Sunday, April 25, 2021

School Visits 2021

In 2004, I rebuilt the website for my local Christian grade school and saw that the second-grade class did a course on disability awareness. Talking with the guidance counselor, I learned the course was watching a 30-minute video by Joni Erickson Tada. I volunteered to be a live version of the video and my school visits have continued every year since.

I currently have six grade schools I normally visit, with two of them having two grades combined. Therefore, I go to them alternating years and end up seeing five schools every year. For the last three weeks, I have spoken at four schools to seven different classrooms. One class was a third grade with the others all second grade.

With some of the COVID restrictions still in place, I wasn't sure how this year would work. When I scheduled visit dates in January, the teachers weren't certain about restrictions either, but school administers allowed me to come. My first visit was in a regular size classroom, but two classes of students all crowded into the room to hear me speak. I estimated about 40 kids were present with most of them sitting on the floor. I was frequently looking down toward my feet to make sure I didn't get too close to anyone as I moved around. A week later, I met with a class of 13 students in the school's gymnasium to allow further distancing.

Every school I have visited, I demonstrate writing with my mouth and then have the kids try the same. Hearing about mask requirements, I planned an alternate demonstration this year. One of the videos I have the teachers play is about a boy, and his mom, who was born without arms. He therefore does everything with his feet, including writing in school. I thought I could have the students try this instead of mouth writing, but it wasn't needed. I saw over 100 kids the last few weeks and maybe 5-6 of them were wearing masks. I was thankful I didn't need to learn to adapt and could see the children's faces to get feedback as I spoke.

Most of the questions asked were the same as other years, but not entirely. Two students at different schools both wondered how I deal with challenging times or if anything scares me. I might be speaking to seven- and eight-year-olds, but it seems apparent this era of lockdowns is scary to them as well. Presenting at Christian schools, I'm thankful I could point them to looking to God's Word for assurance and trusting Him in whatever may come.

After these school talks, I've felt a new sense of energy again. One school remains, but I don't visit until late May. I'm thankful God has allowed me to share the quad life I've been given and teach the next generation to use any abilities we have, even if a little different from others, to serve Him.

Sunday, April 18, 2021


Most days, my home phone gets junk phone calls. The caller ID will come up as spam, name unavailable, or various other oddities. While biking Tuesday morning, a call came with an odd name on the ID. I expected a robot voice or someone that could barely speak English and had some scheme to get my personal information. To my surprise, it was an actual local person that wanted to speak to me.

It was someone from one of the golf courses in town offering an advertising spot for the year. He said it would be in front of business owners for a full year, many who don't know how to do websites, and potential customers. The rate I was offered wasn't as bad as I expected, but still nearly four months' worth of regular expenses. I thought briefly about taking the offer, but declined it.

This isn't the first year I have let the same advertising opportunity pass. Marketing my web development work sounds good, but it hasn't ever helped before. For the last several months, I have only had between 2.5-4 hours of paying work per month. More work would be great, but it's a catch-22.

My funding for nurses and medical care is partly through government assistance. I can only have very little income and my caregivers can't show helping me with anything job related. Therefore, I would like to earn more of my own income instead of just getting government assistance, but I can't without jeopardizing what I do receive.

Friday was my second school visit out of four this month, two more are later this week. It feels like I'm at a crossroads of staying with web development and trying to keep up with the industry, or going more into speaking and writing. I'm much more inclined to try the latter and see if I can stay busy with it. If this summer stays open to meetings, it may give the opportunity to test the waters.

Whatever comes, I can always strive to keep busy in the quad life and do what God allows. I have been asked some interesting questions at schools so far this month. Next week, I will see if I can decide which was the most unique.

Sunday, April 11, 2021

Banging my Head to Beat my Chest

Not having the ability to breathe independently presents a few challenges in life. Thankfully, God has provided tools to help take care of problems living in a fallen world. The item I talk about the most is my diaphragm pacemaker (DPS), but that's not the only item I use to keep my lungs in good shape.

Since I can't control my diaphragm, I can't cough on my own. I have learned how to manipulate my breathing to somewhat mimic a cough, but I still need help moving junk around in my lungs. Since the time of my injury, I have used a chest percussion treatment (CPT) twice, or more, every night. I have nicknamed the procedure my nightly thumping, or beating, and my nurses are happy to say it's time to beat Joel.

The CPT is simply a hand-held wand that vibrates and gets moved up and down my chest and back. Combined with turning from side-to-side, it helps keep any junk in my lungs lose and easier to suction out if needed. I can't feel it, but I'm told it feels good and I have woken up to nurses using it on sore shoulder or back muscles during the night.

For many years, the machine I used was called a Flimm Fighter. It worked well, but the cord between the machine's base and wand would break after years of getting wrapped up. After I gave my machine to be fixed once, it was replaced with a newer version that has all the mechanism in one piece, with a long power outlet to the wall.

The new version is smaller, but it's heavier for my nurses to hold and the wire between the wall and unit often resembles a pile of spaghetti. This is very prone to connections becoming lose and the machine not working. This has been the case for about the last six months with trading out my CPT with a loaner to get fixed. Mine gets returned, only for the problem to occur again a few weeks later. If it doesn't work, then the only option is to pound on my chest, and back, by hand. The cycle has become annoying and feels like I'm banging my head on a wall.

I started searching for an alternate solution, but few people use a CPT anymore and instead utilize a vest that does a similar treatment with air. However, it's not an option for me due to my DPS wires. In working with my new pulmonologist, he also doesn't know of any alternatives. Therefore, it looks like the cycle of equipment problems will continue. When I received my CPT back a few days ago after another round of maintenance, the solution offered was to hit the device on something and that should help it. When you're told to hit your medical equipment with a hammer to make it work, you know it has design flaws.

Such is the quad life sometimes. I'm thankful God has provided equipment that has helped more for 36 years. However, I think more frequently I should have pursued a career in engineering to help with medical devices. I will see if everything functions this week, but won't hold my breath (I can't anyway).

Sunday, April 4, 2021

A Tale of Two Easters

Today is Easter Sunday, the day when Christians celebrate our risen Savior. All who repent of their sins and trust in Him alone can be free from eternal punishment in hell. It is a significant day in the church and one not to miss.

A year ago, many churches held virtual Easter service with many pastors preaching to a camera and worshipers watching from home. The world was about a month into the global pandemic, waiting for the two weeks to flatten the curve. This year, most churches are meeting in person again, but still with many restrictions.

I just started going to worship in person a few weeks ago, but again didn't attend this weekend. One of dad's coworkers came to work after he was exposed to the Covid virus from his son. Dad doesn't work with the person directly, but still wants to be cautious. Therefore, we are trying as little interaction between he and I as possible. However, he still needs to help me a lot on weekends when I don't have day assistance. Part of the minimal contact also means not getting in my chair and being around people.

Jesus warned that those who are Christians and follow Him will receive persecution, just as He did. Many early Christians were martyred for their faith by Jews, Romans, and other rulers. The emperor Nero would have Christians covered in flammable liquid, tied to stakes, and burned alive to provide light at night. Some countries in the world today still have extreme persecution. I'm thankful that for this year, many believers were still allowed to gather and worship.

Later this week, I'm scheduled to visit my first grade school in over a year. I'm eager to work with kids again, but I am also wondering if I'll be allowed to go. As long as everyone remains free of symptoms though, all should be fine. I also mailed the two instructors a reminder early last week and I didn't hear back. Showing up at a school without an appointment wouldn't work very well.

Whatever happens the next few days, I'll go with whatever God has planned. Just as He plans were done 2000 years ago, they are today in the quad life.