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Description

David Smith watched as chronic pain and addiction transformed his loving father into a vengeful man who was unrecognizable. David has spent a lifetime trying to outrun his father’s fate – but now he’s looking for answers. How can we build a better healthcare system and stop the cycle of sickness, trauma and loss? In episode one, we explore his family’s story, covering everything from childhood tragedy and generational trauma to opioid abuse and Mormon excommunication.

Transcript

SPEAKERS

Eddie & David Smith

David Smith  00:02

Hi, I’m David. I work in healthcare as an economist. I am a husband, married for 13 years. And I’m a father to three kids all under the age of 10. So the soundtrack of a typical day in my world sounds like this.

David Smith 

But until very recently, things sounded quite different in my head. Since my dad died, I have felt a doomsday clock counting down in my own head. And this irrational fear that I would end up becoming just like my dad. This just debilitating fear, I would end up at some point soaking my world and kerosene lighting a match and having an untimely death. And no matter what anybody said to me, and trying to reassure me that, oh, you’re not your dad, you’re such a different person, that would never happen to you. The Doomsday Clock just played on, it got louder every year. And about a year and a half ago, the sound of that clock reached a deafening decibel level.

David Smith 

This Doomsday Clock triggered, what I’ll just describe generously and the abstract as a moment of extreme personal crisis. My wife and I decided to leave our faith, the Mormon church. And when you’re raised in something for decades, and you have come to define everything about who you are, where you came from, where you’re going, how you should live, the rules you should abide by, when you suffer from a system like that. I don’t care who you are. That is a traumatic experience. And it occurred to me that so much of my journey had been wrapped up in this Doomsday Clock and in my own father’s journey, and that I didn’t know nearly enough about where I came from and who I was.

David Smith  02:25

So on a Thursday morning, I woke up with my survival instincts and full gear. And I knew I needed to learn a lot more about my history, where I came from, and what made me really tick. And I packed up my car. And I said goodbye to my wife and children not knowing exactly when I’d be back and I hit the road. And I set out for my childhood neighborhood, which was about six hours away. And while driving to that destination, it hit me that I needed to reconnect with my dad siblings, most of whom I’d never met, to learn much more about who he was before he became my father. And that journey ultimately led me to my uncle Eddie.

Eddie 

Like a father, he would take me to, to a function, and then we’d go out and get pizza afterwards. And he was just there, it was just like that, you know, the only person in my life that I could look up to that gave me any hope that things were going to be okay.

David Smith

Welcome to the COST OF CARE. I’m your host, David Smith. The truth is, despite being a healthcare economist, I’m not actually that interested in “healthcare”. I’m way more interested in health. Because up until now, I’ve lived a life where several of the people closest to me that I love have lost their health. I’ve watched how chronic pain can literally change a person overnight into someone else. And how stigma and lack of access can be fatal. Sure, it’s important to have great doctors and we definitely need to fix our nation’s healthcare system because it sucks. But when you look at the factors that actually impact our life expectancy, like how long we actually live, it’s only about 10%, healthcare, 30%, genetics and 60% everything else. Things like housing, food security, trauma, isolation. These are all things driving up physical stress and leading to chronic disease. And every one of these are factors in my own family story.

David Smith

Eddie is the second youngest of six children, and is the little brother to my father. He lives in San Diego, California. I barely remember meeting Eddie as a child once or twice. And he was always there was like this folklore around uncle Eddie, the fun uncle Eddie. He was kind of he was the anti my dad, or my dad kind of be really stoic and serious. Eddie was just fine. But I, not until last year, I had not talked to Eddie in 30 years. We had an opportunity to spend some time together last summer I know after, like 30 years having not said a word to each other. Yeah. Yeah. And I wanted to ask if maybe he would spend a few minutes describing David. And who he was to you, years ago.

Eddie  06:16

I literally looked up to him, like a father figure. And it’s just now that I look back on all those days, it’s funny, because he kind of stood out as the only one in the household who actually acted like a grown adult. My mother was always drunk. My sisters were just, you know, enabling her in a sense. And he was he felt like he was the only person holding the household together.

David Smith 

Eddie was kind of able to articulate a bit of an arc of how he saw my dad’s journey. As a sibling, and as somebody who had such a high esteem for my dad.

Eddie 

It’s a funny thing to be submerged in insanity, all around you. And you look at that you’re adults, at least my mother in anyway, I just needed some, some hope. And he would try to insure me, you know, don’t worry, it’s gonna be okay. You know, we’ll get through this. But even you know that as a second grader, a third grader, I was, you know, he was the only thing I had to look up to at that time.

David Smith

It wasn’t always like this. Things change for the family when my dad was 11. And he lost his dad. And the family descends into chaos. He was born in this upper middle class, you know white male American won the genetic lottery, he’s smart, like, the sky is literally the limit. And everything is as normal and stable as can be imagined until his father dies from this very rapid, undetectable brain parasite and his mother has a deeply human, deeply emotional reaction to that and she plunges the family into chaos. They move every two years, there’s an alcohol use, severe alcohol use disorder, suicidal tendencies, depression.

Eddie  08:18

You know, we went from living in a nice trailer with a washer and dryer. And next thing you know, we’re living on this island sleeping the back of a U-Haul. And it was just a shock to the system. I can only imagine what it was like for him, because you know that my sister’s has already exited stage left. And they had got the heck out and he was the oldest sibling left. And we were there in this ridiculous situation. How do you end up in this situation? Why would you do that? But we did it. It happened. We were living in a U-Haul in a campground.

David Smith 

My dad’s having to work full time while going to high school full time while trying to raise siblings full time. And though he’s described as being this pillar during that period, he’s 16 years old. So he made the decision to pursue legal emancipation from his mother. I suspect for him there was this decision that said I could do the hard thing of emancipation. But I can have this much better set of circumstances fighting against this really difficult environment where I know it’s important for me to be but it’s gonna end up killing me.

Eddie 

After everybody was exiting the courtroom and the decision had been made, or whatever. We were standing in the hallway, and you know, my brother is trying to say goodbye. But in my mind, the only sane voice that I had in my life was leaving. To cap it all off, you know, we’re out in the parking lot. And I see him get in the car. And I’m in the backseat of some station wagon, and he’s just looking out the window, and he’s waving goodbye to me, and I’m waving goodbye to him. And that was it. Several things were broken inside of me. As I watched that scene, I mean, the hurt, you know, you can’t comprehend it, it just gets way it goes way down into you, and you just take that with you for the rest of your life in a sense.

David Smith  10:34

When he describes that, he gets deeply emotional and, and you can tell that that’s a truism. That what may have once been possible in Eddie’s life is now no longer possible because the of the events of that particular day. But at the end of our time, together, we stand up and are saying goodbye. And he takes a step back and he looks at me and he shakes his head and he says, I can’t get over, that you are the spitting image of your father. For years, I would have taken that as an insult, to be frank. For years I had been running from any semblance any echo of my father being in me as a means of fighting that clock.

David Smith 

But in that moment, having heard Eddie described the importance of my father in his life and describe the character attributes of somebody who by account I would have really enjoyed being friends with looked up to, sought counsel from. The sounded like a really good dude. It’s not the same guy I knew for most of my life, and it was the first time in my life that I felt like I didn’t have to run from the echoes my father.

David Smith  12:19

Hey, listeners, we want to hear your stories. Have you been hit with a surprise bill after a procedure? Did you have a run in with the health care system that felt infuriating or unfair? Or have you struggled to find in network providers in your area? Share your story now by calling 8334-LEMONADA. That’s 833-453-6662 or email us at costofcare@lemonadamedia.com.

David Smith

While the person Eddie described is not the man I knew for most of my life, it reminded me of what my dad was like when we were little before he got sick. He’s thoughtful, he’s funny, he was shy, he was, socially he was awkward. I loved. I loved him. I miss him. I missed that person, that person left, that person started to leave. About the time I turned 10 or 11 years old and it was a long accent. It was a long progression. He is diagnosed with a disease called Chronic Fatigue syndrome. The features of Chronic fatigue syndrome are twofold. One is you feel like you have […] all the time, you’re just constantly fatigued and constantly exhausted. The second thing is it’s described as being a very painful disease.

David Smith  14:01

Around this time, my dad really, he’s really started to withdraw from the family. He would sleep all hours of the day when he got up, he would be wincing in pain, complaining about pain. If you asked him to kind of go outside and play catch or tag or run to the store or something he would invoke the pain he had and that he was needing to rest. My dad kind of became very off limits. I think my mom was trying to kind of shield him from activity. And in turn, I started to try and shield him from activity. But my dad kind of went from being this playful kind of charismatic, you know would wrestle you in the living room kind of father to somebody that if his door was closed, you were to be dead quiet and you could not talk to him until the door opened.

David Smith

Fast forward a few years later, you paid our family a visit when we were living in Ohio, and you kind of described to me your view of his state at that time. Was he that same person that your 8,9,10-year-old brain remembers, or what? Who was the person you encountered years later after he had married and had children and was beginning to try to fulfill some of his ambitions.

Eddie 

You know, it was a big deal for me. I hadn’t seen him in ages. I mean, I really hadn’t seen him as an adult. His take on the whole entire getting sick thing was because he was killing himself to make ends meet and make this happen and make that happen. And the way he put it was, that’s what caused him to end up in the situation he was in. If you think about it, if somebody says that there too much pain to get out of bed, but they can’t show you any wounds, and they can’t, you know, they can’t demonstrate anything that, you know, I think he would kind of felt like what the heck is going on with me? And there were no answers. He had no answers at the time. He was basically becoming disabled in a sense to where he could not pursue the life that he wanted, or that he felt he needed to have to be a successful father and husband. And I think that kind of really broke him down inside and he didn’t really have a lot of answers.

David Smith  16:36

He’s lugging around this trauma with him from this past life trying to start over. And he starts engaging with doctors throughout the system to try to find a panacea and some doctors do the thing he thought was quackery, which was, meditate, go for walks, think we know that’s a little less quackery today, other doctors would prescribe things that would help with pain, but they wouldn’t help yet others would say, well, you’re clinically depressed, you’re ticking time bomb, you’re not dealing with your trauma. Take all these antidepressants. I mean, they just pushed antidepressants out of him.

David Smith 

And one day, a doctor says, well, there’s a drug that I think could help with pain. Let’s try it out. It’s a drug called Lortab. It was, it was OxyContin before OxyContin got cool. It’s an opioid. It can only be prescribed by a clinician. But at this time, there weren’t real, like, we don’t have a social awareness of the danger of this stuff. And so doctors were pushing this. And you know, it was a way to drive up encounters. And it worked. Until it didn’t.

Eddie 

David was part of a genetic situation. My mother had addiction issues, and the first three siblings all got addicted to substances. My sister Ruthie got addicted to heroin. My sister Claire was an alcoholic for a while, she’s not anymore. And my brother David went down that path too.

David Smith  18:11

The way it was raised to me is my parents kind of sat us down. And they tried to explain to us in as simple terms as children can understand what was going on that he had been prescribed something and that he had become addicted to those things and that we had to go to an AA meeting with him. And it was really at that moment that I kind of realized there was something kind of more serious going on, I still didn’t totally understand addiction, or how it had led to this, but I now understood that not only was he sick, but he was on these pills that were responsible for his withdrawing. From the ages of 15 to 17, major parts of my life were ruled by his addiction.

David Smith 

The moments he would try to stop, I kind of became the keeper of his medications, the moments where he was bingeing, I would be the one that would have to ride my bike to Kmart five miles away on a Saturday to get his bills. I remember going and seeing a movie with him and driving home from the movie and he literally was passing out and so I had to reach my left foot across the center console to accelerate and brake and steer the last two miles home, like these were these weren’t one off instances This was every week, something like this would happen. And I went from kind of being aware of it to being thrust right into the middle of it and living this experience with him.

David Smith 

I can distinctly remember three periods of treatment. He went into recovery once when we were in Salt Lake City. I would have been about 15 years old that seemed to go okay and had a little staying power, but didn’t last because we suck at recovery in this country. And so he goes into recovery again in Kansas City. And this is apparently a recovery environment where it’s easy, very easy to sneak in contraband, like drugs or NyQuil. And you’re being a devout Mormon, you know, he’s not ready to go to the place of shooting up heroin or something illegal, but NyQuil, you know, you’re allowed to take NyQuil as a Mormon now, and Mormon doctrine doesn’t say anything about how much so he begins to use that as a drug of choice in this facility and setting.

David Smith  20:46

And he got involved with a woman at the treatment center, which became even more destructive for the marriage. And as I recall, he leaves the treatment center. And you remember, my dad is a really deeply religious person. And so he may not have thought he was sending a lot with the drug use. But he definitely knew that any level of infidelity outside of his marriage was a major sin and the Latter-Day Saint faith. So job one for him, I think, was to kind of confess. So the church excommunicated him, which is an incredibly violent process. And when you’re excommunicated, you can’t pray in public, you can’t take the sacrament, you basically have to get rebaptised to re-enter the church, and so as a person that doesn’t care about the faith. Not a big deal.

David Smith

But a person who’s like, that’s one of their whole anchors, that is, God that had to have been a hard thing for him to go through. I was disfellowshipped at the age of 18. To give you an example of this, disfellowship is different from excommunication, excommunication is like you’re kicked out of the church. disfellowship means like, you don’t, you don’t get a lot of the rights in the church, like you’re very limited, you’re on probation, basically. And I was disfellowshipped, because I’ve had sex with my high school girlfriend. And I had confessed that but this was also at the time my family is falling apart and disintegrating, I have dropped out of high school to work a job to make ends meet and to support a couple of family members.

David Smith  22:31

I am lost like I am wandering in the wilderness and I do this thing that was against the precepts of the church. And I remember that this 18-year-old broken person stood before three men and was basically declared to not be worthy enough to pray in public or take the emblems of the sacrament because of unworthiness, when my life was on fire. And the one thing they could do for me was to limit participation and faith. And I needed some, I was looking for anything. At that moment in my life, I was looking for anything that could reach out a hand and help me figure out what I was going to do with the rest of my life. And everywhere I turned, I was just, I was rebuffed. I was left to be on my own. And if that’s part of what my dad went through, then I can understand why that would have been a huge burden to him.

David Smith

He starts to descend into a state of mind, where he is losing control, the depression, the anxiety, the sense of social isolation, he begins to detach from the world around him. Like he did when he emancipated, he had come to conclude that the world he had built and the world he had known was no longer compatible with who he was. And the only thing he knew to do was to hit the reset button again. And my mom makes a declaration that she’s naturally done after this and everything else that’s happened. So he finds a job moved to Arizona. And he’s out there for a few months, by all accounts, he’s doing well, he’s starting to mingle with single people and he’s going back to church and he’s working as repentance process, and he meets Laurie, who’s this very vibrant, cheerful woman, but she has four children and she is also a single mother.

David Smith 

And they’re just flailing. And then his descent back to where he was goes really, really fast from here. He knows how to medicate. He knows how to escape. He’s an escape artist at this point. And he goes right back into the deep end. He’s now becoming the anti-David, the anti-David Smith Sr. He’s vengeful, he’s spiteful. He’s vindictive, he is blaming others for his plight. Everybody’s out to give him these paranoid. And he’s just sad. He gained 40 pounds. He’s sleeping 15 hours a night. And the home environment begins to deteriorate really quickly. There are now six children. And I think what had to have been a three-bedroom home.

David Smith  26:11

And all these children are dealing with their own traumas, and they don’t know each other. And so friction starts to get created there and nobody’s paying attention. The same level of denialism that had driven his journey now up to this point, really sets in and this starts to kind of conclude this transformation of him. For me, as well balanced, intelligent billion sky’s the limit kid to this wreck of a human being who is hopelessly addicted to narcotics, who has burned down the world around him and is now just living from day to day.

Eddie 

It’s probably 95′ or it could have been 96′ was the last time I saw him. And he came to Northern Kentucky, and he went to my mom’s to see my mother. And he had rented a car and he was just back in the area. He would make the rounds. I think he would talk to some of his cousins. And he was just standing out there was a sunny day in the summer. And he had rented this Ford Mustang convertible, and he’s just sort of, but he was there. He was healthy enough to be there. You know, it was a weird thing, because you’re standing there talking to somebody that you don’t really know anymore. You don’t know. And it was it was sort of palpable the feeling. It was sad and sense.

David Smith 

On Tuesday, nobody’s heard from him all day. which is unusual. So Laurie, dispatches, Joseph, my brother’s a year younger than me, must have been 18 at the time to go check on him. Joseph has a key to the apartment. Joseph knocks on the door, nobody answers so he lets himself in and he finds a studio apartment. He didn’t have to search very far. He finds my dad. He’s slumped over his desk. He’s in his underwear. He’s slumped over his desk, there’s a stack of bills. The computer screen is up on his budget screen. Presumably he was working out his finances. He was dead, he was just dead. The coroner concluded he had yet overdosed.

Eddie  28:55

It’s a sad thing. And I think that’s part and parcel. And what this conversation is about is how people end up in these situations and just in terms of health care. He was sort of like a slave to this addiction. But what could have become had things been different if my father had lived and everybody would have been raised like normal human beings, they would have went to college, they would have had their life everybody would have got together on holidays and none of that, none of that happened. There was none of that. So my brother was churned out of a situation just like the rest of us were, that’s all we know.

David Smith 

He was buried, I couldn’t go to the funeral. I just lost my job. I had no money. I was 19 or 20. watching all this kind of unfold across play. But by all accounts, there were less than two dozen people at this funeral. He left the world with a whimper. And that’s the tragedy, you know, in so many ways my dad, like my, my dad ruined the lives of all of us in some ways. And when you tell the story of my dad, he’s the villain. The older I get, and as I’ve gone through some of the things I suspect he went through, when he was my age, I have come to see him as the victim and not the villain.

David Smith  30:43

And I feel this overwhelming sense of sorrow for him. And these things consumed him and they didn’t have to. And he would have lived a long, vibrant, happy life. Filled with children and grandchildren and weddings and vacations, cruises. Professional successes, have the things that happened to him earlier in life not been so overwhelming and had he had had the ability to really process those things later in life. The void my dad left impacted everyone in our family, especially my younger brother, Joseph. Poor Joseph already had so many problems. This was devastating.

David Smith 

My life would have gone differently had I been the person found my dad like that, that’s an image that doesn’t ever leave. Joseph’s trying to reconcile with his own trauma from a decade of dealing with all of this and Joseph asserts that he’s been diagnosed with Fibromyalgia, which of course, like Chronic Fatigue syndrome, is a painful disease, he very quickly develops a substance use disorder. And Joseph doesn’t go for very long like this. It was a Saturday morning; I got the phone call from my mom letting me know that Joseph had overdosed and been found dead. And I remember, just, I just fell to my knees. Joseph was 18 when he passed away. Young, really young.

David Smith 

When he died, I went in, I was able to collect some of his things. And one of the things I collected I still have it is a letter he wrote; The letter is titled “Who I am and how I feel.” And he unpacks this complex personality who has tried to reconcile with the events of his life and his father who he loved fiercely, but who he felt had abandoned him from time to time and then committed the ultimate abandonment with leaving life and describing this overwhelming sense of isolation and loneliness and despair not being understood and not knowing what to do.

David Smith 

And it breaks my heart to this day to think of that. So now at this place, I’ve lost my dad to an overdose within two or three years I’ve lost a younger sibling to an overdose. A few years later, I lost my younger sister to an overdose. And that left three of us standing. A mother who I couldn’t quite tell if she was complicit or co-conspiratorial and all these terrible things that have happened. And a little brother who was brutalized by the events that took place in the home in Phoenix, and has had an insanely difficult road putting his life together. That was it. It was ashes.

David Smith  34:51

If I do play forward the what if scenarios for all three, hell, for all six of us, my two parents and my three siblings and myself and I look and I, anybody else on this planet, I probably have as clear of a sense of who they fundamentally were and what they were fundamentally capable of in life. Like all of us, every single one of them had their own unique talents, passions, capabilities, fears. And for each of them, like, everyone, the sky was the limit, they were born that way with the sky being the limit and impairment hearing impairment there, but life hadn’t gotten out of them. And when life got at us, I mean, it grabbed us by the neck. And it shook us violently for years. And it took that potential, and it killed it, and it killed it by chipping away through the environment around us that shaped us.

David Smith 

It chipped away at us through depression and anxiety, it chipped away at us through physical illness and pain or some combination of the three things. And every time it took a chip away, it took a piece of that capacity that potential away. We think of health, we think of hospital or we think a doctor, that’s as natural of a thing to think of. The point of fact is that the health system has nothing to do with our health, it can patch us up when we get sick. Or I can help us maybe live a more comfortable life if we have a chronic disease. But the healthcare system is not the thing that thinks about how to promote our health.

David Smith  36:43

And that’s problem one, problem two, we think about health in terms of sprained ankles, ulcers, chest pains, diabetes, we don’t think about health as our just base ability to function as the individual we are at our core, for good or bad, we come to life with what’s imprinted on us. whatever circumstances, there’s every single one of us has a capacity, has an optimal capacity in this life. And life comes along and does what life does, and it takes it chips away at us. Life is brutal life, life can be so beautiful, but life can suck so bad and often does suck so bad. And the thing we want to do, the most natural thing we want to do as human beings is to not have things suck, we want things to be better. Now we’re very seldomly capable of making things better on our own, particularly when there is something deeply clinical, social or mental going on.

David Smith

And so over time, we’ve kind of unintentionally created this really, really, really big system. We’ve put a lot of resources into the state we’ve set okay thing when, when we get to this place, when life takes its chips at us, we kind of need you to help put us back together. We it’s not all your responsibility, but you’ve got some things that we all can your utility. Well, somewhere along the way and funding that thing, that thing has metastasized and it has grown and other human frailties like greed and ego have seeped in. And it has become an industry across the board that is completely disconnected.

David Smith  38:49

That is far more interested in its own self-aggrandizement and size and profitability. And it is motivated, it is literally incentivized to not address those health gaps, to not promote that better health. I don’t know what difference my dad’s story would have had if he had met the right doctor, or the right mental health professional or somebody in the SCD world reached out and grabbed his hand I’d like to think something but it’s 20 cents of every dollar we have. We invest in this thing. And we do not get overpaying for.

David Smith 

Next week. We’re zooming out to look at the American healthcare system from a bird’s eye view to ask the important and profound question, why does our system suck so bad?

Ian Morrison

And let’s be clear, you know, we have the highest trained humanoids and the planet. We have the fanciest buildings. We have the most cutting-edge technology. It’s unevenly distributed and inequitably distributed. And that’s the source of part of the problem. One lesson from other countries is it’s better to give everybody access to something that’s decent than it is to do total head transplants for the few.

CREDITS

The COST OF CARE is a Lemonada Original. The show is produced by Jackie Danziger and Kegan Zema. Our associate producer is Giulia Hjort. Music is by Hannis Brown. Executive producers are Stephanie Wittels Wachs, Jessica Cordova Kramer and David Smith. Help others find our show by leaving us a rating and writing a review. If you have a story to share, call us at 8334-LEMONADA or send us an email at costofcare@ lemonadamedia.com. Follow us at @LemonadaMedia across all social platforms or find me on Twitter at @CHIDavidSmith. Lastly, we want to express our appreciation for the men and women who get up every day and work in this system with a passion for improving our health. We are grateful for the work you do. We’ll be back next week.