Description of the video:
Bernice Pescosolido sits in a chair and speaks to the camera: “Good morning and thank you for being here. I'm Bernice Pescosolido and I'm faculty on the Bloomington campus here at Indiana University. And I'm happy to be talking to you about your family members and the people that you loved. I'm sorry for the circumstance that we're here, but I want you to know how important it is that you're sharing your stories with us. So, one of the ways we'd like to get started is just by knowing a little bit about those people that you loved in terms of the kinds of people that they were, why you love them and how you feel about the loss."
Kirsten Calhoun sits in a chair and speaks to the camera: “Sure. So, my son is Brandon and he was 23 when he passed. Wonderful young man, very active, very social, smiled at everybody no matter what he was dealing with and life, enjoyed baseball coaching, has little brothers and baseball, dirt bike riding, jet skiing, was in the marching band and just love being around people and making people laugh and loved putting smiles on people's faces.”
Jennifer Burton sits on a couch and talks to the camera: “My name is Jennifer Burton"
Chris Burton sits on a couch and talks to a camera: “And I'm Chris Burton.”
Jennifer Burton speaks to the camera: “And our son, Zack, was 27 years old when he passed away of an overdose on September the second 2017.”
Chris Burton speaks to the camera: “We have three sons. Zach was our middle side. Like Jenny said, he was 27 when this happened, but of course when you're describing your son, it sounds a lot like our Zach, quite frankly, you know, just a great young man, had so many friends and he always wanted to help people and active and, and you know, he played football, Ball State champion, a two-time football state champion, really good athlete. Snowboarding, wake boarding, anything outside. Zach loved to do. And just he had so many friends and so it's just and we're just we're really close family, like I'm sure everybody else is here. And so, Zac is special to say the least.”
Bernice Pescosolido speaks to the camera: “One of the reasons why it's so hard to comprehend these losses, because the people that we hear about are just so wonderful and just such a good part of their family and it's very hard to understand why this happens. So, Jill, can you tell us a little bit about your brother?"
Jill Justus sits on the couch and speaks to the camera: “My brother was Guy, he was a gentle giant, big 6’2, 6’3. Big old red head, with this incredible arm span. Our family is very short family and the fact that he was so large was hilarious, but he was a very quiet person. He would be very quiet until he got to know you. He was very reserved, but once he did, he would talk your ear off. He had a very funny, somewhat occasionally inappropriate sense of humor. But if you knew him, it was you, you would be on the floor laughing. He was fiercely loyal over the people in his circle. Just a really good kid. You know.”
Bernice speaks to the camera: “It's part of the mystery, part of the mystery of this and try to be face the challenge. It has not been one type of person, right? They all turn out to be people that you loved and people that were contributing to society, that they were very different. I love your image of the gentle giant. Yeah, so does it is not just our brothers and sons, but also our parents. So Kente can you tell us about your mom?”
Kente Bell sits on a chair and speaks to the camera: “Yeah, my mother's name is Eileen. She's a mother of six and she was a very kind, warm hearted person. She made everyone feel comfortable. She was the person who didn’t necessarily made everyone laugh. But she was the one always laughing. No very loud, very boisterous. But always made everyone feel at home and ask, my mom was terrific."
Bernice speaks: “And last but not least, we have Matt and can you tell us about your Jasmine?”
Matt Heskett sits on a chair and speaks to the camera: “Yes. So, my girlfriend, her name is Jasmine and she was a beautiful person. When you see photos and you see here, but I always say if you knew her, she was even more of a beautiful person just on the inside. And I think that's why I fell for her. She just had like a bright smile that lit up a room. Her laugh I hear in my head all the time. And she was very much for her family and friends. She would do anything for those people and just her pure kindness for others. She was just a very, very sweet person and she told me a lot about now the correct or right way to treat people.”
Bernice speaks to the camera: “One of the things that really helps us as scientists in trying to face this challenge is really hearing your stories. And one of the things that I think would be really useful for us to know would be about did you notice something was wrong? When did you notice something was wrong? You know, what were the kind of signs or were there signs that, you know, made you start to have concern?”
Kirsten speaks to the camera: “I think for me, Brandon, he was not living at home any longer. He was 20 when I found out. And so, I didn't really see a lot of signs. But when he would come over for dinner, there were a couple things that I noticed. He would fall asleep and like out cold hard, like just in the middle of the living room. And to me that didn't raise any red flags because I had no idea what I should have been looking for. I just thought, well, you know, he's worked a twelve-hour shift today. You just must be really tired. And so, I didn't know anything. I had no clue until he actually came to me and told me that he was struggling with addiction and what he had been going through. I just was completely dumbfounded and just you go through that. How is this happening to my family? How is this happening to my child because it's not anything that you as a parent ever think that you will be dealing with or going through? I mean, this is the little boy that you saw flourish through life and you know, for them to come to tell you that is just it's heartbreaking. And for them to tell you that mom, this is literally the devil and to see that despair in their face and in their eyes when they come to you was really, really hard.”
Bernice speaks to the camera: “So what about Zac?”
Jennifer speaks to the camera: “Well, Zach was a sophomore in college and like so many others, you know, in high school he, you know, drank some and, you know, like the typical high school kids do. And so, he was doing really well in school. He had to work hard for its grades and he had a B average. So that was great. We didn't really see any signs just because he was not living at home. We have a really open family and we talk a lot. A lot of people think it's funny because most boys tend to be closed mouth and don't talk so much. But our boys, they told me a lot and often times more than I even want to know. Zac called us and told us that he was having a problem, that he had taken oxycontin and that it really grabbed a hold of him. And he said that when he took the pill that he felt more euphoria than he had felt ever in this life. So that's where it all started. And then that's when our journey”
Bernice speaks to the camera: “Trying to figure out what to do for someone who was so industrial and has had to work for his gains. You can see why that feeling was something that was a relief for him in many ways. Because I think this, you know, the images that I think the public has in their head of who people are who die overdose usually doesn't match the reality and certainly not the stories that we're telling.”
Jill speaks to the camera: “You know, addiction is no stranger in our family. Unfortunately, my father is also the sibling of someone who had passed away from addiction. My aunt passed away a month after Guy passed. And we were I was 17, he was 15 and he had gotten a staph infection actually on a vacation. And when we caught that, took him to the hospital where he was introduced to morphine to help with the severe pain he was going through. And I don't know if I’m explaining this correctly, in our family, you know, if access to that's left unchecked, it can cause a problem. Guy got a taste of that and it just he also dealt with mental health issues that I think that he used that to help alleviate what was going on with him mentally. And so, there wasn't any, I want to say, like necessarily sign right away. We just we saw that we recognize when he got that, that it was something had changed.”
Bernice speaks to the camera” And you were all vigilant as well.”
Jill speaks to the camera: “Uh-huh. That did not that didn't help and it was something that I think that he had used to try to help with what was going on with him mental health wise for the duration of his life.”
Bernice speaks to the camera: “We see that in mean really quite a bit. We call that co-morbidity. And the idea that you use substances to deal with mental health issues. Because men are notorious about not wanting to appear weak or to go to a physician in general, or go to a psychiatrist.”
Jill speaks to the camera: “As an adult, we, you know, he would relapse or fall back into it because we would notice he's not taking his mental health medication and it maybe his hygiene or home would start to deteriorate a bit more and when he was doing well, his home was clean, he would show up to work. He would be more alert, on time, you know, just more present. And when he wasn't that was normally a sign that he had started using again. That was how we noticed. He ended up using heroin and he passed away from, autopsy report said of fentanyl overdose. But I know I had started with morphine and I from my understanding, we're trying to get his hands-on other prescription medications and then left the house, went to college briefly and got his hands-on heroin and it just devolved from there.”
Bernice speaks to the camera: “One of the things that's really interesting about this epidemic, the losses that we're seeing is that the stigma is very different than it is with mental health problems or alcohol abuse. And it has very low, what we call onset stigma. Which is there is very little blame that the public puts on people who become addicted. Because unlike other situations, they see this very much as resulting from the kind of story that you're talking about. So, a legitimate prescription that bad for certain people who are vulnerable for whatever reasons, whether their genetic, biological, social, psychological, then become addicted and you can't really predict who that's going to be. So, the onset stigma is actually very low compared to mental illness and compared to alcohol use. But the offset stigma, which is the rejection, the isolation, the discrimination, the prejudice, just as high as it is for all those other problems. So, we'll talk about that a little later on. But really want to finish hearing a little bit about more the pathways that you all saw. Kente, so tell us a little bit about halfway to you experienced and saw what you were growing up?”
Kente speaks to the camera: “My mom, she did a very good job of hiding her addiction for me because I was a child. So, my mother and my father were heroin users when I was when I was growing up. So, before I was born, my father started using. You went over to Vietnam. He was seen as crazy stuff out at trauma. So, he zoned out purposely by using caraway. When he came back and came back with an addiction, he met this wonderful woman who was my mother and slowly introduce her to it. So, growing up, I would see things but I didn't know what was going on. At the age of 13, I was removed from the home, I was taken away from my parents, we got evicted and I lived with my brother, from 13 to 21 years old. So, during that time, I didn't I didn't see my mom or my dad much. And when I did, it was always, it was around money. Hello, son, how are you doing? Sorry I haven’t been keeping up with you, do you have some money I can borrow? And I'm a teenager. So, when I graduated from college, came back home, that's when I start seeing the signs. So, my mom, she was one of those people would she would get hot very easily. Right? So, if this is in the summertime, she would walk around with long sleeves on, this is weird right? You're very just naturally hot person. She would always have on jeans. So, one night, I remember seeing track marks in her legs and I asked, I said mom those look like track marks and she covered her legs up and she began to scold me, don't you disrespect me those aren't drug marks now, I'll let her know that. I know that you're on drugs, you know, dads in the penitentiary right now because of drugs, selling. I'll help you get off if you if you're honest with me but she refused and I don't know if that part of it obviously is stigma, the shame, the guilt and all that. And being a parent, not wanting to show your child like you’re this low. So that was the first actual signed that I knew that my mom was using.”
Matt speaks to the camera: “So, my story of Jasmine's a little difference in that I myself am in recovery and I'll have four-and-a-half years sober next month. And I met her kind of through that process. She had gotten sober and in recovery and that's when I met her. So that time we had together I got to see her grow and just become even more of a light. It was work and again, we had our own place and for me from my experience with it, I thought things were going good. I know there's been a lot of times where I've thought back on, you know, could I have done something differently; where their signs? So, it happened two days after Valentine's Day. And we spent Valentine's Day together, had a dinner and everything like that. And it was just that one time. I randomly stopped by her place because I, we had planned to meet later and she wasn't answering her phone and I had the keys and so I just had a weird feeling. And I ended up going by her place and I found her. And so, in her case, I think it was just that one time. She went back to it and that that's all it took. When she was in the hospital. They let us know they was fentanyl. She went back and used heroin and they said it was laced with fentanyl. And just for the time spent I had spent with her. Now, months you've been leading up to that, you know, she seemed happy. But again, just being a person in recovery myself. Sometimes I wonder what was really going through her head because I know how that can be, where I could put on a smile and act like things are going good and really maybe they're not internally. So, that's the part of this that is really tough too. It's just sometimes wondering what, what was really going on at the time.”
Bernice speaks to the camera: “Congratulations on your sobriety. What kinds of supports do you rely on? Do you depend on, did you find during your own journey?”
Matt speaks to the camera: “Like before or after that situation? Because me getting into recovery was not an easy road either. I graduated from IU down here in Bloomington. I took stuff to the extremes and I probably abused multiple substances, but I never thought I was to the point where it was a problem. And then I had an injury while I was a student here and was prescribed pain medication, which rightfully so I needed at least to sleep at first. I smashed my hand really bad and they probably gave me a lot more than I needed. And for me that was when it, when it started. I never had a taste of that before. I was never I didn't really like pain medication. Usually, made me nauseous and things like that. And it was like a light switch flipped. It was different that time and I had friends do interventions on me. My parents extremely supportive and eventually I came clean and to my parents because I ,I just didn't know what else to do and even then, it was still a struggle. So, the biggest support for me when I got into recovery was getting in the recovery community, being around other people who've gone through it themselves, people who understood it . My parents and family and friends are completely 100 per percent supportive of what I do. But there are still times I don't think they quite understand it. And that's why it's important for me to surround myself with people that do.”
Bernice speaks to the camera: “I think it is very hard for us to understand it. I think it's very hard to find support. Because I do the work that I do, even though I'm a scientist. I probably get one call a week from a parent or a friend of a parent asking me, you know, where can their child go whose down here? And I'm at a loss myself. So, I'm very interested in knowing the supports that you did find and the challenges that you faced. Because it sounds like there were there were struggles all the way along."
Matt speaks to the camera: “In terms of support for me and my recovery, 12-step recovery meetings and things like that. And I attend workshops and I have a core group of people in my circle. But then when everything happened with Jasmine, just from suggestions from other people who have been through similar situations. There's actually a co-worker of mine recommended a grief and trauma therapist and I'm so glad I did that. It took me a couple months before I finally jumped on board with that, but I knew I had to do something and thankfully, I was already in recovery and had a lot of support around me because if something like this would happen before all that, it would've bad. And I wasn't exactly sure how to deal with it or what to do. So, I again, when people suggested stuff just kind of how I did my personal recovery, I tried to follow through with that and I ended up seeing a therapist for probably about a year and a half. And it was a process. So, it was not easy, but it was a truly helpful.”
Bernice speaks to the camera: “There are no quick fixes I think we know that. So, what kinds of supports did you have? Where you challenged in finding things?”
Kirsten speaks to the camera: “For me? It was a challenge. This was six years ago when my son Brandon, came to me with the addiction. And there, of course for me, there was a lot of stigma. I mean, I was probably kind of in that same boat, you know, because six years ago I never, you didn't, at least for me and my family, I didn't hear a lot about heroin and addiction. And so, I was kind of in that category until it touched my own family and my own child. Thinking like, oh wow, that's not going to happen to us or, you know, it just it wasn't a thought even in my mind because I really, I didn't know anybody. I hadn't heard much about it. I just so it was a challenge for me and I was trying to tread ,felt like I was trying to tread water. I didn't tell my family. So, I didn't really have a lot of support because I was kind of, I was in shock and I was scared and I didn't know what to do. And I was afraid that people were going to judge him. So, I kind of kept it a little isolated, I guess, and just try to do what I could to try and help and find resources. I mean, we finally did land him in an outpatient treatment. And this was shocking for me. Is they said he's not severe and his addiction is not severe enough to be admitted into an in-patient unit and I just about lost it because I thought somebody needs to protect him. I don't have that ability. I don't have that capability. I don't know what to do for this. This is what you specialize in. You need to help my child. And for them to say, well, you know, we feel like he’s best-fit in an outpatient recovery program. And I just was like, I just felt like, okay, well, this is the only choice we have, so we're going to have to do it. And even still now I think for a lot of people, there aren't enough resources out there at all and the right resources, because this isn't just any addiction. I feel like heroin, when you have an opioid or heroin, whether it's pain medication or straight heroin, it that's not something that you're going to be able to just stop. And do you know? I just feel like the programs are failing our people, our loved ones. I'm gonna kind a backup to the night before my children had been with her father for the weekend and spend some time with him. I had moved my son back home once he came to me to tell me that he was suffering from addiction. So, I said, well, you need to come home so that I can help you. So, he was living with me at the time and he got home Sunday evening. And I could tell that something he didn't seem quite right. Like there was something like I felt like I think I think he's using again. I remember before I went to bed that night and we were in the kitchen and he said, mom, did you miss me? And the last thing I said to him was, I always missed by children their gone and I kissed him good night. But the next morning, I got up to go downstairs to make sure that he was up and getting ready to go to treatment. And I saw that the basement light was on, the door was open. And I thought, oh, wow, he's already up. This is great. So, I went downstairs and I heard the TV. And I was like, oh Brandon are you awake? And by the time I got to the bottom of the stairs and looked to my left in the bathroom, he was lying on the floor and he was so cold. And I knew that there was nothing I could do. It was too late.”
Bernice speaks to the camera: “He was in treatment at the time, you are a medical professional. You clearly loved him and took care of him. And sometimes those things halfway. Does anybody else want to talk about that day, bring us back to that day? I think that really helps people understand this.”
Chris speaks to the camera: “One thing I want to say and then Jenny can talk about that day, but I just, you know, as far as the, you know, the path to care like we were talking previously as this difficult, you know, finding the right place. Okay. So, we told you about Zac's story. He never had any issues in high school. I mean, this was he was never nothing like this ever happens first year at Ball State. He had a B average and then it's sophomore years. His friend he played football with in high schools’ father had back surgery, brought oxycontin back, back to school. So, him and five other friends, you know their college kids , they made a bad choice and tried it. And so, what we've come to find out, we know a lot more about addiction than we ever thought we would know. If you have an addictive gene, it's a whole different ballgame, okay, and so I wanted to make that, that's very important, I think. And our story with Zac because he just never had any issues. And so, he, he became, he has an addictive gene and his friend who brought the oxycontin to school has the same addictive gene. So, both of them became addicted. The other three could, as Jenny says, sometimes can dabble in it. It didn't it didn't affect them like it did Zac.”
Jill speaks to the camera: “Just real quickly touch on that gene issue that Chris brought up. Me and my brother were both introduced to prescription painkillers at similar ages, you know, for me wisdom teeth, something like that. Just a minor surgery where they would do to alleviate the pain. And something I always wondered was, you know, he was introduced to that 15, I was introduced to that at 15. We had relatives that had issues with substance use. What was so different for him and I that this was something he gravitated to after that and I just wasn't. My mom was very, very vigilant in the way that she would give us or medication after a couple days. And, you know, at the time I'm a teenager, my mom, and finally, you don't need to do this for me. It would be three days and we would watch her pour the rest out like, OK, this is it for you guys? And I just, you know, it was always I just never felt like it was, interesting because I can't say that I didn't like how I felt on painkillers, but I never was drawn to seeking them out afterwards. Where that wasn't the case for Guy. And that's not absolutely not a character or personality flaw, but that's just, that was the difference between how we, you know, we're young. And so, I just always wonder, why, why wasn't it me as well?”
Jennifer speaks to the camera: “After Zac came to us, we like Chris said, we he went to Tennessee for treatment for 30 days and I, I distinctly remember when we visiting there, they had like family day like this celebration, whatever. And I remember one of the counselors saying to us, we will probably be seeing you again. Most people come back to 2, 3, 8 times. And I remember just looking at Chris and kind of going, you know, we're done. Like I was so, we were so naive and just, you know, Zac is fixed. We're going to go back to our normal lives and that's the end of that, you know, let’s move on and that, you know, that was all through being because we weren't educated at all on, we knew nothing.”
Bernice speaks to the camera: “Well, I think that Chris is really here, is that really if there's a genetic component to this, there's also the social network of friends bringing this back. You know, it's a very complicated set of disorders that we're dealing with here. And so. But it coming in like they do to you and saying, you know, we have a simple solution. That should be the first red flag. And your son was smart enough to see that?”
Kirsten speaks to the camera: “I know one of the barriers that we ran across when he was in treatment, I knew he was suffering from some depression and I knew that that was a contributing factor to his substance use disorder. And I was so mad because nobody was advocating for my son. I was the only one that could be his voice and advocate. And here we are today where all of their voices and you need to get set up with a counselor, psychologists or psychiatrists so that we can try to get to some of that deep-rooted stuff going on because it is a complex issue. This isn't treating a sinus infection here to just take an antibiotic and everything goes away. And I was so frustrated because I went with him to his second appointment. I asked him, I said how did the first appointment go? He goes I was in for maybe ten or 15 minutes. Mom he gave me two prescriptions and sent me out the door. I said he did what? And so, I said, well, I'm going with you to the next one. So, I went with him to the next one. Same thing. Gave him a prescription, sent him out the door.”
Bernice speaks to the camera: “They this is why one of the things that we talk about a great deal in my line of work as a medical sociologist really is about the health care system. Because providers are not rewarded for spending time with patients now.”
Kirsten speaks to the camera: “Now this is your job. And as you are a psychologist, you're a psychiatrist, your job is to spend that hour trying to get to know this patient and what led them up to this? He looked at my son and said, well, why can't you stop? “
Kente speaks to the camera: “Well we expect those type of statements from family members, friends, community, right? But from a person that you're, this person is giving you guidance and medical Council on how to get through this addiction and they say that that's just, it’s scary.”
Chris speaks to the camera: “So Jen and I, we've actually because when you're making these decisions, define the right care for your loved one. You're doing it at a crisis point though, trying it's hard to find it. Okay. So, we've had meetings with Anthem. Okay. So, and we've tried to tell them so, you know, you need to have a path to care for people that they can get to because this is expensive. So, trying to find your treatments that’s affordable and what's in the network what’s out of the network. And so, we just don't know. So ,if you could have, you know, have a group of providers that you trust that they're going to help people. I mean, this deal about well we're going to approve for 30 days, that's almost like a joke. Somebody might need 30-days some I might need 180 days. It just depends on the individual like you had mentioned. So, we tried to tell them, you know, have like centers of excellence for this, the do it for autism. If you're an anthem member and you have a loved one with autism, you can, there's a group of providers you can go to and get care. I go, you need the same thing for this. This is affecting so many different aspects of people's lives. And if, you know, and it just if they could just get a trusted group of providers let them decide what the care is, if it's 30 days, 60 days, whatever. It would help us so much because we just don't know where to turn when this happened.”
Bernice speaks to the camera: “It’s not just what I am doing, but what people here at IU are doing in general. But I think that's what why this movement toward precision health and precision medicine is. It includes genetics. So that one of the things that hopefully we'll see you in the future is that they would have known this about both of your boys. That's part of it. But precision medicine, precision health is not just genetics, it is about these conditions and it is about the circumstances and their ability to get care. So that's incredible what you're doing and trying to get them to understand the complexity that people face here. Because for all of your stories, you know, the lost productivity, the lost love, the lost lives are just a tremendous toll that our society is paying for not having the kinds of services that we need. So really a thank you for doing the things that you're doing in your own advocacy work”
Jennifer speaks to the camera: “Zac previously had gone to a rehab facility where he was living in California. And it was great that time, you know, the care there was great. He liked the doctors there. He came out of there with a lot of useful tools. Then Zach had a tonsillectomy in June of 2017 at UCLA Medical Center and I was there for ten days and, you know, he had that pain medicine. He actually spent the night in the hospital. And so, the pain management team came to me, while Zac’s in surgery. And because Zac had been titrating off suboxone and he was due to finish the suboxone actually the week after his surgery. So, the pain management teams suggested strongly suggested that he extend the titration for 60 days and hopefully for 90 days. But the IOP doctor refused to hear the pain management team. suggestion from you selling medical hospital. So, he said his comment was that Chris and I and Zack had signed a contract stating that yes Zach will you know titrate off of the suboxone he will be done this week. And that's the end of it. And so, you know that led to him being dismissed from his sober living house where he had been thriving. it just started a downhill spiral from there and then he went back to the rehab facility that he was in that had been so good before. But this time it wasn't good they were over booked with clients they were understaffed. It was just a very, very different situation and Zach left there two days before his 30 days were up. We were trying to find a good sober living facility and so he was staying in a hotel. And we're having trouble finding a good place. And so, he said I think I just want to come home. He had a flight the next day out of um los Angeles to um Indianapolis that left at two and I was talking to him all morning and I was at the grocery and he was telling me what food he liked and what he you know what he wanted me to make him and we were just laughing he said mom I can't wait to get home. And um so I was getting ready to go through the car washing it so I said Zach I'll call you right back and so then I called him back but he never answered. And so, I was driving down the road and I remember feeling like I was so happy and then I all of a sudden, I was just like shaking out of control and I felt nauseous and really hot. And I remember having to pull over because I thought I gonna be sick. And then I got home and I said Chris I can't get a hold of Zach you know he should be leaving for the airport. And Chris said that he had tried to call him as well. So, then I tracked his phone and it said he was still at the hotel and I called the front desk and they said yeah he had asked for a late check out which made sense because of the time this plane was leaving. But now we're trying to clean this room and we you know unlock the door but the chain was on the door and we think he's asleep because we see him sitting at the desk. So they said they'd call us back and then I called the front desk again and they said well we're still trying to you know get into his room and they said that somebody was going to call us back and like 15 minutes later they called Chris's phone and it was a sheriff who told us that he was gone and that they found some paraphernalia. And what had happened was you know because he hadn't done anything for oh you know over 30 days that um you know then what happens a lot of times as they try to use what the amount that you know they have used. Prior to them prior to the 30 days and yeah and that's and so we what's just really hard is that you know he was Alone and he was so far away and that we can go to him because it was a holiday weekend and um you know they wouldn't let us into whatever he plays things. And it's just really hard because we just feel like guilty. I do because I feel like um you know those last couple of days I really let him down because I should have gone there to get him instead. Of normally we would I don't know why we didn't."
Bernice speaks to the camera: “I think all of us have been in situation where we feel like we could have done something differently. My husband passed suddenly and I look back at that so often about if I had pushed him more to go to the doctor or if I had done, you know, and what my physician said to me was he, you know, he was a grown man. And your son was a wonderful, emerging adult who had a moment of weakness and there is probably nothing you could have done. So, I understand the guilt of having been there myself, but I hope over time that that will that that you will realize that there probably wasn't anything you could do.”
Chris speaks to the camera: “You know, he was packed and coming home. I mean, we're just we're waiting, you know, that's what I mean. It's all terrible. He was happy and we couldn't wait for that homecoming and we just thought, you know, we're going to figure this out together in Indianapolis. And where are you going to go? And so, we, we, we, you always think about when you could have done. I mean, that's just that's just but we tried a lot. And I said Jenny taught they were like best friends. I was very close to Zach myself, but, you know, they ,they, they talked all the time and so maybe it was too difficult because we're just right there."
Jennifer speaks to the camera: “He was within an hour from getting on a plane. They said he was all packed and all dressed. And then I got this phone records and there was a call that came in right after I talked to him and I called the number later and said, you know, this is Zac Burton's mom and person just hung up, you know, so what we assume that it was like a drug dealer and a friend who said, you know, I'll, I'll just give this to you for free this time. It's on me, which is what, how they get them. Because they know sometimes, they don't have money.”
Jill speaks to the camera: “And from my understanding, his girlfriend came home and found him. And I, you know, it's cliche, but it's the phone call that you never want to get. I, it's, it's incredible what your brain does to help you in moments of panic and trauma. I remember it was very early in the morning. I couldn't tell you know what day or time that was because everything just shut off from there. But I got a call from my mom really early and all she said was. I'm so sorry guys gone. And I couldn’t hear her the first time it was like I, you know, my brains waking up. I'm like, what did you just say? And she said it again and she's crying and, you know, you don’t want to hear your mom cry. And I just it was like white noise from there. And I woke my husband up and I'm like, the only thing I could think of is we have to get to my mom and dad's house right now. Like, I don't remember the drive there. All I remember was getting there, being with my mom and dad and I was in shock. But at the same time as their daughter, I'm sitting thinking to myself, I need to be there with them, for them. So, aside from a couple of very isolated events that happen between finding out and leading up to his funeral week, everything just turned off. I just remember not answering anyone's phone calls because I just didn't have the emotional energy to pick up the phone, but I don't remember anything from midway from getting to his place or to my mom and dad's place to his funeral. Everything is just blank slate.”
Bernice speaks to the camera: “It’s amazing how our body protects us.”
Jill speaks to the camera: “I've had to go back and I don't I didn't know for a really long-time what day he actually passed away. I, I just couldn’t, I didn’t, I had no clue. My mind just couldn’t handle it. I've had to go back and look at his obituary or when my mom would say that was the day just because I completely shut off.”
Bernice speaks to the camera: “Thank you for telling us this story because I think that's really important for those of us who aren't there with them when that happens. Would you like to take us back to the day you found out about your mom?”
Kente speaks to the camera: “Yeah and I’ll piggyback a little further. So ,after graduating from college, I went back home and at the time my father, he was in the penitentiary. And, you know, so we start trying to give my mom that and help that she needed. So, methadone clinics, things of that nature, and it just didn't work. So, when he got out of jail, he got involved and it was methadone, back and forth, back and forth for years and nothing helped her, her disorder. And then after eight years of just that not working, she got into a 14-day clinic right. So, after doing that several times, something clicked. So, she went to Salvation Army and she was in a good place. She hadn’t used for three months, six months, a year, right? And so, she was in this place where she was doing really well. And then I remember going to see her every now and again and while she's speaking with me, she would nod off on me. Like I hope she's not right going back to using again. So, I kind of had an idea of it starting again. So, I remember I was I was about to take a shower or about to go to work. And I get a call from my dad and I don’t get a lot of calls from my dad. So whenever, because it's either he wants something, needs something, something of that nature. So, I answer the phone and he says, son, you might want to sit down for this. Okay. So immediately I said to myself, Okay, moms, she's overdose again. That’s what I said in my head. This has happened before. This is how the conversation starts. I said, Okay, what was going on dad? Your mom is gone. They found her. Then that’s when it changed. Right? So, for this span of time in my childhood when I didn't have my parents in my life I always wondered, would I care when my parents died because I'm not really close to them, I don't have a strong bond with them. Would I care when they died? And that let me know that you do care when they die. It's a different, it's a different. You don't realize that that’s your mom and she's gone, you know. So that was my story.”
Matt speaks to the camera: “Thursday, February 16th. And I remember I’d gotten off work. I went to Jasmine's apartment. We cooked dinner; I ate dinner. We were just hanging out and having good conversation and I left her apartment to go to one of my recovery meetings that I attend. We kind of did our own meetings to try and keep that part separate. So, I went to my meeting and the plan was after my meeting, she was going to meet me or be at my apartment, I had a key to her place and she had a key to mine. The church I was out for my meeting was probably a mile, mile and a half from her apartment. And towards the end of the meeting, I had sent her a text message to see if she was at my place yet or if she had left and I never got a response. I didn't really think anything of it. And then when the meeting was over, I was talking to a couple people, I finally got in my car to leave and I was heading to my place. But I had called her twice and no answers, still didn't have a response from her and I just started to get a bad feeling. And so, I was driving pass her apartment complex. So, I figure I would just I'll just stop by and I saw her car was still there. And when I got to her apartment, I used my key and unlocked it when I went to open it, she had the chain on the door which she had never known that once since we had been together. And it was almost like I knew. All the lights are still on, I couldn't hear anything but the lights were on, I could see in her apartment. I call her name, no response and so I just kick the door down. And when I went back in her bedroom, I found her she was face down. And it similar to you, it like their moments of that night that are so vivid. I think the like that image on there, I think it's permanently stuck in my head. But then part of it I don't really remember exactly. But her and I both being in recovery we both had Narcan at her place and at my place just in case. And so, my first thought, I grabbed the Narcan and call 9-1-1, administered CPR until the medics got there. And then as soon as they arrived, I had to call her family. I knew it was bad when I found her, just from the way she looked. And when she was in the ICU, she went to the hospital at one point they made it seem like there was a chance, they that they had a pulse or something like that. And we were sitting in the ICU or in the ER and before they moved her and one of the, the doctors came and essentially said they there was fentanyl in her system with however much was in her system, I would have needed like five or six times the amount of Narcan that had. But then also they don't know the exact amount of there’s like a 30-minute window there where we don’t know. But yeah, just shock. Not wanting to believe it's for real. You know talk about receiving the phone call you never want to receive, I had to make that phone call. That was hard hard.”
Bernice speaks to the camera: “And so one of the things that we've mentioned a couple of times, but I'd like to go back to is in the wake of this and looking back and even now on how other people respond to your situation, you know, what would you tell people? Like what, what did you need to hear from people or what did you hear from people that you did not need to hear from people in terms of their lack of understanding or they're unintentional stigmatizing of the situation that you faced.”
Kente speaks to the camera: “I have family members like my grandmother who were extremely disrespectful, no empathy. You know, your mother, your father. That's what she would do as a kid, you know, like, like that's what they talking about IV drug use. And so, the one thing I would want people to understand is that this is a chronic brain disease. This is not a matter of willpower, is not a matter of how weak you are or how strong you are. Your brain, which is the most powerful part of your body, becomes overtaken by these powerful drugs and your brain is so powerful and it wants this, this dopamine so bad that it takes over your body. And if people understood that, that's what addiction is. The stigma and the, the finger pointing and the, the inferiority labels so much of that would end. And I think once we get a better understanding of what it does to the brain. It would will really help people. Just as a family member I needed that. My family members needed that. And now as an educator I try to let children know who had parents like mine, like your parents love you more than anything in the world is right now their brain is just hijacked for a minute.”
Bernice speaks: “Yeah. They're incapable of getting pass the thing that's grabbed them.”
Kente speaks: “It’s not them. They’re still the great and wonderful personally they are, it’s just is right now, their brains a little stronger than their heart.”
Kirsten speaks: “I think unfortunately for some people until it affects them personally, their opinion and their attitude in what they believe about substance use disorder. They're going to that, that's not going to change for them. I still, you know, a lot of us, we live in a technology world and a world of social media. And I have still seen people. There's somebody that I went to high school with who knows I lost my son and knows how I lost my son and will still make posts on Facebook. Very judgmental. Oh, go ahead and die dummy. And when I see that, I it makes me so angry. You know. It's like I just want to shake that person and say, you know, I'm so happy for you that your children are thriving right now and that they're doing well. And I pray that you never experience a moment that I experience on a day of what it's like to not have your child? And for you to say that and to behave so much ignorance, is so infuriating for me.”
Bernice speaks to the camera: “But I understand many of you are engaged in actually fighting the good fight on this and have started efforts to, or engaged in efforts to help the public understand. Could you tell us a little bit about that?”
Chris speaks: “I mean, we so when this happened to Zac to lot of credit, I think I had faith, just I we wanted to do something first and foremost to honor him and to help others. So, Jenny and I started the Zac 43 Foundation. And the number was 43. So, we see 43 everywhere. We do a lot of God winks signs from Zac all the time. So that's what keeps me going because I know he's with me every single day and so were the foundation goes. It's kind of up to Zac and God, and we'll see where that goes. But I want to do that again to honor him and help others. And so, it's really it is Jenny's she's been doing so much with it as far as our Website and the hours and time and love she has spent on it. It's just been tremendous.”
Bernice speaks: “One of the things that stigma does is that it keeps, it silences people”
Kirsten speaks: “Well, and people, you know, we're all here because we have a commonality and we're all part of this human condition, right? And I can tell you at Brandon's funeral, I cannot tell you how many people came up to me and said, I'm so sorry for your son’s passing or, you know, my fondest memory with Brandon is this or and by the way, my cousin, my uncle, my brother had a coworker whose niece was, who had passed from an overdose. So, you know, its people talking and being open to helping one another. We're all here to make a difference and to fill a purpose and to help others. And the more we talk about it, the more you realize, you know, there's a lot of people out there and they don't have people to talk to. But then when they find out that you've been touched by it, then they can kind of relax a little bit and say, oh my gosh, can I share my story?”
Bernice speaks: “Do you see things changing in a way that's positive and do you think this generation coming up is more open-minded? Is it, people our age? Well, not people your age but my age who are harder to convince or to see the humanity in what's happening? Where is this younger generation are more open?
“I know when Guy passed a couple of people asked me, you know, older than me had asked, are you going to tell people what happened and I’m like, of course, we are going to tell people what happened whey wouldn’t we? This is not going to help anybody if we don't talk about it. And I know when I was a kid and we are dealing with, you know, Guy’s mental health issues kind of arising younger. It was something you just, you know, late nineties, early 2 thousand you didn't talk about it. And, you know, I feel like I started to see that start to change early 2000s when I was going to college. And like people started talking about it more like my classmates, my friends and I have no problem now going to, you know, any of my good friends or people. I mean, we talk about, you know. well, at my therapist appointment like in talking about therapy and getting seeking mental health and mental health help and, you know, being on medication for a mental health is I feel like it the walls are coming down and people are being able to speak about it more, much more freely than when I was a teenager. In my late twenties now it's two so much were discussed.”
Matt speaks to the camera: “I believe the more people talk about it, the more that will impact change, And I've found similar to what was already shared that the more I have talked about it, the more somebody else seems to open up and share that they'd been impacted by it and some, some way or another whether family member, friend, coworker or something like that. And there still is that, that stigma piece attached to it though, if I'm having a conversation or it comes out where I'm talking to somebody and I mentioned that my girlfriend passed away and then I say, this is the reason why, you know, it's kind of a, some people, they don't know how to react to what, what to think of that. To me, it should be no different than if she passed away in a car accident. The reason or how it happened didn’t change anything about her or who she was.”
Bernice speaks: “So, I think there are many people out there who are good-hearted, who would like to say something to you when you say that? I think that they're, they're so afraid to say the wrong thing. How would you like to see people respond when you tell them, you know, my girlfriend passed away from a drug overdose?”
Matt speaks: “It’s tough because unfortunately just being in recovery myself I've had to attend a handful of funerals and I know a lot of people that have lost this battle. And sometimes it, I don't know what the right thing to say is either. And sometimes they can simply just, I don't know how it feels. I'm sorry, but I'm here for you if you need anything. But to me, it almost hurts more when people trying to avoid. It.”
Bernice speaks: “And that's important for people to hear. That really it's better to even say something maybe a little stupid then to just kind of be dumbfounded.”
Matt speaks: “It was touched on earlier. I can't remember what exactly somebody share, but when, you know, kind of similar to when somebody told you I don't get it like why don't you just stop? I've had people tell me before. It was just a couple of weeks goes a third-year anniversary of her death and I've had people tell me before you need to move on. And not a day goes by I don't think about her and for me, me and her family we've said it before, we move forward, we don't move on because that, you know, I mean, like that's not something you can just move on from and act like it didn't happen. It happened.”
Bernice speaks: “That is such a great line. We move forward, right? We are not stuck. But you're not going to forget. Yeah, I think that's really important. I heard somebody say not too long ago that, you know, you don't really die until everyone that you're in their memory has passed on. So as long as we hold them in our memory, they're still there and they still matter.”
Kente speaks: “For me the best thing that people would do was they wouldn't say anything. They would just give me a look, pat on the shoulder. And people that were more intimate with me, they will sit down next to me and not say anything. And that was what therapeutic than I'm sorry for your loss and do you want to talk about it?”
Kirsten speaks: “When people say I'm sorry for your loss. I mean, that's a kind of a blanket sympathy statement. Right? That's kinda what we were taught to say to someone who was dealing with grief is I'm sorry for your loss because yes, we've lost them physically, but we haven't lost their spirit, their memories, everything that the love that they've given us that love is still there. So, I don't know, I don't, I don't know what the I don't know that there is a correct way to say I know for me I get really tired of hearing. You're so strong. I, I don't see how you do it. You still have this wonderful smile and I just want to strangle them and say, you know, I appreciate what you're saying. But you know, I sometimes I'm, I'm really tired of being strong. I, I'm exhausted. This grief journey as exhausting. And sometimes I don't want to be strong. Well sometimes I want somebody just to carry me.”
Jennifer speaks: “On the topic of grief. It's from a parent's perspective it's, it's really confusing because, you know, your mourning, if you have more than one child, then you're mourning the loss of your child. But you have, like in our situation, we have two other sons that are alive. So, it's, it's a hard path to navigate. You know, do you know I've had people say to me, well, you still have Nick and Christopher. I'm like, what's your point? Like, I'm going to forget about them or I can't be sad about Zac because I need to be happy for them. You know, that's just not the way it works. So, you have to just learn how to put on a happy face sometimes when you don't feel like it or you know, get up and move. And literally there's some days and days where you just don't even want to get out of bed. But your other kids give you the strength to, you know, you have to move forward. You know, you don't have any other choice and, you know, it is like you said, it isn't moving on. I think people don't know what to say. And, you know, it is like just give me a hug or just I have friends send me my sign for Zach is a blue heart. They'll send me a blue heart, you know, on text messaging or, you know, thinking about you today, just knowing that someone is thinking about you, knowing that sat like Zack's friends have called me, I had a dream about Zack last night and I want to share that with you. Like those are the kind of things that keep you going because I think one of the scariest things is thinking that they're going to be forgotten. And like, you know, like bringing pictures today, you know, it's like I already use this picture before and then you realize like, I don't have any more pictures, like handing more to take and these are all the pictures wherever can have.”
Kirsten speaks: “It goes to those blankets like I'm sorry for your loss or put out their time heal with time it heals. No. No. It's not better after the first year. It's not better after the second ear, it's not better after no. It's like five years, ten years. But yes, we're, we're still grieving. We still miss them and we still love them and are still speaking, speaking for them.”
Chris speaks: “And I think the moving forward is the Jenny and I hear the moving on that that's just not a good thing to say because it had for me personally, I move forward is Zac is just such a big part of my life still. It's different. It’s spiritual and he's, but he's with me and I've mentioned before about the signs that gives me and we still have three sons, ones in Heaven. You know, and so I move ahead in keeping honoring him and knowing he is still with me in just a different way. And so, I feel that closeness with them every single day. And I know that's going to continue to really, that kinda grows stronger every day. And God's promise my faith is there's heaven and I'm going to see him again. Okay. And that's, that's his promise to me. So, I know that doesn't make it easier here. But no, when he's with me every day and helped me in so many ways. I thank him. I know he's given me signs and helped me do things and help and Jenny and our other two boys and it's just that's, that's so important. I think for people that when you lose something as precious as our loved one like that, it's just, you know, they're always still with us. It's not going to go away; it's going to get stronger. And it is for me. So, until I see him again.”
Bernice speaks: “So many of you talked about the loss, being partially the result of the absence of good treatment or even knowing where to go and not having the resources in the substance use treatment sector. How do you think we could change that? What can we do to not have families go through what you're going through.”
Matt speaks: “Well, I just believed from my experience and my time in recovery and just networking and now actually knowing a lot of the pathways to recovery. No, I know I have a lot of friends I've got sober and recovery through a lot of different places and I've heard a lot of good things about a handful of them. So, for me, that's when people ask me, I have this person where could I go, do you know where's an open bed. I usually know of a couple of places because I I've heard people say really good things about that. I can't just trust what I read online. I have to go off when I know, but at the same time, I got sober through one specific place, but also the other couple of other places I went before that are all good places as well. So, I can't say it was that plays the reason why it didn't work for me because I know people that they work for them there. I just think at that point in my life, I, I think I was still struggling to realize what it is I was dealing with was what was really going on and really trying to accept a situation for what it was. I thought I might be able to figure it out.”
Bernice speaks: “Well, that's very American. And that's how we think that we have this notion that we can figure it out, we can do it. We're not a culture that likes to ask for help, but I really like your idea. We get the best information from others with experience. Again, why things like foundations and support groups are so important. To speak a little bit more about your notion of like regulation. How, how would you do that?”
Kirsten speaks: “I don't know how we do that. I mean, you just and hearing Chris talk and just, you know, about when you act, you’re in a moment of crisis and you're trying to do everything you possibly can to save your loved one. And so, your kind of just like at a loss and you're trying to find where can I get my child in or loved one, whoever that relative is, one we know there's not enough treatment facilities out there. So that's, that's a problem. Two, we know that they're very poor treatment facilities out there that, you know, are out there to take advantage of you and your family when you're trying to save their life and they don't care, they just want the money in your wallet. So, I think it's important for families to reach out to organizations that are non for profit, like the addiction coalitions and the overdose lifelines and all of those people that are out there that are non for profit because they have the goal in mind and their heart and to do everything they can to help educate, pre-vet, and save. And so, they're going to be able to, I think, help give you some guidance versus, you know, yes. We, we looked at the internet, we're Google and we get a list and we just start calling, you know, but are we calling the right one? But yes, there needs to be some regulation put in place to separate the good treatment facilities from the bad ones and the ones that are out there. Not necessarily to help you, but, you know, like we have to keep monitoring things. I'm not sure.”
Chris speaks: “We do some work with them and they really and the grade providers all the time they give them quality scores. So, they had, like Jenny said, they have the data, so they need to use it and get that group providers that somebody can go to. That's great data for everybody. I know and I know they're committed to doing that, but they've got at a ways to go.”
Matt speaks: “It will most likely get approved for the detox because it can be life threatening the withdrawals and stuff from that. But when it's opiates or heroin, you might feel like crap, but that's not life threatening. So, it's almost like a guaranteed no. If you come in and I know from personal experience, detox and withdrawals from opiates and heroin is not fun. But when they say it's not life-threatening, that's a bunch of BS in my opinion because it is life threatening. So, when somebody is in that state of mind and that is a thought process, I don't want to be thinking what does feel that there are going to go back out and they're going to go do something.”
Kirsten speaks: “Look at the opiate debts versus an alcohol death. Those numbers are a lot higher. We're losing. I can't remember the last the last data. But yet you're going to turn them down and say This isn't life-threatening. Why don't you look at those death rates then tell me it's not life-threatening? That's, that's a slap in the face.”
Bernice speaks: “One of the really important things I think that you could do for families out there, that are facing the same challenges is tell them what you know, that they need to know. Are there things that you can offer as advice or do this or don't do that, that would really help them as they face the challenges of their loved ones dealing with substance abuse?”
Kente speaks: “I would say for the person who's struggling with substance abuse, I would want them to know that you are not stupid, not ignorant you’re not, oh I let myself get like them. I’m so dumb. You're not, you just didn’t know these drugs would take over your brain like this. That's it. You're still valuable. You’re still something use, you know, don't, don't lose hope on who you really are because right now you're not really you. Well, what I will say to the family member who has a loved one is struggling. I will say that you're not the only one that has a family member this suffering. And the more you begin to share in a trustworthy way with, you know, just use your common sense on when the share, when not to. You'll find out that is everybody around you is, is impacted. And we can begin to heal one another when we share.
Bernice speaks: “It’s our connectedness.”
Kirsten speaks: “Don't isolate yourself and you need to do everything you can to seek support and, and have as many people around you as you can to help you navigate through this because it's overwhelming and, you know, like Chris has said many times today, you know, it's if you're reaching out in a moment of crisis and you can't do that by yourself.”
Jennifer speaks: “I think I would say to the families if you suspect that something may be going on with your loved one. Just educate yourself, you know, so that you can understand like what, what their brain may be going through or what like the processes where they could go for help. What support group they could meet, like there’s a PAL, parents of addicted loved ones. That really everybody that's in that meeting is going through what you're going through. Maybe not as bad or maybe worse. And educate yourself maybe on what drugs may look like or what drug paraphernalia may look like so that you can keep your eyes open or how your loved one could change, you know, are they do they have different friends? Do they, you know, are they spending more time in their room alone or they isolating themselves, you know, whatever. There's so many different examples of that. And then also, just educate yourself on if there should. If this is your reality, then. What can you do to help them instead of if you suspect than like, like, instead of just being in crisis mode when, when crisis mode gets there, then you can kind of have a like a path that you think you can go to?
Chris speaks: “To second a couple of great things Jenny said there, I tell family members, don't get mad at your loved one get mad at the addiction. Means so that's something that's not really that this is their behaviors being caused by that. So, get mad at that, find a way to fix, help them fix that addiction. And then I will for sure tell people that are struggling with it. Listen to the people that will help you the most, okay? Because addiction will lie to you. Yet. Don't listen to it because it's going to tell you the wrong thing. But if you listen to the people who really do want to help you try to be discipline and do that. So those are the two things I would, I would say to people.”
Jill speaks: “Something from a sibling perspective is I was able to realize fairly early on that the relationship that my parents had with my brother and the relationship that I had, it's a very different relationship and how you cope with someone that's struggling. And I was fortunate enough to be able to talk to people and seek help. And I think if I could share anything, especially with siblings, it's that sometimes you feel as if maybe you can't talk about it because you're in this balancing act between I have these feelings that sometimes are not very positive because at least for me as a teenager, having a sibling that was struggling, There were times of my life. We were also worried about guy. So, I, I've never ever angry with Guy because I know that that was, he was struggling and he needed that attention. But I was like, I don't want to bring it up to my parents because I don't want them to feel guilt for focusing on him when he needs that so much. And I just with siblings, especially to know that their feelings are valid and it is very, it's just so healthy to talk about it with people because it helps you navigate the very complex feelings that you are going through.”
Kente speaks: “I think it's important work because we have survived, right? So was there, survivor remorse. And It's important to know like it's not your fault. Because even as a child, you can, you know, you can begin to think, I would have done this or if I wouldn't have been misbehaving and they wouldn't have been stressed out, is it's not your fault. And you can, you can get through this. You can get to this and it might be difficult without your parents at their normal state, but you can get through it. It’s a success behind it.”
“Matt speaks: “From my perspective, being in recovery. My family did talk about it in the end, sharing what's going on and taking advantage of organizations, like educating yourself. Here I know there was definitely a period of time though where it my parents were struggling dealing with me for a while and I'm I don't know if it was so much of maybe this stigma with as well and they don't want to talk about it because maybe people would think did you raise him wrong or something along those lines. But that can carry into effect a lot of different areas of your life. If somebody's dealing without a loved one that could carry over into your work or something like that. And I just feel like the more open and can communicate about that, the more support you can receive. So just really being open and sharing about what the situation is and what's going on and allowing yourself to receive that support.”
Bernice speaks: “Thank you all for sharing because I do believe that you not only help others with your advice, but you help those of us who do research, trying to find answers, trying to understand the pathways. And I think that this information can go to people who maybe can change the situation. And I appreciate also very much the work that all of you are doing in response to the situations that you've encountered. So, thank you very much for coming.
