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)
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!
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