Author Archives: Bill Sweeney
The Man In The Mirror
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.
Then I look in the mirror…
“…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.
http://www.imdb.com/title/tt0037988/
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.
A Dispatch From My Cave
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:
Psalm 142
“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.
TGIF
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.
The Will To Live
I almost made it through a whole year without being hospitalized or having any additional health problems. Almost. Then, with just a few days left in 2016, I caught a cold. The “common cold” is not much more than an annoyance for otherwise healthy people, but for someone like me with weakened breathing muscles and only 30% of my lungs functioning, the common cold is much more than an annoyance.
On the morning of the last day of the year, I was having an extremely difficult time breathing even wearing my breathing mask. In addition to that, I couldn’t keep anything down. I was a mess, more than usual. Mary and I both assumed it was pneumonia again so she called 911 and within minutes we were in an ambulance en route to the hospital. ALS has brought us one adventure after another over the last 20 years.
We waited in a small emergency room for twelve hours while waiting for a room to open so I could be admitted. It was during this time that I began thinking about the will to live. I was thinking, “if I didn’t have a sense that God still had a purpose for even a broken down mess like me or if I was an atheist or adhered to some other fatalistic worldview, I would have wanted a doctor to give me a shot that would have ended this suffering. It was as if my opposition to euthanasia was being tested.
If you are convinced you’re going to heaven, where the Bible says there will be no more pain, suffering and tears…, why continue to go on fighting to live?
Apart from the fact that the Bible teaches that life, including our own life, isn’t ours to take, it’s a very logical question; a question I’ve pondered at length over the last 20 years.
It’s a question that really confuses atheists.
Years ago I was watching a Barbara Walters special on heaven. She interviewed representatives of many different faiths to get their take on the after life. For some reason her last interview was with an atheist. I remember so vividly the closing sentence of this atheist: (If we believed in a heaven) “we’d all be killing ourselves now.”
But the reverse puzzles me: if atheists believe that this short life is all that there is, why do studies on assisted suicide show that atheists are the most likely to choose that option when facing a terminal illness?
Last year, Mary and I watched a movie titled “Me Before You.” It was a fictional “love story” about a wealthy self-centered 33 year old playboy in England that becomes a quadriplegic after a tragic accident. He’s obviously depressed and becomes a recluse in his parents mansion. He begins researching assisted suicide and finds a beautiful facility in Switzerland that provides “death with dignity” for wealthy people from all over the world (unfortunately, this facility really exists).
I’m obviously not a movie reviewer so let me wrap this summary up: his pretty young caregiver convinces him to travel to many exotic locations and they fall in love, but he still goes through with his plan to end their travels at the Switzerland death clinic. Not a very happy ending.
While watching this “love story,” my mind began to wander. I began thinking about a woman I admire so much. Fifty years ago, this woman was a beautiful and carefree 17 year old swimming with friends in the Chesapeake Bay. She dove into shallow water and hit bottom. This tragic accident resulted in her becoming a quadriplegic, virtually the exact same injury as the man depicted in the movie. Like him, she became depressed, reclusive and also had suicidal thoughts, but…
Joni Eareckson Tada had made a commitment to follow Christ three years earlier while attending a Christian summer camp. It was a renewal of this commitment and the support of family and friends that gave her life new purpose. For 50 years she’s been serving others all over the world while confined to a wheelchair. She shares the Gospel on TV and radio, hosts summer camps for mentally and physically disabled youth and, a ministry that is so needed, she provides wheelchairs to the disabled in third-world countries, like the boy below in Haiti. Her ministry has given away over 150,000 wheelchairs so far.
It’s really amazing what God can do with broken (humbled) vessels, regardless of our physical state. This year, give God permission to use you – this is the ultimate expression of His gift of a freewill. We are Christ’s hands to help a hurting world.
And, as the Apostle Paul wrote, when we’re done fulfilling God’s purpose for us in this life, it gets so much better:
“For me, to live is Christ and to die is gain.” (Philippians 1:21)
No matter how depressed you might be over your current circumstances, please don’t give up, your story doesn’t have to have a sad ending.
“Therefore we do not lose heart (don’t give up). Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” (2 Corinthians 4:16)
Becoming Humble
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1It’s been 20 years since I was diagnosed with ALS, and I’d like to share some of the lessons I’ve learned over these long and difficult years.
The strange thing about being taught lessons from difficult circumstances is that you have no idea that you’re being taught a lesson at the time. This was the case with my learning about humility. Unlike learning lessons from books or teachers, experiences, especially really difficult experiences, teach us lessons that we never forget. These lessons literally become a part of us.
“Experience: that most brutal of teachers. But you learn, my God do you learn.” – CS Lewis
I don’t remember giving it a lot of thought at the time, but I suppose that I considered myself to be a fairly humble guy before being diagnosed with ALS. I now know that I didn’t even understand what true humility was back then. I am still learning.
Like taking several different classes in school, trials teach us many lessons at the the same time. Some people call this “The school of hard knocks.” But the other lessons are much easier to learn if you first learn the lesson of humility. Humble people are teachable people.
My first lesson in humility.
It’s funny to think about now, but I fought so hard to keep from having to use a wheelchair back when I first began stumbling and falling. I vividly remember it taking me like fifteen minutes to walk into church using a walker. I never looked behind me as I was creeping along, but I now picture myself leading a long line of very patient churchgoers walking at my same tortoise-like pace. I’m sure they were asking themselves, why doesn’t this guy just use a wheelchair? (Mary was probably asking herself the same question as she walked alongside me).
I’d like to claim that my refusal to use a wheelchair for so long was me fighting against the ravages of this horrible disease. That was mostly true, but it was partly old-fashioned pride. There was a part of me, the worst part of me, that simply didn’t want to be viewed as a crippled person. (Like I was fooling anyone). I know that sounds shallow, but it’s the truth.
If you ever want to test your level of humility, go shopping at the mall in a wheelchair.
I was reading the Bible every day, going to church and doing all the things “good Christians” do; I had been a follower of Christ for many years, yet I still wasn’t truly humble. I now know that being humble, just like being proud, is a choice. Choosing to be humble is a choice that even the healthiest and wealthiest can and should make. Difficult trials force us to choose one or the other. (If humility wasn’t a choice, God wouldn’t have told us to “humble ourselves” as He does throughout the Bible).
“Every Christian has a choice between being humble or being humbled” – Charles Spurgeon
Trials chip away at our pride like a sculptor chiseling away at a rough block of limestone. The difference between a block of stone and a human being is that the block of stone doesn’t have a freewill. The silent choices we make, especially when going through a difficult time, play a big part in determining what the Sculptor will make us into.
Fighting against the process of being humbled is a miserable way to live, especially when you’re dying.
I’m not saying that we should give in to the trial, that’s the last thing we should do. I refuse to allow ALS to take me down without a fight. As of last week I’ve been battling this monster for 20 years and, even though this disease has knocked me down (literally and figuratively) more times than I can count, I still choose not to give up.
Regardless of what our trial might be, we cannot fight alone. We need the help of others and we especially need God’s assistance. Whether it’s for salvation or coping with life’s many difficulties, God’s assistance comes in the form of His grace (favor, goodwill, loving-kindness…).
The Bible tells us that God (only) gives His grace to the humble (James 4:6). It’s not that He doesn’t want to give grace to the proud, it’s just that the proud refuse His grace. Pride is by definition self-reliance, an illusion that keeps God and others at a comfortable distance.
Whether or not you’re going through a difficult time right now, humble yourself and your humility combined with God’s grace, will help you in good times and bad.
Unshakable Hope 