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).
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.
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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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)