Author Archives: Bill Sweeney
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.
It’s hard for me to believe, but July 7th marked the seven-year anniversary of my Unshakable Hope blog. And, most surprising of all, after nearly twenty-three years with ALS, I’m still alive!
For Christians, the barren wilderness is a metaphor for life’s trials. I like this picture because rainbows, a sign of God’s promises, can be found even in the wilderness times of life. I also like that this wilderness path is wheelchair accessible.
I started this blog to share the hope I’ve found in Christ, with the goal of strengthening the faith and hope of other Christians going through trials. While in the midst of my own trial, this is one of the things that I believe God has called me to do. So many followers of Christ are going through difficult times. If anyone became a Christian thinking they would be exempt from trials, they will be sorely disappointed. Christians and non-Christians go through trials, the difference is that Christians can have peace and hope when life gets hard:
“…I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” (John 16:33).
Back in 2012, when I started blogging, I didn’t think about making new friends through my blog or reading posts on other blogs that would strengthen my hope and faith. This has been a great bonus. I now believe this is probably half the reason that God was prompting me to start my blog.
The name of my blog comes from a verse in the book of Hebrews. Seven years ago this month, as I was reading the Bible on my computer, just like I’ve done since losing my ability to flip the pages of a book thirteen years earlier, I scrolled down to Hebrews chapter eleven. This is one of my favorite chapters in the New Testament. It’s a chapter about holding onto faith while going through hardships. So many of God’s people have endured suffering by looking to Him for strength. This chapter lists several examples of true faith. These are men and women who refused to compromise their faith, even when doing so would have ended or lessened the trials they were facing. In short, Hebrews chapters eleven and twelve are about becoming eternally–minded.
The end of chapter twelve sums this up; telling followers of Christ to stay focused on our eternal hope. The temporary and material things can, and eventually will be destroyed. Created things, including the body we’re living in, will decay. In my case, ALS has turbocharged this process.
“…the removing of those things which can be shaken, as of created things, so that those things which cannot be shaken may remain.” (Hebrews 12:27)
After reading the Hebrews 12:27, I went online and bought the domain Unshakablehope.com and started this blog.
Unfortunately, trials don’t occur in a vacuum. The different parts of our lives are so interconnected that a trial of our health, like my being diagnosed with ALS at the age of thirty-six, affects virtually every other area of our lives. When I was diagnosed, it was as if an earthquake occurred; the career that God had blessed me with, and I had worked so hard to build, was removed. Because of this, our finances were greatly shaken. On and on it goes.
I won’t spend the time or waste the effort to list the “created” and temporal things that were removed or shaken in our life. Either you know firsthand or have witnessed the shock-waves and aftershocks that come from the epicenter of a horrible diagnosis, a job loss, a divorce, the death of a loved one, or another of life’s many earthquakes.
So many areas of our lives, including our health, can be shaken. But, if we look to God during our trials, our hope in Christ is one of the things that cannot be shaken.
Our hope in Christ is an Unshakable Hope!
“My soul, wait in silence for God only, For my hope is from Him. He only is my rock and my salvation, My stronghold; I shall not be shaken.” (Psalm 62:5-6)
Please don’t put your hope in temporary and created things, not even another person, because everything we see with our natural eyes will eventually disappoint us.
“Don’t let happiness depend on something you might lose.” C.S. Lewis
Have you ever had an itch that you couldn’t reach to scratch?
This is yet another frustrating aspect of having ALS; being paralyzed by this cruel disease, I cannot scratch my own itches. Over the twenty-two years of my having ALS, I’ve become pretty good at blocking out everyday itching from skin irritations.
The most irritating itches are those caused by insects!
When the weather is nice, I enjoy kicking back in my wheelchair on the patio and listening to audiobooks. This would be much more relaxing if the insects would leave me alone. They seem to know that I am powerless to swat them and take full advantage of this. Several times, mosquitoes have landed right on my forearm and have taken all of the blood they could handle. Their buzzing sounds a lot like laughter as they fly away, leaving me with an itchy bite I can’t scratch.
But worse than the bold mosquitoes are I demonic house flies. On more than a few occasions, these disgusting flies have conducted coordinated attacks on me. They’d fly into my nostrils and ears and land on my lips. It’s as if Beelzebub, the ancient pagan “lord of flies,” sent them to torment me. I’m only half joking. Sometimes I really do wonder what goes on “behind the scenes.”
Two weeks ago, I had a horrible itch on my left side that, no matter how hard I tried, I couldn’t overcome the urge to have it scratched. It was a burning itch as if I had been scalded by hot liquid. Mary lifted my shirt to investigate and discovered that I had bright red welts on the side of my waist. It looked like I really had been scalded by hot liquid. These red itchy welts quickly spread to my back.
It turned out to be shingles. The hospice doctor got me started right away on antibiotics and a cream for the welts. It was thankfully a minor case, there was not much pain, just ten days of itching.
Another kind of itching:
Just before he was beheaded under the Roman Emperor Nero, the last recorded words of the Apostle Paul were a warning about itching. Spending years chained in dungeons, with fleas, lice, and likely irritable skin conditions, I’m sure that Paul knew a lot about itching of the body. But he wouldn’t waste his last words on earth recommending essential oils for skin conditions (I get those recommendations from my daughter, Leah).
Paul issued a warning about the worst of all itches – spiritual itches:
“…the time of my departure has come. I have fought the good fight, I have finished the course, I have kept the faith…” “The time will come when they will not endure sound doctrine; but after their own lusts shall they heap to themselves teachers, having itching ears; And they shall turn away their ears from the truth, and shall be turned unto fables.” (2 Timothy 4:6-7 & 3-4).
At the age of twenty-three, I made a commitment to follow Christ. I wasn’t attending church at this time. In truth, I was still cynical about the whole“organized religion” thing. I don’t recommend this, but for the first three or four months, I didn’t attend church. However, I read the Bible every day. Some days I’d read the Bible for several hours. Before the first time I attended church, I made a commitment to God that if any preacher contradicted what I had been reading in the Bible, I’d stick with what the Bible taught and never attend that church again.
It’s been thirty-six years since I made that commitment and Mary and I have been members of two churches. Thankfully, we’ve never had any serious disagreements with what’s been preached by the pastors. The same can’t be said about some of the messages I’ve heard on television, the radio, and YouTube.
I know that there have been false teachers for all of the two thousand years of Christianity, but it’s never been as bad as it is now.“The time” that Paul warned us about just before being executed is here; we’re living in times of great deception.
Please read the Bible and walk away from anyone who contradicts it. It’s a matter of life and death –eternal life and death!
“You never know how much you really believe anything until its truth or falsehood becomes a matter of life and death to you.”― C.S. Lewis
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The Saturday before Easter Mary took me on a long trip. We went to visit our older daughter and our son-in-law, and our three adorable grandchildren. Their home is around seventy miles away from our house.
I know that seventy miles from home doesn’t seem like a long trip to most of you, but anything further than our mailbox is outside of this hermit’s comfort zone. I was somewhat hesitant about getting in the van after our last trip to look at a new neighborhood that is being built nearby didn’t turn out so well.
Unlike the newer smooth-driving minivans with wheelchair ramps, we have a big not-so-smooth-driving Ford van with a hydraulic wheelchair lift. My wheelchair weighs about three hundred and fifty pounds, and I weigh about a hundred and sixty-five pounds. So the lift has to raise and lower over five hundred pounds. Using the controls, Mary lowers the lift so my wheelchair can back onto it. She then raises me to the level of the van where I can then back in. Our van and the wheelchair lift are twenty-one years old, but both work well. Usually.
It was difficult for me to look around the new neighborhood because, like every other muscle in my body, my neck muscles are extremely weak, so with every turn of the van, my head swung back and forth. To people following us, I probably looked like a life-sized bobblehead figure. But, other than having a neck ache when we returned home from our brief excursion, everything went fine. Mary just had to get me out of the van and get me back into the house. If it were only that easy.
After raising the lift halfway, I saw a panicked look on her face. “The lift is stuck!” After she pushed the up and down buttons over and over, I concluded the obvious – I’d be spending the rest of my life stuck in the van. We taught our girls never to call 911 unless it was a real emergency. This situation wasn’t like a heart attack or a car accident, but I knew that Mary and her eighty-six-year-old mother were not going to lift me and my wheelchair out of the van. Mary called 911 and explained the situation, telling them not to hurry, but…
Within minutes I heard sirens in the distance, and they were getting louder and louder. As I sat there hoping that God would somehow keep our neighbors from hearing the sirens and seeing the flashing lights, a big firetruck parked in the street and an ambulance pulled in the driveway. Just ten minutes after Mary made that “no need hurry” call to 911, six men and a woman were standing in front of me scratching their heads.
I have an old manual wheelchair in our garage, and they were able to lift me out of my wheelchair and plop me in that wheelchair. They were then able to lift my heavy wheelchair out of the van and transfer me back. We are so thankful for first responders, I just wish they didn’t have to use sirens and flashing lights. I don’t know for sure, but I think some of my neighbors might have gotten a glimpse of me for the first time. Mary got the lift repaired the following day, and it works great now.
This was actually the second time we had to call 911 because of this wheelchair lift malfunctioning. The first time was a scary situation. About five years before this incident, on our wedding anniversary, Mary and I decided we would pretend that we were a normal couple and go to see a movie. Everything went fine until we exited the theater and saw the pouring rain. Thankfully, our van was parked only about a hundred feet from the doors of the theater. Handicap parking is great. I turned the speed of my wheelchair all the way up, and we made a mad dash to the van. Mary quickly opened the doors to the van and grabbed an umbrella to hold over us as she operated the lift. She’s the best!
Within two minutes I was on the lift being raised up to the level of the van where I would quickly back in, and we’d be out of the rain and on our way home. It didn’t quite work out that way. We heard a popping noise when she was raising me up. “That can’t be good,” I thought.
The lift went all the way up to the level of the van, but there was a two-inch gap between the lift and the floor of the van. This has never happened before, the lift is usually flush with the floor of the van. But, my wheelchair is great, I can roll over high thresholds and other minor obstacles like toys that our grandchildren have left lying around. I figured that getting over a two-inch gap would be no problem.
However, I failed to realize that the lift and the wheels of my wheelchair being wet would make jumping this gap really difficult. I still had the speed of my wheelchair on its highest setting, but couldn’t get over the gap and into the van. I tried again and again. I would inch my way to the front of the lift then quickly pull the joystick back. But when the small back wheels hit the gap, the big wheels would start spinning.
I kept trying. The rain increased. Umbrellas don’t work very well when the wind is blowing. We were soaked. “A few more tries and we’ll go back into the theater’s lobby and wait for the rain to stop,” I told myself. I tried again, and the strangest thing happened, something I couldn’t even imagine. Apparently, the engineers who designed this wheelchair lift didn’t envision this happening either.
When I pulled back on the joystick, the small back wheels got stuck in the gap, and the big wheels began spinning just as in previous times. But, instead of the wheelchair going over the gap and into the van, the floor of the lift shot out from under me, sailing over the parking space next to us and landing against a curb. The boy inside of me thought, “THAT WAS AWESOME!” Then, that pesky rational voice in my head quickly took over, wondering: “If the floor of the wheelchair lift just went skidding across the parking lot, what was holding my wheelchair and me three feet up in the air?”
I glanced over at Mary who looked like she was in shock: “Bill, don’t move.” She obviously forgot that I was paralyzed. Trying to remain calm, she explained that only the outside edges of the tires of my wheelchair were resting on the narrow angle iron that used to support the floor of the lift. If my wheels had not been perfectly centered on the lift, the wheelchair and its occupant would have fallen to one side or the other. It turns out that the only thing holding the floor of the lift to the narrow supports was a strip of double-sided tape.
After examining my precarious state, Mary determined that she could not lower the lift because the small back wheels were stuck in the gap and lowering the lift would dump me out onto the parking lot and the three hundred and the fifty-pound wheelchair would likely land on top of me. She called 911, and some big firemen showed up, crawled over the back seat, and pulled me into the van.
I am so thankful for things like wheelchairs, wheelchair lifts, and especially for this computer that allows someone like me to communicate and type blog posts. But I’ve learned the hard way not to put faith in technology or any man-made things.
Was God holding me and my wheelchair up when the floor of the lift shot out from under me?
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” – Albert Einstein
It was so strange to be sitting in my wheelchair three feet up in the air with seemingly nothing under me. But, because the outside edges of the two big tires were resting on the narrow angle iron, there is a natural explanation for my wheelchair being suspended in midair. Therefore, I can’t claim that it was a miracle that the wheelchair didn’t fall when the floor shot out from under me.
However, Mary and I believe that this was a miracle because God has been “holding us up” throughout the twenty-two years of my having ALS. Just when we need assistance, He sends family or friends or, in this case, firemen, to help us.
We know that the life of faith can often feel like we’re suspended in midair. There are times that followers of Christ can feel like God has left us hanging. This is where our faith, trust, and hope in Christ are tested and strengthened.
Hang in there. God has not forgotten you.
“Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.” (Isaiah 41:10)