerges between us? There are risks that friendship can shield us from, offering companionship when times are tough. But there are also risks within friendship itself. Friends can be both vulnerable and threatening to one another. Because of what we know—and so can say, and do.
The day before Jules goes in the hospital, you send me a draft, saying that you think it’s “close.” I struggle with what you’ve written, finding it hard to enter, tripping over gaps in the argument. In a hurry, en route to other meetings on campus, I send you a long—and sharp—critique. As I mail it, I feel satisfied that I’ve met that obligation and can move on to others—but soon after, start to question: was I too hurried, not careful enough in what-and-how I wrote?
I check my e-mail several times that afternoon, worrying about how you’re reading my response. A couple of your notes seem curt. I worry some more. I don’t sleep well that night.
Jody: We have both been writing hard. Every day, or nearly. With joy, frustration, astonishment, grit, questions, questions, words, and images. On a windy afternoon over our cups of hot caffeinated froth, we talk each other through the forests of words, ideas, sometimes push hard: What are you saying here? Can you go further, deeper, so I’m really feeling it? Can you write into that explosive class, those students, that fruitful tension of love and institutional change? What are we doing with the images in this chapter?
I’m sitting on my front stoop when I get your response to my latest draft. There’s a lot, and I read quickly till the end: you say I sound like I’m recommending exactly what I’ve dismissed M. Carey Thomas for doing: valorizing the middle class, the college degree. My shoulders tighten. I know we’ll have to talk this through—and I also want to turn away from this conversation.
The next morning deep blue, gorgeous.
Anne: Almost as soon as we meet, at a coffee shop in Old City, I ask, did my note upset you? You say, Yes. This is going to be a hard discussion. I say (really anxious now): let’s start there. No, you say, let’s talk about some other things first…we find a bench down the street, in a churchyard, in the sun. You tell me of a great dance performance you went to over the weekend. I say that Jules is sick, en route to the pediatrician this morning; we talk about other family matters…
…and eventually (I think, maybe, when you feel we’ve softened the ground enough, reminded ourselves of the wide and thick net we share, a condition of critical befriending that will carry us through this rough patch…?) you say, Okay. Let’s talk about your comments on my chapter.
It’s very hard for me to hear, then, that you felt disrespected, that I wasn’t acknowledging the difficulty of what you were trying to do: writing about the beast from the belly of the beast. That my response made you—for the first time, and this is a blow for us both—not want to write.
This, too, is what friendship feels like.
You actually seem okay about this—have worked through your anger and resentment before we meet—but now I am shaken, feeling very sorry to have rocked the til-now-so-steady boat of our friendship. I apologize, and again. We talk through why I may have written you this way: not feeling good about my own writing, thinking I may have lost direction. Pushed, discouraged, unable to go “deeper” in the way, the week before, you’d asked me to. Coming to read your writing from those spaces of your critique, my discouragement. And then—always those disabling time-pressures of academiaSee Chapter Five, “Unbecoming.”—responding too quickly, wanting to get my comments to you before other obligations intervened. Not trusting the flourishing of this work “amid diversity and disequilibrium,” amid “the interconnected and unbounded” ecology of writing and living: not quite believing that, in time, you’ll find your own way through this text; that the stretched-out process of our shared reading and writing, the hammock of our friendship, the holding, the mesh will support this…and so misstepping, overreaching.
I’m still apologizing when Katie calls. She’s taking the baby to the emergency room. Can I come with her…? We get up too quickly. You fall, in your chair, off the unsteady little platform where we’ve been sitting, and land on your side. But you shrug it off, keep me company as I buy a salad, walk me to the corner, go on talking about the draft of this chapter: where it’s thick enough, where it still seems thin to you…
I know you’re talking just to keep us going. I’m grateful, though at that moment the details of what you say about my writing are too hard for me to hear, much less take in.
We miss Katie as she drives through the intersection. She’s parked on a corner where I can’t see her. I am anxious, distressed to have kept her waiting…
Over the weeks ahead, you come, again and again, to the hospital. You say that my critique turns out, after all, to be helpful. I am still sorry about what happened between us, wishing I’d taken more care. It feels like I’ve created a rift, that there is now a crack…
This, too, is what friendship feels like.
Jody: On the train platform, debrief classes, meetings with students, connections with colleagues. Or drive back down I-95 from the prison, processing: the women who didn’t show up and those who did, our students as teachers, the forever vexing questions of this work inside. Slather the mosquito netting in 100% deet oil, pull it over my bed in the whitewashed room of the Simli Center in Dalun, Ghana, then lean against the rounded stone of the rotunda to plan with partners in Alice’s project. Meet up at Good Karma with our friend and co-teacher, Joel Schlosser, discuss his writing about a book we’ve taught together, Claudia Rankine’s Citizen: as white people, who are “we” when Rankine uses “you”?
With Josh, Giovanna, Caleb, Rachel—colleagues, students, friends—we design a roundtable, “Pedagogies from Below,” delving into “diverse identities, fear and love, despair and activism,” for a largely white, highly professionalized, conference space on the environmental humanities. Debrief over barbeque and beer; ride the winding crevices of the Nez Perce, across luminous Idaho prairies. At an international gathering of feminists, join with Sue and Romarilyn on a panel about our prison work, from outside and in; slip into private receptions, discover walls alive with birds in the Old San Juan evening, ride lush, twisting roads through the rainforest outside the city.
These, too, are touch and taste of friendship: fed by shared desires and pleasures, tensions and risks; feeding a reaching out, reaching toward.