Let me begin by acknowledging that to speak of addiction/substance use disorder wedged in between an all campus event, “Pints and Pinot”, and our approaching class cocktail hour may possibly place me in an abstinence hostile environment. I’ll do my best to trespass on neither your time nor your good will.
I must be very clear on one point. This talk arises out of the untimely overdose death of my son, William, just turned 24 in 2012. I make no claim to being special. This is not, as my son would call it, a “pity party” for Bill. I am acutely aware that loss and tragedy are something we have all experienced in some measure over the time since our graduation, including our mutual loss of classmates. Let’s not kid ourselves, some of our classmates not with us today, classmates both alive and dead, have struggled with substance use disorder.
Addiction, more properly called substance use disorder, is a chronic, relapsing disorder characterized by compulsive drug seeking, continued use despite harmful consequences, and long-lasting changes in the brain. In ways tragically large or deviously less obvious it affects everyone in this room. It is a family disease. It is a catastrophe of our culture.
Between 1966 and 1969, while we at Bowdoin were contemplating our various responses to the Vietnam War, our contemporaries already in combat were stimulated by some 225 million amphetamine tablets prescribed by the military command. The boys on the ground did their own prescribing. By 1971, according to a report by the Department of Defense, 51 percent of the armed forces had smoked marijuana, 31 percent had used psychedelics, and an additional 28 percent had taken hard drugs, such as cocaine and heroin. Estimates of heroin use ranged from 15% to 20% of the force, largely those drafted and enlisted, not the officer class. A more hard-core consumption of drugs than we entertained during those best four years of our lives.
Spurred by public concern that habitually using soldiers would return from Vietnam and abuse drugs at home, the White House implemented “Operation Golden Flow” in June 1971, which mandated that all servicemen subject themselves to urinalysis before boarding planes back to the United States. Should a serviceman fail to pass his drug test, he was required to stay in the country for detoxification, only to be released back to the United States upon a successful negative test.
It is no accident that Operation Golden Flow, also nicknamed “Lemonade Party”, began at the same time President Nixon officially declared his “War on Drugs.” Back in the USA drug abuse officially became “public enemy number one.”
Speaking to the New York Times then, one officer said, “They may get some medical attention, too, but the purpose is clearly to get the guys out of the service fit. I only wish the state of thought on rehabilitation was as advanced as that on punishment.” A prophet half a century ahead of his time.
The War On Drugs continues to this day, our country’s longest fought war. It has been expensive, costing over a trillion dollars. Historian Alfred McCoy wrote recently in The Nation that “Instead of reducing [drug] traffic, the war has actually helped stimulate a tenfold increase in global opium production and a parallel surge in U.S. heroin users from just 68,000 in 1970 to 886,000 in 2017.”
Consider this statement from the Drug Policy Alliance: With less than 5 percent of the world’s population but nearly 25 percent of its incarcerated population, the United States imprisons more people than any other nation in the world – largely due to the war on drugs. Misguided drug laws and harsh sentencing requirements have produced profoundly unequal outcomes for people of color. Although rates of drug use and sales are similar across racial and ethnic lines, Black and Latino people are far more likely to be criminalized than white people. Nearly 80 percent of people in federal prison and almost 60 percent of people in state prison for drug offenses are Black or Latino.
The National Institute on Drug Abuse – NIDA – estimates that abuse of tobacco, alcohol, and illicit drugs costs our nation more than $740 billion annually in costs related to crime, lost work productivity, and health care.
By any measure, this war, a constant of our adult lifetimes whether we’ve been aware of it or not, is a colossal failure. A failure, I might add, no wall will correct.
In early December of 2012 my son, William, entered Columbia University’s College of Physicians and Surgeons at the age of 24. His arrival there was off the beaten track, beginning with visits to a psychotherapist. Over the next two years stops on the way included an addiction psychiatrist, out-patient treatment, treatment with Suboxone, in-patient detox, in-patient treatment, out-patient treatment, out-patient detox, treatment with a drug called Vivitrol, more out-patient treatment, another in-patient treatment, more out-patient treatment, a revolving door of well over a dozen trips to and from the emergency rooms of at least four different hospitals, an attempt to work with another addiction psychiatrist, Alcoholics Anonymous, Narcotics Anonymous, and a home life fraught with tension and despair, sometimes hopeful during intermittent periods of sobriety, but always filled with the apprehension of misfortune.
William’s credentials for Columbia were unorthodox, “acute and chronic substance abuse” which caused “complications of acute heroin intoxication”. William was admitted, not as a medical student, but as an anatomical donation. A cadaver. His credentials came from his death certificate, not any academic transcript.
Apprehension became fact when William accidentally overdosed in our living room. I discovered him there and frantically called 911. As a result of his acute intoxication, when his heart stopped beating for too long, despite extraordinary work by emergency personnel, William was placed on a protocol called therapeutic hypothermia to cool his body down in an attempt to prevent brain damage. Six weeks of comatose and/or heavily medicated hospitalization followed – six weeks of a family bedside vigil - before a neurologist used the analogy of cut flowers in a vase to explain the state of William’s brain. The cut alone is damaging. Yet, initially, the freshly cut flowers look fine. As time passes, they shrivel, wither, and dry up. We had to comprehend and accept that William was consigned to a persistent vegetative state. There would be no miracle. William would blossom no more.
We made the agonizing decision to remove William from life support and contacted the New York Organ Donor Network. Our admiration for their dedication, compassion, and professionalism knows no bounds. Organ donation for someone in a vegetative state requires an expedient demise once removed from life support. William did not expire within the necessary one-hour time frame, though his mother, sister and I were with him in the operating room, singing to him talking to him, and telling him what he could not comprehend, that he could let go. Rather, he lasted another 21 hours before drawing his last breath in our arms. William had been attached to monitors and machines for six weeks. The last thing I was able to do for my boy was to detach every wire and sensor from his body – to free him to be on his own. Determined that his death not be in vain, his mother, sister and I made the gift of his body, an anatomical donation, to the College of Physicians and Surgeons at Columbia University. In another time, in a better era, William might have entered the College of Physicians and Surgeons, not as a cadaver, but as the gifted and talented young man he was.
Since William’s death, my wife, Margot, and I have been introduced to many brave parents who have lost children to addiction. Parents whose lives, like ours, are scarred with the collateral consequences of addiction. Parents who, like us, have asked themselves over and over, “If only?” In our case, if only William had not been released from inpatient rehab “against clinical advice” after a mere ten days, because his insurers would not approve any further treatment? If only any one of four different hospital emergency rooms recognized that William’s repeated overdoses made him a danger to himself and detained him for a thorough diagnostic assessment rather than simply releasing him when he regained coherence. If only, in a “Come to Jesus” moment, when he finally arrived at a hospital of his own volition, with his bag packed (including two books - George Carlin’s When Will Jesus Bring ThePork Chops and John Medina’s Brain Rules), if only his insurer had honored his request for inpatient detoxification rather than denying it as “not medically necessary”, thus denying him treatment four days before he fatally overdosed? “Not medically necessary” despite his self-admitted polysubstance abuse of heroin injection, benzodiazepines, marijuana, and alcohol. If only, despondent, he hadn’t overdosed in a Starbuck’s bathroom within hours of being denied, then been treated and released from a hospital the same afternoon, all without our knowledge? If only we’d happened to look into our living room where he was “watching TV” just a few minutes sooner, before I discovered him slumped over, a needle on the floor, in or about to be in cardiac arrest.
Were I to have a one on one conversation about substance use disorder with any individual in this room, I’d ask, “What is your personal experience? How has substance abuse affected you and your family? You and your friends?” Might I see a show of hands of those who would have a story to tell? Might I see a show of hands of those who would feel comfortable revealing your story with someone seated near you right now? Relax, I won’t follow through on this. I did want to tickle your sense of the shame and stigma that surround this disease. In a meeting with our newly appointed head of the Office of National Control Policy, Jim Carroll, I asked him the same question. He bravely shared with me a personal story that by his own admission he’d never opened up about to anyone outside his family before. It’s that story that helps propel him in his daily work.
Our family story falls closer to the norm than the anomaly. There are hundreds of thousands of family stories out there. More than a few have come our way since we shared ours. One parent wrote: “Addiction isn’t a spectator sport. Eventually, the whole family gets to play.” This was and is certainly true for our family, even as we’ve played a man down for over six years. Addiction is a family disease. More than 2/3 of American families have been touched by addiction. 20% of Americans live with mental illness. Mental illness and addiction often combine, requiring a careful dual diagnosis and equally careful treatment. According to the Surgeon General’s 2016 report, Facing Addiction in America, one in seven Americans will experience a problem with alcohol or drug abuse in their lifetimes. It is not inconceivable that 14% of us, 14% of the people in our class, as in the population at large, will have, do have, or have had a personal battle with substance abuse. That’s 14% of those who graduated from Bowdoin last week. 14% of the entire student body. 14% of the faculty. 14% of college presidents. NO ONE is exempt from the possibility of a personal or family battle with this disease.
Writing for Voxin December of 2017 Senior Correspondent German Lopez cited stigma as the single biggest reason America is failing in its response to the opioid epidemic. He wrote, “We need to stop treating addiction as a moral failure.” He quoted Dr. Sarah Wakeman, medical director at Mass. General Hospital’s Substance Use Disorder Initiative who said, “For 100-plus years as a society, we’ve punished and criminalized people who use drugs.” I would take the timeline further back. Nearly 400 years ago, when the Puritans landed, they immediately set about constructing jails to detain transgressors, scaffolds for public shaming or physical chastisement, and dedicating land for cemeteries. They thus prepared us to treat addiction. We remain stubborn in our adherence to that model.
The scarlet letter of our time remains A, now for Addict. Write or advocate about substance use disorder and you can expect responses like “Darwin at work.”, “Let the herd thin itself. Why should the taxpayers always pay for all the screw ups in the country?”“They deserve to die.” German Lopez once received this response to an article, “Let these lost souls pay the price of their criminal choices and criminal actions. Society does not owe them multiple medical resuscitations from their own bad judgment, criminal activity, and self-inflicted wounds.”
As Andrew Solomon wrote in his brilliant 2012 book Far From The Tree, “We live in xenophobic times, when legislation with majority support abrogates the rights of women, LGBT people, illegal immigrants, and the poor.” I would add that at the end of the parade, behind even those disenfranchised groups, are the mentally ill…and bringing up the very rear, people with substance use disorder. We perpetuate a mythology in the way we speak of the afflicted. Prejudice, hatred, and stigma marinate in our language. Here are a few examples collected by addiction historian and personal hero William L. White. We freely call the sufferers: lushes, alkies, disturbed, acid freaks, boozers, scary, coke whores, crack heads, winos, tipplers, nuts, loonies, pill poppers, speed freaks, people with a screw loose, mental inebriates, drunkards, dope fiends, druggies, junkies, dipsomaniacs, dopers, freaks and retards. We persist in trying to make what we fear disappear by naming it and shaming it. We prefer the myth of weak morality to the fact of disease.
I sometimes say William’s death certificate should list “institutional indifference” as his cause of death. A notable friend and advocate suggests “societal malevolence.”
Stanford addiction psychiatrist Anna Lembke explains, “If you see somebody who continues to use despite their lives being totally destroyed – losing their jobs, losing loved ones, ending up in jail – nobody would choose that. Nobody anywhere would ever choose that life. So clearly it is beyond this individual’s control on some level.”
Nora Volkow, the head of NIDA puts it this way: “To explain the devastating changes in behavior of a person who is addicted, such that even the most severe threat of punishment is insufficient to keep them from taking drugs—where they are willing to give up everything they care for in order to take a drug—it is not enough to say that addiction is a chronic brain disease. What we mean by that is something very specific and profound: that because of drug use, a person’s brain is no longer able to produce something needed for our functioning and that healthy people take for granted, free will.”
We are faced with the difficult process of changing hearts and minds. That means talking to minds that have no heart, talking to hearts that have no mind, and talking to those who have neither but believe they have the best of both. It can be daunting. We must not back off.
One mother who lost a son and is now a fierce advocate posted on Facebook -- WARNING: While we’re having a surge of overdoses, we’re also experiencing a surge of assholes with excessive unfounded opinions, an all-time high level of ignorance, with a frighteningly low level of compassion, coupled with big mouths.
We as a nation need to get over the fiction that will power is the cure for a brain disease. Will power needs to be exercised, not by the helplessly afflicted, but by policy makers who can alter the course of a catastrophe consuming us.
Stigma’s sibling is silence. As we learned from the AIDS epidemic, Silence Equals Death. Addiction blossoms and proliferates in the petri dish of silence. When we don’t speak openly and honestly about the abuse of any substance we aid and abet a killer. My wife, Margot, and I have been to what we call “fake funerals.” Mourners arrive and leave with no knowledge that substance abuse was the cause, or a significant cause of a person’s death. I’ve been through this troubling experience with some of you. Doubtless others have experienced it as well. Ever so slowly, however, especially among parents of young people taken by drugs, there is an impulse to incline toward the full story, toward the truth in spoken memorials and in written obituaries. Stories told to help save lives.
In June 2016 The Addiction Policy Forum launched an awareness and action campaign called #129aDay, based on the Center for Disease Control's numbers of 129 lives lost a day due to a drug overdose in 2014. 47,000 for the year.
The campaign has had to change its name annually as the death toll continues to rise.
144 a day in 2015– 52,000 deaths for the year, surpassing the number of Americans who died in the peak year of the AIDS epidemic
174 a day in 2016– 63,000 total
192 a day in 2017. 72,000 total. 68% of those deaths are due to opioids
We have not reached the crest of this catastrophe.
Actual opioid deaths are likely 25 – 30% higher than those reported by CDC. Take 2016 for example. The 42,000 deaths reported are more like 50,000 due to the stigma around addiction that inhibits accurate reporting.
The current 192 a day figure totals 72,000 deaths a year. That is 20% higher than the total number of American deaths in the Vietnam war. The casualties in the two recent Boeing air crashes were 189 for Lion Air and 157 for Ethiopian Air. Each fewer deaths than 192. Fanfare, action and reaction, and government intervention, however, are exponentially higher for those air crashes.
Of the 192 deaths a day 10% are between the ages of 12 – 25. That is a Parkland…every day.
The Center On Addiction has been in existence for 26 years. Their calculation is that since the Center’s founding 720,000 American lives have been lost to addiction. That is more than all the American lives lost in combat from WWI through WW II through the Korean war, Vietnam, Iraq, and the ongoing Afghanistan conflict. This is not an epidemic. It is not a crisis. It is, as I’ve said before, a catastrophe.
Early freshman year, I recall reading Michael Harrington’s study on poverty in the United States, The Other America. Did we all have to read it? Memory fails, or at the least, fades. Sound familiar? The book, I mean. Last summer I read J.D. Vance’s new book, Hillbilly Elegy, subtitled A Memoir of a Family and Culture in Crisis. Separated by over fifty years, both books detail the deep pain and the struggle that is life in Appalachia: especially Southern Ohio, Eastern Kentucky, Western Virginia, and West Virginia. Two other recent books, Dreamlandby Sam Quinones and Dope Sickby Beth Macy illustrate how an already struggling, depressed, and fragile swath of our country became the rural epicenter of our opioid crisis. Oxycodone (nicknamed hillybilly heroin), Purdue Pharma and other pharmaceutical companies, unscrupulous doctors and pharmacists, pill mills, cheap black tar heroin from Mexico marketed in an innovative fashion, what Quinones calls “the voiceless scourge abetted by silence” – all have wrought devastation upon Appalachian communities. Macy titles the first chapter of her book “The United States of Amnesia”. A public health crisis remains where the aptly named Diseases of Despair – drugs, depression, and suicide – are epidemic. Another America, narcotized America, struggles on. Put any or all of these books on your reading list. Hear the echoes of this epidemic in the state where you live.
Enough. Time to end with some good news and a brief coda. For all the Americans we have lost and the over 20 million currently suffering from substance use disorder, 90% of whom lack treatment of any sort, there are also 23 million of us in sustained recovery. Largely anonymous people returned to productive lives, working, paying taxes, supporting and raising families. Many who have turned their lives around devote themselves to helping others. Recovery is possible. I’ve seen it. There is hope. I’ve been led, mentored, and inspired by people in recovery – among them, thankfully, some classmates. Our former drug czar, now working at Boston Medical Center, Michael Botticelli, comes immediately to mind. Perhaps some of you have heard of him and his good work.
For some while we knew nothing about the disposition of William’s body, other than that it had arrived at Columbia’s Medical School . In April of 2014 we were invited to a moving memorial service conducted by first year med students for donor families, but learned only that William was used for a special project, not the first-year anatomy lab.
In late winter 2018 we were contacted by a writer working on a piece for Columbia Medicine Magazine. She wanted to incorporate our family’s story into an article she was working on about opioids. I wrote her to say that we had no idea how William’s body had been used. We knew it had been used somehow, as his ashes were presented to us at the 2014 memorial service.
She wrote back. "Will's body was used to augment/improve the images and instructions in the iPad "manual" used by Physicians &Surgeons students throughout their anatomy training. My sense is that the manual is constantly being augmented and improved (what with its being digital and so inexpensively revised). The instructor specifically mentioned how valuable it was to include images of Will's anatomy, because being young and healthy, the images give a clear contrast with the various disease states students will encounter with their patients.”
About the time William died, Columbia medical students dissatisfied with the classic manual Grant’s Dissector, first published more than 60 years ago, heavily reliant on drawings and still in wide use, initiated a project to compile thousands of photographs into a digital anatomy manual. Some of us here today may have begun careers on Grant’s Dissector. Now the Columbia University Clinical Gross Anatomy Dissection Manual is available to anyone on iBooks. The fully interactive multi-touch book contains simple step-by-step instructions accompanied by photos of real dissections, a complete glossary for every bold term, and quizzes throughout.
I contacted Dr. Paulette Bernd, director of the gross anatomy program and editor of the dissection manual. She wrote back, “Most of us have these prejudices, whether conscious or not, with respect to addicts, those with mental illnesses, those who are obese, those who are uneducated, those with sexually transmitted diseases, etc. etc. etc. Overcoming these prejudices cannot begin until students are made aware that they exist and that people that have any of the above maladies should not be shamed or deemed inferior.”
She added that students using the digital manual right at the anatomy table are less frustrated, rely less on faculty, and do better dissections—and they get better grades on both practical and written exams.
Our determination that William’s death not be in vain has been realized. Our Will will contribute to the common good for what we hope is a long time.
I conclude with Andrew Solomon’s words that serve me as balm and inspiration –
“…we all have our darkness, and the trick is making something exalted of it.”
It’s only our 50threunion. Plenty of time left as we all continue to strive toward the exalted. Let’s do it!
Thank you.
Excellent address Bill. Very clearly and powerfully presented. Thank you for sharing.
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