Sunday, March 29, 2020

Modeling Bug

A few weeks ago, I made a video about how I do model railroading with my mouth stick. Unfortunately, it somewhat started an itch that I can't scratch.

I have enjoyed trains as long as I can remember and part of the fun is doing model trains. It's to get out by the tracks and go railfanning (watching trains), but weather doesn't always allow it. Therefore, working with small versions of them is the next best thing.

In junior high, my English teacher was also a rail enthusiast. He and I went out to watch trains several times in the summer, but he also formed a train club. A few other boys in my class were in it and we would spend time after school on Fridays putting together model trains that we could beg from our parents.

Mr. Muether was an excellent teacher and he did a great job of making it so I could interact with my classmates more and get to be an early teen. Some of the club's field trips, and rail camping, are fresh in my mind nearly 25 years after they happened.

Dad and I eventually built a train layout in our basement, just below my bedroom. He got the table top made, foam laid down, and tracks arranged with hills and curves. I don't remember how long that took, but the layout hasn't really progressed beyond that now for well over ten years.

Unfortunately, life can get in the way of things you enjoy and would like to do. With dad's busy work schedule and my very limited time up, we have extremely little time to give to our hobby. This current quarantine situation hasn't helped either. I could be in my chair likely by the layout right now instead of writing this. However, with churches doing online services, I have had a busy week helping organize and needed my sitting time to get work done.

Since making the video, I have been watching more model train videos and "window" shopping for items I like online. It's part of living a busy quad life and being sure to help others first. This week, and the next, look like they will still be at home. Maybe I'll get to scratch the modeling itch yet, but time will tell. I'm thankful to be safe at home and healthy and able to stay busy.

Sunday, March 22, 2020

What Will You Answer?

I enjoy reading all of God's Word, but some passages more than others. For the last two nights, I have read one of my favorites, Job 38-41. If you haven't read it lately, or ever, go read it again carefully, slowly, and let each question take time to process. Everyone is home anyway, so it's something constructive to do.

The question most people ask is, "How can a passage in Job be one of your favorites? Isn't the book about a man's suffering?" Yes, it is, but that's not what I enjoy. During Job's interaction with his friends (who are correctly called miserable comforters), he is positive the suffering is unjust and wanted to question God. Job gets that opportunity in these chapters, but only after Job hears 70 of God's quandaries first.

Chapter 38 starts basically quizzing about Genesis 1 with God asking who made the earth and the stars. They continue with asking if Job controls the storehouses of snow, rain, hail, and lightening as God does. Through the following chapters God goes on asking about various animals, describing them very clearly, and who made them. I like the description of an ostrich, that God did not give it much brains, but has blessed it with speed. Other creatures such as the behemoth and Leviathan are not familiar to us today, but looking in the fossil record and ancient accounts of animals reveals likely candidates for these amazing creations.

When Job responds to God's inquires, he puts his hand over his mouth and realizes how great is the Lord. Job repents in dust and ashes and to our knowledge, did not get a response as to the reason for his testing.

Living the quad life, and during times of trouble, it's common to hear people ask that if God is in control, how could this or that tragedy happen. The short answer is that we live in a fallen world where tragedies are permitted (such as Luke 13:1-5). However, other possibilities also exist due to judgment (Deuteronomy 28:58-63 sounds very familiar to today).

Like Job, each and every one of us will be questioned by God upon our death, whether you believe in Him or not. At that time, every idle word and action we have done in life will be reviewed. At that time, what will your answer be? All we can do, like Job, is repent and trust in Jesus alone to cover our sins.

Sunday, March 15, 2020

Proper Corona Perspective

The saying goes that when it rains, it pours. However, I think this week has been closer to a hurricane in comparison.

Picture from LA Times
Unless you live under a rock, and probably even then, you are likely well aware of all the coronavirus news. Basically within a week, much of the country has shut down with severely limiting flights from over seas, closing Disney World, schools, churches, ending sports seasons, and much more. People have hoarded supplies, such as toilet paper, in order to stay inside their homes and not spread infection.

Taking precautions is not a bad thing, we need to care for the bodies we have while living in a fallen world. I'm limiting my outings and trying to avoid crowds. However, we also need to attempt to keep a clear mind and look at the full picture. At this point at least, the number of people with coronavirus, and related deaths, is much fewer than the flu and other illnesses. Also, no matter what we do for preventing illness, we have no ultimate say in it.

Isaiah 45:7 says in part, "...I make peace and create calamity; I, the Lord, do all these things." We need to remember that in every situation, God is in control. In my nightly Bible reading, I started with Job earlier this week and again see how God allowed suffering as a test. We also need to keep in mind that at some point through some way, (sickness, injury, or accident) everyone is going to die.

Statistics say over 151,000 people die around the world every 24 hours. God tells us it is appointed once for a person to die, and then face judgment. Only those that have truly repented of their sins and trust alone in Jesus' saving grace alone (not based on works or good deeds) will receive eternal life. For those that haven't, they can only look forward to eternal suffering, worse than anything experienced in life.

Whether it's soon or in several weeks, or months, the coronavirus pandemic will pass. After that, life will likely get back to normal. Until then, use this time as a reminder how quickly life can change. Don't wait until you're sick or suffering from some disease to come to God. Let today be the day of salvation and look forward to a new heaven and earth where there will no longer be any death or suffering.

Sunday, March 8, 2020

Fuzzy Was He

In November, I thought it would be fun to try the no-shave November. When the month ended, I decided to give a beard a try for a while, that time has ended.

For four months, I grew out my beard, but trimmed a few times to keep it under control. I liked it, but it also got annoying. I have dry, and oily, skin that likes to flake a lot. Even with washing my face frequently, my fury chin kept the flakes captured. The controls on my chair looked like someone had splattered white paint on them when I was up for a while and dark shirts resembled a snowy field.

With my mouth currently feeling okay and warm weather approaching, it was time to free my chin again. Now, it feels nice and smooth on my lip again and I no longer feel like I'm eating hair. It's also much more comfortable on my pillow at night and I can once again grab things between my lip and chin, like the bed sheet, and move it.


Looking in the mirror, bearded Joel reminded me of Abraham Lincoln with a shorter face. I did somewhat get used to the furry look, but I think I prefer the clean cut much better. It was a fun experiment, but I don't believe I'll be repeating it soon. However, if (or when) I have a painful mouth again, it may get a few day's growth.

Also with the quad life, I was starting to get concerned about hair around my trach button. We generally clean around it multiple times a day, but some strands were starting to gather in the area. I can't say I have tried it, but breathing hair into my lungs doesn't sound like a good idea.

This week ahead looks to be starting the busyness of spring already. I will be sure to take enough time to fully shave though before heading out.

Sunday, March 1, 2020

Tooth Trouble round Two

For nearly two years, I have been dealing with a bad tooth. After getting it removed in late June, I have been dealing with a gap in my front teeth. On December 9, I received a metal bracket that would eventually be the anchor for my new hardware. However, I was told I needed to wait three months for it to anchor in the bone first.

In January, I saw my regular dentist for a tooth cleaning and I scheduled appointments to finish my mouth work. The first one, for mapping my mouth, would be in late February with getting the tooth on March 31. This sounded great, but the dentist called to say funding for the implant expired on April 1 and he wanted to have earlier appointments in case of delays.

Therefore, I went in on February 4, less than two months after my bracket installation, to get my teeth mapped for the false tooth. It required a lot of work with the metal, but was eventually complete. Four days later, I noticed the area was much more painful than it had been. However, another quick check at my dentist looked okay.

Due to a cancellation, I was again bumped up from an early March appointment to this past Tuesday to get my tooth back. After messing with it for so long, I was looking forward to receiving the implant and having a full set of teeth again. However, as the false tooth was screwed into place, it was VERY painful. After two rounds of getting it in place, I was finally granted some pain relief.

The last step was to put a tiny torque wrench on the tooth to get it snugged in place. It was at this stage my dentist noticed the metal bracket was turning as well. It wasn't attached to my jaw bone as it should be and the tooth would not install properly. He also couldn't remove the tooth without taking the entire bracket with it.

Instead of being done with this entire process, I now have to start over again. I'm scheduled for an appointment in Iowa City in late March, when I was originally going to get the tooth, to likely have to get another bone graph in my jaw. Six months after that will be another bracket installation and then three more months until I get my tooth, again.

I currently have my false tooth in place, but it doesn't take much to make it sore. I got used to not having it and am considering just going without one. If the quad life wasn't so dependent on mouth use, it would be different, but that's not the case. I will see how God leads me on this path again, but will make sure to give the full waiting time if it comes again.

Sunday, February 23, 2020

Falling Lips

Most days are pretty similar and go as planned. Unfortunately, there are times that quickly make you aware that good times can end without warning.

On February 15, my parents and I had a Valentine's Day party with three of our family. The six of us regularly get together during holidays or just any occasion. I'm the youngest by about 20 years, but we still all have fun together.

After supper, we played a card game that was new to our group called Cover you Assets. My strategy ideas didn't always work, but it was still fun. The evening passed quickly and it was soon time for my night nurse to arrive. Before that though, we needed a group picture with our large sucker lips.

Unfortunately, other priorities came up first and we couldn't get to it before my night nurse came.

Sunday, dad had a sore back due to lifting paper at work and wasn't able to get me in my chair for church. Early Monday morning, February 17, it was my turn to experience unplanned circumstances.

I woke up with my stomach not feeling well and it gradually grew worse. Monday night into Tuesday, I was starting to wonder if I was heading to another hospital stay with a tube in my nose. Thankfully, it started to get better Tuesday night into Wednesday and I was thankful to not have any unscheduled vacations. I'm still not eating much and have been having some problems, but I'm praying they all stop soon.

Living the quad life or not, we need to be prepared for almost anything at any time or location. When something comes, the only thing we can trust is God's is in control and to look to Him. This week will hopefully come closer to normal again, but normal can get boring sometimes.

Sunday, February 16, 2020

35 Years of The Quad Life

We are never guaranteed any time beyond the present. However, assuming I'm still around this coming Thursday, February 20, it will mark 35 years since entering the quad life.

On February 20, 1985, my parents could not have guessed how a simple trip to Des Moines would change their lives as well as mine. As a three-year-old, I was only beginning to understand the world around me and didn't know what terms like vent-dependent or quadriplegic even meant. However, God knew the plans for the life He had given me and provided just the right person to help me breathe at just the right time.

Doctors said I shouldn't go home, and needed to live in a care facility in order to stay healthy. My parents knew differently though and took me back to our house after seven months in the hospital, along with 24/7 nursing care. In the 3.5 decades since then, I have been able to go all through mainstream school from preschool through college and now stay active in various roles.

1985
At the time of injury, my parents were told I had a life expectancy to around age ten. As statistics have changed, I have always already out-lived the new numbers. Currently, the average for my injury level and age say I have about 30 years post-injury. Once again, I am already beyond that, but understand where they come from.

In 2019, three other vent-dependent quads I knew well passed into eternity. Two were kids that were only ten years post-injury and the third was a man in northwest Iowa that was given 30 years. I know a few other men that are just a few years behind me in injury length and two that have been given more time.

2020
Through all these decades, I'm very thankful for the multitude of blessings God has given me. I have loving parents that do an extreme amount for me as well as an abundance of caregivers that have done everything for me. Then there have been places like camp that I was able to spend 22 summers almost forgetting I had any challenges. Further graces such as reliable wheelchairs, transportation, mouth stick use, diaphragm pacemaker, and more than I can list have also greatly helped along the way.

Many challenges have also happened that I sometimes wondered how I could get through. No matter what came, I could always depend on God's plan and everything would work work according to His purposes. It is very true that I look forward to the end of my time in this body, but only when God calls. Until then, I look forward to serving in whatever time remains and trying to help others in this life of SCI.