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)
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)
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 a–round. 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.
The title of this blog might seem like an oxymoron, but I hope to convince you otherwise.
I have come close to death several times even before ALS entered my life 21 years ago. With each brush with death, the more I am able to identify with death and eternity and live my life accordingly.
You might think that viewing my life as having one foot in the grave and the other on a banana peel would be a depressing way to live, but I’ve discovered just the opposite; it’s a very liberating way to live, at least, from a Christian point of view. I think it’s also the viewpoint that Christ intended us to have.
In the days leading up to Christmas every year, Mary and I always watch “It’s a Wonderful Life” and the 1951 version (the best version) of “A Christmas Carol.” After watching these movies this last Christmas, I was thinking about why I love these two holiday classics. I concluded that it was because, in each of these movies, the central character learns about what’s really important in life after seeing themselves as dead.
Virtually every morning when I wake up, I remind myself that this might be my last day on earth. I am a long way from perfecting this, but I try to let this reality govern every aspect of my life. Before ALS, even though I was a Christian and was supposed to be “eternally minded,” I’m ashamed to admit that I did not always allow my own mortality to influence my daily life. Even back then in 1996 when I was diagnosed, before smartphones, Facebook and so many other distractions and time-wasters, it was so easy to lose focus on the realities of life.
The Apostle Paul said, “I die daily.” (1 Corinthians 15:31). It was miraculous that Paul lived to be an old man. He had come close to death so many times. Even after suffering through numerous trials and brushes with death, Paul lived his life with joy, peace, hope, contentment and so many other spiritual and emotional strengths we all long for. Yet, he seemed to go through a daily exercise of visualizing himself nailed to a cross:
“I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me.” (Galatians 2:20).
Many well-meaning Christians have empathized with me by saying things like “ALS is a heavy cross (for you) to bear…” I’m thankful for everyone who empathizes with my having to go through this horrible trial that has cost me my career, my health and so much more. But this trial is not “my cross to bear.” I took up my cross the 35 years ago when I made a commitment to follow Christ.
“If anyone wishes to come after Me, he must deny himself, and take up his cross daily and follow Me. “For whoever wishes to save his life will lose it, but whoever loses his life for My sake, he is the one who will save it. “For what is a man profited if he gains the whole world, and loses or forfeits his own soul?” (Luke 9:23-25)
In today’s narcissistic “selfie” culture, “Denying yourself” is a tough message to sell. Christianity, true Christianity, has always been a counter-cultural belief system. But in a society where just about anything goes, those who make a commitment to follow Christ, to live like they’re dead, are today’s ultimate rebels.
Buying into this living like you’re dead life will cost you everything you’re holding onto, but the benefits are joy, peace and unshakable hope; hope that will carry you through trials, temptation, and tribulation.
“Set your mind on the things above, not on the things that are on earth. For you have died and your life is hidden with Christ in God.” (Colossians 3:2-3)
Thanks for taking the time to read,
picture credit: https://jaytharding.com/
Even though I cannot eat (by mouth) anymore, I still love the Thanksgiving Holiday. (I no longer have to worry about that gluttony thing).
Over my 21 year journey with this horrible disease called ALS, I’ve become a more grateful person. I also seem to notice ingratitude in myself and in others more than I did before ALS entered my life.
Through my observations, I’ve concluded that ungratefulness and unhappiness go hand-in-hand. Think about it, have you ever known a happy ingrate? Yeah, neither have I.
“The unthankful heart discovers no mercies; but the thankful heart will find, in every hour, some heavenly blessings.” – Henry Ward Beecher
The Bible doesn’t tell us to be happy, which leads me to believe that not even God could teach happiness. However, the Bible repeatedly tells us to be thankful:
“...let the peace that comes from Christ rule in your hearts. For as members of one body you are all called to live in peace. And always be thankful. Let the words of Christ, in all their richness, live in your hearts and make you wise. Use his words to teach and counsel each other. Sing psalms and hymns and spiritual songs to God with thankful hearts. And whatever you do or say, let it be as a representative of the Lord Jesus, all the while giving thanks through him to God the Father.” (Colossians 3:15-17)
I know some people believe that happiness is a choice, but I’m not one of those people. As the above passage shows, we can be intentional about being thankful, and if we succeed in this area, I am convinced that true and lasting joy will follow.
This Thanksgiving Holiday, I will renew my commitment to be more thankful to God for His many blessings and to the family and friends that He’s used to bless us.
I’m especially thankful this Thanksgiving because I’ll get to meet our beautiful new granddaughter, Claire Elizabeth.
Since 1863, when, during the American Civil War, President Abraham Lincoln proclaimed a national day of “Thanksgiving and Praise to our beneficent Father who dwelleth in the Heavens,” to be celebrated on the last Thursday in November.
“Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.” – Melody Beattie