Beautiful Boy Afterword—Hope for an Addicted Nation
By David Sheff
June 01, 2009
It's February, and Tweak, the book Nic has been writing, is published. After everything, he completed it, a raw, honest, brutal, and sad—but ultimately hopeful—account of his addiction. When he sent the manuscript to me, I picked it up with trepidation. The story would be painful to read if it was about anyone's child, but knowing it's about mine is unbearable. Even though I lived it, I find it almost impossible to reconcile the Nic I know with the self-destructive boy in his book. And the reality of his experience was worse than the nightmarish scenarios I imagined. Reading, I can hardly breathe. An emergency room doctor once told Nic he was going to amputate his arm, which had become infected from shooting heroin and meth. I know that Nic almost died, but again and again and again I'm reminded how close I came to losing him. I relive the terror, fury, desperation, and boundless sadness. Also the love. In Beautiful Boy I wrote a lot about love, but I continue to learn more about the infinite depth and breadth of parents' love for our children.
Nic's book has helped me understand more about what happened to him and to our family. Often when he was using—his behavior unconscionable, his self-destructive course unfathomable and unstoppable—I felt, How could he do this to me? How could he do this to Karen? To Jasper and Daisy? Reading Tweak, I learned anew that he wasn't doing it to us. He was doing it to himself. We were innocent bystanders, collateral damage.
Beautiful Boy is published too. After my brain hemorrhage and Nic's last relapse, it's a miracle that we survived, never mind that we completed these books. It feels almost surreal to be embarking together on a tour of America to talk about these volumes and their themes: addiction and recovery. The gatherings we attend, in bookstores, coffeehouses, libraries, and schools, seem less like traditional readings than like family sessions in rehab. We meet hundreds of people. Many tell overwhelmingly heart-rending stories. Some don't seem to have chosen to attend so much as been compelled to. Some have tears in their eyes before a word is spoken. Many look like I did at various times, ready to evaporate or melt away. A father, his stoicism quickly overcome by tears, says that his sixteen-year-old son has been in rehab for four days. Another dad says he hasn't slept for weeks, hasn't been able to work. He and his ex-wife, his son's mother, are constantly fighting, blaming each other. After three rehabs, their child, addicted to OxyContin and alcohol, relapsed and was arrested. “I don't know what to do,” he says, as he too breaks down. People tell us that a loved one or they themselves are on their third or fourth or twelfth rehab. We hear about the crack and meth babies, abandoned and abused children, homelessness and drug-fueled violence, hepatitis, AIDS, heart attacks, and liver and kidney disease. Not everyone comes to talk about addiction. Some tell about their own or a loved one's bulimia, anorexia, depression, schizophrenia, bipolar disorder, cancer—just about every mental and physical illness you can name. Mothers and fathers say their sons and daughters, now in their twenties, thirties, forties, are—they don't know where. They haven't heard from them in months or years or decades.
Sometimes I feel as if I'll drown. Relapse, loss, anguish, rage, death—the stories often devastate me. Every day and in every city I'm forced to face this chronic, progressive, and, when untreated, terminal illness. I define and redefine the words in order to fully grasp them. Chronic means that an addiction is constant, unceasing, unending, continual, unremitting, persistent, unrelieved, never-ending. All right. I get the point. Progressive means that it worsens over time. Unless the addicted are treated, they'll deteriorate before our eyes. Then they'll die. That's what they mean by terminal.
There's death everywhere. “Your family's story is my family's story,” people say. They tremble and their eyes well up. Over and over and over again.
“But we had a different conclusion. My beautiful boy didn't make it.”
“My beautiful girl died.”
“Your family's story is my family's story, but we had a different conclusion.”
We're in a library. A man approaches. His eyes are soft and kind. And so sad. “They tell us to talk to our children about drugs—to warn them,” he says. “I was vigilant. I educated my son. When he began using drugs in his early teens, I did what I thought you're supposed to do. I immediately intervened. However, my son was hurting so bad emotionally that he pledged he'd use drugs, especially marijuana, for the rest of his life. Drugs became his savior. From that point on, I did everything I could to stop him. When his drug use escalated and his mental health issues became severe and persistent, I got him what I thought was the best treatment available. He saw psychologists, psychiatrists, and substance abuse counselors. What would you do if your son or daughter got cancer or another serious illness? This is no different. I took my son to the best doctors I could find, got second opinions, and pleaded with him that he could not solve his problems alone. I was optimistic that he could have a normal life. I was probably fooling myself. I was praying for him to finish college, marry his girlfriend, and pursue his career. We all know that sometimes cancer recurs. If this happened to your child, once again you'd find the best treatment possible, given your insurance coverage and financial resources. With addiction, recurrence comes in the form of relapse. My son accidentally overdosed and died. With cancer we know that we can do everything right, yet sometimes its victims die. It's the same with addiction. Sometimes whatever we do isn't good enough.”
So many children have died. So many people. Their parents and lovers and spouses and siblings and children come to see us. You can't imagine how many. As one tells her story, I look over at Nic. From across the room he smiles at me, his eyes clear. I'm flooded with gratitude that he's all right and with unbearable grief for this mother, whose child is gone. And guilt. Why did my son survive when so many others have been buried by their parents? Nic is so lucky to be alive. I'm so lucky to have my son. I look over at him, my beautiful child. Then I look into the other parents' eyes. I'll never forget them. I'll carry their agony and fury—fury at the disease of addiction and our disastrous system of mental health care, which failed them. I'll also carry their dignity and bravery.
There's grief and despair, but also hope, measured in years or months or weeks or a single day. A woman in recovery for thirty-seven years. A girl who says she's been sober three days. And everyone in between. A girl tells Nic that she spent her last twenty dollars on his book instead of meth. “I'm going from here to a meeting,” she says. At a high school auditorium, in a sea of thousands of children, a girl near the back rises and begins sobbing. “My father's a meth and coke addict,” she says. “He beat me. Now I'm using meth and cocaine, and I'm afraid I'll turn out just like him.” It's heart wrenching, but openness is the first step toward recovery. “To anyone going through this, I'm here to tell all of you not to give up,” a gray-haired woman says at a bookstore. “My daughter was addicted to heroin. She lived on the street, was raped, stole, was in prison, and after all that, she disappeared. I didn't know where she was. For a year I thought she was dead. She's back, though. Here.” She looks at the girl sitting nearby. “Three years sober and the most extraordinary person I know.” The girl, with dark hair and a beatific smile, her serene eyes sparkling, rises, embraces her mother.
The final leg of the tour brings us to the Bay Area. Nic and I have a free weekend, which he spends with us in Inverness. On a cool sunny Saturday, we pack the car with a picnic and wetsuits and surfboards and Charles Wallace, our new puppy. At the beach, Nic and Jasper don their black neoprene suits. Jas is almost as tall as Nic now. It's startling to see them together—how much Jasper has grown. It's almost inconceivable that he's a teenager starting high school, that Daisy's twelve, a seventh grader, or that next month Nic turns twenty-six. The two boys grab boards and run into the surf, where they paddle out into the peeling waves. Daisy and her friend build a fort into the side of a cliff. Charles Wallace repeatedly ransacks it.
Nic returns to Savannah, Georgia, where he's lived for the past two years. Three months later, he moves back to Los Angeles. The move worries me. Los Angeles is filled with ghosts for Nic. Ghosts can be triggers. I caution him but remind myself, It's his life.
Many people ask if I've stopped worrying. Sometimes it feels as if things never change, but they do. I worry less. For years I felt anxious whenever I didn't hear from Nic for a day or two because it probably meant he was in trouble again. He'd relapsed. Recently, however, I left a message for Nic and didn't hear anything for four days. When he called back, he said he'd been away for the weekend. It struck me that over the entire four days I hadn't once freaked out. Things can change, albeit slowly, in fits and starts, with forward movement and regression. Yes, I stopped worrying in the same persistent, all-consuming way. But I don't think parents ever stop worrying about our children. Sometimes I'm fine. Sometimes I worry. Will Nic relapse in LA? Could the success of his book cause him to relapse? Could failure? Attention? No attention? Criticism? Praise? Rejection? Stress? Boredom? Loneliness? Impulsiveness? Quiet? I worry. I worry less. Really.
We're having dinner at Nancy and Don's. It's late summer and the sky is orange and smoky from the spate of fires burning through California's forests. Other friends arrive, friends we haven't seen for a while. Around the redwood table, one of them asks about Nic.
Sometimes I tire of the convoluted, messy truth. It's so much easier to indulge myself by keeping it superficial, by offering a Zen snapshot: “Nic's great.” Karen and I had just visited him in LA. We saw a movie, visited museums, took a long walk with Nic and his hound dog, a stray he rescued. We laughed, listened, commiserated, made plans, compared notes, contemplated the future. It was a great couple of days. Nic seemed fine, but he acknowledged that it had been a difficult few months since he relapsed.
Yes, Nic relapsed.
How did he relapse after two years? Was it two years? The word chronic plagues me these days. I wonder if the human mind can truly comprehend certain words. I struggled with death, but I fully grasp death now—the finality—through, and with, the people who have faced it. Chronic eludes me, though. I say forever and always and never-ending, and I understand them, but still I feel that the worst is over. It's not that I'm completely surprised by a relapse; I no longer deny the insidiousness of addiction. Another relapse is testament to the chronic part of it. As Nic would say, “This disease sucks.”
But a relapse strikes me with another wave of overwhelming sadness that Nic has this terrible illness, and many other familiar emotions resurface. I thought, Why must I keep learning and relearning the bleak lessons of addiction? How many times must I be traumatized? Clearly I'm still part of, contributor to, and victim of a culture of denial. When Nic relapsed, however, I knew it wasn't up to me. Nic would have to decide what, if anything, to do.
Other relapses quickly led to catastrophe, but Nic stopped this one. He recognized it for what it was and concluded that he needed help. Almost immediately he checked himself into a residential program. From there he enrolled in outpatient treatment that included therapy, twelve-step meetings, recovery support groups, and drug testing. He began working with a new psychiatrist who he says is remarkable, an expert in addiction and the disorders that often accompany it. The ability to recognize relapse and choose to get help is a sign of enormous progress. Am I grasping at straws? “As AA has long professed, recovery is about progress, not perfection,” Benoit Denizet-Lewis writes in America Anonymous. Nic has made significant progress, though it guarantees nothing.
My friend repeats her question: “How's Nic?” I say he's doing pretty well after his relapse. I also admit that I relapse, though in a different way. I'm usually fine, but I can still be overcome by worry and panic and a futile need for control. Then I'm better again. I live with the knowledge that I can listen to Nic, advise him when he's interested in what I have to say—we're pretty good these days about talking openly. But it's up to him.
I stop speaking and my friend looks up at me. “It sounds as if it's still so hard,” she says. Then she says that she read a book that might help me. “It's about exactly what you're going through—about how hard it is to be a parent,” she says. “You really ought to read it.” I can use all the help I can get, so I take out a pen and notebook to write down the title. She says, “It's called Beautiful Boy.”
So here's the point: I struggle. I know, and have repeatedly said, that it's an ongoing process, yet I can forget that ongoing means—well, it means ongoing. I've come a long way toward accepting that to live with addiction—one's own or a loved one's—involves living with uncertainty. It also requires enormous suffering. I'm coming to accept these truths after years of fighting them. The surprise is that the more I accept them, the less I suffer. But that's not all I feel. Early in the year, before it was published, Jasper read Beautiful Boy. Of course he knew the overarching story, but he had been too young to remember many of the details. In a report about the book for his English class, Jasper wrote that he had known the book would be hard to read, that much of it would be scary and sad, but he hadn't been prepared for something else. He didn't expect to laugh. "It was so great remembering all the things we did when I was little,” Jasper wrote. I understand how he felt. Somehow it's easier to recall the trauma than to hold on to the contradictions and complexities and yes, the joyful times. “There were horrible moments when Nic was using and on the streets,” Jasper continued. “There were happy moments such as when our family was together, or when Nic and Daisy and I played in the garden.” Both. Both, and every other moment, tell the story of our family.
Since the initial tour for Beautiful Boy wound down, I've continued to hear from others suffering from the disease of addiction. Sometimes Karen and I sit together on the couch and read their letters. People write about how their own or a loved one's addiction consumes their life. Their pain is so familiar to me—desperate and unbearable. Many people confide that the addiction in their family is a deep, dark secret.
Addiction is America's deep, dark secret too. Every story in those letters reflects millions more, from every corner of the country. A report by the National Institute on Drug Abuse concludes that, “every community is affected by drug abuse and addiction, as is every family.” Yet when they strike, most people are caught off guard. Given the enormity of the suffering, its astounding that we—the collective we—are doing almost everything wrong in our fight against addiction.
Most people know that President Nixon inherited the war in Vietnam, but few remember than in 1971 he initiated the war on drugs. Without question, it has been a failure, costing hundreds of billions of dollars, while the use of drugs, plus the resulting morbidity and death, has risen steadily. Testifying before the Senate Judiciary Subcommittee on Crime and Drugs in 2008, Leonard J. Paulozzi, M.D., MPH, an epidemiologist with the Centers for Disease Control and Prevention, summed: “The mortality rates from unintentional drug overdose have risen steadily since the early 1970s, and over the past ten years they have reached historic highs.” First-time users are younger, the drugs themselves are stronger, and there are many more types of drugs to abuse. Users can get their drug of choice whenever and wherever they want. Yet in spite of these facts, the federal government boasts that we're making progress. Statistics are manipulated, misused, and ignored to mask the fact that we're playing a zero-sum game, because addicts, unless treated, will find drugs.
The government's handling of the problem would be laughable if the implications weren't so disastrous. Four thousand Americans have died over the course of five years in Iraq, whereas more than twenty thousand die each year of drug overdoses alone, and that number continues to rise. In many regions of the country, overdoses have or will soon surpass automobile accidents as the leading cause of non-natural death. Consider the related tragedies that can result from drug use—crime, accidents, suicide, drug- and alcohol-caused illnesses, lost productivity—and you'll begin to fathom the enormity of the problem, much of which is hidden.
It's hidden because most addiction-related deaths are officially ascribed to other causes: suicide, homicide, automobile and other accidents, heart attacks, hypertension, pulmonary disorder, strokes and other brain hemorrhages, hepatitis and other infections, HIV/AIDS, liver disease, respiratory disease, kidney disease, septicemia, and on and on. Health insurance companies—and Medicare and Medicaid—often refuse to pay (or pay at a lower rate) for treatment of illnesses or injuries caused by drugs or alcohol, so doctors tend to report a diagnosis that will ensure payment. Thirty-two states still enforce statutes—the Uniform Accident and Sickness Policy Provision Laws, enacted in 1947—that allow insurance companies to refuse to cover medical care in hospital emergency rooms if alcohol or drugs contributed to the patient's condition. Also, payment of life insurance may be denied if drug or alcohol abuse led to death, so doctors and medical examiners do grieving families the “favor” of citing a death's immediate cause—an accident or an ailment—rather than the underlying, primary one. And apart from these more practical reasons, addiction remains a secret because of the overwhelming shame associated with it. Last year, when the scion of a prominent Midwestern business family died suddenly, newspaper accounts cited the cause of death stated on the coroner's death certificate: injuries sustained in a motorcycle accident. The lethal dose of heroin in the young man's bloodstream was never mentioned.
While we go on denying the ubiquity of addiction, we marginalize and stigmatize its victims. According to a national survey called The Face of Recovery, one quarter of the people in recovery have been denied a job or a promotion or have had trouble getting insurance; seven in ten reported that they had experienced shame or social embarrassment. In our society, addicts are viewed as having a character deficiency rather than a serious illness. We ignore their condition except to criminalize it and the dangerous behavior it can lead to. In addition, the threat of arrest and prosecution make it less likely that addicts will admit their problem and seek early treatment. So the disease progresses, making it more likely that addicts will become criminals, often dangerous ones.
We fail miserably when it comes to education about drug abuse and addiction. The week-long education sessions provided at school pale—in quality and quantity—in comparison to messages that promote use and abuse. We fail at prevention too because we're inept at diagnosing and treating the psychological and social problems that create fertile ground for addiction. “A presentation on the dangers of drug use will have little impact on the likelihood that a child who is experiencing depression, anxiety, learning disabilities, eating or conduct disorders, low self-esteem, or sexual or physical abuse or neglect, or who has no hope for the future, will self-medicate with drugs and alcohol,” writes Joseph A. Califano Jr., the former U.S. secretary of health, education and welfare, in the book High Society.
Stigma and prejudice have also curtailed financial support for research into addiction. As a result, few effective treatment options have been developed, and thus addiction carries a relatively poor prognosis, which reinforces its stigma. (Many people think addicts can't get well.) Addicts who manage to find their way to a good program may find it impossible to pay for it; costs for the most highly recommended programs may run at $30,000 to $50,000 a month—or more. Therefore few addicts get the long-term, comprehensive care they need. And by the time addicts seek treatment, if they do, they're usually in crisis, which makes them difficult and expensive to treat. In addition, they're likely to be belligerent, angry, depressed, or even violent, so doctors, nurses, counselors, and social workers don't always want to treat them. Some caregivers admit they'd rather spend their energy, as a nurse put it, “on appreciative patients rather than antagonistic ones who'll likely be back in the ER in a week or month or two.”
At the same time, addict watching has become America's favorite spectator sport. Last year Us magazine featured a photograph of Britney Spears on its cover, emblazoned with this gleeful headline: SICK! CNN ran a piece about “our favorite bad girls,” a list that included Spears, Amy Winehouse, and other celebrities with addiction problems. We'd leave these women alone if they had cancer, but victims of addiction are fair game. We revel in their misery and judge them for the irresponsible, humiliating, and appalling behavior their disease causes.
I think the gloating reflects something beyond the assumption that addicts deserve their fate because they're immoral, spoiled, and weak. We laugh because it's someone else's pain, while our own simmers below the surface. But then it boils up. “I thought we were immune.” I've heard it so many times. “I'd always thought, Not my son.” “Not my daughter.” Not my husband. Or wife. Or partner. Or brother or sister or mother or father. Addiction, the equal opportunity affliction, has struck again. And few of its victims—only one in ten—will get help.
The war on drugs wasn't the only one Nixon declared in 1971. In his State of the Union address that year, he also declared war on cancer. “I will ask for an appropriation … to launch an intensive campaign to find a cure for cancer,” he announced. “The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal.” By the end of that year, he had signed into law the National Cancer Act, declaring, “I hope in the years ahead we will look back on this action today as the most significant action taken during my Administration.”
Cancer hasn't been eradicated, of course, but the illness, once a death sentence, is now often treatable. According to Vincent DeVita, M.D., former director of the National Cancer Institute, the war on cancer “did everything it was supposed to do.” The incidence of cancer began dropping in 1990 and has continued to fall every year since then. Since 2004, the death rate from cancer has decreased at double the rate of the previous two decades.
I believe we need an all-out war on addiction modeled on the war on cancer. We could save millions of lives and billions of dollars now squandered on, and by, addiction. But we won't make a dent in this problem unless we decide to fight the right war.
What would such a campaign look like? Like the war on cancer, it would have to be well coordinated and lavishly funded, comprehensive, multifaceted, and long-term. “The war on cancer supported basic research handsomely,” notes Dr. DeVita. “It set up application programs and U.S. clinical trials programs. The measure gave the National Cancer Institute (NCI) unique autonomy within the National Institutes of Heath to fund and coordinate research.” The war on addiction should include significant money for research as well as similar application and clinical trials programs. How much money? The NCI's budget for 2007 was almost $5 billion, and NCI pays for only about 45 percent of cancer research. In all we spend more than $10 billion a year researching cancer. Each year we spend, or rather misspend, more than $20 billion on the war on drugs. (In total we've spent in excess of $700 billion.) On prisons we spend billions more as a result of drug use. And yet the annual budget of the National Institute on Drug Abuse, which includes almost all drug-related research and development, is less than $1 billion.
Researchers have hundreds of promising ideas for medications, cognitive and behavioral therapies, and combination treatments that could improve the odds for addicts. I mention some of these in Beautiful Boy. At the moment, most are untested. A flood of money into the field will allow a far wider range of study and draw in new researchers who will intensively examine the mechanics of addiction and develop and test promising treatments.
Next, we need to create an American Addiction Society—analogous to the American Cancer Society (ACS)—devoted to education and fund raising, in order to supplement and support the government's efforts and to lobby for new initiatives. The ACS and other private organizations fund almost half of cancer research. An American Addiction Society could eventually achieve as much.
And then there is the matter of insurance coverage. We can't imagine an insurance company paying for a week or month of treatment for a cancer patient, but then withholding any further coverage. As part of an effective war on addiction, insurance companies must be required to cover comprehensive addiction treatments, which are the most effective we have. Paying for the best treatment money can buy is expensive, but not doing so is more expensive. RAND Corporation's drug-policy center found that for every dollar spent on treatment for addiction, taxpayers save more than seven in other services, largely through reduced crime and medical fees and increased productivity. A visit to the emergency room, for instance, costs as much as a month in rehab.
The final component of a war on addiction should be prevention, the current buzzword for dealing with obesity, heart disease, and many other illnesses. We could save billions of dollars and untold lives if we intervened early and prevented the progress of addiction and its effects: serious illness, inability to work, destruction of families, crime, and ultimately death. Addiction prevention would identify and face head-on the social and psychological conditions, including mental illness, that often lead to addiction.
In addition to lowering morbidity and mortality, the war on cancer changed the way we look at the disease and treat its sufferers. Cancer is no longer the “Big C,” a secret shame. Addiction, destigmatized, would come to be thought of as a terrible disease, best recognized and treated early. This might be the biggest breakthrough of all.
Can we cure addiction? Again, despite thirty-five years of aggressive research, many cases of cancer resist treatment. But we have made dramatic progress. And in the process we've relieved incalculable suffering, saved hundreds of millions of dollars, and saved millions of lives. A war on addiction would do the same—and more. By dramatically decreasing emergency room visits and prison populations, we'd eventually free up funds to treat other illnesses, improving health care across the board. We'd eliminate much homelessness and dramatically reduce violence, including child abuse, spousal abuse, and violent crime. We'd help families stay together and repair broken neighborhoods. We'd alleviate immeasurable suffering.
Printed from Oprah.com on Thursday, December 5, 2013