The dark silhouettes of trees are just visible in the moonlight beyond Ed Dobson’s basement windows. Inside, a rerun of Duck Dynasty is on the television. One of the show’s long-bearded men argues with his wife about the chickens he brought into their upscale neighborhood, the leaves he wants to burn in the yard. Dobson, in a much tidier black-and-gray beard, laughs from the gut.
It wasn’t long ago that his face might have appeared on the TV set before him. Then a pastor in his prime shepherding a 5,000-member congregation, he gave sermons to Calvary Church that were broadcast to the surrounding communities. He wrote books and articles. He led 20 trips to Israel. He was an avid hiker, runner, golfer, and soccer player. But that was all before he found out he was dying.
At a commercial break, he rises from the chair, using the motion of his legs to help him stand, and moves to the sideboard, where his drink is sweating. He leans over and feels for the straw with his lips, his thin arms hanging at his sides. In the last few months, they’ve weakened considerably. He’s using them less and less.
Dobson suffers from a neurodegenerative disorder called amyotrophic lateral sclerosis, or ALS. Over time, the disease attacks neurons that control voluntary muscles. As nerve cells degenerate, muscles atrophy. There’s no known cure. Eventually, the body just gives out.
It all started around his 50th birthday. He was on a backpacking trip with youth from the church—one he made every year—but this time was different. He was finding the trek more tiring than usual. Tasks he had once done with ease were difficult. He had also noticed a twitch in one eye that soon spread to other parts of his body.
On returning to Grand Rapids, he sought the advice of a neurologist, who recommended he undergo tests at the University of Michigan. Weeks later, his fears were confirmed. Dobson received a diagnosis of probable ALS, which predicted he would live for another two to five years. “I felt like I was sinking into the darkness . . . I felt like my life was over,” he wrote in his book Seeing through the Fog. “I felt like I had been buried alive.” That was 13 years ago.
The Dobson home, decorated in rosy taupes and slate gray, is serene. And when the TV goes off, the basement is starkly quiet. Their condo is part of the generously spaced Holland Home property—a mixed housing development and healthcare system for people in their final years. At 63, Ed and his wife Lorna are younger than their neighbors, but the progressive nature of his disease necessitated an early move-in. It’s the home where he plans to die.
Dobson moves and speaks with a measured slowness—largely because of the effects ALS has wrought on his body, but also because of what being ill has taught him. As the disease advances, he finds the physical demands of speaking increasingly difficult. The result is that he’s much more contemplative now, slower to offer his opinion, and more prone to asking questions than to giving answers.
“I think before I got diagnosed I was tempted to speak for God,” he says. “Now I don’t speak for Him, so I have fewer answers. Out of my own struggle, I’ve discovered that people don’t need a lot of answers. They simply need you to be there to listen, to cry with them, and sympathize.”
He’s also focused on being thankful. It’s a constant theme when talking about life and how he relates to God. “I don’t regret I got the disease,” he says. “When you have ALS, either you get angry and bitter or you become grateful and rely on the Lord. To me, those are the only choices you have. Through reading Scripture, praying, and listening to others, I find hope. I wake up every day grateful that I have another day.”
The morning sun streams in, and what was hidden in darkness can now be seen in plain sight. Just beyond the threshold of the room where the TV sits, there’s a sunroom with a bistro table and floral-print chairs. Lorna tells me that they regularly sit there and watch deer sip from the brook. Ed’s fulltime caregiver and wife of 41 years, she rises first each morning to prepare for the day ahead. It starts with breakfast: she makes his meals—mostly soups and special nutrient- and calorie-rich drinks to spare him the now difficult chore of chewing.
When Ed wakes, he calls Lorna for help getting ready. And after a few minutes, they emerge from the bedroom. He stands at the counter—his preferred posture for most meals—and Lorna helps him raise the cup to his lips. She lets him hold it between his hands and wrists and steps back. His arms tremble. She stands by ready to help, knowing that he’d like to do what he can, while he can still do it. And so she hesitates. He drinks long, and when he’s had enough, lets his hands drop to the countertop with a thud.
After breakfast, Ed and I talk in the basement for a while. “Before the disease, I was into the resurrected Jesus,” he says. “Now I’m into the suffering Jesus, and I find that very helpful. Even when my body doesn’t work, I remember the Jesus who created the universe limited Himself to the human body. I find encouragement in Good Friday. I want to get to Sunday, but I’m more focused on the suffering.” Through his pain, he’s learning how to meet others in their own.
Not long after diagnosis, a local chapter of the ALS Association asked if he would assist with visiting and encouraging the homebound. On one visit, the patient’s husband stood in the doorway and politely explained that his wife didn’t want to see anybody. But feeling a new sense of urgency, he walked past the man into the woman’s bedroom. Dobson spoke to her, asking questions, and she remained silent. He returned for several more visits, and each time was the same. She would roll over and face the wall, never saying a word.
“I always prayed with her, even though she didn’t give a rip about God,” he says. He wrote a prayer to Christ on a notecard, and her husband taped it to the wall where she would always see it. “The weekend she died, she asked her husband to carry her into the living room. She wanted to watch me on TV. After she had listened, she told her husband to tell me she prayed the prayer—that she was ready to die. And the next day she did.”
Today Dobson’s ministry continues in these types of encounters, though some folks are more receptive than others. Where he once spoke to crowds of thousands, today he gives his energy to meeting with people face to face. Most of these individuals have ALS; some don’t. But Dobson has come to appreciate the power of ministering one on one—what he now feels is the most effective way to help others in their journey with God: to show up and listen.
“Those of us who have met with Ed over the years have seen that his ministry has multiplied exponentially through his disease,” said Mart DeHaan, a longtime member of Calvary and in recent years a close friend. “Ed had a large influence and a very large ministry. But I think his ability to speak through weaknesses has taken him far beyond what he had.”
By all accounts, that seems to be true. Ed stays busy, and he and Lorna both are involved with encouraging families affected by the disease. Yet the last 13 years have been hard on her, though she hasn’t wanted to burden Ed with how the illness affects her. It’s painful to see him growing weaker. So much of their life together has been talking, sharing in conversation. His becoming less communicative is deeply felt, a mutual loss—one of many on a list that will continue growing.
Later, back in the kitchen, Lorna talks as she measures out powders and liquids for Ed’s afternoon drink. She puts a plate of scrambled eggs in front of him and flips on the 12 o’clock news. The anchor tells the story about an elderly man who slipped on his icy driveway and couldn’t get up. The neighbor’s dog somehow sensed the need and went to him, barking, refusing to leave the man’s side until his owner came to help. The man’s life was saved just in time to celebrate his 69th wedding anniversary. Ed and Lorna watch in silence as the segment goes to commercial.
The week after he was diagnosed, Ed preached on the passage from Mark 6 about the disciples struggling against a storm, despairing that their lives may be lost. At the time, Ed imagined himself in the story, standing in the boat alone—staring into the winds and tossing waves of ALS. He looked out into the fog and could see Jesus walking toward him. Today, he sees Jesus in the boat with him, giving inner peace even when the outer is lacking.
“Most of my life in ministry, I really didn’t need Him, other than when I would preach and the Spirit would convict people. Most of what I did, I did on my own. I wish I depended more on Him in ministry, but what’s important is today. Now I really need Him, and He shows up.”
Photography by Joel Swierenga
Ed Dobson died Dec. 26, 2015. As the Facebook page that chronicled his battle with ALS states, “Ed Dobson is now healed and with his Lord.”