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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)

Pressing On

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!

Just Imagine

I saw the movie, “I Can Only Imagine” the other night. It’s a great biographical story about salvation and forgiveness. Writing movie reviews is not my thing, but I highly recommend this movie.

After seeing the movie, I began thinking about the title of the song and the movie, “I Can Only Imagine. Bart Millard, the man who wrote the song and the one that the movie is about, was imagining his dad in heaven as he was writing the song.

I started thinking about the imagination, especially when it comes to heaven and eternity.

What is the imagination?

(It’s) “the ability to form a mental image of something that is not perceived through the five senses. It is the ability of the mind to build mental scenes…”

The imaginary realm is not just the stuff of kids; for good or for evil, our imagination is a powerful force. For Christians, the renewing of the mind (Romans 12:2) also refocuses our imagination and we begin to see God’s vision for man and the whole of His creation.

Being wheelchair-bound, hooked up to a pump that feeds me, and not being able to speak for the last 20+ years, I use my imagination much more than I did before ALS invaded my life. Even my vacations are imaginary, lived out vicariously through family and friends, or through Rick Steves on PBS.

Before making a commitment to follow Christ at the age of twenty-three, the rare times I even thought about heaven, the picture in my mind was bleak. Back then, I wasn’t sure that I even believed in heaven. But, to the extent that my spiritually confused mind could imagine a heaven, I pictured it as an ethereal place where disembodied spirits were floating around aimlessly.

Can I sign you up? No thanks.


After making a commitment to follow Christ, I, like all Christians (I hope), began reading the Bible regularly and a much different picture of heaven, the true picture of heaven, was formed in my reborn imagination.

Just imagine this exciting place – a very real place:

Disembodied spirits floating around aimlessly? No way!

Don’t believe most of what well-meaning people tell you at the funeral of a loved one; God did not “need another angel. But, Jesus tells us that we will “be like the angels.” And, we’ll be (physically) like Jesus Himself after He was resurrected from the dead (Matthew 22:30 & 1 John 3:2).

What were the bodies of the angels like when they visited earth? And, what was Jesus’s body like when He appeared to more than five hundred people after His resurrection?

If you said they looked like men, you’re right.

The Bible tells us that we wouldn’t know the difference between men and angels even if they were our house guests (Hebrews 13:2). (I suspect that I’ve been married to an angel for 32 years).

Just imagine a body that defies the laws of physics. A body that can appear and disappear in a blink of the eye, but a body that can eat real food and drink wine (Luke 24:36-43 & Mark 14:25). I’ll have to take it slow because I haven’t had wine or any drink containing alcohol in over thirty-two years – a champagne toast on our wedding day.

Just imagine a heaven on earth. A lot of people, even many Christians, don’t realize that the permanent heaven will be on a “new earth. (Isaiah 65:17, 2 Peter 3:13, Revelation 21:1).

Just imagine no more sickness, no more cancer, ALS or any other stinkin’ disease. No more heartbreaking St. Jude and Shriners commercials! No more need for feeding tubes and wheelchairs! (Isaiah 35:5-6 & Revelation 21).

“I saw a new heaven (earth’s atmosphere) and a new earth; for the first heaven and the first earth passed away…And I saw the holy city, new Jerusalem, coming down out of heaven from God, made ready as a bride adorned for her husband. And I heard a loud voice from the throne, saying, “Behold, the tabernacle of God is among men, and He will dwell among them, and they shall be His people, and God Himself will be among them, and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.” And He who sits on the throne said, “Behold, I am making all things new.” And He said, “Write, for these words are faithful and true.” Then He said to me, “It is done. I am the Alpha and the Omega, the beginning and the end. I will give to the one who thirsts from the spring of the water of life without cost. “He who overcomes will inherit these things, and I will be his God and he will be My son.” (Revelation 21)

After reading this, you might be asking, Bill, if you really believe this, why don’t you stop using your breathing machine and remove your feeding tube and move on to this beautiful heaven you’re talking about?

It’s a fair and logical question.

Believe me, there have been days, really bad days, days when pneumonia left me gasping for air. Days when my whole body was aching from the flu. Many days when I’ve wanted to die, even prayed to die, but…

I recovered…

And, I remembered that God still has a mission for me here. Like all followers of Christ, my mission is The Great Commission; persuading others, maybe even you, to join me in heaven for eternity.

Can I sign you up?

“No eye has seen, no ear has heard, no heart has imagined, what God has prepared for those who love Him.” (1 Corinthians 2:9). 

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.

Living Like You’re Dead

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,
Bill
picture credit: https://jaytharding.com/