Another Loss, am I Now the Oldest?

Last weekend, the US, and other countries, celebrated the country's 250th birthday. While it was a time of celebration for some, it was a time of mourning for others. On July 3, while checking Facebook, I saw that my friend Brett Klusaw had passed away. He was 45 years old and had been a quadriplegic for 43 years.

Brett was one of two fellow quads I knew that had been injured longer than me. The other, Chuck Foss, died in 2024 also after 43 years of living the quad life. With Brett's passing, I no longer know anyone that has been injured longer than me. At 41 years post injury, I do not desire the title of longest living quadriplegic. It's an honor I genuinely hope somebody else holds and we just haven't met each other. Until then, I guess I presume the title whether I want to or not.

Other than being old quads, Brett and I didn't share a lot of similar interests. Nevertheless, he only lived a few hours away in Omaha, NE and I hoped to meet him in person. We tried last year, but it didn't work out due to scheduling. I last communicated with Brett in April and thought this may be the year to meet. However, he was having trouble with pressure sores (sounds familiar) and I didn't want to push anything if he was decreasing sitting time.

Most weeks, I email a friend who is a retired pastor, but had tremendous impact on my church and helped me to get my license to exhort. Even though I am decades younger, we both have the experience of losing friends around our own age. It's for different reasons, but similar feelings. My regret is that I never had a gospel conversation with Brett.

The few times we talked via Facebook messenger, it was generally discussing ideas on how to treat different challenges we were facing. His timeline mainly consisted of sports references or decorating for an upcoming holiday. It's good to see nothing posted bashing Christianity, like some I've seen, but nothing supportive either. While I know it's the Holy Spirit's role to act on someone's heart in conversion, but it has still been in my thoughts in the week since his death.

It is a reminder to never let an opportunity go by that you don't share the gospel with someone. Some ministries advocate friendship evangelism and getting to know the person for several months, or years, before getting into spiritual matters. However, none of us are guaranteed another day or even another minute in this life. Waiting doesn't always work or provide opportunity to share the good news of salvation.

For this coming week ahead, be sure to be mindful to share your faith, even with casual friends. Even though we all sin and are guilty before God, Jesus provided the way of salvation for all who repent and trust in Him alone, not our works. That is what I will try to be more active in doing as well as remembering our limited role.

Just be Happy?

Earlier this week, I started messaging with a fellow quadriplegic friend. Gary and I have known each other for several years and both live in Iowa, but rarely talk as we have different interests. This week, however, he and I have been discussing various topics. One thread of conversation touched briefly on theology, as I tend to try to direct things. Gary says he is a Christian, but that Jesus just wants us to be happy and that we don't need to follow the Bible very closely.

I could go on for several entries on these issues, but I'll try expounding on the first point somewhat briefly. Does Jesus just want everybody to be happy?

First, what makes a person happy? A state of happiness can vary from one person to the next and even depends on the day and time. However, some may be happy taking money, or possessions, that do not belong to them. The individual may think they deserve more than what they get paid, the government doesn't need full tax payments, etc. This situation breaks the eighth commandment not steal and also breaks state and federal laws. Making yourself happy may end up with large fines, jail time, or both.

Another area that makes some people happy is to view pornographic material, cheat on one's spouse, or feed attractions to your same gender. This area of pleasure breaks the seventh command and can also lead to divorce, many family problems, and even a number of physical diseases. The joy may last momentarily, but consequences of pain and heartache can last a lifetime, or more.

There are several situations that could be cited, but I think of Romans 6:23, "For the wages of sin is death, but the gracious gift of God is eternal life in Christ Jesus our Lord." Sin may be pleasurable for a season, but it brings forth death and eternity in hell, as Revelation 21:8 describes. Therefore, Jesus did not say to just be happy, He in fact had to die on the cross to forgive us sins that may have caused pleasure.

As a Christian, true pleasure and happiness comes when we follow God's will as revealed through His Word. Everything in this life, both the good and bad, is temporary. For all who repent of sin and trust in Jesus alone for salvation have eternal life.

Living eternally with God in the new heaven and earth has far more happiness than anything we can experience now. The curse of sin will be gone and their will be no more death, pain, or tears. Broken bodies will be made new and fully restored in the blink of an eye. If you're living for happiness and your best life now, then it may turn into eternal pain, suffering, and many terrors in hell.

With Easter soon upon us, let us not forget why Christ gave His life and conquered death. This is where those living the quad life, and everyone, will find true peace by trusting in Him.

Cold Week

Weather in the Midwest can change dramatically from one day to the next, and even within a day. January started out with mild temps and then had a number of days in the 50's and even up to 60! Unfortunately, the saying goes that if you don't like the weather, it will change. Even if you do like it, change will come.

This week has been quite cold with lows below zero. Friday morning, my Amazon Echo reported a wind chill of -34. These are days when I'm thankful that I can stay in my warm home, under blankets, and not have to battle the cold. It has been a few weeks since I left the house, but I can still join in various activities virtually.

I'm not the only one living the quad life who hibernates for winter. Earlier this week, I was messaging with Beth, a friend in Ohio whose son Alex has similar needs to mine. He hasn't even been out of bed in several weeks, but he has an even harder time with temperature change than me.

Their family also has trouble with funding and caregivers, but much worse than me. Other than a few hours a week, they don't have any help. With just Beth and Alex, they do what they must to keep going. At night, Beth sleeps near to her son and has always woke up to any needs, until this week.

When using a ventilator, it really dries out your airway. To counteract this, different humidification systems exist to put moisture in the vent tubes. It works, but water eventually builds up in the circuits and needs emptied out. If left, it can block air from being received or dump water directly in your lungs requiring immediate suctioning. I had both situations happen a number of times in my regular vent years and know the feeling well.

A few nights ago, Alex had the situation where water needed emptied from his vent tubing. He did his regular routine to wake his mom, but she stayed asleep through several attempts. Alex enacted his emergency protocols by having his Amazon Echo call designated people that can help, but Beth woke up before further action was needed, but it served as an alarm to current problems.

I have a similar setup to Alex, but have thankfully never had to use it. Living at home is still generally safer than a care facility, but the shortage in nurses is not just a local problem. During these cold periods, I also think of elderly who stay in their homes. It can be days before they get checked on, and it can result in major health problems if they fall, or similar, and can't get help. 

Spring is about six weeks away and the hopeful warming trend with it. Getting out in the community helps to lighten spirits and remind the world we're still here.

Computer Upgrade

I am an IT person by trade. I do enjoy electronics, but I'm not an early adopter of new technology or follow every trend and latest releases. Every few years, I upgrade my own computer to keep up with newer items and faster response times. After eight years of using my 27" iMac, I finally updated my system.

The all-in-one system of the iMac is nice, but the latest version is only 24" and may make it hard for me to use while laying flat. Therefore, my friend John and I looked at several options in various

configurations. I ended up getting a Mac Mini, which is all the computer hardware in a small box, a separate monitor, and supporting hard drives. John came from Minnesota for a few days last week to help me transfer my information and get everything running.

He arrived late Monday night and we started Tuesday morning. My computer hangs from the ceiling in a custom shelf my dad constructed. That means everything must fit in the space allotted as well. We first moved my all-in-one system to a nearby desk and started unboxing and placing all the parts. It was fun seeing new hardware, but the number of wires quickly became a spaghetti mess.

After nine attempts of various data transfer methods, everything had been moved by 10:00 that night, about 12 hours after starting. Considering the first of three sections to transfer was estimated to take 15 hours, I thought it went well.

On Wednesday, we tested my various programs and made sure everything worked well. Unfortunately, one of my backup storage drives decided to stop functioning and the new webcam is so pixelated that it's worthless. Since I do a lot of virtual meetings and video creation with that camera, a different monitor and camera will be replacing them. That is one advantage to a modular system, separate components are easier to upgrade and swap.

It was fun getting to be around John again. The project we set out to do was accomplished and the remaining changes are easy to setup. It only involves a couple wires to plug and unplug that I can instruct how to do.

I generally like the new system as well, but miss having a more compact setup with fewer wires. The voice dictation is also much better and I see future Quad Life entries being made with little keyboard use. This week will be back to regular meetings and life in general, but it's always good to spend time with friends and work toward a goal.

Calm Train Week

Last week's message went well. I was surprised, and pleased, to see a larger audience than usual for an evening service that included families. It is possibly the result of the Charlie Kirk assassination, but I hope the increased attendance continues.

This week has mainly been work on websites and quad life related paperwork. When I know more, that will likely be an upcoming post. However, I finally took a day to just do something fun, go train watching with a friend.

In Junior High, my 7th/8th grade English teacher was a fellow railfan. We became friends and went train watching a few times, even over night rail camping with a group of boys from school. It has been 29 years since I graduated from eighth grade and a few changes have occurred. Mr. Muether is now Pastor Muether and he has a small congregation in town and has several other responsibilities. He is also the secretary of a local minister's group that I attend when weather and schedules allow. After our last meeting, the two of us were reflecting on busyness of life and not getting time to do train hobbies. On the spot, I suggested a day to watch trains and we were off this past Thursday morning.

Just like old times, we headed north to Marshalltown to see what trains could be found. Sitting under bridges to avoid pouring rain, we only saw three trains and a switcher in our five-hour escape. However, it was a great time to get away from everything at home and get caught up with a friend and fellow railfan.

A few times this year, I thought of asking a couple guys from my church to come join me by the tracks. However, dad had various house projects on Saturdays and I didn't want to take his free day. Maybe just going with my caregiver is an easier route that allows everybody to do what's needed. I'm doubtful I'll get out again this year, but I may be surprised.

It Takes a Community

This morning, I preached my last scheduled time for a morning service. It had been scheduled that I wouldn't have help Saturday night. However, as the previous time, my one night nurse was willing to adjust his schedule so I could sleep prior to preaching. Therefore, he took off Friday night and tonight instead of Saturday.

From observing myself and other quadriplegic friends, our families tend to stay pretty isolated. Beyond whatever caregivers a person may have, it is generally the person's parents that take responsibility for care. Unfortunately, this is nearly, or completely, 24/7 care all year long for many years. You often hear well meaning intentions of help from church or other groups, but it rarely happens. The long-term needs and specialized care for some procedures scare most people away. This weekend though, I witnessed a change.

Friday afternoon, I had my usual medical cares done by my caregiver Sara. However, we both forgot I needed an extra chest treatment since I wouldn't get it that night. I could see she was tired from our busy day, so I offered to skip it or see if dad could get it later. No, Sara got it finished so dad wouldn't need to fit it in. It meant an extra 15 minutes to her shift, but she was willing to help.

Before I was born, mom became friends with a couple ladies she worked with. It has been over 45 years, but we remain close friends with these families and my parents have vacationed with some of them several times. By now, they are very familiar with our needs and regular struggles without nursing. Friday night, one of our friends came about 7:30 to help us through the night.

Last week, mom and I showed how we arrange my pillows and table to sit, lay flat, read, and use the computer. Friday night was review that went well. When I went flat for my final time at midnight, mom was able to rest in the other room while our friend and I stayed up until dad took over. It may have been less than 90 minutes, but it still provided a welcome break and further rest for mom.

This Labor Day weekend, let us pause and see who we are laboring for. Do we mainly serve our own needs, or are their areas we can help others more? Living the quad life makes for a lot of work, but I'm thankful for help from those around us. Every Friday and Saturday night in September will be without nursing care. However, on occasion, we may get more help than expected.

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.

Losing Another Friend

Living the quad life means you're generally living alone. Yes, I'm surrounded by family and caregivers at all times, but I rarely see any other high-level quadriplegics. There are a few other wheelchair users in my small town, other than elderly, but none have the same health needs like me. Therefore, I have learned to advocate for my needs and how to teach medical professionals.

When I was a kid, and adult, I enjoyed spending time at CHAMP Camp every summer. It was a fun week, but also a time to be around other people like myself. Thankfully, social media has allowed much easier contact for all kinds of social groups, including quadriplegics. I have posted about friends I have met this way before, and one of them was Chuck Foss.

I was introduced to Chuck through a quad friend's wife. Through initial introduction, I learned Chuck lived in Maine and received his spinal cord injury four years before me. That makes him the longest living quadriplegic I have met. For most of Chuck's SCI years, he also used a diaphragm pacemaker similar to mine. Chuck's advice was very helpful when I was transitioning off the vent and it helped me get on the pacemaker faster.

Chuck and I communicated a few times by email and video chat, but never met in person. Our most recent collaboration was helping with a Christian outreach packet he was working on. I was thankful to see his good grasp of the Christian faith and doing more evangelism than many others do.

Tuesday afternoon, I was checking Facebook, and saw a notice that Chuck had passed away a few days earlier. He was 58 years old and lived 43 years after receiving his injury at age 15. Messaging Chuck's sister, I learned he died after a major bowel surgery that did not heal properly. This post is now one month after I was hospitalized for digestive problems.

I have seen many quad friends pass away, but Chuck is the first to have more injured years than me. That means I now move up to the second longest living quadriplegic I know. I don't know if God will give me another four years, but I do pray to live it for His glory. Chuck will be missed by all who knew him, but I'm thankful that he is now free of earthly trouble and has entered eternity with a new body in the presence of God.

Trading Rolls

Most days, and weeks, go on basically the same. Each one passes onto the next with regular routines changing very little if at all. However, sometimes rolls can be reversed and surprises walk-in when least expected.

Since last week's blog, I'm thankful to report dad is fully back to himself. Unfortunately, mom came home from work early on Monday and now she has been sick all week. Her symptoms sound very similar to what dad had, but I pray mom recovers soon.

In high school, I started reading the Bible almost every night. The practice has continued now for over 25 years and increased in the amount I read. I first started with my NIV Bible I used in school. It didn't have any commentary or study notes with it, just Scripture. After completing a course on Biblical Evangelism in 2016, I received the Evidence Study Bible as part of the graduation package.

This was my introduction to the NKJV Bible and commentary included with the Scripture. Reading study notes with the text took time to learn, but I still read from Genesis to Revelation in a year, or less. I varied reading style depending on the year, but I have enjoyed it and increased my depth of study. However, I have been looking at one more study Bible for a few years, and I finally got it.

My best friend John gave me a gift certificate for my birthday recently and with it, I purchased a John MacArthur Study Bible. Dr. MacArthur is a Pastor in southern California that is very well known for his in-depth preaching and teaching. I started reading through this new study Bible last Saturday, after completing another cover to cover trip in the Evidence Bible.

Starting in the New Testament, it took me three nights to read through the outlines of the New Testament and Matthew before getting to Matthew 1. Almost every verse has commentary and I'm only averaging one chapter a night for reading. However, I'm greatly enjoying it and the easier references back to the Old Testament prophecies. I will not get through the Bible in a year in my nightly reading, but will still do so in my morning reading.

Friday morning, I finished my regular routine and was working through my morning reading when I had quite the surprise. John suddenly walked through my bedroom door! The surprise visit had apparently been in planning for two weeks, but everybody managed to keep it from me. He could only stay the day, but it was fun getting caught up in person and having him around. I did really notice my recent trouble with memory, but it was still a great time.

Even in the quad life, routines can change on occasion. This week looks to be calm again, but I will see as Christmas draws near.

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.

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.

Getting a Good Rub

When possible, I like to use natural remedies and avoid medication as much as possible. I'm not one to completely refuse them and deal with the consequences, but I do what I can. One aspect of the quad life where I really apply this practice is with spasticity, or muscle spasms.

The first item is one I regularly mention, going barefoot. Shedding footwear helps with reduction of stimulation to my body and also has many health benefits for my feet. Second, I do passive range of motion (PROM) four times a day and the FES bike as much as possible. Both of these help keep my joints loose, improve circulation, muscle mass, and have recently allowed me to further reduce anti-spasm meds I take.

This has been my primary regimen for decades. However, I heard about another quadriplegic that also received massage to help. This week, I gave it a try as well and was surprised by the result.

A friend of mine from my school years recently moved on from doing physical therapy to massage at a local day spa. After a few message exchanges on Facebook, we figured out logistics in how to make it work and see what happened.

My caregiver and friend transferred me to the table and got me positioned as needed. My limbs are small, but they have strength to them and have hurt my caregivers before. I was concerned the rubbing would set them off, but thankfully they had minimal reaction. I watched and chatted as my arms received a good rubbing, and I could feel them relax. Moving to my shoulders and neck, where I can feel, my talking decreased as I enjoyed the feeling of muscles relaxing and loosing up.

When the hour-long session was complete, I got fully dressed and positioned in my chair again. Five hours later, my legs and arms were still loose, almost floppy, and barely twitched at stimulation they normally jump at. I didn't know what to expect, but I think I have another option to try to use natural methods for muscle control. It would only be monthly at most and not during the winter (too many clothes to remove and put on), but I'm thankful for the opportunity and look forward to next time.

Honesty is Best

When I visit schools, I am sometimes asked if I know this or that person who also uses a wheelchair. Most of the time, the answer is no. However, due to connections through social media, I do know several more people that I likely never would have met. One of these individuals is Alex Malarkey and his mother Beth.

Alex and his dad, Kevin, were in a car accident when Alex was six-years-old. He received a very high level spinal injury and dad didn't have any lasting injuries. A few years after Alex's injury, he told a story that he went to heaven in the accident, but was sent back. Kevin wrote this account into a book called "A Boy Who Came back from Heaven." It was very popular and sold over 1 million copies. I believe it was also made into a movie. The problem is, the trip didn't happen.

A few years after the book's release, Alex became a Christian and boldly admitted the story was fiction, he made it up. Beth and Alex, along with others, tried getting the book taken off the market, but stores wouldn't listen. Thankfully, after years of trying, the true story was revealed and the book was no longer sold.

Now that he couldn't make money from book sales, Kevin left his wife, Alex, and took the other children with him. Alex is now 24 and lives with his mom as his only caregiver. They had been living in the same house since the accident, but Kevin decided he wants to sell it and has evicted Alex and Beth.

They went through several court sessions to overturn the eviction, but Beth's lawyer died unexpectedly in early September and left them without representation. Unable to find a place to purchase, they spent this past week moving to a temporary location until somewhere else can be found.

In many ways, Alex has a lot of the same care needs that I do. However, his injury is higher and included the brain stem which includes much more specialized care. Therefore, a house that works for his needs is not easy to find and any residence would likely require much renovating. You can watch a synopsis of his story done by Justin Peters Ministries, along with a link to help with funds.

I am very thankful for the parents and family God has blessed me with. Living the quad life is a challenge, but this type of situation is even worse in my thought. I ask for prayers for Alex and Beth that they may find a place to live soon. However, I also pray for Alex's dad Kevin, that he may truly come to God and love his entire family as he should. I keep hoping someone will buy the house and then let Alex and Beth continue to live there as renters or some type of arrangement.

Whatever comes, I'm thankful Alex came to Christ and was honest, even though it has cost him much in this life. I pray I would do the same if such a circumstance happened in my life.

Vacation Week

Iowa weather, like much of the country, has been up and down again this week. While my parents were gone, I had the air conditioner on early in the week and had trouble with over heating. Yesterday, I switched back to the furnace with indoor temps struggling to stay above 70.

When setting up my caregiver schedule, I was careful to arrange it so that I had someone every day that could get me on my exercise bike. Therefore, I had a new record of biking six days in a row. I wasn't able to record everything to the bike's database, but the sessions did at least happen.

I wasn't sure how my body would react to all the exercise, but it went pretty well. Monday through Thursday, my legs peddled for 3-4 minutes on their own each time, but only a little over two minutes on Friday. I thought maybe they had given up working, but then did over eight minutes on Saturday. I never know what to expect from my body, but I'm thankful I could have a new record of consecutive rides. This week, I will likely only get to bike once, if even that much.

It was nice having the house to myself again for the week and to see my parents have a break. The college student I have had this year offered to stay in town for an additional week after school to allow my parents to go. Now, she will not be in Iowa for most of the summer and we'll be back to a few open hours every week. Thankfully though, I am very blessed to have as many hours covered as I do.

Yesterday, I was reading a friend's comments on Facebook about caregiver experience. She, and her son, both need some assistance and rely on help. My friend had four interviews scheduled this past week with some perspectives not showing up and others declining the position an hour after being accepted. One accepted the position, trained for the job, but then didn't come for her first shift and blocked any contact.

Living the quad life has it's challenges in multiple areas. While I don't know what to expect next, I'm comforted knowing God is in control.

Virtual Children

My friend John has been a regular spotlight on this blog. He and I enjoy our visits, I play with his sons, and quite often a computer gets upgraded, or dismantled. John's oldest son is in third grade and we casually talked about me visiting his class. However, John and his family live in Minnesota and driving more than four hours for a 30-minute school visit seemed a little much. However, when you're dealing with two IT guys, more options are available.

John talked with his son's teacher and she was okay with us experimenting on her class. After a one-week delay due to a popular illness, last Tuesday was my time to "visit." I have done a few college classes virtually, but all the students were adults and also joined me virtually. This would be my first attempt with a grade school and I would be the only virtual person "in" the room.

John and I tested technology options the day before and found a good setup. I logged into class at noon on Tuesday, and we had to again go through some testing. Fortunately, we gave ourselves a full 15 minutes before the students returned from recess. With some screeching audio problems quieted, we were ready to go.

I was on a computer that projected my video onto a marker board, along with my audio. John used the camera on his cell phone to act as my eyes and moved around the room so I could see writing quality and students asking questions.

After the lesson from Mr. Joel was complete, it seemed like everything went very well. I asked the teacher to take some pictures for me so I could use them for my mother's scrapbook and I could see how it went. Looking at the photographs, I noticed she wrote different terms I used on the board as well as my special instructions of having a barefoot class for writing.

It was a fun experiment and I got to do what I enjoy, teach kids about God's world and different abilities. I'm not sure how I could make it work without John's help, but I'll keep thinking of options. Teaching the quad life virtually could be a great way to help more kids learn, and not just in central Iowa.

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.

Remembering Friends

The more years God gives a person, the more people you encounter and may get to know well. With social media, the circle of friends with similar interests can get even larger. I have written before about meeting others with spinal cord injuries (SCI) in this manner and getting to know them well. One such friend was William (Bill) Miller from Florida.

Bill was a fellow vent-dependent quadriplegic due to an accident in college. He and I initially connected through an online forum for people with SCI. When I started researching about the diaphragm pacemaker, Bill looked into it for himself as well. We had similar lists of pros and cons for switching, but concluded it would be good to try. I had successful surgery for it in November 2010, but Bill's implant procedure a few months later didn't work.

While we had similar physical needs, it wasn't all we shared in common. I don't remember the exact year, but Bill and I did an annual Bible reading plan together. It was the first time he had read the Bible completely from front to back and I enjoyed helping answer his questions. It was the first time I had the opportunity to do such a study with anyone and it helped form my thoughts for helping others.

For the last few years, Bill and I have been comparing notes on writing our own books. I let him approve the portion where he is mentioned in mine and I read where he talked about me in his. I have known many fellow quads over the years, but Bill was the one I probably talked with the most frequently. Scrolling through Facebook this past Thursday, I saw that Bill died on March 22. It was a surprise to see, especially since we had last talked in late February and he was doing well.

In August, Bill would have been 25 years post injury, I'm 37. For the past few years, several of my quad friends have died. It's part of living the quad life, but it still doesn't get easier. I'm thankful for all the years God has given me, but I still always wonder why I have been blessed with so many more than others. When my time does come, I also wonder if the friends I have made, but never met in person, will know that I'm gone.

No matter what the future holds, however long we're given, be sure to live according to God's will. We never know what tomorrow will bring, or if it will even come, and we need to always keep this in mind and be prepared.

Pre-Christmas Trucking

It's not a secret that I don't get out much and interact with friends or the public in general. I have a few times a year I specifically go for gospel outreach and of course preaching. Beyond that, my social life is pretty limited. That's not uncommon for quadriplegics, but it also leads to unique interactions with people.

Starting in high school, my friend John and I played games together online. Sometimes we were in the same room and other times half a country apart. We had fun no matter the location and could chat together as friends do. When John's kids arrived, his family responsibilities took precedence and we have only played online games together a few times since. However, I haven't completely stopped socializing this way.

At least 4-5 times a week, I watch a gamer on Twitch that goes by DerTebbers. I have talked about him before as I usually enjoy what he, or his wife DasTebbers, are playing. He also has a number of other gamers that are friends and play similar content. One of the games they play is American Truck Simulator, a game I also enjoy.

Taking a rest for real world needs

Recent updates to the simulator have made it possible to join with other truckers and have a convoy. On Christmas Eve, Der invited fans to truck with him and his friends delivering virtual Christmas presents. I joined in on the convoy and drove along with them.

This was the third time I have joined a convoy with Der and his friends. They are aware I drive with a mouth stick and are patient when my truck gets behind the group. However, the friends are able to chat together through another program I don't use, so it isn't quite as social as John and I used to be.

I am the only Christian in the group, which makes me both hesitant and excited for opportunities to join. For one, I look for opportunity to share the Bible and the gospel where possible. The majority of the conversations are clean, but they sometimes use God's name in vain. It gives an opportunity to speak, but also to be careful not to get influenced incorrectly. Even though I don't much chance to talk in the group, I also try to observe speed limits and traffic signs as an example.

Living the quad life does make for unique interaction with the public. I'm thankful for what I can do and try to use the opportunities for good. As we head into a new year, I pray I can continue to be active and be used for positive influence.

Fourth Visit in 28 Years

In June 1993, I went to my first week of CHAMP Camp. It has been 28 years since my first encounter with what would become a life-long commitment. I attended camp for seven years as a camper and have been a counselor 15 years in person and this year virtually. In 2018, I also went to the Louisville area to preach for a camp friend and a few others came to hear me. The summers I was not active at camp, I have visited at least twice and promote camp any chance I get.

With nearly three decades of involvement, I have made several friends of fellow long-term counselors as well as current and alumni campers. However, camp is based in Indianapolis and many of the people involved are from that area or further east. Therefore, I normally only see camp friends in person during camp week. However, that does change on some rare occasions.

This past Tuesday, a counselor friend came to visit for the day. Cayla and I had talked about her visiting a few years ago at camp. She would stop over during a trip she had planned to Nebraska with her family. However, this pandemic thing kind of changed plans. Therefore, we got it worked to reschedule before winter arrived and another year has passed.

Cayla's visit makes the fourth time someone from camp has come to visit me, with two of them during my camper years. It was fun getting to show her my little town and areas I like to go for entertainment. Camp also gets very busy with many people around and it's hard to find time to just talk with friends and get caught up. I enjoyed getting to just talk and actually get caught up with her, even with my parents or caregiver also with us.

She started driving early Tuesday morning from the Indianapolis area and arrived around noon. By 9:00 that evening, Cayla was ready to head to the hotel and then returned home Wednesday. Therefore, she drove about 14 hours and had an overnight stay for a nine-hour visit. I have done the same drive and stay for a three-hour visit to camp. I'm thankful it worked out and that I was able to spend time with friends twice in September.

As changes in the country and my physical needs continue, I doubt I will be returning to volunteer at CHAMP Camp. I hope this won't be the last time I see any of my camp friends in person, but I enjoyed this one as a rare treat.

Have Friends, Will Experiment

Over Labor Day weekend, my best friend John came to visit, along with his two boys. Due to last year having travel restrictions, I haven't seen them in person since summer of 2019. In two years, children change quite a lot. It was fun seeing how the kids had grown and having an active house for a few days. John and I have not qualified as children for a few decades now, and some things never change.

On Saturday, the two of us were talking, watching the boys play, and just hanging out in the house. Mom was also talking with us and said she remembered when we were in high school and she would come home to find us grinning with computer parts strewn around my room. That reminded me that my parents found my old Toshiba laptop early last year and I kept it for just such an occasion.

Digging through my collection of outdated computers, we soon found the machine that I  received around 1991. At that time, it was very useful and I utilized it in the last years of grade and junior high school. Now, it is completely useless and unable to do anything modern technology does. I always wanted to see what was inside, and that's what we did.

It took some searching, but John kept finding screws hidden in various locations. Removing them slowly pealed the plastic case away from the electronics. After a few pops that sounded curious, we were soon inside. One of the first items removed from the interior was a long, thin, battery pack. Originally, it would have helped to turn the machine on. Now, corrosion had claimed the power cell, meaning the computer could not start if we wanted it to.

Through the next several minutes, John continued to take out screws and unplug wires until the kitchen counter was covered with what used to be cutting edge technology. The keyboard and screen would not yield to further destruction. However, John's oldest son quickly latched onto the bones of the computer. The screen worked well to prop his iPad and the keyboard functioned as a tool to help with typing practice. He didn't seem to mind that punching the keys had no results, it was fine for his imagined document.

Our previous computer escapades always resulted in an upgraded, functioning machine. This time, the parts went to the curb and the bones went home with a happy boy. Living the quad life often means few close friends, but I'm thankful for when we can get to be together and enjoy mutual destruction, I mean exploring.