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The Unshakable Hope of Bill Sweeney: Living with ALS

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 even reaches nations who are otherwise closed to missionaries.

“They are hungry and humble people. Some could lose their lives, or be shunned by their families for following Christ,” said Bill.

Bill’s wife, Mary says, “Bill is honored to give hope and encouragement. He wants to be used. Technology can be used for evil, but in Bill’s case, it’s used for God.”

For more information on Global Media Outreach go to www.globalmediaoutreach.com

How has your view of God changed since the diagnosis? (question from Moody Radio interview)

My view of God has changed so much. He’s so much better than I imagined Him to be. I haven’t yet been given the physical miracle I sought. But He’s blessed us with miracle after miracle. His grace has truly been sufficient for us. I would still love to jump up out of this wheelchair, rip off the mask, and have my feeding tube removed.

“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.”

Describe your relationship with God.

My relationship with God is deeply personal. Mary and I live in the same home, but she works in her office all day and I’m alone in “my cave.” I am not able to speak, which rules out picking up the phone to call a friend, so I was almost forced to learn to silently commune with God. I know it sounds New Age, but it’s true—God hears our thoughts.

Ultimately, I don’t believe it was logic that helped them find Christ—it was unconditional love, patience, and sincerity of someone in their life.

Many people, including Christians, struggle with having faith and using intellect and logic. How have you reconciled faith and logic?

Yes, I was one of these people. I read testimonies from logical thinkers like C.S. Lewis and Lee Strobel, people that seemed to be on a quest to figure out faith as if they were trying to solve a math problem. Ultimately, I don’t believe it was logic that helped them find Christ—it was unconditional love, patience, and sincerity of someone in their life. Unfortunately, this process works in reverse also; so many people’s hypocrisy has pushed others away from Christ. That said, anyone who has read “Mere Christianity” (C.S. Lewis) and “The Case for Christ” (Lee Strobel), will discover that you don’t have to check your logic at the door when you make a commitment to follow Christ.

The hope you describe is what our culture and world crave and yet doesn’t know how to receive. How did you find your way to God’s hope and such a personal relationship with Him?

Wow, this is the million-dollar question. To be honest, ALS backed me so deep in a corner that hoping in Christ seemed like the only option. The doctors gave me no hope. They told me that ALS is 100% terminal and should essentially go home and get my house in order.

I believe so strongly that God still heals, and I believe that we should always pray for healing – I am still praying for healing for myself and many others that have been given a death sentence. I’ve seen and experienced miracles; healing, financial breakthroughs, marriages restored, and so many incredible miracles. In a real sense, it seems as if God won’t let me give up on believing for miracles.

Through my blog and through Global Media Outreach, I try so hard to pass on the message of hope in Christ.

If there is a formula for increasing hope in Christ, I would say it is becoming a true disciple of Christ. For the most part, I think that Christians are their own worst enemies when it comes to destroying hope. We tend to do things and surround ourselves with people that don’t lead to hope. If you want to build your hope, whether you’re going through a trial or not, we need to be more intentional about our actions and our relationships.

How was Paul able to be content in all circumstances? (Philippians 4:11) Back up a few verses (4:8) and he tells us – he was living intentionally. Phil 4:8-9

(If we do) “The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you.” Joy, faith, and hope only dwell in an environment of God’s peace.

(Question for Mary from Moody Radio) Does Bill mean it?

Yes, he truly is a man after God’s own heart.

You and Mary have a beautiful relationship. What do the two of you enjoy doing?

Thankfully, we really do enjoy spending time together. I’m in charge of finding movies and documentaries for us to watch together and we do spend time outside. I’ll just hang out with her as she plants flowers or works in her garden.

You mention seeing God’s miracles. Can you tell us more?

Bill’s family today.

We have prayed for healing and refuse to give up on that because God never changes. He is still the same God who performed the miracles we read about in the Bible and today. I’d rather die looking for a miracle than live not believing.

The equipment I need is very expensive. People we have never met have blessed us financially. In almost every case, God is the only one we told about the need.

Mary says, “It’s like the loaves and the fishes. God provides. We shouldn’t fear.”

Bill closes by saying, “God has done so many amazing miracles on our behalf, but I would like to save this for a possible book.”

I don’t know about you, but I could certainly use more hope in my life. Please join me in prayer that God indeed provides Bill with enough time and ability to write his book.

Find out more about Bill on his blog www.unshakablehope.wordpress.com.

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