Author Archives: Bill Sweeney
The public is panicking over this Coronavirus. Sporting events have been canceled, churches are vacant, and grocery shelves are all but empty. Many people in America are in fear of contracting this virus, so they’re hunkering down at home.
Having overcome the fear of death, contracting the virus is way down on the list of my concerns. However, I can relate to the fear of going out in public.
My name is Bill, and I am agoraphobic.
Agoraphobia: Extreme or irrational fear of entering open or crowded places, of leaving one’s own home, or of being in places from which escape is difficult.
“Why are you afraid, you men of little faith?” (Matthew 8:26).
In other posts, I’ve told you that I call our bedroom “the cave.” The eye-tracking computer I use works best in dimly lit rooms, so I keep the lights off. The blinds on the door to the back patio are open, but that’s usually the only light in the room. It’s a climate-controlled and otherwise comfortable cave, but it’s still a cave. I am very thankful for creature comforts. As of this month, I’ve spent twenty years in this cave.
“We can confidently say, ‘The Lord is my helper; I will not fear…'” (Hebrews 13:6).
I once thought agoraphobia was something people claimed to have because they wanted to stay home and binge-watch Netflix. Not really, but I just couldn’t imagine why an able-bodied person would have a fear of public spaces. I do understand, all too well, the fear of public spaces for the physically and mentally disabled, especially those with autism like my nephew. I get sensory overload.
“The LORD is my light and my salvation; Whom shall I fear?” (Psalm 27:1).
The last twenty years in my cave staring at a computer screen for twelve hours a day has taken a toll on my eyes. My vision has become increasingly blurry over the last few years. I knew that I needed to go to the eye doctor, but that meant public spaces. And not just any public space. The eye doctor we’ve gone to for years now works at the Walmart Vision Center. His former practice was in a small strip center with a handicap parking space fifteen feet from the door. That was okay, but a busy Walmart is a scary place for someone with agoraphobia.
“When I am afraid, I will trust in You. In God, whose word I praise, in God I trust; I will not be afraid.” (Psalm 56:3-4).
It’s so ironic that I’ve developed a fear of public spaces because at the time I was diagnosed with ALS twenty-three years ago, I was a Regional Sales Manager in the grocery business. I spent many of my days visiting grocery stores, including Walmart stores, throughout Texas, and the other five states in my region.
“I sought the Lord, and He heard me, and delivered me from all my fears.” (Psalm 34:4).
My last trip to a public space was two years ago when I had to have surgery to remove a growth on the lower eyelid of my left eye. Ouch! The surgeon had what he removed tested, and it turned out to be basil cell carcinoma. I had to go back for him to remove more. Now I have a similar bump on the lower eyelid of my right eye. My trips in public are so exciting.
“Why are you in despair, O my soul? And why have you become disturbed within me? Hope in God, for I shall again praise Him For the help of His presence.” (Psalm 42:5).
My fear of public spaces is not just a product of my imagination. I have had some horrible things happen when we’ve ventured out in the past. I’ve mentioned some of these in other posts. Like the time our van’s wheelchair lift decided to break when I was three feet off the ground – in the pouring rain! I am thankful for the first responders that rescued me at that time and a few other times. We had the wheelchair lift repaired and it works great, but I’m still a little nervous about using it.
After a year of Mary prodding me, I finally relented and agreed to see the eye doctor (no pun intended). I still cringed when she told me that she made an appointment. In the days leading up to the appointment, I became nervous just thinking about going. Because I’m so high maintenance, Sharlene, the part-time caregiver I’ve had for almost thirteen years, went with us to the appointment last Friday.
Everything went fine. None of the things I feared materialized. Isn’t that the way it is with most of our fears?
Fear is such a powerful force. It’s a bully that robs us of sleep and puts stress on virtually every other aspect of our lives – if we permit it to do so.
We can’t allow fear to control our lives. If we want to replace fear with hope, we have to be careful, especially in these dark days, of what we see and hear. The news and zombie apocalypse shows will not give you hope. Instead:
“Fix your thoughts on what is true and honorable and right. Think about things that are pure and lovely and admirable. Think about things that are excellent and worthy of praise. Keep putting into practice all you learned from me and heard from me and saw me doing, and the God of peace will be with you.” (Philippians 4:8-9).
We must also surround ourselves with hope-filled people. Mary and I have had our hope strengthened, and our fears diminished by hopeful followers of Christ, including our blogging friends.
We are living in difficult times. If you’re looking for hope, Unshakable Hope, apart from Christ, I don’t have any advice for you. If you are not a follower of Christ, I am hoping and praying that you will commit to following Him today.
“Do not be anxious about anything, 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 understanding, will guard your hearts and your minds in Christ Jesus.” (Philippians 4:6-7).
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).
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).
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!
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!