No Story Ever Really Ends: Talking with Amy Long
I found Amy Long on Instagram four years ago. I first read Codependence on my iPad in a flurry; I wanted to get as much of it into my head as quickly as possible. Long’s writing doesn’t just tell a story but allows readers to live it vicariously through her artfully crafted sentences. Each piece of each essay in Codependence works to create a narrative that stays with you long after you’ve closed the book. Long dispenses with the traditional addiction-memoir structure, choosing instead to subvert it by tying together innovative formal experiments and a nonlinear chronology; the result is a bleaker and less hopeful but also truer narrative, centered on what it means for Long to survive in a world that actively seeks to destroy her and derails her attempts to relieve debilitating, intractable headaches.
Codependence was a finalist for the 2020 CLMP Firecracker award for creative nonfiction, was nominated for a Foreword Reviews 2019 INDIES award, and was chosen as one of Entropy’s Best Books of 2019. Long’s writing has appeared in print and online in publications including DIAGRAM, Hayden’s Ferry Review, Ninth Letter, and elsewhere, including as a Notable Essay in Best American Essays 2018.
Amy Long and I spoke about her relationship with social media, the complexities of disordered substance use, and the ways our ideas about drugs and drug use are oversimplified, especially when it comes to those of us who live with chronic pain.
The Rumpus: Codependence takes a less traditional form of storytelling; it starts en media res, and the rest is history. Can you talk about the structure, and whether you ever get to write the last chapter?
Amy Long: About half the book consists of Bluets-style braided essays with numbered paragraphs, all of which are named after some recovery- or addiction-related term that I use ironically to make readers question their assumptions about drugs and pain. The braided essays have a present-tense narrative that’s punctuated by past-tense scenes or ruminations, and the present-tense story was often unfolding as I wrote the essay.
For instance, the first essay, “Relapse,” centers on me telling my mom that I’m taking opioids for my pain again. I started writing that essay as soon as I got off the phone with her. But in “Comedown,” which interrogates the link between depression, pain, and pain management, the present is about four or five months later. And then there are what I call “The David Essays,” which focus on my past recreational drug use with an addicted boyfriend. They have that same present/past-tense pattern, but the present-tense narratives might refer to events that happened almost twenty years ago because that’s when I met David and started doing drugs with him. So, the chronology, while purposeful, can feel a little bit shaky.
I get what you’re saying. No story ever really ends; I could add in a whole new wave of pain-management stories now, especially since 2016 was such a bad year for pain patients and for me especially. I end the book where I do because it makes a good arc. In the last essay, I’m thinking about getting back together with David, and he comes to visit me in Virginia. I wrote that essay pretty much as it was all happening. The essay’s turning point made me change my mind about something I was doing, and after that, all of it happened no more than a month—sometimes literal minutes—before I wrote about it. To circle back to David at the end of the book felt right to me. Sometimes I wonder if I did the stupid things I do in that essay so my book would have a better ending!
Rumpus: You write of the dynamic between you and David: “Back then, I didn’t know what to believe, so I decided to believe he hadn’t done anything. If I was wrong, and he’d really cheated, it didn’t matter. He was still there. He still wanted me.” Why is want so often confused with love? Do you see your relationships in the book with men and drugs as similar?
Long: It’s hard for me to divorce the passage you cite from the specific kind of interaction it depicts. I’m describing the way David used to tell me he’d done something mean or contracted some disease or whatever, and, when I started crying, swear he was just fucking with me, that he’d lied to see my reaction. Then he’d wait until I believed that and go back and say he’d lied about lying. I never knew whether to believe the lie or the denial of the lie.
It was emotionally abusive, but still I went to him for comfort. I told myself I loved him because, if I didn’t love him, I guess, what the fuck was I putting up with all this for? But I also didn’t want him. I felt more like I needed him—and I knew he needed me—and I’m not sure what gave me that idea since, if anything, he needed me and I didn’t need him. It was a weird time. I was a young eighteen, and I was still trying to figure out what a relationship even was or what I wanted from one. I just knew that if a man didn’t want you, it was your fault, and if you wanted a man, it was your fault when the relationship went bad. I think I had to love him or perform love, at least, just to stay in it. To keep from admitting to myself that I’d been wrong and needed to break up with him. Because, if we weren’t in love, then no one loved me who wasn’t basically obligated to, and maybe I was only lovable to this one guy whom I already knew I didn’t want in my life much longer.
My relationship with drugs has always felt empowering and freeing or like some sort of opening in my brain, and my relationships with men have always made me feel trapped. On drugs, I don’t feel that I’m at risk of coming undone the way I do when I let another person into my life. So, my relationship to drugs runs almost exactly counter to my relationships with men. I don’t know what that means or how it fits in the love/want dichotomy. But this question is going to haunt me until I figure it out! (I’ll dedicate the essay to you.)
Rumpus: Do you think social media is helpful or hurtful when it comes to the issues you care about?
Long: It’s complicated. On Twitter, there’s this little pocket I call Chronic Pain Twitter, and we can often dispel myths or criticize bad policy. For example, when Kirsten Gillibrand introduced a federal bill that would have limited the amount of pain medication doctors could prescribe for acute pain, we flooded her replies with so many complaints and arguments against the legislation that she had to release a statement in which she clarified that the bill wouldn’t affect chronic pain patients. But, as we explained in more Twitter replies, every measure aimed at reducing the doses given to first-time opioid patients with acute pain ends up hurting people in chronic pain.
Social media is a useful way to spread information and build community. There are about seventy-five to one-hundred-twenty million people in the US who live with chronic pain, and something like twenty or thirty million of us are on long-term opioid therapy. It’s nice to have this app where you can find people who understand what you deal with every day. Plus, a lot of us are disabled in ways that make traditional protest difficult, so online activism is especially important for us.
Pain is often invisible, too, and we face stigma or reprisal if we openly discuss our pain and especially our painkillers at work or even with friends. Social media gives us a space in which we can be invisible to people who might use our pain or the drugs with which we treat it against us while, at the same time, making our pain more visible.
But Chronic Pain Twitter can be a mean place. It’s mostly patients, some doctors, and a good many researchers. Most can and do advocate for an end to the pain-care crisis caused by the government’s response to the overdose crisis, which has been to limit opioid prescribing—even though eighty percent of addictions start with recreational use, most people who’ve overdosed never had a doctor’s prescription, addiction rates have remained stable over the last century or so, and overdoses keep going up even though prescribing is at its lowest point in, I think, twenty years. This is all stuff I learned from studies and experts on Twitter. Researchers Maia Szalavitz, Michael Schatman, Terri Lewis, Brian Foreman, and Andrea Anderson, clinician/researcher Stefan Kertesz, and civil rights lawyer Kate Nicholson are some of my favorites.
Pain patients often dismiss or attack advocates over disagreements about, for instance, drug testing. Most opioid patients get drug tested randomly or monthly, and some hate it more than others. Or, the idea that cognitive behavioral therapy is a useful tool. Patients gang up on the advocate. I say, “We can’t alienate all our allies,” and the other patients decide that the advocate and I (or anyone else who doesn’t throw their shit at the advocate) are DEA plants or getting paid by buprenorphine manufacturers or whatever. Some patients on Twitter think this is all an orchestrated, genocidal conspiracy against disabled people (conspiracies are comforting, but it’s more likely a perfect storm than a smoke-filled room), and sometimes they accuse people who disagree with them of being part of the conspiracy, which is another reason it’s so important that we have experts in there. I’m always surprised they keep coming back!
A lot of pain patients also can’t stand other drug users. They blame illicit opioid users for our problems, and that scapegoating often leads to cruel, stigmatizing talk that just makes us look like selfish assholes with no empathy. And I get it. It’s hard to trust experts when so many have let you down or treated you like shit, and it is hard to watch other drug users get resources and help that we don’t. But some of my favorite people are or have been non-medicinal drug users, and I’d rather work with than against them.
Chronic Pain Twitter is often useful but just as often runs counter to our goals. But it’s also full of great people doing great things—one patient/nurse collects the names of patients who’ve committed suicide after being taken off their meds (#suicidedue2pain), for example, and I’ve gotten serious help from doctors I know via Twitter. Patients have created at least one nonprofit and even got a law changed in Rhode Island. But social media can also encourage circular firing squads or, like, mass foot shooting. I try to not get too caught up in it because it makes me feel more hopeless and stressed and too focused on my pain.
Rumpus: If you could rewrite one scene in your book how would you, and why?
Long: I can’t really think of a scene I’d change, but I think I might have hammered harder on the idea that addiction and dependence aren’t the same thing. Most people know what addiction means, and fewer people know what dependence means. I’m dependent on opioids, which means that my body has learned to expect the drug and doesn’t make certain substances or carry out certain processes on its own because it gets those things from my painkillers; when you go into withdrawal, that’s your body not getting what it’s used to getting and having to relearn how to do all of the things the drug used to do.
There’s nothing inherently wrong with dependence. I’m also dependent on my blood pressure medication (I could die if I go too long without taking it), and no one would ever say that I’m “addicted” to clonidine. But so many people think I’m “addicted” to opioids simply because my body needs them to function normally now. When you take a drug every day—especially one so stigmatized and closely associated with overdose and problematic use—people think you’re addicted in large part because we have such a puritanical approach to drugs in the US. But you can be addicted to a substance without being dependent on it, and you can be dependent on a substance without being addicted to it. “Addiction” comes up a lot in pain management contexts in part because pain patients have to prove that we aren’t “drug-seeking” or addicted to opioids but also because addiction and dependence are so often conflated.
I underestimated how personal and rigid people’s opinions about opioids are, so some reactions to the book have surprised me. I’m surprised by how often people come away from it with the idea that I’m addicted at any point in the story. I don’t get physiologically dependent on the drugs I do with David (if I did, I’d have had to detox when we broke up) and am not addicted to the drugs I take for pain relief now or in the book’s present. There’s a scene in the book when I’m explaining to an on/off lover and to the reader that I “have to obsess” over my painkillers; in it, I write, “Pain management requires discipline,” and that I can’t take as many pills as I need to never be in pain or my prescription won’t last through the month. If I were addicted in the way we typically think of addiction, I wouldn’t be able to do that; I’d take all my pills in two weeks and have to buy heroin or spend half the month in withdrawal. So, I guess I would make it clearer that I don’t have addiction issues.
On the other hand, I wanted to give readers the choice to believe in my pain or not, to make up their own minds about what I’m doing with the drugs I take. And I don’t want to be so precious about the distinction between addiction and dependence that I’m saying, “I’m a respectable pain patient who takes medication. I’m not like those dirty junkies who do drugs.” The book does blur that line, but I might have also underestimated the degree to which our ideas about drugs, drug use, and addiction are oversimplified. It’s nearly impossible to write about taking drugs regularly and not have your work fall into the “addiction memoir” genre (which is, admittedly, one of my favorites). It’s kind of cool, though, that the book gives me an opportunity to explain all this stuff to readers (and interviewers!). I didn’t want to be heavy-handed about the “different sort of addiction” idea, so I’m not sure I’d want to give readers more information than I already do.
Rumpus: I’m curious to hear more about your thoughts on the line between a substance use disorder and other types of drug use.
Long: That is a good but complex question. Some friends who work in drug policy reform have told me they’re still trying to figure out a good way to describe the kind of drug use I did with David—like, “recreational” isn’t always right, but neither is “abuse.” You can do drugs and be safe and smart about it and not let it take over your life. Most people age out of hard drug use around twenty-five or so, and I assume I would have, too, if I hadn’t started taking opioids for pain relief when I was twenty-five. Drug use isn’t binary, either. Lots of people—and I include myself in this—can use drugs responsibly and relatively safely in the same way that some people can drink moderately or socially, and some people can’t. If we think of drug use as a spectrum with total abstinence on one side and physiological and psychological dependence on the other, most drug users fall somewhere in the middle. Only the person using the drugs can make that assessment.
But, in general, the definition of addiction (or of a substance use disorder, as we say now) goes something like “continued use despite harm.” So, David has a substance use disorder (SUD) not because he was physiologically dependent on opioids but because he kept using them even after he’d been to jail multiple times, developed health problems, ruined relationships—that’s addiction. I’m lucky I have whatever keeps me from reaching for the pill bottle every time I’m in pain.
Some people would say that addiction and medical dependence differ in that I take opioids so I can participate in society, and someone with a SUD uses drugs to escape society. But people take drugs for all kinds of reasons—to have fun or stay well or in response to abuse or trauma—and it’s not my place to judge or speak for other drug users. And I do call myself a drug user. I use drugs to treat my pain. A lot of pain patients disagree with that characterization; they say that we take medication, not drugs, but I feel like that stigmatizes other drug users. As though people with prescriptions from pain specialists get the more respectable medication, and those dirty junkies over there get drugs, you know? And it does none of us any good. Our common enemy is prohibition, and we’d be better off working together to end that.
Photograph of Amy Long by Steve Mangum.