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.

Sunday, February 9, 2020

In It or Part of It?

For someone who can't move the majority of my body, I get bored when I'm just sitting. Therefore, when I get to church on Sunday morning 10-15 minutes before the service, I count everyone.

In 2007-2008, average morning attendance was 198 people in the morning and 135 at the evening service. For 2019, day-time average was 160 and evening was combined with two other churches and came to around 120. For this year, four churches have combined for evening service and numbers don't look much different.

Christians are told to be in the world, but not of the world. We are to be distinctly separate from worldly desires and influence. However, the church in general has not followed this command. When attendance started declining, churches in the Western world tried to become more relevant to attract people.

It started with changing music, getting rid of traditional hymns and singing new songs. Some of these are good, but more often they leave unclear direction with an abundance of repetition and some artists even quite anti-Christian. Changes continued with getting modern buildings that barely resemble churches and name changes that try to mask denomination affiliation and sound trendy.

We are to be good stewards of the gifts we're given and sometimes older, neglected, structures cost more to maintain than start fresh. However, we also need to be careful not to leave something that already works well.

Finally, the church has changed the message of the gospel. To make it friendlier, God's love is preached without telling the consequences of sin and eternal punishment in hell. As a result of all this, Christianity in the western world continues to decrease and we see the results of it in the world around us.

I continue to pray for a return to Christ for the United States and many other countries. Unfortunately, I believe it will get much worse before that comes. No matter what comes, I'm comforted that God is in control and everything works out for those who fear Him.

Sunday, February 2, 2020

Record to Nothing

At every job, certain people tend to always do particularly tasks. This generally works well and results in a good work environment. In the same sense, my caregivers follow the same pattern. Depending on who I have during the day, it will determine that day's activities. It all works out, until someone is gone for an extended period.

My primary day assistant, Joy, works 3-4 days a week. She is comfortable with getting me on the FES bike, driving the van, and helping with videos. Her counterpart prefers to stay around the house and do other tasks, so I generally stay in bed and do computer related activities.

On January 23, Joy worked her regular day and I did a session on my bike. I set a new record of my legs peddling without motorized assistance for one minute and 38 seconds. I also burned 0.2 calories per hour instead of my frequent 0.1. At that rate, I could eat one bite of ice cream once a week!

Unfortunately, Joy wasn't feeling well the next day, and I opted to skip biking to give her a calmer shift. The illness continued though and she wasn't able to work all last week. That meant other than church on Sunday, I stayed in bed every day. Joy called Friday that she is starting to feel better, but her mother is very ill and possibly near the end of her time on earth. Joy understandably wants to be with her mom, so will be gone at least this week as well. That means another week of trying to reschedule any planned outings and seeing if my other day assistant can take extra time.

Living the quad life means I am completely dependent on others for help. When someone is missing, regular activities get missed and everyone feels the change. I've noticed an increase in my muscle spasms with not getting to bike, but hope I won't need to increase meds again. Times like this make me wish I had another backup person that could help me and allow my parents to do there regular routine.

For this coming week, I pray that everything will work out well with schedule changes. Hopefully everything will return to normal soon, but I will keep seeing what God has planned for the near future.

Sunday, January 26, 2020

Finding more Archives

Unfortunately, the last few weekends have been cold and snowy in Iowa. I had caregivers scheduled so that my parents could get away for a full day, but they ended up staying in town. Therefore, since I had day help, it allowed for cleaning in the basement.

I'm quite certain most households have items that end up getting stored and forgotten about. I know I have posted on a few previous cleaning excursions, but the stuff just keeps bubbling up. After a few hours of work, I was soon given some bags and boxes to sort through.

One of the items was my old Toshiba laptop. I remember getting it in 4th grade and wondering what to do with it. Throughout junior high, it became a well used resource to help write papers and the 8th grade project of an autobiography. For a short time, it was equipped with a straw that I would sip or puff on to make dots and dashes for Morse code. A string of eight dots and dashes produced a single period at the end of a sentence. I quickly returned to using the keyboard and mouth stick to type with much less effort.

This machine was well before modern Windows' operating system and required a code to start it. After more than 20 years, I can't begin to remember what it was or now what to do with it. I was always interested in all the screws showing, so I see an electronic experiment in my future.

Other finds in this round of cleaning produced high school graduation gifts from 2000 and more trinkets I don't remember in the first place. If I keep working on my book, some of these finds do help me recall that time period and what was happening.

In this quad life, I'm thankful for all the tools God has provided for me so I can participate in the world around me. Some had more function than others, but they were all a part of some occasion. Now, a few items can go on to be used by other households while others may collect dust a little longer. No matter what comes this week, I am thankful for every item I've received and their various functions.

Sunday, January 19, 2020

Less is Good, Maybe

In my sophomore year of high school, I started having a lot of trouble with muscle spasms (or stretching as I said). After talking with my doctor, I started taking medication to help reduce the stiffness and be able to function. It very quickly increased from one dose a day to four until I was on the maximum allowed amount.

About a decade later, I was having trouble with pressure sores and very strong spasms even with the pharmaceutical assistance. I was started on an additional medication that also eventually increased to four times a day and the maximum allowed dose. It has now been over ten years with the schedule of two meds, four times a day, to control my muscles. Even with this, I still had a lot of trouble with stiffness and being able to function.

Prepared for cold temps
Since November, I have had a lot less trouble with my limbs stretching and everything getting stiff. Therefore, I reduced one of my anti-spasm medications by once a day to see what happens. It has now been a couple weeks since the change and I'm not having any trouble. I'm hoping to stop another daily dose in February if everything goes well. The real question is though, why have they improved?

In 2019, my three pressure sores have been greatly improving. They didn't get any worse at camp and have continued to look good (as good as holes in your skin look). My primary day assistant says she has noticed the decrease in spasms since around June and thinks it may be due to decreased pain from skin issues.

Footwear still causes an increase in problems, but I have primarily been able to stay barefoot this fall and early winter due to mild conditions. Along with that, I have also been able to get on my exercise bike more often which also helps reduce stiffness. However, little to no muscle spasms can also indicate something is wrong in my body and has coincided with hospital stays.

Living the quad life can be a guessing game sometimes. Even if it's just one pill a day, I'm thankful to be able to decrease my medications and also side effects. I'm praying my caregiver is correct with the cause of the improvement, but time will tell. No matter what, I am thankful for at least the current change and pray it continues moving forward. I will see what another week with much colder temperatures brings.

Sunday, January 12, 2020

Trusting in 2020

Living the quad life, I have to have a lot of trust in those that help me with my every day activities. That's especially true when it comes to doing anything with my breathing.

My diaphragm pacemaker has a port on the right side of my chest. A small plastic bracket sits securely in a dressing that's near my ribs. Unfortunately, it gets bumped on occasion and everything pops out of place. For my regular caregivers, most can get it back in place within a few seconds. However, my new night assistant has accidentally pulled it out three times this month already.

In order to get the plastic bracket in place, the wire for my pacemaker needs to be unplugged. Therefore, I don't get stimulated to breathe during this process. There is a bit of a trick to getting it back in place, and he is learning quickly, but it does still take a couple minutes. I am able to somewhat breathe on my own, but winter congestion makes it a challenge and during these learning experiences, I need to trust God's hand through my caregiver.

On Thursday, I needed to pick a few things from Wal-Mart and got out on the record setting high day to run errands. When I returned to the parking lot, I waited to get in the van while my assistant loaded my purchases in the vehicle. Wondering around the van, I saw a minivan parked near us that had a wheelchair ramp.

The ramp was down, with the van's doors open, packages on the back seat, and nobody around. We thought this way an odd situation, but further investigating confirmed no one was in the vehicle. My assistant and I got in my van, but didn't feel right just leaving the other vehicle, that also had a purse in it. After sitting for another 20 minutes, the minivan's owner finally rolled up and into her van. She didn't act surprised it was still open, but I guess just trusted nothing would be touched. As we sat waiting, few people noticed it, but two other nearby occupied cars seemed to be doing the same thing we were.

Some people are concerned what will happen in 2020 in the political arena as well as world relations. They are appropriate concerns, but we need to remember God is in control of all things. I will be watching as events unfold this year, but trusting in God's plan will be my main thought, even if everything seems to be going wrong. I pray that my readers here will as well and see what another week will bring.

Sunday, January 5, 2020

Looking at 2019 Results

Now that 2019 has come to a close, I wandered how I did with social media reach. It was the first year I tried both blogging and vlogging (video version of this). I somewhat knew what I would find, but was still surprised.

Since you are reading this (hopefully), I'll start with blog statistics. The top five most viewed 2019 posts were:

Reaping what is Sown: 51

Most of these blog entries receive around 20 or more views, like the picture shows. It is a little lower than I would like, but it does well enough. I know my weekly musings aren't that interesting, so it's what I would expect. What really surprised me though, were the numbers on my vlog.

With just one year and no advertising (not that I promote this very often either), I still had some high view counts. The top five videos from the year were:



Looking at these numbers, I'm much more popular with my strange looks and voice rather than just typing. Apparently a lot of people are also interested in what I do to get up every day.
I have been given many years in the quad life, and I am glad to help educate anyone or help others living in similar circumstances. Those are my main goals with these ventures and I have had a few comments saying what I've shown, or written, are helpful.

With another year, I don't know what God has planned for this life. Whatever comes though, I pray I can spread the gospel and help others through life along the way. Thank you for my readers as well for coming by regularly to see what has gone on each week.