Stephen Policoff's "A Ribbon For Your Hair"

not for the faint of heart

It would be impossible for me to be objective about the new memoir from the novelist Stephen Policoff, given that he was my father’s closest friend and is beloved by my family, and that I know and knew the main characters in his book - Policoff, his wife Kate, their adopted daughter Anna, and Anna’s little sister Jane. (For reasons of deep and inscrutable family history, my siblings and I refer to Stephen as Flip.) It wouldn’t exactly be easy to be perfectly neutral even if I didn’t know and love the Policoffs, though, as the book I’m reviewing today is a true story of unbearable loss. Policoff has written three novels, including 2022’s Dangerous Blues, a book I really enjoyed and reviewed positively here. A Ribbon For Your Hair: Loss, More Loss, and How We (Sort of) Went On is a memoir, and a very hard one to read. Because it’s the true story of Policoff losing his wife very quickly while watching his child die slowly.

Policoff, a novelist and writing instructor at NYU, and his wife Kate, who was an executive at an electronics company, always struck me as a classic New York City couple. (In fact, together they resembled Paul Reiser and Helen Hunt from the 90s sitcom Mad About You.) When I was young and I thought about being a cool adult in New York, I always thought about them, living in the Upper West Side and then the Village, doing chic New York City things. (If you’re wondering “Were they obscenely wealthy?,” I’d just say that this was the 1980s and 1990s, when the Upper West Side was somewhat affordable, and that Policoff has the advantage of being able to live in NYU faculty housing.) A Ribbon For Your Hair tells the story of how Flip and Kate traveled to China in 1995 to adopt a daughter, Anna. He and Kate desperately wanted to raise children and Anna needed parents. (Remember friends: adoption is good.) When they arrived they found her in an orphanage, suffering from a scary respiratory infection. They nursed her back to health and came home to Manhattan, to the delight of many. I still remember meeting Anna a month or two after she arrived home, when I was 14, and I also remember Flip and Kate’s joy. Then my father died a year or so later, and though they came to my sister’s wedding and we saw them occasionally, my siblings and I fell out of touch with the family the way anyone does after the death of the person that had connected them, especially someone like me who was young and wounded and desperate to escape his stepmother.

At first, Anna gave her parents no reason to believe she was anything other than a happy, healthy baby, though she struggled to speak and had some coordination issues. But then, she had been born in China and thus a little developmental delay in speaking was to be expected, and maybe she was just a bit clumsy? Eventually, however, health problems began to assert themselves in ways Stephen and Kate couldn’t ignore. Anna struggled to walk, was perpetually uncoordinated, and exhibited strange difficulties with moving her eyes up and down. Then, at four years old, she casually rolled off of a bed and onto the floor, falling a matter of inches. What should have been the kind of event that happens to young children every day led to a rush to the emergency room. The subsequent discovery of an intercranial hemorrhage, a brain bleed, and an emergency craniotomy presented a medical mystery. After an agonizing search for a cause to Anna’s myriad unusual symptoms, her parents received an agonizing diagnosis in turn: Anna had Niemann-Pick type C disease, or NPC.

NPC is a rare genetic disease, a lysosomal disorder like Tay-Sachs, where the body’s cells lose the ability to properly move cholesterol and fats around inside themselves, causing these substances to build up to harmful levels. This is especially damaging to brain cells, which slowly break down over time, leading to problems with balance, movement, seizures, memory loss, and difficulty controlling eye movements. The latter, supranuclear gaze palsy, prevents those who suffer from it from easily looking up or down, and in fact the specificity of that symptom was one of the clues that led to the genetic tests that revealed Anna’s particular disorder. The disease is inevitably fatal, usually causing death by the teenage years, though some people are affected earlier or later in life. Even now, eleven years after Anna’s death, NPC has no cure and in fact few medications that even meaningfully ameliorate it. What follows is years of Anna slowly growing more and more disabled, losing her ability to walk and taking to a walker and wheelchair, then the ability to stand in the shower unassisted, eventually curtailing her limited ability to speak. Anna at one point is enrolled in a clinical trial for a promising experimental drug, but it proves to be ineffective for Anna and in general. (As Policoff writes, “Promising is a very frustrating word when your child is dying.”). It’s a brutal thing to read, a kind of trudge through the long slow death of a beloved child, watching her gradually succumb to a cavalcade of symptoms in a state of maddening powerlessness.

And then things get worse. In December of 2011, Kate is diagnosed with lung cancer, which has spread to her bones. Yes, she had been a smoker at one point in her life - as Policoff writes, “Lung cancer is among the few illnesses where people feel free to blame the ill person” - but had quit many years earlier. (As the child of a mother who died of brain cancer and a father who died of liver cancer, I have long been acutely aware of the public’s perceptions of act-of-God cancers and “deserved” cancers.) Regardless of her quitting, cancer came nonetheless, and by the time it was discovered her condition was very advanced. As usual, dying of cancer comes with complications. The Policoffs deal with overconfident doctors; Kate has surgeries; she gets visits from ominous palliative care specialists; she has a stroke. Throughout it all, Policoff struggles to take care of Anna and to explain what’s happening to their young daughter Jane, also a Chinese adoptee. Kate dies in March, four months after her diagnosis, leaving behind Policoff and two motherless daughters, one of whom is very sick. And then Anna too slowly succumbs to her own disease, growing more and more debilitated. She loses the ability to eat conventionally, her movements becoming so slow that at one point she falls asleep during dinner; she takes vast handful of pills that don’t work; she labors to grasp objects. Finally, recurring bouts of punishing pneumonia force Stephen and Jane to make the decision to take Anna off the respirator and let her go. From there, he has to find a way to (as the subtitle says) sort of go on.

One of my biggest rules for book reviews is always “Not too much plot summary!,” and my instincts are ringing in my brain that I’ve already done too much. I also fear that I’ve been abrupt in the summarizing. But I’ve struggled finding a way to relate this book to you without telling you about its twin poles of tragedy. It’s not like these are spoilers - Policoff tells you what’s coming on the very first page. If I’ve shared fewer details about Anna’s death, it’s only because that section of the book, after Kate’s death but before the loss of Anna, is its most poignant and yet least sentimental section. That’s the part about a single father struggling to keep his sick daughter alive and his healthy daughter safe. It’s a sad story, a New York City story.

The book is very straightforward in its conventions as a memoir, unadorned and prosaic, a bit unexpected given that Policoff’s novels are elliptical and filled with various hauntings. Here, though, it’s clear that he wanted to let the story tell itself. There is a self-deprecating, put-upon, perpetually-bemused character to Policoff’s narration in this book that I find very true to life; part of what makes the whole thing work is that the tragedy is surrounded by so many mundane details, the minor indignities, the various petty affronts that seem especially random and unfair in light of the bigger tragedies. There are elements of this book that play out like a Seinfeld episode, the various absurdities of life and dying. For example, for very complex (and very NYC) reasons of access, proximity, and disability law, Chinese Catholic Anna ends up at a school for Orthodox Jewish children, which amuses her father, a secular Jew with a particular hatred of Succoth. Without these various details and amusements, the book would just be grim, but their addition makes the A Ribbon For Your Hair a collection of keen, sad, slightly off-kilter observations. At one point Policoff writes “Gloom is my default setting,” but while I know that streak in him very well, I don’t think this is really true. There’s too much yearning in the book, too much dark humor, and too much of a characteristic attempt to keep finding some thread to follow through all the sadness. This book is mournful but not bleak.

Not that there isn’t reason for deep sadness and great anger. Here’s a little extra dash of unhappiness to really make you mad: false allegations of child abuse. Because the fall the Policoffs described should not have resulted in a serious head injury like the kind Anna suffered, they were accused of having harmed her when she arrived at the hospital. The doctors kept insisting that she could not have injured herself that way. The hospital kept pressing the case, up until the point that a geneticist gave Anna her diagnosis. (Among its many tangled symptoms, NPC can cause osteoporosis, a condition that causes brittle bones, which likely explains why Anna’s skull suffered such an injury from such a minor impact.) It’s a pretty cruel fate to be cleared of child abuse allegations only thanks to the knowledge that your child has a fatal illness. And I’m afraid that this particular indignity didn’t end there; because her disorder caused mobility problems that led to falls and seizures, Anna frequently had bruises and other signs of physical trauma, which led to several allegations of child abuse by complete strangers on the street. It’s maddening just to think about. Those emotions are given a full accounting, but Policoff always turns us back towards the bigger picture, and in so doing sketches out his grief as he bobs along in a life that’s filled with sadness but also includes his daughter Jane, who needs him and helps him find the closest thing to balance that he can muster.

Which is important, because what I like best about this book is its unsettled, ambivalent attitude towards recovery, towards moving on. As the subtitle implies, Policoff keeps going, but only sort of. There is no big summative wisdom in this book, no moral at the end that takes everything that happened and (to pick a phrase) wraps it up in a bow. Policoff is still going, but he’s not particularly happy about it, and this too is true to life. In my experience mourning, even the healthy kind, is not a matter of satisfying conclusions, of finding the silver cloud and being able to laugh again and learning some great lesson…. That’s what we would like grieving to be. The real thing is grubby and unsatisfying. The best part of this book is its understanding that mourning is, fundamentally, a type of confusion. We mourn in a state of bafflement. Grief has a way of befuddling us, which is inconvenient, given that we want our grief-stricken moments to mean something. And of course they do. But they mean something within the tangle of our petty misunderstandings, our grasping, our fundamental ridiculousness. And we sort of go on. I appreciate a book that’s honest about that, that there’s no greater meaning out there, beyond our decision to love each other. Flip writes about feeling like he had become “unstuck in time,” after Kate’s death, like Billy Pilgrim from Slaughterhouse-Five - floating, directionless, driven by the waves, but still going. I know how he feels.

The chapter about Anna’s death is titled “Mother and Child Reunion.” Doesn’t that just break your heart?