Saturday, December 10, 2016

WILL TRUMP DELIVER?

At the beginning of this week I wrote Rachel Maddow.  Since the night of the election, I'd been thinking about the relationship between drug addiction and alcoholism and locales where Donald Trump prevailed. I had not considered the suicide rate.  Should have.  Here, in part, is what I wrote to Ms. Maddow:


"If you take a map of those places where Trump scored, or where Trump changed a county from blue to red and then overlaid a map of opioid abuse and drug deaths, I suspect you would find a startling congruence.  I’m suggesting that a significant number of Americans in dire straights have taken to A) narcotizing themselves to relieve the stress they feel and B) voting for Trump as another way to relieve that stress.  Have someone on your staff, or even better you (where you would get the time I cannot fathom – but it’s worth it) read Sam Quinones’s book Dreamland – The True Tale of America’s Opiate Epidemic.

It’s no secret that Rob Portman and Tim Ryan both represent Ohio and both have done influential bipartisan work to address the epidemic our country faces.  Hillary Clinton got out in front of understanding the epidemic in New Hampshire and offered the most comprehensive and thoughtful plan to fight addiction.  I’m not sure she caught on to what I’ve come to suspect, addicted America is Trump’s America.
Check it out."

Today, thanks to a friend, I got to read this article by James Hohmann.  As I said to Rachel Maddow, "Check it out!"



Time will tell on whether Trump delivers anything of substance to people with these afflictions in these afflicted areas.  It will already be too late for those who have completed suicide.  Will he and his team recognize that our environment is threatened not only from the outside, but from our insides and from what we put inside ourselves?  

Thursday, December 1, 2016

Action Is Eloquence

December 2nd is, sadly, the fourth anniversary of William’s death.  At his memorial service Elizabeth, Margot 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. “  The eulogy concluded with a quote from Shakespeare, “Action is eloquence.”

We have worked diligently in the past four years to honor our pledge.  We have had the loving support of friends and family.  We have met many others who have suffered loss as we have.  We have met and been supported by new friends who are strong advocates for addiction education, prevention, treatment, recovery, criminal justice reform, research, and fighting the stigma surrounding the disease.  Eloquent all.

Since the founding of the Where There’s A Will Fund we have let the fund grow while we’ve attempted to identify those organizations whose work we believe has the most informed impact in the fight against addiction. This year, for the first time, we have made some modest grants from the fund.  As I wrote to each organization yesterday, “Our means are finite, our gratitude for you and your work boundless.” Because of the generosity of so many of you we have been able to recognize:

The Partnership for Drug-Free Kids

The Addiction Policy Forum

Facing Addiction

Friends of Recovery – New York

I encourage you to go online get a sense of the fine work these people do.

You can go here to get a sense of some of our work - our testimony before the House Bipartisan Task Force to Combat the Heroin Epidemic: Families Impacted by Addiction  5/18/16

 
Our hope is to continue to be able to support these organizations as generously as possible in the future.  We will continue to work with them, advising, speaking, writing, participating in conferences and workshops, all the while benefitting from their wisdom and guidance.  We will always remain alert for new opportunities to recognize outstanding organizations. 
   
For those of you who feel so inclined you may support the Where There’s A Will Fund by contributing to:
                                                             Community Funds, Inc.
Fbo The Where There’s a Will Fund

The New York Community Trust
909 Third Avenue
New York, NY  10022


Thank you all for your support in all its forms.  Action remains eloquent.


    


Tuesday, November 15, 2016

Hallelujah!

A month ago I read an article in The New York Times by Michael Paulson, ‘Hamilton’ and Heartache: Living the Unimaginable.  It told the story of Oskar Eustis, director of the Public Theater in New York City, who lost his sixteen-year-old-son Jack two years ago.  http://www.nytimes.com/2016/10/16/theater/oskar-eustis-public-theater.html   Part of the article read:
“An MP3 arrived by email, hours after Jack’s death.  It came from Lin-Manuel Miranda, a new arrival to the Public fold.  It was a demo recording of “It’s Quiet Uptown,” the song from “Hamilton” describing Alexander Hamilton, and his wife, Eliza, as they grieve the death of their 19-year-old son, Philip:
‘There are moments that the words don’t reach
There is suffering too terrible to name
You hold your child as tight as you can
And push away the unimaginable
The moments when you’re in so deep
It feels easier to just swim down.’

“There is nothing you can say,’ Mr. Miranda recalled thinking. “And yet, I had a song about this. So I wrote to him saying, ‘If this is useful, then lean on it, and, if not, delete this email.’”

“Mr. Eustis and his wife found it useful. “Every line of ‘Quiet Uptown’ feels like it’s exactly correct to my experience,” Mr. Eustis said. “It was the only music we listened to for a long time, and we listened to it every day, and it became a key thing for the two of us.”

Earlier this fall my wife, Margot, and I had the sublime opportunity go to “Hamilton”.  We’d listened to the recording beforehand to familiarize ourselves with the show.  We remained unprepared, however, as “It’s Quiet Uptown” and the performance surrounding it moved us to tears.  Like Alexander Hamilton, like Oskar Eustis, we have experienced “the suffering too terrible to name”, the death of our son, William just after he turned 24.  We’ve had to “push away the unimaginable”, we know the just wanting to “swim down.”  I reacted the way Oskar Eustis and his wife did, listening to the same music every day, listening to it for a long time.
   
In the early afternoon of December 2nd, 2012, Margot, our daughter Elizabeth Hope, and I were squeezed into a small hospital room around the bedside of our son and brother William.  We’d spent the prior six weeks at his bedside, hoping for a miracle recovery; a brain deprived of oxygen after his heart had stopped beating for too long.  His heartbeat was restored by EMS personnel. Over the course of those six weeks, however, his damaged brain continued to wither.  His heart labored on as other body systems began to suffer from the stress they’d endured.  The end imminent, William was on morphine to guarantee he would suffer no pain.   The irony that a morphine derivative, heroin, had initially caused William’s heart to stop beating long enough to set off the sequence which would end with his imminent death was not lost on us.

We held William, caressed him and kissed him until he left us.  Moments later Elizabeth pulled out her cell phone, laid it near William’s head and played a song.  We’d played lots of music for William during those six weeks, especially anything by his favorite, Stevie Ray Vaughn.  Sometimes we’d sung to him, including “Happy Birthday” on November 18th, toward the end of the ordeal, as he turned 24. The song was new to me, Antony and the Johnsons' “Thank You For Your Love.” https://www.youtube.com/watch?v=I-Xdm5yS6PY I heard it and asked Elizabeth who the artist was and if she would play it again.  When we arrived home I found the song on You Tube and began playing it repeatedly.  I explored a bit and came across Antony’s cover of Leonard Cohen’s “If It Be Your Will”. Instantly an old favorite, Cohen’s “Hallelujah,” compelled me. I listened to it over and over and over, lying in bed with my laptop, listening first to a gravelly Leonard Cohen himself singing it, then testing the renditions of all the artists I could find.  Sampling them all to distinguish comforting subtleties.  Listening obsessively, interrupted only by sporadic returns to “Thank You For Your Love.”  Ultimately soothed by repetitions of K.D. Laing’s rich offering, my ritual continued in the two weeks leading up to William’s memorial service.  https://www.youtube.com/watch?v=P_NpxTWbovE  I have no memory of when the rite tapered off.  I do know that I come back to the music when I need to, even finding something about the hateful embrace of heroin in all of Cohen’s lyric, most especially: “… love is not a victory march.  It's a cold and it's a broken Hallelujah.”

Oskar Eustis’s description of his experience had, and has, a visceral similarity. “For me, the beautiful thing about ‘Quiet Uptown’ is, it serves a ritualistic function — it takes us into the grief, and then it takes us out of it,” Mr. Eustis said. “And there’s nothing, there’s no other ritual that I know of, that can do that for me.”
For me the music takes me back to that moment when hope for William flickered, even though I knew he was gone.  Death arrived before hope’s exit.  As Lin-Manuel Miranda wrote, “We push away what we can never understand, we push away the unimaginable.” Somehow the chance to say, “Thank you for your love,” the celebration inherent in the word “Hallelujah” gets me into and out of, or at least a bit further removed from, the grief that is always a part of me.

For four years now a prolonged six-week anniversary of events darkens even more the fall season of gathering darkness.  This year the struggle and the ritual have been heightened by Leonard Cohen’s death.  “Hallelujah” has sprung forth from Kate McKinnon, a children’s choir, Facebook posts in honor of Leonard Cohen.  Is it quiet now where we live uptown on New York’s Upper West Side?  At the least, perhaps calmed by Lin-Manuel Miranda’s magnificently comprehending song and an unknown, now discovered bond with Oskar Eustis.

This November 18th there will be a “Hallelujah” for our lost boy/man, as Elizabeth, Margot, and I continue “working through the unimaginable”, sorely missing our moment to sing “Happy Birthday” to William.   




Tuesday, August 30, 2016

Letter to Lorne Michaels - International Overdose Awareness Day

I sent the following letter to Lorne Michaels, producer of Saturday Night Live.  In April SNL aired an offensive parody of a commercial for a product called "Heroin AM".  I wrote Mr. Michaels and informed him of my displeasure at the time.  I received no response.  I will continue to pursue him until such time as I receive a proper response.  Here is the letter I wrote for International Overdose Awareness Day.





William H. Williams
220 West 98th Street
Apartment 5-A
New York, NY  10025


August 31, 2016


Mr. Lorne Michaels
Saturday Night Live
30 Rockefeller Plaza
New York, NY 10112


Dear Mr. Michaels:

On April 17th of this year I wrote to you expressing my dismay over SNL’s ill conceived “Heroin AM” satire.  Here is the link to what I posted on my blog to help refresh your memory:


I was not alone in my disappointment, as you must be aware.  My friend Marcia Lee Taylor, President and CEO of Partnership for Drug Free Kids wrote you, along with many others, including numerous readers of my blog.  That blog piece continues to attract attention daily.  As of this writing, there have been 21,685 hits. Clearly you struck a raw nerve.  Nor has the pain subsided. 
Why do I write you now?  August 31st is International Overdose Awareness Day.  It seems an appropriate day to remind you that the epidemic, which kills 129 Americans daily, has not diminished.  If anything, it gets worse.

As I’ve reflected with friends wiser than I on my initial letter to you, I’ve tried to come up with a more positive message. I was struck by something Ms. Taylor wrote you:  “…we don’t need parodies, we need solutions and resources. We need influencers like you, who have worked side by side with people affected by addiction, to join us in insisting that attention be paid, and resources devoted to preventing and healing this disease.”

In honor of your SNL colleagues who have succumbed to addiction, in honor of my son William, I ask that you and I find a time when we might meet to discuss solutions and resources.  I write in the hope that together we might help direct the proper and necessary attention to preventing and healing this disease. 

Without such attention the disease and the epidemic will not go away.  Please understand that my goal is to be positive and productive; the time for me to scold you is past.  The time to act is before us.  I can be patient.  I am persistent.  You need to know I’ve spoken before three Congressional committees, once before a U. S. Senate Addiction Forum, and addressed scientists and administrators at the National Institute on Drug Abuse at the invitation of its director, Dr. Nora Volkow.  In addition I’ve spoken to community groups and schools.  I will not rest until we have effected change in the battle against this disease.  I will not rest until I have had a chance to engage you in this endeavor.  

I am happy to come to you at a time and place most convenient for you.  I look forward to your response.  Said response would be the best personal outcome I could imagine as a result of International Overdose Awareness Day.

Respectfully yours,




Bill Williams


Cc:       Stephen B. Burke
            Marcia Lee Taylor   

        

Monday, August 8, 2016

Father First, Activist Second

I'm pleased to have this essay selected as a "Staff Pick" for Addiction [Unscripted]  Go to the link; read, comment, and share.  Thanks.

http://bit.ly/2aVjdxC

Friday, May 20, 2016

THE COMPREHENSIVE ADDICTION AND RECOVERY ACT - CARA; BILL & MARGOT GO TO WASHINGTON

Margot and I spent this past Wednesday and Thursday traveling to Washington, DC to testify before the House Bipartisan Task Force to Combat the Heroin Epidemic: Families Impacted by Addiction, led by Congresswoman Ann Custer, NH and Frank Guinta, NH.  Wednesday night we went to a reception for the 129 families we joined in DC for CARA Family Day.  We got a chance to talk with Sens. Kelly Ayotte of NH, Amy Klobuchar of MN, and Rep. Tim Ryan of OH.  All have been longtime sponsors and leaders in moving CARA along. Thursday we participated in the CARA Family Day.  We began with a morning press conference outside the Capitol and had a chance to talk with Sen. Rob Portman of OH and Congresswoman Sheila Jackson Lee of TX.  We were interviewed by DC Patch http://bit.ly/25dMiO8, met with aides to  New York Senators Schumer and Gillebrand and Congressman Nadler.  Thanks to our friend Carol McDaid we had lunch with Dr. Oz, giving us an opportunity to share our story and help educate him some more about addiction. We then taped an interview for the Addiction Policy Forum.  We were accompanied for much of this by the most capable and wonderful Courtney Hunter of the Partnership for Drug Free Kids. CARA will continue to need everyone's attention and support if it is to pass and BE APPROPRIATELY FUNDED.  Stay tuned everyone.  The entire event was put together by Jessica Nickel and Casey Elliott of the Addiction Policy Forum, a remarkable achievement.  They were the most important leaders we came across during our two days.    

   

Friday, April 29, 2016

Clinical Humility

William L. White is a hero of mine. His site is always a wealth of information. A while back Bill published an essay of mine, "Pinball" in which I wrote about my son lost to heroin: "I have recently come up with the idea of writing a letter to everyone who helped treat William along the tortuous descent to his....[death]. 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?"

It seems to me more calls to clinical humility are in order. Here' a good start. Thank you Bill and thank you Chris Budnick.

http://www.williamwhitepapers.com/blog/2016/04/a-call-for-clinical-humility.html

Sunday, April 17, 2016

Saturday Night Live and "Heroin AM"

I sent the following response to Lorne Michaels of Saturday Night Live after they aired a “commercial” for “Heroin AM”.  Should you be so inclined his e-mail address is below.  
Dear Mr. Michaels:

The young man pictured below is my son, William.  He might have found your Heroin AM "advertisement" funny. We'll never know. Unfortunately, he was not alive last night to view SNL. This picture was taken on October 20th, 2012.  It was taken four days after his insurance company, Emblem Health and their utilization review provider, ValueOptions denied him the in-patient detoxification services he requested. THERE'S SOME COMIC MATERIAL FOR YOU!  He accidentally overdosed and spent the next six weeks hospitalized before we made our decision to remove him from life support, because he would spend the rest of his life in a persistent vegetative state.  THERE'S SOME COMIC MATERIAL FOR YOU!  Like thousands of other grieving parents his mother and I have had to cope with the loss of our son. THERE'S SOME COMIC MATERIAL FOR YOU!  As advocates in the fight against substance use disorder, his mother and I have spoken to two Congressional committees, a U. S. Senate Forum on Addiction, and at the National Institute on Drug Abuse.  THERE'S SOME COMIC MATERIAL FOR YOU!  You can go here to watch what we had to say at the Senate Forum. It's had just above 5,400 views.  http://bit.ly/1zgE7O3  MAYBE THERE WILL BE USEFUL COMIC MATERIAL FOR YOU THERE.  Not the SIZE audience SNL gets, I grant you, but we're working on it.

While we work on increasing the awareness of our audience to the heroin and opioid epidemic that confronts this country; while we alert our audience to the fact that opioids and heroin kill 129 people daily - more than die in automobile accidents; while we remind people that nearly 10% of the population at large (including your staff, your performers, and your audience) has had, has, or will suffer from substance use disorder; we promise to do our best to diminish your audience.  MAYBE THERE WILL BE USEFUL COMIC MATERIAL FOR YOU IN THAT!!  I'm sure your advertisers will see the humor in it! 

We will do our best to encourage the 23 million people in long term recovery to boycott both your show, your advertisers, and your network.  We will do our best to encourage the 23 million people currently suffering from substance use disorder to boycott your show, your advertisers, and your network.   We will do our best to encourage the millions of family members affected by this disease to boycott your show, your advertisers, and your network.  YOU CAN CHUCKLE ABOUT THAT.  We're not.

Consider my television permanently turned off to your show. Kindly inform your sponsors I will no longer be purchasing their products.   Know that I WILL be encouraging anyone I can reach to do the same. When we say WILL at our house we remember a lost boy named Will and we take action. Unless, of course, you try some new material and air an apology.  Allow me to suggest a sincere and well thought out public service announcement. Perhaps something your network could air.  Should you do so, let me know.  I'll be happy to watch.

Feel free to share your thoughts with Mr. Michaels at:  lorne@lornemichaels.com




Tuesday, April 5, 2016

Letter To The Editor

I sent this to the editor of the River Reporter in Sullivan County, New York.  While a rural area, including part of the Catskill State Park, the county is besieged by drug problems.  New York's legislators are still slow to grasp the enormity of the problem.

In early February I joined several hundred Recovery advocates to meet with lawmakers in Albany. We told our stories of an addiction epidemic that is killing 362 people daily in our communities, stories of struggle, recurrence of the disease, lack of services, incarceration, and unspeakable loss.  At the time I wrote about some of these stories on Medium.  You can go here:  http://bit.ly/1oyuNVu
When we met with lawmakers in Albany we were told that our request to add $50 million additional dollars to a grossly underfunded OASAS budget to support Recovery Community Organizations, Recovery Community enters Recovery Coaches, and Family Support Navigators was a reasonable and rational request. 
More recently the subcommittee for Mental Health decided that $15 million in additional funds for the Executive Budget was an appropriate response to the greatest public health crisis the nation has seen in decades.  This insignificant amount of money on the budget table to address the most deadly  (and stigmatized) epidemic to hit New Yorkers since the AIDS crisis isn’t nearly enough. 
My Easter began Good Friday with a phone call from a distraught mother looking for help, trying to get her daughter into long-term rehabilitation.  Shortly after I talked with another mother whose son is struggling to find adequate long-term recovery services.  Both have stories of substandard treatment in Sullivan County facilities. A county where the coroner reports that a quarter of all deaths are drug related.  Today I had yet another call from a mother desperate to find adequate treatment that also meets the requirements of Sullivan County’s Drug Court.
Without recovery supports in place, our loved ones who receive addiction prevention and treatment services lack a continuum of care for their illness.  This means that when they return to our communities sustained recovery from the disease of addiction becomes extremely difficult – their disease reoccurs, they may break the law or even die.  The broken system is a setup for failure!  We must invest in the infrastructure of recovery supports.
It’s easy to give well-meaning but empty platitudes to a distraught mother or father who have lost their child when they beg lawmakers for help in addressing the number one killer among people aged 18 -24.  But they deserve more.  Our families deserve action.  New York families need more than just words.  We need the necessary resources put into the NYS OASAS budget so that our loved ones don’t continue to die. 
23 million Americans are now living in recovery from the disease of addiction.  That’s 23 million taxpayers who are contributing to their communities.  These people who have successfully battled their disease of addiction are no longer a tax-drain on our communities, rather they are functioning, productive members of society.  They have jobs, families of their own, and lives filled with hope and purpose.  They are living miracles – people who were able to overcome a once helpless and hopeless addiction – to live a life transformed into one of health and wellness.
With 22 million Americans living with active addiction, the solution of recovery is not only possible; it must be made available to anyone who needs it.  The key is that our leaders must be willing to invest financially to address the problem of addiction now.  It’s time to stop talking and start investing so another family like mine doesn’t lose a loved one to the chronic, progressive, and too often fatal disease of addiction.
We need to make addiction recovery a priority now and it starts with the budget.
I am registered and I vote.

Respectfully yours,


Bill Williams
Lew Beach NY



Thursday, February 18, 2016

Tip of the Iceberg

I’ve been to a number of rallies, advocacy days, conferences and meetings about substance use disorder/addiction.  Call it what you will, it comes down to the same horrible disease.  I am always moved and impressed by people who can bravely introduce themselves and say, “I’ve been in recovery for _________.”  The blank gets filled in with a figure that can range from decades to days.  They sometimes define what recovery means to them, for instance, “No mood or mind altering substances of any kind.”  Whether you are Michael Botticelli or (even especially) a shy young person sitting on the outer edge of a meeting, these are courageous, hopeful, and inspiring statements. 
I, too, am in recovery.  Recovery of a different sort.  Recovery from the loss of my son to an accidental heroin overdose.  For me that currently means just over three years and two months of an ever-present grief.   I say this not to appropriate the language of those who have successfully confronted the deadly disease of addiction, but rather as a grim reminder that there are fatalities in our wake as all of us in our recoveries work together toward solutions and a better time.  Worse yet, far too many celebrate substance recovery and endure grief recovery simultaneously.
Recently I sat in a state senator’s office with eight other people, working to impress a legislative aide on the need for more spending on addiction resources and the need to keep those brought to emergency rooms following overdoses for a period of at least 72 hours of observation.  We also urged support for legislation to mandate physician education on the disease of addiction to improve assessment skills, increase treatment referrals and, most importantly, revise opioid prescribing practices.  Doctors need broad education regarding addiction, not just enlightenment on prescribing practices. As compelling as our arguments for these advances were, the stories people shared in the short space of a half hour were far more persuasive.
Two of us were nurses, one an LPN, the other an RN with long experience in critical care; one in long term recovery for 15 years, the other for 9.  Two young people in long-term recovery were also there.  They had seen firsthand too many friends succumb to overdoses.  Indeed one had just lost a boyfriend of five years to an overdose only a month ago.  She fought hard to tell her story calmly while the pain of her loss welled to the surface.  Six of us were parents.  Only one could tell of a child currently in treatment.  While hopeful, it is a harrowing tale of incompetent and irresponsible treatment, relapses, overdoses, and great financial distress over a nine-year period.  Another had a similar tale with a son currently incarcerated.  “Safe” for now behind bars. 
Four parents, including myself, told of how our children died.  One, with both substance abuse problems and a psychiatric diagnosis (including suicidal ideation) was improperly discharged from a hospital.  His mother was never notified he was released.  She was notified a day later when he was found dead, having overdosed almost at the hospital doorstep.  He was barely out the door before he found a dealer.  In my case, our son requested in-patient detoxification, because was using both heroin and benzodiazepines. His insurers, Emblem Health/HIP and their utilization review subcontractor Value Options, denied him treatment, claiming in-patient treatment was not “medically necessary.”  He overdosed in a Starbucks within two hours of his denial, was revived with Narcan, hospitalized and released the same day – all without our knowledge.  Four days later he overdosed again, this time fatally, following six weeks of hospitalization and a traumatic bedside vigil for our family. 
Indeed, there was a palpable shudder in the room as the topic of insurance and insurance companies came up.  I have no doubt that we could have contributed to a lengthy discussion on the hurdles involved in obtaining and maintaining even minimal insurance coverage, let alone coverage that would actually provide treatment long enough to offer a chance at lasting recovery. 
One of us now in long-term recovery reported being recently diagnosed with a medical condition.  Despite knowing that this person had a history of substance use, the medication prescribed was a controlled substance.  Was this ignorance, willful ignorance, or laziness on the part of a doctor? 
Our meeting lasted half an hour.  I suggested that the stories we were telling were merely the tip of an iceberg.  We all had much more we could tell.  Lifetimes of stories.  That became ever more apparent as we shared tales with each other both before and after the meeting.
We were but nine people.  Nine people who happened to be part of a much larger group lobbying state legislators in offices all over the capitol that day.  Allow me to extend a metaphor. If we were a single iceberg, then the meetings going on around us were a large ice field.  The loss, the collective devastation suffered by all there that day, could surely be called Titanic. 
The course to recovery for all has a multitude of tragic tales in its wake.  The good news and the great hope is how those who have suffered loss and those who have suffered from addiction and recovered are able and willing to come together, to cast off the stigma too often associated with the disease, and to work toward a common goal.  We sail ahead, propelled by all too familiar stories.     
              

  

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?