Author Archives: Bill Sweeney

Looking In The Mirror

I have a confession to make – I’m a mess!

I was reminded of this yesterday morning after Mary set me in my wheelchair.

As I mentioned before, my neck muscles are too weak to hold my head up. When getting me set up on the computer, Mary places a pillow behind my head and reclines the wheelchair so I can comfortably look at the screen without my head falling. ALS is such a hassle!

If I wanted to see myself in a mirror, I’d have to ask her to park me in front of the mirror. I don’t do that. Not only because I cannot speak to ask her this, but also because I have no interest in doing so. I don’t need another reminder of what twenty-three years with ALS and fifty-nine years living in this harsh environment we call earth has done to my face.

After Mary sets me in the wheelchair, she turns on my computer then attaches it to the wheelchair. The support bars that secure the computer to the wheelchair hold the screen about eighteen inches from my face. Yesterday morning, however, she attached the computer but forgot to turn it on. In the early morning light coming in from the open blinds, the blank computer screen was like a mirror fixed directly in front of my face.

“I’m a mess,” I thought, as I stared at the man reflected on the black screen. It’s funny, though, one of the first things I noticed is that Mary had my hair brushed perfectly. I laughed about this because we were not expecting company and I normally don’t see myself. She could leave me with Albert Einstein’s hair, and I wouldn’t even know. Mary does the right thing even when nobody notices.

“Integrity is doing the right thing, even when no one is watching.” – C.S. Lewis

As I continued to look at the weathered face in the reflection, I thought about how depressing my life would be if I focused on my appearance. Even more so if my joy and satisfaction depended on the trappings of this world like wealth, nice cars and material things, and good food. Although, now that I think about it, a tender steak sounds really good right now.

“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).

Friends, I know all too well that trials are difficult. If you are going through a difficult time, allow God to shift your focus from the visible and temporary things to the invisible and eternal things. God’s word is the mirror of our soul. Spend time in this mirror every day. It will change your life for the better.

After five minutes of contemplating my existence, Mary realized that she forgot to turn the computer on and hit the power button and dashed off to do laundry or something. Another face, a face painted by an eight-year-old girl being raised by atheist parents, soon appeared on my screen:

“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 by the Spirit of the Lord.” (2 Corinthians 3:18).

Back On Track!

Hello, friends,

I’ve been ill for the last week, but I feel much better today and thought I’d write a short post. It feels so good to feel good!

Since my last post, ” Pressing On,” I’ve been trying hard to do just that. Before getting sick last Friday, most weekdays, I’ve been writing ten hours a day. However, typing with an Eye-tracking computer is so slooooow. ALS is such a frustrating disease! Just when you think it cannot get more frustrating, it does.

With ALS, you get muscle twitches. For whatever reason, tiny gremlins under the skin seem to take turns twitching. I can see and feel these twitches, but over the twenty-three years of dealing with them, they’ve become a relatively minor annoyance.

Until Monday morning, when my left eye muscles began twitching – and lasted four days!

In case you don’t understand how a paralyzed and a voiceless person like me can communicate, I have a special and costly computer. This computer has a camera on the bottom, which tracks my eye movements. It works just like a standard computer mouse, except it automatically clicks on whatever I look at. I have my click rate set at less than a second. Using an on-screen keyboard is how I “talk,” and it’s how I am typing this post right now.

You can now see why one of my eye muscles twitching was such a frustrating problem. I look at T, my eye muscles twitch, and the computer clicks on the Y. I was typing gibberish. More than usual. It was maddening!

With my latest illness and weird eye twitch behind me, I am able to laugh about it.

I’m ready to get back to pressing on!

Even when life is hard, God is good!

“Let your eyes look directly ahead And let your gaze be fixed straight in front of you.” (Proverbs 4:25).

Pressing On

Happy New Year!

I believe 2020 will be a great year.

Regular readers of my blog know that I’ve had ALS for twenty-three years. I’ve been on hospice for the last fifteen months, and in that time, I’ve had three close encounters with death. I don’t mean to make light of this, but I think you could say that I have one foot in the grave, and the other is on a banana peel. Knowing this, and reading that I’ve declared that 2020 is going to be a great year, you might be questioning the state of my mental health. I get it, but please hear me out.

I’ll admit that my mental health is not as good as it once was. I recently watched a movie for twenty minutes before realizing I’d seen it before. I don’t know if this is related to the ALS or just getting old. Regardless, I have total recall when it comes to the suffering that Mary and I have endured throughout this protracted trial. If the new year holds more suffering for me, bring it on! I am putting suffering on notice – you will not steal my peace, joy, and hope! If suffering results in my death this year, suffering still loses:

“For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.” (Romans 8:18).

I’ve made plans and goals for the new year – I’m pressing on!

“Whatever things were gain to me (my health, career, my ability to breathe on my own, eat and speak, and walk…), those things I have counted as loss for the sake of Christ. More than that, 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 3:7-8).

I feel sorry for those who have all of their hopes invested in the things of this world. I hope and pray that my simple posts might draw them to Christ, and the Unshakable Hope that comes along with making a commitment to follow Him. That would be a great bonus for the time and effort I spend pecking out these posts on my eye-tracking computer. However, I feel called to encourage those going through difficult times. I think these are the people who can relate to my posts. I’m rededicating myself to this calling for 2020.

It’s kind of funny, but, in a sense, I feel that my body, which was perfectly healthy for the first thirty-six years of my life, has since been betraying me. I realize, of course, this isn’t the case, but I allow myself to believe this to motivate me. It’s payback time now – I’m going to punish this body by using every bit of the strength and energy left in it! The common sports metaphor for this is “leaving it all on the field.” I was on the swim team in high school, so in my case, it would be leaving it all in the pool. The Apostle Paul liked to use sports metaphors. In 1st Corinthians chapter 9, he compares the Christian life to running a race. Being very familiar with Greece, he was likely referring to the Olympics. He tells us to make our body “our slave” and “run in such a way that you may win.” Notice that in the following passage, Paul uses the phrase “press on” two times:

“Not that I have already obtained it or have already become perfect, but I press on so that I may lay hold of that for which also I was laid hold of by Christ Jesus. Brethren, I do not regard myself as having laid hold of it yet; but one thing I do: 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 3:12-14).

I hope you’ll join me in “forgetting what lies behind” “press on” to what lies ahead.

Happy New Year!

Christmas Memories

I feel sorry for adults who don’t have good childhood memories of Christmastime. For good or bad, I think we view our adult Christmases through the eyes of the little girl or boy living inside of us. 

I’m thankful that I have good childhood memories of Christmas. Mary and I tried to make good Christmas memories for our daughters. Now that our girls are grown up, we try to make good Christmas memories for our three grandchildren. That little boy inside of me is excited that our three grandchildren will be with us this Christmas. With having ALS for the last twenty-three years, the adult me is thankful for being alive this Christmas.

I used to enjoy putting up the Christmas tree and other decorations with my siblings when we were kids. I especially liked setting up the nativity. We were not very careful decorating the tree; ornaments were broken, and tinsel was thrown randomly in clumps. But, even when we were little, we were always careful setting up the nativity. Before we understood the Bible’s depiction of the first Christmas, we seemed to know that the nativity set represented something special, something sacred. I think about that old nativity set when I read the following passage every Christmas:

“…(Mary) gave birth to her firstborn son; and she wrapped Him in cloths, and laid Him in a manger, because there was no room for them in the inn. In the same region there were some shepherds staying out in the fields and keeping watch over their flock by night. And an angel of the Lord suddenly stood before them, and the glory of the Lord shone around them; and they were terribly frightened. But the angel said to them, “Do not be afraid; for behold, I bring you good news of great joy which will be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord.” (Luke 2:7-11).

Christmas is all about hope. The day Jesus was born, hope was born. 

Without grace, there is no hope. Apart from Christ, there is no grace.

“For the law was given through Moses, but grace and truth came through Jesus Christ.” (John 1:17).

Merry Christmas, family and friends!

You Have To Laugh :-)

As I wrote in my post last Thursday, Thanksgiving Day, I have been very ill. To be honest, I was praying for this long journey with ALS to end that night. I was looking forward to getting further along than I did in my near-death experience that I told you about in my last post. It’s funny to me now, but I was even giving God suggestions on how to take me out, “maybe a heart attack or an aneurysm…” My prayers might have been answered if it wasn’t for you people praying that I’d get better.

“Do not let your heart be troubled; believe in God, believe also in Me. “In My Father’s house are many dwelling places; if it were not so, I would have told you; for I go to prepare a place for you. “If I go and prepare a place for you, I will come again and receive you to Myself, that where I am, there you may be also.” (John 14:1-3)

I know it’s hard to believe in this enlightened age, but I believe I am going to that place one day, maybe one day soon. However, your prayers are obviously more powerful than mine so I began getting much better after posting on Thanksgiving. By Sunday, I was breathing and feeling much better.

Then, an attack I never saw coming!

Mary has a very detailed routine for getting me ready for bed. This routine takes about thirty minutes if everything goes according to plan. Well, Monday night didn’t exactly go according to plan.

For many years I’ve had a bad case of TMJ. Because of this, I have worn a mouthguard on my top teeth to keep me from clinching when I sleep. The dentists have told me I have the worst case of TMJ they’ve seen. I would crack and crush my mouth guards. They finally made me one out of new stronger material, and they used extra material to make it twice as thick as a standard mouthguard.

Back to my story: Monday night, Mary put my mouthguard in, but it slipped off and began wandering around my mouth and quickly disappeared down my throat! Mary went into panic mode and started sticking fingers in my mouth. I didn’t do it on purpose, but I bit down on Mary’s fingers, and, of course, she screamed like a woman giving birth to a ten-pound baby.

She then put on a big leather glove and tried again, but I clamped down on fingers again. I suppose it’s a reflex reaction. The leather gloves didn’t help, she screamed loudly again. The mouth guard was so far back in my throat that Mary couldn’t even see it. She finally called 911, and eight minutes later, an ambulance pulled in the driveway, followed by a fire truck parked in the street. Before I knew it, six men were surrounding my bed, and two began fishing around in my mouth. I only bit one of them.

They couldn’t see the mouthguard either and began asking Mary if she was sure that it was in there. They were talking about intubating me and transporting me to the hospital. I gave Mary “the look,” and she told the guys that I have a Do Not Resuscitate order. I did not want to be intubated or be transported to the hospital.

We were at an impasse, they couldn’t fish the mouthguard from my throat, and I refused to go to the hospital. As I was lying there with the mouth guard mostly blocking my ability to breathe, I found the whole situation kind of funny. I’ve had ALS for twenty-three years, and I’ve been through numerous painful falls, several cases of horrible pneumonia and flu, and so much else. Now, my mouth guard is going to take me out? I know it’s dark humor, but it is funny in an ironic kind of way.

Obviously, I’m still alive. One of EMTs put my head back up, and when he did, the mouth guard dislodged and popped foreword. I looked at one of the guys, and it’s as if he was able to read my mind. He asked for a tool and slowly opened my mouth and retrieved the blood-covered mouthguard from the back of my mouth. Needless to say, I didn’t wear my mouth guard last night and will never wear it again.

I’m hoping to be able to sleep like Mary’s eighty-seven-year-old mom, who lives with us. She slept through Mary’s blood-curdling screams and, even though her bedroom is at the front of the house, she never heard the sirens or the commotion.

Thank you so much for your prayers!

“Blessed are you who weep now, for you shall laugh.” (Luke 6:21).