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.