Amy Long is operating in a world of obstacle, behemoth and power greater than most would muscle against. Strong, diamond clear and intact. There’s the work. I don’t envy her the weight, but do admire.
We were talking the other day about memoirs, and you were quick to specify this as “a novel in essays.” Where is that line for you on that, and how do you draw it?
I think I said, “I don’t like calling it a memoir. It’s an essay collection. I call it a novel in essays,” but you’re right; I know it’s technically a memoir, but I think of it as an essay collection with a novelistic arc. I used to call it “Codependence: A Novel in Essays” because I thought it sounded cool, and the shape the narrative takes feels more like a novel than a memoir to me—the book is nonlinear, but if you put the threads together, you can create a chronology. I’ve gotten pushback from people when I’ve said this before, but in general, memoir as a genre implies a kind of closed arc. Especially in addiction or illness memoirs, the story usually goes, like, I had a problem. I overcame it. I’m better now. Here’s what I learned. And I hate that. It’s not how life works, it’s boring, and if I’d had to wait until I “overcame” chronic pain, I’d never have been able to write the book; I don’t foresee a time when I won’t be in pain. But, mostly, the book ends without a real sense of closure or resolution. I’m not in a different position than I am in the first essay. I’m still on opioids, still in pain, still sort of hung up on the romantic relationship that takes up about half the book. And that’s a perfectly acceptable ending for a novel, but it’s not what readers expect from a memoir, which is where the “novel in essays” came from. My editors and I took off that subtitle because other people told me it confused them and would make them not trust me as a narrator, and I’m on drugs the whole time, so I’m already unreliable enough as a narrator without that “What’s real?” question hanging over the book in a way I didn’t intend it to. I have this kind of obsessive need to tell stories exactly as I remember them happening—I would have fought my publisher on changing names if I hadn’t known I’d lose! It’s silly, but even the names matter to me, and I’m not sure why—so I didn’t want the subtitle to imply that I wasn’t telling the truth (or, really, my interpretation of it). If it’s not a “true story,” the stakes seem lower, I guess. But, mostly, the memoir/essays thing is a way in which I see the book as different from typical drug memoirs: I’m not “recovered” at the end, and in a traditional memoir, I would be.
You also mentioned not coming across many books addressing current opioid or chronic pain issues that correlated much with your experiences. What in particular do you find unaddressed, and what do you feel should be more in the general discourse?
Yeah, I’ve read some books I love that relate to chronic pain or illness—Sonya Huber’s Pain Woman Takes Your Keys, Amy Berkowitz’s Tender Points, Karen Havelin’s novel Please Read This Leaflet Carefully—but none of them focuses on opioids, and none of them deals with headaches, which I don’t say to take anything away from those books; they’re really important. But headaches are a really specific type of chronic pain. It’s just so impossible to ignore, and few doctors or people in general take headaches seriously. People think they know what it’s like because they’ve had a headache, but it’s not the same when you’ve had a headache every day for a dozen years. Mostly, though, it’s the opioid thing. We’re at a point right now where pain patients are being denied adequate doses, cut off entirely, and even killing themselves rather than live in pain. People don’t talk about the way the overdose problem has affected pain patients. Pain management is constricting enough when you have enough painkillers to get you through a day or to dull the pain enough so you can write—I mean, you have so little wiggle room in terms of how many pills you can take no matter how badly you feel that you have to totally structure your day around your dosing times (or, I do)—but now that every appointment might be the appointment at which your doctor takes away your ability to function, it’s just gotten so stressful, and I think people who take opioids as part of their pain management regimens deserve at least the voice that people who struggle with addiction have. Like, go to a bookstore and tell them you want an addiction memoir, and they’ll have enough of those books to make an entire section out of them, but you’re not going to find a book like mine—about drugs and pain—or you’re only going to find books in which the protagonist gets sick and gets better or one in which maybe she doesn’t, but she’s not talking about her past recreational drug use, which I wrote about in part because it fucks with the mainstream “epidemic” narrative, which says that doctors wrote too many opioids, patients got addicted, and they turned to heroin. But—and I can’t get into all of it or it would take up the whole interview—most people who use heroin now didn’t start with their own opioid prescriptions. It’s just an easier narrative for policymakers because doctors are a lot easier to control than drug dealers, and we’re never going to eradicate addiction; going after doctors and patients makes the government look like it’s doing something when, really, it’s all just fucking theater that keeps us from demanding solutions such as legalization or decrim or harm reduction, which actually work. I don’t fit into either narrative. I didn’t get addicted when I did drugs with my boyfriend in late high school and early college; when we broke up, I just quit taking pain pills. I went back to them because I was in pain. I knew I’d get dependent on them, but it was worth it. I think it’s important that we acknowledge that people can use drugs in non-problematic ways, but I think it’s much more important that people in pain get to see themselves and all the things—including their fears about doctors and opioid regulations—represented in literature. It’s at least, maybe, a step toward the tide turning so we don’t risk losing our quality of life every time we go to the doctor. For people who aren’t in pain, all this stuff is really a nonissue. Like, #CVSdeniescare was trending yesterday on Twitter because they’ve been denying birth control prescriptions. But CVS and Walgreens have had ridiculous opioid policies for years, and that never trended on Twitter. The only people who care about this issue are pain patients and some doctors and researchers. It’s dangerous that our discourses around addiction hurt millions of people (something like 50 million Americans are in chronic pain), and the general public mostly has no idea.
How central a theme do you find the relationship dynamic depicted in the book and its import to the framework of the collection? To what degree do you find it to be part of the narrative, or is it more of a tributary?
It’s kind of both. In a way, it has to be there because it’s how I started doing drugs. My first opioid was a methadone pill I took with David, the boyfriend with whom I have the relationship you’re talking about. I also felt like the book needed that second tentpole; if it were just the pain stuff, it could have felt a little one note. It was important to me to paint as clear a picture of our relationship as I could, and if I was going to put David in there at all, he had to be a full character. He couldn’t just be that shitty guy who got me into drugs. In order to do that kind of character building, David had to take up more space than he maybe deserves. But it was my first serious relationship, and it’s informed or somehow tainted every one I’ve had since; our dynamic was formative for me, and it informs more than just my romantic relationships, and I wonder if some of my behavior might be inexplicable to readers if they didn’t know what happened there. People didn’t use this terminology when David and I started dating in 2003 (or, I didn’t, and I don’t think it had the place it does now in our cultural lexicon), so I didn’t know to call his treatment of me “emotional abuse” or “gaslighting,” but it was, and that dynamic—this just occurred to me now, weirdly—sort of mirrors the relationship pain patients have with doctors. In the book, I have three major “good” doctors, and they’re all exempt from what I’m about to say, but other patients and I find more and more that doctors dismiss our pain, imply that we’re junkies with mandated urine screens or pill counts or whatever other hoop they can put in front of us, and abandon us when they no longer want to write the doses or drugs we need. Or we get our scripts denied by pharmacists, so we’re scared of pharmacists, too. I mean, I’m terrified of my pain doctor, but I’m also scared of losing him, and that fear and instability are similar to what I felt with David; I was always scared I’d lose him, but he was also a huge source of stress. I can’t say I put that in there intentionally, but now that I’ve thought of it, the parallel is interesting, and it might be what makes the book hold together for me.
That I did drugs with David also informed my choice to use narcotics when my headaches started up again in 2008 (the mom tells me I’ve had them since I was three, but they weren’t disabling, or maybe I just didn’t know I could do anything about them, until my mid 20s; my drug use might also explain why I thought they went away when I was in college). Because I knew how narcotics would affect me, I felt safe taking drugs that most people think are much more dangerous than the preventive meds I’ve tried, which scared me a lot more. It’s also important, I think, that I learned how to doctor shop with David. I’d go into doctors’ offices with him and watch him tell a fake story about a car that fell on him and pinched a nerve, and he’d get pills, and then we’d go again to some other doctor and get more when he needed more (this was before we had prescription drug monitoring programs). I’ve used some of his methods to convince doctors that I’m really in pain and that I’m a good candidate for opioid treatment. I don’t mean that I tricked the doctors or that I’m not really in pain, but I knew how to present myself to them, and if I didn’t, I’m not sure anyone would have written me opioids. David is also a major reason why my family and friends mostly dislike that I treat my intractable headaches with opioids. I think, if I hadn’t dated him, I wouldn’t have gotten so much pushback on that from other people in my life.
So, in some ways, the essays that focus on the relationship are less about the relationship itself than they are about its lingering effects on me as a pain patient and a person. The relationship dynamic also gives readers a familiar identification point; like, maybe someone can’t identify with drug doing or pain management, but everyone has had a bad relationship. Maybe it’s also a Trojan horse. I know it sounds weird, but I didn’t think about it that much. I knew these two stories had to go together and that the juxtaposition created some meaning I couldn’t have made otherwise. I can’t tell you what putting the two things together does; I really don’t know. It just felt natural and obvious to me as I was writing.
A friend of mine was going to put together a zine a few years back that collected hospital horror stories from folks we know. Any good ones on your end? Pain-management doctor crises that didn’t make the cut.
Oh, god. Yeah. So many. Most of the worst ones have happened after I wrote the book. I saw a neurologist in Austin who told me that she “treats people who are in real pain,” implying that my pain isn’t serious. Her office manager saw me crying and asked what was wrong and gave me my copay back, but it wasn’t about the copay; it was the dismissal. Like, I know there are people who are in more pain than I am, but it’s not a contest; I’m still in pain! This isn’t really a horror story, but what bugs me most is the lack of empathy doctors show now. I was used to getting my opioids from primary care doctors who took an interest in my case and actually wanted to help me. But, when I left Virginia in 2016, the CDC had just released a new, stricter prescribing guideline that’s purportedly voluntary and not applicable to patients in chronic pain but has totally fucked all of us anyway (it’s written into laws in, I think, 33 states; insurance companies use it to punish doctors who write doses higher than the guideline dose; and I’m pretty sure the DEA uses it to flag doctors as “overprescribers”), and after that, primary care doctors basically quit writing opioids longterm. Now, they send you to pain doctors. Pain doctors are mostly anesthesiologists. They do these insanely expensive injections that I’ve already tried and failed (I had one say, “But you haven’t tried them here,” and I was like, “Do you use some special method other doctors don’t know about? It’s the same procedure!”). They just want money. They don’t ask about your quality of life or your goals for pain management or anything. They don’t know you, and I was used to my doctors knowing and caring about me. It’s really the feeling that I’m not a person anymore and don’t have any say in what happens to my body that bothers me more than any one thing a doctor did.
Who you got in the debates?
Tough one. I’m a single-issue voter now. I’m voting for the person who shows me that they’ll at least listen to pain patients. I can’t vote for Marianne Williamson because I heard her tell Seth Meyers that overprescribing caused “the opioid epidemic” (a phrase I hate), which research just doesn’t bear out and is a super harmful narrative for pain patients who take opioids. A lot of my disabled and/or chronically ill friends are really scared of her, too, and I wouldn’t do that to them, but sometimes I think that only another batshit person could beat Trump. I saw something about Andrew Yang having said he had our backs and then kind of pulling out of that promise, but I like his $1000/mo UBI idea, and he’s a libertarian tech bro, right? They’re usually pretty okay on drug policy. But I’ve heard the same thing about Pete Buttigieg—that he knows about the problems pain patients have now and wants to fix them—and he seems like the kind of person who would listen to statistics that tell us that, as prescriptions decrease, overdoses increase and try actual solutions instead of fixating on doctors and patients and pretending that prosecuting them will solve the overdose problem. So, I think I’m going Buttigieg.
Amy Long’s book tour will take her to Pete’s Candy Store on Saturday, September 14th at 6:00 pm.
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