Sunday, September 13, 2020

It's the Weather, I'm Sure

A week ago today it was a sunny, warm, day with a breeze and it was very nice day in Iowa. Coming home after preaching, I had a renewed spirit of energy that I haven't felt in a long time. It was very refreshing to again be in fellowship with other believers, getting to be used to serve God, and eat a Sunday lunch with my family. Much of my enthusiasm bubbled over into Monday as well as I took time to work on my book again. Then Tuesday came, and so did the change.

Part of the quad life is that I'm unable to regulate my temperature very well. I can get overheated fairly easily and also rapidly get too cold. Everything has to be just right in order to be doing well, especially when I haven't been outside very much. Over night Monday, a cold front came through Iowa so that 90° high from Sunday turned into 50° on Tuesday.

My dad reluctantly turned on the furnace, but I was still cold. Instead of sitting in bed with just my normal t-shirt and shorts, I also had a sheet and a blanket. Along with that, I was also tired and could hardly get the energy to do much of anything. Two days after my first venture into the public, I started wondering if it was more than just weather changes.

After giving Sunday's message, there was a song, and then I gave the parting blessing. During the singing, I ended up facing the congregation the entire time. That meant about 100 people were belting out God's praise towards me. I also talked with several people after the service, but I didn't watch distancing guidelines very carefully. Was it possible I picked up something, including the virus?

As of Friday, there were reported 73,547 cases of covid in Iowa. That means 2.3% of the state either currently has the virus or has had it. Therefore, you have a 97.7% chance of not encountering someone with the disease. With that statistic though, there have been some outbreaks in my little town of 10,000.

From Tuesday through Friday, I pretty well felt the same as the cold, wet, cloudy weather continued. Friday evening, after being cocooned in blankets, I finally felt warm and more energetic again. As I write this on late Saturday, I again feel back to myself and sit here in my normal configuration. Waking up with slightly sore lungs this morning didn't help the virus wondering, but it subsided quickly.

I don't plan on getting anything checked out. Especially with the reports of multiple false positives given for tests. I stopped watching the news stations a few months ago, but the constant pushing of doom and pandemic can still get to me. I'm thankful to be feeling better again, and for the weather returning to normal September conditions. Whatever comes, or doesn't, I look to God's peace and trust His plan.

Sunday, September 6, 2020

Living in Peace

This year, it seems like everything is going wrong that could go wrong. First, the world basically shut down due to the virus. Then riots started and proceeded to destroy cities and get rid of police departments. In Iowa, we also had an unusual storm, a derecho, that caused a lot of damage to crops and buildings.

In other areas, churches have been singled out for closure or face penalties for meeting. We are also getting closer to another election where the candidates couldn't be much more polar opposite than each other and have potential to drastically change the country. With all this going on, I preached this morning about having peace in our lives.


Reading through the Bible, we can see various scenarios where a person, or country, looked to be headed for trouble. However, God used it for His glory and according to His purposes. In Genesis, Joseph was sold as a slave by his brothers. About twenty years later, God used Joseph to save Egypt, and his family, from starvation.

In Exodus, just as Israel finally left Egypt, they appeared to be stuck between the sea and Pharaoh's army. Instead of doom though, God brought His people through the sea on dry ground and showed His power by drowning the Egyptian army. In Philippians 4, Paul says he knew what it was to live in good times and bad. No matter what, he relied on God's strength to get him through.

As part of the sermon on the mount, Jesus said in Matthew 6:31-34 to seek His kingdom first and not worry. This can be hard to do in challenging circumstances, but these are times when we especially need to rely on God.

Living the quad life, I've had times of concern and let worry get to me, as regular readers will know. As a Christian though, I can be like Peter was in Acts and sleep soundly knowing God is in control. If we have repented from our sins, and trust in Jesus alone for salvation, we can have peace that surpasses all understanding. It's not a guarantee of an easy life, but gives a correct outlook for what is to come.

Sunday, August 30, 2020

Yes I will, but first...

With everything going on this year, churches and businesses closed, I was starting to guess I would not have opportunity to preach in 2020. In the last few months though, two congregations have asked me to help fill their pulpit. I gladly accept the chance to present God's Word, but I need to be able to access the building as well.

It has been thirty years since the passage of the Americans with Disabilities Act. The ADA has accessibility requirements for public businesses, but churches are not required to meet them. It is recommended that places of worship make provisions for full access, but they don't have to make changes. That's especially the case with older buildings.

Before the first church even talked with me, the janitor talked with my mom about me getting into the sanctuary. They do have an elevator, but I have come across elevators that I don't fit in. When I was called, I accepted to preach on two different dates, but asked to test the facility as well. The janitor and I worked out a time, and I was able to test the access and see if anything would need to be adjusted. It looks like it will work well though and my first visit as substitute preacher is scheduled for next week.

I also received another request from a different congregation for later this year, and accepted with the same clause. My parents were able to scope this facility out yesterday and it is an older building, but has added ramps and an elevator that made it accessible. Therefore, I now have three times I'm scheduled to preach in the next three months.

In many ways, church accessibility is a catch 22. A congregation can say they don't have anyone with mobility issues attend, and therefore don't want to add the expense of modifications. However, without the changes, people like myself are unable to attend and show the need. In the three years I have been licensed to exhort (preach), I have only had one request from a congregation with a completely inaccessible facility. The primary barrier has been getting asked to preach in the winter, and not able to accept due to weather concerns. It's part of the quad life, but I don't like saying no.

Next week will be my first time inside a church building since March. Preaching to small congregations and getting to fellowship with them is something I am eagerly anticipating again. I pray though that more strict regulations don't come again though and make it so church can't meet. I will see what God has planned for the months ahead.

Sunday, August 23, 2020

Printing a Button

For 30 years, I used a tracheostomy (trach) to connect to my ventilator and help access my lungs to clear them out. However, I had to use a special size that required some work when I ordered new ones. Eventually though, it always worked out and I got what I needed. In 2015, I switched to a trach button and looked forward to easier replacement parts. Unfortunately, that didn't last very long.

Just like my trach, the button has two pieces. An outer sleeve that always stays in my throat and a button, or vent adapter, that slips into it. The button completely seals off the hole in my throat so I breathe through my nose and mouth. It can get dirty at times, so I change the button once a week. I had a set of three, so I could have one in use and two for cleaning and backup.


Somehow, one of the three went missing at some point. I'm guessing it was during one of my camp trips that it may have been left behind, but it was never found. I wasn't comfortable with having just one extra, and went to order another one. In that process, my equipment company learned the button I use was no longer available, and hadn't been for about a year. That was over a year ago, and I have been searching for a solution ever since.

The button is nothing other than a block of plastic molded in the proper shape. I wondered if a 3D printer could be a solution, but wasn't sure where to look. I brought up the problem with my ENT last month and he knew someone that had made printed solutions for him before. Over the next few days, I released my one spare plug to a nurse I had barely met for her college age sons to measure and print. It was quickly returned to me, and I waited for the results.

After several email exchanges, the final product was in my position. Three new blue plugs to test with my external sleeve. This week, my nurse and I tried the new buttons in my spare outer sleeves. Two of them fit well, but one didn't. The printer couldn't quite get them smooth, but they look like they should work. As of this writing though, I haven't tried them in my neck. That may come as a future update when I feel adventurous.

I'm thankful for God's provisions throughout the life He has given me. Living the quad life has its challenges, but at least it means few days are boring.

Sunday, August 16, 2020

Sticky Face

For over 25 years, I only used my nose for breathing out. If it was a little stuffy or clogged, it didn't make much difference to my breathing. Now that I have uses it both directions for a few years, the trouble of stuffiness has become an issue.

At night, I sleep completely on my side at about 90° to the bed. It's great for getting my back off the sheet for once, but my left side is also very difficult for breathing. I try to struggle to bring in air, but my nose is just too tight and I often end up on my back again. It's not very conducive to sleep and doesn't help with skin trouble either. Therefore, I talked to my ENT about it a few weeks ago.

He said two parts of the body of the body continue to grow with age, ears and nose tissue. I would also add lower abdomen, but this was new information to me. Investigating further, he noticed my nose looked fairly closed. It's likely due to not getting full use for so long, but that can't be changed. The doctor said I had two choices, extensive surgery, or try a breathe right.

Nose itching
I haven't added any surgeries to my extensive list lately, but opted to try the second option first. The first struggle was figuring out how to get them to stay in place. My night nurses would hold it in place tightly, but it kept popping off as soon as they let go. One tried rubbing the skin with an alcohol wipe, drying, and then applying the strip. Thankfully, this process worked for at part of the night. Therefore, in order to sleep, I now take 2-3 medications and also use alcohol every night.

Since I sleep with a pillow over my head, and on my side, the breathing aide frequently comes at least partially off during the night. While it's place though, it is much easier to breathe. When it comes off in the morning, my nose is left with glue on it. Even after washing, it doesn't fully come off until it wears off.

My nose is something I can feel very well, especially when it itches. Since I try to be as independent as possible, I frequently itch my nose by pushing my lip up either on my own or with my mouth stick. I noticed my lip kept feeling sticky though the last several days, but wasn't sure why. It finally dawned on me that it's likely coming from the glue residue on my nose. Such is the quad life, getting myself in sticky situations.

I have been attempting to wash more, and itch less, and it seems to be helping. I'm thankful for simple solutions and learning to adapt with changes. Next week will be another project from this doctor's visit, if my mouth isn't stuck shut.

Sunday, August 9, 2020

Down to Two, Maybe

I have been making my regular summer visits to my doctors since mid June. A few weeks ago, I saw my dermatologist to check on my pressure wounds. They have been doing well, so I was looking forward to hearing his comments.

One of the areas has been giving me trouble for 13 years. Thankfully, as we had hoped, the doctor said it looked like there were no longer any open areas, just new tender skin. Therefore, he decreased treatment from two times a day to only once a day a few times a week. I still have two other open areas, but I was very thankful to hear the good report.

Every day, I also check my skin with mirrors to monitor problems and see if anything needs attention. Looking at an area that has had tape and gauze for over a decade to just observe skin again was exciting to finally see. Yes, I get enthused over odd things, but it's part of the quad life.

Thursday morning, I had an early doctor's appointment in Des Moines that didn't take long. Instead of coming straight home and in bed, I decided to enjoy the nice weather and free time. After a picnic by the river, Sara and I took about a casual stroll around the bike paths below the nearby dam. It felt great to be out enjoying God's creation and giving thanks for His care.

Friday afternoon, my supervisor from the nursing agency came for her regular 60-day paperwork. As part of it, she measures and documents my skin problems. The two areas were 0.1 cm smaller than the previous visit. It isn't much progress, but better than nothing. However, carefully examining the third area, she found a tiny opening in a fold of skin. I'm not sure if it was there when I saw the doctor and he missed it, but it wasn't what I wanted to hear.

With or without the new finding, I will still be continuing my schedule of sitting for 45 minutes and down for several hours. It is what I have become used to the past few years anywhere and I have almost forgotten what is was like to have more time. No matter what, I'll continue to rely on God's healing and direction, whether I have two extra holes or not.

Sunday, August 2, 2020

August End

Every morning, I say good morning to Alexa (Amazon Echo) and hear something about the day. Yesterday, she said August 1 means the start to the last month of summer. This year, it feels like summer hasn't really happened.

I have gone out on the deck a few times this year to get sun on my legs, but that has been pretty much all I have done. Normally, I enjoy getting out in the warm months and be active. Getting supplies at Walmart when school is out can also be an adventure. I have run into kids I've had in class before and it's fun to watch what mischief children can get into when parents aren't watching.

Of course this summer, the world has been told to stay away from everybody, wear a mask, and most activities were canceled. The few doctors appointments I have gone to say masks are required to enter, but most of my specialists eagerly say I can take mine off and allow for better breathing.

A few days ago, I read a lengthy article from several doctors saying how masks really aren't needed for most people. It also says that effective treatment is available, but the information is being suppressed. Last week, Grace Community Church in California, with Dr. John MacArthur, held church despite California's restriction that church services not be held. I watched the full sermon, as I often do, but agree with the reasoning to meet.

In a few short months, America will again have presidential elections. An increasing number of reports are saying the pandemic will be used to persuade voters and likely return the country to another lock down. I pray it doesn't happen, but fear it's likely to happen. Especially depending on election results in November.

As 2020 continues, it is a year that will be remembered, but many want to forget. Much of the world seems to be heading toward complete chaos without any control, and sound similar to what has been predicted in the Bible.

For the last month of summer, I hope to get out a few more times. If the quad life will continue at home for the rest of the year, it will be another long season to come.

Sunday, July 26, 2020

Doctor Changes

As you can imagine, living the quad life means I have several doctors. I have my general physician (GP), along with a variety of specialists. As the decades have passed, some of these doctors have changed due to retirement or me moving on in life from pediatric to adult care. Most of them have been around for many years though.

One of these specialists has been my pulmonologist, Dr. Hicklin. After my first pulmonary doctor retired, I was transferred to Hicklin. I don't remember the exact year, but it was somewhere around the mid to late 90's that I started seeing him.

Dr. Hicklin
Photo from the Iowa Clinic
For someone that can't breathe independently, I thankfully have very little trouble with my lungs. Generally, I see my pulmonologist twice a year for a general checkup. We chat for a few minutes about life in general, he listens to my lungs, and that's it. The ten-minute or less visit costs insurance a fair amount, but it's what they require.

In 2009 and 2010, Dr. Hicklin was a key part in helping me get approved for my diaphragmatic pacemaker system. Again in 2014, he was also a big help in getting nurses covered with my insurance changes. For both of these situations, he helped with a lot of research, talking with other doctors, my insurance, and working to get what I needed.

Due to virus restrictions, I visited with Dr. Hicklin in May through a virtual visit. About a month later, he helped get a prescription for a new pulse oximeter to monitor my oxygen levels. This week, I saw online that Dr. Hicklin unexpectedly passed away on July 17. I met with another one of my doctors, ENT, this week who said they exchanged text messages that day and he seemed okay.

I called the pulmonary department Friday to see what I'll need to do to get switched to another physician. After more than two decades with one person, it will take time to get used to someone new, and they with me. I pray they are as dedicated as Dr. Hicklin was and that I can feel comfortable with their care.

It also serves as a reminder that we don't know when our time will come to leave this life. We always need to be prepared, and be careful to do God's will.

Sunday, July 19, 2020

Good Teeth

In 2019, I started work on getting my front tooth replaced. For the next several months, I had a gap in my mouth that made it a challenge to do any work with my mouth stick. It reminded me of being a kid, playing with my toys, and missing teeth. In March, I finally received an implant to fill the space. However, my dentist said the metal bracket that holds the fake tooth didn't adhere to the bone. Therefore, he said it needed to be redone and start the process again.

I made an appointment to see a dentist in Iowa City for late March. Before the date came, everything got cancelled due to the virus. I didn't want to go back to having a painful mouth with a hole again, so I didn't mind delaying. As the next few months passed, I didn't have any trouble with the implant and thought it felt fine.

Around June, Iowa City called to reschedule my check-up and see what needed to be done. I chose not to schedule a time and see what happened with the pandemic and how my mouth felt. This past week, I had my regular tooth cleaning along with checking how my mouth was doing.

As usual, I didn't have any cavities and plaque wasn't bad. When my dentist checked my mouth, he was surprised to see I had all my teeth. He poked around on the implant, and asked how it had been feeling. It looked like the prosthetic tooth had now adhered to the bone and was in place as it should be. The doctor said he had never seen such a thing happen before and was nothing short of a miracle.

After this entire process, I was very thankful to hear the confirmation that I thought happened. With as much as I use my mouth in the quad life, this was a blessing that will have long lasting benefits.

Now I'm back to the challenge of carefully managing time to get everything done. I can do some things while flat, but too much still results in painful gums. I pray that this will be the end of major mouth trouble for years to come, if not my entire life. Whatever comes, I'll trust God's direction and give thanks for good teeth that I can use for His will.

Sunday, July 12, 2020

On the Hunt

My family doesn't get into hunting, but this week has felt like chasing after moving targets. On July 4, my parents and I normally get together with three other adults. Unfortunately, one of them has been having several medical issues and recently went to a care facility for some rehab. It didn't feel right to have our party without her, so the five of us decided to go have a window visit.

When our group got to the rehab center, we called our friend, Lynne, to get directions to the correct window. We slowly drove around the parking lot trying to not look creepy staring in residents' windows. Lynne gave a description of what she could see, but it wasn't matching what we saw. After about 15 minutes, our hunting party spotted a building that fit the described view. Dad parked the van, and walked toward the area we thought she was.

For a brief moment, dad could be seen, but then was out of sight again. Another member of our party exited the van to attempt another try. However, the same results happened again. When the third person left on the hunt, they took the cell phone with them so he could talk with Lynne. The new strategy worked and the target was found back in a corner of the building. It was odd seeing her so close, but still using cell phones to communicate. We were glad that we could find her though and be able to spend time together. However, there have been more hunting excursions this week, without leaving home.

Every month, I order supplies for my medical procedures, including different types of gloves. When I received the shipment, it had a note that I couldn't get the sterile gloves I frequently use. On Monday, I called my supply agency to see when they may come. I was told that these gloves are considered part of personal protection equipment (PPE) and are being reserved for hospitals. Therefore, it's unlikely I can get any until the pandemic clears.

I am in a couple groups for people with spinal cord injuries, so I asked what others are doing and if they have had trouble. Most of those who responded said it had been going okay, but others have also been having difficulty. At this point, I'm still deciding what is the best strategy to find my target, but have to make due until I can find some.

While this has been going on, my primary day assistant has been gone all week for family needs. It has added to the challenge with adjusting schedules for my parents and I as well as reminding myself to keep everything in mind for what I need to do. Such is the quad life at times and I have learned to take each day on its own.

This week looks to be similar in schedule and unsure what will be happening. I'm thankful that God is in control of all things and it makes for a little less concern for each day ahead.

Sunday, July 5, 2020

Independence or Lacking

Yesterday was July 4, Independence Day in the United States. The day marks when the country became free from British rule in 1776 and is a reminder of all the freedoms Americans enjoy. In Ft. Madison, IA, a replica canon was fired from the old fort. I watched, and heard, several shots on a camera from Virtual Railfan. As we remembered the country's founding, are we forgetting about independence?

Canon smoke inside the fort.
Virtual Railfan
First, I am very thankful for everything I have been blessed to receive in America. I can freely worship God and read the Bible without fear. I know being a Christian in some nations is very dangerous and may lead to getting arrested, beaten, or even death. With everything that has happened this year though, some are wondering if freedom is in jeopardy.

For several months, businesses, schools, and churches were closed with most people being told to stay at home and away from everyone. In Iowa, most restrictions have now been lifted, but some still remain. Churches still can't be at full capacity and several places, like doctors' offices, are requiring face masks and severely restricting how many people can attend appointments. Nursing homes also don't allow visitors, making residents feel similar to prisoners. Other states, like California, continue to not allow church services to be held. At the same time, riots with unlimited numbers, or any social distancing, were common in nearly every city.

One poll found that 34% of voters believe the U.S. is headed for another civil war within the next 4-5 years. The nation is becoming more divided in multiple areas with truth increasingly difficult to discern. A large area that is being restricted is religious freedom with simple biblical truths being deemed as hate speech.

I won't speculate on an impending civil war, but do agree life as we know it is rapidly changing. I continue to pray for a return to peace, but am afraid it may be a long time to come. The only answer is for Christians to be the salt of the earth and not try to change the culture, but spread the truth of salvation and peace in Christ. This month will be a test in going out in the world, but I pray it will go well and I can enjoy what God has provided with current freedoms allowed.

Sunday, June 28, 2020

June's End in 2020

For the last few days, I have been wondering what to blog about this week. I biked three times, got a hair cut, and made another video for my vlog. However, nothing seemed very notable or out of the ordinary, until Saturday. I watched another conference through the organization of Living Waters called Evolution Exposed.

Over the afternoon, several speakers gave 15-minute long presentations covering different aspects of evolution and creation. One of the presenters, Mark Spence, was sitting in his car, parked at Huntington Beach, California. A small memorial was taking place for a surfer who recently died and that was being followed by a rally for Black Lives Matter. After his session, Mark planned to go out with others giving gospel tracts and talking with people.

As the session went, he took the subject of why any life matters. It doesn't matter what shade of skin someone has, what sins they struggle with, age, or any other category. Mankind is made in the image of God, and therefore all have God-given value and needs to be respected.

From the evolutionary standpoint, life is just an accident and isn't anything special. A person doesn't have any more value than a dog as the two just developed differently. In Darwin's book, The Descent of Man, he said that different races existed on earth. His thought was that as mankind developed from primates, some are more evolved than others. The most modern, and civilized race was represented by the caucasians of Europe and America. The lower races, such as Australians and African tribes, were less advanced and further down the evolutionary tree.

Many publications, such as Little House on the Prairie, have been removed from schools and libraries for being to racist. However, the teachings of Darwin still continue to be heard in classrooms throughout the country.

The only answer to the problems we now experience is to return to God and His word. I'm thankful for the freedom to study Scripture and apply it to this quad life. I hope to help others in the coming week to see the source of truth as well.

Sunday, June 21, 2020

Father's Day 2020

In May, we observed Mother's Day while being quarantined at home. Restrictions have mostly been lifted since then, at least in Iowa, but we will still be staying at the house for this holiday.

Most years, I am at camp on Father's Day and it goes by with little notice. At camp, and weekend days, dad is responsible for doing most of my daily cares. This year, we are at least in the state, but I can't really give him much of a break unfortunately.

For all my life, and especially since starting the quad life, I have been very dependent on dad for help. Through his employer, he has given insurance that allows me to stay home as well as provide financial support for my family. When a nurse calls off sick or due to weather, he is the one that does whatever physical care I need and gets little sleep, along with mom. The last few months have added extra tasks to him as well.

Normally, I track my own needs for basic supplies such as toothpaste, paper towels, etc. When I'm getting low, or run out of something, my caregiver and I go to the store and purchase what I need. However, I haven't been shopping since at least February, if not earlier. Mom also regularly gets groceries and similar items on her own, although dad does sometimes help with this. Now, with the pandemic, dad has been the one to brave the stores for all of us. I give my list along with my parents and he goes out, with a mask, attempting to avoid close contact with other people. It has become part of the routine now, and one I don't see changing soon unfortunately.

Jesus said in Matthew 23:9 to not call anyone on earth father, for we have one Father who is in heaven. A full explanation could take another post, but that is why I generally just use the term dad. No matter the name, I easily see an example of our heavenly Father in my dad. Just as God provides for us all our needs, dad does all he can to provide for mom and I. It hasn't always been easy, especially the last few months, but dad keeps working as he can.

This week, be sure to thank our earthly parents for all they have done, either passed or present. Also remember look to our Father in heaven who has provided us a way to be reconciled to Him through His son, Jesus.

Sunday, June 14, 2020

Non Camp Week

In 1993, I started going to CHAMP Camp. I had seven years as a camper and 2019 was my 15th year as a counselor. The last two summers have been physically very hard on me. Therefore, this is the first year since 2003 I didn't apply to be a counselor. Today, I normally would have been in Indianapolis welcoming campers, but things changed.

When you have been involved with an organization for a large chunk of your life, it becomes part of your regular life. I knew that this week would be hard with seeing pictures from my friends doing what I enjoy, helping kids. However, due to the COVID-19 pandemic, camp was cancelled. In some ways, it was almost a relief knowing I wouldn't be missing out, but I knew how devastating it would be for the campers and fellow counselors.

One of the older campers is a friend on Facebook, as well as several other counselors. When cancellation was announced, he started sharing how much it would be missed and ideas to beat the virus and save camp. While nobody will be physically together, several online events have been planned this week. Best yet, everybody can join in with the virtual camp. I won't get the camp t-shirt, but I can at least participate even though I didn't think I could this year.

For many of the kids, they frequently hear that they can't participate in an activity with their peers due to their medical needs. CHAMP Camp is the one week of the year that everything is available and you're not the only kid with a trach, wheelchair, and ventilator. That feeling will be different this week, but we still get to see kids actually interact with each other more than usual.

A few days ago, my pressure wounds received their 60-day status check. One was about the same, one bigger, and the third is basically healed. This has been part of what gave me trouble in previous years. I somewhat hope that I can return in 2021, but also know it would be a major challenge.

No matter what happens in the future, I'm thankful I can participate this year and give my dad a break from helping and taking me. I look forward to observing his day next week as well, but that will be the next topic.

Sunday, June 7, 2020

Getting Distracted

In high school, and especially in college, I could read a few paragraphs in a text book, look up from it, and not remember what I read. My mind would wonder somewhere else, if I stayed awake, while my eyes continued reading. I would like to say it has improved as I have gotten older, but I'm not much better.

For many years, I never read unless I had to as part of an assignment or my nightly Bible reading. It takes work to setup a book for me to read and some books can be a battle to keep pages open. However, in about the last ten years, I have increased reading via computer. I also now regularly read books on creation and confirming the accuracy of Scripture. It's a topic I enjoy and helps pass time while I'm flat in bed.

It's easier to keep my concentration on the books I read during the day, at least by not letting my head drift away (drifting asleep is still an issue). However, my caregiver that I normally have set me up with a book loves to talk, about anything. So that can make it challenging, but I still learn.

The biggest struggle is at night when reading the Bible. I want to concentrate on God's Word, but that's when my head goes off to other topics. I may start to think of what the tabernacle looked like and end up thinking of what to say during a school talk, sermon, or even on here. What is pictured in my head usually has nothing to do with the text.

Before long, I can be half a column away from where I last remembered and have to go back and read again. It can frustrating, especially when it continues on to when I should be sleeping. I always come up with my best writing or talking points at odd hours in the night, away from my computer.

A lot of distraction has also been happening in the world the last few months. First, the news primarily only talked about virus updates and statistics. Just as that was starting to clear up, now the main focus is on riots and who is doing what against someone else. If I hadn't watched it live on YouTube, I don't think I would have heard anything about the first maned rocket to space from the U.S. in nine years last week.

It can be difficult, but be careful not to get distracted from God's saving work on the cross. It is what the world needs the most, but will focus on anything else. It's not just a problem in the quad life, but something everyone can spend time on this week.

Sunday, May 31, 2020

Short Soggy Hair

After 12 weeks of waiting, I finally was able to get my hair cut this week. It felt good to finally get it cut, but the outing ended up being more of a challenge than expected.

The last few weeks have been wet in central Iowa with storms and rain a nearly daily event. I was concerned it would require me to reschedule, but Thursday morning looked okay. Therefore, my caregiver Sara and I arrived at my barber a few minutes before my scheduled time. We observed all the requirements of mask wearing and everything else and got the job finished.

When we were done, it wasn't raining and although overcast, the sky didn't look very threatening. Directly across the street from where I get me hair done is a small bakery that has treats my mother enjoys. Since she has been extra busy helping me these last few months, I thought I would stop in and get some for her, and me as well.

Sara and I were the only customers in the store, so it was easy to social distance. As we headed to the door with fresh bakery items, we saw it had started raining. The umbrella was across the street in the van though and the rain was too much for me to try to drive through. Sara went to go get the rain protector and return to get me.

She was maybe gone for a minute, but in that time the steady rain increased to a heavy torrent with strong wind. Sara returned holding the umbrella sideways and wearing a very damp shirt. Even though signs said we weren't allowed to use the bakery's seating, we sat and waited for the rain to decrease.

Several minutes later, it looked like we had a break and the downpour relented enough to allow me to get in the van. As we left, strolled 20 feet, and crossed the street, the small monsoon returned and we abandoned the idea of trying to get loaded and took shelter under a small overhang eight feet away from our destination.

More time passed, and Sara managed to get me in the van during a small decrease in the torrent. However, I was now fairly wet and Sara looked like she took a shower fully dressed. Driving the mile toward home, the rain completely stopped about halfway in the trip. Looking at the streets, we could see little evidence of the tropical storm we had just left.

Sometimes, living the quad life leads to interesting experiences that most people hardly notice. Sara spent quite a bit of time drying out the van, my wheelchair, me, and finally changing herself into dry clothes. This has been a year of unforgettable experiences, but I hope my next hair appointment is more subdued.

Sunday, May 24, 2020

Venturing Out

For the past three months, I have been quarantined in my house. I went out watching trains a few times, but stayed in the van and didn't interact with anyone. This week I went out in public for the first time since the start of the virus scare.

My last doctor's appointment was with my regular checkup with my urologist. It had been a while since I last had my kidneys checked, so wanted me to get an ultrasound. With everything going on, I delayed the test twice, but decided to go ahead and try this week's appointment.

I rarely do anything at my local hospital, but thought I would try them for a simple scan. However, they require all visitors to wear a mask. I couldn't think of how to make one with a hole for my chin so I could drive, so thought it could just be pushed up. When my caregiver Sara and I got to the hospital parking lot and exited the van, she put my mask on. I attempted to drive with it on my chin, but it didn't work. Making room to drive though pushed the face cover closer to my eyes. It became a constant battle to have it just high enough, but not too much. Once we got to the procedure room, the fun continued.

The technician let me stay in my chair for the procedure, but that required some gymnastics from Sara. She had to hold my arm rests up and out of the way, while still giving space for the x-ray tech to get me. It worked for the right side, but my left kidney wasn't showing up where it should.

I've been through many medical procedures, but I don't recall anyone stealing any organs, at least not yet. The next place to search was from my back, but this made for more fun. Sara pulled me forward so I leaned on her arm while the hunt continued for my missing part. This meant my mask pushed on my face, attempting to enter my eyes again, and adding to the circus that can be the quad life.

After a few minutes, everything was found and scanned and I was returned to my regular position. I was very thankful to get back out toward the van to again have a free face. Two days later, my doctor called to report all is well. That was good to hear, but I will need to attempt annual checks. I'm glad to give wheelchair experience to small-town medical staff, but may do my next one in Des Moines.

Later this week, I'm scheduled to finally get a hair cut, but with the same mask requirements. I am glad to see everything starting to get back toward normal. I pray that it will continue, and drop the required face covering.

Sunday, May 17, 2020

Opening Up, Maybe

We have reached the middle of May along with mid spring and warmer weather. People are getting out and enjoying the outdoors again, somewhat anyway. It has been two months since lock downs started due to COVID-19 and now Iowa and some other states are reducing restrictions, but not completely.

For the first time since March 8, my home church held the morning service in the building with a congregation. However, only alternating benches could be used and family groups had to stay six feet apart from each other. That limited seating capacity to about 85 and not everybody could come. My family did not venture out and instead did online service again.

Restaurants, hair salons, and other businesses are also allowed to be open, but with restrictions. Therefore, the state is starting to reopen, but not anywhere close to what we knew prior to the virus. This past week, I scheduled two upcoming meetings, but both will be conducted through Zoom instead of in person as normal.

Conference Watching Mode
Yesterday, I watched an all-day conference (seven hours at least) that featured five different Christian speakers. They gave practical messages on responding to this world that has gone Bonkers (the conference title) and every lesson was followed by a question and answer session from the audience in 37 different countries. The world rapidly switching to digital interaction has made such a meeting possible and more common.

One of the speakers used the book of Daniel in his sermon. He pointed out our trust in God is determined before a situation, not at the moment of testing. I haven't faced a fiery furnace, but these last two months have been stark reminders that everything can change quickly, and to fully trust in God alone.

I've had times of testing trust before in the quad life and I'm sure will again. Each time though can serve to strengthen my trust or cause it to shake. I hope that more people experience the first result and not the second. As life begins to return to some sense of normalcy, let us not forget to hold on to trust in God for everything.

Sunday, May 10, 2020

Mother's Day at Home

Every year, we set aside a special day to celebrate mothers. These are the special people God used to form our bodies, then help train us how to get along in this fallen world. Looking back at previous years, most family traditions are similar. Dad takes responsibility for meals, hopefully, and mom gets to have time to enjoy her favorite activities. This year, it looks a little different.

With the threat of coronavirus, most people have been staying at home. That means no going out to get mom flowers, candy, or a card to help commemorate the day. I have seen a few commercials recently advertising jewelry for Mother's Day, but I'm guessing it won't be a popular gift with many people off from work. Since many moms have been stuck at home with their children all day for two months, some may just want to get away from their offspring.

For my mother, I had to resort to sending a virtual card to her email. She and dad have been braving the stores to get supplies I usually acquire on my own. Somehow, having them pick out and purchase a card for me to just sign didn't quite sound right.

Again this year, I am reminded how blessed I am to have my mother. She normally works two days a week doing book work at dad's family's grain elevator. However, it is a common communal spot for farmers to sit around drinking coffee, solving (and possibly aiding) the world's problems. In order to help stay away from people and virus exposure, mom has voluntarily stayed home since March.

With grocery runs, and supplies, limited mom has also managed very well to keep the three of us well fed with healthy meals. She also continues to keep track of my caregivers' hours every week along with running the house.

Mother's Day 2020 will not include pictures of going out or getting together with grandmothers. Many families are liking meeting with their mothers virtually this year, but it still counts as celebrating. Thank you mom for everything you do and rolling with the ever-changing flow. Hopefully next year will allow for an increase in festivities for this special day.

Sunday, May 3, 2020

Missing Moments

April has now passed, to mostly everyone's relief. It was a complete month of quarantine for much of the world, with not doing much of anything except staying in the house. I cancelled or rescheduled a few appointments, but hope to get them done soon.

My first cancellation was a hair cut on April 2. I normally get a trim every four weeks and like keeping my hair short. Now, it has been over eight weeks since getting my ears lowered and they are starting to hide. I've seen some people take to desperate measures and do their own hair. I haven't gotten to that point, yet, but look forward to getting my normal due back instead of the current don't.

The second item that was skipped was my Botox. I get Botox injections in my right arm to reduce muscle spasms and help protect the wires and plugin for my diaphragm pacemaker. However, the drug dissipates and needs to be updated every three months. Now that I'm nearing four months without a boost, I am noticing my arm pull into my chest more when it shakes. I'm trying to make extra sure everyone keeps a pillow on my side for protection, but some of my caregivers don't. Thankfully, I haven't had any major issues, but hope I don't need to wait through July to get an update.

It wasn't scheduled, but I normally speak to a class of third graders in Des Moines in April. With schools meeting virtually, I didn't try to contact the teacher. However, I miss working with the students and seeing how they react to Mr. Joel's way of writing and interacting with God's world.

Finally, I miss getting out to church every week and fellowship with fellow believers. Watching praise songs and sermons online is handy, but not in the spring when I'm able to get out again.

In Iowa, the state is now slowly opening up again with restrictions on occupancy and keeping groups separated. My church is planning to try a regular service again in a few weeks, but my family isn't sure if we'll head out by then or not. Living the quad life has challenges, and a global pandemic doesn't help. However, I continue to be thankful for God's protection and the ability to still keep active while sheltered in place.

Sunday, April 26, 2020

Keeping Caught Up

For the last few years, I have been doing the routine of laying flat in bed for at least 2-3 hours, then sit for 45 minutes, and repeat. On flat time, I often watch YouTube, Pure Flix, and other video options. It wasn't infrequent to run out of new things to watch from my regular channels with so much down time. However, I always ran out of time to get work finished during my time upright. Now, the scenarios are starting to switch.

With everyone still at home due to the coronavirus, many people are looking for things to do, especially parents. As a result, some organizations have greatly increased the amount of material they put online. One I regularly watch is Answers in Genesis. They normally publish 1-2 videos a week that I generally watch the day they come out. In late March and all of April, they have posted 4-5 videos per day during the week and a 2-3 on the weekends. A lot of the content has been geared toward kids, but it's still interesting to watch. However, they aren't the only place with more videos.

Other resources I regularly watch are Living Waters, Is Genesis History, and more, not to mention railroad related content. With so many new videos being produced, I'm having trouble keeping caught up with everything. The majority is educational and teaches about the Bible and the world God has given us. I enjoy watching it, but am starting to get a back log in my watch list as well as skipping some updates.

On the other hand, like most people, work related items are getting slow. One of my clients that has multiple updates a week suddenly decided to do everything on their own. That change cut my monthly work in half. I have a tendency to take it personally when a client leaves, thinking I didn't work fast enough, charged too much, or they're no longer willing to work with someone in the quad life (it has happened). This time though, I haven't felt the usual disappointment and think it's partially due to trying to save funds that suddenly decreased.

I will still have plenty to do with writing and catching up on my own sites for my sitting time. Watching the increase of videos has given me more sermon ideas, so I can possibly prepare messages as well. That is if churches start meeting again and I get asked to preach somewhere. I'll see what comes in the weeks and months ahead and will use the time God has given me.

Sunday, April 19, 2020

Over 1,000 Miles


With my calendar completely empty of any activities, I have had plenty of time around the house. My caregivers have also thankfully been healthy and able to come. Therefore, I have been getting plenty of time to go biking.


I have primarily been three times a week for the last few months and have seen some good results. My legs are regularly doing at least 20 seconds on their own and have had a few times of well over a minute. When I started biking in summer 2015, they were used to being completely lazy and not do anything on their own. They're still lazy, but just not quite as bad as they used to be.

Weekly report (click for larger)
Every Monday, I receive an email summarizing my previous week's sessions and a total of what I have done since starting nearly five years ago. Since March, I have been watching the total miles get closer and closer to 1,000 and estimating when I would reach it. I thought I calculated correctly, but one session didn't record correctly due to internet trouble. So my official report read only 998 miles biked.

Finally, just before Easter, I broke the 1k threshold. There weren't any fireworks or horn blasts, just an extra digit added to my total mileage. However, for legs that haven't moved under any sort of control for 35 years, I think it's a great milestone to reach.

For equivalent, I could have pedaled from my home to Grand Rapids, MI, and back, and have miles to spare. Other destinations could be the Ozarks in Missouri or train watching in North Platte, NE. Just going one way, I could have gone to Houston, TX, Grand Junction, CO, or Washington, D.C.

In the quad life, it is rare to have my limbs actually do something constructive and not just hit and kick those trying to help me. I'm very thankful God has allowed us to make such technology and that He blessed me with the opportunity to use it.

Another week has passed with three more 3.58 mile segments in the charts. I don't know when, or if, I will get to double this achievement, but I am grateful I have been enabled to go this far.

Sunday, April 12, 2020

Easter 2020

Today is Easter Sunday, when Christians all over the world celebrate the resurrection of Jesus from the grave. It is an essential part of the Christian faith, much like Christmas celebrations of Jesus' birth. For people that don't regular attend church, their are often only two times a year they go, Christmas and Easter. Church sanctuaries are usually filled on these dates, except this year.

The shelter-at-home rules are still in place as they have been for over a month. I attended an evening church service on March 8 that concluded with a doctor and county health supervisor saying to be cautious about the coronavirus and advising to limit contact with people. That was the last time most churches in my area had services in their buildings. Since then, it has quickly become the norm to go to YouTube on Sunday morning and watch a message that was recorded a few days earlier. Worship music is also included from singers staying as far apart from each other as possible.

Two days ago was Good Friday. My family, and church congregation, normally go to a late evening service that includes taking of communion, singing and reading about Jesus' crucifixion, and leaving a dark, quiet building. This year was watching the service online, drinking cranberry juice from med cups when prompted, and quietly listening to my church's talented musicians sing.

At this point, some predictions say the United States will start leaving homes and resume regular activities in early May. Others have given dates in early summer, and some say not until November. Whatever the date, I'm fairly confident life as we new it in early March will eventually return. When it does though, what will the church look like?

One conservative Christian commentator I watch predicts people will be even more hesitant to physically attend a service and just opt for online viewing. One friend I talked with said her family is enjoying sitting at home Sunday mornings, in pajamas, and watching sermons and singing. I admit that I somewhat do as well, but it is not church. Sunday worship is not just listening to a sermon, but also fellowship with fellow believers.

At some points in life, including the quad life, worshiping in person isn't always an option. However, speaking from experience, it can quickly become a part you miss and look forward to joining together again. Hopefully that will again become reality, but it could take even longer than other aspects of life.

No matter how we worship, remember Jesus' death and resurrection nearly 2000 years ago. Christians serve a risen Savior that offers a free gift of salvation for all who truly repent of their sins and trust in Him alone. If you haven't done that already, please be sure to do so now, before another day has passed.

Sunday, April 5, 2020

2020 Picture Challenge

My mom likes to scrapbook. It's fun to look back at old memories and see what was happening and remember vacations or something our family was doing. For a few years, she has taken on a goal of taking one picture per day. It would be best to be something unique, but also just ordinary activities as well. Some years it's a picture a week, once a month, a group of people, and different varieties.

In January, I started the first few weeks with adding a graphic, or picture for non-webmasters, to my blog. Without intentionally meaning to, I added something every week of January and into February. When I noticed it, I thought it would be a fun challenge to see if I can add some type of graphic for every blog entry this year.

Now that April is here, I've managed to get through the first quarter of the year with adding something. If I plan ahead, I'll try to include pictures of what I'm doing. However, I don't often plan and come up with something on Saturday afternoon or evening.

For a few years, I have had an account at an online store that sells pictures for use in advertising, web sites, or anything related. Every week, they offered one picture you could download for free. I don't like passing up that price, so I now have over 400 generic photos I can sort through and use as well.

When the year is complete, if I find something each week, it should be fun to see what I thought pertained for every topic. I have come back to old posts to try to jog my memory about a certain time in life. Clicking on a month, I'm often greeted with just a long block of text with different headings. I like reading, but something to add visual appeal always helps.

Today's picture is just me sitting here as I wrote this. It's a very common scene for my quad life, but I never know what the view could be in a few years, or months, ahead. Celebrating Palm Sunday and Good Friday by video this week will be strange. However, it's the new normal we have become familiar with this past few weeks.

Sunday, March 29, 2020

Modeling Bug

A few weeks ago, I made a video about how I do model railroading with my mouth stick. Unfortunately, it somewhat started an itch that I can't scratch.

I have enjoyed trains as long as I can remember and part of the fun is doing model trains. It's to get out by the tracks and go railfanning (watching trains), but weather doesn't always allow it. Therefore, working with small versions of them is the next best thing.

In junior high, my English teacher was also a rail enthusiast. He and I went out to watch trains several times in the summer, but he also formed a train club. A few other boys in my class were in it and we would spend time after school on Fridays putting together model trains that we could beg from our parents.

Mr. Muether was an excellent teacher and he did a great job of making it so I could interact with my classmates more and get to be an early teen. Some of the club's field trips, and rail camping, are fresh in my mind nearly 25 years after they happened.

Dad and I eventually built a train layout in our basement, just below my bedroom. He got the table top made, foam laid down, and tracks arranged with hills and curves. I don't remember how long that took, but the layout hasn't really progressed beyond that now for well over ten years.

Unfortunately, life can get in the way of things you enjoy and would like to do. With dad's busy work schedule and my very limited time up, we have extremely little time to give to our hobby. This current quarantine situation hasn't helped either. I could be in my chair likely by the layout right now instead of writing this. However, with churches doing online services, I have had a busy week helping organize and needed my sitting time to get work done.

Since making the video, I have been watching more model train videos and "window" shopping for items I like online. It's part of living a busy quad life and being sure to help others first. This week, and the next, look like they will still be at home. Maybe I'll get to scratch the modeling itch yet, but time will tell. I'm thankful to be safe at home and healthy and able to stay busy.

Sunday, March 22, 2020

What Will You Answer?

I enjoy reading all of God's Word, but some passages more than others. For the last two nights, I have read one of my favorites, Job 38-41. If you haven't read it lately, or ever, go read it again carefully, slowly, and let each question take time to process. Everyone is home anyway, so it's something constructive to do.

The question most people ask is, "How can a passage in Job be one of your favorites? Isn't the book about a man's suffering?" Yes, it is, but that's not what I enjoy. During Job's interaction with his friends (who are correctly called miserable comforters), he is positive the suffering is unjust and wanted to question God. Job gets that opportunity in these chapters, but only after Job hears 70 of God's quandaries first.

Chapter 38 starts basically quizzing about Genesis 1 with God asking who made the earth and the stars. They continue with asking if Job controls the storehouses of snow, rain, hail, and lightening as God does. Through the following chapters God goes on asking about various animals, describing them very clearly, and who made them. I like the description of an ostrich, that God did not give it much brains, but has blessed it with speed. Other creatures such as the behemoth and Leviathan are not familiar to us today, but looking in the fossil record and ancient accounts of animals reveals likely candidates for these amazing creations.

When Job responds to God's inquires, he puts his hand over his mouth and realizes how great is the Lord. Job repents in dust and ashes and to our knowledge, did not get a response as to the reason for his testing.

Living the quad life, and during times of trouble, it's common to hear people ask that if God is in control, how could this or that tragedy happen. The short answer is that we live in a fallen world where tragedies are permitted (such as Luke 13:1-5). However, other possibilities also exist due to judgment (Deuteronomy 28:58-63 sounds very familiar to today).

Like Job, each and every one of us will be questioned by God upon our death, whether you believe in Him or not. At that time, every idle word and action we have done in life will be reviewed. At that time, what will your answer be? All we can do, like Job, is repent and trust in Jesus alone to cover our sins.

Sunday, March 15, 2020

Proper Corona Perspective

The saying goes that when it rains, it pours. However, I think this week has been closer to a hurricane in comparison.

Picture from LA Times
Unless you live under a rock, and probably even then, you are likely well aware of all the coronavirus news. Basically within a week, much of the country has shut down with severely limiting flights from over seas, closing Disney World, schools, churches, ending sports seasons, and much more. People have hoarded supplies, such as toilet paper, in order to stay inside their homes and not spread infection.

Taking precautions is not a bad thing, we need to care for the bodies we have while living in a fallen world. I'm limiting my outings and trying to avoid crowds. However, we also need to attempt to keep a clear mind and look at the full picture. At this point at least, the number of people with coronavirus, and related deaths, is much fewer than the flu and other illnesses. Also, no matter what we do for preventing illness, we have no ultimate say in it.

Isaiah 45:7 says in part, "...I make peace and create calamity; I, the Lord, do all these things." We need to remember that in every situation, God is in control. In my nightly Bible reading, I started with Job earlier this week and again see how God allowed suffering as a test. We also need to keep in mind that at some point through some way, (sickness, injury, or accident) everyone is going to die.

Statistics say over 151,000 people die around the world every 24 hours. God tells us it is appointed once for a person to die, and then face judgment. Only those that have truly repented of their sins and trust alone in Jesus' saving grace alone (not based on works or good deeds) will receive eternal life. For those that haven't, they can only look forward to eternal suffering, worse than anything experienced in life.

Whether it's soon or in several weeks, or months, the coronavirus pandemic will pass. After that, life will likely get back to normal. Until then, use this time as a reminder how quickly life can change. Don't wait until you're sick or suffering from some disease to come to God. Let today be the day of salvation and look forward to a new heaven and earth where there will no longer be any death or suffering.

Sunday, March 8, 2020

Fuzzy Was He

In November, I thought it would be fun to try the no-shave November. When the month ended, I decided to give a beard a try for a while, that time has ended.

For four months, I grew out my beard, but trimmed a few times to keep it under control. I liked it, but it also got annoying. I have dry, and oily, skin that likes to flake a lot. Even with washing my face frequently, my fury chin kept the flakes captured. The controls on my chair looked like someone had splattered white paint on them when I was up for a while and dark shirts resembled a snowy field.

With my mouth currently feeling okay and warm weather approaching, it was time to free my chin again. Now, it feels nice and smooth on my lip again and I no longer feel like I'm eating hair. It's also much more comfortable on my pillow at night and I can once again grab things between my lip and chin, like the bed sheet, and move it.


Looking in the mirror, bearded Joel reminded me of Abraham Lincoln with a shorter face. I did somewhat get used to the furry look, but I think I prefer the clean cut much better. It was a fun experiment, but I don't believe I'll be repeating it soon. However, if (or when) I have a painful mouth again, it may get a few day's growth.

Also with the quad life, I was starting to get concerned about hair around my trach button. We generally clean around it multiple times a day, but some strands were starting to gather in the area. I can't say I have tried it, but breathing hair into my lungs doesn't sound like a good idea.

This week ahead looks to be starting the busyness of spring already. I will be sure to take enough time to fully shave though before heading out.

Sunday, March 1, 2020

Tooth Trouble round Two

For nearly two years, I have been dealing with a bad tooth. After getting it removed in late June, I have been dealing with a gap in my front teeth. On December 9, I received a metal bracket that would eventually be the anchor for my new hardware. However, I was told I needed to wait three months for it to anchor in the bone first.

In January, I saw my regular dentist for a tooth cleaning and I scheduled appointments to finish my mouth work. The first one, for mapping my mouth, would be in late February with getting the tooth on March 31. This sounded great, but the dentist called to say funding for the implant expired on April 1 and he wanted to have earlier appointments in case of delays.

Therefore, I went in on February 4, less than two months after my bracket installation, to get my teeth mapped for the false tooth. It required a lot of work with the metal, but was eventually complete. Four days later, I noticed the area was much more painful than it had been. However, another quick check at my dentist looked okay.

Due to a cancellation, I was again bumped up from an early March appointment to this past Tuesday to get my tooth back. After messing with it for so long, I was looking forward to receiving the implant and having a full set of teeth again. However, as the false tooth was screwed into place, it was VERY painful. After two rounds of getting it in place, I was finally granted some pain relief.

The last step was to put a tiny torque wrench on the tooth to get it snugged in place. It was at this stage my dentist noticed the metal bracket was turning as well. It wasn't attached to my jaw bone as it should be and the tooth would not install properly. He also couldn't remove the tooth without taking the entire bracket with it.

Instead of being done with this entire process, I now have to start over again. I'm scheduled for an appointment in Iowa City in late March, when I was originally going to get the tooth, to likely have to get another bone graph in my jaw. Six months after that will be another bracket installation and then three more months until I get my tooth, again.

I currently have my false tooth in place, but it doesn't take much to make it sore. I got used to not having it and am considering just going without one. If the quad life wasn't so dependent on mouth use, it would be different, but that's not the case. I will see how God leads me on this path again, but will make sure to give the full waiting time if it comes again.

Sunday, February 23, 2020

Falling Lips

Most days are pretty similar and go as planned. Unfortunately, there are times that quickly make you aware that good times can end without warning.

On February 15, my parents and I had a Valentine's Day party with three of our family. The six of us regularly get together during holidays or just any occasion. I'm the youngest by about 20 years, but we still all have fun together.

After supper, we played a card game that was new to our group called Cover you Assets. My strategy ideas didn't always work, but it was still fun. The evening passed quickly and it was soon time for my night nurse to arrive. Before that though, we needed a group picture with our large sucker lips.

Unfortunately, other priorities came up first and we couldn't get to it before my night nurse came.

Sunday, dad had a sore back due to lifting paper at work and wasn't able to get me in my chair for church. Early Monday morning, February 17, it was my turn to experience unplanned circumstances.

I woke up with my stomach not feeling well and it gradually grew worse. Monday night into Tuesday, I was starting to wonder if I was heading to another hospital stay with a tube in my nose. Thankfully, it started to get better Tuesday night into Wednesday and I was thankful to not have any unscheduled vacations. I'm still not eating much and have been having some problems, but I'm praying they all stop soon.

Living the quad life or not, we need to be prepared for almost anything at any time or location. When something comes, the only thing we can trust is God's is in control and to look to Him. This week will hopefully come closer to normal again, but normal can get boring sometimes.

Sunday, February 16, 2020

35 Years of The Quad Life

We are never guaranteed any time beyond the present. However, assuming I'm still around this coming Thursday, February 20, it will mark 35 years since entering the quad life.

On February 20, 1985, my parents could not have guessed how a simple trip to Des Moines would change their lives as well as mine. As a three-year-old, I was only beginning to understand the world around me and didn't know what terms like vent-dependent or quadriplegic even meant. However, God knew the plans for the life He had given me and provided just the right person to help me breathe at just the right time.

Doctors said I shouldn't go home, and needed to live in a care facility in order to stay healthy. My parents knew differently though and took me back to our house after seven months in the hospital, along with 24/7 nursing care. In the 3.5 decades since then, I have been able to go all through mainstream school from preschool through college and now stay active in various roles.

1985
At the time of injury, my parents were told I had a life expectancy to around age ten. As statistics have changed, I have always already out-lived the new numbers. Currently, the average for my injury level and age say I have about 30 years post-injury. Once again, I am already beyond that, but understand where they come from.

In 2019, three other vent-dependent quads I knew well passed into eternity. Two were kids that were only ten years post-injury and the third was a man in northwest Iowa that was given 30 years. I know a few other men that are just a few years behind me in injury length and two that have been given more time.

2020
Through all these decades, I'm very thankful for the multitude of blessings God has given me. I have loving parents that do an extreme amount for me as well as an abundance of caregivers that have done everything for me. Then there have been places like camp that I was able to spend 22 summers almost forgetting I had any challenges. Further graces such as reliable wheelchairs, transportation, mouth stick use, diaphragm pacemaker, and more than I can list have also greatly helped along the way.

Many challenges have also happened that I sometimes wondered how I could get through. No matter what came, I could always depend on God's plan and everything would work work according to His purposes. It is very true that I look forward to the end of my time in this body, but only when God calls. Until then, I look forward to serving in whatever time remains and trying to help others in this life of SCI.

Sunday, February 9, 2020

In It or Part of It?

For someone who can't move the majority of my body, I get bored when I'm just sitting. Therefore, when I get to church on Sunday morning 10-15 minutes before the service, I count everyone.

In 2007-2008, average morning attendance was 198 people in the morning and 135 at the evening service. For 2019, day-time average was 160 and evening was combined with two other churches and came to around 120. For this year, four churches have combined for evening service and numbers don't look much different.

Christians are told to be in the world, but not of the world. We are to be distinctly separate from worldly desires and influence. However, the church in general has not followed this command. When attendance started declining, churches in the Western world tried to become more relevant to attract people.

It started with changing music, getting rid of traditional hymns and singing new songs. Some of these are good, but more often they leave unclear direction with an abundance of repetition and some artists even quite anti-Christian. Changes continued with getting modern buildings that barely resemble churches and name changes that try to mask denomination affiliation and sound trendy.

We are to be good stewards of the gifts we're given and sometimes older, neglected, structures cost more to maintain than start fresh. However, we also need to be careful not to leave something that already works well.

Finally, the church has changed the message of the gospel. To make it friendlier, God's love is preached without telling the consequences of sin and eternal punishment in hell. As a result of all this, Christianity in the western world continues to decrease and we see the results of it in the world around us.

I continue to pray for a return to Christ for the United States and many other countries. Unfortunately, I believe it will get much worse before that comes. No matter what comes, I'm comforted that God is in control and everything works out for those who fear Him.

Sunday, February 2, 2020

Record to Nothing

At every job, certain people tend to always do particularly tasks. This generally works well and results in a good work environment. In the same sense, my caregivers follow the same pattern. Depending on who I have during the day, it will determine that day's activities. It all works out, until someone is gone for an extended period.

My primary day assistant, Joy, works 3-4 days a week. She is comfortable with getting me on the FES bike, driving the van, and helping with videos. Her counterpart prefers to stay around the house and do other tasks, so I generally stay in bed and do computer related activities.

On January 23, Joy worked her regular day and I did a session on my bike. I set a new record of my legs peddling without motorized assistance for one minute and 38 seconds. I also burned 0.2 calories per hour instead of my frequent 0.1. At that rate, I could eat one bite of ice cream once a week!

Unfortunately, Joy wasn't feeling well the next day, and I opted to skip biking to give her a calmer shift. The illness continued though and she wasn't able to work all last week. That meant other than church on Sunday, I stayed in bed every day. Joy called Friday that she is starting to feel better, but her mother is very ill and possibly near the end of her time on earth. Joy understandably wants to be with her mom, so will be gone at least this week as well. That means another week of trying to reschedule any planned outings and seeing if my other day assistant can take extra time.

Living the quad life means I am completely dependent on others for help. When someone is missing, regular activities get missed and everyone feels the change. I've noticed an increase in my muscle spasms with not getting to bike, but hope I won't need to increase meds again. Times like this make me wish I had another backup person that could help me and allow my parents to do there regular routine.

For this coming week, I pray that everything will work out well with schedule changes. Hopefully everything will return to normal soon, but I will keep seeing what God has planned for the near future.

Sunday, January 26, 2020

Finding more Archives

Unfortunately, the last few weekends have been cold and snowy in Iowa. I had caregivers scheduled so that my parents could get away for a full day, but they ended up staying in town. Therefore, since I had day help, it allowed for cleaning in the basement.

I'm quite certain most households have items that end up getting stored and forgotten about. I know I have posted on a few previous cleaning excursions, but the stuff just keeps bubbling up. After a few hours of work, I was soon given some bags and boxes to sort through.

One of the items was my old Toshiba laptop. I remember getting it in 4th grade and wondering what to do with it. Throughout junior high, it became a well used resource to help write papers and the 8th grade project of an autobiography. For a short time, it was equipped with a straw that I would sip or puff on to make dots and dashes for Morse code. A string of eight dots and dashes produced a single period at the end of a sentence. I quickly returned to using the keyboard and mouth stick to type with much less effort.

This machine was well before modern Windows' operating system and required a code to start it. After more than 20 years, I can't begin to remember what it was or now what to do with it. I was always interested in all the screws showing, so I see an electronic experiment in my future.

Other finds in this round of cleaning produced high school graduation gifts from 2000 and more trinkets I don't remember in the first place. If I keep working on my book, some of these finds do help me recall that time period and what was happening.

In this quad life, I'm thankful for all the tools God has provided for me so I can participate in the world around me. Some had more function than others, but they were all a part of some occasion. Now, a few items can go on to be used by other households while others may collect dust a little longer. No matter what comes this week, I am thankful for every item I've received and their various functions.