In September 2016, there was a video that went viral. It was viewed and shared so many times that the Washington Post and New York Times covered it, in addition to countless local and national news outlets.
It wasn’t Adele’s Carpool Karaoke with James Corden or the latest TikTok challenge (TikTok only launched that month). It was a heartbreaking video of a 2-year-old girl in “Frozen” pajamas crying, pulling, and shaking her mother in the toy aisle of a Family Dollar store in Lawrence, Massachusetts. The mother, whom I will identify only by her first name Mandy, was unconscious after an opioid overdose, and the scene was recorded on cellphone by bystanders after calling 911.
The video was a distressing visual reminder of the opioid epidemic in the US. The Centers for Disease Control and Prevention counted over 103,000 overdose deaths in the twelve months ending April 2021. In 2020, 75% of overdoses involved an opioid. It is common to stereotype drug users, yet the accessibility of prescription painkillers has expanded opioid use to touch all of America. Everyone from construction workers managing chronic pain to stay on the job to patients prescribed opioids following surgery is susceptible, and opioid addiction impacts parents, children, workers, and neighbors. This video helps to explain how it happens.
Maureen Cavanagh is the author of “If You Love Me: A Mother’s Journey Through Her Daughter’s Opioid Addiction” and founder of Magnolia New Beginnings, which provides education and peer support to those affected by substance use disorder and their families. Cavanagh helped Mandy find treatment in 2016 and says, “It can happen in any family. We want to find the thing in the family that we can point to and say that it is the ‘reason’ for the substance abuse because we’re scared. Things like, ‘this won’t happen to me because they didn’t have a family dinner. They didn’t go on family vacations. They didn’t talk to their kids about drugs.’ All this is ridiculous. I know hundreds of people, including myself, whose children got involved in drugs, and they did those things.”
Thankfully, three out of four people who experience addiction eventually recover, according to this CDC and National Institutes of Health study. Cavanagh helped me understand how.
It’s often said that words matter, and you discuss how the words used to describe substance abuse and addiction are critically important. When the Associated Press stylebook released new guidelines in 2017, it recommended that reporters “avoid words like alcoholic, addict, user, and abuser,” and “instead, choose phrasing like he was addicted, people with heroin addiction or he used drugs.” What is the significance to you of changing how we talk about addiction, and how do words matter in this situation?
Maureen Cavanagh: I watched not only my daughter, but other people lie in the hospital hallway when they came in with an overdose. They might have been technically dead ten minutes before. There may be rooms available, but because of the stigma, they’re not treated the same. I started to really look into how to change that because I thought that stigma was the root of it.
I was lucky enough to work with Dr. John Kelly and his team at the Recovery Research Institute at Massachusetts General Hospital, which developed the Addictionary. If you go to the word addict, you can look it up and it will give you the research behind why we shouldn’t use that word.
Let’s face it. People routinely use words much harsher than substance abuser, which is the term the study found created biases in medical care. I think that’s at the core of it, the people I love and the families I know from Magnolia are not getting the care that they deserve and need because of the stigma. We have to change that because it’s having an impact.
We knew it for a long time. The AP style guide finally changed the language in 2017. Yet you open up the paper and the old language is still used. It just shows you the stigma is still there, because it’s not important enough to change for a lot of people.
Magnolia New Beginnings is the 501(c)(3) non-profit you founded initially with another mission, but has become an unbiased source of information for families. It provides parent support, education, and coaching. Can you describe the evolution of Magnolia’s mission, and how you pivoted to its current mission?
Cavanagh: It was about seeing gaps and thinking, “I think I can do something about that.” I’ve been an advocate for Massachusetts to work with people to have a roof over their head. If you don’t have a roof over your head, you can’t work on your sobriety. You can’t work on anything because you don’t know where you’re going to be the next moment.
When I went to family meetings, I would see such bad information being disseminated, and it was always the loudest voice in the room.
Because I’m an educator, I’d go home and look up the research and see that it does not support what was said. I’m thinking to myself, “Here are all these vulnerable people listening to someone who seems like the authority, because they’re the loudest voice in the room, saying that this is the thing that you have to do.” People are trying it and finding out that’s not helping at all.
Somebody has to understand the facts and the science and be able to gently correct somebody who’s misinformed; otherwise, they’re going to misinform a whole bunch of other people. We just don’t do this with any other group addressing a medical disorder. We don’t leave them out to fend for themselves. We do this with substance use disorder because of the stigma and shame associated with it.
Can you talk to the importance of networking, and how Magnolia helps families to build a network of support?
Cavanagh: I created a NAADC Association for Addiction-approved training for moderated family meetings. They are structured and lightly facilitated. They include an educational module and a self-care module. Those are two things that families need. They’re able to connect, and they’re given resources.
In the group, they’re able to ask questions. They’re able to talk about their experiences. There are no treatment centers or marketers allowed. Because of that, they can talk freely. Something that happened recently is a mother was able to get treatment recommendations for her son in Florida with no insurance. That happened within 20 minutes. That’s the power of that group.
As if innovation wasn’t hard enough, bringing innovation to scale can be even harder. Naloxone (Narcan) was patented in 1961, yet Narcan Nasal Spray wasn’t approved by the FDA for emergency treatment until 2015. Why do you think that is, and what do you hope citizens will do to help make Narcan more widely available?
Cavanagh: I think 2015 correlates with when people started talking about the opioid crisis. Almost every state has a standing order that allows you to walk into a pharmacy and say that you need it.
The first time I walked into the pharmacy in my town once the standing order first came in Massachusetts, you would have thought I was asking for the nuclear code. They were horrified. I already had Narcan, but I just wanted to see what would happen so I could tell the members of the Magnolia group.
I was very well known in town due to my daughter’s situation. The pharmacist said, “Well, it’s going to be $110 because it’s not for you.” I said, “How do you know it’s not for me?” It was like a hush fell over my town. “How do you know? Would I have a sign on me that said I needed it?” The attitude was really shocking. I think that Narcan being available is directly correlated with when people started speaking up.
The beauty of Narcan is that you can’t hurt someone by using it, even if they aren’t overdosing. Most people don’t know that. You don’t have to be afraid to help or instruct somebody how to help. People carry it to be prepared, just like we get trained in CPR to be prepared.
I don’t hang around with people that are likely to have a heart attack or choke, but I’m trained to do CPR and the Heimlich maneuver. It’s not like I go out to dinner and my family needs the Heimlich all the time. I just know how to do it because I don’t want to stand there and not be able to help. It’s the same with Narcan.
In innovation we talk about building an MVP: a Minimum Viable Product. Basically, something that is far from perfect, yet good enough to test out to be able to keep iterating on and improving. It would seem that someone in recovery is essentially in a constant, life-long, and life or death state of innovation, constantly iterating and working to reinvent themselves to improve. What have you learned through your daughter’s situation that can help others to accept themselves as an MVP, far from perfect, yet good enough to test out, iterate on, and improve?
Cavanagh: I think that a lot of people who have a substance use disorder walk around feeling that nothing they do is good enough. That comes from the stigma and the shame, but it also comes from the attitudes of the families that love them that don’t understand just how painful and difficult and hard this is.
Many start off like that because they can’t imagine getting their lives back. I know that that was the biggest stumbling block for my daughter. She thought, “Okay, well, I can get sober, but I’m never going to be able to repair all this, and I’m never going to feel good about myself,” because of all the trauma and all the PTSD from what happened while she was using.
I think that getting rid of a lot of this shame and stigma and also educating families and support systems is so important because you can build on your successes. You begin to feel like, “You know what, this is good. I’m doing better. I’m doing well.” It’s ok that it isn’t perfect.
In the book, you relate how you made the decision to really take the Serenity Prayer, written by Reinhold Niebuhr about acceptance, to heart and stopped trying to rescue your daughter, while still letting her know you loved her. What did you learn from that experience and what was the outcome of that decision?
Cavanagh: I believe in an informed take on the Serenity Prayer, basically holding space for somebody until they’re ready to make that leap to do the hardest work they’ll ever do. It means letting our loved ones know “I love you, I’m here for you and I’m going to support all your good decisions, but I’m also going to take care of myself.”
I also realized that the only person I was able to change was me. I was only able to create boundaries and rules that worked for me. I realized what I’m able to do and what I’m not able to do. Then I educated myself and found reliable sources of information, which is why I’m training people to run these facilitated family meetings.
And how is Mandy now?
Cavanagh: Everybody in my book is in recovery and they’re all sober. When I wrote the book, I was terrified that everybody was going to be gone, because I wrote about people that everybody had given up on.
And I’m delighted to say that Mandy works as a case manager in a program with people who are chronically homeless. She’s getting people into treatment, helping them with all kinds of things all the time.
The conversation has been edited and condensed for clarity. If you or someone you know needs help with a substance abuse disorder, visit www.magnoliarecoveryresources.com or www.magnolianewbeginnings.org.