On January 14th I had the good fortune to be able to return to my alma mater, Kent School, to address the student body in a chapel talk. Those familiar with my writing may recognize some of what I said as familiar. I am grateful to the Rev. Kate Kelderman for inviting me and to Kent students for their engaged response. My remarks are below:
Thank you Rev. Kelderman for your invitation to come back to Kent and for your generous introduction. Thank you all for the opportunity to be with you here today. Over 55 years ago, about this time of year, I drove up Route 7 with my parents for my interview. From across the river I saw Numeral Rock, the Schoolhouse and St. Joseph’s Chapel for the first time. The following fall I entered Kent at 4’11” and 87 pounds, the smallest of the 300 boys in the school. It’s hard to believe, but those 55 years span half the life of Kent School. Suffice it to say both Kent and I have grown during that time span. It’s good to return to Kent again.
I’ve been a teacher all my life. Something I hope some of you will aspire to. A theater teacher to be specific. Last spring I spent a glorious April day (indoors anyway – it was snowing outside) working with Mr. Stewart and members of the Kent Theatre Company.
In the most basic way, I’ve made my living as a storyteller. I delight in being told, dreaming about, reshaping and retelling the tales that make our culture; tales that outlive their tellers. I spend much of my time helping artists of all ages to decode, compose, illuminate and narrate these tales. I often share with my students the Storyteller’s Creed I discovered in Robert Fulghum’s book All I Really Need to Know I Learned in Kindergarten.
I believe that imagination is stronger than knowledge.
That myth is more potent than history.
That dreams are more powerful than facts.
That hope always triumphs over experience.
That laughter is the only cure for grief.
And I believe that love is stronger than death.
Allow me a moment now to do what I do so often, tell a story. The story of what brings me here to you. My family’s story. The story of our son and brother, William.
In early December of 2012 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, and 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.
William accidentally overdosed in our living room, just over three years ago. 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. 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.
At William’s memorial service his sister, mother and I made the following pledge: “We promise to do everything in our power to educate and inform people about drug abuse and its prevention, to provide ever more enlightened treatment for addicts, to help make treatment options for addicts more readily available, and to remove the stain of shame surrounding this disease.” We’ve done our best to honor that pledge, in part by my being here with you today.
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, 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 The Pork Chops and John Medina’s Brain Rules), if only the insurer Emblem Health and their utilization review subsidiary Value Options had considered his request for inpatient detoxification medically necessary, rather than denying him treatment four days before he fatally overdosed? 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?” Unfortunately, our family is closer to the norm than the anomaly.
There are lots of family stories out there. More than a few have come our way since we shared ours. One parent wrote last year: “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 the last three 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. It is not inconceivable that 10% of us, and I’m assured the number is conservative, that 10% of the people in this chapel, as in the population at large, will have, do have, or have had a personal battle with substance abuse. That’s 10% of those who will graduate this year. 10% of the entire student body. 10% of your faculty. 10% of the heads of New England private schools. 10% of Episcopal priests. NO ONE is exempt from the possibility of a personal or family battle with this disease.
129 People Stand Up.
The current number of people who die from opioid related deaths in this country (that is prescription pills and heroin combined) is 129 daily. Daily. The number of people you see standing before you die from opioid abuse in America each day. In a week that number becomes larger than the Kent community of faculty, staff and students. In a month, larger than the population of the town of Kent.
Addiction now consumes communities, cities, entire counties and states. It is a deadly sport that may well deserve the title of our unspoken national pastime. I speak today for the multitude of families confronted by this plague in our time.
Why do I call this a plague? Why is it an epidemic? Allow me to share a few figures.
· 10 million young people in America are in current need of treatment for substance use and addiction.
· Heavy use of marijuana among teens is up 40 percent since 2008.
· 1 in 4 teens reports having misused or abused a prescription drug at least once in their lifetime.
· 80% of recent heroin initiates have previously abused pain relievers.
· 1,756 teenagers will abuse a prescription drug for the first time EACH day.
· One in six parents believe using prescription drugs to get high is “much safer” than using illicit drugs.
It may seem like I’m pointing a finger at students here when the statistics I cite are about young people. I’m not. But please consider this: A recent study indicates that a factor that is particularly predictive of who will develop the disease of addiction is the age of first use. In 96.5 percent of cases, addiction originates with substance use before the age of 21 when the brain is still developing and is more vulnerable to the effects of addictive substances. That includes alcohol and tobacco. I repeat, I am not pointing a finger or accusing. I AM giving an urgent warning to anyone here with a teenage friend, a younger sibling or a teenage child about the dangers of early experimentation and use.
The sad fact is that we are barely able to talk about addiction, much less treat it. When I came to Kent for my interview in 1960 cancer was discussed, if at all, in hushed tones. Shame and fear kept it under wraps. Today secrecy and anonymity are part of the disease of addiction. It feeds on silence. When we don’t talk about substance use we are, in fact, afflicted with the disease ourselves. The stigma surrounding addiction and those afflicted is so pronounced it is hard to get parents, schools, or even whole communities to talk about it openly. See for yourself. Try talking about it with your parents or teachers. Try talking about it with a friend you might be concerned about. You, the students, initiate the discussion. YOU be the leaders. That’s the first step to battling the epidemic. That’s why I’m here today.
Discussions about Substance Use Disorder in its various guises often include ideas about “Rock Bottom”. The notion being that sooner or later the afflicted have to experience a life altering event — overdose, incarceration, getting kicked out of school, losing a job, getting kicked out of home, to name a few — that shocks them into lasting change. Our family, too, heard this advice from multiple sources while William struggled with his use of heroin and we struggled to cope and understand.
The problem is this. The rocks at the bottom are strewn with dead bodies, including William’s. Death is rock bottom. Anything else is just a serendipitous, albeit uncomfortable, landing on an outcropping on the way down. It may be a tough climb back. There may be other falls. But it’s not death.
There is good news. Recovery is possible. There are currently 23 million Americans in long term recovery. The bad news is there are also 23 million Americans suffering from addiction – only 10%, 2.3 million are in treatment. Our treatment system is bigoted, ignorant, inept, broken and corrupted by greed.
I have recently come up with the idea of writing a letter to everyone who helped treat William along the tortuous descent to his rocky demise. I want to ask them whether his death has given them any cause to reflect upon his treatment. If so, what have they learned? Big ideas or tiny changes in practice? What change might they like to bring about so that others might not only avoid his fate, but actually entertain a productive lifelong recovery?
My suspicion is that very few, if any, have reflected much on William and his treatment. Given a lack of time or effort devoted to reflection, I suspect precious little, if anything, has been learned. I am talking about good, well-intentioned people who have dedicated their lives to important work. But is it work so trapped in orthodoxy of practice, work so mired in bureaucracy, that it leaves little time for introspection? How much are those who treat substance use disorder just like those they hope to cure, repeating the same behavior over and over? We ask addicts to look at what they do. We need to ask treatment providers to take a harder look at what they do. Or how about, just a look.
Recovery is like a pinball game. Up at the top somewhere, protected by bumpers and barriers is a target, lasting recovery, hit sometimes by good luck, sometimes by good management. Your ball may land in a hole temporarily and then get spit back into play again. That’s Emergency Rooms or the court system. Points off for the court system. You might get lucky and hit a treatment gizmo that puts two balls in play — one for substance use and one for mental health issues. Your ball may just get swallowed up for a while before reappearing somewhere by surprise. That’s insurance coverage. Or relapse. Points off. The ball may disappear down a hole until it pops up in the starting mechanism. You pull back, let go and start over. Inpatient or outpatient. Or relapse. Points deducted. Up toward the top are some flippers to keep you in play. Methadone. Suboxone. Side bumpers bounce you repeatedly into the center of the game. 12 Steps. DO NOT TILT! The lights flash, the bells go off and you do your best to tune out the frenzy in a game slanted downhill. Over time too many balls roll through that last set of flippers and disappear. Rock Bottom. Game Over.
This is the game of addiction recovery as it is currently exists for you to play. I want to know why we don’t tilt the table? Why don’t we take the whole game and flip it on its end so that all the balls roll toward WINNER!
I can hear someone calling me a bitter, unrepentant enabler right about now. Unwittingly, or even knowingly, maintaining the status quo. I’m tilting the table. Family members are hardly the only enablers, however quickly blame may come our way. When physicians, medical schools, therapists, Twelve Step programs, insurance companies, pharmaceutical companies, inpatient and outpatient treatment providers, politicians, judges, drug courts, police, schools and colleges take a good hard look at themselves and ask how they enable addiction, how their actions and ignorance perpetuate it, then we’ll have taken a step toward a solution. We can’t expect answers and solutions when we resist even asking the questions necessary to solve the problem. We hear plenty about the limitations and susceptibility of the adolescent brain. My long experience as a teacher has made me profoundly aware of your potential: your willingness to question, to challenge, to innovate, to design, and most important, to speak up. The writer and lecturer Andrew Solomon reminds us “…we all have our darkness, …the trick is making something exalted out of it. “
I’M FLIPPING THE GAME! Who out there is joining me?