Working to Breathe after Traveling

Living through four decades of the quad life, I have learned a few things about lung health. One, I cannot continually go between warm and cold environments as my body can't take the rapid change. Second, I need to make sure I move regularly and not stay flat in bed for long periods. Both these lessons were learned by doing them and then ending up in the hospital with pneumonia. Unfortunately, I did both of these scenarios and added a third irritant just for good measure.

Sitting in a cabin to chat

During my trip, we brought one of my regular night nurses. This was my first time traveling with Steve and my parents and I wanted him to be able to enjoy the excursion as well. Therefore, after my parents took over at 7:00, we stayed in the hotel for a few hours so he could sleep. We did this three mornings in a row, which meant I was in the hotel bed for 11-16 hours straight. I turned on my sides at night, but the beds aren't easy to move me on and tried to decrease work as much as possible.

The weather in Indiana and Kentucky was wet, but nice temperature. We got caught in a couple down pours, but made it through. Just like in previous years, the buildings at camp were very well air-conditioned and visiting cabins was rapid adjustment. Our hotel rooms were frequently quite cold for my preference, with the air-conditioning nearly constantly running. Two scenarios are down, but one more came.

Wednesday and Thursday nights were in one hotel in Kentucky. Steve and I noted our first night that the AC sounded funny, but it worked. Thursday evening, I was in bed while my parents and I hung out until Steve had a nap. Even though it was on the opposite end of the room, it felt like the frozen air was pointed directly up my nose. After a while, my lungs started to feel sore with every breath. I asked dad to turn off the AC for a while and pull up the sheet, but it was too late. It wasn't long before I needed suctioned as well. Clearing out my lungs isn't unusual, but I normally need it 2-3 times a week. By the time morning came, I had already been suctioned seven times.

Ready to head home

I had Steve turn me to my sides to keep junk draining from my lungs, but it only helped to delay the procedure. Friday morning, we left as early as possible and let Steve sleep in the van. I suctioned once before leaving our accommodation and didn't like the looks of what came out. For the ten-hour drive home, we had to stop and clear my lungs twice, but thankfully not like over night. Steve also wasn't feeling the best, so we both suspected the hotel's AC had mold or something. I had hoped getting home would clear up my breathing, but it didn't.

The routine of suctioning 6-10 times per day, and constantly turning me to help my lungs, continued over the weekend. A trip to the local ER on Saturday didn't produce answers, but an antibiotic was ordered just in case.

Monday morning, I called my supply company to order more sterile gloves and suction catheters. The 60+ tubes I had before leaving would normally cover more than a month, but they were dwindling rapidly and would soon run out. Late Tuesday afternoon, a box arrived from the company, but it didn't contain what I ordered. It wouldn't be until Friday when I finally got my order, but not all of it.

Thankfully, suctioning has decreased to 4-5 times a day, with occasional long stretches between. My lungs are sore, and I'm tired, but a second medication has started and will hopefully help. I likely won't ever know for certain what exactly set off this round of illness, but I need to pay better attention to lung health. It's unlikely I will be traveling again, but I'm thankful for the time away and the experiences enjoyed.

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. 

Final School

It has been a busy week of finishing and preparation. Tuesday was my last class for the year. It was a group of nine Occupational Therapy Assistant students who seemed to listen well. One in particular was very quiet and attentive (see picture).

OT students are very interested in all the different items I use to function. I discuss my wheelchair and different options as well as how I use mouth sticks and what type works for different needs. In class, they don't get a lot of real-life experience, especially with all the equipment I use. My schedule one-hour presentation frequently turns into 90 minutes or more. I wonder how much they actually remember after I leave, but hopefully my presentation helps.

Thursday morning, I visited with my ENT about my trach button and nose. It looks like I may have infection again, so I'll see what results come from testing. For my nose, I hoped to get help for breathing at night. Unfortunately, nose cartilage keeps growing throughout your life and mine is growing crooked. Therefore, when it gets annoying enough, I'll need to have it surgically corrected. It wasn't the answer I wanted, but it was an answer.

Today, Father's Day, is the last day to relax. After six years of staying home, I'm finally planning to take an over night trip. I've been thankful for all dad's help in packing, checking the van, and making sure everything is ready for a road trip.

Dad continues to do so much for me in many ways and rarely gets to take a day off. He should be at least somewhat retired, but continues to work at least full-time to keep insurance. I look forward to when he can slow down and not have work responsibilities.

I will continue to see what the quad life brings and be thankful for who God has put around me.

Knowing Your Area

In every hobby or field of work, you gain experience as time passes. Different scenarios help to gain knowledge so that when it happens again, you can quickly solve the issue. The same is true when studying Scripture and using it as your basis for thinking.

If I am talking to someone on the street, I have verses I can reference for different objections. In Matthew 5:22, Jesus expounded on the sixth commandment that hatred is the same as murder. A few verses later, in 5:27, He said that looking with lust is the same as adultery. Further references are Ephesians 2:8-9, Romans 6:23, and a handful of other verses. When preaching, I tend to study one text and use other passages to support the message. However, I have been noticing lately I may be getting narrow sighted and need to pay further attention.

For the last few weeks, I have been reading a book on general advice for Biblical counseling. I took an online course early in the year and this has been a very loose follow-up. As the authors look at different counseling scenarios, they point to various passages that help relate to a situation and may assist the counselee to a better frame of mind. While some of the advised texts are familiar, the majority are ones that I would need to look up and further learn their context.

I have written on this blog several times about my routine of reading the Bible. For several years, I read through from Genesis-Revelation twice a year. Now, I'm down to about once a year of cover to cover, but replaced one of my reading times with more in-depth study. This is slower, but I still progress through Scripture and invest in God's Word.

At this point in the quad life, I do not see starting a new career as a Biblical counselor. However, as a part-time preacher and occasional mentor, I do see it as useful knowledge to be familiar with. If nothing else, this latest book has taught me not to get blinded to one train of thought while studying. Continuing to broaden my knowledge and quick reference tools will always be helpful, no matter how often or little they get used.

Sitting Satisfactorily Soon

Just two weeks ago, I had my evaluation for a new wheelchair. This week, I made further progress toward getting a new system. This is much faster progression than I expected and it's a welcome change.

Early Friday morning, dad, my caregiver Sara, and I loaded into the van. First off, the rubber pad on my chin control popped off, making it so I couldn't move to get positioned. In the process of retrieving it, my control/display box was leaned on and broke the mount. Therefore, going to look at my chair's replacement caused my current chair to fall apart.

After getting my parts back together, we got to the Des Moines suburb thanks to Google's directions. The first order of business was to fix the seat I was sitting in. Searching through their parts inventory, the chair tech I met at my first evaluation found a duplicate part to support my box. Thirty minutes after arrival, using tools he had available in the van and provided pieces, dad had it fixed. Next up was what I actually came for, getting fit for a new back rest.

I was situated in a chair that had a foam pad on the back. The technician pushed and pulled until I was sitting straighter than I have in years. After he was satisfied, air was sucked out from the foam-like substance to keep it in place. He then took pictures of it and less than an hour later, a new back support was produced. The last time I had my back adjusted, it took several months and no longer fit when I got it. I didn't get the back rest fitted to my current chair, but look forward to using it.

Finally, I was shown demonstration models of the chair that was suggested. I have hardly heard about Quantum chairs, but liked what I saw. The frame is slightly narrower than my current system and the sit has more functions. I can go up to 10% of a standing position and raise the entire seat a full foot. Therefore, when speaking to someone tall or preaching from the floor (no stage access), I can elevate myself. In these situations, I can be seen more easily and hopefully preach more effectively.

If insurance approves everything, I may have a new chair in three months. Considering it took me eight years to get my current chair, this is a great start. Living the quad life has perks in seeing new technology. I am thankful for what God has provided and look forward to what may come. 

Who Will Remember?

It is Memorial Day weekend, the time of remembering those who have fought and died for our country and honoring loved ones. Friday evening, I went with my parents to place flowers on my grandparents' graves. Sitting in the van, several thoughts came to mind.

In the first cemetery we visited, it has several grave markers from well over 100 years ago. This wasn't my first visit, but I noticed a change in a few of them. Markers that had been tilting, were now fallen over and a few sat in a pile in one corner. As I read a large, modern stone, I was surprised to see the couple listed died in 1895 and 1908. The children of these two have likely also died years ago, but someone obviously replaced their original monument.

On our second stop outside of small town Iowa, the cemetery was a flurry of activity and seemed to be the town gathering spot. Families were out dispersing flowers and small groups were huddled around talking. This memorial area does not have any century-old markers, that I noticed, but also had many more flowers and recognition.

Unless God has major changes for my future, I am the end of my family line. At some point in time, be it near or far, both my parents and I will be gone from this earth. As I noticed the old stones left unnoticed and degrading at the first cemetery, it will likely be the case for my marker after a few decades. While our bodies may decay and be forgotten, everyone will be living forever.

God knows every person that has lived, is living, and will be born. It's hard to conceive knowing billions of people, but He is present for each. After departing this life, we will spend eternity in either heaven or hell. We need to be sure to born again by repenting of sin and turning to Jesus alone for forgiveness. As we reflect on those gone before us, let us remember our time is approaching and to spend it serving God and His will.

Finished and Beginning

It seems to be a usual condition, but it was another busy week in the quad life. It started one activity, finished another, and started a big project.

Tuesday morning was my first of two scheduled college classes. Unfortunately, I don't have very many college courses left. I have helped teach four different subjects in three different schools. Now, I'm down to two subjects at one school. I'm thankful for what I have been given, but wish I could do more. Nursing students could especially benefit from knowing more about spinal cord injuries and home care, but they are the hardest classes to get into. I continue to pray that I can visit current classes and expand again.

Thursday was my busiest day, starting with my final grade school visit of the year. A total of 11 students were in the combined 3rd/4th grade classroom. These are the oldest kids I visit, but they are generally the calmest as well. The instructor was quick to post pictures on the school's Facebook page and was thankful for my visit. I really enjoy working with kids and would love to find some type of summer program I could help with. I have no idea how I could fit it in, but it would still be fun.

I quickly transitioned from teaching kids Thursday morning to a big project. In August, my wheelchair will be ten years old. Power chairs are made to last five years and then be replaced. My current system has done pretty well, but it has definitely not supported my back very well. Due to various factors, my insurance may also be changing in a year. Therefore, I've started working toward a new chair.

The initial meeting went very well. I had a list of items to adjust, keep similar, or have on a wish list. Everyone listened to me and liked that I knew what I was talking about. I have another appointment in two weeks to see a potential chair option and get molded for a new back. Considering it took eight years to get a new chair last time, I'm excited to see this process moving faster. Time will tell if the momentum continues, but I'm pleased so far. 

This week looks slower, but it will not last long. Hopefully the rest will help get caught up on other areas.

Mother's Day 2025

Today is the day set aside to celebrate mothers. Both parents have the important task of raising children in the knowledge of the Lord, but it especially falls to moms. God gave men and women complimentary traits and women tend to be more gentle and able to help children, just as God designed. My mother especially uses her God given talents.

For the last two nights, I have not had any help at night. We knew this was coming, but it still means 53 hours straight without outside help. Dad goes to bed around 9:00 in the evening and it's just mom and I until he gets up again at 1:30 in the morning. During this time, I go up and down in bed and start some of my night routine.

Despite being tired and having pain from a day of activity, mom still does what's needed. I wish I could make the time easier for her, but don't have another way to help. Mom also keeps track of everything for the house as well as helping with our family.

Above all, I'm thankful for the Godly instruction mom gave me. As a young boy, I remember sitting on mom's lap, vent tubes and all, as she read to me from a children's Bible. She also always encouraged me to keep up in school and not run over classmates.

We never know how long I will be able to continue living at home. However, mom has worked very hard for 40 years to allow me to live at home and be active. All the decades have accumulated much stress and many long nights, and I'm thankful for everything God has done through my mother.

Remember to cherish parents and look for their guidance while you can. We never know when life will change and someone will be taken from us. Let us celebrate mothers not only today, but every day.

Three Cold Days

For the past several years, I have volunteered with the gospel outreach group at Tulip Time in Pella. The last three days saw this year's event, and I'm thankful they're finished.

As I posted last week, my dad has been on vacation and I had an extra caregiver to help while he was away. Thankfully, this allowed me to continue volunteering all three days of the festival instead of just two. Since I am one of team leaders, I think it is best to be available the entire time to allow consistency for outreach teams. Unfortunately, that didn't quite work this year.

Spring has been reluctant to come this year and temperatures have been quite cool compared to previous years. Initial predictions for May 1-3 were for low 70's, but that continued to decrease as the days came closer. As it turned out, actual temps were at least ten degrees cooler with scant amount of sun and plenty of rain.

Each morning started with two one-hour training sessions at a church near downtown. They were all well done and great for learning how to share your faith and navigate current events. One session dealt with Marxism and covered several topics, such as climate change. My thoughts went to previous alarmist propaganda of the earth getting hotter. More warmth would have been welcome these days, but it seems to go more the opposite.

After training sessions, we then broke into teams and went out to designated areas to talk with people and give out gospel tracts. On Thursday, I was stationed at the prayer booth. We didn't receive any prayer requests, but did hand out gospel tracts and information on the town's Christian foundation. Friday saw an abundance of rain, which meant I reluctantly headed home after training and left my group with another leader. I felt bad for ducking out, but everyone seemed to understand that electric medical equipment and rain don't mix well. Finally, yesterday, my one team member and I parked ourselves on a very busy sidewalk corner and handed out gospel tracts as throngs of people walked passed. This final day did result in some short conversations, but nothing substantial or argumentative.

Despite wearing insulated jeans, sweatshirt, and coat, I returned home very cold each day. Saturday evening, I also felt quite tired after three days of activity and getting up early. I don't like to admit it, but leading an active quad life is getting harder, especially in non-ideal weather conditions. I'm looking forward to this week of staying home, and hopefully warmer temps as well.

Canyon Trip

Living the quad life, I rely heavily on others for help with everything. I have been very blessed with several caregivers, but depend on my parents a lot. After several decades, it gets very hard seeing them miss out on trips with friends or doing what they would like and instead staying home to help me. This week, tides have changed for one special outing.

My dad likes the outdoors, hiking, camping, and anything related. He often talks about dreams of this or that trail and doing some activity. A few years ago, I heard about a creation ministry that did rafting and hiking tours of the Grand Canyon. It sounded like something I would enjoy, but dad especially. However, being gone for 7-10 days would be nearly impossible. This is where I am especially thankful for the caregivers God has provided.

I talked about the trip to my then intern nurse from Arizona. Brenda said if dad really wanted to go on the trip, she would come back and help take care of me even after graduation. After MUCH debate, dad finally agreed to signup for a rafting trip. However, that portion of the adventure was over a year before actually departing. Continued debate has gone on for that year, but dad left this past Thursday with Brenda arriving Friday.

According the videos and brochures, he will be traveling nearly 200 miles down the Colorado River with multiple stops and side hikes. The group will explore the Grand Canyon from a biblical perspective rather than evolutionary and see more of the gorge than you ever could just by hiking. Dad is scheduled to return late Saturday and will likely be full of stories for years to come.

In addition to my regular helpers, Brenda is covering 40 hours this week as well as the last few days. God has blessed us abundantly with help, and I'm very thankful dad could take this once-in-a-lifetime trip. Later this week should also be a busy time for me, but that will be the topic of next week's entry. 

He is Risen!

Today is when we celebrate Easter, when Christ conquered death so that we may have life with Him. By Jesus' sacrifice and resurrection, He has fully paid for our sins.

Friday evening, I watched this video about Easter that covered some of the fabrications that have been made to say Jesus was a myth. However, paying close attention to what Scripture actually says can easily see through deception.

Several of the myths say that the record of Jesus was actually other gods and their information was changed to the Bible. Some of the supposed facts were that the gods were born of virgins on December 25 and were visited by three kings. However, Scripture does not give a date of Jesus' birth or how many wise men visited, just that three gifts were given.

It is also said that the disciples stole Jesus' body and made up the resurrection. Jesus physical body was seen multiple times, touched, and even witnessed by more than 500 people at one point. Trying to say everything was a hoax or hallucination would be a miracle of deception. Even secular sources from Rome confirm the biblical writings.

As we celebrate Easter, we can be assured it is the truth and can be fully trusted. Further evidence is also available by seeing the conversion of Jesus' brothers, Paul, and the major change in Jewish customs.

Living the quad life, I see daily how I sin against God and deserve His just wrath. I know I can never earn salvation, but Christ fully paid the debt I owe and deserves my full praise. Soon, I hope to be able to share the gospel with more people in person, but look for the opportunity anywhere. Have a blessed Easter and week ahead!

Two Visits for Three Schools

This week concluded most of my school visits for the year. On Thursday, I went to two campuses of one school and Friday was a virtual classroom.

I have been going to the main campus of first school for several years. The teacher, Mrs. K, is very familiar with me and my routine. The inner-city school typically has very active students with a diverse background. I came in as the class was in the library and got settled in among the desks. As I read names, Mrs. K noted the school is now attracting more families from a Spanish background than African. I was thankful to see I could read most of the student's names this year, which hasn't always been the case.

After the kids returned, I did my regular presentation and noted the class was MUCH calmer than previous years. Mrs. K always does a good job in keeping order in the room, but this group was exceptional. Less than two hours later, and after lunch, I was at the school's west campus to speak with 15 kids from 2nd through 5th grade.

My caregiver and I found the stately, older style, church building and was let in by a maintenance person. The interior was completely opposite the outside with fully modern carpet, walls, and signage. However, the first floor was completely devoid of people with no sign of a school anywhere. We found a brochure to the school and called the number listed for the campus we were apparently in, but couldn't find. Shortly after calling, two women appeared from an elevator and guided us to a room with several chairs, a small inaccessible stage, and faux windows with blue lights. Not long after, children appeared from somewhere in the building that we never saw.

Even with the diverse age group, questions went well and the students seemed to catch on. I apparently didn't specify clearly that markers or pens would be needed for the writing section and a teacher brought a large bag of pencils. They worked for the demonstration, but pencils were much harder to use and not comfortable on mouths. Thankfully, Friday's virtual visit with 3rd graders in Minnesota went well with no unexpected twists.

For almost every class though, I forgot or skipped at least one point I always cover. After 21 years of doing nearly the same presentation multiple times a year, you would think I could do it easily. I guess the quad life is getting older, and I had more affects from last fall's medical trouble than I thought.

One more school remains, but not until mid-May. I don't like that my visits went so quickly this year, but I didn't miss any regular schools and actually added one. Quick or slow, I'm thankful for the opportunity and getting to teach about God's world and love for all abilities.

Schools, Church, and Nearly Forgetting

Since 2014, I have written a blog entry almost every week. I generally write them on one of my Saturday sit times with a scheduled release of 2:00 Sunday afternoon. This morning, as dad was flopping me around to get dressed for church, it occurred to me that I completely forgot to write. Therefore, I'm actually writing on Sunday afternoon, mainly while flat even.

Last Tuesday was my first regular school visit. I had three sections of 2nd graders with about 20-25 minutes per section. The time went very quick and I skipped some of the items I normally cover. However, it was great getting to work with kids again. Short visits once a year are too few, I wish I could be around kids more regularly all year.

My final section concluded with afternoon recess. In wondering around the room as I spoke, I suddenly realized I was beside the coat rack where all 20 or so kids were headed. As children climbed around me, one boy stood about a foot away telling me some apparently serious revelation, but I couldn't hear a thing he said. My caregiver, stuck on the opposite side of me, later said she had the same problem. I didn't like giving generic nods, but it seemed to satisfy him.

Friday was another class of 2nd graders, whose teacher didn't tell I was coming. As students filtered in from recess, they had looks of surprise and curiosity on their faces. I finished more than 45 minutes after starting, but it went well and the active group seemed to learn.

This morning was my first, and currently only, church service scheduled for this year. It was a familiar congregation, but I'm responsible for the full service. I preached on James 2, demonstrating faith by deeds/works, and not earning salvation. I remembered most my points, but had a sore throat after talking for an hour. I considered dictating this entry, but my voice wasn't having it.

I'm thankful the van worked and dad is able to get me going, even with needing to use my hoyer lift. This will be another active week in the quad life with more school visits, but a break is coming!

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

Learning New Career or Just Learning?

Last summer, I took a 12-week course on expository preaching. It was a challenge to complete, but still fun and beneficial. A couple weeks after my final assignment, a pastor friend let me know about several free courses through a seminary in Texas. Looking through the options, I found a few that sounded intriguing. About the same time, I learned the instructor from the preaching course I just finished was disqualified from ministry for not practicing what he preached. This soured my appetite for pursuing more education, at least for a while.

A few weeks ago, I returned to the information I received last fall and decided to try a course. The first one that sounded interesting, and could be useful, was Introduction to Biblical Counseling. It hasn't happened in a while, but I have had friends that looked to me for help in hard times. I offer what I can, but I can always learn more.

The free course is only five lessons and doesn't offer any credits or certificates, it's just strictly for learning. So far, I have completed three lessons and hope to do the fourth this weekend. They consist of three to four videos that are around 15 minutes each. After watching each one, you answer a short multi-point quiz from what was just covered. The final parts include a short reading and a final quiz consisting of the same questions from the previous quizzes.

So far, I have received 100% for every evaluation. Some of the ideas are interesting and not necessarily how I would have thought. I'm not sure I'll ever use any of the material, but it's good to expand my knowledge. I saw last week how to become a certified biblical counselor through a two-year online course. At this point in life though, I don't foresee making a major career change.

I'm thankful that while living the hibernation quad life, I can keep my mind active. I will be starting a busy time for work soon and picked a great time to take this course. I will see what a new week brings!

Three Beeps

As technology continues to increase around us, we become more familiar with its sounds. Going to checkout lines at stores, we hear beeps as each item is scanned. At home, the beeps of a microwave, or oven, signal that our meal is ready to be eaten. When you can't breathe on your own, beeps from the device you're connected to are especially important.

For a quarter century, I knew every alarm from my ventilator very well. A short beep indicated high pressure and something was clogging the tubes, or me. A continuous alarm indicated low pressure with either a tube disconnected or I was breathing too shallow while sleeping. In 2010, after receiving my diaphragm pacemaker, I had to learn a new system of beeps from my electronic attachment.

I know well that two beeps in rapid succession mean the battery is low and needs changed. The initial warning supposedly indicates 24 hours remaining, but I've never tested it that long to see. If I didn't already realize I wasn't breathing, a series of three beeps followed by two more mean it's disconnected and not working. I learned a few years ago this is an international standard that indicates a major medical warning. In other words, beeps have become so integrated into our world, they now have national standards. Starting around late November, I heard a new sequence of three beeps I wasn't familiar with.

They happened very rarely and seemingly with no apparent cause. My breathing wasn't affected, so I let it go for a while as an oddity. A few weeks ago, I finally asked Synapse Biomedical, my pacemaker's developer, what they meant. They had me send pictures of the wires that come from my chest to try to spot any damage. Everything looked fine to my caregiver and I, but they spotted something that could be the issue.

Communicating by email Wednesday morning resulted in a company representative flying in and standing at my bed side Thursday afternoon. He moved wires around in every direction, but couldn't duplicate the beeps. Therefore, he carefully trimmed the delicate wires that protrude from my body and reconnected them as normal. Everything seemed to be fine, until the three beeps were again heard Friday morning. They continued sporadically last weekend and early this past week as well.

In frustration, I had my caregiver change the cable that goes between me and the DPS control unit. Since that change Thursday morning, the beeps have yet to return as I write this on Saturday evening.

Living the quad life has days of uncertainty, guessing, and learning. This week I learned that my beeping electronic friend may just be saying a simple change is needed. I'm also thankful for quick response to problems and the reminder from God of every breath He provides.

Much Done with Staying Home

This has been a busy week with a lot I could cover. Monday started with the inauguration of President Trump, and Tuesday was an introduction to a new class. Finally, on Thursday, I had work done on my diaphragm pacemaker system. I also biked a few times, and never left the house. Some of these topics will come up in later posts, but this week I'll look at the first item listed.

I don't watch mainstream media, or legacy media as it is starting to be called. For the past few years, it has become very biased toward one political party and very against Christianity. Therefore, I may watch local weather, but that's about it. I get all of my news through online resources for local items and through an online station in Australia. It's unfortunate, but I get my best US news from the other half of the globe.

Much of the world has been anticipating the change of leadership in the United States and changes started before the inauguration. For the most part, I have been pleased with the changes that have happened this week. Hostage release was great to hear, but hopefully the price paid won't cause more trouble later on.

Watching the flurry of executive orders to complete promised actions was interesting. I, along with many, am thankful to see the end of DEI policies and the declaration that only two genders exist. While I agree with these orders, they are too much like a dictatorship.

When another administration comes, previous executive orders can just be reversed. This makes for instability, and not what the founding fathers intended for this country. Permanent change needs to come through all the governing branches and be agreed upon by a majority, not just a single party.

The only way this will happen is if the country returns to a sure foundation, and that can only be found in Scripture. The United States has never been fully Christian, but it was founded upon Christian principles and depended upon at least general biblical foundations to stay secure. While we have a few year's reprieve, Christians need to boldly proclaim the gospel and change hearts and minds. This is the only way we can have stability, but I am afraid is the most difficult.

In this quad life, I hope to take every opportunity to speak I can. Unfortunately, few Christians actively share their faith and will waste the time given. I pray this will not be the case, but we'll have four years to see.

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.

Are You Prepared to Flee?

The new year is less than two weeks old, and the last seven days have seen devastation in various forms in the country. First, a winter storm hit from Kansas, to Missouri, Indiana, and further east. It dumped large amounts of snow, closing many roads and leaving motorists stranded on the roads.

Second, wild fires in southern California went through suburbs of Los Angeles burning multi-million dollar homes to the ground. Some of the residences were right on the beach with a clear view of water, but they still couldn't be saved. Occasions like these make me think what I would do in these situations and consider how to prepare.

Thankfully, Iowa was spared from this latest winter weather, but we're not unfamiliar with it. For the most part, if you stay home and don't try to head out, it won't be a big issue. In my situation, it likely means no caregivers for a day or two, but that's about it. My town mostly has underground power lines that aren't affected by snow and I try to make sure I have plenty of supplies on hand. Fire is a completely different situation though.

In California, some residents waited until the last minute to evacuate, or chose to stay home and try to protect their house with garden hoses. I saw reports that people were filling their cars with belongings, only to abandon them in grid-locked traffic and flee on foot. The vehicles then had to be bulldozed out of the way for fire trucks to get through.

If I had to evacuate quickly, it would be a mess, especially if I was in bed. Using my lift takes about 10 minutes to get me in my chair. Along with my wheelchair, I would also need my backup diaphragm pacemaker and the wires and brackets that go along with it. After breathing and locomotion, I also have equipment for bathroom needs as well as clearing out my lungs. Just thinking of it all would likely take more time than I had.

I can be thankful that God has not allowed such a situation to occur in my quad life. However, it's something all of us should probably have in mind, and prepare an emergency kit, just in case. Now that we're starting a new week, I pray it will be calmer for everyone. Whatever may come, it's good to remember that God is in control.

Starting Over in a New Year

Another week has elapsed since my last entry. In those seven days, we have had the end of one year and the start of another. Many people make various resolutions for each year, but I tend to just continue with my regular routine.

In 2024, I did a morning reading plan of reading the books of the Bible as they were written chronologically. It was a different way to study, but it isn't a plan I wanted to do again. I'm still learning about the background and settings for each book, but do know a few things. It is fairly widely accepted that Job was the first book written, even before Moses started writing Genesis. However, Job was nearly halfway through the year according to the reading schedule. Therefore, I questioned it's accuracy.

For this year, I'm reading with a friend to help encourage her to continue. Unfortunately, when I went to restart the chronological plan (Genesis-Revelation), my usual web resource wouldn't let me. I reported the problem, but so far have been guessing what chapters to read each day. It won't be long until I'm staring at my computer screen in a morning sleep haze wondering where I left off the previous day.

I noticed that I again met my goal of blogging at least once a week in 2024, making it a full decade of this achievement. With my hospital stay and long recovery, I wasn't sure if it would happen, but long reports of the experience helped. I hope to do the same this year, but likely won't add the challenge of weekly pictures as well. I do like breaking up solid text blocks though, so I won't go completely without graphics.

Currently, those are my only plans for the year. As always, it depends on my caregiver schedule in what I can do. Two out of the the first three day shifts this year went without help, and winter is really just starting. That is a regular part of the quad life, and I'll continue to look to God and follow where He leads me.

Have a great week and year ahead!