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Breathing And Other Luxuries

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.

Still Living In Hope!

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 eternallyminded.

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

Hang In There!

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)

What Are You Talking About?

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)

Someone Polluted Our Gene Pool :-)

By Bill

Because we can trace our mother’s and father’s families back to Ireland, my nine siblings and I have always assumed that we were 100% Irish, but…

About a year ago a few of my siblings decided to get their DNA tested. I don’t know how accurate this DNA testing is, but the tests showed that we are only 95% Irish, give or take 1%. Somehow, maybe hundreds of years ago, our gene pool was corrupted, or, likely enhanced, by 5%. Apparently, the relationship between the Irish and the English wasn’t always strained; in fact, it seems that the relationship was quite good for two of my ancestors.

It’s kind of fun to think about the possible scenarios of how and when our ancestor’s blood became mixed with another family’s DNA. I told my brother that it was probably a golfer from London who came over to Ireland to play around. Or, maybe my great, great, great grandmother traveled to England and got a job as a chambermaid for a wealthy family and ended up marrying a member of the household staff.

Regardless of how our ancestors got together, these two are probably to blame for my rebellious nature, and I’m pretty sure this is where I get my sense of adventure from. Living with ALS for 21+ years is quite an adventure, but I wouldn’t recommend it.

As I’ve mentioned in past blog posts, I have been an Online Missionary with Global Media Outreach since 2010. Like here on my blog, I have met and become friends with Christians all over the world; Africa, Europe, China, Iran… I don’t like to admit that I’m geographically-challenged, but I’ve even connected with people from tiny remote islands that I had to Google to find the location of.

As I am writing this, I’m thinking about two men that I disciple and communicate with regularly. These two men have become friends of mine. Their names are Claude, from Burundi (that’s in East Africa for my fellow geographically-challenged readers), and Biruk, from Ethiopia. Biruk is living in Japan right now finishing up a Masters program. He’s hoping and praying to get accepted into a Ph.D. program in Australia for the next school year.


I’ve never asked, but I’m guessing that, like most native Africans, Claude and Biruk have dark skin, probably several shades darker than my pasty white skin. I’ve never asked about their race because it really doesn’t matter to me. The strange thing is that both of these men address me as “Brother Bill.” They are both relatively new followers of Christ and genuinely believe that we are brothers, spiritually speaking. And, I believe that we are brothers too. Why? Because the New Testament tells us that followers of Christ are brothers and sisters in the eyes of God:

“There was a crowd around Jesus, and someone said, “Your mother and your brothers and sisters are outside, asking for you.” Jesus replied, “Who is my mother? Who are my brothers?” Then he looked at those around him and said, “These are my mother and brothers. Anyone who does God’s will is my brother and sister and mother.” (Mark 3:31-35)

Claude, Biruk and all true followers of Christ are “strangers and exiles on the earth. For those who say such things make it clear that they are seeking a country of their own…they desire a better country, that is, a heavenly one. Therefore God is not ashamed to be called their God; for He has prepared a city for them.” (Hebrews 11;13-16)

I am so looking forward to living in “a country” with no racism, no human trafficking, no murder, no rape, no child abuse or any other form of evil.

No, I am not delusional, I know this place exists, and I hope that one day you’ll be there with me.


“…you are all children of God through faith in Christ Jesus…There is no longer Jew or Gentile, slave or free, male or female. For you are all Christians–you are one in Christ Jesus.” (Galatians 3:26-29)

In a very real sense, Jesus has become the DNA of those who follow Him.