As the followers of my blog know, I’ve had ALS for twenty-two years, I’m completely paralyzed and unable to speak. I use an eye-tracking computer to communicate and I am totally reliant on Mary to take care of me.
I remember when I first started having to rely on others to help me with simple tasks. Even though my body was beginning to fail me and I sounded like a drunk when I spoke, I fought so hard to keep working after being diagnosed. Not just because we needed my income, but also because I just couldn’t imagine not working.
With my job as a Regional Sales Manager, I usually traveled two or three days per week, and usually left for the airport at five in the morning. I remember attending a convention and having to ask a coworker to button my shirt and put on my clip-on tie (I had already given up on adult ties).
On another trip I swung my overnight bag up on the conveyor belt going through security and lost what little balance I had and fell to the floor. Everyone in line just stared at me, until finally a frail elderly security guard helped me up. For most people, this incident would be close to the top of their “Life’s most embarrassing moments” list. For me, after twenty-two years with ALS, it doesn’t even qualify for the top 25. The incident did mark the end of my career, though.
One would think that a person who is completely helpless would have had every last drop of pride wrung out of him. Think again.
Following my last post about Mary being Laid-off from the job she’s had for the last twenty-nine years, and her income being more than double the amount of my monthly disability check… Several readers suggested setting up a Go Fund Me Account. “I’m not going to stand on a virtual street corner with a Go Fund Me placard asking for donations,” I thought.
If even the lame and mute still retain their pride, is anyone truly humble?
Well, my brother did start a Go Fund Me Account for us and one of our daughters is helping him manage it.
I cringed when my brother, daughter, and several followers of my blog suggested that I put a link on my blog to the Go Fund Me Account. This step was even more difficult for me.
I’ve been thinking and praying about this for the last two days. I would never want to give the appearance that I was trying to capitalize on the friendships, so many good friendships, that I’ve built through this Unshakable Hope blog over the last six years.
God reminded me that over the course of this long difficult trial, financially and otherwise, He has blessed us over and over through the hands of others, and that this Go Fund Me Account is an opportunity for Him to bless us again.
(My brother set the fundraising goal without consulting me; I would have set the goal at a million dollars :-))
If you’d like to give, please click HERE. (Thank you so much, my friends).
(Please) “…don’t give reluctantly or in response to pressure. “For God loves a person who gives cheerfully.” (2 Corinthians 9:7)
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
I was thinking about Good Friday when I woke up early yesterday morning. Then I thought about people using the phrase “Thank God It’s Friday” to celebrate the end of a work week and the start of the weekend.
Even though I haven’t worked in over 19 years, I remember that feeling of being so glad a work week was over as I was sitting in bumper-to-bumper traffic on a Friday evening or landing at the airport after being gone all week on a business trip.
Then I thought about the darkest Friday of my life.
After three days of grueling tests, which included cutting muscle samples out of my thigh without any anesthetic and a spinal tap that left me with a debilitating headache for three days, the neurologist, flanked by a group of interns, told to Mary and I that I had ALS. He went on to say that I would continually get weaker, be confined to a wheelchair, lose my ability to speak, and that I would die in three to five years.
That was not a Friday I was thanking God for.
Do you think when the disciples were staring up at Jesus dying on the cross they called that day “Good Friday?”
Yeah, I don’t think so either.
I’m sure there was a lot of confusion and crying on that dark day. Maybe they were like Mary and I on the long drive home from the medical center that Friday evening; not even looking at one another for fear of dissolving into tears.
Like Mary and I, I’m sure they were thinking, “This isn’t the way it was supposed to be.”
To add insult to injury, Jesus and the disciples were surrounded by people that were mocking and celebrating His crucifixion.
For the disciples, this day was anything but TGIF.
Jesus knew differently.
“…for the joy set before Him (Jesus) endured the cross…” (Hebrews 12:2)
It was “for the joy set before Him” that Jesus was able to endure the insults, the flogging, the beatings, and being nailed to the cross.
It wasn’t until Sunday morning that the disciples understood that God’s plan was so much bigger and better than they could have imagined:
“…let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who (like Jesus) for the joy set before Him endured the cross…” (Hebrews 12:1-2)
We can endure the cross we have to bear, no matter how heavy it might be, if we “fix our eyes on Jesus” and focus on “the joy set before us” – eternal life with the One who suffered and died for us.
This does not mean that we have to abandon our hopes and dreams for this life – far from it. God wants to bless us in this life too.
But, making a commitment to follow Christ is the only Unshakable Hope that God offers for this life and the next.
Today is a great day to make this commitment or to renew your commitment.
“Life Goes On”
Whether we’re going through the worst of times or the best of times, history and our own experiences show us that life does go on. This is true, but I don’t recommend saying “life goes on” to someone who is grieving the loss of a loved one.
“There is an appointed time for everything.
And there is a time for every event under heaven —
A time to give birth and a time to die…
A time to weep and a time to laugh;
A time to mourn and a time to dance.” (Ecclesiastes 3:1-4)
I thought about the above passage last week when our daughter gave birth to a beautiful seven pound girl on Wednesday, then a close friend died of cancer on Friday – “A time to give birth and a time to die.”
Those who are grieving and those who are rejoicing have this in common – life goes on for both of them.
It was a beautiful Friday afternoon in 1996 that the neurologist informed me that I had ALS and would likely be dead in three or four years (so much for predictions). I vividly remember driving home that day in stop-and-go traffic. I was exhausted after three long days of examinations so Mary was driving and I spent much of that long drive home staring out the window at the other drivers. I imagined that they were thinking about dinner or maybe they were making plans for the weekend ahead. In the midst of horrible news, when it seems that our life will never be the same, the world seems like such a cold and cruel place when you look around and realize that life goes on just as it always has.
Compared to life’s great highs and lows, day-to-day life can seem so trivial. When we experience the extreme highs and lows, we tell ourselves that we’ll never again settle for the trivial life. But our emotional or spiritual highs and lows gradually find their old balance, and we return to a mundane normalcy. I think this is the root cause of much of the addiction and depression we see around us; “life goes on” is difficult for many people to cope with.
What’s the answer?
Even for someone that’s been paralyzed by a horrible disease and can no longer eat or speak, “life goes on” can be a great message if you truly learn to “Rejoice with those who rejoice, and weep with those who weep.” (Romans 12:15)
I try not to focus on the personal and professional “highs” (or the financial gains) that I’ve missed out on over the last 19 years. Instead, I make a conscious effort to focus on the good things in my life, like our beautiful new granddaughter, and to share in the highs and lows of others. Living vicariously through others is not the life that I envisioned, but years ago I concluded that the only alternative was to throw a pity party and make myself and everyone around me miserable. I’ve been to several pity parties, and I didn’t like the company (me, myself and I) or the hangover of guilt.
Life is hard, but it’s much easier if we surround ourselves with people that won’t only rejoice with us in the good times but will also support us in the difficult times. I’m so thankful that Mary and I have family and friends like this.
For my daughter, her husband, their son and their beautiful baby girl, life goes on.
But the great news is that the friend we lost was a committed follower of Christ so life goes on for him also.
“My sheep hear My voice, and I know them, and they follow Me; and I give eternal life to them, and they will never perish; and no one will snatch them out of My hand.” (John 10:27-28)
“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…” (Revelation 21:4)
Life goes on!