First Week with Starting Trouble

Most weeks come and go with little change and everything blending together. This week went relatively well, but ended with some excitement.

Tuesday, I had an appointment with my pulmonologist in Des Moines. However, I didn't receive my usual email reminders. I called Tuesday morning to confirm my 11:00 appointment and was told I needed to arrive at 10:30. That gave me 75 minutes to get dressed, in my chair, and drive for over an hour. My caregiver and were late, but five-minute appointment went well and my lungs are doing great.

Friday morning, I spoke at a school about 15-minutes away from home. While driving through the Iowa country side, we heard a kind of screech or rubbing sound. Upon arrival, I called dad and let him know the issue. I helped with the school's morning worship and enjoyed being around kids again. Kindergartners reviewed their memory verse along with different grades doing various activities.

My presentation was on God's name and giving Him proper fear and glory. The K-6th students seemed to understand and listen, but they may have been concentrating more on my wheels and footwear by their eye direction.

Returning to the van, I found a note from dad that we should be okay to go home. That was good to hear, but then my wheelchair lift didn't work. My caregiver, Sara, tried the indoor emergency controls and got it to work. A friend followed us home just in case, but we got back in the garage without trouble, other than noise. Sara had to again use emergency controls to get the lift to work, but I was finally home and out of the vehicle.

Friday evening and Saturday morning, dad spent time diagnosing problems and researching solutions. Parts look hard to find for my 30+ year-old van, but he did a temporary cleaning solution that solved the noise. A little wiggling of a sensor also fixed the lift, so my transportation is hopefully good again.

I'm thankful for the parents God has given me in this quad life and everything He has enabled them to do. As I write this on Saturday afternoon, is now having muscle pain in his leg. Since he does most of my physical care on weekends, it makes everything harder. Such is the quad life, but I continue to pray for ease for my parents. Hopefully this coming week will go more smoothly.

Venturing Out in 2025

Winter has officially ended and this week will also conclude my hibernation. Yesterday, dad and I took my first outing for the year by taking a trip to Des Moines for a model train show.

It wasn't anything spectacular and mainly had vendors selling used model trains and starter kits for kids. Dad and I did purchase an engine that we originally thought was new, but learned at checkout it had been used by the seller. He guaranteed it would work, so I eagerly waited to get home and put our new, modern, locomotive on the tracks. Unfortunately, all I could get get it to do was turn on the headlights and make noise.

Dad and I worked on reprogramming it, but we have yet to be successful in making it run. Hopefully it won't be a permanent paper-weight, but more investigation and testing will be needed. I guess it's a good lesson to not always trust used car, or train, salesman. 

My empty calendar pages end this week as well with my first doctor's appointment and speaking engagement both scheduled. Friday will again be the most challenging venue I currently visit. It is a school chapel, or Scripture teaching, for students from Kindergarten through 6th grade. For disability awareness talks, I normally just visit with 2nd or 3rd graders as that age group seems to understand everything the best. Trying to make a talk where Kindergartners will understand and 6th graders not get bored is a challenge. I pray God will use my words to help the students learn, but I never quite know how to best teach such a wide range.

Of course, I didn't get as much done during winter hibernation as I hoped. However, I can always continue with more writing and reading projects in the warm months as time allows. I am ready to get back into a busier quad life though, at least for now.

Spring has Arrived, Maybe

In just a few days, spring will officially arrive in the northern hemisphere. This past week has felt like it, but only briefly. On Thursday, it was sunny with a high in the low 70's. I got out to run my own errands for the first time this year.

I also joined a local pastor's meeting on the same day. They meet monthly during the school year, but it's rare that weather and schedules work for me to join. It feels somewhat odd being the only person who isn't directly employed as a pastor or chaplain. However, I can still learn about pastoral needs in the community and where I can possibly help.

Friday was also nice enough that I got out on the deck to start work on my annual sun tan/burn. It felt nice sitting outside again, even though the wind was a bit blustery. This weekend though, we have highs in the 40's and my Amazon Echo mentioned snow for Wednesday. Iowa weather is indeed a mixed bag as it seems seasons fight for control.

Lately, it seems like I spend more time in meetings than anything else. In addition to Thursday's, I had virtual meetings Tuesday afternoon and Friday morning. I'm vice chair of the Olmstead Community Task Force, a group appointed by the governor to monitor and improve independent living for Iowan's with disabilities. The chair person has been out with other commitments the last two meetings, leaving me in charge. Since the Iowa legislature is also in session until April, it is a busy time of year for our group.

The executive board (which results in more meetings) has said they would encourage me to consider being chairman. I have declined, but I think I'm being put in the role whether I want to be our not! Official title or not, I'm thankful I can help lead a group that works toward positive change and where my quad life experiences are an asset.

This new week looks to be free of meetings, but more work. Hopefully I can also get more time in the sun!

Seeing the Divide

For the past several years, political commentary has talked about the growing divide between the two parties in US. It seems that no matter how common sense a bill appears, one party will support it and the other reject. This week, the divide was easy to see.

On Tuesday evening, President Trump held a joint address of the congress. I watched about a third of it live, but saw more parts through replays. At one point, the President honored a 13-year-old boy who has battled brain cancer for years and overcome doctor's expectations. His dream is to become a police officer and he has been made an honorary officer numerous times. Tuesday, President Trump made him an honorary secret service agent.

The look of surprise and thankfulness on the young man's face was priceless. The moment brought much applause and tear filled eyes, but from only half the room. The Democratic party members didn't budge and looked annoyed at the special honor given. A number of news outlets had comments about the political party's reaction.

I see much the same when witnessing to people on the street or online. We can clearly see God's handiwork in His creation in very intricate detail so that we are without excuse. Yet, many scientists turn a blind eye to it and claim random chance evolution. They refuse to see what is before them and stay stuck in their ways.

In the same manner, many want to go on living a life of unrepentant sin and enjoy its pleasures for a season. God said come to Him all who are weary and burdened, and He will give them rest. The struggle against sin never ends, but all who repent and trust in Christ alone have an advocate on the day of judgment.

I pray that the divide in this country is ended and we can return to common-sense laws, such as only biological women in women's sports and private spaces. Until we turn to God though, the divide will continue to grow. I hope to live this quad life to help spread the good news of salvation to all.

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.

Looking Back at 40 Years

February is always a month of transition for me. The last major, long-lasting, storms of winter and cold air usually subside and start to give way to spring. As I write this week's entry, a long stretch of sub-zero temperatures has ended and the thermostat is above freezing. February 20 is also the anniversary of entering the quad life. This years marked the 40th anniversary of that journey that started on a cold winter evening.

The last few days, I posted an entry on my Facebook page and a video on my YouTube channel to mark the date. Seeing the comments has relived support from so many over the decades, and memories of all that has happened.

As a three-year-old, I didn't fully realize what was going on with my body. I don't remember waking up to a realization one day, but just gradual acceptance of this was just my life. My parents were told I would be walking by the time I was ten, which was also about how long I would live. More than four times than that has passed, and I'm still here, but not walking.

When my parents won the battle to bring me home again and live a "regular" life, they were warned I would constantly be sick. I went through grade school, high school, and college without any major illness. Pressure sores were, and are, a problem, but that wasn't due to classmates.

Technology has also vastly improved with now using the diaphragm pacemaker, FES bike, and general antibiotics. I greatly miss having uninterrupted speech on the vent, but enjoy having natural breathing.

Unfortunately, I've lost many quad friends that have not been given this many years. I sometimes wonder why God chose to bless me this way, but I try to work for Him however I can. What this next year, and new decade, will bring, I don't know. Whatever it is, I trust God and His lead in everything.

52 Churches

Most of my book reading revolves around two subjects, apologetics (defense of the Christian faith), or theology. For Christmas, I received a new book called 52 Churches, by Paul DeHaan. It doesn't quite fit either of my usual categories, but has a flavor of both. I am a few pages away from finishing it, but have covered the main points.

The author volunteers at a food bank and regularly received questions on area churches. Therefore, he and his wife took a fact-finding mission to visit a new church every week for a year. Each week's report is fairly short, but I quickly notice a few themes for the various congregations.

A big item of discussion is how welcoming a church is to visitors. The majority had greeters at the door, but beyond that was hit and miss. Some had members that went out of their way to welcome the DeHaans and guide them through the church's particular worship style and act as tour guides. Unfortunately, he reported a few that completely ignored them and they almost left in tears. Being part of a church is fellowship with other believers and sharing struggles and triumphs in life. That can't happen if you're invisible.

I couldn't help but think of my own congregation and how we do in these ratings. As a life-long member, I obviously can't speak as a visitor. However, we have been growing the past few years and must be doing well with newcomers. Unfortunately, my parents and I have many weeks that we sit by ourselves after church eating cookies and juice while everyone around talks in small huddles. While it's nice to be approached by friends and chat, I'm not any better at rolling over to someone and talking with them. If I'm in public and armed with gospel tracts, and a willing caregiver, I'll approach anyone to talk. It shouldn't be different in church.

One item in 52 Churches really piqued my interest, especially this week. Unlike most authors, I did not research DeHaan's background before reading his book. I would guess that he has some sort of architecture experience or vocation. Most weeks mentioned the sanctuary's size and seating capacity as a point on church size. One week, he mentioned the structure actually looked like a church. I understand his point in that many modern church structures no longer have towers reaching to heaven and resemble retail buildings with maybe a cross added in.

My own congregation left our 1930's built structure in 2020 for a new building on the edge of town. The city purchased our old building and this week tore it down. The structure that lasted nearly 100 years fell within a couple hours. The brick siding, bell tower, benches, and much more were unceremoniously crushed and shipped off to a landfill. Yes, it is just a place to gather together for praise and worship and the new facility is much more wheelchair accessible. However, there is something about going to a unique structure that sets a mood for a special time of the week and not just a regular outing.

At any point, these are the musings from an old quad life. I'm thankful for the friends I have at my congregation and for our fellowship. The book will make me notice visitors more, and maybe try to be more outgoing to others while also wanting to get home. 

*Pictures used by permission from a friend's Facebook post