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/
Can you imagine going a whole month without seeing yourself in a mirror?
If you’re a follower of my blog, you know that I’ve had ALS for almost 21 years, and that I’m totally paralyzed and home-bound. In addition to an excellent nurse visiting me once a month to confirm that I’m still alive, a very nice lady also comes to our home once a month to cut my hair. She came the other day to cut my hair so Mary maneuvered my wheelchair into the bathroom in front of the dreaded mirror (mirrors don’t lie). “Who is that guy with gray hair and big bags under his eyes?” I asked myself.
You see, unless I ask Mary or my caregiver to place me in front of the mirror, which, for obvious reasons, I rarely do, haircut time is the only time I have to face this 56 year old man in a wheelchair (a really disturbing experience).
In some ways, my journey with ALS almost seems like a bad dream, a really long bad dream, even more so when I don’t see myself in the mirror for long periods of time.
Except for the constant reminders of the wheelchair I’m sitting on and the eye-tracking (Look Ma, no hands) computer I’m using, I could close my eyes and almost imagine that I am still the healthy 36 year old man that I was before being diagnosed with this stinkin’ disease.
“…we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.” (2 Corinthians 4:16-18)
Can you imagine someone picking out the clothes you wear every day – for 20 years? On occasion, when we’re having company, Mary will bring out three shirts and ask me which one I’d like to wear. But, other than those rare occasions, Mary or Sharlene, my caregiver and good friend for the last ten years, pick out the clothes I’m going to wear without any input from me.
As I was writing this post, I thought about an old black & white movie I’ve seen, titled “The Picture of Dorian Gray.” It’s about a narcissistic man, Dorian Gray, that, while examining his just-completed portrait, basically makes a pact with the devil that his physical appearance would remain just as it is in the portrait.
Over the period of several years, all of his friends age naturally, but Dorian‘s appearance remains the same as it was the day that he collaborated with evil. However, his now-hidden portrait reflects his soul, and this portrait becomes more hideous with every evil act he commits.
If there was such a thing as a mirror that reflected our soul, what would your reflection look like? (I have probably asked myself this question a thousand times since making a commitment to follow Christ some 35 years ago).
When looking into a mirror, we can see our physical imperfections, but for those who call themselves Christians, the Bible is the mirror of our soul. If we’re open to making changes to our spiritual imperfections (if we have “eyes to see and ears to hear”) the Bible will transform us.
“But prove yourselves doers of the word, and not merely hearers who delude themselves. For if anyone is a hearer of the word and not a doer, he is like a man who looks at his natural face in a mirror; for once he has looked at himself and gone away, he has immediately forgotten what kind of person he was. But one who looks intently at the perfect law, the law of liberty, and abides by it, not having become a forgetful hearer but an effectual doer, this man will be blessed in what he does.”(James1:22-25)
“But we all, with unveiled face, beholding as in a mirror the glory of the Lord, are being transformed into the same image from glory to glory, just as from the Lord, the Spirit.” (2 Corinthians 3:18)
Are you being transformed by the Mirror of your Soul?
If not, I hope and pray you’ll begin doing so today.
I’ve joked for many years that I feel like a caveman. Unfortunately, ALS has turned me into somewhat of a recluse; the weaker I get, the more reclusive I’ve become.
As most of you know, I cannot speak or move. I use an eye-tracking computer to type and “speak.” Light affects the camera tracking my eye movements so I keep it dark in my bedroom, where I spend 95% of my time.
Allow me to paint you a brief picture of this scene: I’m in our large bedroom reclining in my wheelchair. I’m tethered to my breathing machine and a little pump that slowly releases manufactured sustenance into my feeding tube. We have blackout curtains that are usually closed and the only light coming in is from the open blinds of the door leading out to the back patio.
You can see why I’ve nicknamed our bedroom “the cave.”
Most days I’m sitting here on my computer for ten to twelve hours. Technology is an incredible blessing for someone like me. I read the Bible, Kindle books and blog posts. I listen to audio books, sermons and music. I scroll through Facebook, type emails and reply to comments on my blog. And, as I’ve mentioned in previous posts, for about the last seven years I’ve been volunteering as an Online Missionary with Global Media Outreach. Daily I communicate with people from all over the world – all from my little cave.
It feels so good to be unhooked from my machines and just sit in the yard for a few hours, especially when my grand-kids are over like this past weekend.
I don’t mean this to sound like “it’s all good.” ALS stinks! Trials are so difficult even for the strongest of Jesus’s disciples. Even if you are not physically isolated as I am, trials, and the depression that often accompanies that trial, can make you feel as if you’re living alone in a dark cave.
Before he became the King of Israel, David had a death sentence hanging over his head. David’s predecessor, King Saul, and a large group of his most skillful warriors were searching for David in order to kill him. David wrote some of the Psalms during this time, including the following Psalm which he wrote while hiding out in a darkened cave:
“I cry aloud with my voice to the LORD; I make supplication with my voice to the LORD. I pour out my complaint before Him; I declare my trouble before Him. When my spirit was overwhelmed within me, You knew my path. In the way where I walk They have hidden a trap for me. Look to the right and see; For there is no one who regards me; There is no escape for me; No one cares for my soul. I cried out to You, O LORD; I said, “You are my refuge, My portion in the land of the living. “Give heed to my cry, For I am brought very low; Deliver me from my persecutors, For they are too strong for me. “Bring my soul out of prison, So that I may give thanks to Your name; The righteous will surround me, For You will deal bountifully with me.”
The Cave of Adullam, where David wrote the above Psalm. Taken by Ferrell Jenkins
I know the circumstances are different, but it’s so easy to relate to the anguish that David was feeling in the midst of his trials. Sometimes it can actually feel as if the trial is some kind of demonic warrior trying to thwart God’s plan for our life, much like Saul trying to kill David so he wouldn’t become king.
We see this pattern repeated throughout the New Testament; beginning with Satan trying to use temptation, suffering, and finally Jesus’s death in his vain attempt to derail God’s plan for us and our eternity with Christ. This pattern continued with the trials, temptations and ultimately with the martyrdom of all of the Apostles and millions of disciples in every nation on earth over the last two thousand years.
Why did they have to suffer and be martyred?
They dared to obey the final commandment of Jesus; The Great Commission:
“…All authority has been given to Me in heaven and on earth. “Go therefore and make disciples of all the nations, baptizing them in the name of the Father and the Son and the Holy Spirit, teaching them to observe all that I commanded you…” (Matthew 28:18-20).
Regardless of what we’re going through, we should do our best to carry The Great Commission.
I was thinking about this when my friend Heidi asked Mary and me if we would consider being interviewed on a national Christian radio show. Remember, I can’t speak at all and Mary gets nervous just speaking in front of a small group. Oh yeah, I forgot to mention it was live radio.
After a few days of discussing this, Mary and I agreed to do the show. We both concluded that it was worth the risk of making fools out of ourselves if we could encourage even one person that’s going through a trial or maybe give hope to a discouraged caregiver.
If any of you would like to hear our interview with Chris Fabry on Moody Radio click HERE.
Thank you for reading.
This quote came to my mind the other day and I began thinking about it and the man that wrote it. I spent most of February sick or recovering from the flu and other health issues. What little strength and energy I had before the illness has finally returned in the last few days. I’m definitely not physically stronger than I was before the illness. But I do feel spiritually stronger than I was before my battle with “that which did not kill me.”
As an atheist, Nietzsche only believed in the physical world so I can only assume that this quote was referring to trials making people (himself) physically and/or emotionally stronger. I wonder if he still believed those words while lying helpless and suffering from the effects of Syphilis for the last eleven years of his life.
As someone who has relied on caregivers for even longer than Nietzsche had to (ALS, not Syphilis), I empathize with the helpless, the suffering and their caregivers. But I feel great sympathy for those that do not place their hope and strength in Christ, regardless of the state of their health. I feel sympathy because, like Nietzsche, the “strength” and “hope” that they derive from physical/temporal pleasures do not provide genuine and lasting joy or peace. As King Solomon concluded, it’s “all vanity.”
I am convinced that the following is the only strength that can be gained from “that which does not kill us”:
“…we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed (strengthened) day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.” (2 Corinthians 4:16-18)
There are so many great earthly pleasures and blessings, but not even the best of them deserve our hope. If Christ is our hope, the pleasures we enjoy on earth will be so much more enjoyable because we’ll have our priorities in order and we won’t have to rely on the physical/temporal things for happiness.
“For in hope we have been saved, but hope that is seen is not hope; for who hopes for what he already sees? But if we hope for what we do not see, with perseverance we wait eagerly for it.” (Romans 8:24-25)
ALS is a horrible disease that leads to the body becoming totally paralyzed; the once-healthy and self-reliant victims of this killer eventually become forced to rely on a caregiver for all of their needs.
Coming to rely on my caregiver for help was very difficult and humbling. I had always been so independent and hard-working, and I suppose that I believed these qualities would keep me from ever having to rely on a caregiver. But the more familiar I became with my disease, the more I was forced to admit that my self-reliance and good work-ethic were not enough; I had to accept the fact that I couldn’t do it on my own; I needed a caregiver to help me.
One day, I admitted defeat and began accepting help from my caregiver. However, even after all these years my pride still makes it difficult to rely on someone else for assistance. But, day after day, my patient, selfless and devoted caregiver is always willing to help me. I’m so thankful for that!
Although everything I wrote above is true of my wife, Mary, and Sharlene (the woman that helps her care for me), I was not referring to either them. The process of coming to terms with accepting help for my physical needs was very similar to something that occurred in my life 13 years before being diagnosed with ALS. It was then I came to realize that I was spiritually helpless. And, like ALS, my efforts to conquer this eternally fatal disease through my own efforts were completely useless; I needed a full-time caregiver. After thoroughly reviewing the “résumés” of all the candidates for this most important position, I determined that only Jesus Christ was qualified to be my caregiver (my Lord and Savior).
Thankfully I didn’t have to become a theologian to conclude that the most significant difference between Christianity and every other belief-system can be summed-up by just one word – Grace! Every other belief-system is based on human efforts (“works”) to earn eternal life. They might phrase it differently, but the bottom line message is always the same – “Clean yourself up and God might accept you.” Christians are those that have come to realize they’re incapable of cleaning themselves up enough to stand before a Holy God. Like ALS rendering me physically helpless, all of humanity is spiritually helpless and in need of a spiritual caregiver.
Jesus didn’t wait for us to clean up our act before coming to die for us. In fact, He wouldn’t have had to come at all if we were capable of purifying ourselves. The Bible says it was “…while we were yet sinners, Christ died for us.” (Romans 5:8)
Unlike other belief-systems, Christians don’t perform good works hoping to obtain salvation; we do good works because we’ve already obtained salvation.
“For by grace you have been saved through faith; and that not of yourselves, it is the gift of God; not as a result of works, so that no one may boast. For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand so that we would walk in them.” (Ephesians 2:8-10)