Former Megachurch Pastor Reflects on Battle With Lou Gehrig's Disease

When Ed Dobson was diagnosed with Lou Gehrig's disease, he thought his life was over.

Given only two to five more years to live, the former megachurch pastor, who fully understood the disease's degenerative symptoms, began to slowly give up on his life, which was once busy and populated, opting instead to isolate himself in bed. That is, until one day God spoke to him in a high pitched New York accent.

More specifically, God used his friend Billy, the actual one with the accent, to speak to him and wake him up from his depression.

"[Billy] said, 'Ay, you need to be a Yogi Berra Christian,'" Dobson recalled in the first of his seven-part film series produced by Flannel, the makers of Francis Chan's BASIC videos and Rob Bell's NOOMA series.

"I have no clue what he's talking about ... so I ask him what does that mean? And he says, 'It ain't over till it's over.'"

Finding profound truth in the simple statement made by his friend, who experienced the "worst of the worst" and yet still remained hopeful each day, the Michigan preacher finally began living again in spite of the disease.

"I had considered my life as over," Dobson stated. "But it wasn't. The doctors gave me two to five years. That was over 10 years ago. If I'd given up and laid down to die, I would have missed walking my daughter down the aisle, I would have missed the birth of all five grandchildren. I would say Billy's phone call was God speaking to me with a New York accent."

As a sufferer of Amyotrophic Lateral Sclerosis (ALS), a form of Motor Neuron Disease that is characterized by rapidly progressive weakness, muscle atrophy, inability to control all voluntary movement, and eventual death, the former executive of the Moral Majority had difficulty performing basic functions like brushing his teeth, putting on his clothes and eating.

"When I would be thinking about the future, about my kids, my grandkids, my wife, my job, all of which would be taken away, I would sink in the darkness," he revealed in his second short film "Consider the Birds."

"When I can't button my shirt or even do up the Velcro, it's a reminder that I'm on the downward spiral ... I'm afraid of tomorrow."

But reflecting on God's words in the Bible, particularly the verses found in the book of Hebrews, chapter 13, the Northern Ireland native stopped worrying about tomorrow and found comfort and peace.

"God has said 'Never will I leave you never will I forsake you so we say with confidence the Lord is my helper, I will not be afraid."

Those verses, which he wrote on a blue index card early on during his journey with ALS, were a reminder not only for him but also for his son Daniel, who previously served in Iraq, that God was with them.

"Giving Daniel to God and giving my disease to God is something I had to do every day and many times a day," Dobson noted. "It's not something you do and get on with your life. I was reminded of Jesus' teaching who says don't worry about tomorrow and he says look at the birds of the air, they don't sow or reap or store barns yet your father takes care of them."

The former pastor of Calvary Church, where he served for 18 years before his disease forced him to an early retirement, believes that when people are worried about the future, like he was, it is hard to find God.

But when Christians begin to live in the moment, they find that God is "right there" with them.

Though his journey with ALS has been long and filled with suffering, there have been many blessings that Dobson has discovered along the way, like newfound friendships with fellow victims of ALS.

During his last few days at Calvary, an emotional and incredibly difficult time for Dobson, he met and befriended J.J., a man who approached him at church telling him he too was diagnosed with Lou Gehrig's disease.

"J.J. and I had not met until that Sunday at Calvary and within a week, because we were pilgrims on the same journey, he became one of my best friends," Dobson revealed.

J.J. had difficulty speaking and swallowing due to his "bulbar onset" ALS, which made his speech slurred and nasal in character. Eventually, he lost all ability to speak.

Shortly after J.J. was diagnosed with the disease, he bought a Corvette and decided to drive route 66 to California with 13 of his friends. He also asked Dobson to come along with him and they took an unforgettable journey across the states.

The pastor commended J.J. for facing death with "courage, dignity and grace," something he hoped to mirror and pass along to others in similar circumstances as well.

When J.J. passed away, he left the Corvette to Dobson in his will.

"I would have gladly given the Corvette back to have J.J. still here," he said in his short film. "If J.J. were here, he would say I encouraged him a whole lot more than he encouraged me but the truth is I found great courage in knowing J.J. and yes, I feel an obligation to pass that on to as many people as possible."

"Everyone I meet is on a pilgrimage or a journey and in the providence of God, our paths crossed and I think they crossed so we can mutually encourage each other. In retrospect, the random meeting of J.J. was a reminder that God was with me even on the worst of days."

Not only has Dobson forged new relationships with his ALS "pilgrims," but he has also learned to be an encouragement to everyone he meets, investing in one-on-one relationships as opposed to his former days mentoring thousands behind his pulpit on Sundays.

"When I was at Calvary, I preached to thousands of people every week," Dobson stated. "Today, it's one-on-one primarily and my struggle is you would think that influencing thousands is more important than influencing one. But I'm gradually learning that influencing one-on-one is way more important."

Like Adam and Eve were told to take care of their own garden, Dobson finds that he too must tend to his own appointed "garden" as well by meeting with individual people and helping them on their journey.

He has restored many broken relationships with those whom he wronged or those who wronged him in the past, and is able to now see the value in relationships and the futility of pride.

"I think forgiveness is a great idea until you have someone to forgive," he admitted. "And then it's very difficult. You have to humble yourself, you have to admit you were wrong, you have to look at the person in the eyeballs and all of that is intimidating."

Despite the initial reservations, however, once he began to forgive and be forgiven, he saw that he was now much slower to judge and quicker to listen.

His unexpected disease gave him wisdom, perspective, and also reminded him of what was important in life.

"I think humans have the capacity to think they'll live forever," Dobson commented. "You ain't living forever."

Once people begin to realize that their lives are coming to an end, they begin to realize how fragile life is and prioritize their day-to-day activities.

"One day it will be over but it's not about how long I have left, it's about how I spend the time I do have."

Dobson now continues to invest in new and old relationships, and encourages everyone he meets with his story, which has been told through his books like When Facing a Life-Threatening Illness and The Year of Living Like Jesus, as well as through his ongoing short film series.

Five of seven short films have been produced so far, with the last two films about thanksgiving and healing to be released soon.

"Ed's story is ... real," Steve Carr, executive director of Flannel, told The Christian Post. "A real individual dealing with real issues."

Unscripted and put together as a response to real questions, Flannel's film series about hope featuring Dobson is a beautiful reflection of his reaction to everyday life and death issues.

The idea for the series began several years ago after Dobson had written his book about his journey with ALS. When he sent a copy to his son Daniel who was serving in the military in Iraq, he told his father he should share his stories on film as well.

Dobson and his son eventually approached Flannel to ask them if they would be interested in turning his story into a film.

"I was amazed with and personally inspired by Ed's ability not only to deal with the circumstances, but to inspire others," Carr said. He too, knew what it felt like to face mortality, having been diagnosed with Leukemia.

"To show others the hope that only can come from Jesus is inspiring, to show them while you are facing a disease such as ALS is beyond inspiring," he added. "I am humbled and honored that we are able to help Ed share his message of hope."

His organization's goal for "Ed's Story" is simple: to share hope with a world that is desperately searching for some.

"At Flannel, we serve as a catalyst for creative communicators who share in our desire to tell the way of Jesus to the world. Ed used to do that from the pulpit, now he simply demonstrates every day. The hope he has is contagious!"

To learn more about the Dobson's series or any of the other shorts produced by Flannel, click here.

The first five films of "Ed's Story" can be downloaded or purchased on DVD.

Dobson currently lives in Grand Rapids with his wife Lorna and children. He serves as a consulting editor for Leadership magazine.


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