Ed Dobson is dying.
But before he dies, the nationally famous pastor, teacher and writer wants to share a few honest-as-a-strong-cup-of-coffee words of advice about living through a crisis as big as death itself.
Read Part 1 in our 2-story series to learn more about Ed and to watch the first 10-minute video, called “It Ain’t Over,” in what eventually will be a 7-video series called “Ed’s Story.”
Today, we welcome Ed Dobson to ReadTheSpirit to talk about his final project …
INTERVIEW WITH ED DOBSON
ABOUT HIS VIDEOS
DAVID: You’re honest. So, let’s start with an honest assessment of where you are today in your journey with ALS at age 61?
ED: I was diagnosed with ALS 11 years ago this month. And I really don’t know where I am in the progression, because my doctors are telling me that I have a slow-growing form of ALS. They told me that after I had defied all the prognoses doctors gave me back in 2000—for which I am grateful. Medical professionals originally told me I had 2-to-5 years and of that 2-to-5 years, most of the time I would be disabled. But, as of today, my legs are fine. My breathing is fine. I have primarily upper-body weakness and weakness in my tongue. So, I’m hoping for another 20 years.
DAVID: You’re a man of great faith who believes strongly in prayer and the power of God. But I want to be clear with readers: You’ve surprised the doctors by how long you’ve survived and lived actively with your ALS—but you’re not claiming that prayer is healing you physically, right?
ED: Absolutely. I have yet to find anyone who was cured or healed of ALS. My objective is that—given the tough circumstances of life—how do we respond? How do we go on living?
DAVID: At ReadTheSpirit, we are rolling out a whole series of helpful materials, through this coming winter, to help the millions of Americans who are either receiving care or are caregivers right now. Give us some of your advice for well-meaning people who are paying a visit to folks like yourself.
ED: Actually, one of the films coming up in the series deals with that very subject. I say: If you’re visiting someone—show up and shut up. Don’t show up and start quoting verses from the Bible. Don’t start trying to speak for God. Just show up—and listen. And, out of that listening, you’ll figure out ways to help this person—real ways, tangible ways. But you won’t wind up really helping unless you stop talking and listen to them.
DAVID: Your first film certainly makes it clear that it is essential to work at keeping connected with the community. In your first film, you say that you didn’t want to see anyone after your diagnosis. It was Christmas and you simply wanted to stay home.
ED: I think that comes from the fact that we’re all human and circumstances can send you into a tailspin. While you’re in that tailspin, you really don’t want to see people, talk to people—you just want to be alone. I call that, for lack of a better term, wallowing in your own misery. Now, I think it is important to be free to wallow in your own misery—as long as you don’t wallow too long.
A PASTORAL NEED FAR GREATER THAN WE REALIZE
DAVID: The numbers of people giving and receiving care are staggering—the need is far greater than most people, including most church leaders, realize. About 65 million Americans are caregivers, right now, and that’s not counting the millions and millions of care receivers. You’re actually both. You receive care, but you also spend a lot of your time talking with other people going through major crises.
ED: I agree with those numbers. They’re big. Right now, almost everyone I meet is either a caregiver or needs care. Yesterday, I met with a young man who has brain cancer and is struggling mightily with that. I think we all need to be telling pastors that these needs are a lot more widespread than most people think.
DAVID: I don’t know too much about your programs at your Calvary church, but I talk with church leaders by email or in person every week—and I can tell you they’re largely unaware of the scope of this need. Most congregations think they dealt with this issue by setting up a calling ministry and adding wheelchair seating in the church. But, most people who are caregivers or care receivers don’t go to church—they’re cut off. Millions who need wheel chairs, for example, may seem disruptive in a worship service. Their condition may seem messy to people around them.
ED: Oh, absolutely! This is a big problem. At Calvary church, where I served, we had a lot of messy people in the congregation and I think it’s incumbent on whoever is the pastor of a congregation to respond appropriately. We need to affirm in many ways that the church is for struggling, hurting, depressed, messy people.
DAVID: Should pastors risk really assertively trying to welcome people who are suffering from severe medical and psychological problems? Let me play the devil’s advocate—because a church full of people in the midst of crises and disabilities like Alzheimer’s or terminal illness or autism might push some other people away.
ED: Well, we ought to risk this, because God loves everybody equally. One of the things we did at Calvary church is we had a very large ministry to differently abled people. From time to time, we would invite them to serve as ushers, to lead the music and to serve the congregation in other compelling, public ways. I think you have to make a commitment that the church is inclusive of everybody. If you’ve got people who are uncomfortable with that, then we need to help the rest of the congregation come along toward accepting these ideas.
CONVINCING THE STUBBORN AMONG US TO ACCEPT HELP
DAVID: OK, well let’s turn the perspective around. Beyond urging churches to do a better job of actively welcoming “differently abled people,” to use your prase—it’s also very difficult to convince some individuals to accept help, right? How about you? You didn’t find that too easy, did you.
ED: No. I’m Irish, so I am very stubborn. It’s taken me a long time to let my wife help me more. Early on, I would take maybe 10 minutes or more buttoning my shirt—but I was stubborn about it. I insisted on doing it myself and other things like that. Eventually, the head of the ALS clinic at the University of Michigan said to me: “Look, you can struggle with your shirt, or you can use that extra time with your wife, your kids and your grandkids. The choice is up to you.” In other words, you only have so much energy, so where do you want to spend it? Now, I let my wife do the buttons. For families who are struggling, I think the patient needs to understand that they still have so much to give to their spouse, their kids, their grandkids and to others in the community. So, that outweighs the burden they may think they are placing on others.
DAVID: Years ago, when I was a senior reporter with the Detroit Free Press, I was part of the investigative team that interviewed all the families who were clients of Dr. Jack Kevorkian. Over and over again, the main reason men and women ended their lives with Jack rested came down to their refusal to accept any more care. They didn’t want to be a burden.
ED: Nearly every patient I talk to tells me that they struggled with the amount of care from spouses and others. That’s a huge issue. We don’t want to accept help. On the other side, with Dr. Kevorkian, now that I have ALS, I refuse to sit in judgment of those who took their lives early. I do understand that struggle we go through.
DAVID: We should also point out that the natural end of life may seem more horrible than it really is. I just lost my father in law and he received great hospital care near the end. His final days were not marred by pain. He spent a lot of time visiting with family and his end was peaceful. One of the myths people fear is that there likely will be pain at the end and a whole bunch of tubes and wires. Even Pope John Paul II, before he died, refused to use some of the more extreme life-prolonging equipment.
ED: Yes, absolutely. The problem is that with our medical system today, doctors can keep you alive when you should be dead, if you let them. I’m prepared. I have a living will and all of my medical paperwork in order. I have non-resuscitation paperwork. I don’t want things that will artificially extend my body’s life.
THE BIGGEST FEAR:
ARE WE WORTH ANYTHING WHEN OUR ‘WORK’ IS DONE?
DAVID: You’ve struggled a lot with the medical and psychological and spiritual side of accepting a terminal diagnosis. But, another big question you’ve explored is vocational. What happens after our life’s work is done? You’re no longer the senior pastor of a big church. How do we find meaning in life after the major life’s work is done? That’s a big problem for many.
ED: Yes it is. I don’t have a really good answer that fits everyone, except that when your life’s main work is done, you do need to find new ways and new paths to walk in life that bring you a sense of fulfillment. For me, it’s my wife, kids, grandkids and meeting individually with so many people who are struggling. I’m assuming that what I am doing right now is just as vital as preaching to 5,000 people every week back when I was regularly working as Calvary’s pastor. Sure, there are moments when I’d love to go back to full-time pastoring. I have to be honest and say that this is an ongoing struggle for me and for everyone going through this process. But most of the time, I do feel that what I’m doing now is valuable and gives my life real meaning.
DAVID: My wife and I are part-time caregivers, like so many millions of Americans, and we have close relatives who are care receivers. I want to personally thank you for your films and especially thank you for the gritty nature of the way you’re talking in those films. No nonsense. No flowery stuff here. This is the nuts-and-bolts truth of your journey. Do you feel that the tone of your message as a pastor and a teacher has changed?
ED: I’m not sure I’ve always felt this way about how I should express myself. But, once you’re diagnosed with a terminal disease, you begin to see things differently. A good friend of mine, Cal Thomas, watched the new films and his comment was: “There are no pious platitudes. This is real, honest, gut level. This is real life.”
Now, to me, I realize that these films are not stunningly spectacular. What I’m offering is wisdom from my real life. And it may help you, too. I’m not pushing easy answers and most people I’ve met don’t gravitate toward easy answers.
DAVID: Well let me close with a question that, as a longtime veteran of magazine writing, I’ve asked quite a few times over the years. It may seem a little somber in this interview, but I think readers will want to know: What do you hope your obituary will say about you?
ED: I hope the obituary will say: “He was a good husband, father and grandfather. And, he was committed to teaching the Bible.” And, that’s all. That’s enough.
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Originally published at readthespirit.com, an online journal covering religion and cultural diversity.