What Survivors Do

Four years ago this past January, a close family member, a teenager, died of a heroin overdose. As you can imagine, the whole family was terribly upset. The boy’s parents were overcome with grief. We’re a large family, and we were all stunned. I knew that the boy had been dealing with an addiction issue, and that he had dropped out of high school; his parents didn’t know what to do with him. But I didn’t know much more that that. His parents had put on a brave face and said he was in this rehab or that rehab and they were hoping for the best. But their hopes were dashed when, less than a month after a year long – and very expensive – stay in a rehab place, he OD’d. (I’ve written about that loss in Aftermath.)

The story is way too common. According the the Center for Disease Control, opioids were involved in 42,249 deaths in 2016; opioid overdose deaths were five times higher in 2016 than 1999. By 2018, deaths rose to over 70,000, almost double 2016. Where does it end?!  And every one of these drug-related deaths left behind many more grieving friends and family. People suffering from addiction slip in and out of rehab centers and detox programs, but they very often relapse. Think of someone like Amy Winehouse: such a promising performer; she entered several treatment programs but didn’t make it. Is this the best our medical establishment can do?

A couple of months ago, I was speaking with a representative of my college alma mater—we’ll call him Allen—who was trying to convince me to donate some money to the university.  Allen knew of the book I wrote a few years ago about caring for my brother, who suffered from severe and treatment resistant schizophrenia. We talked for a while about the advocacy work I’ve been doing to try to improve care for people with serious mental illnesses. And then I described my new poetry collection, Aftermath, which was written in the months after my young relative’s overdose death.  

Allen nodded his head a few times as I spoke, then said that I was the first person he’d met who actually knew anyone who was mentally ill or had died from a drug overdoseHe’d read about the “opioid epidemic” in the newspaper and on line. At our country’s all-too-frequent mass shootings, or in stories about homeless people, there is often a reference to people being mentally ill. But he said he’d never been directly touched by it, himself. Our conversation drifted from one topic to the next, as conversations often do. And then, out of the blue, Allen said, “You know, a cousin of mine committed suicide a couple of years ago. And we had an uncle who suffered from terrible depression and was in and out of the hospital.”  

In half an hour he went from being “not directly touched” to describing two close family members who suffered from mental illness. 

It is likely that in his universe of friends and family there is also someone with an addiction problem. I don’t wish it on him, or anyone, but statistically, it is likely.  Still, people don’t talk about it. Addiction and mental illness are judged as if they are the result of weakness–a lack of willpower or simply a behavioral issue that victims can work their way out of if they would just try harder. And so people don’t talk about it; they are ashamed to talk about it. Only when my conversation had normalized the topic did Allen remember the uncle and cousin. We don’t like to even think about it.

Where we are at the federal level

SAMHSA – the Substance Abuse & Mental Health Services Administration—the government agency assigned to deal with these problems—is overwhelmed and underfunded. And one of the persistent problems they face is limiting their funding to evidence-based practices for treatment.  Elinore F. McCance-Katz, MD, Ph.D., the new Assistant Secretary for Mental Health and Substance Use, issued a statement in January of 2018 regarding the National Registry of Evidence-based Programs and Practices (NREPP) and SAMHSA’s new approach to implementation of evidence-based practices (EBPs). 

She said that SAMHSA has used the NREPP since 1997 to help them decide what to fund. For the majority of its existence, NREPP vetted practices and programs submitted by outside developers – resulting in a skewed presentation of evidence-based interventions which did not address the spectrum of needs of those living with serious mental illness and substance use disorders. They presented programs they knew how to run, rather than the programs people might need more. These needs include screening, evaluation, diagnosis, treatment, psychotherapies, psychosocial supports and recovery services in the community. In other words, programs previously defined as successful don’t, on further study, really get to the heart of the problems. So what is a successful program? 

Defining “Successful Rehab”

I’ll let professionals analyze the entire spectrum of community needs. But I think I share my definition of a successful drug rehab program with most people. A successful program would be one which treats anyone in the community who needs it. One where at least three-quarters of the participants complete the program, and where 80% or 90% of those who complete it are still drug free five years later. Sounds reasonable, don’t you think? But my young relative who relapsed, to deadly effect, was not an outlier. What happened to him is the rule, not the exception.

Treatment results are not impressive. According to one online site, (which I picked because they seem proud of their efforts)

  • Inpatient treatment (combining medication and counseling with an average stay of 31 days) costs $3,200 on average.*** 73% of addicts complete treatment and 21% (of the ones who complete the course) remain sober after five years.
  • Residential treatment (average stay 71 days) costs $3,100 on average. 51% of addicts complete treatment and 21% remain sober after five years.
  • Detox—which is medically assisted, and can go on for and average of  227 days—costs $2,200 on average. 33% of addicts complete treatment and 17% remain sober after five years.
  • Outpatient drug-free treatments—lasting 164 days— cost $1,200 on average.*** 43% of addicts complete treatment and 18% ( of the 43%) remain sober after five years.

     (***I’m not sure what these costs refer to: weeks? the complete program?)

These statistics, as weak as they are on their face, are even worse than they first appear. For example, 21% of 73% is 15%. That means that only 15% of people who start an inpatient treatment program are still clean after five years.  And the stats for detox are much worse: 17% of 33% is 5.6%. In other words, under 6% of people who go into detox are clean five years later. And so on. How can anyone consider this a successful program? And is it the program itself or follow up care in the community? What is going wrong?

In McCance-Katz’s statement, after some analysis she concluded,  “We know that the majority of behavioral health programs still do not use evidence-based practices: one indicator being the lack of medication-assisted treatment, the accepted, life-saving standard of care for opioid use disorder, in specialty substance use disorder programs nationwide.”  What I read her to be saying is that people around the country are paying for, and placing their hopes on, programs that often do not use the practices that actually work. This has to change.

Of course, we can all wish that the drug companies would be more responsible and that criminal drug cartels didn’t exist.  In the meantime, we can put pressure on the medical research establishment to figure out why some people seem to become addicted so easily, while others don’t. We can also ask those researchers to identify treatments that have been proven to actually work. And we can help our addicted loved ones find a treatment program that has been proven to work better than most. 

To do that, we have to talk about it. We have to be willing to face up to the problems we see around us. If we knew a relative or friend had cancer, we wouldn’t hesitate to mention a reputable treatment center for the disease. We can do the same for substance abuse and brain disorders.

And we can demand that our lawmakers fund research to discover causes and better approaches to cures. We voted for them. Our taxes pay their salaries. Let’s demand that they support Dr. McCance-Katz’s efforts to find evidence-based practices that work for the big problems. Sometimes those of us who have already lost our loved one have a valuable perspective on what works and what doesn’t. Those who have seen someone turn their life around also have learned much from the process. Let us all speak up.

Follow Up 

This is the official SAMHSA website that will direct you to a treatment program that at least has a chance of working:  https://www.samhsa.gov/find-help

And this is SAMHSA’s National Helpline

1-800-662-HELP (4357)
TTY: 1-800-487-4889

Website: www.samhsa.gov/find-help/national-helpline

Also known as the Treatment Referral Routing Service, this Helpline provides 24-hour free and confidential treatment referral and information about mental and/or substance use disorders, prevention, and recovery in English and Spanish.

The Center for Disease Control also has several valuable links about substance abuse disorder and an outline for ways for reduce overdose deaths.

 

For more information on my book, Aftermath, click here.

 

Doric Loop

for Nick and Charlotte

I.
It’s a simple casket, its wood polished to a high luster, the lid edged by a pleasing curve. Something simple; only needed for a couple of days.
Casket: 1. a small case or chest, as for jewels or other valuables. And what could be more valuable than this boy, this almost man, this never to be a man? 2. a coffin, possibly an alteration of the old French, cassette. An endless loop? Is this an endless loop of foolish choices and bad judgment leading to inevitable tragedy?
Not a cask: (a barrel, a cylindrical container that holds liquids.) Nor a casque, so famous for Poe’s The Casque of Amontillado, and poor, vain Fortunato, left chained to a moldy brick wall behind an archway, deep beneath the river. (Fortuna: Spanish for fate, the inevitable, nothing to do with fortunate, meaning lucky.) In ancient Greece the three fates, Clotho, Lachesis and Atropos were thought to control human destiny. I’ve met them in the Sunday crossword every now and then.
A casket. A tisket a tasket – a green and yellow one would surely stun this assembly, a bizarre mix of family and my nephew’s druggie friends,  black-clad boys with ear plugs and tattoos on their necks and his girlfriend/baby mama with the obligatory nose ring, a spray of red roses tattooed across her chest and black latticework along her arms.
The classic curve of the wood, the inverse of the fluted columns on the simplest of Classic Greek styles. Is this an ogee curve? Another crossword puzzle word.

II.

An old man told me once about the worst funeral he had ever attended. It was across the river in Haverstraw, back in 19 and 36, he said, a very cold winter in these parts. As he spoke, I pictured Depression era men in overalls carrying a casket like this one across a snowy field on a cold, blustery day like today. The cemetery was on a steep hillside looking out over the Hudson, and when one pallbearer lost his footing, the coffin dropped and slid – to the horror of the assembled family and friends and well-wishers of one sort or another – and took off down the steep incline like an Olympic luge, till it rammed a tall monument erected some years before in honor of the town’s former mayor and sprang open, flinging the corpse in a perfect 10 of an arc to land in a seated position a little further downhill, leaning against the headstone of a Mrs. Mary Ellen Hitchens, may she rest in peace, before it (the corpse, not the headstone) fell over on its side.
Women screamed. Friends moved to shield the horrified family from the ghastly sight. A flock of crows flew up into the winter sky cawing excitedly, a black cloud blocking the sun. Funeral employees and pall bearers hurried to recapture the elusive body. With each step as they ran down the hillside, their feet broke through a thin crust of ice into softer snow below, which proceeded to fill their black dress shoes with clumps of icy crystals that melted into frigid pools. Embarrassing wet spots appeared on their pants where they fell. It was some time before they could get the deceased positioned back in the box and the box placed into its resting place.
I don’t really believe this story, though the old man promised it was true. But then, again, Santa Claus was supposed to be true. God was supposed to be true. I’d like to think that the spirit, at least, flew through the air, to meet with dear ones again on God’s golden shore, as the Soggy Bottom Boys sang. Though how our spirit selves will recognize each other without bodies, still trapped down there under the snow, I don’t know.

III.

There’ll be no snow for this casket. My nephew will find a warm welcome tomorrow at the local crematorium, a small brick affair, absent of any decorative moldings, smooth Doric style or otherwise.
This afternoon, aunts, sisters and friends of the boy stutter out sad stories. The boy’s uncle, my brother, plays his guitar and an aunt holds her hymnal and sings, “In the sweet bye and bye. We shall meet in the sweet bye and bye.” And my sister sits and wrings one wad of tissues after another till this crowd of weeping mothers and fathers and friends finally goes home.
The lovely curve of the lid is almost hidden under the spray of roses and carnations, all white for the boy, white for his youth, white for… I don’t know what for.
And we scoop my sister up and get her some food at Cappola’s down the block, in a brick building that has been partially stuccoed to resemble a Tuscan villa with stone, Italian-style arches, like those where poor Fortunato found his eternal rest.

RIP Nick. May, 1995 – January, 2014