NOE: A FATHER-SON SONG OF LOVE, LIFE, SICKNESS, AND DEATH
by Phil Wolfson
North Atlantic Books, 2011
From the time I started to read this book, I wanted to write about it. I made notes all over the margins with what I hoped would be useful things to say. Now that I am writing, I feel that I will never be able to do justice to this remarkable book. I will try, in the hope that many other people will discover it and experience its gritty, deeply felt, and hard-won wisdom.
Phil Wolfson’s Noe describes the experience of a family facing the serious illness and eventual death of Noah, their sixteen-year-old son. The book is woven from a rich tapestry of voices, from the author’s journals, Noah’s chemotherapy diaries, and the convincingly channeled voice of the boy who has died: “Pay attention, you bozo … I am going to tell you how to proceed. Don’t think I haven’t been watching you mope about these last weeks since you were so careless with our journal. After all this is also my loss. It’s my story you’re supposed to be telling, not just yours…”
“Bozo” is Noah’s favorite nickname for his father, so we shouldn’t be surprised that it shows up early in the narrative. It belongs to the characteristic way these two banter and tease each other as an expression of love, breaking down the strict boundary between the parental and the child generation, while never sacrificing the father’s ability to provide care. It is the tone close friends use in order to demonstrate the unbreakable, enduring quality of their relationship, which allows anything to be said because the bond is so strong. This quality of friendship will prove to be crucially important as the story unfolds.
This wasn’t an easy book for a bereaved father to write: “The memory of losing him still ignites the most intense feeling of emptiness and longing. It took me ten years after he died to complete the chapter on the last days of his life…. Even now, writing this is complete torment.”
The book begins before the boy who will die has been born, when his parents meet at the “vast Sheep Meadow demonstration in Central Park against the Vietnam War in early 1967.” They share the radical values of the 1960s, of which this untraditional father-son bonding is one expression. They live communally, believe in changing society and challenging authority. They forge deep, strong bonds with other people, who often become their family.
I imagine it would have been very tempting for a father who has lost a beloved son to draw a nostalgic portrait of him, even though literature and nostalgia mix together about as well as oil and water. Had Wolfson given in to the temptation to create an unreal son, a boy who never existed outside the feverish insistence of his father’s story, he would have destroyed his memoir and rendered it useless. Instead he gives us a boy real to the point of exasperation, both for his family, who must endure his rages, and for the reader as well. That we come away loving and admiring this boy speaks as nothing else could for the honor of the narrative. So many potential pitfalls here. The author-father might have become self-absorbed through his own grief and loss. His narrative might have lashed out bitterly against an indifferent universe. There is none of this in Noe. Instead, we learn how emotional “knowledge that comes of the shattered heart is a wisdom based on the purest connection of all, between child and parent.” The author intends to make that bond palpable and succeeds on virtually every page.
That is probably why I found it hard to put the book down. Every time I had to leave it, to get a drink or take the puppy out, I felt as if I had stepped away from a crucial learning that had held me gripped through its emotional power and authenticity. To sustain this note over more than three hundred pages is nothing short of remarkable, a testament to authorial skill and narrative ability any writer would be happy to possess. A testament also to the ferocious honesty of the book, which does not turn aside or flinch from the most disturbing truths, as it builds a taut, suspenseful story that keeps us turning pages although we know from the beginning that Noe has died (“At birth, he seemed a bit simian, and his Jewish tribal features were exaggerated. I worried for his beauty and his nose”).
We learn about the way Noe attacks and torments his younger brother Eric, not only after the diagnosis, but also from the time a little brother entered the family and gobbled up attention: “Sibling rivalry was an annoying, destructive constant in all our lives from the moment of Eric’s birth…. A rabbit punch behind his grandparents’ turned backs would lay his brother out on the floor, crying in pain and shock.” We are invited to witness the family’s struggle, its rage and immobilizing grief, its struggle to keep Noe alive, and the sheer precariousness of its continuation. Noe’s mother, in the grip of her sorrow and despair about her son’s illness, thinks of divorce. The couple blames each other, each failing to give what the other imperatively needs. They stay together because, after all, they have a son who needs his family — he may die if he relapses from the severe treatment he has undergone. After his death the marriage falls apart. (We are told this happens to 80 percent of families with a seriously ill child.)
Human, all too human: the father, a doctor, has failed to recognize the first signs of the boy’s illness, although they should have been evident to a trained physician. On the way to Tahoe, Noe’s lip begins to bleed profusely and for no apparent reason. “How could I, a doctor, have gone on? Why didn’t I turn around and head for the hospital? How did I stay blind, deaf and dumb to my own son?” This father aims to bring us as close to truth as we can get through our vicarious participation in another’s story. No one will be spared.
By the time Noe sees a doctor and is admitted to the hospital, he is close to death. This loving father, who could not bring himself to think the unthinkable, that his son’s life is threatened, has become, along with his son, the victim of tragic denial. Once hospitalized and confined, strapped down, and punctured with needles, the twelve-year-old boy rages, will not cooperate. He exhibits the same destructive strength of will that fueled his persistent torment of his younger brother. Noah refuses treatment, screams at his parents, spits at them, drives them out of his hospital room. Eventually, he is put in four-point restraints with cuffs on hands and legs. Wolfson finds this unacceptable, but his boy has once again pulled out his IV and has threatened to do it again if they don’t leave him alone. But when they leave him alone he croons “in the most miserable fashion” for hour after hour, “interspersed with periods of awful bellowing…” The hospital staff is fed up with him, feeling hurt and abused. One day, a pediatrician running the unit on the regular doctor’s day off, charges into the room with his staff, grabs and pins down Noah, who thrashes and screams, “Fuck you, fuck you! Leave me alone!” The physician, losing control, shouts back: “You are a horrible brat … you will behave, or we will restrain you and do everything we need to do.” Wolfson sees his opportunity and seizes it. This sixties warrior is not intimidated by authority or threats of physical violence. He walks into Noah’s cubicle, confronts the doctor and controls his own rage. “He is sick and hurt, and you have no excuses. You are a physician, and he is a bewildered child and your patient. If you ever come to him with aggression, I will bar you from this room…”
The physician, no doubt shocked to find his authority questioned, threatens Wolfson physically. Wolfson moves in as Noah watches them intently while his father kicks the doctor out of his son’s room. This is the breakthrough, the son in tears, begging the father for his help and protection, the father holding him, pleading: “If you help me out by not resisting, I will be able to stop them from overpowering you. Please, let’s stop this. Let’s get our friendship back. Help us to help you live a long life.”
In this moment the friendship bond between father and son saves the boy’s life, when any kind of authority, even the most well-intentioned, would only have strengthened his resistance. Noah begins to cooperate with his treatment, and remission occurs on schedule, three months later. But his father tells us that the violent character “they had encountered [in their son] was never far below the surface.”
“The violent character they had encountered.” This is a loving and devoted father speaking of his son. Therefore when he describes the beauty with which he swims, his brown, muscular body slipping through the water, his high diving from a rock face in Kauai, his remorseless courage as he insists on life while facing death, we believe the father. Over the four years of life remaining to him, Noah emerges as a complete character, brilliant, thoughtful beyond his years, self-aware, and capable of humor and even fun while he is going through the worst of adolescent horrors, with his bald head and a metal disc protruding from his chest so that blood can be drawn without stressing his veins. One day a close friend deliberately knocks off the wig he has reluctantly begun to wear, humiliating him in front of other people. By now we love Noah, we don’t want him to die, we begin to believe that perhaps he can still be saved even though we know that he will die. The narrative takes on its full power when it makes us believe that this death might just possibly still not occur, although we know it has.
There is a climactic scene that brings the book to a close when Noah, with his last remaining energy, in horrible pain, pulls himself into a wheelchair and goes back to visit his school so that he can forgive the friends who have let him down. There could be no better ending.
It is tempting to say that the book is as much a spiritual quest as a tale of illness and death. But what do we mean by spiritual quest? The author and his family seek out therapists, well-known healers, and make use of MDMA (ecstasy) to bring about accord and enhanced communication between husband and wife. These do not come to much and it is not surprising. Wolfson is not in search of any truth but the truth of the heart. His quest is not an effort to discover meaning; his ethical values were set down firmly during the 1960s and they don’t change. There are many kinds of heartbreak and disappointment in this book: betrayed friendships, failed communes, therapists who prove not to be what they seemed, and famous men for whom their fame is everything. Nothing breaks this man, although many things break his heart open. The activist life he has led and its human richness seem to fortify his heart, making him able to endure blows that could call all meaning into question. This can’t happen to Wolfson, even as the loving father of a beloved son who is fatally ill. Meaning for him depends on human interaction: it has been driven in deep by his lifetime of activism and social responsibility; it does not fail him. This is a secular spirituality, more enduring perhaps than a trust in God, who is prone to let us down when the going gets rough and we are forced to ask of an omnipotent power how it can countenance the suffering of the innocent. Wolfson never has to ask this question; this is a source of great strength. The ability to wring meaning from tragedy is at the heart of secular spirituality. When the author demands that every event render its teaching and deliver its lesson, he offers us a hard-edged spirituality that refuses all consolation but that of human bonding, human love.
Life is the hero celebrated in this book, an experience of inherent value whose meaning is sufficient onto itself, requiring no metaphysical gloss, no transcendent striving. We experience Noah struggling heroically to fight the illness and assert his claim to life, pushing himself into breathtaking feats of physical prowess before the relapse occurs, the treatment begins again and he has to struggle back through the overwhelming exhaustion and depletion of the radiation. This is the life force speaking for itself, refusing to surrender until the last possibility of struggle has been exhausted. There is an epic quality to this fight against all odds, on the boy’s part and that of his family; it is the kind of epic that arises from ordinary life pushed to its extremes while remaining recognizably human. The story has an undertone that murmurs, without ever becoming explicit, “You too would be capable of this, you and your children and your parents and your family.”