Special Episode: ONE NATION, ALL BELIEFS -I Am Dying Out Loud
On this episode of ONE NATION, ALL BELIEFS (subscribe links below): Dave Warnock was caught up in the Jesus movement of the 70s and lived the bulk of his life as a Charismatic Evangelical, serving as a pastor on three different church staffs.
Following several years of internal struggle, Dave came to the conclusion in 2011 that he no longer believed in a personal God. In 2019 he was diagnosed with ALS (Lou Gehrig's disease), a progressive neurodegenerative disease with an average 3-5 year life expectancy. In early 2023, Dave, along with Bevin Jett and Sheila Hoover, founded I Am Dying Out Loud, a nonprofit organization with the mission to enhance the quality of life by advocating against the unwanted intrusion of religion in the areas of healthcare, dying, and death, and by providing “bucket list” moments for those diagnosed with ALS.
https://iamdyingoutloud.org/
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Welcome back to "Street White American Jesus." My name's Brad Onishi, and we are still here at the Summit for Religious Freedom, enjoying an incredible weekend in Washington, D.C.
And I'm joined by just like a whole entourage of people I could not wait to talk to and have gotten to see, but haven't gotten to sit down with yet.
And that is the folks from a nonprofit called I Am Dying Out Loud.
And one of those folks whose life and story is at the center of that is Dave Warnock, who's sitting next to me right now.
Another is Bevan Jett, and the third that is here with us, That is Sheila Hoover.
So let me just say to all of you, thanks for sitting down and thanks for stopping by.
Thanks for having us.
Great to be here.
Great to be here.
Let's talk about you, Dave.
Dave, you were, like me, a charismatic evangelical Christian for over three decades.
You were a pastor.
You had a crisis of faith and you re-evaluated your beliefs, your worldview, and now you are an atheist.
I got to see you down at the American Atheist Conference just a bit ago.
In 2019, you were diagnosed with ALS, which is a terminal disease with no treatment and no cure.
The average life expectancy is three to five years.
So following that diagnosis, you created just a whole host of things.
One of the things, though, is Dying Out Loud, which is now known as Dave Dying Out Loud.
And basically, you've written a memoir, you speak all over the country, and you inspire people to die with dignity, with inspiration, with grace, in ways that are really incredible.
Bevan and Sheila, you have sort of come alongside Dave, and all three of you have founded This nonprofit called I'm Dying Out Loud.
And so Sheila, you're a co-founder, you're an activist, you work for the rights of non-believers, separation of church and state, and especially, and we're going to get into this in your story, keeping religious influences and proselytizing out of end-of-life care.
And Bevan, you are also a co-founder, someone who works tirelessly for these issues and all three of you here.
So let's get into it.
Dave, so you've had a journey.
You've talked about this tirelessly, but let's talk about it again.
You're an evangelical Christian for like 35 years.
You're a pastor, all that stuff.
You leave that about 11, 12 years ago, and then you're diagnosed with ALS.
Those two things are really sort of key in your understanding of your life now and the way that you are choosing to live your life until the very end.
So, tell us about that.
Tell us how that looks like for you.
Yeah, as an evangelical Christian, as you know, you look at life as this life is just a dress rehearsal for the real life, which is eternal life, and that's what you're focused on as a believer.
Well, when I left that faith, I realized this life is the only one we have.
And I started living that way and making the most of the moments and having mottos that reflected that and really just focusing on making this life count in every way possible and grabbing the moments in life.
And then after five or six years of just living as a regular old atheist, I get diagnosed with ALS.
That happened a little over four years ago.
Well into my journey of freethought.
And so that shifted things again in ways that were impactful in the way that I talked about living and dying.
I really wasn't talking about it as much prior to the diagnosis of ALS.
The Dying Out Loud thing started, which we've now shifted to Dave Out Loud because we want to make a clear distinction between the nonprofit, which is I Am Dying Out Loud, which kind of gives us a little more, gives an individual a little more ownership of their life and their death.
And so that's kind of what my conversation has been about in the journey from Christianity to free thought and now as an atheist living with a terminal disease.
I'm a professor.
I teach classes on death and dying, and I'm teaching that actually right now.
One of the things we discuss in those classes is that American culture has a almost obsessive focus on avoiding discussing death in any way.
It's not something you talk about even with family or friends.
You might have somebody in your family who has been diagnosed with a terminal illness.
You might have someone who is very clearly at the end of their life, and yet it's taboo.
The medical system is really created to say, can we give you two more days?
Two more months, two more years.
I think one of the reasons, Dave, people just cannot help but be inspired by your story is that you refuse to do that.
That what you're saying is, yes, I'm dying.
And I'm living too.
And the two go together.
And the way that I'm living is going to be one that is out loud and that really understands that the human condition is one in which we have to seize our life on a daily basis.
Is that a difference between the way you were as a Christian and the way you are now, just in terms of that approach to your mortality?
I think so.
And what I found as I started talking out loud about this, and that's why I do love the term out loud, because it does take that taboo-ness away from it, that mystery, that hush, hush, let's don't talk about this nasty subject.
Let's talk about it, because it's something we're all going to experience.
And so as I've started talking out loud about it, It's almost as though it's given people permission to talk about it.
And people have come out of the woodworks and say, yeah, I want to talk about this.
I need to talk about it.
Not only my own, but my family members and other experiences I've had with death, loved, loved ones.
And I'm also kind of taken aback by the Christians' lack of ability to talk about death.
I remember back in my Christian days, it just wasn't something that was talked about, and as I've talked about this with Christians since then, since my diagnosis, it's something they tend to want to avoid.
And I've been puzzled by that, but as I've reflected on it, I probably shouldn't have been, because Christians don't really view death as an end.
It's like this comma.
This pause and then you just go right into eternity with Jesus or, you know, unfortunately with the devil or wherever you end up going.
But it's this idea that it's really not something that really happens to you because you're not really, this life is not that.
But once you come to terms with your mortality and realize this is indeed the only life, then you get Free to talk about it.
And as I've talked about it more and more, I've found that people are becoming more and more comfortable talking about it.
One of the things I've been thinking a lot lately and someone taught me is that when you're a Christian, you very rarely are able to feel your own pain because you're taught not to.
And you're not able to feel your own pain, much less empathize with the pain of others.
But I think not feeling your own pain, not feeling, not being in your own body means it's also very difficult to experience joy, true joy and true pleasure.
And I'm not gonna lie, Dave, I only mentioned a couple weeks ago, but when I see you, when you and I shake hands, when I've seen you speak, the tone of everything you do is one of somebody who is dying with joy.
And it's because you're living with joy.
And it's really, I don't think that people listening probably can understand the kinds of ways that that is contagious.
And it's really inspiring.
So Sheila, I want to turn to you now and I want to talk about the nonprofit that y'all are part of.
I am dying out loud, but I want to just quickly, if you would, give us a little background on why this is an issue important to you.
I think you have some personal experiences that really inform why you would be so invested in this issue.
And then I'm going to ask you to tell us how you and Dave met.
Well, they're two and the same.
The experience that I had was, I'm sorry, the experience that I had was when my mom was dying.
So within a 24-hour period of her dying, there were two nurses that were, one was proselytizing over her and speaking in tongues.
This nurse didn't know I was in the room.
And when I asked, why are you doing that?
Did she ask you to do that?
My mom was in and out.
And he said, well, what I'm doing is I am proselytizing.
He didn't say I was proselytizing.
He said what I'm doing is I am giving her the gospel as I know to be true so her soul will be saved.
And so I said, well, did she ask you to do that?
And he said, no.
And then I said, why did you do that?
And he said, well, I asked her, what do you think will happen to you after you die?
Do you believe in an afterlife?
And I said, what did she say?
Because I actually thought she probably would have said yes.
And I thought that he saw some of the religious items that we had in the room for her.
My mom was a Catholic.
I am an atheist.
She knew that.
And that never defined our relationship in any way.
But anyway, I said, what did she say?
And he said, she said no.
Probably maybe the medication or maybe he didn't understand her question, but the fact that she said no.
And then he continued to do that anyway.
So he said, I hope this isn't a problem.
I said, oh, no, it's it is a problem, but we'll we'll address it later.
And it was very frustrating because I knew my mom at some points could hear what people were saying in the room and sometimes we would say something and she would comment.
So about seven hours later, she was moved to a different room.
She was more in a hospice type of room.
And the nurse that was caring for her, she introduces herself to me and says, you are so lucky to have me.
You're so blessed to have me.
I did hospice for years.
And so Yeah, almost very, like, joyful.
And so I kind of just pushed that aside and we were, both of us were talking over my mom and I said, what can I, can you just tell me, what can I expect to happen?
Meaning, like, is she going to be cold?
Is she going to be in pain?
What can I expect to happen?
And she said to me, she is going to have the most spiritual, religious experience.
Jesus is going to come for her.
Like this, this went on.
I mean, I'm not going to get into details, but this went on and on.
And I asked her to stop a few times.
And I asked, she went out of the room, she comes back in and she says, just one more thing.
She said, it's a fun fact.
Spirits weigh five pounds.
We know this because there was a study done in Germany.
I was, the anger and frustration that I had, and this was forcing this conversation in my mother's last hours, I, the emotion was through the roof.
And I wasn't, I didn't sleep, of course, the night before.
So I was just trying to collect myself.
My other family members had come in the room and I said, I think I'm just, I'm going to go.
I'm going to come back.
I'm going to go.
I was just very frustrated.
I did leave and I always said if I had the opportunity that I could stay next to my mom while she was dying, I wanted to do that.
But I left and she died.
And so that was one of the last experiences.
So that is when I met Dave at a conference just only a year ago.
I told him my story and as genuine as Dave is, and he was very gracious with his time and it frustrated him.
And then I told it to Bevan and Bevan had lost her mother just a few months before I lost my mother.
So that made us Connect.
And we became best friends.
And then I saw them again at another conference.
And we just kept contact.
And I said, I'm going to come and visit you.
And I did.
And we were all at Dave's kitchen table.
And I was talking about this complaint that I had for the hospital.
And I did complain.
And we were like, somebody should do something about this.
This is just so not right.
And then it turned into, we should do something about this.
And that was that.
I'm just first, so thankful for you telling your story.
I know you've done that before, but you know, it's a hard story to tell.
And I can understand why it really motivated you to take action.
And the three of you together are really a pretty dynamic team.
So we have this new nonprofit.
I am dying out loud.
What's the goal?
If we said, hey, why does this exist?
I know your three emphases are to empower people, to educate people, and to give people experiences.
So let's start with empowering.
What is it that you want to empower people to do as an organization at I Am Dying Out Loud?
Well, I talked about that yesterday.
We had a breakout session and I talk about this a lot when I get the chance now at these conferences and things.
And it's evolving as we build the organization because it's really in its infancy.
But more and more, we're finding that people stuck in the situation that Sheila was in, find themselves grasping at what to do.
They're caught off guard at the religious zealotry that they are encountering.
And they're not prepared to advocate for themselves.
So we've developed an ideology, and we're creating the language for it, where we're basically, we don't want to advocate for other people, we want to give them that power to advocate for themselves.
Help them with the language.
Help them have the courage.
Encourage them that, no, you have the right and even the responsibility to speak out and push back against this.
You do not have to let people run over you in the hospital or in a medical facility and push.
their ideology and their agenda on you if it's not wanted.
At the same time, we want to say to any religious person, any person of faith of any kind, if that's what you do want, we want to advocate for that.
You have every right to have that in your hospital room.
You have every right to have that for your family member, for yourself.
We don't want to say we want no religion in the hospital.
That's not what we're saying at all.
We want a religion neutral zone, not a religion free zone.
And that's a big difference in my mind.
So that's all about empowering the individual to advocate for themselves what they want, more importantly what they don't want.
You know, as I was hearing you talk there, Dave, I was thinking about the theme for this conference and this summit, which is really church-state separation.
And I think there could be somebody who's thinking, OK, this is a great organization.
I'm dying out loud.
You know, you want to provide the kind of empowerment that you just talked about.
What does that have to do with church-state separation?
But it seems pretty clear, and I'm wondering if Sheila or Dave, you want to talk about this, that church-state separation means that you are free to die as you want, meaning that you won't have the incursion of Religious zealotry, as you did, Sheila, when you're going through the process of yourself or family members last days.
And so is there a connection?
Does that connection seem right to you in your mind about, you know, church state separation is really something that means a lot when we're talking about this kind of work that's happening at I Am Dying Out Loud?
It is.
I mean, I also wanted to make a note about when we talk about the church state separation, some of the laws that are around Supporting now, even with the courts now, more encouraging people's their religious conscience, so to speak.
So just even in health care, whether not even the fact that it's a Catholic hospital, but that if You are a person that may be gay or trans or need to have a DNC after you've had a miscarriage and well now I'm sorry this is everything about this other person is against what my religion teaches and therefore they don't have to serve you.
They don't have to take care of you, and that's causing harm.
And so, but we also will see that in any hospital now, not necessarily even Catholic-run hospitals.
And then it's a problem, especially if they are receiving taxpayers' money.
They have Medicaid, Medicare.
I mean, I don't know if that answers your question, but I mean, it is kind of tied in that way.
Yeah, and I think, you may have heard of this term, Christian nationalism.
I don't know, maybe a new thing for you, Brad?
Yeah, tell me more.
But yeah, I've probably should write a book about it, nobody else is.
But we see the emboldenedness of these people passing more and more egregious laws that, like Sheila said, I have this ideology behind them that says, I have these deeply held religious beliefs as a doctor, as a nurse, as whatever, and I can choose who I treat and who I don't.
That is discrimination at the highest level.
And now we have this weaponized court that they think is going to back them up on this.
So we've really got this battle looming, as your book says, and it feels like we're right in the middle of it.
This organization that we're doing, it feels like we want to take that battle or that conversation, hopefully it can be a conversation before it's a battle, but to the healthcare world, to the healthcare industry, to the medical facilities, and say that no, no, no, people should be able to advocate For their own life, to live on their own terms and to die on their own terms, and this death with dignity stuff that we need to talk about, too.
That's the other element of this that is being imposed upon by the Christian nationalist ideology in this country.
Yeah, as y'all are talking, what I'm thinking of is, you know, we're talking about your organization, I'm Dying Out Loud, which is really focused on end-of-life issues and values.
But everything that y'all are saying is that the way we die or the way we allow people to die Is a direct reflection of how we allow people to live.
Yeah.
The rights you have, the care you receive, the respect you have as a person.
I want to go to one of the other values and emphases of the organization that's giving people experiences.
And I've heard y'all talk about this before and I think it's really amazing.
Dave, I know you had an amazing experience in Hawaii.
My family's from Hawaii with an octopus, which is just like an amazing story.
And if y'all don't know the story, you got to go to the website, you got to hear Dave speak about it.
You want to give folks experiences at the end of their life that are incredibly meaningful.
Can you talk about that?
Yeah.
If you're OK, I'd like Bevan to share her perspective on that, because to me, the experience for what we're doing is providing or granting gifting experiences to people diagnosed with ALS who are, by definition, their lifespan is going to be shortened dramatically.
And so we want to give them these moments while they still have the ability to enjoy them.
But it's almost more for the person with the person with ALS.
Like in other words, that moment's going to be more meaningful for Bevan than it will be for me when you look at the big scope of things.
So talk about that for a minute, how impactful that was to you, Bevan.
Well, one of the things when a family member gets diagnosed with ALS is that everything starts to focus on the upcoming medical needs and it's going to cost money and people are just in sheer state of panic.
How are we going to do this?
How are we going to take care of this person?
How long are they going to live?
The average life expectancy is three to five years.
Those last couple years, even if you make it the five years, are pretty bad.
You're usually bedridden.
And so when Dave got diagnosed four years ago, I never in my wildest dreams thought we'd be sitting here four years later.
Now Dave has been impacted.
He has very limited use of his hands and arms and has to use a wheelchair for walking long distances.
Still, that's dramatically better than most people.
And the thing is that it's hard to say, oh, live your best life while you're dying if you're just encumbered by all of this medical expenses and worrying about the future.
And so where we could be raising money for medical equipment, there are a lot of great organizations out there already doing that.
What we want to do is come in and say, What would you like to do?
How would you like to live your life if you could do something?
What's a bucket list adventure you would like to do?
And let's provide that.
And some people might say, well, gosh, this person's dying.
You know, I spent a bunch of money on somebody that's going to be gone in a couple of years.
And what I'd really love to attest to that, and I'm actually going to throw Dave a little bit under the bus.
You talk about Dave living with joy.
Wow.
It gets hard sometimes.
And Dave doesn't have a lot of joy.
And when we went out to Hawaii, I don't know, maybe because it was a hard trip.
It takes a long time to get out there.
We're in North Carolina.
We got out there and we were having to use a wheelchair because everywhere we went it was kind of a long distance to go and Dave was just sort of kind of frustrated and he was in a bad mood and there was a new medication, the trial that we were doing, that tastes terrible.
Dave didn't want to take it and I'm like, For everything I'm doing for you, can you please take this medication so you can see how things are quickly going downhill?
And then we went on this adventure that Team Gleason, they're a great organization, had provided for Dave to go scuba diving.
And that may sound odd when you don't have control of your hands, but they have adaptive scuba diving there.
And we went scuba diving and they found an octopus.
And from what I understand, those weren't an everyday thing to find.
And they brought it over to us and they let Dave play with it for a really long time.
It was really amazing.
And I thought it was really neat.
I mean, it was a neat experience, but what blew me away was after that experience, Dave was just like on this high.
And when we came back home and it was nighttime and it was time to take that medication again, I mean, we were really almost in arguments about it.
And I'd gotten to the point where, you know, I just wasn't going to force it.
And Dave's like, so are you going to make that medication for me?
And I was like, what?
And although you've complained about the flavor, you've never said, I don't want to take it since then.
Because it kind of gave him a, I want to keep living.
I want to keep trying everything.
And this octopus kind of brought you back to life.
So, and so if you can do that for somebody that's facing such a horrible diagnosis and give them some kind of extra reason to want to live, to want to keep fighting and to live with their family.
And then what Dave is referring to as far as, yes, ALS is 100% fatal.
Yes, eventually we lose everyone to ALS, but the family members go on.
And it is a memory you have.
It is something you treasure.
And when the dark clouds are so huge over you, it's a really bright moment.
And so that's why we want to do this.
Yeah, just an amazing story.
It gets me every time.
We're just about out of time, and I'm the interviewer, and I'm not supposed to talk a lot, but too bad.
Because there's something I want to tell you all, and that is, I was an evangelical Christian too.
And I think that, for me, there was this overriding sense in that worldview that said death is cured, and therefore, right, to be a human being is to never feel sorrow.
That's the thing that we've resolved with our faith.
And the idea that you would love someone was always about permanence, right?
That you could never separate love and permanence.
And that's why you could never love the world, Dave.
Come on, this is like Evangelical Christianity 101.
We don't love the world.
And what I've learned since leaving all that is something that you have just reminded me of in the short time that I've known y'all is that love is not permanence and that it doesn't have to be.
And in fact, to be human being is not to solve our condition, that there's no resolution to the human condition.
Even, you know, one that includes ALS or not.
There's no resolution to the condition of being human.
We are mortal beings.
And so to love is always to feel sorrow.
Love is sorrow.
Because I know all that I love will end.
And some people are listening and thinking, well, how can that be love?
And the response would be is because love and sorrow are the, sorrow is the condition of joy, that you cannot experience what you did in Hawaii or any of the other steps along the journey and the sense of an overwhelming wonder at existing without the condition of mortality.
And so for me, love is sorrow, but it's sorrow joyous.
And that's a paradox to the Christian because they're like, you can't have Joy or sorrow, those two don't go together.
And my response is, look man, we came into this world and none of us chose it.
And you just got here and now all of a sudden you're like naked and crying and you're in this world.
You don't know where you came from.
That's embarrassing.
It's embarrassing to be a human being that way.
I mean, if you show up somewhere naked crying, you don't know where you came from, that's probably a bad night you had.
You know what I mean?
We all got to leave the world even though we may not want to.
That's embarrassing too.
So to be human is to be this embarrassing in-between creature who didn't choose their birth and can't avoid their death.
And yet to live as a human being can be a curse because you think well that's just that's just like a lot.
But it can also be This overwhelmingly wondrous condition.
And if you're going to accept the wonder, you have to accept the sorrow.
And when I see y'all, you're the embodiment of that.
So thank you.
All right, we got to stop because I'm going to start crying.
Here we go.
Sheila, tell everybody where to find your organization.
You can find us at IamDyingOutLoud.org.
And you can get more information there.
It is a website that is still in its beta stages.
Yeah, but it is in progress.
Well, thank you for stopping by.
Thank you for all the work you're doing.
I hope we get to talk again soon.
And just couldn't be more thankful for all your work.
