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The other day, I was thinking back over the tragic deaths of many of my family members. And I thought about how I felt towards people a few decades ago when they suffered various illnesses or struggled with disease or addiction. I didn’t have much compassion because I hadn’t ever experienced those types of painful and heart-wrenching needs myself or in anyone I loved.
But in 2000, when my younger brother was in intensive care for two months on a ventilator and in a coma, I began to learn about the sorrow and desperation that hover around situations like this – for the one who is ill and for those who love them and who cannot do a thing to help or change the outcome. His diagnosis of HIV/AIDS and slow but impending death broke my heart – maybe for the first time in my life.
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My husband and I learned years ago that in many areas, we see and experience the world in very opposite ways. I live in the future, he enjoys the present. I am content with less, he needs more. I want to get to the destination, he enjoys the ride. Our theme song is The Beatles Hello Goodbye: ‘You say Goodbye, and I say Hello’. After living together so many years, some of our ingrained predispositions have begun to change as we have rubbed off on each other – and this is a good thing as I believe it makes us each a more balanced human.
This thought came to mind this week as I began to work on this blog post. Sometimes I am so focused on my destination or goal and being faithful to stick with it that it takes a while for me to realize I am not enjoying the ride. As I wondered why, I realized that it’s not that I don’t feel passionately about advocating for those struggling with addiction and mental health issues. Rather, it’s that I have begun to feel stretched too thin – which is not comfortable or healthy. With the holidays approaching, there are increasing family commitments and events that I want to enjoy and not just endure until they are over. The path to this goal is to be more realistic about what I can and cannot do within my finite energy and allotted time.
This contrast in ideologies applies to recovery strategies as well. When our son was trying to recover from opioid addiction 10-15 years ago, the goal was to complete a recovery program and once and for all become clean and sober – get to the destination. As unrealistic as this seems to us now, it is still a prevailing goal for many recovery programs. Sadly, what it did for our son – and for us – was to set us up for discouragement and shame with every inevitable relapse. Failure.
What I hear from current recovery advocates is that recovery is a goal and a process. If your desire and goal is to become clean and sober, you will embark on a plan of some sort. It is absolutely essential that you get to your destination because with many drugs, continued addiction often leads to death. But it’s also absolutely essential that you understand that it will be a journey with many ups and downs – and that you need to be able to enjoy the ride, the process, as much as possible so that you will have the continued desire to make it to the goal. And that those who are advocating for you, riding with you, will understand and assist you on your journey.
So, in attempting to take my own advice, I am going to discontinue weekly blog posts for a while. Instead, I will write blogs as often as I can and I look forward to your comments and ‘likes’ – every ‘like’ helps with visibility and brings new readers. After almost four years of posts on all aspects of addiction & substances, grief & loss, and mental health, if you search the site, you should find something to bring insight and encouragement for the issues that you are facing today. Let’s enjoy the ride as much as possible as we head toward our destinations.
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A few months ago, John was on a phone call with a physician who was asking his input about a new drug to help with opioid addiction. John shared about our son’s addiction and death and how we hoped that by speaking openly about his life and writing our book and blog we could help in some small way. His response was something I did not expect and will never forget. He said, “Don’t underestimate advocacy because it is the surest way to change things. Science and medicine take a long time and have limited effectiveness.”
An advocate is someone who works by speaking, acting, or writing truthfully on behalf of a person or group in order to promote, protect, and defend their welfare and to seek justice for their rights. To speak out for those who have no voice. But advocacy is not cheerleading. A cheerleader is someone who only supports their team or player – since they are in competition against another team. They are indiscriminate about what their team does or doesn’t do. They don’t necessarily look at the big picture or causes and effects. Their role is to simply cheer on their team or player and boost support from their fans with slogans that may or may not be true.
Serious problems that affect the wellbeing of individuals, communities, and entire societies, such as the Covid-19 pandemic, addictions, and racial prejudice and inequality, are not helped by cheerleading. People in danger and suffering need advocates who have compassion, who are truth-tellers, and who will vigorously and untiringly work for a solution.
When I see a young person on the streets, homeless and struggling, enslaved to a substance that is stealing their life – or anyone living with addiction of any sort – I long to be helpful in a meaningful way and become discouraged at my inability to do so. And if I feel discouraged, how must they feel? What will help bring real, substantive change and hope to these lives and in these circumstances?
As parents of a son with a deadly addiction, we were sometimes cheerleaders when we needed to be advocates. Cheering him on and telling him he could do it without any medical help was not being realistic or being the advocates he needed. I think it is difficult to be an effective advocate for those we love because we are too close to have a clear perspective. Which is why a supportive recovery community – for both the family and the one struggling – is vital. We must try and use whatever resources we have: our voice for those who are not being heard, our writing to bring clarity to public thinking, our physical presence to stand or march with others, and our time, energy, and finances to step in where we can or offer help to find those resources.
There are as many ways to be an advocate as there are needs in this world. I have friends involved in racial justice, in refugee struggles, in stopping sexual exploitation and abuse, homelessness and poverty – the list is endless. The question is: How can each one of us be an advocate for the people and needs we are aware of and that we have a passion for?
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In a world where ‘nothing is certain except death and taxes’ and loss is unavoidable, grief is guaranteed to be an emotion each of us will experience in our lives sooner or later. If we have lost a loved one and grieved well, we can understand grief in others and empathize more fully.
But what about those who are living with a loved one with mental health problems, or in active addiction, or in a recovery program for the umpteenth time, or whose whereabouts are unknown? How do they live with the constant flux between hoping against hope, waiting, and praying for a miraculous change, and discouragement and depression as they watch their loved one struggle against an unrelenting enemy no one can see? My husband and I lived in this twilight zone for years – as do millions of others. While he was still living, we were grieving the loss of the son we loved and raised and had hoped to see move successfully into adulthood.
In an excellent article, Grieving the Living, Dr. Susan D. Writer shared insights that are an invaluable help and source of comfort for this all too common situation:
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A few weeks ago, John and I were interviewed by Jeff Simone for his Surviving the OpioidEpidemic podcast (see YouTube link). We had a really great conversation about our family living with a teenage son with opioid addiction and how his death from overdose affected us and changed our lives. Jeff serves the addiction community with a coaching service called Reaction Recovery.
Here are some insights into his recovery approach.
Reaction Recovery is a private coaching service designed to help individuals thrive in their life of recovery from substance use disorders. It is a one to one, intensive behavioral approach to help individuals identify areas to make focused and intentional lifestyle modifications. Dr. Simone has been formally trained in clinical pharmaceutical and dietary supplementation advisory and management. He has earned degrees in nutrition, physiology, is a certified life coach, and has personally worked with over 200 people recovering from substance addictions.
Why ‘Reaction’ Recovery? Who is reacting and to what?
Reaction Recovery was started as a “reaction” to the current treatment approach to addiction. The medical community is doing a good job offering short-term acute care crisis management for addictive disorders, but are doing poorly offering long-term treatment for those who have become abstinent but not yet stabilized. This describes our son’s – and most others we know – situation perfectly. Addiction needs long-term care and support.
The basic coaching approach addresses the physiology of the addiction, post-acute withdrawal syndromes, nutritional interventions, dietary supplementation, and how this all can safely integrate with other pharmaceutical treatment strategies that might already be on board.
Based on what Dr. Simone has called the ’12 Daily Rules for Recovery,’ their coaching techniques will systematically and methodically help the individual identify specific areas to be adjusted and then develop individually tailored strategies to affect real change.
The 12 Rules focus on building up a support community – first and foremost – then developing a healthy and consistent morning routine, understanding the importance of full-day nutrition, ensuring the body is receiving all nutrients necessary to support a strong and optimal brain and body, establishing a safe and appropriate dietary supplement regimen, expanding the mind with helpful books and information, developing a realistic exercise routine, carefully auditing the external distractions in our lives, constructing a regular nighttime routine, and more.
When these considerations get repeated across thousands of iterations, and with a little guidance and accountability, they become a foundation upon which the rest of the individual’s recovery will be built. Eventually – through ruthless repetition – new neural pathways begin to form until eventually this life of abstinence doesn’t feel so difficult and a sustainable, meaningful recovery is able to take shape.
Jeff’s approach of community as essential and creating new, healthy habits to replace old, destructive ones has been the topic of several of my blogs (see below). Whatever habits we create will become automatic and will serve us and our life-goals well as we go through each day.
(Short topical blog based on Opiate Nation – translation into most languages in tab on right.)
August 2nd is the seventh anniversary of our son’s death. JL died of a heroin overdose in the early morning hours of that Saturday in 2014. He was 25 years old.
In 2020 alone, 93,000 people died of drug overdoses in the USA – hundreds of thousands more worldwide. Millions in the past few decades. These were beloved daughters, sons, partners, parents, friends, relatives. I think I can confidently say they did not want to be addicted and if they could have turned back the clock to the time before they began using drugs, they would have.
(Short topical blogs based on Opiate Nation – translation into most languages in tab on right.)
When we hear the phrase “ghost stories” most of us think of scary and spooky stories shared around a campfire with the intended, and predicable, consequence of keeping us awake at night.
But when H Lee (aka Harris Insler) decided to call his new podcast series “These Ghosts Must Be Heard”, it wasn’t because he would be interviewing people with paranormal experiences. And although the stories his guests share aren’t scary in the ghoulish sense, they have kept their narrators awake at night for days, weeks, and months on end. John and I included. (To hear our interview with Harris, see links below for Podbean, Amazon, Spotify.)
These are real-life experiences and these “ghosts” are the spirits of our deceased loved ones: children, friends, partners who have succumbed to premature and preventable deaths from opioid overdoses.
(Short topical blogs based on Opiate Nation – translation into most languages in tab on right.)
While reading Rising Strong by Brené Brown, I was struck by a thought she shared about our American culture and the absence of honest conversation and the hard work it takes for us to rise strong after a fall on our face – a failure. She worries that “this lack of honesty about overcoming adversity has created a Gilded Age of Failure.”
Gilding is a perfect word-picture for this characteristically human behavior: applying a very thin coating of gold to a plain, inexpensive object that gives it the appearance of gold. This is what we do when we are dishonest about our feelings. We are choosing to make our real, plain, and common story appear better than it is.
“We’ve all fallen…but scars are easier to talk about than they are to show with all the remembered feelings laid bare…We much prefer stories about falling and rising to be inspirational and sanitized…We like recovery stories to move quickly through the dark so we can get to the sweeping redemptive ending.” (Rising Strong, Introduction)
(Thirty-first in a series of topical blogs based on chapter by chapter excerpts from Opiate Nation. Translation into most languages is available to the right.)
There is something about the rise of a full moon that I just love. I’m not sure why it holds such fascination for me, but it always has. I’m greedy about it – I wish we had a full moon every night, like we have the sun every day. When I was growing up in Tucson, Arizona, I loved anticipating the moon’s first peek as it came up over the mountains on the eastern edge of our valley, creating a silhouette of Thimble Peak. Then, it was as if the moon just popped up and suddenly the entire valley was bathed in moonlight. I loved walking in the desert under its light. The movie, Under the Same Moon, captures the beautiful thought that regardless of where we are in the world, we can look up and know we are under the same moon as those we love.
Anticipation can bring pleasure or anxiety as we are waiting for or pondering a future event. Expectation – like a child waiting for their birthday. But during the Covid Pandemic, there is a sense of anxiety from there being no known end in sight. The anticipation is open-ended and we are unable to plan ahead, which has caused instability in many areas: our health, jobs, housing, food supply. We may anticipate a not-so-good outcome and the future is not predictable or knowable. Not that any of our futures are predictable or knowable, but there are fairly reasonable assumptions we can make when life is close to “normal”.
(Thirtieth in a series of topical blogs based on chapter by chapter excerpts from Opiate Nation. Translation into most languages is available to the right.)
When I finished writing Chapter 27, Grief Part 3: Accepting the Mystery, I didn’t realize what I had actually done. It was four years after our son had died, the pain from the first few years had diminished, I had gone through four of the Five Stages of Grief, and was moving forward in what I thought was the final stage, Acceptance. I was not dealing with denial, anger, bargaining, or depression any longer.
One day I was on a call with a friend. She was telling me her thoughts about the book and asked: “Do you realize what you have done?” No, I guess not. What? “You have gone through the sixth stage of grief: finding meaning. Your book was your way to find, and then share, meaning in the loss of JL’s life.”
She was right. But it wasn’t a goal I set out to accomplish. I think it was intuitive for me, something I had to do. Even after we finally accept the reality of a tragic loss in our lives, many of us want to find meaning. While we can’t find reason in the death, we can choose how we ascribe meaning to the life. I did not want JL’s life to seem meaningless.
The Ohio Society of Addiction Medicine is a chapter of ASAM - A professional society actively seeking to define and expand the field of addiction medicine.
Opiate Nation 