December6 , 2022

    The Unshakable Hope of Bill Sweeney: Living with ALS

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    Trapped in the dark prison of his own bedroom, unable to move, speak, eat, drink or breathe on his own, Bill Sweeney is reflecting the brilliant light and hope of Jesus Christ all over the world through the slight movements of his eyeballs and a computer.

    “But if giving up everything I’ve learned about God and His goodness and grace over the past 20 years was the price for that healing, I would not even consider it.” Bill Sweeney

    Bill was given 2-5 years to live.

    The diagnosis: Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease or classical motor neuron disease.

    Remember the Ice Bucket Challenge that went viral a few years ago? It was an effort to raise money and awareness of the fatal disease by videoing yourself being doused with cold water.

    Aside from the fact that Bill has this incurable disease, there are a few more unusual things about his story.

    One: he was diagnosed over 20 years ago. And two: his unshakable hope. We will get to that later when I interview Bill, but for now, let’s go back…

    Bill’s family before diagnosed

    It was late October 1996. Bill had just turned 36 years old. Life had been good to him and his wife, Mary of 11 years. Their daughters, ages 7 and 4 were healthy and happy. They built their dream home after Bill had been promoted at work.

    “Every aspect of our life was working well. We were living our small part to the American Dream,” said Bill.

    And then it happened.

    Bill, who had always enjoyed great health, knew something wasn’t quite right when he was out of breath just carrying his daughters upstairs to bed. Then there was the cramping in the hands. At first, he thought he was just out of shape and joined the gym. But his symptoms worsened.

    Because Bill no longer has the use of his hands or voice, he uses a high-tech retinal recognition device to communicate. It could take him up to 45 minutes to answer one of my questions below.

    About ALS

    ALS is a fatal progressive disease. It affects nerves in your brain and spinal cord that control your muscles. Both the upper motor nerves and lower nerves degenerate or die, ceasing to send messages to the muscles. As your muscles get weaker, it gets harder for you to walk, talk, eat, and breathe. Unable to function, the muscles gradually weaken and waste away. The loss of breathing is what causes most people to die within 2-5 years of their diagnosis.

    But this is not the case for Bill Sweeney. He and Mary have been married for almost 32 years and now have two grandchildren and one more on the way.

    Bill and Mary’s Grandchildren

    Bill went through the usual stages of grief after his diagnosis with ALS. As his body began to weaken, he struggled with not being able to perform simple tasks like buttoning his shirt. Even more than losing the ability to walk, or even the need to quit working—he was most frustrated with his loss of speech. He also hated the fact that his wife Mary would have to take care of him.

    Mary has been fortunate to have a job working from home for over 28 years with a medical transcription company.

    After hearing Bill and Mary’s story on Moody Radio’s Chris Fabry Live, I contacted Bill and he agreed to allow me the privilege of writing this article.

    Because Bill no longer has the use of his hands or voice, he uses a high-tech retinal recognition device to communicate. It could take him up to 45 minutes to answer one of my questions below.

    Unshakable Hope

    “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

    Describe a typical day.

    A typical day feels like Groundhog’s Day (the movie). Mary gets up and checks on me first before doing her devotions and exercise. After getting me situated in our bedroom (my “cave”) and set up on my computer, she goes into her office to work. I cannot speak or move. I use an eye-tracking computer to type and “speak”. Light affects the camera tracking my eye movements, so I keep it dark in my bedroom, where I spend 95% of my time.

    From the “cave”, I read the Bible, but some days, I’ll listen to the audio Bible. Fatigue is a big problem. When I was first diagnosed, I often would study and read for ten hours per day. The last few years, I find myself relying more and more on audio Bible and books.

    After I finish my devotions, I usually log onto Global Media Outreach site. I reply to emails, read blog posts and reply to comments from my blog. I would like to start spending more time on writing.

    About Bill’s ministry with Global Media Outreach

    For 7 years, Bill has volunteered as an online missionary with GMO, a non-denominational online ministry that spreads the gospel globally. People all over the world are given the opportunity to connect with local churches, get Bibles, free online materials and much more. GMO ev