I wrote this book 'cause I wanna say yes, this affects people like my family, right? Two professors, Educated. Yes. Right. Access to all kinds of care. Yeah. Tons of friends, right? It's not just the people who are, you know, sitting in the bed. This happens to people like us Dr. Patricia Bruce was a sociology professor at Rutgers University when she lost her 25-year-old son, Alex, to a heroin overdose for years. She did everything she could to help him navigating a difficult battle with substance use disorder, watching him as he cycled through a dozen different treatment programs. Along the way, Patricia says, Alex wasn't just fighting addiction. He was also burdened by stigma and shame, including within the medical system that was meant to help him. I remember Alex called me and, and he said, ma, mama, they're calling me a psychopath, an a sociopath. And he was outraged. In her new book, surviving Alex, Patricia weaves together her personal story and her professional background to take a hard look at what we're getting wrong when it comes to addiction. She also talks about why many people ask for help and still can't find the support they need and how those gaps in care result in deadly consequences. We tend to blame those who are, uh, have, uh, substance use issues for their own choices, right? That's the single most, uh. Important explanation that we all, I mean, it's not just, you know, the other people out there, it's that we all have those kind of explanations. They chose it, right? It's so sad, but they chose it and they could have done something else about it. Today on Grieving Out Loud, I'm joined by someone who brings both a mother's heart and a sociologist's insight to the conversation about addiction, loss and stigma. Dr. Patricia Rus is a professor emerita of sociology at Rutgers University after losing her son. Alex to a heroin overdose. In 2015, she shifted her life's work, turning her grief into activism. Her new book, surviving Alex, a Mother's Story of Love, loss, and Addiction, weaves together her personal story with her professional expertise to examine how stigma and equity and lack of compassion in our healthcare and treatment systems can lead to tragedy and how we can do better in our conversation. Patricia opens up about her journey as both a mother and a researcher, what she's learned from the painful experiences of trying to help her son, and how she's using her voice to call for a systematic change and a more compassionate response to substance use disorder. And Patricia, thank you so much for joining me on grieving Out Loud. Well, thank thanks for asking me and please feel free to call me Pat, that's what everyone else does. All right, pat, I am anxious to hear about Alex. Could you tell me a little bit about your son? Sure. was, um, really the light of our lives. He was a, you know. Easily born, easily raised until he got older. Uh, but um, he was just, uh, so smart and so, uh, good looking and you know. Just had so many friends, you know, the life of the party. Uh, just a, a singularly, uh, you know, interesting, uh, smart, but also sensitive. Uh, and Hmm. this is something where when I talk with parents, uh, who have lost their. Kids or who have kids who are um, uh, addicted to or have use, have substance use issues, always say the same thing. He was so sensitive, or she was so sensitive. And I always think that, uh, uh, that it's almost too sensitive for this world, because it's like, how do you keep these kids, uh, um, you know, these wonderful kids, from. Doing drugs. In more than 250 episodes of grieving out Loud, I've talked with many parents who've lost their children to substance use disorder or just experimenting with drugs again and again. I hear the same themes, bright, talented kids who felt things deeply, who were sensitive, creative, and carried big emotions. Juliana Arnold is one of those parents. She lost her 17-year-old daughter to fentanyl poisoning. Coco was. Vivid lively ball of the ball, you know, always out there making jokes, cracking jokes, having fun. But then there was also this very sensitive side of her that was really empathetic and you know, she'd see a homeless person on the street and she'd just want, she would go up and give them something, or she would be reading about, you know trafficking of girls or those type of issues were really, really front and center. Even when she was like, I don't know, seven or eight, I found her, she got ahold of my iPad and was watching a video of orphans in Bulgaria and she's like, mom, I just don't understand why there has to be so much suffering. Patricia says she's researched both the outside forces that can pull someone toward drugs, things like availability and peer pressure, and internal factors such as mental health disorder and personality traits., is self-medication of something, right? There's something in our kids that, uh, lead them to need that, uh, substance and sometimes. Uh, young people find alternative strategies, uh, to, uh, address that need for self-medication, like exercise you know, if not, I think this is something that, uh, that you need to be aware of, uh, that if in fact. your kid is having issues where they're anxious, um, or depressed, right? That's when they start turning to self-medication, right? Something that's going to take away the pain. you know, and I think in Alex's case, there was a lot of, uh, anxiety, uh, sort of along the way, from when he was a young age and obviously, uh, because. He developed anorexia when he was 11, uh, 12, 12 years old, While many associate the eating disorder with females, roughly one in three are male. According to the National Eating Disorder Association, and disordered eating behaviors are an increasing factor among males, then females. you are the second parent that I've talked to whose young son developed anorexia, and I always think of this as a, a problem for girls, right? I mean, think we all do. So when did you realize this? How did you figure out that this was what Alex was going through and what did you learn about it as you, you know, got sought help for him? well it was that big blinking red light that says this kid needs therapy of one kind or another. Uh, that because. This is an issue that clearly, uh, was, uh, you know, something that we had to pay attention to. And it came all of a sudden, right? It was just like was 12 years old. He was on the tournament baseball team and he was excellent. You know, he was a athlete as well as everything else. then it just came all of a sudden, uh, and I realized it. Almost in retrospect when I started to write my book that, um. looked at all the, all of our pictures and he wasn't smiling. Uh, he I, stopped smiling. you, you're kind of aware of it, but when that's going on, you are not as Hmm. of when you go back and look at it and you think, uh, you know, he didn't. He just stops smiling. Uh, and he stopped eating. Um. Uh, almost entirely cut back and cut back. He thought he looked, it was a kind of classic case of anorexia. He thought he looked chubby. Uh, Hmm. he asked my husband, uh, you know, do I look chubby? You know, look at this picture. There was this picture that it became a kind of critical picture where he looked at it and he said he thought he looked overweight. and of course he didn't because what do we know about our kids who are athletes? Is that they, they, they might get a little chubby, but then very soon they grow outta it. right. When they're growing, I. as parents, but it's hard to, uh, express that to young people that well. You play baseball, you do karate, right? You do all of these sports and you'll grow taller and you'll grow out of it. But that was something that very, that he, angsted over. Um, And. the girls didn't, you know, the girls didn't like him, um, anymore and he thought that they liked other people. And you could just see the anxiety building. And anorexia is about control, right? Exactly. Exactly. if you can control the food. I looked over, uh, a lot of diaries that he had along the way, and one of the di it's not, it's not an official diary, but he wrote notes because whenever you're in, uh. Therapy and institutionalized. Right. They always want you to write. I looked, I didn't see some of the writing until after he died. Uh, and exactly what he started, you know, he just started wanting to control and if he could control what he ate, that was, that meant he was in control of something. Right. so, um, you know, it's not just, we think about it as girls and certainly. He thought about it, he, because he was embarrassed about it. Right? When Hmm, of got over that part of his life, he was embarrassed. He didn't like people to know. Are you ready to protect the next generation from the dangers of substance use? Emily's Hope has created a comprehensive K through 12 substance use prevention curriculum designed to educate, empower, and equip students with the tools they need to make healthy choices are age appropriate lessons, starting kindergarten and build through high school using science, real stories and interactive learning to help kids understand their bodies, brains, and risk of drug use. We're already reaching thousands of students across multiple states, and we're just getting started. Visit emily's hope edu.org to learn more and share our curriculum with your school administrators and counselors. At Emily's Hope, we believe prevention begins with education. Let's work together to keep our kids safe. Patricia says her son's condition became a matter of life or death. By the start of the seventh grade, his weight had dropped to just 68 pounds. At one point he went to the er and the doctors were not sure that they could bring him back again if his heart stopped. So it was, it was serious, uh, and he was losing weight as opposed to gaining weight. that's when Alex entered a seven week inpatient eating disorder program, followed by six weeks of outpatient care and months of therapy. Patricia was extremely relieved because it seemed like the treatment was working. Within about six months, he was sort of back in his. His friends were fantastic because they just took him right back in again, uh, and they gave him all the support. The people who ran the school gave him support, and so it was, it was really a win-win, uh, in terms of being, getting that support from all of his, know, ecosystem, so to speak. And I bet you felt like you were sort of outta the woods then, like you had, uh, tackled this problem, you know, solved it as much as best you could. And moving forward with his life, he seemed to be doing well again, but things changed. Yep. It was he, we didn't. Early on, but he said, he then told us that within, uh, a few months of coming out of the eating disorder unit, he, um, started drinking, uh, you know, found some drinks at a friend's house, started drinking, Unbeknownst to her, Patricia's son also began experimenting with marijuana in high school. At the same time, Alex was thriving in many ways, a standout baseball player with dreams of becoming a doctor. He went on to graduate from college with a major in biology and a minor in computer science. But alongside those achievements, his substance use quietly escalated. And during college, Alex began experimenting with pills He graduated from college in 2012 and one of his friends came to us in 2013 and said, I think he is doing, um, heroin or some sort of opioid. What was your reaction to that? Because the one thing, like I didn't know that my daughter had graduated, so to speak, to heroin. I would never have, my mind would never have even have gone there.'cause to me that was such a powerful drug that, you know, people, people like my daughter or your son didn't use. You just think, aren't they smart enough that they wouldn't do that? Right. Yeah. if you think about it as, as self medication, right? Uh, I mean, uh, won't talk about your daughter, but certainly my son it. He saw himself needing it. and no matter what we did. It really, uh, didn't make any difference. He went to 12 separate rehabs, right? Oh we constantly addressed this issue of, you know, why are you doing this? it was pretty easy to tell. And this is what I try to make clear in my book, is that, you know, you begin to recognize the symptoms, right? Like nodding out, uh, you know, if they're at dinner. and they nod out. Um, and, um, just became so obvious as Alex battled substance use disorder. His life was marked by additional trauma with the deaths of both his aunt and uncle. The very summer that Alex graduated from college, Chips. My husband's brother died and we took on their children who were 12 and 16 at the time. The losses kept on coming. Alex soon lost his grandmother and shortly afterward, he experienced his first drug overdose. He was in the basement because, the other kids were upstairs. Um, and coming in and, and having, we had to take the door off and he was there with the heroin bags next to him. Uh, and so that was the proof, right? That he was on heroin. Um. how was he saved that time? Him? Uh, he woke up. So Oh. was not Narcan back at that Right, right. I'm thinking there was like intravenous Narcan, you know, Naloxone intravenous, but like the nasal spray, I mean, it wasn't No. a, people didn't have it. didn't carry it around. So we had the local police and they came in they didn't, you know, they said, throw this away. We considered him a victim at this point. and we took him to the hospital and, um, he walked to the ho the ambulance because he kind of woke up on his own. That overdose was the first of four that Patricia knows her son experienced. It also marked the beginning of a long cycle of treatment. 12 different programs in all where she says, Alex didn't just battle addiction, but also shame and stigma sometimes coming from the people who were supposed to help him heal. Alex was certainly, uh, taught to feel like he was just an addict, right? I don't tend to use that term addict because I think it's, uh, negative in a way that we don't need to talk about Dehumanizing. Suffer. Yeah. Dehumanizing. Exactly. The worst one was when he was at a psychiatric, uh, hospital. within a week. Uh, those, the psychiatrists, the social worker, not so much the lower level staff people, but the people who really matter, who are making the decisions, decided that he was beyond help. This was a four week program and within one week they had already consigned him to the ash heap of addiction. Um, you know, calling him a, uh, addict, uh, that was the easy one. they thought, but also a sociopath and a psychopath. And there was really, of all, those diagnoses don't even exist the, in the larger, uh, you know, psychological, environment. So it's not even that a real diagnosis. And yet. This psychiatrist was using this terminology, and I remember Alex called me and, and he said, ma, mama, they're calling me a psychopath, an a sociopath. And he was outraged. Um, and he had a run in with his social worker, uh, early on in that first or second week. So that you felt like they had already made up their minds about him and decided that he was not gonna make it in that program. They used words to that effect. worry, I, we hope he can, he can, this program will have, make some difference to him, but, but it may not. And So he was, he was really set up to fail. Yes, exactly. Exactly. Which is so tragic. I mean, it's. and then people internalize, you know, what is be, especially somebody who's already feeling shame for what they're doing, right. and then they internalize the experts, whatever the experts, however the experts treat them or whatever they say to them. I mean, it's just so sad. Well, Alex got irritated at them, which was I think, much more positive. You know, just feeling, I mean, you are absolutely right that, that, that there was sort of more shame, heed upon, more shame because he certainly felt that shame. But he, but this, he was just, he did not like, um. Any, almost any, there were a couple of rehab programs that I think, uh, uh, were useful for him, but mostly the rehab programs were not useful. Um, and, uh, you know, there's another example that I talk about in that article where before he died, uh, he, they sent him down to Florida. Um, and that was the last rehab that he was in. And, um. He did what all people who have substance use issues do, right? He got access to,, um, drugs and drinking and, uh, Xanax. He walked into a, uh. Uh, an urgent care facility and the doctor within 20 minutes gave him 90 Xanax and, uh, 30 Ambiens off the street, knew nothing about him. And I have all that paperwork because one of the things sociologists do is look at the receipts, right? Look at the paperwork associated, uh, and I had that from. The, the psychiatric hospital, but also this small urgent care place. I know exactly the paperwork that they filled out and you know what they put in all their, um, uh, files. Uh, because I got access to it as Alex's medical heir I had access to all of that information. and that was. Incredibly useful because I was able to see in the words of the psychiatrist and the social worker and all the people who worked in the psychiatric hospital, what they were saying, what they were putting in the, um, for their institution. I'm sure they. Were not happy if they've seen what I've written to, You can learn more about Patricia and her book, surviving Alex, a Mother Story of Love, loss, and Addiction by checking out the show notes. For this episode. We've included a link to her website where you can find her book, and while you're there. We'd appreciate it if you just take a moment to rate and review this episode and share it with those you care about. Every listen, share and conversation helps raise awareness about the opioid epidemic and reduce the stigma surrounding substance use disorder stigma that too often keeps people from getting the help that they need that could save their life. I think it's really the institutions in our society that are failing. Um, always talk about it as being a personal choice, right? And we tend to blame those who are, uh, have, uh, substance use issues for their own choices, right? That's the single most, uh. Important explanation that we all, I mean, it's not just, you know, the other people out there, it's that we all have those kind of explanations. They chose it, right? It's so sad, but they chose it and they could have done something else about it. So that's, you know, still if you watch movies and stuff, Oh, exactly what media comments, you know, I mean, it's everywhere. Yeah. and it kind of, it began to change somewhat historically, if you look at it over time, that there was then this movement to a brain disease. Right. Which is better to think about it that way, right? In the sense that you think there's some kind of issue there. That's, that brain disease then assumes this idea of total compulsion. That Right. take that one that one that very first time, it's all over. But I just think it's really as a sociologist, right? What I think is really going on is that you need to take into account context, right? The context in which those choices are made. Choice is still there. No question about it. But we need to think of that context like. If they're taking, drugs for self medication, right? One way or the other, then we need to understand, right? Is it a psychological issue, right? Is there is, is it trauma? Is it socioeconomic kinds of factors that Right. It's that context that we need to take into account. It is the social psych, psychological, uh, all of it together, right? So it's not just like, oh, just something's wrong with your brain, and that's it. Oh, it's a choice, and that's it. It's, it's a, it's a function of what's happening in their lives, what's happened in their past, uh, all of it, their personality traits and, and obviously brain chemistry and wiring have something to do with it, Have you lost a loved one to overdose or fentanyl poisoning? I'd like to invite you to share their story on our new Emily's Hope memorial website called More Than Just a Number. They were our children, siblings, cousins, husbands, wives, aunts, uncles, and friends. So much more than just a number. You can submit a memorial today on more than just a number.org. Addiction is widely classified as a chronic brain disease by major medical and scientific organizations, including the American Medical Association. But for many people, public perception and even parts of the treatment system haven't fully caught up. In a previous episode of Grieving Out Loud, I spoke with Trent Carter, a nurse practitioner who saw those gaps up close. After witnessing how hard it was for people to access compassionate effective care, Carter decided to do something about it. He opened a rehab center that has since been recognized by Renew Health as the best drug and alcohol treatment facility in New Mexico. I view addiction as a chronic disease. I think that that is very commonly accepted here Western medicine. That's the way we view it. So how do we treat other chronic diseases? Well, blood pressure or diabetes or high cholesterol, you name it. I think first and foremost. It starts with lifestyle changes. Start exercising, change your diet and nutrition, right? Change your sleep, stop drinking alcohol, things like that. So after we implement those changes, then follow up with whoever that doctor was or medical provider was, and then you evaluate how it's gone. Hey, have you done these things? No, I haven't. Or, yeah, I kind of have, but we're unsuccessful. Your blood pressure's still high. What's usually the next step? Medication. Okay. Then over time that medication dose may go up because it could worsen, it could remain the same. Or maybe they've actually started to implement some of these lifestyle changes and the medication dose could go down and ultimately they could come off. It's the same thing with MOUD or Suboxone. So right off the bat, I think that we need to look at lifestyle change, that environment, change these habits, change our routines, change our mindset, and if we're not able to, Suboxone is very appropriate. It's very safe. It's very effective. It changes that person's life, it changes their family. It changes the community that they're around. And if they need to remain on it long-term, so be it. In addition to changing how society views addiction and reducing stigma, Patricia says one of the most urgent needs is earlier access to harm reduction, especially Naloxone known as Narcan. If we can think about how we keep them alive. Right. why I think the whole focus on harm reduction kind of approaches, uh, as opposed to criminal justice kind of approaches. What I see is the need to move toward approaches that are public health oriented, not to criminal justice. And I think, when I say what could have happened, I think if we lived in a society where, uh, we didn't. Throw people in jail for substance use issues, but rather we give them treatment. Harm reduction, including Naloxone has been in the spotlight recently after Health and Human Services. Secretary Robert F. Kennedy Jr. Outlined details of a new nationwide initiative. In discussing the program, Kennedy criticized. What he called misguided Biden era policies including harm reduction efforts. However, many public health officials point to expanded access to Naloxone as a key reason. The drug overdose deaths have dropped over the last couple of years. Patricia agrees. It's because of harm reduction in large measure. There are other kind of explanations too. Mm-hmm. into, know, what accounts for this? But one important reason is that we moved to a harm reduction approach, uh, that was successful. Right. and that didn't even exist. I mean, I learned about harm reduction. Um, after Alex died, I Of course, it. It, yes. even in my realm of consciousness. And I'm a good researcher, Well, I, I felt the same way as a journalist with my daughter dying in 2018. I'm, I'm a good researcher. I had just started talking about fentanyl. I was doing stories about heroin and overdoses. Nobody was talking about Naloxone or Narcan, nobody. no. And so, um, our children unfortunately died at that time when it wasn't available. And I know other people's. Whose children are now alive because of it. They may not, they may not be doing great, but they're alive, which means there is hope for recovery. Exactly that. If you can, if you can, if you can get them, if you can save them, if you can give them more years, then they may come to it of their own accord. I Right, right, they have to get to the point where they're ready. no question right. about it. Um, but you gotta give them that chance because, I mean, you know, it's like these, one of the things that I think you probably must feel this way too, is that. I, I wrote this book 'cause I wanna say yes, this affects people like my family, right? Two professors, Educated. Yes. Right. Access to all kinds of care. Yeah. Tons of friends, right? It's not just the people who are, you know, sitting in the bed. This happens to people like us and like, what? That's why I wanna be, I mean, when I, I don't know if you felt this way, but when I was, when Alex first died, people weren't even putting anything in obituaries, uh, about why died, Mm-hmm. I just, to me, I had to be outspoken. I had to let people know because I wanted to say, this happened to us. Right. Uh, and I think you're doing the same thing. You know, you're very Right, about it. And I think that that's what's really important to do that. That stigma is something Patricia says she and her son ran into again and again as they searched for a recovery program that would truly help Alex. Finding the right support was a constant struggle toward the end of his life. Alex tried another program, this one, farther from home in Florida, hoping it would finally be the one that worked, but once again, Alex faced the same battle and ended up overdosing. When he was sitting in a hospital in Delray, um, having the, having the, uh, nurses, you know, so inhumane to him, you know. We gotta get this addict outta here. I'm not gonna feed him anymore. I mean, just, it just broke my heart to read. My, my sister-in-law had gone in with him and, and talked with the nurses and knew, we talked to the doctor, they knew he had a family, uh, who loved him, we just arranged to bring him back. Um, and, uh, we, we did, we brought him back home and, uh, you know, then it was just sort of. Deterioration and, uh, up, you know, he ended up in Newark, which is a big, you know, big town in, uh, Northern New Jersey, right across from New York City. And, uh, he, uh, we thought he was going to, what would've been his uh, but he told them he wasn't going to, he got back on the train and he went right through our town. Back to Newark and then disappeared. We didn't know where he was. And then, um, no, I think he died on Mother's Day. know, Oh, that's from the timing of it. Uh, but it was the day after Mother's Day when the police came and told us about it. So he died in Newark in Newark? on Mother's Day, and I'm sorry, the last day I saw my daughter alive was on Mother's Day, and it makes it such a. What is it about Mother's Day? I don't know. It makes it such a difficult day, even though I have other children, and I, it just, it, it just is, it's the worst. Yeah. brutal. Brutal is what it is. And, and now all these years later, you, you've pieced everything together. You've relive it all many times. I'm sure you wrote this book called Surviving Alex. Why did you call it that? Uh, I wanted. to know that you can survive the worst. Uh, Hmm. so, I spent years and years trying to figure out how to do it, you know, when, uh, I mean, it's so interesting to me to talk with. or, you know, sisters or who, you know, family members who, uh, try to find a reason for their lives, right? So, know, I went through a whole, I go through this nauseam in the book, right? Trying to figure out, you know, what do we do and, you know, should I get involved in, various kinds of. programs and, uh, you know, self care, you know, you name it. I did, I tried absolutely everything, and I even went to a psychic, That's not unusual. I think most parents do that because you're just looking for guidance for answers, and you don't have very many. Yeah. I know my, my husband was a little bit aghast, right? He says, you're a social scientist, you believe in that? And I said, don't, don't, don't take it too literally. I said, my view is, is that if you go there and it's helpful, Right, all that matters, right. And I found it helpful, and the psychic told me that I was gonna write a book. So what did I do? You, you fulfilled the psychic's prophecy, right? For them? Yes. You wrote the book and, and really, I, I wanted to know, um. people to know that you can survive this worst. Um, and so I, that's how I ended up with a book I was writing for good writing to, it's became therapy writing Yeah. I feel that way about writing my blog. Like it's, it was very therapeutic and I wanted other parents to know they weren't alone. exactly. a, there are a lot of universal experiences and feelings that you have after the loss of a child, especially in a stigmatized way. People who are going through it need to know that there are people like us who have gone through it. And, and I've written an entire book about here's how you recognize the symptoms and so forth and so on. But here's how you go through a strategy to, you know, get beyond it. You never, of course, get totally beyond it, it's the people who really need it. And since I moved to DC I live in DC now, um. My husband and I moved here in 2022 after both of us retired, and I've come across people I, you know, have given talks. Uh, and so, but some people have come to me and, uh, you know, like they read my book and they, they say, my God, this is so helpful. And I, I just want more people to see that. Not just people who need it because they went through it or are going through it, but also people who think it can't happen to them because I'm sure you've found people who think it can't happen to them. Sure. Yes. So many people. Yeah. it happened to me. It can happen to you. Right, right. Was that Yes. Yes. Thank and thank you for writing the book and really appreciate it. And thank you for coming on the podcast and for sharing Alex's story with all of our listeners. And I just think that you, you have a very powerful message and I hope that you keep doing this advocacy work. Thank you for taking the time to learn more about this important topic impacting millions of Americans. Every week we release a new episode of Grieving Out Loud, but you can check out hundreds of other episodes anytime on our website, Emily's Hope dot charity. You can find a link in the show notes on our website. We also have resources for those struggling with substance use disorder, along with the latest news and information surrounding addiction and the opioid epidemic. Remember, you're not alone. Help is available. Thank you again for listening. Until next time, wishing you faith, hope, and courage. This podcast is produced by Casey Weinberg, king and Kaylee Fitz.