By Michael Ashcraft —
His blog is called “Unshakable Hope” – a striking contrast to what one might expect from an ALS patient of 18 years.
By far, Bill Sweeney, 54, has already outlived expectations for a normal patient afflicted with what’s otherwise known as Lou Gehrig’s Disease, a degenerative neural disorder that progresses until patients can’t breathe – usually within 3-5 years of diagnosis.
And though his paralysis keeps him cooped up at home, he never complains on his blog. To the contrary, he chides gently those who do rant – and his buoyant optimism would make anyone ashamed about sniveling over trivial inconveniences.
“One of the greatest lessons I’ve learned from this long trial is that hope – and the joy, peace and faith that always accompany Christ-centered hope, only comes through a conscious, determined effort,” he writes on his blog through a painstakingly slow process that employs eye-tracking software to detect letter by letter what he wants to write on his computer.
“I’ve had my hope challenged many times, and I’ve become pretty good at conquering these challenges.”
In late October 1996, Bill was enjoying health and success in every area of his life. He and his wife of 11 years had two beautiful daughters. He had just been named regional sales manager and built a new home. He had been a Christian since age 21.
Then he got a diagnosis that strikes fear in the hearts of many — Amyotrophic Lateral Sclerosis. Within a year, he could no longer walk or talk. He had to resign from his job. Disability payments were held up for seven months, and he had to sell a camper, a new car and even his home to pay off medical and credit card bills.
“I certainly discovered that my health, finances and many other things I unknowingly was putting my faith in prior to this trial could be shaken,” he notes. “Hope is one of the things that cannot be shaken.”
When the ALS ice bucket challenge went viral in the summer of 2014, Bill joined the freezing fun. His wife, Mary, dumped the frigid fluid over him a moment after he smiles on the YouTube video.
“I was hoping that the ice cold water being poured over my head would cause me to jump out of my chair and run like my Australian friend, Phil,” he declares with a grin. “Unfortunately that didn’t happen.”
In one of his Facebook posts he asks, “Why are so many Christians depressed?” as he considers the suicide of a young Christian musician friend. In another post he weighs the temptation to envy. A survey indicates that 30% of Facebook users experience envy when they see their friends’ posts, and he confesses he is not immune from such feelings.
Prior to the onset of his fatal disease, he never wanted to hear about death, but ALS has forced him to confront the sobering subject, and it has transformed him. “I hope to convince others that thinking about death on a daily basis is good for us emotionally and spiritually,” he writes.
Bill started the Unshakable Hope blog in July 2012 and it now has 2,500 followers. His posts regularly rack up more than 100 comments each. Clearly his honest insights about life’s struggles resonate with people.
As a young man, Bill avoided church, because he thought Jesus was judgmental. But one night in a hotel, unable to find something interesting on television, he opened a Gideon’s Bible and began to read the story of Jesus in the Book of Matthew.
Surprised that many of his ideas about Jesus were wrong-headed, he took the Bible with him when he checked out of the hotel and continued reading. Eventually, he made his way to a small storefront church. He was very nervous and tried carefully to not use the cuss words that normally filled his everyday discourse.
But when he spilled coffee, out came the cuss words. To his surprise, no one rebuked him. They were patient and loving. He wound up accepting Jesus that day.
Since paralysis progresses, an ALS patient has to depend on caregivers for even the most basic needs. In his case, Bill’s major caregiver is “the greatest all-around Christian I know, Mary, my wife and best friend of 28 years,” he notes. “She’s the best example I know of a truly selfless servant.”
Despite severe limitations, Bill continues to be active. The eye-tracking technology on his computer makes him fully functional, though slower than most on the computer.
In addition to running his blog, Bill joined Global Media Outreach to communicate with people in closed nations of the 10-40 window as an online missionary. Connecting through sites run by Global Media Outreach, he’ll chat with people who query about Jesus or salvation in a Google search.
“In the midst of a trial, the greatest temptation we face is to hunker down and wait for the storm to pass,” Bill writes. “I don’t believe this is ever God’s will. ALS has made me a virtual prisoner of my own body for the last 18 years. It has been a very cruel warden. But I look around me and see other people fighting illness or trying to overcome addictions, depression, abuse, debt and so many other cruel masters. We must continue to hope and pray for freedom from whatever is trying to ‘hold us.’”
To see Bill’s blog, go here