I’ve been ill for the last week, but I feel much better today and thought I’d write a short post. It feels so good to feel good!
Since my last post, ” Pressing On,” I’ve been trying hard to do just that. Before getting sick last Friday, most weekdays, I’ve been writing ten hours a day. However, typing with an Eye-tracking computer is so slooooow. ALS is such a frustrating disease! Just when you think it cannot get more frustrating, it does.
With ALS, you get muscle twitches. For whatever reason, tiny gremlins under the skin seem to take turns twitching. I can see and feel these twitches, but over the twenty-three years of dealing with them, they’ve become a relatively minor annoyance.
Until Monday morning, when my left eye muscles began twitching – and lasted four days!
In case you don’t understand how a paralyzed and a voiceless person like me can communicate, I have a special and costly computer. This computer has a camera on the bottom, which tracks my eye movements. It works just like a standard computer mouse, except it automatically clicks on whatever I look at. I have my click rate set at less than a second. Using an on-screen keyboard is how I “talk,” and it’s how I am typing this post right now.
You can now see why one of my eye muscles twitching was such a frustrating problem. I look at T, my eye muscles twitch, and the computer clicks on the Y. I was typing gibberish. More than usual. It was maddening!
With my latest illness and weird eye twitch behind me, I am able to laugh about it.
I’m ready to get back to pressing on!
Even when life is hard, God is good!
“Let your eyes look directly ahead And let your gaze be fixed straight in front of you.” (Proverbs 4:25).
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.
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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