I was invited to speak at this event. Here are my remarks:
August 19th, here in Binghamton. We must never underestimate the significance of this day in our ongoing struggle with drug deaths and the despair and mayhem that follow in their wake. Why do I find this event so notable?
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. 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, 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. 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.
Perhaps the most difficult moment of my life was offering William’s eulogy. I ended with a pledge from his mother, Margot, his sister, Elizabeth Hope, and me, a pledge that brings me here with you today. “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.” My final words were a quote from Shakespeare, “Action is eloquence.”
As we approach the eleventh anniversary of William’s death, I’ve come to realize that taking action to effect change presents a formidable challenge. We face the difficult process of changing hearts and minds. That means engaging with minds that have no heart, engaging with hearts that have no mind, and engaging with those who have neither but believe they have the best of both. It can be daunting. We must not back off.
In 2014, on the second anniversary of William’s death, Margot and I spoke at a U.S. Senate Forum on Addiction to help advance CARA, the Comprehensive Addiction and Recovery Act. It should, however, come as no surprise that progress through the work of our elected officials is glacial. It would be another two and a half years before that act was passed. In my talk that day I quoted a lyric from the musical “1776” when John Adams says of Congress, “We piddle, twiddle, and resolve -Not one damn thing do we solve”. Waiting for presidents, governors, mayors, legislators, town councils, and government large and small to take effective action is frustrating and maddening. While politicians debate endlessly, people meet their end in staggering numbers daily.
In the two years before we spoke that day, we’d met other parents whose lives, like ours, were scarred by the collateral consequences of addiction. They bravely moved ahead, establishing scholarships, endowing lectures, raising money for research, raising money with softball tournaments and golf tournaments, and sharing their wisdom and strength with other families currently battling substance use disorder. By the time we spoke, William’s sister, Elizabeth Hope, had just completed a half marathon and raised nearly $11,000 for the Where There’s A Will Fund, which we established at the time of William’s death. Families weren’t negotiating and debating about what to do. They were taking action.
It is my fervent belief that the real hope in our fight against addiction in this country lies with the individuals, the families, and the community groups leading the way. Groups like Hope Not Handcuffs, BIGVISION, Drug Crisis in Our Back Yard, The Harris Project, Safe Stations, The Kingfisher Project, Community in Crisis, and of course, Truth Pharm – to name but a few. I mention these groups because I happen to have had personal interactions with each of them. How many hundreds, even thousands of such organizations are spread across our nation doing good work in relative obscurity? Read The Least of Us by Sam Quinones, Raising Lazarus by Beth Macy, and Undoing Drugs: How Harm Reduction Is Changing the Future of Drugs and Addiction by Maia Szalavitz and you’ll get a broader understanding of what is being accomplished at the grassroots level all across our nation.
Allow me to provide three quick examples. Eve Goldberg’s son Isaac battled addiction. During a period of sobriety, Isaac told his mother about the frustration he felt in not being able to connect socially with other sober peers. Why, he lamented, did sobriety have to be so socially restraining? At age 23 Isaac accidentally overdosed. One year later, in January 2015, Eve founded BIGVISION in New York City with a nationwide mission. Eve is committed to helping young adults in recovery learn to live fun, meaningful, sober lives by providing entertaining, engaging events and building a community where the BIGVISION “family” can hang out in a cool, hip, substance-free environment. When I first met Eve, BIGVISION operated out of a tiny Manhattan office. Today they occupy a 4000 square foot clubhouse space, conveniently located on East 49th Street in midtown Manhattan. Young people in recovery get to participate in yoga, knitting classes, trapeze, kayaking on the Hudson, ice skating, and improvisation workshops, to name just a few of the sober activities they enjoy together. BIGVISION is an inspiration and a model for replication elsewhere.
Julie Pisall’s daughter, Rebecca, was shot and killed due to her heroin addiction. Rebecca’s organs were donated to help save other lives. When she was in high school Rebecca found and saved an injured bird, a Kingfisher. When no one else thought it could be saved, Rebecca found a way to rescue it and save it. For a high school writing assignment, Rebecca produced an essay about the value of all life and the importance of perseverance. That essay became the inspiration for The Kingfisher Project in 2014, a monthly radio show on Radio Catskill, an NPR station devoted to raising awareness about the drug crisis, both locally and around the country. I’m fortunate to host the show. This past March Alexis Pleus was my guest.
In 2019 Claire Miller lost her younger brother, Ethan, to fentanyl poisoning just nine days before his 22nd birthday. Ethan thought he was simply using Xanax. The loss of Ethan pushed Claire to study architecture at Boston Architectural College. This spring she completed her master’s degree as an interior architecture design student. In her final semester, she started 6th Sense Design, which focuses on the design of substance use disorder recovery environments. She is currently working with a South Florida-based nonprofit to develop a recovery residence for women. Her firm belief is that well-designed spaces should be accessible to all populations and align with recovery programming to yield the best possible outcomes.
All the initiatives I’ve described have two things in common. They are splendid examples that action is indeed eloquence. They were all initiated by and are now led by women. It’s time for we men (yes, there are some here) to step up and do better.
Why did I begin my remarks by declaring this day significant and notable? A trail, any trail demands regular and continuous use. In other words, traffic. Maintenance. Left untended it will deteriorate and ultimately disappear.
On the other hand, with enough use, a trail becomes firmer, broader, better marked, and easier to navigate. It becomes a route, a road. Easier to traverse, it comes upon other trails, eventually forming a network. Ultimately, it can become a highway. In our case it is truth that clears the underbrush to cut a trail, truth that firms the path, truth that travels the trail and broadens it, truth that discovers connecting trails to form a network, and truth that paves the highway to success. Today again, we join to reinforce the trail with truth. We must never underestimate the importance of truth in strengthening our mission.
Where does this truth come from? We can’t all have the inspiration of an Eve Goldberg, the dedication of a Julie Pisall, the creativity of a Claire Miller, or the tenacity, passion, and leadership of an Alexis Pleus. What we can all do is to share our stories. Our stories are the truth that creates change. As actress Emma Thompson said, …sometimes, human beings need story and narrative more than they need nourishment and food.”
Today is important because we gather together to remind ourselves of the value and importance of our stories. We don’t always know who we will help, or how. Sometimes we share our stories stuffing envelopes, cutting carrots in a soup kitchen, or providing transportation to those in need. Truth and action might sometime feel unheard and unseen, pedestrian and unremarkable. Yet with patience, persistence, and perseverance- they can reveal themselves at the most unexpected moments in the most surprising of ways.
I conclude with a surprise in our family story. In the late winter of 2018, four years after William’s death, 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 respond 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 a 2014 memorial service offered by Columbia medical students.
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, several Columbia medical students, dissatisfied with the classic print 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 to create a digital anatomy manual. As Dustin Tetzl, the medical student who had the idea for the manual stated, “The manuals have step-by-step instructions that show you what you’re supposed to do in lab, but the manual we used had lots of drawings and no photos. Your cadaver never looked like the idealized drawing. It was frustrating.” The Columbia Medicine Newsletter reported Tetzl and other students, ironically contemporaries of William, were “Soon… in the anatomy lab 12 hours a day, every day, dissecting a cadaver and taking tens of thousands of photos.” Their work was edited by the course director and immediately put to use. “First-year medical students used it as their primary in-lab dissection manual throughout the fall semester, with an iPad at each cadaver table as they did dissections.” Now, the Columbia University Clinical Gross Anatomy Dissection Manual is available to anyone on iBooks, titled A Gross Anatomy Dissection Manual for the 21st Century. The fully interactive multi-touch book contains simple step-by-step instructions accompanied by photos of actual dissections, a complete glossary for every bold term, and quizzes throughout. It is used by all of Columbia’s first-year medical and dental students.
Already, over six thousand medical and dental students have encountered William profoundly in a way we never imagined. A friend of mine suggested that all those students had seen more square inches of William in a semester than I had in his 24 years.
We must never forget the stories each of today’s tombstones have to tell us. They guide us and sustain us on the Trail of Truth. As writer and speaker Andrew Solomon tells us: “…we all have our darkness, and the trick is making something exalted of it.” Once again, we set out on the Trail Of Truth toward the exalted. We WILL prevail.
