The Marker

I still read physical books, the "outdated" type that require shelves and manually turning pages. I prefer them over digital and know they'll be around even if a hard drive crashes. For most people, reading actual books requires a marker so they can know where to start reading again.

Friday, I finished a book that covered about the first 600 years of the Christian church. It was around 400 pages long and I used a small sticky note to mark my progress over the past several weeks. It often ends up that the note's sticky section stops sticking when I complete a book. It's easy to recycle and get a new one for my next literary adventure. However, I have one marker that has outlasted any other and continues to adapt.

In high school, I started reading a chapter of the Bible most nights. Over 20 years later, it has progressed to multiple chapters every night with (currently) reading commentary as well. I have changed Bibles once in this time, but I have continued using one simple marker to note my progress.

I'm not sure exactly when I got it, but it's just a scrap piece of paper torn off of a larger notepad forgotten long ago. As I go through God's Word, the folds of pages adjust along with the crack between each side. My marker folds and adapts as I move along, conforming itself at needed. When I complete another time through Scripture, a crease has developed that fits well into Revelation. Going back to Genesis requires some reforming, but it adapts within a day or two.

Through the years, as I complete each night's study, I carefully place my marker into its new position. Sometimes, as sleep battles to close my eyes, I don't get it quite stuffed in it's location. Gravity takes over and it drops to my table, or bed. In an attempt to do everything as independent as possible, I carefully work to get it back toward it's roost, with the smooth side facing in, and firmly push it in. My caregiver sits about ten feet away and could gladly help, but I only ask as a last resort.

I've tried other markers, but they are often too stiff and plastic to adapt and allow me to get it in place. Therefore, my trusty marker keeps diligently working every night, noting my progress and where to start again. It's a small part of the quad life, but one that has become important and a practice in independence.

38 Years

John 5:5-6, 14: Now a certain man was there who had an infirmity thirty-eight years. When Jesus saw him lying there, and knew that he already had been in that condition a long time, He said to him, “Do you want to be made well?” … Afterward Jesus found him in the temple, and said to him, “See, you have been made well. Sin no more, lest a worse thing come upon you.” 

In John 5, we read an encounter between Jesus and a man who was lying by the pool of Bethesda. He had lived with an infirmity of some type for 38 years. When Jesus asked if he wanted to be healed, the man said he couldn’t get in the water fast enough to be cured.

Jesus simply told him to get up, pick up his bed, and walk. In an instant, without practicing faith, asking Jesus for help, or any action on the invalid’s part, he was healed. Later on, after the Jews reprimanded the man for carrying hit mat, Jesus found him again. This time, Jesus pointed out that being able-bodied again was not a big concern, but something worse would happen if he continued in sin.

Tomorrow, February 20, marks 38 years since becoming a quadriplegic. In these decades, I have experienced many trials and times that the future looked bleak. However, living in the present day, I have had many blessings of modern medical technology, wheelchairs, breathing aides, hospital beds with air mattresses, medicine for various needs, and a multitude of caregivers.

At the time of this account in Scripture, I can only guess what living conditions this man experienced. A few accounts of other invalids talk about being carried around on mats, without wheelchairs to get around. Daily tasks such as bathing, changing clothes, and more may have been luxuries that people with disabilities may not have experienced very often. In other words, living conditions would have likely been miserable, but they could be worse.

Many passages in the Bible warn about the conditions of hell; weeping, gnashing of teeth, worm that never dies, and eternal torment that never decreases. Looking at this, we can see that even the worst living conditions on earth are nothing compared to what will come for those who die in their sins.

Some people may think that living with an infirmity gets a person a free pass into heaven, maybe like Lazarus who begged at the rich man’s gate. However, that is not the case as every person will bow to God and give an account of their life. Examining my own life, I know very well that I have broken all of God’s commands and deserve eternal punishment. However, I war against temptation and put my faith and trust in Jesus alone for forgiveness.

With every passing year, and day, I agree with Paul when he said, “For to me, to live is Christ, and to die is gain.” (Philippians 1:21) I look forward to leaving this life of temptation, the difficulties of living with a significant disability, and seeing the increasing burden to my family. However, I can still serve Christ and His kingdom with the gifts He has given me and I will try to do so as long as I am given the ability. 

I do not know what another day, or year, will ring forth, but I know it will be according to God’s plan. I pray that I remember to rely on Him whatever may come and tell others all that Christ has done.

Scheduling and Thinking

Sometimes, I get ideas of various things I would like to do, and then think about how to manage time. Then real-world time and activities, not just those in my head, also get the same issues, if they happen.

As most years around this time, I get the spring itch to be out and active again. Iowa has had some warm (for February) days and seeing clear skies and sun especially makes me want to be out. I have contacted several of my regular elementary school visits and have two on my calendars. Two more have expressed interest, and one that I have been visiting for many years hasn't responded. Friday, I also mailed one of the college classes I normally see in spring to look at scheduling.

All this sounds like good progress to an active spring, but then I remind myself that only a third of potential places are actually confirmed. With every calendar spot filled, it also makes other additions harder to place. I knew this would be an issue, but my caregiver schedule is also a challenge to work with. Compared to 2022, this year is much better with nursing coverage. I am very thankful for this, but I only get one full day per week to use.

Not all of my caregivers are comfortable with driving me, or allowed by our vehicle insurance. Therefore, two of my three daytime helpers mean I can't schedule outings on their shifts. That leaves Tuesday afternoons, Thursday mornings, and all of Friday available to schedule. My one caregiver that drives also continues to recover from brain surgery in 2021 and gets tired easily. Due to this, I try not to schedule anything two days in a row. School visits are one item, I also need to start looking more at getting doctor's appointments made and working with their constraints.

Living the quad life has challenges from multiple directions, but I am extremely thankful God has blessed me with the ability to get out and be active. Whatever He allows me to do, that is what will happen.

Editing Again, but Slowly

According to my computer, I started working on writing my autobiography in November 2018. It feels like I started before that, but it maybe just seems longer than I think. At any case, I have been working on writing and editing it for a few years. Early last month, after shopping for self-publishers, I sent my work to a publisher. This week, she gave it back with the first round of edits.

When I started college, I was told I would need to learn to use voice dictation software because my papers would be too long for me to write by stick. I think I attempted using the software for about two weeks before admitting defeat and using my trusty mouth stick. Even though it spanned a few years, I was thankful to be able to write all 300+ pages of this book with my regular tools. Unfortunately, I can see already that editing will be a harder process.

I can use a keyboard for several hours in various positions without having much of an issue. However, operating the mouse takes more pressure and precise movement. These actions make my mouth sore quickly and I avoid as much mouse work as I can. I have learned several keyboard shortcuts for my regular tasks, but it's not always an option. Book editing is one of those times keyboard alone doesn't work.

The copy I received used something called track changes. Word documents any changes someone made to a document and then another person can accept, reject, the adjustments or make more. Unfortunately, every change requires at least one mouse click and often more. Since receiving the edited version three days ago, I have covered 28 of 311 pages and my mouth was telling me to slow down after the first day.

Living the quad life, I have many items I need assistance with. The little I can do independently, like run a computer, I make sure to do on my own. Now I'm debating to take a very slow process to do everything on my own, delaying publication, or ask for some help. I will likely take another week or two decide on some type of hybrid compromise. It's my own fault for not asking for an alternative editing option, but I have no idea what that would be.

I'm used to doing tasks slower than my peers, so this won't be any different. I do look forward to completing this project though, however long it may take.