Author Archives: Bill Sweeney
As I wrote in my post last Thursday, Thanksgiving Day, I have been very ill. To be honest, I was praying for this long journey with ALS to end that night. I was looking forward to getting further along than I did in my near-death experience that I told you about in my last post. It’s funny to me now, but I was even giving God suggestions on how to take me out, “maybe a heart attack or an aneurysm…” My prayers might have been answered if it wasn’t for you people praying that I’d get better.
“Do not let your heart be troubled; believe in God, believe also in Me. “In My Father’s house are many dwelling places; if it were not so, I would have told you; for I go to prepare a place for you. “If I go and prepare a place for you, I will come again and receive you to Myself, that where I am, there you may be also.” (John 14:1-3)
I know it’s hard to believe in this enlightened age, but I believe I am going to that place one day, maybe one day soon. However, your prayers are obviously more powerful than mine so I began getting much better after posting on Thanksgiving. By Sunday, I was breathing and feeling much better.
Then, an attack I never saw coming!
Mary has a very detailed routine for getting me ready for bed. This routine takes about thirty minutes if everything goes according to plan. Well, Monday night didn’t exactly go according to plan.
For many years I’ve had a bad case of TMJ. Because of this, I have worn a mouthguard on my top teeth to keep me from clinching when I sleep. The dentists have told me I have the worst case of TMJ they’ve seen. I would crack and crush my mouth guards. They finally made me one out of new stronger material, and they used extra material to make it twice as thick as a standard mouthguard.
Back to my story: Monday night, Mary put my mouthguard in, but it slipped off and began wandering around my mouth and quickly disappeared down my throat! Mary went into panic mode and started sticking fingers in my mouth. I didn’t do it on purpose, but I bit down on Mary’s fingers, and, of course, she screamed like a woman giving birth to a ten-pound baby.
She then put on a big leather glove and tried again, but I clamped down on fingers again. I suppose it’s a reflex reaction. The leather gloves didn’t help, she screamed loudly again. The mouth guard was so far back in my throat that Mary couldn’t even see it. She finally called 911, and eight minutes later, an ambulance pulled in the driveway, followed by a fire truck parked in the street. Before I knew it, six men were surrounding my bed, and two began fishing around in my mouth. I only bit one of them.
They couldn’t see the mouthguard either and began asking Mary if she was sure that it was in there. They were talking about intubating me and transporting me to the hospital. I gave Mary “the look,” and she told the guys that I have a Do Not Resuscitate order. I did not want to be intubated or be transported to the hospital.
We were at an impasse, they couldn’t fish the mouthguard from my throat, and I refused to go to the hospital. As I was lying there with the mouth guard mostly blocking my ability to breathe, I found the whole situation kind of funny. I’ve had ALS for twenty-three years, and I’ve been through numerous painful falls, several cases of horrible pneumonia and flu, and so much else. Now, my mouth guard is going to take me out? I know it’s dark humor, but it is funny in an ironic kind of way.
Obviously, I’m still alive. One of EMTs put my head back up, and when he did, the mouth guard dislodged and popped foreword. I looked at one of the guys, and it’s as if he was able to read my mind. He asked for a tool and slowly opened my mouth and retrieved the blood-covered mouthguard from the back of my mouth. Needless to say, I didn’t wear my mouth guard last night and will never wear it again.
I’m hoping to be able to sleep like Mary’s eighty-seven-year-old mom, who lives with us. She slept through Mary’s blood-curdling screams and, even though her bedroom is at the front of the house, she never heard the sirens or the commotion.
Thank you so much for your prayers!
“Blessed are you who weep now, for you shall laugh.” (Luke 6:21).
I didn’t plan to share this on my blog because it’s very personal. To date, I’ve only shared this Mary and a few others after a conversation about near-death experiences.
Before sharing my NDE, please let me tell you why I decided it was time to share this. I am very ill right now. What began as probably a common cold has evolved into something much worse, as it does so often in those with compromised immune systems. Other than typing a few emails, I haven’t been on my computer over the last ten days that I’ve been battling this. The hospice nurses have been coming to check on me regularly. Hospice is such a blessing. It looks like it might be an upper respiratory infection or possibly pneumonia. They put me on the same antibiotics that I was on last year when I was battling pneumonia. Needless to say, we canceled Thanksgiving dinner at our house. Mary’s sister was happy to have Thanksgiving at their home. Mary and I are looking forward to a quiet and hopefully restful day alone. I think we’ll list all of the things we’re thankful for, which will be a very long list. God has been so good to us.
I’ve written about this in previous posts, but in September of 2018, I came so close to dying from pneumonia. It was then that I was handed over to hospice. To everyone’s surprise, I recovered from pneumonia, but I still have this ALS thing. I was back on my computer ten days after coming down with pneumonia. However, that battle weakened me significantly. I’m exhausted most days, more so over the last six months. Most of you know that I’m completely paralyzed and cannot speak, so I use an Eye-tracking computer to communicate and post on my blog. Using an Eye-tracking computer can be a real problem when you can’t open your eyelids. I have not been reading many blog posts or anything else over the last six months, including the Bible. Many days I close my eyes and listen to an audio Bible.
As followers of my blog know, a month after I recovered from pneumonia, Mary was laid-off from the at-home job she’s had for almost thirty years. It was difficult, but we tried hard not to go into panic mode. One of the verses we clung to during that time, and continue to cling to is Romans 8:28:
“And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”
Well, let me tell you what happened after Mary was Laid-off. My brother opened a Go Fund Me Account for us, and the contributions, along with other generous gifts, exceeded Mary’s annual income! I have needed her assistance so much more since having pneumonia, and now I have a full-time caregiver. God is so good! Thank you so much to those of you who contributed and/or prayed. You can now see why our list of blessings is going to be so long.
(Recounting your blessings are so good for you; I feel better than I’ve felt since this illness began ten days ago after typing that. Mary just came in to check on me and said, “I can’t believe how good you’re doing.”)
I’m sorry my intro to sharing my near-death experience was so long, much longer than I intended it to be. I decided to share it in hopes that it might bring comfort to someone that’s drawing near to death’s door. It has brought me so much comfort every day.
I’m also posting it to tell my family and friends not to mourn for me when you hear I’ve stepped into eternity because, as the Bible promises, and as my brief near-death experience showed me, it’s a place of peace and joy that cannot be attained here on earth. The last thing I want to do is diminish the joy and peace that is waiting for me. I know that one day, maybe one day soon, I’ll answer to Christ for every word I’ve spoken and written, including what’s written below. Especially for what I’ve written below.
My Near-Death Experience
It was January 31st, 2015.
Just a day before my sisters Paula and Lyn came to visit for the weekend, I came down with a horrible case of the flu. At the time, I didn’t know that I had the flu. If I had known, we would have asked them to reschedule their trip.
The day they arrived, I was feeling a little better. In hindsight, I just convinced myself that I was feeling and getting better. However, that night, I became much sicker. A full-blown case of influenza is horrible for even a healthy person, but, as I quickly discovered, it’s much worse for someone weakened by then eighteen years of ALS. Add to this a compromised immune system and only one-third of my lungs functioning, it’s as bad as it gets. Needless to say, I was not a good host that weekend. I spent the rest of the weekend in bed with Mary coming in to check on me every thirty minutes.
I had never been that sick in my life, it was miserable. I was running a high fever, and every bone, muscle, and every other part of my body was in excruciating pain. On top of this, my breathing passages were congested so even with my breathing machine forcing air through my nose, I was gasping for air through my mouth. I just wanted to sleep, but because of the pain and my having to gasp for air continually, I couldn’t even doze off for a short nap.
This constant misery continued for probably 36 hours. Then, just when I thought it could not get any worse. When I was at my absolute weakest. When my head hurt so bad that I thought it would split. When my breathing passages felt completely blocked, something incredible happened – I died.
All of the pain left me instantly and completely. And, there was no more congestion or breathing problems. Let me be more specific; this was not like it was easier for me to breathe, and the horrible pain went away. It was the total absence of pain, and I didn’t even feel the need to breathe. I was in a state of indescribable joy and peace. Long before I was diagnosed with ALS, when I was at the healthiest point of my life, I couldn’t even imagine feeling as good as I felt for those brief seconds. I knew that I had left my body.
Then, after probably less than twenty seconds, I returned to my body. The pain and the breathing problems returned, but I began to recover quickly from that point on. There are no words to describe this, if there are, I haven’t found them yet.
I don’t think a day has gone by that I haven’t reflected on this encounter with the first after death. This revelation has left me strangely excited about the day I enter eternity. Even though this near-death experience was brief, I now know what perfect peace and perfect joy feel like. Perfect joy and perfect peace are inseparable. They are one and the same.
After reading this, you might be asking why, “If eternity is so great, why do you continue to battle ALS?” I am the first to admit that living completely paralyzed, voiceless, wheelchair-bound, and relying on a ventilator to breathe for me and a little pump to feed me is not exactly a good quality of life. I press on because I made a commitment to Christ to share the Good News:
“For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life.” (John 3:16).
Happy Thanksgiving, family, and friends!
Let’s be honest, Christianity is uncool. If anything qualifies as an uncool worldview, it’s being a follower of Christ. If you are living for Christ, you are not one of the cool kids.
Uncool: failing to accord with the values or styles (as of dress or behavior) of a particular group: not accepted or admired as cool.
Regardless of where or when we’ve lived over the last two thousand years, followers of Christ are not, have never been, and will never be, a part of the in-crowd. I’m uncool, but I’m okay with that.
It’s kind of funny when I think about it; ALS has forced me to double down on my uncoolness. Being paralyzed, I can’t even dress myself in stylish clothes or brush my own hair. I’m thankful that Mary and others buy me nice clothes to keep me fashionable. After my shower this morning, Mary even sprayed cologne on me after getting me dressed. I think I’m probably one of the best dressed and sweetest smelling recluses in the world. But, I’m still uncool.
I made a commitment to follow Christ in 1983, at the age of twenty-three. This was thirteen years before being diagnosed with ALS. I knew at the time that becoming a follower of Christ was a really uncool thing to do. But, in the thirty-six years that I’ve been a follower of Christ, it’s a commitment I’ve never regretted making. Thirty-four years ago today (11/2/19), Mary and I were married. This is another commitment I’ve never regretted making. She loves me unconditionally, uncoolness and all.
“…everyone who confesses Me before men, I will also confess him before My Father who is in heaven. But whoever denies Me before men, I will also deny him before My Father who is in heaven.” (Matthew 10:32-33)
I heard on the news that the famous music artist, Kanye West, confessed that he has become a follower of Christ. Do you think his public confession will make Christianity seem cool in the eyes of his fans? Maybe some will listen to his testimony and choose to become followers of Christ. I sure hope so. But, if his commitment is real and lasting, the majority of his fans will think he has become uncool and follow someone’s that’s cool in their eyes. That’s just the way it works.
“If the world hates you, you know that it has hated Me before it hated you. “If you were of the world, the world would love its own; but because you are not of the world, but I chose you out of the world, because of this the world hates you.” (John 15:18-19).
Before becoming a follower of Christ, among other things, I did think of Christians as uncool, but I didn’t hate them. I was pretty much a whatever kind of guy. After all, I was raised in America; I didn’t care what you believed or practiced as long as you didn’t tell me how to live or what to believe. However, it’s not that way in most of the world.
Through my work as an Online Missionary with Global Media Outreach and through this blog, I’ve had the privilege of communicating with followers of Christ all over the world. Most people don’t know about this, but the fastest growing church in the world is in – IRAN! (There’s an excellent documentary about this on YouTube).
In Iran, it’s not just uncool to be a follower of Christ, it’s also illegal. The rapidly growing church in Iran is entirely underground. They meet in small groups in the homes of brave men and women. These courageous people are risking their lives for the sake of Christ, just like the first Christians did.
But, it doesn’t matter if you live in an Islamic country or in an open society like America, living as a born again follower of Christ, is the ultimate counter-cultural life. But it’s still uncool.
I started reading the Gideon Bible that I stole from a hotel room when I twenty-one. As I said, I became a born again Christian two years later. I’m a slow learner. Before reading John’s Gospel, I thought that the term “born again” was like “Jesus freak” – just another term to make fun of Christians. I had no idea that all true Christians are born again. I didn’t say this, these are the words of Jesus:
“Jesus answered and said to him, “Truly, truly, I say to you, unless one is born again, he cannot see the kingdom of God…unless one is born of water (natural birth) and the Spirit he cannot enter into the kingdom of God. That which is born of the flesh is flesh, and that which is born of the Spirit is spirit. Do not be amazed that I said to you, “You must be born again.’ (John 3:3-7)
Do you consider yourself to be a Christian, but you’re hesitant to call yourself a born again Christian?
Is it because you’ve spent years crafting an image of yourself that you must uphold?
In a sense, I suppose that Jesus is Lord over a motley crew, from the world’s point of view, anyway. It’s a group that includes those who have been humbled by life’s hardships; disease and despair, addiction and abuse, poverty, and loneliness. As the Apostle Paul wrote, Christ’s followers are viewed by many as “…the scum of the world, the dregs of all things…” Sign me up!
When I was a teenager, leisure suits and flowered shirts with giant collars were cool. You can see where I’m going with this. What’s cool today will be laughed about by the next generation. Only temporary things are cool. Followers of Christ might not be cool, but we have a permanent and eternal hope that will never disappoint.
“Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle, and you will find rest for your souls.” (Matthew 11:28-29).
October is my favorite month of the year!
When I was a kid, October was my favorite month because my birthday is in October (5th), and it meant I’d be getting gifts and having cake and ice cream. What’s not to like?
As I grew older, the whole birthday thing became less and less important to me; especially after ALS took away my ability to eat the delicious carrot cake that Mary made me for my birthday. No ice cream needed with her carrot cake, just a good cup of coffee.
ALS has also made it difficult for people to buy me gifts for my birthday. Golf balls? No. ALS has taken away my ability to golf. Neckties? No. ALS has taken away my ability to work. A weekend away? No. ALS has taken away my ability to travel. On and on the list goes. ALS has turned me into a reclusive minimalist.
A year ago, on September, 23rd, I came down with a horrible case of pneumonia. I went downhill rapidly. A few days later, even taking heavy doses of antibiotics, I continued the downward spiral. When my kidneys shut down, my palliative doctor handed me off to hospice.
After a week in bed taking heavy antibiotics, to everyone’s surprise, including Mary’s, she’d later confess, I began to improve. I improved enough to celebrate my birthday with our family. My breathing is weaker, I usually have to use my ventilator most of the day, and I battle extreme fatigue, but I am here to celebrate yet another birthday.
I’m thankful to God that He’s allowed me to be here for yet another birthday. But, as I said, birthdays are no longer a big part of why October is my favorite month, and I why fall is my favorite season.
It’s the weather!
When I was growing up in Chicagoland, October was great weather for riding bikes, playing basketball in the driveway, foursquare in the street, or football on the field behind us. This was before computer games, cellphones, cable TV, and so many other time wasters. The colorful leaves were falling all around us as we played; a constant reminder that the long and frigid Chicago winter would soon be here. We had to full advantage of the October sunshine.
Today, so many years later, I live in Texas, over eleven hundred miles away from Chicago. I have been stuck in the house all summer because it is too hot to go outside! Seriously, I don’t even remember the last time I’ve been outside. I’m thankful for air conditioning. I was so happy to see that the weather forecast said we’re going to get our first “cool front.” The daytime high is only going to be around 80 degrees. Brrrrr.
Over two decades ago, ALS robbed me of the ability to play sports or enjoy other outdoor activities. But I still enjoy sitting outside and listening to audiobooks or watching our three grandkids play. God has truly blessed us.
Get outside and enjoy October!
Most people don’t think of breathing as a luxury, after all, even the poorest among us can breathe. They wouldn’t be among us otherwise.
Luxury: a condition of abundance or great ease and comfort.
After almost twenty-three years with ALS, which greatly affects my ability to breathe, I believe the above definition of luxury perfectly fits being able to breathe in ease and comfort. But maybe only those who’ve had breathing problems view breathing as a luxury. I hope this simple post will give readers a new appreciation for the ability to just breathe. I think this is important because, if we learn not to take breathing for granted, we’ll begin to view material luxuries for what they really are – just stuff!
Regardless of location, status, race, religion, politics, or anything else that divides people, taking a breath is the first thing we do when entering this world and the last thing we’ll do when exiting this world.
Breathing is a great equalizer.
The ability to breathe was also the first gift that God gave to mankind:
“And the LORD God formed a man’s body from the dust of the ground and breathed into it the breath of life. And the man became a living person.” (Genesis 2:7).
Even though I don’t have the ability to use or the money to spend on the latest gadgets, I am fascinated by technology. I am literally surrounded by incredible machines that add to my quality of life. My wheelchair reclines and is very comfortable. It even has headlights and taillights for cruising around at night. This wheelchair cost as much as a new car. It was donated to the Muscular Dystrophy Association (MDA) after the original owner died from ALS. I am borrowing it from them.
In front of me, attached to the wheelchair with a bar, is my eye-tracking computer. This special computer enables me to communicate, type this post, and do so much more.
To the right of my wheelchair is a little pump mounted on an I.V. pole. This pump is connected to my feeding tube, and for twelve hours a day, its slowly pumping a lab concocted formula into my stomach.
Finally, to my left, is a ventilator that breathes for me through a little breathing mask that’s plugged into my nose.
Now that I think about it, I might be more machine than human.
Because ALS also weakens the muscles needed to breathe, I’ve been relying on a breathing machine when I sleep for the last twenty years. Increasingly over the last few years, I’ve also had to use this ventilator during the daytime. When fighting for every breath, it’s such a relief when Mary puts the breathing mask on me. I am finally able to relax. That’s a luxury.
A few weeks ago, I was watching a television show called “American Pickers.” This is a show about two men who travel America in a van looking for old items to buy and resell for a profit. In the episode I was watching, these two men were in Florida trying to buy old luxury cars from a wealthy man who lived in a mansion near the ocean.
This elderly man owned several once-beautiful and very expensive cars, but because he lived near the ocean, these cars were just rusting away in the salty air. When I was a boy, while playing with my Matchbox Cars, I dreamed about one day owning some of the very cars that this man was letting sit in his garage and rust away. That little boy in me and the adult me were in total agreement; they both had the same thought – WHAT A WASTE!
The “Pickers” made offers to buy some of the cars, but the man refused to let go of his rusting luxuries.
“Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. “But store up for yourselves treasures in heaven, where neither moth nor rust destroys, and where thieves do not break in or steal; for where your treasure is, there your heart will be also.” (Matthew 6:19-21)
In the years following my diagnoses with ALS, I’ve learned to place a higher value on my many blessings. Apart from the rare visits from that little boy inside of me, my definitions of treasures and luxuries are not the same as they once were.
Breathing is a great luxury.
No matter how bad things look to you, there is hope for a better tomorrow if you’re breathing today.
Thanks for dropping by my blog.