I know we are all wishing right now that this post was coming from Bill Sweeney, but instead, I (Lauren, his eldest daughter) will share a little post in his honor. Last year, we were celebrating one last miraculous Christmas with Bill, enjoying his invaluable presence that was still with us. He told us a few weeks before (struggling to type with his eyes) that he knew his body and lungs were shutting down and that he was ready to “throw in the towel” and say goodbye to his ALS-depreciated body. “The jig is up,” he sarcastically typed to my mom. (He would always somehow find a way to make us laugh despite the heavy circumstances.) The past several years had been a long journey of near-death experiences and fighting to stay alive with the aid of my mother right beside him.
Every day of his 24-year journey of ALS, Bill would wake up believing Jesus would heal or at least that Jesus was calling him to suffer well with Him, believing for the impossible. This filled his soul with hope and his dying body with determination. He gave 2 Corinthians 4:16 so much context: “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.” He wasn’t fearful, however, of dying. It was quite the opposite. He taught me that this time on earth is not our home. Eternity is what we live for when we are finally with Jesus face to face.
Most of our December 2020 was spent enjoying quality time with him. Although a sad, solemn month, there was an overwhelming peace and rest over the house and our hearts. I learned during these last days with my dad that sometimes resting in the Lord is harder than rising up in faith and fighting. True rest is not a break from tension but resting through the trials. Our whole family had run a long-suffering race with this disease and now the Lord was asking us to lay down our swords and trust Him in a new way.
One morning I had been in my dad’s room sharing with him about the theme of “rest” that God was speaking to me through his Word. My three kids were playing in the other room. I walked in the office and found them writing random letters as “passwords” with paper and pens scattered around the room. I walked up to my barely-five year old daughter, who could not write actual words at the time, and on her paper she had written “REST” as her “password” not knowing she had formed an actual word. Ok, Lord, I hear you! Ha!
Life is constantly forcing us to take a deep breath and choose to surrender all control to God. He has to daily remind us of trust because He knows it does not come naturally, and we obviously want to run from all discomfort. The learning-to-rest game is a muscle that constantly has to be flexed, an art that is always in need of more nurturing and sculpting. There’s no mastered end-goal of this journey but rather a way of life—inhaling deeper breaths and exhaling contentment, releasing anxiety and control. This is analogous with natural childbirth. When I chose not to get an epidural during the delivery of my three babies, the main thing that I remember my midwife and others coaching me in was to relax during the pain. The more tense any muscle got in my body, the more pain I would feel. DO YOU KNOW HOW HARD IT IS TO RELAX IN EXTREME PAIN!? But He calls us to this rest every day and season despite the circumstances (even if we aren’t always successful).
He knows our whole life on earth has extreme “birth pains”, but it is not a waste. “For this light momentary affliction is preparing for us an eternal weight of Glory beyond all comparison.” (2 Corinthians 4:17) Like this analogy, I believe Bill did learn this surrendering art so beautifully—letting go of self and receiving the Grace that empowered him to “fight the good fight of faith”.
This was my first Christmas without my dad—to hug, laugh with, give him a gift. Even with him having ALS for 24 years and unable to talk, walk or hug me back, his presence was always in the home. His presence was always still available for me to text/email or send funny videos of my kids with the confidence I would get a response. I know many of you can relate as you are also missing someone’s presence especially during these holidays.
I’ve realized that the most comforting thing about being with someone I love is not the topic of conversation or what we choose to do, but simply their presence. If we put so much value on one human in our life that we love so dearly, how much MORE substantial and real is The Presence of Jesus that will never leave us!? I believe God created our hearts with this presence-craving deep within us because He actually has that same hunger in Him for ours. God craved to share His presence with us so much He chose to send his only son as a weak baby to a dark earth to then be the ultimate sacrifice for us by receiving the most painful, humiliating death by crucifixion.
Presence releases rest, and rest releases Presence.
“In repentance and rest is your salvation. In quietness and trust is your strength.”
My family and in-laws had a skiing trip planned for Colorado after Christmas, and because dad was feeling a bit better and was deeply determined for us to still go on our trip, we continued our plans. As we ascended the mountains of Colorado, Daddy also was beginning his ascent to heaven, and around midnight on December 30th, he finally received his full healing! I caught the next flight out of a small airport with ironically the acronym code “ALS”. I had a one-way ticket leaving ALS, never to return!
I believe we are all on this ascent of learning rest, enjoying His Presence, and letting go of self to take hold of His strength in our weakness! Thank you for all your prayers, support, love tears and laughs throughout this journey. I could write so much more about the power of love and prayer from each one of YOU through all of this! Merry Christmas and Happy New Year from our family to yours!
This will be the shortest post I’ve written. It’s a post I never expected to write because I didn’t expect to be alive this Christmas.
Of my more than twenty-four years with ALS, the last month has been the toughest. Beginning around Thanksgiving, my breathing went from bad to worse. I fought so hard to write my previous post about the victory over death through Christ, thinking it would be my final post.
It got to the point where I couldn’t sit up to look at my computer, let alone read or reply to emails or comments on my blog. Mary signed in and read my email to me. I wanted nothing to do with TV, so I laid back and listened to faith-building YouTube videos or had Mary read to me. It’s probably too much information, but my body couldn’t tolerate the formula for my feeding tube, so I pretty much quit eating altogether. My skinny body continued to deteriorate. I was fading fast.
Our daughters, Lauren and Leah, came in to help Mary make funeral plans. I was at peace and so ready to leave this emaciated old body behind. There were three or four nights that I just knew would be my last. But, like in the movie Groundhog Day, I’d wake up in the morning trapped! Then, I finally figured out the reason for my waking up those mornings I didn’t expect to – IT IS YOUR FAULT! I’m referring to all of you who have been praying for me. I don’t know what today or tomorrow holds, but it looks like, due to the powerful prayers of my family and friends, I’ll get to spend another Christmas with our kids and grandkids.
THANK YOU and MERRY CHRISTMAS!
“The angel said to them, “Do not be afraid; for behold, I bring you good news of great joy which will be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord.” (Luke 2:10-11).
As most of my regular readers know, I have been battling ALS for 24 years. I was diagnosed in 1996, just weeks after turning thirty-six. How’s that for a birthday gift? The neurologist over the ALS Clinic in Houston, Texas, told me that I had 3-5 years to live. This relentless disease progressed pretty much how the neurologist predicted it would—except for the part about my dying within five years.
Ten months after being diagnosed, because of some painful and embarrassing falls and my voice beginning to sound like I had a few too many, I was forced to resign from the job I loved as a Regional Sales Manager in the grocery industry. I finally figured out that it probably wasn’t a good reflection on the company to have a salesman walking funny and slurring his words. When I finally resigned, my boss was probably thinking, “It’s about time!”.
Mary and I took a much-needed vacation to Hawaii the month after I resigned. The day before leaving, I tripped walking across the living room and broke my clavicle. Another painful fall, but because I was alone in the room, at least it wasn’t embarrassing. I fought hard not to use a wheelchair, and I have scars to show for it. I called that a “fight of faith”, but the truth is, it was just pride. Pride is a deceptive foe who enjoys dressing up as good and godly virtues.
As I mentioned, the course of ALS went as the neurologist predicted it would. Walking and talking became a slow and deliberate process. Typing on my computer, even pecking away with one finger, soon became impossible. Even worse, I lost my ability to turn the pages of a book. That was a tough loss—no more reading my Bible in the morning or reading books throughout the day. Before upgrading to this kind of computer that uses a camera to track my eye movements, I used a system that tracked a little silver dot on my forehead. I then discovered a little online startup company named Amazon, which sold a limited selection of e-books, including the Bible, which I was able to download. I also bought a Bible software on CD. I’m so thankful for the technology that allows me to carry on.
Over the last twenty-four years, I spent a lot of time figuring out what this thing we call faith is. With a death sentence hanging over my head, I thought it was a good time to figure this faith thing out.
The first and most important thing I discovered is that I’d never have strong faith until I understood God’s true nature. We get to know God’s nature by reading His word. For example, Galatians chapter five gives us some of the characteristics of His nature and tells us that if we are Christ’s disciples, we should be becoming more and more like Him:
“The fruit of the Spirit (God’s nature) is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control…” (Galatians 5:22-23).
But this raises a question: if God is love, kind, good, faithful, and gentle, why did He allow me, a hard-working husband and father with two young daughters to support, to get ALS?
Even worse, my daughter and son-in-law are friends with three Christian couples who have little boys (ages 5, 6, and 7) battling cancer. What’s up with that?
For the follower of Christ, God is our Heavenly Father. If God is our Father and His nature is as good as the Bible tells us, why would He allow His children to get these horrible diseases or die in tragic accidents?
I’ve concluded that none of this is His will for humanity!
How have I come to this conclusion?
Simple. I took a peek at the end of The Book, which reveals God’s will:
“I heard a loud voice from the throne, saying, “Behold, the tabernacle of God is among men, and He will dwell among them, and they shall be His people, and God Himself will be among them, and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.” (Revelation 21:3-4).
God’s will is for no more mourning, no more crying, no more pain, and no more death!
However, for a short time longer, we are still living in a fallen world. Jesus suffered, died, and rose from the dead to end everything that is not God’s will. It’s a fait accompli—a done deal!
“The last enemy that will be abolished is death.” (1 Corinthians 15:26).
That’s right; death is God’s enemy! Also, everything that causes crying, mourning, and pain are His enemies too. God hates these enemies so much that He sent His only begotten Son as a sacrifice to put an end to them. This is the Good News I discovered in 1983.
If you are a follower of Christ and going through a difficult time right now, don’t lose hope, your Heavenly Father is on your side. The age of miracles has not passed. Mary and I have seen and experienced so many undeniable miracles.
You might ask, “But you’ve had ALS for twenty-four years; why haven’t you been healed?”
I don’t know the answer, but it was discovering that the Lord was in the ring fighting with me that kept me “fighting the good fight of faith.” In addition to His Spirit inside of us, urging us on, He helps us fight by recruiting prayer warriors to help hold us up. He also sends us generous people to help us with any needs we might have. He sends others to encourage us. By these pieces of help coming together, His grace becomes sufficient. What we call “our trial” is not just about us if we’re followers of Christ.
To those of you who have been in this fight with us, Mary and I are eternally thankful for you.
“When this perishable will have put on the imperishable, and this mortal will have put on immortality, then will come about the saying that is written, “DEATH IS SWALLOWED UP in victory. “O DEATH, WHERE IS YOUR VICTORY? O DEATH, WHERE IS YOUR STING?” (1 Corinthians 15:54-55).
Due to the pandemic, many in America and other parts of the world are living in isolation. As someone who has been living as a hermit due to ALS for more than twenty years, it didn’t take this pandemic for me to discover that living like a fugitive in a hideout isn’t good for you emotionally or spiritually. Living in isolation isn’t good for us physically, either. From what I’ve read, people are abusing food, alcohol, and drugs more often.
The Bible also tells us that isolation is not God’s plan for mankind. The first observation that God made after creating man was, “It is not good for the man to be alone…” (Genesis 2:18). He told Adam and Eve to be “fruitful and multiply.” God made us for fellowship with Himself and with others who are living for Him.
It didn’t take long for Adam and Eve to mess up God’s original plan. The very next chapter records the “fall of man.” Their disobedience introduced mankind to shame, fear, pain, sickness, blaming God and others for our wrongs, deception, spiritual and physical death, and hiding from God–the worst kind of isolation there is.
With a few exceptions, things went downhill from there. But then Jesus, “the second Adam,” came to show us how we can get everything back that the first Adam lost. He paired up His disciples and gave them the “Great Commission”:
“Go therefore and make disciples of all the nations, baptizing them in the name of the Father and the Son and the Holy Spirit, teaching them to observe all that I commanded you; and lo, I am with you always, even to the end of the age.” (Matthew 28:19-20).
Jesus never sent one of His followers out alone, not even on a simple errand. The only instance I can find of a disciple going out alone is when Judas went to betray Jesus. The night Jesus was arrested, Peter was encircled by an angry mob and didn’t have another disciple with him. When pressed three times, he denied being a follower of Jesus. When a lion hunts, it tries to isolate a weak member of a herd. I wonder if Peter was thinking about that night as he wrote this:
“Be of sober spirit, be on the alert. Your adversary, the devil, prowls around like a roaring lion, seeking someone to devour.” (1 Peter 5:8).
I didn’t attend church for three months after making a commitment to follow Christ in 1983. I still believed the “most Christians are hypocrites” lie. I was afraid that if I went to church, their hypocrisy might rub off on me. I set an all-time speed record for going from unworthy sinner to self-righteous hypocrite. Meeting in my small apartment, the Church of Me, Myself, and I wasn’t working out very well, and the pastor was not very good, either.
“Whoever isolates himself seeks his own desire; he breaks out against all sound judgment.” (Proverbs 18:1).
“Two are better than one because they have a good return for their labor. For if either of them falls, the one will lift up his companion. But woe to the one who falls when there is not another to lift him up…And if one can overpower him who is alone, two can resist him. A cord of three strands is not quickly torn apart.” (Ecclesiastes 4:9-12).
The grandmother of a friend invited me to church and lunch after at their home. I agreed to go. Living in Texas, eleven hundred miles from my mother’s cooking in Illinois, the offer of a home-cooked meal was too good to pass up. I kept going back to that church and made many good friends, including my best friend, who I married thirty-five years ago this month.
There are hypocrites attending church, of course, but, from what I’ve observed, most of the people I used to classify as hypocrites are just churchgoers or sincere believers saying or doing something un-Christian. Regardless, the Great Commission is not merely for us to attend church, but for us to become disciples of Christ and to disciple others.
Because ALS has rendered me homebound, I haven’t been able to attend church in years. I miss going to church. Sadly, many of you now know what it’s like to be without your church family. With the death, economic destruction, political division, and the closing of churches and relief organizations, COVID-19 looks as if it was stirred together in a cauldron by demons over the flames of hell.
Where is God in all of this?
He is still on His throne. He is still assisting Christ’s disciples in fulfilling the Great Commission. And He is also working through them to meet the needs of the poor and suffering.
“Let us hold fast the confession of our hope without wavering, for He who promised is faithful; and let us consider how to stimulate one another to love and good deeds, not forsaking our own assembling together, as is the habit of some, but encouraging one another; and all the more as you see the Day drawing near.” (Hebrews 10:23-25).
I know it must sound crazy to those who are not followers of Christ, but many of us believe that we are living in the last days. As the above passage tells us, it’s vital for disciples of Christ to gather together and strengthen one another’s faith. The passage ends by telling us that this is even more important as we “see the Day drawing near.” You don’t have to be a theologian to figure out that “the Day” is Judgment Day.
It’s great to attend church, but, as we now know, this option can be taken away. In these difficult days, be intentional to surround yourself with strong disciples. With COVID, we might have to get creative and meet over Facetime, Skype, or Zoom. You don’t need a large group; two or three will do.
“For where two or three have gathered together in My name, I am there in their midst.” (Matthew 18:20).
(Friends, I have been AWOL from the blogging world the last month or so. I have missed interacting with you. I have been dealing with breathing and exhaustion issues. As most of you know, I type with an eye-tracking computer. I’ve discovered that I have to keep my eyelids open for the computer to work :-)).
Over the last twenty-four years that I’ve had ALS, Mary and I have learned to take one day at a time. But this day, October 5th, is noteworthy because it happens to be my 60th birthday!
I was diagnosed just weeks after my 36th birthday. The prognosis was that I’d be dead before turning forty. My 40th birthday was a big deal. My 50th birthday was a bigger deal. But now I am 60!
“Do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.” (Matthew 6:34).
Like the manna in the wilderness, God’s grace is only sufficient for today.
Taking this trial one day at a time, with God’s grace and the prayers and help of family and friends, we’ve been able to cope for over 8700 days. If you’re going through a difficult time right now, focus on today, and God will give you new strength tomorrow morning.
“The LORD’S lovingkindnesses indeed never cease, For His compassions never fail. They are new every morning; Great is Your faithfulness.” (Lamentations 3:22-23).
The picture below was taken in 1996, a month and a half after I was diagnosed.
That Christmas was bittersweet. We packed up our minivan and drove to Wisconsin and then Chicago to spend Christmas with my family. While staying with my sister’s family in Wisconsin, I took the first of probably a thousand painful falls.
I woke up before everyone else that Christmas morning and tried to sneak downstairs to get my video camera set up. Apparently, my legs were not fully awake and gave out at the top of the stairs. I rode my tailbone down the stairs and woke up everyone in the house. My tailbone hurt for months. I followed that with a few falls on icy driveways. Physically speaking, it went downhill from there. But, spiritually, I began to grow in faith.
“I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.” (Romans 8:18).
Does the above verse include getting ALS at thirty-six, losing your career, becoming paralyzed, unable to eat, helpless and voiceless? A million times, YES!
As the Bible says, our lives are like a vapor that appears for a little while and then disappears. It’s eternity that matters. The more we focus on eternity, the smaller our problems seem.
“We do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.” (2 Corinthians 4:16-18).
As you’ll see in the picture below, sixty years of life and twenty-four years with ALS has caused a lot of decay on my outer man:-)
I often wonder how anyone could have hope, joy, and peace, relying on the temporal things and the decaying “outer man”? More than that, why would anyone want to do this when Jesus suffered, died, and rose from the dead to offer you unshakable hope?
This is what I’m asking God for my 60th birthday gift – that just one person would read this post and make a commitment to follow Christ as I did thirty-seven years ago.
“For God so loved (your name here),that He gave His only begotten Son, that (your name here) believes in Him shall not perish, but have eternal life.” (John 3:16).
“Christianity asserts that every individual human being is going to live for ever, and this must be either true or false. Now there are a good many things which would not be worth bothering about if I were going to live only seventy years, but which I had better bother about very seriously if I am going to live for ever.” – C.S. Lewis
My siblings and their families planned to come down to celebrate my 60th birthday, but the pandemic put an end to their plans. I still had a wonderful birthday celebration with Mary’s mom, our girls, son-in-law, and grandkids.
To the family and friends who have already sent me birthday wishes and gifts – Thank You! Your messages are humbling. If wealth is measured by the love of family and friends, I am the wealthiest man on earth.