(Editor’s Note: Below is the transcript from the second part of a Zoom conversation I had with Dave Warnock on December 17, 2020. The first part was posted last week. – KTB)
Kevin: Is your disease progressing?
Dave: When I was first diagnosed almost two years ago – you know, they tell you it’s 3-5 years from the onset of systems – I had already been experiencing symptoms for year, so I thought I might have a year or two left at that time. My initial reaction was that I was going to live as much life as I can. My attitude was to sell or give everything away, travel, live life, and when it gets too bad pull the plug. Since then, I’ve learned there many versions of ALS and it doesn’t affect anyone the same. Some are slow, some are fast. I’ve gotten to know people who were diagnosed and dead within six months. It’s always brutal at the end, which is why I got interested in FEN because it gives me the option to not go through that.
K: Is it always fatal?
D: Always. No treatment and no cure. It’s just a question of how long. I have what they call limb onset. There’s also bulbar onset, which starts in the mouth area and that goes quicker because what kills you is your diaphragm doesn’t work and then you can’t breathe. Mine has been relatively contained in my arms for over two years, which is called flail arm syndrome, and I now know that I may have more like 10 years. The progression is very, very slow in comparison to many others. I’m still able to walk, drive and eat. I am having more and more difficulty doing basic things, like dressing and eating and I’ve had to adjust to that. My decision will come down to – and this has always has been my mindset – when I’m unhappy with the quality of life how long will I let myself go? When I can’t use my arms anymore and someone has to do everything for me, when I have to be propped up in a chair, when I have to be dressed, fed, bathed, and so on – all the things we never think about – how long am I willing to live that way? That’s the big question, and I don’t have the answer. I’m probably looking at one more good year where I can travel and do stuff. I may need to make a hard decision at this time next year.
K: How do you respond to the fact that combat military vets come back with both arms gone and they’re able to live so-called productive and happy lives inspiring others. Why can’t you do that without your arms?
D: I can, if I want to. But I can also say I don’t want to. And that’s the point. Also, the difference between them and me is that they’re not going to die from their injuries. I’m going to die from this. I know what’s coming. If I knew that I would only lose my arms, then yeah, I might stick around and do YouTube shows and continue to reach people from around the world. It’s been very gratifying and has given me a great deal of purpose for this part of my life, more than I ever could have imagined. It’s been incredible. But the difference between that soldier and me is the soldier probably won’t die because he lost his limbs. When I lose my arms, I know there are other losses coming. It’s just a matter of how soon that’s going to happen.
K: Generally, FEN’s method requires a certain amount of strength and dexterity in your hands and arms.
D: My Death Squad (that’s what I call the friends who want to be with me to the end) and I have already talked about that. We’re going to re-engineer the tank to use a valve I can control with my foot. Putting the hood over my head is another challenge, but I’m confident that my Death Squad and I will work something out.
K: Now that you have a reprieve of sorts – possibly up to 10 years instead of two, I’m assuming you’re not spending your money quite as fast as you might otherwise, what other options has your new diagnosis given you?
D: It does give me some options. It depends on how rapid my decline is and what that looks like. There are some treatments that are in the works and trials going on. There may be a treatment that could significantly stop symptoms and buy me some time. It’s always in the back of my mind that I might do something to buy time until new treatment comes along that might even stop the decline. None of the treatments we’ve seen yet have any efficacy in terms of reversing the loss. If and when a new treatment does come along that prevents further decline, I’ll have to decide if I’m content to live the rest of my life with the loss to that point. Right now, I would be happy to live as long as possible with my current limitations. But if it gets much worse, I’ll have to decide how content I am to live with a reduced quality of life. I still want to travel. I still want to do the Dying Out Loud work. I’m working on two books. I can’t type any more, but I do voice-to-text, which a co-writer then puts in usable form. I can still do YouTube videos and I have some equipment on order for that. I’m content to keep doing this for a good while. But the reality may be that after a year or two, the struggle may be too much. When you struggle every day just to get dressed and feed yourself, it gets old. I’m 65 years old. If I were 40 and had a young family it might be different. I do have a wonderful woman in my life and I want to be with her as long as I can, but at some point the cost is just too much. I’m always saying, when the losses become too much greater than the gains, it may be time to shut the door. I never wanted to be an 85-year-old man with all kinds of illnesses and aches and pains. At what point do we say this is enough? What’s a good long life? 65? 70? 75? I’ve always believed that the number of days is less important than the quality of days, and I will continue assessing that as time goes on.
K: What have you learned about yourself in this journey that has surprised you?
D: I don’t know if it’s been the most surprising about myself, but very quickly I embraced this for what it is. I didn’t go into a tailspin emotionally. I quickly made decisions to retire, move in with friends, sell and give things away, and simplify my life. I didn’t have a pity party or get really angry or really depressed. I just said okay let’s go, how do we want to do this? The Dying Out Loud project sort of organically came into being and gave me an outlet and something to focus on and give myself to. I realized that talking about this has had quite an impact on people. I dare say I’ve had more of a positive impact on people in the last year and a half than in all my years as a Christian and as a minister because it’s helped people in real ways. Messages I have received have been overwhelming, about how me talking about life and death and the human experience and the way I address it point blank has helped people confront their fear of dying and in many cases to live their lives more fully than ever before. That was a surprising development that I never saw coming and I’m very thankful for it.
K: Do you have regrets about the time you spent in ministry? Did you ever think it was a complete waste of your time?
D: Oh yeah, lots. I have many friends that I made through The Clergy Project, and we share the same refrain of wondering how we ever get sucked up in that. But regret is a very costly emotion. I have regrets but I’ve learned not to dwell there very much. In the last year and half, I came across this quote from Maya Angelou: “Do the best you can do until you know better, and then when you know better, do better.” It really explains how I view my former life as a Christian minister, and my current life as an atheist and even life as a terminally ill person. I was doing the best I could. When I knew better, I tried to do better. It’s really a simple way to live, and it’s been very gratifying to help people navigate their decision to leave Christianity and also to deal with their cancer or other illness.
K: What would you say to 25-year-old Dave if you could go back in time?
D: Don’t accept answers that seem too easy. Nothing is black and white. It’s okay to say you don’t know. What I gravitated toward in evangelicalism was the certainty of it. This is the book, these are the rules, live this way and you’ll be okay. Life doesn’t work that way. I didn’t know better, and I got sucked up into it and believed it.
K: You did that for over 30 years – were there doubts along the way?
D: As I’m writing my book, I’m re-addressing those times in my life. I think everyone has them, but as a fundamentalist Christian you learn to shove it down and just accept. Even now when I talk to Christians, they say there are things we just won’t understand until we get to heaven. That’s the default answer when you don’t have answers. I left Christianity because I got tired of making excuses for God’s poor behavior. That’s just what we had to do. When things didn’t make sense, God always got a pass because he’s perfect and he created us and we just don’t understand yet or we don’t have enough faith.
K: Do you have family members still trying to reconvert you?
D: Early on in my deconversion process, my brother in Texas made a couple of runs at me. It didn’t go well. My Mom is a sweet little Jesus lover, also in Texas. A few years ago she would make comments every now and then, asking me to read this book or watch that movie. She would say she’s praying so much for me or worried so much about me. But they’ve pretty much let all that go. They’ve learned it’s not just a phase I’m going through. It’s not that I’m mad at God. They don’t understand it and they don’t like but I think they’ve come to terms with it.
K: You said you’ve spoken at several at Unitarian churches. I’ve met many some Unitarians who consider themselves Christians. Have you had any pushback during your talks?
D: Sometimes I have gotten a little pushback from church board members who say, “I’ve seen his talks. He bashes Christianity and I consider myself a Christian.” I had a conversation with a lady in Pennsylvania and tried to make it clear that I don’t have a problem with spirituality or religion per se. Personally, I think we’d be better off in a world without religion, but you do you. I’m not trying to tell you what to do. What I’m opposed to is anybody telling me or anyone else what to do. That’s why I try to differentiate between progressive Christianity and evangelicalism. I had a conversation with a pastor friend in Nashville back in 2016. We were talking about the deconstruction of my faith. They are a progressive church and I went there occasionally. I’m open minded about that sort of thing, it’s just not something I have a personal need for.
K: In his book, “Proof of Heaven,” neurosurgeon Eben Alexander wrote about his own near-death experience. Prior to lapsing into a coma for seven days, he was unable to reconcile belief in an afterlife with his knowledge of neuroscience. While in a coma, he had a mystical experience that he couldn’t explain away, because the EEG or whatever he was attached to during showed that the part of his brain that is usually responsible for such experiences was not working. I just wish he hadn’t used the word “heaven” in his book. Many Christians claim that if there’s a heaven, then there must be a hell, which I don’t believe in. And I prefer terms such as universal consciousness to heaven, but my own experiences of talking with many patients who had near-death experiences tell me there is something beyond this physical life.
D: The problem I have with belief in any kind of afterlife is that, in my opinion, such a belief minimizes this life by default. If we think this life is just a pre-season football game or a dress rehearsal for the real play, then it’s not going to mean as much. We’re just going through the motions and practicing for the real show. I believe this is what we have and we need to suck the marrow out of the bones of life and get everything we can out of it because there’s not a chapter two or next dance. Otherwise, I think we tend to look at this life with a little less value, and I find that to be very tragic.
K: It looks like we’re out of time. Do you have any final thoughts to add?
D: No, I think we covered everything. I appreciate FEN’s support and the work you do.
I appreciate this discussion. I had symptoms of pain and paralysis in my feet when I used to stay in the supermarket to shop for over 90 minutes. That was in 2010. Then two doctors maimed my feet in 2014/5. I’ve been in pain and impairment in my feet and legs since then. Now my arms are also experiencing that problem. I turned to Christ after my damage and am age 85 now, not as young as Mr. Warnock. I have some good days and some very bad days. I am allergic to all pain medications tried so far. In spite of that, one pain clinic did give me acetaminophen/codeine pills to use in bad pain episodes. A hospice admissions director calls me once per month to assess when I get hospice appropriate for them to come in.
One neurologist did tell me that the problems from 2010 onward may have been due to ALS but the diagnosis involving biopsies of nerve tissue and muscle tissue plus spinal taps would be very invasive and painful. Even if diagnosed, there is no cure. It would just slap a label on my symptoms. Thus, I was forced to live with the agony and learned to get along with the pain and impairment.
Dave, I sincerely appreciate your courage and pro-active end-of-life stance. I also agree with your disdain for fundamentalism while still maintaining a live-and-let-live attitude towards those of a more spiritual persuasion. I fall into the latter group, not throwing the baby out with the wash, though there is sufficient scientific proof to justify doing that. But increasingly there is also scientific proof not to do that. In short, as Darwin declared this a Survival of the Fittest World, I think it might also be a Survival of the Moral into the Next (assuming there is a Next). If there is, that would justify your current intent to do good now until you know to do better. That life-attitude is anathema to some amongst us, such as fundamentalist preachers who “know better” but keep on doing bad. Neither you nor I desire to rub shoulders with them in the Next, so why should we have to? I don’t think we shall. As those who are physically or mentally unfit do not continue on Earth, why should the morally unfit on Earth be worthy of continuing into the Next? I do not think they will, nor do I think they will suffer. I think they will just cease to exist. Could that help modify somewhat your Eat, Drink, Do Good, and Be Merry for Tomorrow We Die attitude into an Eat, Drink, Do Good, and Be Merry for Tomorrow May Be Better expectation? Please let me know because, at age 80 and with several age-related infirmities, you and I are in a dead (ironic choice of word) heat to be the first to get that answer.
I was happy to see the reference to Eben Alexander. As someone who has had many spiritually transformative experiences (STEs), I’m not paying less attention to this life, but more. Attention to what am I here for and what am I supposed to accomplish, which is, I found out, for me the expression of love in every way possible. Not the accumulation of wealth and power. Many with near-death experiences or STEs find themselves gifted with new talents to be developed. That said, I do believe everyone is exactly where they are supposed to be and doing what they need to do, including the fundamentalist Christians, the atheists, and everyone else in the circle of life.