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.