A mother, mother-in-law, aunt, grandmother, and great-grandmother dies, and we gather. We walk through Ruby’s house, running our hands along the dresser tops and counters and armchairs that witnessed her raising five children, cooking thousands of meals, going over the books for the business she built with her husband, making and receiving phone calls from the family and friends who gave her life its heft and texture. They witnessed also the far too many calls Ruby made or received sharing the worst kind of news, about a brother, a father, two sisters, a husband, and (God help us) two sons. And witnessed too her world narrowing to one favorite recliner in the TV room, her door opening to a parade of hired help who allowed her to stay as long as she could. Which was simply not long enough for her. In her last months, lived in a nursing home, she would call people to ask that they tell Jim—her late husband, my father-in-law—to please come get her. She wanted to go home.
She is home now, with Jim, and the others. And perhaps, as her minister put it so beautifully in her funeral homily, now Ruby can finally ask—and receive answers to—the questions she did not dare voice when she was alive, all of them starting with one word: “Why?”
These are the questions that plague us all, aren’t they? At least, if we are lucky enough to have people to love. Because those people get hurt and sick, they die when they shouldn’t.
My work has taken a back seat this past week, as being with our family (not to mention managing the hundreds of details that need attention when a family of five takes a last-minute 1,200-mile round trip excursion) has taken center stage. This morning, I eased myself back into my regular routine by reading an article by Stanley Hauerwas, the renowned Christian ethicist at Duke Divinity School whose endorsement of my book remains a high point (very, very high point) of my publishing journey thus far.
Hauerwas wrote an essay for an Australian news site reflecting on disability, particularly on the conundrum posed by the word “disability” itself. Too often, the word allows others to dismiss, to belittle, to overlook. Yet it also opens the door to help, support, and services that can allow people with all manner of physical, intellectual, and/or psychological limitations to survive and thrive.
I came upon this article on the Australian Broadcasting Corporation’s Religion and Ethics portal because Hauerwas included my book, my family’s story, among those he used to illustrate the tension involved in labeling disabilities—and in living with them. He asks, “How are we to rightly regard [people with disabilities] as precious creatures of God and yet wish they might not suffer from their disability?”
This remains the central tension in my own grappling with our family’s life with disability. How is it possible that I treasure my beautiful daughter just as she is, because I do, and yet also wish that she had strong bones? How is is possible that I treasure my own life, because I do, and yet also know without a doubt that, were I to have the chance to live life without these fragile bones, crooked spine, grating joints, I would gladly take it?
Hauerwas doesn’t fully unravel this tension in his essay. But he does say emphatically that we cannot begin to make sense of it without stories, stories like mine, which he holds up along with several others as examples. Here he draws on philosopher Eleonore Stump’s work on narrative and suffering:
Stump begins her account of narrative by quoting Isak Dinesen that, “All sorrows can be borne if you … tell a story about them.” Stump confesses she is not sure Dinesen’s claim is true, but Stump is sure that reflection on suffering is better with the help of a story…Crucial to Stump’s argument is the contention that there are things to be known by way of a narrative that cannot be known by more analytical modes of reasoning.
Sider is right to wish that Martin was not autistic. Dollar was right to wish her daughter had not been born with brittle bone disease. Dollar was right to rejoice that her other children did not suffer from her disease.
But let us rejoice that Sider and Martin have one another, that the Dollar family exists, for without stories like theirs we would not know what love looks like.
Well. It is hard to put into words how such an affirmation of my family’s story makes me feel, especially now, in the aftermath of burying my husband’s mother. It feels good, like someone gets it—what I was trying to do. (That the “someone” happens to be a renowned theologian is icing on the cake.) It feels hard, because Hauerwas’s essay articulates questions for which we do not have clear answers. It makes my heart hurt, because he is affirming my family as a blessing just as my family has begun life without one of its members.
But mostly it feels like Hauerwas has articulated something that is not only true of the story I tell in the book, but true of our family’s entire story (and all family stories), a story that stretches back and back, encompassing Ruby’s story and so many others, and reaches toward the as-yet-untold stories of our children as they grow into adults.
Last week, we buried a mother, mother-in-law, aunt, grandmother, and great-grandmother whose life had been full, hard, long, tragic, joyful. We gathered for a funeral, and we cried some, and we watched our children giggle with their cousins; splash in the hotel pool; gape at old photos of a glamorous young grandmother, their aunts and uncles as toddlers, and a grandfather they never got to know; get a better grasp on the family tree through a keen study of grave markers at the family burial plot; and stuff themselves with sweet tea, fried chicken, coconut cake, and Cheerwine. And so, even as we mourned and retold stories of Ruby’s long life, we were creating new stories, stories that our children may one day pull out to tell their own children.
We are right to wish that Ruby was still sitting in that favorite recliner, making and receiving phone calls, planning where to go out to lunch, and fussing over whether her church committee members would make sure there were sufficient paper products on hand for a funeral lunch. We are right to wish that, in her 88 years of life, she didn’t have to know how it feels to receive the worst of news far, far more times than any one person should have to do so.
But let us rejoice she had us, we had her, and that her remaining children, children-in-law, nieces and nephews, grandchildren, and great-grandchild have one another, for without stories like hers, like ours, we would not know what love looks like.