Open Nights and Hot Day

I've wondered what a "normal" life and week would be. Get out of bed under your own power, no need for caregivers, go to work, come home, etc. However, that is not the quad life or what God has given me. This week was a mixed bag of various items.

Tuesday and Wednesday night did not have help. Two various nights a week without help will now be the normal for the foreseeable future. This week meant a very tired start to Thursday and a dentist appointment.

A few weeks ago, it was discovered that I needed a new filling in one tooth. This in itself wasn't a big deal, but my dentist is located in a former house and has limited space I can access. After getting setup in my normal space and letting novacaine take affect, it was discovered some of the equipment wasn't working. Therefore, with a half numb chin, I had to drive to a different room and get setup again. Thankfully, everything went as expected in the second location.

About three hours later, with a partially numb mouth, I had my annual certification to determine if I still need the same nursing care. My care needs have adjusted little in 40 years, but they still need to be checked annually. After assuring I can hear well, but still need complete help for pretty much everything, the assessment was finished. Just like last year, I don't contribute to household cleaning either. Now we wait to see if Iowa thinks I can stay home, which is cheaper for the state, or to lose a good chunk of funding and go to a facility, which ends up costing the state more.

Finally, Friday morning, I got up early and headed out to my first visit of the 2025 Iowa State Fair. My time at the gospel outreach booth went well, but I only had short conversations with visitors and handed out a few gospel tracts. When my caregiver and I left the air-conditioned building, we were abruptly reminded that the afternoon was in a heat warning.

Lunch started off with sharing a new fair food, a scotcheroo shake. The cold tasted good and we quickly emptied the container before remembering to take a picture. Unfortunately, after eating chicken strips, my stomach discomfort I had in the morning returned. We spent about 30 minutes minimally roaming around, but I was ready to get home.

Despite dad's best efforts, the van does not cool off on hot days. By the time I was home, my temp was nearly 102.5° and I was glad to be home. Thankfully, cooling off isn't too hard for me. After 90 minutes without clothes, getting washed down, and having my cooling fan on me, I was back down to a reasonable 98.8°.

My next scheduled day at the fair has possible thunderstorms, but should be much cooler. After preaching tonight, and next week, my calendar is starting to have open days again. I'm thankful for all that God allows me to do and His care through so many people. I don't know what the future may bring, but I'm hoping for a calmer week ahead. 

Vacation Illness

After a six-year break, I took a week-long trip from June 16-20. It started out as a fun time, but ended in a way that we hadn't planned.

For most of my life, vacation has primarily consisted of going to CHAMP Camp. I had seven years as a camper and then volunteered for 16 years as a counselor. I still maintain their website and promote camp whenever possible, but I can no longer endure the physical needs to be a counselor. This year was CHAMP Camp's 35th anniversary and alumni campers and counselors were invited to come on June 17.

Dad wasn't certain the van could handle the trip, but my parents, night caregiver, and I were eventually on familiar roads to Martinsville, IN. The night before we left, I noticed a green creep across my face any time I considered out destination. After allowing my caregiver to sleep a few hours, we drove 15 minutes from the hotel to join everyone for lunch.

I wasn't sure how many people would still be around that I knew, but it felt like returning home. Most of the campers were new, but familiar faces were everywhere. It soon became routine to hear "Joel!" followed by a hug and story telling. It felt very good to generally be welcomed and missed by so many. Mom concluded by the end of Tuesday that I had received more hugs in one day than I had in years. It's a shame more places aren't as excited to have you come.

We stayed as long as we could Tuesday evening before returning to the hotel. About mid-morning Wednesday, the four of us drove further east to the Creation Museum in Petersburg, KY. My first visit to the museum was during Father's Day in 2015. I was excited to see what had changed in ten years, as well as what remained the same. An entirely new entrance had been made that was a fair distance from the main building. It was fine on a clear day like we had, but it would have been a long stroll through rain or snow if weather was different.

Watching weekly updates from the museum, I knew what exhibit changes has been made. I was thankful to see a large section on the sanctity of human life and how a baby develops in the womb. As society continues to advocate for the murder of the unborn, more such displays are needed. The other changes were also fun to see, but the core message stayed the same. Unfortunately, I didn't research enough and we missed the new butterfly house by 15 minutes. However, the multitude of plants in the new greenhouses were fun.

Our final day with activity was Thursday, June 19. Our hotel in Kentucky was between the Creation Museum and Ark Encounter and made for a short morning commute. My first visit to the Ark was in 2018 and I knew a lot had changed. Just like the Museum, a new welcome area greeted us before entering the main attractions. Several buildings have also been added to include a virtual reality tour of the flood and other displays. The displays in the Ark itself were mainly the same, as I assumed they would be, but I almost felt like I missed some of the information I had seen the first time. However, we did get to tour the zoo this time and see the much anticipated zorse and zonkey. Before leaving, our group watched a live show in the new auditorium. Seeing it in person for the first time, I had dreams of serving God by getting to be a speaker and teaching from the stage.

In order for my night caregiver to get rest, we left the hotel late in the morning and returned a little earlier than we would otherwise. However, I think we saw mostly everything and missed out on just a few shows. Thursday night, laying in the hotel room, my lungs started to feel sore and congested. It turned into a souvenir I didn't purchase, but definitely won't forget. That will be on the next entry as it has been a story of its own. 

Earning my Name

When we're born, one of the first things our parents do is give our name. This is what we are know by for our entire life and that name, generally, never changes. As we get older and our personalty, likes, and interests form, we sometimes get a nickname. I have a cousin who goes by "Bubba" and it almost sounds strange to hear his actual name used.

I just normally stick with Joel and don't use a lot of alter personalities. However, I do also get referred to as the "Barefoot Preacher" and, as the address of this blog shows, "trainman" or similar variant. I have never preached while wearing something on my feet, so this name fits as long as I'm able to preach. The second name has been getting neglected for quite a while, making me start to wonder if it still applied to me.

When it comes to trains, I generally enjoy most aspects of the hobby. I like watching trains, doing model trains, discussing rail related topics, and some history as well. However, it is a hobby that is like all others and requires time. For me, it also requires assistance from someone else. 

Dad and I mainly enjoy the same hobby, but he has many different projects vying for his attention nearly simultaneously. As a result, it has been many months since we have done anything on our train layout other than occasional "testing" to see if engine sounds still work. It has been even longer since

Steel Highway's camera showing one of our sightings

we've gone on an official outing with the primary goal of seeing trains. Running errands to nearby towns that have active tracks may result in a train sighting, but not from seeking them. My family spends almost every evening meal with a camera from Virtual Railfan or Steel Highway Railcams in the background, but it isn't the same.

Yesterday, after literal years of hiatus, dad and I finally got to sit beside the rails and wait for trains. He had misplaced something while running errands the day before and retrieving it made a perfect excuse for leaving plenty of time to watch trains. In less than two hours, we saw four trains and part of a fifth we missed due to the classic railfan error of leaving a few minutes too quickly.

It was a cool day, but sitting in the van with the sun on us kept it from becoming too cold. We could have seen the same trains through live camera feeds at home, but it felt good to be out in person again and not have distractions and other interests interrupt.

In the quad life, or any life, it can sometimes be the calm activities that get neglected first, but provide the most benefit. I'm doubtful railfanning will be a frequent occurrence in 2025, but it at least happened once.

Quad Life Entertainment

Living the quad life means I don't get out much for social activities, or even have much of a group of friends. Therefore, I spend a lot of time at home on my computer playing games, at least not when working or reading. I also watch other people play games on a website called Twitch.

Several years ago, I started watching a gamer on YouTube that goes by DerTebbers. As time has elapsed, I also started watching some of his friends that played games I also like. Most of what I play are simulators, such as Farm Sim or a couple different truck driving simulators. A large number of video games involve combat and violence, but I don't do anything with that genre.

On Twitch, I am known as a preacher and comment when God's name is taken in vain or "adult" language is used. It shows you don't need to be physically present to have a Christian influence. In December, I challenged a couple people to try driving a truck with a mouth stick. Only one took it up though, FarmerCurt95. I met him in person last summer and still follow most of his games. Yesterday, he and I drove semi with mouth sticks for all to see.

I was impressed he was willing to try and experiencing a different perspective. Just like I tell grade school kids, doing something with different abilities still accomplishes the same task.

The two-hour stream was fun and I liked getting to spend time with someone other than nurses or family, even though they were still in my room. Curt does not act as a Christian, so I continue to work with him as I can. Learning through the new lens of stick gaming may help.

One thing was made more obvious, I need to work toward a new computer. I've been noticing more age issues, but it was apparent yesterday. Running American Truck Simulator, a chat program, and video recording software was almost too much. That may be a project later this year, but I'll need to research more. Have a great week and I'll see what God has planned.

When Online Meets Reality

For the past few months, I have been going through an online course about expository preaching. I have completed my three book quizzes and observations of the assigned text, but it is now crunch time. I need to write my sermon manuscript and get it evaluated so I can preach it on September 1 for my final assignment and hopefully complete the course successfully.

The weeks have gone by quickly and I am feeling much more stress than usual in preparing this message and covering all the required points. Therefore, for breaks while I'm flat, I have been watching someone who goes by the name "FarmerCurt95." Curt plays various games on the Twitch platform and provides some humor, as well as occasional annoyances. If he or his friends get out of line in their speech, I'm usually the one to point it out and correct them. I have watched Curt, and co-horts, for a few years and we somewhat know each other.

Curt lives in South Dakota, but comes to my area of Iowa for a few days every year to watch sprint-car racing. Last year, we concluded that we should try to meet in person sometime when he came back. Well, that happened on Thursday at a local coffee shop.

Meeting with someone you've only previously known virtually is somewhat fun and awkward at the same time. Most conversations relate to whatever game is being played and offering helpful hints, like slowing down and not running vehicles into objects. Other topics do arise though and the group knows I'm a Christian and quadriplegic with extra standards and challenges.

I was somewhat concerned about what we could discuss in person, but I talked more about my history and heard what Curt and his girlfriend do in their area. I was not silent about faith and gave them a few comical gospel tracts that also present the need for repentance and trusting in God alone. I was prepared for an in-depth conversation, but they took everything well. As this blog comes out, Curt and his group of seven should be heading home.

Living the quad life often means few friends or social interaction. However, utilizing various forms of social media have expanded possibilities. I pray I can continue to be a Christian influence in any circumstance and share enjoyment in some activities. Now, it's time to return to sermon preparations.

Friday Exploration

Another Friday has come and gone, which means further adventures on the roads of southeast Iowa. I have heard many tales, but none too tall, about a few places my parents visit in the tiny towns of Douds and Cantril. I visited them both once before, but they were part of our trip this week.

According to my watch, Douds, IA took just over an hour to reach after leaving home. The town doesn't boast much for tourist attractions except for one restaurant, the Lunch Box Cafe.

Image from Google

The Cafe is only open three days a week and the person who greets you, and takes your order, is Pastor Phil. He has been preaching for 40 years to a small congregation that meets over three miles down a dusty rock road. However, he remembers names and greeted dad, by name, even after a few months away.

Parking by a table in a corner, waiting for our order, I looked around and let my eyes feast on a smorgasbord of signs and nick-knacks. Some had political messages, while others denoted unique events in history. One said that on that spot long ago a one-time event happened in history, a husband won an argument. After dining on our cuisine, and getting acquainted with the Pastor, we headed further east to the Dutchman's Store in Cantril.

It had been about two years since my last visit, but it hadn't changed much and was still a very unique store. Several small shops have been purchased over the years and morphed into one building that now covers an entire block. You can get everything from clothing, fabric supplies, toys, books, and a plethora of grocery items that aren't available elsewhere. The area has a large number of Amish and the store carries merchandise of interest for them as well. We picked up several items on our list, as well as a few extras, before returning west.

Last week Friday, I had an all-day meeting that dad accompanied me to and didn't allow for shopping. Therefore, we stopped at three more stores before finally returning home nearly ten hours after we left. It was a long day of adventure that included two nights (Friday and Saturday) without a nurse. Saturday was a tired day in the quad family life with today not much better. Next time, we have noted to curtail our stops if we head out to locations further away.

Recorded Interview

It has again been a busy week in the quad life with some days making me wonder how to get everything accomplished. One activity this week was not among the ordinary, but is becoming more familiar.

I don't listen to the radio very much. However, some mornings, and when driving to the city, I listen to a Christian radio station in Des Moines, Life 107.1. I don't care for some of the modern Christian music, but I do get a laugh out of two morning show DJ's, Taylor and Jen. They often promote their Saturday morning podcast that features a variety of people that can help listeners in Christian living. I contacted Jen early this year to see if they would be interested in my story and gave her a book. After a lot of schedule planning, I interviewed with them Tuesday afternoon.

Driving to Des Moines, my caregiver and I went through rain that changed to snow, then, ice, slush, and back to rain again. The rapid change in conditions made me wonder if this was what it was like 39 years ago during our accident if I really should be going. Thankfully, we arrived safely at an office building in West Des Moines and found the station's suite.

Interviewing with two people I've never met, and only heard, felt like going into the unknown. I prayed that the time would be glorifying to God and how He has worked in my life. I read a few sections of what I wrote, but made sure to emphasize the blessings I have received.

Unlike my previous radio appearance, this one didn't go out live. It will be edited into a podcast that should release late this month. One request I made was that I could present the gospel and have it in the final product. I'm not sure if I'll get to preview it, but I hope they do keep it in. The station's motto is "always uplifting" and discussing sin and deserving punishment goes against the theme.

This week looks to be a little calmer with fewer excursions. That doesn't mean the busyness is less, but I'm thankful I am able to be used in various roles.

Entertaining Week

Most of the time, I am content to entertain myself by watching videos online, reading, or playing a simulator of some sort. This week, I ventured out to other sources of entertainment.

Several years ago, a movie came out called "Genesis: Paradise Lost." It used computer generated content to depict creation week and had several interviews with creation scientists that covered scientific evidence as well as theological concerns. As a follow-up, the next movie is called "The Ark and the Darkness." It was in select theaters on March 20 and 21, I got tickets for the 21st.

My regular day-time caregiver was also interested in going, so she agreed to stay for the evening. At 4:20, when we're usually wrapping up for the day, we pulled out of the driveway and went to Des Moines. It has been years since I have been in a movie theater and, after finding supper, we were in our seats before 7:00.

Wheelchair spots haven't changed, I was still in the third row from the front. However, all the other chairs were leather recliners with elevating legs. It looked pretty comfortable as nearly every seat filled and the movie began. Sitting for the next two hours, it was fun seeing the big screen, but I froze in the cold theater, even with my coat over me.

It wasn't quite what I expected, but it was still good. The CGI was well utilized to depict possible life before the flood as well as some of the flood and ark. Dispersed amongst everything was again extensive discussion on scientific evidence for the global flood. It then transitioned into prophecy in the New Testament that used the flood as an example for future judgment. We were back home again by 10:30 and I was ready to get back in bed and warm-up under the blankets.

Last night, my parents and I went to a local high school play, "To Kill a Mockingbird." The classic book has been placed on the "do not read" shelf by some political groups as being racist. However, it's good to see the students, and our friend's son, depict the story on stage.

This week looks to be another busy one in the quad life with teaching and medical testing. Hopefully all goes well and I look forward to working with more kids.

Vacation Week

I have said before, I am primarily a home body. I am perfectly content to stay around the house or go to attractions and events nearby that don't require much travel. I do enjoy seeing new areas, but hotels are hard for me to use and managing caregivers while away is challenging. Therefore, I haven't been anywhere overnight since my last year at CHAMP Camp in 2019. My parents, however, do like going out on excursions.

This past week was spring break for many schools in the area. My college intern caregiver, Brenda, wasn't planning to do anything during break and volunteered to stay with me in the evenings if my parents wanted to get out. It may have taken 2-3 seconds for them to happily say yes, so my parents went out during spring break.

They left early Tuesday morning, before I got up, and returned Saturday afternoon less than 30 minutes before Brenda was scheduled to leave. That meant Brenda worked four evenings in a row as well as the regular ten-hour shift. This allowed me to have 24-hour care without my parents for over four-and-a-half days.

It has been a busy time for me in various projects, which means I didn't do much out of the ordinary. However, it did allow me to bike five days in a row and be on "my own" again. Mom and I planned meals before she left so that Brenda and I mainly just needed to thaw frozen meat a few times and put together whatever was planned. Just the two of us didn't eat much, which made for plenty of leftover choices for Saturday night.

Brenda will be graduating soon and plans to return to her home in Arizona to continue her education. Therefore, these extended times of freedom will soon be gone again. I'm thankful for the time we do get and the relaxation it gives to everyone.

It looks like another busy week ahead which started by preaching this morning. The quad life continues through every day and I'm thankful for the blessings God has given.

Eliminating Human Option

Even before 2020, some companies were working to reduce employees and replace them with other options. Retailers such as Walmart replaced some checkout lanes with self-checkout. Therefore, instead of someone checking your items and bagging them, the customer has to do everything. Some stores have completely replaced checkout isles now so that you have no option other than doing it everything on your own. This has become normal routine when shopping, but it causes more problems.

Walmart, and other companies, have had to close stores due to a large increase in theft. Some people have learned to trick item scanners and get an expensive item for much less than the actual cost. Yes, these stations are somewhat monitored by employees, but not very closely.

When getting supplies, I refuse to self-checkout isles. It may require waiting in line for several minutes, but it's still worth it. Having an employee scan items decreases chance of theft, gives work for someone, and can allow for a gospel conversation. The products I purchase are going toward paying that person as well and I don't get a discount if I do their job.

The same thing goes with online interactions. Automation can be used for most items, but human intervention is sometimes needed. The last several weeks, I have talked about my trouble with Facebook. Saturday morning, I tried to make another account with a name and email change. This time, it worked and I was able to login. I started giving friend requests to people I know and were aware of what has been happening. However, the account was again suspended a few hours later as being a duplicate account of one that had been banned.

Without the option to contact an actual person, I can't see what was originally marked to delete my account or help to replace it. Now, even with searching for solutions, I have to guess and see what might work. I'm used to not interacting with many people, but I have definitely noticed the social isolation.

Studies have also shown that Gen Z especially struggles with human interaction and depression from it. Only looking at screens and text instead of verbal communication is something mankind was designed for, and needs.

I will start the appeal process for the third time and see what happens. As winter looms and this quad life mainly stays at home, I'm not looking forward to very limited interaction with people. However, it does at least allow for more time studying God's Word and His creation.

A Day Trip, and No More?

Last week Saturday, June 24, was the annual Galesburg Railroad Days in Galesburg, IL. Since 2021, it has become an annual trip that Dad and I make for a fun day of trains. We left home early Saturday morning and made the three-hour drive to get in line to enter the model train show.

Shortly after entering the college field house, a ticket number was called for the door prize. As dad looked at his ticket, the announcer red the same thing he was seeing. Therefore, we returned to the entrance to claim our prize, a full loop of track, controller, and short train set. It looked similar to what some people have around Christmas trees and is a great starter for those new to the hobby.

All week had been very warm in Iowa with Saturday not any different. The forecast for Galesburg that day was sun, thunderstorms, and a high of 91°. As we roamed around the building looking through various vendors, the heat in the crowded, non air-conditioned building continued to rise. After nearly two hours of looking at model trains, and carrying around our door prize, we purchased a couple good deals and departed.

Instead of returning on the route we had came, Dad thought it would be fun to go through Ft. Madison, IA. I liked the thought of watching trains in the river city, so we started to navigate to the town, with a very sparse map. Using our compass and guessing our approximate location, Dad picked roads that were going the correct direction. Unfortunately, my nearly 30 year-old van does not have good air conditioning. As we traversed very rural roads with nothing in sight except fields, I continued to be on the border-line of overheating.

It took nearly two hours to navigate the 70 miles between the two cities, but we made it. Our first stop was to watch a train we had followed into town. Doing so, we were also seen on Virtual Railfan's Fort Madison railcam and received an alert from my uncle of sighting us. Next, we found a local ice cream shop where I gladly ate a dish of plain chocolate ice cream to try to cool down. We stayed in the railroad magnet for about an hour before starting our remaining two hours home.

Finally, about halfway home, we ran into the thunderstorms we knew were coming. The downpour of rain sometimes made driving a challenge, but it provided a welcome decrease in temperature. After several hours of being too hot, it was nice to cool down. Unfortunately, my nearly healed final pressure sore did not fair well and nearly doubled in size. Therefore, some fun outings I had in mind for this summer have been delayed and will likely be canceled.

Living the quad life has challenges in many directions. I'm thankful I was able to spend time with Dad on a hobby we both enjoy. However, I should have been better prepared to deal with weather conditions and check my body more carefully before many hours in my chair. I do now have two more model train cars on my track and a kit to use in some way. Now, I look forward to a slow week for outings and more recovery at home.

Tired, but Productive Week

When I graduated from my first round of college in 2003, my night schedule changed. If a nurse is unable to come, I stay up with mom so she can stay awake more easily. This has been the case for two decades now, and it's starting to become harder.

Last week, I said my main night nurse will be gone for a few weeks and my day-time caregiver, Sara, was out one day for illness. Unfortunately, she wasn't able to return this week which meant only two days and three nights were covered. I've had several times this week I have not had energy to do much and start dozing off when I'm watching something I do want to see.

Thankfully, I was able to finish one website project I have been working on and I'm waiting back to hear from the site owners before starting three more. Therefore, my week was fairly free from more detailed items that could impact other businesses. I did get more editing done on my book and worked a few days until my mouth hurt, and then did some more.

With this week's progress, I'm over 2/3 complete with editing. It has been encouraging to see occasional remarks from the publisher of areas she liked or was happy to read. In one section, around 2009, I wrote about having night shifts not covered and my parents having trouble coping with the sleep deprivation.

Yes, it is a reoccurring theme that doesn't stop and gets old. I realized that I am now only a few years off from my parent's age at that time. It has me curious if the body goes through certain transitions at different ages or if any correlation exists. Whatever the reason for extra tiredness with this round of care shortage, it makes me especially thankful for all the care that I have been blessed with.

This week, I need to finish final preparations for preaching and speaking at a school chapel. Dad also saw a model train show is scheduled to be in Des Moines on Saturday. It sounds like a fun excursion, but will depend on how much energy we have and if I'm ready for Sunday. I will see what God has in store for another week of the quad life.

New Neighbor

I spend most of my time in my bedroom, sitting or laying in my bed. The walls and everything around me are very familiar, as well as the sounds that come drifting down the hall. I know what the dish washer and refrigerator sound like from my perch in the west wing of the house.

My nearest neighbor in the house is the laundry room. Almost every day, except Sunday, at least one load of laundry is either washing or drying. The sound of the laundry equipment, just on the other side of the wall in front of me, is a frequent background noise that drums along as I go about my daily routine.

For well over twenty years, I have had the same washer and dryer as my neighbor. The washer has had a number of health challenges with some of its parts wearing down and increasing in noise as problems increase. However, dad has been faithful to take my neighbor out to the clinic in the garage and carefully do surgery with various hammers to replace outdated organs. Sadly, despite three procedures this year alone, my old neighbor became too ill. Dad carefully tried to get a few more cycles out of it, but Neptune was done. She had spun her last load and with a bent shaft to her drum, she was all washed up.

Last week, while I dealt with neck trouble, my new neighbor moved in next door. This neighbor has a much larger appetite than its predecessor and eats more laundry in one gulp than we had before. While the old neighbor was sounded similar to an aircraft taking off, this one has all new sounds to learn.

I think it is similar to me and doesn't always want to get going. After being fed with shirts, shorts, and more, it makes some gurgles before going silent a few seconds later. The process repeats a few times before finally starting to process the meal of cotton and synthetic. I'm getting used to the sounds, but it's taking time. Late this week, my new neighbor's partner in laundry should arrive as well. It has been getting along with the old dryer reasonably well, but mom thought it would be best to have all new neighbors of the same age and model.

Living the quad life has its perks, even when laundry facilities take on a life of their own.

Short Exploration Visit

A couple weeks ago, my friend John came for his annual visit with his two boys. Due to having house guests all summer, it's getting harder for the three to come and hang out. Thankfully, an impromptu trip worked during a break from school.

I have fun seeing the boys grow, but annual visits mean they change rapidly. TJ in now nine and Jeremiah six-years-old. The youngsters are somewhat familiar with me, but I'm still a bit of a novelty. Jeremiah has become very talkative since last year and also more aware of his surroundings. While I was in bed, attempting to entertain him, he asked a few times about not being able to use my arms and legs. He also remembered I use a wheelchair and was curious when I would be in it.

Hearing his thoughts and inquiries is part of what I enjoy about being around kids. I gave answers that seemed to satisfy his curiosity and he soon saw me as just another adult, I think. Before lunch on Saturday, I was in my chair and we were all playing a few rounds of gas out (a game that includes flatulence). Between turns, Jeremiah had me rub his back with my mouth stick. I can't say I've thought of a stick as good for massage, but it made him happy.

Thankfully, it was also very warm for late October and our group of five guys (my dad, John and boys, and me), could stroll a few blocks down the street to a new accessible park in town. I have wanted to check out the park all summer, but thought a single 40-year-old guy showing up and looking around a children's playground would be a bit odd. I couldn't find anyone's children to barrow for an hour or two, so this was the time to look it over.

The ground surface had cement paths, but was mainly a hard compressed rubber. I'm sure it would be safe for kids to fall on, but my 500 lb chair sunk in. It felt like I was driving on waves or something that was moving and was actually fun just to drive around on and follow the boys around.

Next, dad saw a wheelchair accessible swing in one section. I only remember seeing one such swing in my life before this and I was glad to see one had been included. With the kids joining us, I rolled onto it while dad figured out how it worked. It didn't take much investigating and we were soon moving, with me sideways to the direction of motion. I soon regretted visiting after a meal and exited the ride. That was when it was noticed the swing was only meant for people ages 2-12, not three men more than three times that limit.

Unfortunately, John's wife became ill at home and our planned 42-hour visit became 23 instead. No matter the length of time, it was fun getting caught up and being with the kids again. Hopefully the next visit will be a little longer, but that could be another year away.

30 in 30

A few weeks ago, I wrote about a new goal for September, getting a video out every day on my YouTube channel. Yesterday, I finished editing and uploading the 30th and final video for the month. If I assume they all get released as scheduled, I will have made my goal.

Getting them made was somewhat fun, but a challenge as well. I like educating about the life I have been given and trying to help others. However, I didn't like the constant feeling of being pushed to get more content out.

At night, I had ideas for script running through my head while also trying to plan time to record. I did about half the videos while in bed. I prefer recording while in my chair, but I knew that it wouldn't be possible to finish everything. Therefore, I tried to prepare messages that included a lot of data for bed recording. It was easier to show statistics and other information on screen while talking about it and not needing to remember it and then add screen shots in editing.

I have watched some YouTube channels that regularly release daily videos, but I don't envy them. Constantly planning and editing is probably a routine you can get used to, but not something I want to do. For me, it would quickly get boring as most days are nearly the same. The channels I watch that do frequent videos are usually families with several kids. Children are usually active in various items and therefore more interest for videos.

While it was a fun experiment, I do not want to continue with the routine. Also this month, I had a doctor's appointment that found I have an infection around my trach. I started an antibiotic about a week ago, but I have to take extra precaution in order to keep my gut working correctly.

The quad life is one I know well and I'm thankful God has given me the ability to do this. I hope to do more videos soon, but only after a few week's break.

Galesburg Railroad Days

Yesterday was the annual Railroad Days in Galesburg, IL. It is held the fourth weekend in June and is a great gathering of railroad enthusiasts. Dad and I enjoyed visiting last year and we decided to go again this year.

Since our previous visit, dad has done a fair amount of work on our train layout. When I have extra funds, I have been ordering train cars as well as some scenery items. Like with every hobby, you can spend as much time and expense as you want and can still do more. However, a mixed freight train I have been putting together is now the correct length for the size of our track. While we have supplies for scenery, it has yet to be used anywhere.

Therefore, I didn't have any certain items I was looking for and knew I couldn't get much for cars or engines. Dad and I have a constant debate between what era to model. He likes older era equipment from the 50's and I like modern items that are on the rails today. With our two interests combined, we have far more items to put on the tracks than space allows. I suppose we could fill every inch of rail we have, but then trains wouldn't have room to move.

Dad and roamed through model train vendors for about three hours. I did end up getting a few items, but restrained myself from getting much. We then got a very late lunch and ate while sitting by railroad tracks for about an hour before returning home. The two of us left home at 8:06 Saturday morning and returned around 7:45 that evening.

It was a lot of driving for only four hours of doing what we had planned. It was still fun though and likely the only major outing I'll have this year. Dad has already discussed changes to make next year go better, but I was thankful I didn't suffer any major setbacks like last year. Now, I have a week to prepare for preaching twice next Sunday along with a busy work week. It is an interesting time of year for the quad life.

Surprise Speed Bump Visit

Almost annually, I talk about a visit from my best friend John. We have been friends since his dad came to be pastor at our church, which included through high school, and I know his family well. During my senior year of high school, John and I were both in journalism class together. One class period early in the year, we were bored and looking to fill time after our assignment was complete (maybe complete anyway).

John's oldest sister was a freshman that year. John and I schemed a little, and came up with a sign reading, "To me, all freshman are speed bumps." I hung it on the back of my chair during lunch that day and it resided in my locker all year. John's sister of course was the primary source of our thinking and she earned the nickname Speed Bump.

It has been more than twenty years since I graduated high school. The last time I saw all of John's family was at his wedding in 2005. I have followed his sisters on Facebook and interact with them, but that has been the only contact for many years. However, Speed Bump messaged me late last week to see if I was busy and if she and her boys could visit.

Speed Bump's husband couldn't get off work for spring break, but she wanted to come and see the new church facility, tour town with her sons, and see the old building before it (possibly) gets torn down. Tuesday was cold and cloudy and meant no possibility of walking to the park. Therefore, our group stayed at home playing Jenga and I got to practice my grade school routine of writing with mouth and feet. 

I loved getting to meet her boys and catching up on life for the past several years. The short two hour visit went quickly, but I've heard the kids want to come in summer and go to the park with "Joel in the wheelie chair." I have also been thinking that offspring of a speed bump would be small, but still noticeable when getting ran over. I may have to call the kids my rumble strip, but not sure of it yet.

Whatever fun names we make, it was a great visit to get caught up with friends again and meet her family. I always enjoy being with kids and teach the quad life is just a unique way of living. April should be busy with school visits and other activities, but I hope it won't be another decade before the next visit.

Week of rest again

My family and I have made it through another week of long nights. On Friday, we rejoiced at the news that my main night nurse was released to return to work. Friday and Saturday night were covered by my other night caregiver which means that part of my schedule should now be filled.

It was nice to get to sleep all night Friday. Saturday morning, my caregiver reported to dad that she didn't hear a word from me all night. This stretch has again let my family grow in appreciation for the blessings God has given us in nurses.

Tuesday was 2-22-22, and I had planned on getting some pictures of my clocks showings all two's for the time and date. I forgot, but did a substitute of taking a screen shot while watching trains in Flagstaff, AZ through Virtual Railfan. At 11:22 PM Central time, I took the picture while a train was passing. To note the event (yes, I'm easily entertained and don't get out much), I posted the prize photo on Facebook and said why I was awake.

My purpose was to show the unique time stamp, but my friends picked up on the lack of nursing and commented on the situation. One friend, who is a fellow vent-dependent quad nearing 39 years post injury, said he hasn't had night care for seven years. His aunts help him with night needs instead and he's able to stay living independently. Two weeks was very hard on us, I can't imagine going for years. However, I'm thankful for the support system he has in place.

Finding caregivers has been hard for years, but is now extremely difficult with government mandates and fewer people in healthcare. Another friend said that a hospital close to them has started hiring people with no formal medical training and teaching them what to do. I can see this becoming more common, especially for those in the quad life trying to stay home. Paying these caregivers is another issue, but it's at least a good start to find someone.

It looks like the start of March will be a week more toward normal. As my busy time of year resumes, I trust in God's timing to continue to provide all I need.

Lemonade from videos?

My nickname in many places online is some variation of trainman. However, it's becoming very rare that I get opportunity to go and just watch trains. Last Saturday, dad and I got to a small town in southeast Iowa to watch trains. To document the trip, I like to make sure to get trains on video and then put it on my YouTube channel.

After lunch, we checked out a model train display from Scale Trains and could then finally record the trains we were seeing. Dad isn't very familiar with my camera, so I try to make it as easy as possible to use. Instead of going through settings to select video type, I had him hit one button that would just record from whatever was set previously. 

Dad very nicely setup his tripod and made sure to have the shots framed well to see the trains, or barges, perfectly. We caught several trains on the busy main line and even two trains that met perfectly in front of my camera. On the three-hour drive home, I looked forward to seeing what we captured and getting them put together into a long video. However, when I transferred the content from the camera to my computer, I noticed the files seemed much smaller than I expected.

When I looked at the videos, I realized they were all taken in high-speed time lapse without any sound. Therefore, instead of nearly 30 minutes of train videos, they were less than three-minutes total. Looking at them, I could see they were all perfectly framed and looked great, except in high-speed. I felt horrible that dad went to all the work to capture the videos and they wouldn't be useful. If I had him use the slow method to setup video type, it would have been fine. However, in trying to make things easier, it ended up being worse.

I thought and slept about it Saturday night and Sunday and wondered what I could do in editing. I tried slowing the videos down, but they looked jerky. Therefore, I found a music site for YouTube, put the videos together, and did a high-speed review. It wasn't what I had planned, but it still worked out. Next time though, I'll go through the slow setup method at least once.

When Plans Plummet

My parents do a large amount of my care and covering hours that I don't have caregivers. For many years though, they have been able to take two extended, 7-10 day, vacations a year. In the evenings, when my parents usually help me, my grandparents and irregular caregivers helped cover the time. Now with both grandfathers gone, fewer hours for caregivers, and less help, it has become hard for them to get away for more than a day.

With fall approaching and the change in trees, mom and dad got it arranged to be gone for two days and one night. Only one evening needed to be covered and my regular day assistant would cover Friday and Saturday as her regular shifts. When the weekend's weather was predicted, it looked like a great time to be out.

On Thursday, Sara, my assistant had a bit of a cough, but nothing unusual for this time of year and allergies. Friday morning though, ten minutes before my parents planned to leave, Sara called that was ill and wouldn't be able to come. Therefore, at 6:00 in the morning, they unpacked the few bags they had and called to cancel the hotel reservation.

This isn't the first time plans had to be changed, but I always feel bad when it happens. I was sad that Sara wasn't feeling well, and more disappointed that mom and dad couldn't get a break from me. I'm very thankful for all they have done and instead of looking forward to retirement years, they are still stuck with helping me. It is a part of the quad life that has become familiar, but never gets easier.

Yesterday, the predicted nice weather continued. The three of us took advantage of it and went to northern Iowa to watch trains for a few hours. It wasn't close to a two-day get away, but at least they were able to get out of the house for a while.

Winter will soon be showing its ugly head again when we don't go out at all. Even though it wasn't planned, I'm thankful when I can get out to enjoy God's creation.