A grieving mother's memoir about addiction inspires a screenplay

"Slow Dancing with the Devil"--that's the title of Susan Bartz Herrick's book that's now being turned into a screenplay. It's a story that the grieving mother never wanted to write--a heartbreaking memoir of her son's relentless 20-year battle with substance use disorder, a fight he unfortunately lost due to fentanyl poisoning.

But Susan's narrative goes beyond grief. It's a beacon of hope, a call to action. Join us on this episode of Grieving Out Loud as we dive into Susan's journey, her unwavering mission to raise awareness about substance use disorder, and her fight to erase its stigma.

Also, if you or a loved one are struggling with substance use disorder, it's important to seek help. You can find a list of resources on our website.

Also, check out Susan's book, "Slow Dancing with the Devil," available at several retailers, including Barnes & Noble. 

Transcript

[00:00:00] Susan Bartz Herrick: One of my editors, Chaz Allen, suggested, how about dancing with the devil? And I said, how about slow dancing with the devil? Cause we did this for 20 years, you know, and it was a long, hard dance.

[00:00:20] Angela Kennecke: Slow dancing with the devil. That's the name of Susan Bartz Herrick's book, now being turned into a screenplay. It's a story that the grieving mother never wanted to write. a memoir of her son's 20 year long battle with substance 

[00:00:35] Susan Bartz Herrick: use 

[00:00:35] Angela Kennecke: disorder. 

[00:00:36] Susan Bartz Herrick: It's like if somebody were to pour a gallon of gas on you and light you up with a match, he said, at that second, you've got one or two choices.

You can run to that lake over there, jump in, which of course means going back and using the substance. He said, or you can stand there. And have every single inch of you be on fire for five to seven days. 

[00:01:04] Angela Kennecke: In this episode of Grieving Out Loud, hear how this mom is now on a mission not only to raise awareness about substance use disorder, but also decrease the stigma surrounding the disease.

[00:01:17] Susan Bartz Herrick: There have been diseases in the past which have been stigmatized, leprosy, even being bipolar was somehow associated with being bad. Now we know better. We have to, all of us, you know, fight and stand up against the stigma to get substance use disorder recognized. I'm Angela

[00:01:52] Angela Kennecke: Kennecke and this is Grieving Out Loud. Thank you so much for joining us. If you or a loved one are struggling with substance use disorder, It's so important to seek help. You can find a list of resources on our website, emilyshope. charity. We've posted a link in the show notes of this podcast.

Well, Susan, welcome back to Grieving Out Loud. It is just a pleasure to see you again. It has been about a year and a half, a little over a year and a half since you've been on the podcast. And you're joining us now to give us an update. 

[00:02:28] Susan Bartz Herrick: Wow. A year and a half seems like an eternity. I started to write about my experiences with Luke as we talked about the first time.

And I did get to put it in a book form. MacFarlane Publishing did pick it up and it has just been released. That's really exciting. 

[00:02:52] Angela Kennecke: Really exciting. I want to go back and give our listeners some background because I've read the book. Thank you for allowing me to read an early copy of it. Well, thank you for writing forward for it.

Very much. Thank you.

For those of you who missed the first Grieving Out Loud episode with Susan, her son's battle with substance use disorder began at an early age when doctors were prescribing patients

[00:03:23] Susan Bartz Herrick: Between 2004 and 2009, when he was a young teenager, he was prescribed some form of Oxycontin four separate times. Matter of fact, the medical community was really passing it out like Pez at that time because they were going on what Purdue Pharma told them that it was only 1 percent addictive, which of course was a dangerous lie.

That dangerous lie led 

[00:03:49] Angela Kennecke: Luke down the difficult path of substance use disorder. It was worsened in 2010 when Luke, Susan's only child, survived a near fatal crash. 

[00:04:02] Susan Bartz Herrick: He was on life support for a week, 27 broken bones, lacerated spleen, other internal injuries, and his chance of survival was pretty much marked at 1%.

Fortunately, he did survive, but only five years later, he had a medical device migrate and perforate his aorta and colon. So really, in the 11 years after his accident, Luke was hospitalized about 12 times, had four major surgeries, three intestinal blockages, and each and every time he got off the narcotics said.

It was not without drama, mind you, as there was no manual to guide us through, and the medical community at the time was no help.

[00:04:51] Angela Kennecke: Even though Susan says her son never received any help from the medical community with his addiction, Luke worked hard to find recovery. He was successful several times, but each triumph was short lived, as doctors subsequently prescribed him more painkillers. 

[00:05:09] Susan Bartz Herrick: As we were going through This journey, I really saw how clueless the medical community was in how to treat somebody with SUD, Substance Use Disorder, when it came to needing narcotics for surgery.

Furthermore, they really didn't care. They once gave Luke up to 800 milligrams of oxycaldrin a day, which is an end of life cancer dosage, only to abandon him when the FDA and the DEA made policy changes that could affect a doctor's license to practice. And there was one drug that could help him walk off the narcotics called Suboxone, but it was regulated in such a way that only three doctors in the entire state of North Carolina were allowed to use it.

And then they could only treat 10 to 30 people a month. But my son did survive and thrived, got into a special Ivy League school program while finishing his associate's degree in political science. He became a scratch golfer, started his own successful CBD oil business. But, you know, the price we paid for his life was substance use.

[00:06:25] Angela Kennecke: Susan says her son never quit fighting during his decades long battle with substance use disorder. Despite his unwavering determination, fentanyl took his life in 2021.

[00:06:40] Susan Bartz Herrick: Trying to self medicate a general anxiety attack that he had. He was dual diagnosis. He asked for Klonopin. That is not what he got. So, I mean, it was obviously So heartbreaking that he had come so far only to go down by this one drug But I was really dumbfounded to find out that so many people Really didn't care and in finding out why didn't they care it was because of the stigma with Substance use disorder.

I mean finding out that it is classified as A chronic disease, just like cancer, diabetes, COPD, and yet, Patients who have SUD, people who have it, are simply not treated with the same respect that those with the other chronic diseases are. And you know, those other chronic diseases are only 10 to 15 percent genetic.

The rest is lifestyle and environmental. And yet, People who have had a heart attack don't go to the hospital and have the emergency room tell them I'm sorry, we can't treat you, you already had a heart attack this year. And yet those with SUD, that's what happened. It certainly happened to us on more than one occasion.

I mean Luke got out of the hospital, major surgery, we weaned him. Off drugs, he went into a treatment center for detox. Three weeks later, he had an intestinal blockage, so they had to put him back on narcotics. When he got out, I called the insurance company and said, he needs to go in for a detox. And they said, I'm sorry, just one per year.

And I said, look, he had to go in. They did not care. 

[00:08:40] Angela Kennecke: Well, what strikes me, Susan, about Luke's story is that Luke had so many unfortunate things happen to him. where he was prescribed opioids before his brain was fully developed. He had this horrible crash and then the aftermath of the device in his body that, you know, went awry and was causing pain.

And his addiction was really caused by big pharma and the medical community who didn't have an understanding of what they were doing. Truly, they were lied to. We know that. But. Yes. And then to be stigmatized once this is basically perpetrated upon you is just such a horrible, horrible thing. And it's so confusing at the time, you know, as a parent, there's so much confusion in trying to navigate this and trying to save your child, yet the traditional medical communities blocks you from doing that or the insurance companies.

It's a catch 22, right? Very much so. And it's put back on the person with the disease. Like you said, Luke had periods of time where he was doing so well, but it was all on him. It was all on him. And eventually he succumbed to his disease. And then you have the fentanyl in the market. He thought he was getting Klonopin, but you have fentanyl and everything.

And I just think what a mind blowing tragedy. And you talk about people not caring because of stigma. And I know this is still true today that many people see people who are suffering from substance use disorders just having, you know, they're bad people or they just need more willpower. We're starting to understand obesity in a different way now, that obesity isn't just about willpower.

And that's a good thing. I mean, I'm really glad, but we also need to stop classifying people as less than human, no matter how they started using drugs. But when they were given the drugs by the doctors. And the pharmaceutical companies. I mean, it's just, it's mind blowing to me. And we're starting, I think people are really starting to wake up to this because of a lot of shows that have come out.

You're familiar with them, shows like Painkiller and others. You've got a personal story to tell. I think they tried to sort of take in a composite of a patient, right? So they've sort of taken someone who has prescribed this and kind of wrapped it all into like one person. Yeah. But Luke's story is just so compelling and also unbelievable.

You can read about Luke's story in Susan's book, Slow Dancing with the Devil. We've posted information on how you can buy it in the show notes of this podcast. And while you're checking that out, we'd really appreciate it if you'd leave us a positive review for this episode and share it with your friends and family.

It really does help further our mission to raise awareness about substance use disorder by decreasing the stigma that will hopefully get more people the help they desperately need. 

[00:11:41] Susan Bartz Herrick: When Luke was first time in treatment, and of course, those were the days I thought, well, 30 days is all he needs. I was given a poem about the drug being the devil and it impacted me because it started to wake me up as to what actually did go on in the brain and the title just kind of evolved from that, actually, one of my editors, Chaz Allen, suggested how about dancing with the devil?

And I said, how about slow dancing with the devil? Cause we did this for 20 years, you know, and it was a long, hard dance.

[00:12:29] Angela Kennecke: In addition to the book, Luke's painful, unbelievable journey has also sparked the creation of a screenplay simply titled Luke. 

[00:12:38] Susan Bartz Herrick: Yeah, it's based on the book. Not taken directly from it. You know, it's a 90 minute movie and my book covers 20 years. My book goes into a lot more detail and documentary of the disease and the medical things.

But I'm very honored that Luke's best friend, Jacob Taylor, who is an actor, pushed this and he got some pretty well known screenwriters to write it. And they're out there pitching it right now. Tom Foran. is one of them. And Tom writes for Yellowstone. So, Oh, 

[00:13:17] Angela Kennecke: that's encouraging. I really hope that it happens and it's turned into a movie.

But the writing of the book, was that catharsis for you? Was that healing? Yes, 

[00:13:25] Susan Bartz Herrick: it was Jacob who told me that he wanted to make a film. So he asked me, you know, just to write an outline. And I started to and everything just came gushing out. Matter of fact, My book is around 90, 000 words. I was over 160, 000 words.

And, and my editor was very close. A friend of mine just said, Susan, let me help you pare this down. So it went from a cathartic spewing, going through everything, to then the craft of writing and then adding in the information that I really think parents need to understand. That's it. Angela, one of the things that just breaks my heart is I'm on some of these Facebook groups with parents who have lost a child to fentanyl poisoning and hearing them just say things like, well, he just didn't want it enough to get well, or, you know, he was nothing but an addict.

It just, it breaks my heart because they don't understand how. These drugs change the bioneurological chemicals and how the brain operates. And one of the examples, you know, that I use is the last summer that Luke was alive, he and I were standing out in the backyard and I watched him go through withdrawal about four times without any help because we couldn't, you know, Afford it, or you know, the hospitals, whatever, and I asked him what that felt like, and he said, Mom, it's like if somebody were to pour a gallon of gas on you and light you up with a match, he said, at that second, you've got one or two choices.

You can run to that lake over there, jump in, which of course means going back and Using the substance. He said, or you can stand there and have every single inch of you be on fire for five to seven days. He said, your eyeballs, your hair, your legs, your knees, inside, outside. And he said, and the worst thing is, if you jump in the lake and you come back out, you still have those fumes.

And you have to be very careful that you don't get anywhere near a spark or a spark doesn't find you because you can go back up in flames. And he said that's called a trigger. For Luke, that trigger was he had an anxiety attack and he was just losing it. He reached out and unfortunately it was fentanyl.

But those parents don't understand what it physically is like for the person who has SUD and the physical pain and the only way to get rid of the pain is to live through that withdrawal or to use a substance. And what the public doesn't understand is at this point the tolerance has built. So, they're not using the drug to get high, they're using it just to feel normal or not to feel in pain.

There's so much information out there, Angela, in the medical community about SUD, and this is something else that I found from my research. There's a ton of information out there, but it's written in medicalese. And, as a journalist, there's You know, you have to write for, what is it, 6th to 8th grade level understanding?

Right, in simplified terms. You have to explain things 

[00:17:18] Angela Kennecke: in a way most people can understand. 

[00:17:19] Susan Bartz Herrick: Yeah. Right. And I was talking to a researcher not too long ago. She and her colleagues have this wonderful paper about the 13 precursors for addiction. But, oh, I had to dig in there with my medical dictionary and go through and I said, Do you have a simplified version of this?

And she said, No, as a matter of fact, we just had a conference and we're trying to, you know, find journalists to take our information and really be able to bring it to the level of normal public. One of the things that I found out too, is that 2 out of 10 people have a genetic predilection for addiction.

You know, and this is why some people get dependent, addicted, why others are only psychologically addicted. SUD, just like cancer, you know, there's many different levels, many different ways that it affects. Thanks. 

[00:18:28] Angela Kennecke: Well, and if you think about it, 49 million Americans suffer from addiction, substance use disorder.

Many of those, of course, are alcohol, and alcohol is an acceptable addiction in our society, right? Right. And it's funny to me how we distinguish between substances. Yes. And because many substances are illegal, but even we distinguish between pharmaceuticals and alcohol. You know, people can be prescribed those pharmaceuticals, obviously, they can be obtained legally.

So I just think a substance is a substance is a substance and if in the how our brains are wired, we're all addicted to something. I say most of us are addicted to our phones. I happen to like the dopamine hit I get when I have a little bit of chocolate, you know, I'm just lucky. I'm just lucky that I don't have the genetics, so I wasn't in the right environment or substances weren't introduced to my brain at a young age before it was fully developed.

And I think that it's just, you know, by the grace of God, right? So I just think that people need to look at it in those terms, but they don't. They don't. And people often don't want to even admit their own addictions. And because alcohol is such a socially acceptable addiction, many people are walking around and suffering from that, but aren't talking about it or doing anything about it.

[00:19:41] Susan Bartz Herrick: But I'm hoping, Angela, like, As you said earlier, you know, a dopesick and painkiller, hopefully my book can be added, you know, obviously I am not in for any kind of fame. It's, we've got to get the news out there as you said, you know, education is power and through stories, we have to make this impact. So there will be.

There have been diseases in the past which have been stigmatized. Leprosy, even being bipolar, was somehow associated with being bad. Now, we know better. We have to. All of us, you know, fight and stand up against the stigma to get substance use disorder recognized. And there was a study that was done in New York City, and they were polling physicians, and they found out that 40 percent of physicians there had a stigmatized version of those who came in who were addicted, and they're Reporter said, so these are the people that the Hippocratic oath does not apply to.

Right, 

[00:21:04] Angela Kennecke: and we're working hard right now on de stigmatization among medical health professionals and the de stigmatization of MAT, because as you know, that having the ex waiver did no favors. It was so hard, doctors didn't want to prescribe it, and many physicians even see it as substituting one drug for another, which it is not.

So we're working really hard on that, but I think Medical schools have to do a better job of training their physicians and as you know, maybe they get like one day if they're not going into that profession. 15 

[00:21:37] Susan Bartz Herrick: programs out of 180 teach about addiction. That is 8 percent of the medical schools. 

[00:21:46] Angela Kennecke: That is such a disservice because you also think about all of the other medical conditions caused by addiction.

substance use disorder. So, you know, absolutely. It's just, especially in today's world. And I just think that's a real disservice to society. If you're churning out physicians who are not trained in this and who don't know how to deal with people in a compassionate way. I certainly dealt with stigma with Emily in the medical profession.

There was a time she was suffering from headaches and she had had horrible headaches since a young child. In fact, she had a CAT scan at about eight years old. Age eight or nine that, you know, didn't show anything, but she went in for headaches and she was, you know, basically shamed out of the office, told she was seeking drugs.

And then also I brought her into a physician because she was picking at her face and that physician prescribed some cream and anti anxiety medication, but never, ever once asked about substance use. So probably uninformed that substance use can cause someone to pick at their face, whether that's meth or heroin or whatever it is.

So, I just think that time and time again, people are let down, just as your son was let down time and time again by the medical community and insurance companies. For these insurance companies, for example, we just had an Emily's Hope Treatment Scholarship recipient go in for treatment for a second time after about three years, had to go back because she had relapsed, and insurance kicked her out after 21 days.

Now, you tell me how anyone is going to be helped or how their brain is going to recover in 21 days. We know it takes 18 to 24 months for the recovery in the brain to start. Yeah, to start. Insurance companies dictate these stays. Or if you can go, like you mentioned, to treatment once. It's just, it's incredibly appalling.

And it's all about money. It's about money. That's what it's about. And very frustrating though. 

[00:23:37] Susan Bartz Herrick: CNN put something out, I think it was in 2017, that of all of the millions and millions of dollars spent, most of it was under the category of cleaning up the mess, and 1% went to research and development. When you think of it, if you have diabetes, you have over 30 drugs to choose from.

Those with SUD have about three, and there are challenges. I mean, even people trying to say, well, you can't have anything and be clean. We've got to get correct information out there, scientific information out there. And unfortunately, it is to the people who should know a little bit better. When I told my doctor, it was three weeks after my son passed away.

She said, Oh, I'm so sorry. She said, But you know, we're doing so much now to make sure that that doesn't happen again. I said, Thank you, but what are you doing for the people who are suffering from SUD? And Angela, the look on her face, Oh, hadn't even thought about that, you know. We have to do something and thank you for everything you do.

I follow you and I'm watching you rise higher in being seen and your efforts and I applaud your efforts so much. Well, 

[00:25:13] Angela Kennecke: thank you. But I always say it's going to take all of us, right? It's going to take all of us joining hands and working together to really combat this problem on so many levels. You know, you have the medical level, the stigma level, and then you have just the fentanyl pouring into this country.

You have that issue. You've got the issue of the criminal justice system and prisons and there's so many issues. So it's no one person can tackle it all. And I think that that's why it's, it's so important to get Luke's story out there and Luke died in 2021. Yes, he did. August. Yeah. So it hasn't really been that long.

It's only 2024. How is your grief today? 

[00:25:53] Susan Bartz Herrick: Uh, depends on the day, right? 

[00:25:56] Angela Kennecke: Yeah. 

[00:25:57] Susan Bartz Herrick: Yeah. No, I, I had people say, Oh, aren't you excited about this? And I said, no, no, I'd rather have written this book. I would rather have my son here. One thing that gives me peace is that Luke wanted to get into politics. He wanted to either get a master's or a law degree.

And he wrote some incredible papers about the opioid crisis. Of course, one of them said, Fortunately, I have survived. But, what I feel, I'm taking up his mantle, and I'm continuing his work. So, we've all, who've lost children to this, have had an amputation of the heart. And, I think, like you, being able to do something to help others helps with the grief.

My faith tells me I'll see him again one day, and oftentimes I go to bed and say one day over one day closer, you know, and I'm just a day at a time. 

[00:27:10] Angela Kennecke: And none of us expected our lives to To turn out like this. I mean, not a single one of us would have written our script this way or planned it this way, but I do think you are doing the best that you can with the cards you've been dealt.

I mean, I think we all are to some extent, but I think carrying on work in your child's name to try to help others is a very noble thing. Luke's story is extremely important and represents so many people and so many families who've been, you know, to hell. I don't know if once they die, you're probably still in hell in many ways, you know, you talk about slow dancing with the devil.

It doesn't really end with their doubt. 

[00:27:51] Susan Bartz Herrick: No, it doesn't. No, it doesn't. I prayed, you know, for God to take me for a long time. I really did. But I want to get this done. I'm leaving my son. a legacy. And by saying his name gives him honor. And that's my motivation. Just like, you know, your Emily's in honoring them.

It helps. It'll never take away the pain. Not ever. No, not ever. 

[00:28:24] Angela Kennecke: But you should be very proud of this book because not everybody can do that. Not everybody. And you've done it in a short period of time, you know, within three years of his death is, you know, Unbelievable. I mean, that's, 

[00:28:35] Susan Bartz Herrick: that's all I did. I woke up, I made a pot of tea and I wrote, I went to bed.

I'm 

[00:28:42] Angela Kennecke: so glad that you did it. I love the fact you talk about keeping his name alive. That's what I always talk about, keeping Emily's name alive. But if the movie that comes out is called Luke, I can't think of a better way to keep his name alive and a way that he would really appreciate as well because he was part of that world in Hollywood at the time of his death.

So 

[00:29:02] Susan Bartz Herrick: yes, he was. 

[00:29:04] Angela Kennecke: Thank you, Susan, so much for coming back on the podcast. It's always wonderful to talk to you. And I really hate that I make friends with people because their children have died, but I am so grateful to call you friend. 

[00:29:17] Susan Bartz Herrick: I hear you. Yes. And I thank you for everything you've done for me. Thank you so much.

[00:29:22] Angela Kennecke: You're welcome. Thank you.

And thank you for taking the time to learn more about substance use disorder and our nation's devastating fentanyl crisis. Together we have the power to make a difference and prevent more senseless deaths. Until next time, wishing you faith, hope, and courage. This podcast is produced by Casey Wandenberg King and Anna Fye.