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)
I was thinking about Good Friday when I woke up early yesterday morning. I also thought about people using the phrase “Thank God It’s Friday” to celebrate the end of a work week and the start of the weekend.
Even though the progression of my ALS forced me to resign from my job over twenty-one years, I can still remember that TGIF feeling. Whether I was sitting in bumper-to-bumper traffic on a Friday evening or landing at the airport after being gone all week on a business trip, it felt great to be done with the work week.
Then I thought about the darkest Friday of my life. After three days of grueling tests, which included cutting muscle samples out of my thigh without anesthetic and a spinal tap that left me with a debilitating headache for three days, I was exhausted. Mary and I sat at the foot of a hospital bed waiting for the head neurologist to give us the verdict. I remember it all so vividly, I heard footsteps, many footsteps, echoing off the walls of the hallway. Then, like a jury returning to a courtroom, the neurologist, flanked by a group of young interns, entered my hospital room. He told us the tests showed that I had ALS. He went on to say that I would continually get weaker, be confined to a wheelchair, lose my ability to speak and that I would die in three to five years.
That was not a Friday I was thanking God for.
Two thousand years ago, as the disciples were looking at Jesus on the cross, do you think they called that day “Good Friday?”
I don’t think so either.
I’m sure there was a lot of confusion and crying on that dark day. Maybe they were like Mary and I on the long drive home from the medical center that Friday evening; not even looking at one another for fear of dissolving into tears.
Like Mary and I, I’m sure they were thinking, “This isn’t the way it was supposed to be.”
To add insult to injury, as Jesus was hanging on the cross and, the disciples were surrounded by people that were mocking Him and celebrating His crucifixion:
“Hail, King of the Jews!”
“He saved others; He cannot save Himself.”
“…come down now from the cross, that we may see and believe.”
For the disciples, this day was anything but TGIF.
But Jesus knew differently.
“…for the joy set before Him (Jesus) endured the cross…” (Hebrews 12:2)
It was “for the joy set before Him” that Jesus was able to endure the insults, the flogging, the beatings, and being nailed to the cross.
It wasn’t until Sunday morning that the disciples understood that God’s plan was so much bigger and better than they could have ever imagined:
“…let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross…” (Hebrews 12:1-2)
We can endure the cross we have to bear, no matter how heavy it might be, if we “fix our eyes on Jesus” and focus on “the joy set before us” – eternal life with the One who suffered and died for us.
This does not mean that we have to abandon our hopes and dreams for this life. Far from it. God wants to bless us in this life too. But, making a commitment to follow Christ is the only Unshakable Hope that God offers for this life and the next.
If you haven’t done so already, today is a great day to make this commitment.
“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)
Originally posted April 2017
Losing my ability to work and earn a living was terrible. Becoming paralyzed and wheelchair-bound was horrible. Losing my ability to eat was a tough pill to swallow, literally. But losing my ability to speak is by far the most difficult aspect of this cruel disease called ALS.
I haven’t been able to speak with my God-given voice for almost twenty years so it might seem strange that I am writing about the power of the spoken word. As one who can only speak through my computer’s Text-to-Speech program, I have become more and more observant of the words of others. For good or for bad, the words we speak are powerful.
“Death and life are in the power of the tongue…” (Proverbs 18:21)
Studies claim that men speak around seven thousand words a day and women speak a whopping twenty thousand words – in just one day. Mary is my caregiver so I might be treading on dangerous ground here, but, from what I’ve observed over the thirty-three years of marriage, I tend to believe these studies are accurate.
I remember so well when I began to lose my ability to speak. Even though I hadn’t had a drink in twelve years, my voice started to sound like I was drunk. In fact, a police officer pulled me over at 9:30 in the morning and, after speaking with him, he asked if I had been drinking. Because all of the muscles needed to speak became weaker and weaker as the day wore on, by three in the afternoon, I sounded like a really tired drunk. Knowing this, I began to make important phone calls and meet people as early in the day as possible. I also started to choose my words very carefully; I didn’t have the luxury of idle chatter. It was then, two decades ago, that I began to value the ability to speak. Like working, walking, and eating, talking was just one more thing that I took for granted before ALS invaded my life.
“There is one who speaks rashly like the thrusts of a sword, But the tongue of the wise brings healing.” (Proverbs 12:18)
An incredible fact: To create speech, around a hundred different muscles in the chest, neck, jaw, tongue, and lips must work together. Every word or short phrase that is physically spoken is followed by its own unique arrangement of muscle movements. The information necessary for producing a phrase is saved in the speech area of the brain. – Reference.com
“Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen” (Ephesians 4:29)
Imagine what a great world it would be if we only spoke “what is helpful for building others up” and to “benefit those who listen.”
Maybe women do talk more than men, but I wonder what men and women would say, and who we’d speak to, if our ability to speak were limited to just three thousand words a day. At first, there would likely be a lot of quiet dinner tables, but over time I think people would learn to measure their words. I would hope that most of us would learn to save our words for important things, not for gossip and backbiting. I have seen close relationships, even family relationships, ruined by words. And, so many people have been scarred for life from verbal abuse. Maybe we should learn to live as if our speech was limited.
“Everyone must be quick to hear and slow to speak…” (James 1:19)
We might think it’s unfair, but non-Christians judge followers of Christ by the way we speak and the words we use. For example, if you ever want to prove that you are not a follower of Christ, start cursing. This tactic worked great for Peter:
“A little later the bystanders came up and said to Peter, “Surely you too are one of them; for even the way you talk gives you away.” Then he began to curse and swear, “I do not know the man!” And immediately a rooster crowed. And Peter remembered the word which Jesus had said, “Before a rooster crows, you will deny Me three times.” And he went out and wept bitterly.” (Matthew 26:73-75)
The Bible has so much to say about the importance of words. In fact, Jesus said that the words we speak define who we are, and how we’ll ultimately be judged:
“…the mouth speaks out of that which fills the heart. “The good man brings out of his good treasure what is good, and the evil man brings out of his evil treasure what is evil. “But I tell you that every careless word that people speak, they shall give an accounting for it in the day of judgment. “For by your words you will be justified, and by your words, you will be condemned.” (Matthew 12:34-37)
The best use of your ability to speak is making a commitment to follow Christ, just as I did thirty-six years ago. It’s so easy, and you’ll never regret it:
“…if you confess with your mouth Jesus as Lord, and believe in your heart that God raised Him from the dead, you will be saved; for with the heart a person believes, resulting in righteousness, and with the mouth he confesses, resulting in salvation.” (Romans 10:9-10)
Happy New Year!
Yeah, I know I’m late, but I have an excuse.
I spent the last ten days battling a respiratory infection. For someone who lives with only thirty percent of his lungs functioning on a good day, pneumonia and respiratory infections are, putting it lightly, really bad. So, I don’t care what the date on the calendar is, I’m declaring that today is the first day of my year. Those of you who have already broken your New Year resolutions might want to join me in this do-over.
It may be a weird coincidence, but two years ago I spent the first week of the year in the hospital battling a respiratory infection. If you want excitement on New Year’s Eve, just go sit in the ER at a nearby hospital.
As many of you know, I almost lost a battle with pneumonia three months ago. During that battle, I was put on hospice. Being on hospice is great because I no longer have to go to the hospital. So, even though I was just as sick as I was on New Year’s Eve two years ago, I was able to stay in my quiet bedroom.
It might not make sense to an able-bodied person, but even a guy that lives trapped in a completely useless body makes plans for the coming year. On January 1st, I had plans to hit the ground running, figuratively speaking, obviously. But once again I spent the first week of the year sitting on the sidelines. It’s so frustrating to begin the year playing catch up, but I must press on!
“…forgetting what lies behind and reaching forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.” (Philippians 3:13-14)
The context of the above passage is interesting and so powerful. The Apostle Paul is comparing his former life as a highly-respected Pharisee and scholar, to his debasement (in the eyes of the world) as a Christian who spent much of his time in prison. In fact, the first chapter of this book tells us that Paul wrote this while he was “in chains.” It’s so ironic that, before becoming a follower of Christ, Paul would hunt down and imprison Christians, and even oversee their execution, but now he was the one imprisoned for, in his words, “the cause of Christ.”
Suppose that Paul would have sat there in that dark dungeon dwelling on his former life:
- He would look at the rags he was wearing and remember the fine robes he used to wear.
- He would look at the mystery slop in the bowl in front of him and think about the delicious foods he used to enjoy.
- He would look at the hard floor he was sleeping on and think about the comfortable bed that he used to sleep soundly on.
- He would look around the cell at the dark walls and remember the feel of the sun on his face and the beauty of flowering plants as he used to stroll through the gardens of Jerusalem.
I understand the temptation of thinking about how things used to be before ALS imprisoned me in my own body:
- I had a good job that I enjoyed and was earning a good income.
- Mary and I had an active social life and enjoyed fellowship with many close friends.
- I enjoyed being an active father of our two beautiful little daughters.
- I was active in church and enjoyed teaching Sunday school.
- I was able to eat delicious food with my mouth, no feeding tube needed.
- I was able to speak with my own voice, no Text-to-Speech robot voice needed.
- I was able to breathe without the assistance of a breathing machine.
- I was able to operate the remote control for the TV!
Okay, the last bullet point is kind of shallow, but you get the idea. The point I am trying to make is that the life of following Christ is always looking forward. We learn lessons from the past, but we can’t live there in our minds.
Isn’t that living in denial?
It’s not living in denial if Christ and a hope of heaven is your reality. My life’s work is now to spread the message of this reality to others. Even if I were completely healed today, I would continue with this work because it’s what I was called to do. I just didn’t realize it when I was able-bodied.
ALS has taken away so much, but being imprisoned in my body has turned me into the man that God intended me to be. Apart from ALS, I don’t know if I would have ever found that man. It shouldn’t take a horrible trial for us to discover the person that God designed us to be.
In the same chapter as the passage I posted above, Paul calls everything he’s lost as “rubbish:”
“I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish so that I may gain Christ…” (Philippians 3:8)
Hold tightly to lessons learned from your past, and the joyful memories you have. But, let go of guilt, regrets and “baggage” from your past.
Press on with me this year!