ALS Warrior Says Battle is the Lord’s

'There is no way that being in an invalid state makes you invalid.'

Editor’s note: Jim Burton went to be with Jesus on May 10, at 5:15 p.m. Jim knew we would be publishing this article, and he was able to see it before he passed. We have chosen to keep this article as he saw it, though it takes place before his passing. Please pray that his loved ones will feel the comforting presence of the Lord in the coming days.

 

When Jim Burton received his ALS diagnosis in January 2013, joining about 30,000 Americans with the terminal disease, he chose to focus more on the journey than the destination.

Doctors describe amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, as an incurable malady that starves the muscular system, eventually robbing its victims of all mobility, independence and breath over a three-to-five-year period.

Burton accepted the diagnosis, but he refused to let it define him.

“I decided very early that I did not simply want to be known as ‘that guy with ALS,’” he says. “I worked to be remembered as a disciple of Christ, a father and husband with a family that I adore.”

Six-and-a-half years later, Burton is still running the race God has set before him even though he can’t move his legs or arms.

“He is still allowing God to work with him and through him to share his faith, even at this point where he can no longer do anything for himself,” says Kim, Burton’s wife of nearly 40 years.

Since his diagnosis, Burton has written five Biblically principled novels, as well as a book about living with life-threatening or terminal illnesses. For him, understanding the spiritual dimensions of catastrophic illnesses in light of eternity is not merely theoretical or conceptual—it’s personal.

In 2002, he became his wife’s primary caregiver during her successful 10-month bout with breast cancer.

“Instead of seeing a catastrophic health diagnosis as a curse, I encourage you to see it as empowerment,” Burton writes in his self-published book, “Life in the Blue Zone—God, I Didn’t See This Coming.” “The remaining time that a person with a terminal diagnosis has may be the most influential days of their life. Use that precious time wisely.

“Once we understand that God is still at work even in sickness and death, then our perspective changes,” Burton continues. “We rarely see the tapestry He’s weaving while we’re in the storm.”

Burton, who has both a master’s degree and a seminary doctorate degree and served for 25 years as an editor and program director for denominational mission agencies, is leveraging his Bible knowledge in life and death situations.

“Suddenly, the bell has rung and class has started,” Burton writes. “God still has things to teach those of us with a terminal disease. … The course would be tough with many tests. But through this school, we would learn deeper lessons about Him that we might not have learned otherwise. You cannot put a price on that education.”

Consequently, the 63-year-old former photojournalist, writer and editor for more than four decades, has embraced his illness with the same fervor of all his pursuits in life, Kim says.

From serving as bi-vocational pastor of a Korean-American congregation in an Atlanta suburb, to fostering a homeless high school student, to mentoring caregivers at the skilled nursing center where he now lives in north Georgia, Burton refuses to let ALS squelch his sense of divine purpose and meaning in life.

“God’s purpose in our lives does not stop with a catastrophic diagnosis,” Burton writes on his blog. “Even with a degenerative disease, somehow, someway, one can live out that purpose. God’s creation is not invalid no matter the state of one’s health.

“Each day in some way, I fight for validity, which is why I call myself the ALS warrior. The fight can be exhausting and discouraging. But I will continue to fight because I have no intention of becoming invalid.”

God’s sovereignty and holiness are two immutable attributes, Burton says, that helped him move quickly past asking “why me?” to seeking answers to “what now” and “how?”

“Without confidence in a holy God and His sovereignty, ALS might have felt like a roller coaster ride that left the tracks,” Burton writes in “Life in The Blue Zone”—blue representing the color of handicapped parking spaces. 

“I readily admit not understanding all that was happening, but I had a deep, abiding peace that everything would be OK. That assurance is a gift that comes with salvation.”

Furthermore, Burton writes, “… any physical challenge that we might face isn’t about the body. Instead, it’s about our relationship to a holy God, and how that relationship is established, strengthened and deepened.”

And while physician-assisted suicide bills gain traction in state legislatures across the country, Burton says this humanistic agenda is for those without hope in Jesus Christ.

“I have always believed that if I trusted God with everything from my birth throughout my life, I should also trust Him with my death,” Burton says, citing Philippians 2:20-21. “I believe that before someone can pronounce me dead, I will be walking in Heaven. And I’m looking forward to that.”

Kim, whom Jim led to faith in Christ while they were high school sweethearts, agrees.

“God has numbered the hairs on our head, and He knows the beginning and the end of our days,” she says. “We should not think we can decide those things. There is no way that being in an invalid state makes you invalid.”

The Burtons remain focused on making God’s Name great among the people they are with every day.

“It’s been a really wonderful journey, and we are continuing that journey and just trying to be on mission every day in the skilled nursing center,” Kim says. “We just have to trust in the Lord with all our heart and lean not on our own understanding.”

They do not understand all that they deal with each day, but they know the One who does.

“This is not the end,” Kim says. “We are passing through here, and it’s going to be a glorious eternity, and until then we have to learn to be a voice for Jesus, even in difficulty.”  

 

Visit www.life-bluezone.com to follow Jim Burton’s ALS journey.

Header Image: Joe Westbury