Author Archives: Bill Sweeney
Thinking About Death
When I was a kid, I had a friend I’ll call “Bubba.” (There were no kids called Bubba where I grew up so I figure that’s a safe name to go with). Bubba was a high-maintenance friend that never called before coming over and always seemed to show up at my house when I was in the middle of doing something important, like watching Gilligan’s Island. He was hyper and never stopped jabbering on about stuff I wasn’t the least bit interested in. No matter how disinterested I acted, he would stay for hours and would even invite himself to dinner. To my immature and selfish mind, Bubba was annoying.
Before becoming a follower of Christ, I viewed thoughts and discussions about death much like I viewed Bubba knocking at my door – an unwelcome annoyance. After becoming a follower of Christ and coming to believe that my eternity in heaven was secured, I basically put the issue of death on a shelf thinking that one day, when I was old and gray, I would have to take it down, dust it off and deal with it. Even as a Christian, I still viewed death as “Bubba.” I never thought that welcoming death into my thoughts and prayers every day would be one of the best decisions of my life.
Old age, tragic accidents and horrible illnesses remind us that invincibility (in these bodies) is a 
myth; we are deceiving ourselves. ALS jolted me out of that denial comfort zone and forced me to face death head on and it’s been the most life-transforming experience. I hope to convince others that thinking about death on a daily basis is good for us emotionally and spiritually. This is the exact opposite of what I believed before ALS invaded my life.
“…we had the sentence of death within ourselves so that we would not trust in ourselves, but in God who raises the dead…” (1 Corinthians 1:9)
A few months ago I read an article that listed the top 5 regrets of the dying. They are as follows:
I wish I’d had the courage to live a life true to myself, not the life others expected of me.
I wish I hadn’t worked so hard.
I wish I’d had the courage to express my feelings.
I wish I had stayed in touch with friends (Bubba, where are you?)
I wish that I had let myself be happier.
I suppose everyone’s list of deathbed regrets would vary from the above list, but in truth we’ll only have one regret on our deathbed: “I wish that I hadn’t lived in denial that this day would come.” All of our regrets grow out of denial about our death. One would think, as I once thought, that thinking about our death, putting ourselves on our deathbed, every day would be depressing, but I’ve discovered that the opposite is true.
Like me, Ebenezer Scrooge wasn’t changed by reflecting on his past or even by discovering how others viewed him; he was only transformed when he came to terms with his own mortality. Obviously “A Christmas Carol” is not based on the Bible, but I believe Dickens got that part right.
“…that I may know Him and the power of His resurrection and the fellowship of His sufferings, being conformed to His death…forgetting what lies behind and reaching forward to what lies ahead…” (Philippians 3)
We rightly associate Easter with life, but Jesus’ whole mission was about defeating death. He had to face death before He could defeat it and so must we.
The Importance of Purpose
In my last post I wrote that my eye-tracking computer crashed and I was without a computer for three weeks. I also mentioned that MDA was nice enough to lend me the computer I’m now using until I can obtain a replacement. As I said, I am very thankful to MDA for lending equipment and for everything else they do. This isn’t a complaint, it’s just a statement of fact; like me, this computer is old and extremely slow. It is so slow that technical support recommended that I not add any programs (I am typing this post as an email because I thought adding Microsoft Word might kill the computer). So having to learn the new system and having many other limitations has challenged my patience.
For “normal” people, having a broken computer for any period of time would be an inconvenience. But imagine how much more inconvenient that would be if you didn’t have a smart phone or access to any other computer. Now imagine that you’re bound and gagged and for three weeks the only thing you could do was listen to audio books or watch TV. That pretty much describes what my time without a computer was like.
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My nephew, Patrick, using his communication deviceI know that the technology revolution has brought about many negatives for society. The Internet and smart phones have turned many people into social misfits. Even among family and friends, many people now retreat into their own little world of texting or playing games on their phones. But technology has been a true blessing for those with physical and/or mental challenges – people like me and my Autistic nephew.
Since ALS began to paralyze me, I gradually began spending more and more time on the computer. After it became impossible for me to use a standard computer (16 years ago), I discovered software that would allow me to control the computer using a “head mouse.” It is a little box with a beam of light that tracked a mirror-like sticker attached to the front of a cap I would wear. I could move the cursor and type by simply making slight head movements. This system worked well for about four years until my neck started getting too weak to hold my big head up. I was so determined to make it work that I bought a neck brace and, if I had Mary adjust the brace just right, I could still make slight head movements. That worked alright until one day my chin slipped off the front of the brace and I almost choked to death.
It was then that I discovered eye-tracking computers. Instead of a beam of light following a sticker on my cap, eye-tracking computers have a camera that follows eye movements – no neck brace needed! After getting used to using the eye-tracking computer, I was able to use my computer to read the Bible and books, listen to audio books or music, type emails and surf the web, etc. I gradually felt confident enough to volunteer as an Internet Missionary with Global Media Outreach. Then I started this blog.
Even after all these years of using this technology, it still amazes me that we are living in a day when a completely paralyzed person, someone that cannot even speak, can still text and email family and friends and communicate with people all over the world. I appreciate this technology so much more after going three weeks without it. I am really looking forward to getting my new computer so I’ll be able to once again type in Word, read the Bible/books, work with with Global Media Outreach and everything else I was able to do with my other computer.
I had a lot of time to think over those three boring weeks. I realized that, other than a few days of being sick or in the hospital, I’ve never really watched daytime TV and I now know that I wasn’t missing anything. After a while, the TV became more annoying than my mother-in-law’s white noise machine!
My whole adult life, even with the extreme fatigue of ALS, I’ve always been an early riser. I envied people who could sleep-in and take naps. During the time I was without a computer, one of the first things I realized was that I’ve always gotten out of bed early because I had a purpose for doing so. If I was just going to listen to an audio book or watch TV, I could do that from the comfort of my bed. I began losing my desire to even get out of bed and became kind of depressed.
Over the years I’ve learned to look for the lessons in every challenge I face, and this challenge taught me about the importance of purpose. Ilearned that a lack of purpose, or not being able to fulfill your purpose, is a big cause of depression. I also believe that God has a purpose for everyone, even for the “least of us.”
Purpose: the feeling of being determined to do or achieve something: the aim or goal of a person: what a person is trying to do, become, etc.
In 1 Corinthians chapter 12, Paul uses the human body as an analogy for the body of Christ (the Church): “But now God has placed the members, each one of them, in the body, just as He desired…there are many members, but one body…the members of the body which seem to be weaker are necessary…” (1 Corinthians 12:18-22). That is so encouraging to “weaker” members like me.
Our purpose doesn’t have to be great, by man’s standards, but I don’t believe it’s possible to live with joy, peace and hope without feeling like you’re giving others a reason to have joy, peace and hope. God’s purposes for us always involve the betterment of others. If you don’t know God’s purpose for you, begin helping and encouraging others. Ultimately this is His purpose for all of us.
Another Lesson in Patience
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Patience: the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
For those of you that might not know, I use a special computer that tracks my eye movements. I have been using this type of computer for about the last ten years and have learned to do virtually everything a “normal” person can do (with a computer:-). But about a month ago my computer crashed.
Unfortunately the company that made the software I have been using for 10+ years was bought by a larger company that did away with the software. I am now having to learn a completely new system and it has been a real challenge, but it’s a challenge that I’m determined to conquer.
This is why I have been so slow in replying to blog comments and email… I was without a computer for three weeks and the computer I’m using now is a loaner from MDA (I am so thankful for MDA). I am in the process of ordering a new computer, but it’s a slow process.
I hope to get back to blogging soon.
What Are You Seeking?
I follow a Bible reading plan every year, and the plan I’m following this year begins with John’s Gospel. I’ve always thought it was much more than a coincidence that the first words spoken by Jesus (in John’s Gospel) come in the form of a very profound question; it’s a question that everyone should know the answer to:
“What are you seeking? (John 1:38)
When I read that question on January 1st, I paused to think about what I should be seeking this year. I believe that our New Year’s Resolutions, or lack of, tell a lot about what we’re seeking. The following is a list of the top ten New Year’s Resolutions for 2014. Other than showing that we smoke too much, spend too much, sit too much and eat too much, what does this list tell us about the American people?
- Lose weight.
- Improve finances.
- Exercise more.
- Get a new/better job.
- Eat healthier.
- Manage stress better.
- Quit smoking.
- Improve a relationship.
- Quit procrastinating.
- Set aside time for yourself.
Besides being obsessed with our bodies and being guilt-ridden over repeatedly doing the things we don’t like, it seems to me that we’re focused on treating symptoms instead of the disease. I think all of these resolutions are good, but notice that none of the top 10 resolutions are in any way spiritual. Maybe that’s why only around ten percent of those that make resolutions succeed in keeping them. And of that ten percent that succeeds at conquering a habit or addiction, a large percentage of those will simply replace that habit or addiction with an equally destructive behavior. It seems that we’re trying, and mostly failing, to fight the flesh with the flesh.
Jesus and the Apostles tell us that we should be seeking the things which
lead to peace. Not “world peace,” but our inner-peace. I’m not a psychiatrist or an addiction counselor, but it seems to me that a lack of inner-peace is at least partially, if not mostly, to blame for the majority of our bad habits, addictions, bad attitudes and other negative behaviors.
“For the mind set on the flesh is death, but the mind set on the Spirit is life and peace…” “So then we pursue the things which make for peace and the building up of one another.” (Romans 8:6 & 14:19)
I haven’t yet perfected this inner-peace thing, but I’ve come a long way over the last ten or fifteen years. I’ve discovered that seeking peace through doing things like reading the Bible, prayer, listening to sermons and having like-minded friends, including blog friends, will greatly increase our sense of peace. If our primary focus is on seeking peace—the Prince of peace, we make Christ our partner in overcoming addictions and bad habits and bad attitudes.
“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.” (Philippians 4:6-7)
Even if you’ve already broken your resolutions, reset your priorities and start over again. Make seeking peace your number one goal and it will increase your joy and hope and give you the strength to conquer your “demons.”
“Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit.” (Romans 15:13)
Thankful
When I was diagnosed with ALS in 1996, at the age of 36, the Neurologist’s prognosis was that I probably would not live to see my 40th birthday. Our girls were only seven and four years old at that time.
Lauren, Leah and me about the time I was diagnosed
I naturally thought of everything I would miss; like high school and college graduations, interrogating their dates, giving them away on their wedding day and the birth of my grandchildren.
I am so thankful that the Neurologist’s prediction was wrong:
I’ve lived to see both of our daughters graduate from high school and college.
I gave Lauren away on her wedding day two years ago.
Lauren and James
And last week I became a Grandfather!
Lauren and Jude
Because heaven is our ultimate future and Christ is our hope, the following verse is true for all Christians – even those of us that are facing difficult trials and those who’ve gone on to their ultimate future at an early age:
“For I know the plans that I have for you,’ declares the LORD, “plans for welfare and not for calamity to give you a future and a hope.” (Jeremiah 29:11)
Unshakable Hope 