Thursday, January 21, 2016

Dear Senator Schumer

Next week the Senate Judiciary Committee will hold hearings on CARA - The Comprehensive Addiction and Recovery Act.  As we all know, things move slowly in Washington.  It is important that we all advocate for the passage of this act.  Below is a letter I wrote to Senator Schumer, one of my New York Senators and a member of the Judiciary Committee.

Dear Senator Schumer:

A little over a year ago my wife, Margot Head, and I spoke at a U.S. Senate Addiction Forum in support of CARA.  I write now to urge you to do your utmost to move that legislation through the Judiciary Committee and on towards a vote.

Having lost our son to heroin use, we are especially sensitive to the importance of CARA and any other legislation regarding Substance Use Disorder education, prevention, treatment and reform. 
I invite you to listen to our Forum presentation:  http://bit.ly/1zgE7O3

This past October I was invited by Dr. Nora Volkow to speak at a Recognition Ceremony for NIDA scientists and administrators.  You can read what I had to say at that event here:  http://bit.ly/1kpqwle

Finally, I was invited to write a guest blog on Dr. Volkow’s “Director’s Blog”.  That essay appears here:  http://1.usa.gov/1OwPNnD

I share all this with you to help you get a sense of the urgency needed in moving CARA along. Urgency that I hope you will impress upon Senate colleagues on both sides of the aisle.

If there is anything that Margot and I can do to assist you and your staff as we engage the plague of addiction, please know that we stand ready.
    
Many thanks for your kind attention to this epidemic, which feeds on silence.  Those of us who do not speak up are in some way ourselves afflicted with addiction. 

Sincerely yours –

Bill Williams

New York City   

Friday, January 15, 2016

Talk In Kent Chapel

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 eventoverdose, incarceration, getting kicked out of school, losing a job, getting kicked out of home, to name a fewthat 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 playone 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? 






  


Sunday, November 22, 2015

Cliff Rogers - In Memoriam

Marel Rogers, a classmate of mine at Kent School honored me by inviting me to say a few words about her husband Cliff Rogers and teaching at a memorial service for Cliff at their home this past Saturday, 10/17. It was a lovely service, with a small group of former students and former hockey players there. We gathered outdoors near a young maple tree planted to remember Cliff.
CLIFF ROGERS – IN MEMORIAM
I studied Greek for five years at Kent School. One sentence in to what ought to be a fond recollection of Cliff, I’ve already misled you. To employ the verb “studied” is errant, perhaps even grossly errant. I foundered, floundered, and flopped around - my head barely above water thanks to Cliff’s benevolence for four of those five years.
I began my encounter with Greek as a Second Former, an eighth grader. Since I’d tested well enough in English, the summer before my arrival Kent offered me the opportunity to begin studying Greek. Vain, flattered, woefully uncomprehending, and eager to please my parents, I said yes. (My parents got to say I was studying Greek.)
I began my first year under the tutelage of Basil Handford, a kindly English gentleman lured out of retirement to teach Classics at Kent. He did it well and eventually a dorm at the Girls School was named after him. There was one other boy in my Form taking Greek along with me. Willis Meigs, who become one of those lost in action at Kent a little over a year later for some now forgotten malfeasance. Together we were thrown into a class of 5th Formers (juniors) who were by then embarking upon their study of at least a third language. They had brains, maturity, and the experience of how one might go about learning a language on their side. I thought you simply learned the Greek alphabet, memorized the vocabulary and arranged the result the same way you would English. What were these declensions all about? And then conjugations? Plus whatever was in the back half of our School Greek Grammar text. I didn’t get it then. I can’t even remember what is was now. The class moved ahead swiftly while my immersion in the language was to sink into a whirlpool of frustration and despair.
Taking pity on me, Mr. Handford let me pass, or rather passed me along. Better perhaps had he exercised mercy and concluded the endeavor at the end of the year. The following year I entered a classroom in the basement of the Schoolhouse, took my seat at a large table presided over by Mr. Rogers (called Buck by everyone else – why I was still to learn) and continued my Greek experience.
Cliff was quick to discover, indeed he may have already known, that my Greek experience required extensive remediation. So began a lengthy period of tutorials to bring me up to speed. I never really gained full momentum over the next four years despite Cliff’s patience and encouragement. Herodotus, Thucydides, Sophocles, Euripides, Aristophanes, the New Testament, Plato and Marel all sped by in the academic passing lane. 
I exercised my speed to much better effect running and skating. I am sure I am one of the very few, if not the only one, to experience Cliff in the Greek classroom and Buck on the ice. The ice, for me, was a far less slippery milieu than the Greek classroom. On the ice I worked hard to get noticed, as opposed to slumping low at that Schoolhouse table lest I get called upon. Let me be clear. The Kent hockey franchise was not going to be built around me. That was left to the likes of Clai Carr. I depended on speed, hustle, and scrappiness – learned in part by observing my friend, and soccer captain, the aptly named Puck Purnell.
Buck appreciated that scrappiness, grit if you will, and ultimately I got to play on the team he coached. Upon reflection, as I look back on my classroom experience, I think he may have appreciated me as a storyteller. Given passages to translate on quizzes, tests and exams I’d look for recognizable words. Or near recognizable words, since those nasty declensions and conjugations can throw one off. I’d take what I recognized (I had at least studied for vocabulary tests over the years.) and cobble together a “translation”, which in all truth was just a story. I could give each of you words like Xerxes, ships, victory, arrows and arrogance and I’m sure you too could come up some version of how a cocky Xerxes sailed his navy to victory through the pass at Thermopylae despite a hail of Greek arrows.
I did get better over time, if not at Greek, at storytelling. I know not how, but I stumbled upon an entire section in the Kent School library that had translations of most of what we read in class. I could actually compare notes, Cliff notes if you will, of English translations on the one hand and the largely incomprehensible Greek held in the other hand. Along with my battered Greek lexicon, its spine rebound in red tape, I still have a number of Greek texts with translations of some sort scribbled above the Greek. Today I can decipher neither those scrawls nor the Greek below.
Now a longtime teacher myself, I’ve learned well that the important lessons we take out of a classroom go well beyond the details being parsed at any given moment. Because I had a wise, patient teacher I may never have comprehended Greek grammar, but I did absorb something of Greek literature.
The storyteller in me became a theater teacher and director. My students and I have worked on productions of works by Sophocles, Aristophanes and Euripides, a particular hero of mine. There is no way anyone could have known in the early 60’s that a faltering scholar would someday lead students to explorations of Antigone, The Birds, or The Bacchae. Was my teacher then aware that he was even planting a seed that would come to fruition decades later? I’d like to think that at least some of what I learned then – not about Greek, but about good teaching, manifested itself in my own work.
I still play ice hockey. Still dependent on a hustling, scrappy style – while watching far younger players speed by in the passing lane. One lesson from the ice remains clearly etched by in my mind and in muscle memory. Buck taught a way of stopping and crossing one foot over the other so that one could quickly shift direction and gain momentum going the opposite way. I still do that. Though reminded of him and grateful when I’ve worked on Greek plays, it’s that simple stop and shift that brings him to mind often when I’m on the ice. Maybe because a stop and a shift in direction is also part of growing up. Something he helped me with.
XAIRE – BUCK
XAIRE - CLIFF 
Bill Williams
10/17/15
P.S. XAIRE is one bit of Greek I do remember. It is simply "Hail" or "Farewell".

Tuesday, November 3, 2015

Address at NIDA Staff Recognition Ceremony

On Friday, October 30th, 2015 I had the honor of addressing the Staff Recognition Ceremony of the National Institute on Drug Addiction, a division of NIH.  My remarks follow.


Thank you Dr. Volkow and Jack Stein for inviting Margot and me to be here with you today.  The prospect, and now the reality, of being here to speak is both thrilling and humbling.  My scientific credentials are scant.  Fifty years or so ago I was a psychology major in college.  At a time when I ought to have been studying the intricacies of limbic system function my own limbic system was singing a bewitching Siren call of “Wine, women and song.” I recall little, if any, prefrontal consultation or debate over the matter.  If you like you can think of my college career as a primitive field study in brain maturation.  The results of that study have certainly never been published and stand before you now excited at the opportunity to speak, still struggling to comprehend brain science, not even daring to employ numbers and statistics before such a celebrated body as this, especially as the sample size in my field study is but one.  I reiterate, humbled.  That said, there will be a small exception to my pledge about citing numbers and statistics a bit later. Wait for it.
I’m a teacher.  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.
Some of you are surely wondering whether I’m brave or just plain foolish to begin a talk to a room full of scientists with a declaration like that.  Be patient, I beg you.  Allow me a moment to do what I do so often, tell a story.  The story of what brings us here to you.  Our story.  The story of our son.
In early December of 2012 our 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 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 of therapeutic hypothermia 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.     
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 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 being here with you today. 
Since William’s death, 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 entertained the notion of assessing him for a dual diagnosis?  If only, when he 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 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 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.      
The writer and lecturer Andrew Solomon reminds us “…we all have our darkness, …the trick is making something exalted out of it. “  We’ve seen other parents and family members who have suffered loss establish scholarships, endow lectures, raise money for research, run softball tournaments, race marathons, ride bikes cross country, lobby for change, teach communities how to use Narcan, and share their wisdom and strength with others who are battling substance use disorder right now. 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.  There are lots of family stories out there. More than a few have come our way since we shared ours.  More than 2/3 of American families have been touched by addiction.  It is not inconceivable that 10% of us, the people in this room, as in the population at large, will have, do have, or have had a personal battle with substance abuse. 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.  We speak today for the multitude of families confronted by this plague in our time.
If we aspire to rise to the exalted we do so not by saying “If only,” but rather by asking “What if?”  That’s what so many of these families I describe are doing, asking “What if?”  “What if?” unlocks the door to change.  As Shakespeare’s clown, Touchstone, says in As You Like It, there is “much virtue in if.”
Peter Brook, one of the great theater people of our time wrote:
In everyday life, ‘if’ is a fiction,
In the theater ‘if’ is an experiment.
In everyday life, ‘if’ is an evasion,
In the theater ‘if’ is the truth.
When we are persuaded to believe in this
Truth, then the theater and life are one.
This is a high aim. It sounds like hard work.
To play needs much work.  But when we experience
The work as play, then it is not work any more.
A play is play.
Peter Brook could just as easily be talking about your work.  Allow me to suggest that the life of the scientist and the life of the storyteller share the common ground of “What if?”  When the day arrives, and I have faith that it will; when the day arrives that no longer calls for a talk like this, to a group like this, from a parent such as I, it will be because you have asked “What if?”  You will have employed your hopes, your dreams, and your imagination in a search for truth.  Please, I implore you, do not take the word “play” lightly.  I ask you, was it work or play when Galileo began tinkering - grinding and refining lenses before turning ever improved telescopes skyward?  The question in my mind is not “What if” but only “When?” will your work and your play, your play and your work help bring this plague of our time to an end.

Galileo and Shakespeare were both born in 1564, a scant two months apart.  The plague of their time was the Bubonic plague.  Shakespeare lost three sisters, a brother, and his son Hamnet to the plague.  Whenever one of the frequent outbreaks of plague occurred in England the theaters in London were shut down and actors were forbidden to tour the country for fear they would carry the disease.    In Florence plague victims were thrown into mass graves in the fields, forbidden burial in church cemeteries. Fences were thrown around the mass graves to prevent dogs from devouring cadavers, or worse, returning home with the bones of family members.  Our word quarantine is derived from the Italian quaranta gioni, forty days, a period of isolation imposed by Venetians on returning travelers.  Forty days was chosen because it was the same period of time Christ spent in the wilderness. The stricken were sent to plague hospitals, their homes boarded up with family members sealed inside.
Blame for the plague was laid on miasmas of swampy air, evil humours carried in the air, or earthquakes releasing poisonous fumes, the full moon, conjunctions of the planets, famine, fate, beggars, prostitutes, beautiful young women or Jews. Religious explanations abounded.  The sin of pride, sinful behavior on the part of all society, the wickedness of all people, a sign that Christ’s return was imminent.
As if the imminent threat of plague were not enough, Shakespeare and Galileo had to steer delicate paths in their professional lives.  Shakespeare had to contend with the Elizabethan court.  More particularly the Master of Revels who had the power of censorship over all that went on in the theaters and control of all those who aspired to perform at court.  Shakespeare maneuvered around the boundaries well, sensing when to flatter and when he might be subversive. Prejudice against actors remained.  Besides being disease carriers, actors were discriminated against for being prostitutes, thieves, beggars, having loose morals, indulging in vices and distracting the Godly from reality.
Galileo had to deal with the Papal court in Rome.  While successful at winning the support of patrons over the course of his career, he was less deft at contending with a court filled with intrigue and adherence to religious dogma about the nature of the universe.  Galileo unintentionally alienated a former supporter, Pope Urban VIII, was tried by the Inquisition, was found "vehemently suspect of heresy", and spent the rest of his life under house arrest.  I said earlier that myth is more potent than history.  I did not say this is always a good thing.  Galileo spent the end of his life under house arrest for attempting to suggest in a careful and delicate manner that his observations refuted long held religious dogma.  The Bible, to be specific.  Whatever Galileo discovered and believed, the sun in Rome still revolved around the center of the universe, our planet Earth.
Why do I mention Shakespeare and Galileo?  Because, over four hundred years later, too little has changed.  The scientist and the storyteller are still regarded with suspicion, still negotiating treacherous territory.   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, LBGT 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.  We freely call the sufferers:  lushes, alkies, disturbed, acid freaks, wastoids, boozers, juicers, scary, tweakers, 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, psychonauts, 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.  Look at the accusations of bad character heaped on artists like Philip Seymour Hoffman and Robin Williams.  Like dogs digging at the graves of Italian plague victims, our country loves to feast on the misfortunes of performers and other celebrities suffering substance use problems.       
Like the victims of any plague addicts and their families are confronted first and foremost with the stigma surrounding the disease.  Judgment, scorn, censure.  At the beginning of September Hillary Clinton published an Op-Ed piece in the New Hampshire Union Leader outlining her proposals to fight our drug epidemic. Here are some of the responses to what she wrote:
“Let the herd thin itself. Why should the taxpayers always pay for all the screw ups in the country?”

“An addict can QUIT doing what they are doing, our friend can NOT "quit" his brain cancer. It is a dire insult to everyone struggling with actual diseases to call addiction a disease.”

“I too am sick of hearing this called a "disease" - it cheapens real disease.”
I read another comment elsewhere about deaths due to addiction.  “Darwinism at work.” 
Ignorance, fear, entrenched dogma and bigotry are the order of the day in our country.  Especially in the world of addiction. The old order is threatened by the new, the old struggling to maintain its status. You don’t need me to tell you about the fools you encounter; about the battles you have to fight within the scientific community; about how difficult and dispiriting it must be to scrounge for funding. A grizzled veteran in the fight against addiction once told me, “Whenever funding gets tight in the addiction world we circle the wagons and shoot at each other.”
I’m sure you feel like Galileo when he wrote Kepler to say “…our teacher Copernicus, who though he be of immortal fame to some, is yet by an infinite number (for such is the multitude of fools) laughed at and rejected.
This past October 4th Margot and I joined 30,000 other people from all across the country to participate in The Unite To Face Addiction Rally on the national mall. The rally made history in part by declaring the event “The Day the Silence Ends.” No more will any of us tolerate or accept secrecy, shame and silence about the disease of addiction.  The tide IS turning.  The truth will trump myth.  

What if?  What if I propose making this day of well deserved recognition and celebration, this day, beginning now, a day to mark the time when the laughter from the fools ceases. If we can no longer tolerate secrecy, shame, and silence, then we ought no longer tolerate ignorance, bigotry, and entrenched dogma.  There’s a roomful of people right here doing wonderful work.  Work that deserves far greater recognition.  Work that needs to move as quickly as possible from your labs to practical application.  Work that deserves to be swept along in the changing tide.  The time is now to bring the healers and the healed, the recovered and the recovering, the sick, the scientists and the storytellers together.  We can wait for leaders to effect change or we can be the voice of change.  We must teach the leaders.  WE must be the leaders. We can prevail.  We must prevail. We WILL prevail.

          



         
 


  

Friday, October 23, 2015

Baseball, Beer, October & Addiction

On Labor Day of 1955 my family moved to New Jersey.  That October, as I walked to the school bus a neighbor stopped his truck, leaned out the window and asked whom I was rooting for in the World Series, the Yankees or the Dodgers.  Nine years old, I tried to guess what answer would please Mr. Miller the most.  I guessed right.  Yankees!  Thus began a relationship that continues to this day, momentarily melancholy as it may  be after this season’s playoff loss to the Astros.  As a boy growing up in the 50’s and 60’s, there were Octobers of great excitement and happiness as Mickey Mantle, Roger Maris, Yogi, and all my other heroes walloped “Ballantine Blasts” out of Yankee Stadium, the House That Ruth Built (after beer baron Jacob Ruppert purchased the team).  Knickerbocker was the beer of the New York Giants and Schaefer a sponsor of the Brooklyn Dodgers.  The Schaefer sign on the Ebbets Field scoreboard would light up with an “H” or an “E” to help those scoring at the ballpark or at home.  Later the Mets arrived and adopted Rheingold as their official beer with their own glowing “H” & “E”.
October was always a time to follow ballplayers in their joy and despair.  At least until October despair became trivial three years ago when our son and brother, William, succumbed to what proved to a fatal heroin overdose. That loss brought my wife and me to the Mall in Washington DC this past October 4th.  We joined 30,000 other people from all across the country to participate in the Unite To Face Addiction rally.  The rally made history in part by declaring the event “The Day the Silence Ends.”  No more will any of us tolerate or accept secrecy, shame and silence about the disease of addiction. Celebrities from all walks of life were there to share their stories of recovery, to reinforce the message that recovery is possible, and to speak out against the stigma of the disease.  We were reminded again and again that there are 23 million Americans in long term recovery from alcoholism and substance use disorder.  Among those speaking was former Yankee (and yes, Dodger, Giant, and Met) Darryl Strawberry.  His struggles have been well documented, but there was Darryl looking fit and trim, speaking persuasively from the heart about his recovery and proud of the two recovery centers he has established.  A ballplayer offering a different kind of hope in October. 
Later, the rally included a photomontage of celebrities who lost their battle with addiction.  There was my boyhood hero, Mickey Mantle, bigger than life, again, taking one more swing on a giant screen. 
The following day was Advocacy Day.  Nearly 700 people from all over the country went to Capitol Hill to talk with Congressmen and Senators in the interest of making elected officials more aware and proactive in the fight against addiction in all its ghastly guises.  We were part of the New York delegation that spent time being well received in Senator Chuck Schumer’s office.
As we gathered outside the office for a quick “team photo” and goodbyes, I checked my e-mail.  There was a message from my friend Mark, also a Yankee fan and a bit of a baseball historian, letting me know that CC Sabathia had just entered an alcohol treatment program.
My mind went back to Mickey Mantle.  Then to Billy Martin.  The more I thought about it, the more Yankee names came up:  Dwight Gooden, Whitey Ford, Steve Howe, Jim Bouton, the Sultan of Swat himself, Babe Ruth, and once again, Darryl.  Men whose lives may have even been celebrated as real men who could drink hard and play hard at a time when there was less discrimination over a swing and a swig.  Men whose substance use was denied or protected, sometimes even by the sportswriters who sat at the bar with them. How many more Yankees are there I don’t even know about?  How many ballplayers all across the game?
Now there is one more.  But there is something different this time.  CC Sabathia is to be commended.  He’s not hiding.  To me he’s a hero for saying, “It hurts me deeply to do this now, but I owe it to myself and to my family to get myself right.”  No silence.  No shame.  Just honesty in the first important step on what one hopes will be his road to recovery.  Honesty in making that first step more important than anything else in his life.  We owe him the same understanding and compassion we would offer him if he were dealing with any other life threatening disease.  Not everyone believes that, of course.  Our culture remains primitive and judgmental when it comes to alcohol and substance use disorder.  Someday soon one hopes we see he is the kind of role model our kids need, a new kind of October champion.
CC is helping spread the message we heard on the Mall.  The silence needs to end.  The silence will end.  30,000 people were there to change the attitude of America about a dread disease. We will spread our message. We WILL prevail.  If we build it they will come.  Thanks for your help CC.    


      

Thursday, September 3, 2015

Overdose Awareness Day - A Father's Story

The following post was written for Phoenix House for Overdose Awareness Day, August 31st, 2015.  It appeared originally on the Phoenix House website.   http://www.phoenixhouse.org/news-and-views/our-perspectives/overdose-awareness-day-a-fathers-story/  It was also broadcast that evening on WJFF - Public Radio, Jeffersonville, NY - 90.5  FM.


It has been more than two and a half years since my son, William, succumbed to a heroin overdose.  His last time in the emergency room was certainly not the only time his addiction had brought him there.  Like Russian Roulette, risk of death is inherent in any heroin use, at any time.  William knew this, but simply being aware was not enough to save his life. This time, his disease fatally overcame his awareness.   
Today is International Overdose Awareness Day. Its goals are laudable— to raise awareness of the risks of overdose and reduce the stigma of drug-related death. History has shown that public awareness toward stigmatized illnesses is an important step toward reducing fatalities.  And yet, when I asked several friends –mothers whose children have battled drug addiction, individuals in recovery – about their reaction to the day, some expressed skepticism about the effectiveness of dedicating one day to overdose awareness.    
As one person remarked “All these ‘days.’ … [Overdose] happens Every Single Day.”  She went on to tell me how she’d been brooding over New York City’s 12 unfortunate deaths from Legionnaire’s Disease—each one a tragic loss—and the intensity of the media coverage and the City’s response to the crisis. However appropriate the reaction was, when compared to the response to our opioid epidemic, which has claimed magnitudes more lives—“It speaks volumes, or rather shrieks volumes,” she said.

I share their skepticism of what a single day can do.  This is, for example, the third time Overdose Awareness Day has been recognized since William’s death, and I’ve never even known about the day, much less done anything about it, as active and aware as I consider myself to be.

To be sure, others I spoke with mentioned hope and the need to reduce the stigma surrounding addiction:  “Only when the uninformed public realizes that anyone can suffer with this disease, will the stigma lessen,” noted one.  Another wrote, “Fighting the stigma honors the memory of those who have died – but it also goes a long way in helping those who are still in the fight.  And fighting the stigma is a triumph even if one mind is changed.”

Yet another mother wrote:  “Of course, this is a time that we remember all the beautiful lives lost.  This day is also the perfect day to encourage those still struggling with the disease of addiction that there is hope, to celebrate those who have found recovery, to talk about recovery in general, and to share the good stories too, as they represent a huge source of hope, strength and support for so many.”

Those whose lives have been touched by addiction get it.  They understand how we need to confront addiction and how much work it will take. But what about our politicians?  What about our leaders?  Where are they?


I recently happened upon an essay by a high school classmate and good friend of mine, Professor Tom Van Nortwick.  Tom has just retired after a most distinguished career as a classics professor at Oberlin College.  In his essay, he mentions the plague of Athens in 429 B.C.  The Greek historian, Thucydides, a rare survivor of the illness, wrote about the sufferers.  As Tom translated in his essay:

Once stricken by the disease, victims lose all hope.  Those who go to take care of their friends are destroyed for their trouble; those left alone out of fear of infection die of neglect, desolate.  Wrapped in a cloak of illness, the social structure of Athens warps:  “For the catastrophe was so overwhelming that men, not knowing what would next happen to them, became indifferent to every rule of religion or of law”(2.52).

Thucydides could just as easily have been writing about the suffering of our drug-afflicted and the disregard for them that has been the acceptable norm in our country for far too long, certainly both before and after the founding of Overdose Awareness Day.  When it comes to addiction, we as a country remain as ignorant, fearful, and reluctant to act as Athenians living in 429 B.C. were about the plague.

During that same year, Pericles, the great leader of Athens, spoke about the example of the democracy he led in Athens and of the power of the people to create change:
           
Taking everything together then, I declare that our city is an education to Greece, and I declare than in my opinion each single one of our citizens, in all the manifold aspects of life, is able to show himself the rightful lord and owner of his own person, and to do this, moreover, with exceptional grace and exceptional versatility.  (2.40-41)

Where is our Pericles?  Where is the leader, or leaders, who will ask more of us, as individuals, and most importantly, as a society?  Where is the leader who will lead us in our battle that requires “exceptional grace and exceptional versatility?”

For me the best way to honor the day, to honor the dead, to honor the recovered, is to sound the call for a leader, to demand more of our leaders.  This year cannot be soon enough to begin long necessary change.  We need someone to recognize that vast numbers are dying daily. Someone who will make International Overdose Awareness Day the day that begins the end of all the Every Single Days. A day that is not one more drop in the bucket, but truly turns the tide.