Testimonies of a Mother and Father

12/26/2014

On December 2, 2014, Margot Head and Bill Williams, parents of William Head Williams, who died at age 23 from an accidental overdose of heroin, each presented Senate testimony in support of the Comprehensive Addiction and Recovery Act of 2014. Video of their testimonies is available at https://www.youtube.com/channel/UCOfmklxbMw2jZt_7h07ejmw. Bill Williams' testimony is shared here with his permission.

With Thanksgiving barely behind us we would do well to recall that 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 were thus prepared to treat addicts. Offenders could be marked or branded with a 'B' (blasphemer), 'D' (drunk), 'F' (fighter), 'M' (manslaughterer), 'R' (rogue), and 'T' (thief). Or an 'A' for adultery, such as Nathaniel Hawthorne's fictional Hester Prynne wore.

Years of being shunned and rejected as an outcast by her community, years of living alone on the outskirts of town, allowed Hester to recognize the ridiculous legalisms of her time and to rise against them.

We've progressed little since the setting of The Scarlet Letter in 1642 or its publication in 1850. The Scarlet Letter of our time remains an A, for Addict. We still fear the disease in our midst, much as the Puritans feared demons, witches and other spirits of darkness. We are ashamed to admit we have the disease. We are afraid to talk about it. It feeds on silence. Uncomfortable and unable to address this disease directly, we shun, punish, and treat those afflicted with substance use disorder with anything from indifference to outright contempt, all the while hiding behind our legal system to do so.

In our time, blessedly, there are those like Hester Prynne, who are resilient and have progressed well beyond their circumstance. They are leaders who beckon us to follow. They reject the shame of stigma and rejoice openly in their recovery. They are an impressive, sometimes anonymous legion, in long-term recovery. They provide ample evidence that the time to move from the 1600's, the time to live, not as we've been but as we can be; that time is upon us.

Our son, William, died two years ago on this very date, December 2nd, 2012. Almost two years prior to that, we became aware that William was using heroin. At the time he was already seeing a psychotherapist. Over the next two years we added 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, despair, sometimes hopeful during intermittent periods of sobriety, and always filled with the apprehension of misfortune. That apprehension became fact when William accidentally overdosed shortly before his 24th birthday. Six weeks of comatose and/or heavily medicated hospitalization followed before the ultimate realization that William was consigned to a persistent vegetative state.

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 filled with collateral consequences. One parent posted recently: "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 two years. As everyone here knows, 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.

Yet, a day like today gives us hope. We have met other parents whose lives, like ours, are scarred with the collateral consequences of addiction. We've seen them establish scholarships, endow lectures, raise money for research, share their wisdom and strength with others who are battling substance use disorder right now. This past Saturday William's sister, Elizabeth Hope, ran a half marathon and raised nearly $11,000 for the Where There's A Will Fund, a fund we established at the time of William's death. Families are already doing at a grassroots level what the Addiction and Recovery Act will do on a national scale. Urgency is in the air. I'm reminded of a lyric from 1776, the musical. When John Adams is talking about Congress, he says, "We piddle, twiddle and resolve, not one damn thing do we solve." It's time to solve.

Last March I spoke at the organizational meeting of a group in New Jersey, now known as Community In Crisis. After the meeting I chatted briefly with the local police chief, Brian Bobowicz. In June, at the first public meeting of Community In Crisis, with several hundred people in attendance, Chief Bobowicz was generous in saying he'd learned something from me. He'd learned that substance use disorder is a disease. He still has to arrest people. But now he and his department also provide people with a pamphlet giving them advice on treatment options, legal resources, drug court, family assistance and more. They are now trained to administer Narcan. His compassionate work is a model to be emulated.

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. The night before the organ harvesting was scheduled two uniformed NYPD officers showed up at Will's bedside, Brian and Edwin, beat officers who knew and liked William, who cared for him and helped him out, who wanted to see him one last time. I rode home that night in their squad car.

There are good people out there. People who understand. People who care. People who vote. People who want change. Policemen, lawyers, nurses, doctors, teachers, community organizers, parents, children and friends. They need support from our elected leaders. 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 the epidemic in our midst.

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, telling him 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 a gift of his body, an anatomical donation to the College of Physicians and Surgeons at Columbia University.

Two years ago our vigil at William's bedside ended at 12:29. At 12:29 today, please take a moment think of William. Make it a moment of hope. For his sister, named Elizabeth Hope. For his niece, named Josephine Hope. For our family a new vigil begins, as we await the passage of the Comprehensive Addiction and Recovery Act of 2014. Thank you. We WILL prevail.

1. Regarding Puritan branding (See Jack Lynch - http://www.history.org/Foundation/journal/Summer11/prison.cfm)