Cold Start to Speaking

As we progress through a year, certain days mark anniversaries of various kinds. Everyone has a birthday, and then you may have a wedding anniversary, graduations, and work milestones. Friday was another year of entering the quad life.

For the past few years, I have been counting to 40 years post injury. Just like turning 40 years old, it is a special year indicating God's blessings. After a new decade, the following few years just seem like more numbers added on, at least to me. With 2026 marking 41 years post injury, it somewhat feels like just another year. Throughout these four decades, my family and I have had help from many people in various ways.

I can never repay all that I've been given, but I like to help wherever I can. Volunteering at CHAMP Camp for 16 years was great fun and a way to help and I also mentor others with spinal cord injuries through a few different organizations. A few weeks ago, I was asked if I could help preach this month.

My response was that I don't normally schedule anything before mid-March due to weather concerns. At the time, it was in the low 60's and very nice. However, Iowa weather changes quickly from one day to the next. Ten days ago, I was asked if I would preach today and that few others were available. The long-term forecast looked good, so my family and I thought it would be okay to bend my annual start date.

Now that the day has arrived, the weather changed to very cold with wind chills around 0 for the time to be at church. Instead of staying warm in bed as I normally would, I got out to brave the cold and preach the Word of God.

Paul wrote to the Philippians that he could do all things through Christ who strengthened him. This doesn't mean we can flap our arms and fly, but that we will be given what we need to serve God. As I stretch my comfort zone, I have been remembering and praying this verse.

It has been shown me through the decades of quad life that God will give what is needed, but in His timing. Different scenarios of getting stuck outside have gone through my head, but I know it's extremely unlikely on a day with just cold and no snow accumulation.

If nothing else, today serves as a reminder of why I have my schedule rules. Thankfully, I should be home all week and can warm up for the next few days. I look forward to warmer days of going to preach and have a new record start day that will not be repeated, at least in Iowa.

Warmish Meeting Week

After a month of staying inside, this was a week of getting out. Thankfully, temps were in the 40's and 50's with sun. Getting out at church last Sunday still felt very cold though. Tuesday's outing was a much needed haircut and Thursday had a meeting of local pastors and church speakers.

This month's meeting was a "field trip" to one of the funeral homes in town. I used to work with the director in updating their website and got to know him well. Seeing more of his work was interesting, but not sure what I expected. However, Friday was the largest meeting event.

In late 2019, I joined the Olmstead Consumer Task Force. At that time, meetings were mainly in person with an option to meet virtually. Of course that switched a few months later and meetings have been virtual ever since.

I lead one of the sub groups and, a few months ago, member suggested we make a video for the task force to use in promotions and recruitment. It sounded great to everyone and I presumed we could use Zoom as our video recording device. However, a friend of another member is studying film and has access to good cameras and lighting. In the space of a few minutes, we suddenly planned to have everyone gather at my local library due to central location and so I didn't need to travel far in winter.

Therefore, since December I got my library card and arranged renting the meeting room. Our small group planned to join everyone else virtually, which meant we would need access to the room earlier than normal. Thankfully, I was told that wouldn't be a problem and all was set.

Friday morning, my caregiver and I arrived at 9:33 for our planned 9:30 meeting. I saw several people standing around the entrance and soon recognized faces as my group. Knocking on the door and phone calls didn't allow us entrance, but we were finally let in about 15 minutes later. Some quick tech setup allowed our group to join the rest of the task force just one minute late. It was great seeing real faces around us while grazing on Dutch treats, crackers, and other items.

The full group meeting finished early and we were soon off to work on our video project. The film student found a quiet corner of the library to setup his camera and lighting equipment. After short discussions, about six people gave planned and impromptu talks. I originally opted to do my segment in one take, but ended up redoing it after listening to other members and thinking of more to include.

Overall, I think it went well. I look forward to seeing the finished product and hope it works well for years to come. As I laid in bed Friday night, it occurred to me that I didn't take any pictures of our gathering and not sure anyone else thought of it either. Hopefully this will prompt more in-person meetings in the future, but it is easier in the quad life to stay virtual. This week appears to be calm again, except for preparing for my first sermon of the year.

Talking full Circle

Several years ago, a family in my church needed help with child care. My parents and I love kids and volunteered to help watch 2.5 yer-old Ray and baby James. As the years passed, these two became my parents' adoptive grand kids and I was sort of the odd uncle.

Children have a tendency to grow too quickly and the two youngsters soon turned into teens with less frequent visits. Ray is now a college senior with plans to graduate this spring with her degree in nursing. For some reason, she likes working with neurological disorders, especially spinal cord injuries. Therefore, we have had discussions on hospitals specializing in SCI.

Ever since Ray started college, I have been emailing various professors that work in the nursing department. I thought this would be a great opportunity to speak with nursing students and help Ray and her classmates. Since the campus is five hours away, my offer was to visit virtually at no cost.

As is typical, I didn't get any responses. In three years of emailing, I only heard back from one professor who said she wasn't the right person to ask. I asked who would be, but didn't get a reply. I didn't try this year as I figured it wouldn't work anyway. However, there are multiple ways to visit with students.

Ray contacted me shortly after starting school this fall and wondered if I would be willing to speak to the nursing student club she helps lead. She knew of my attempts to try to speak with a class, so this would be a great compromise. Friday was the day I virtually visited with the students and staff who were available.

My computer is setup for me to use most easily from bed. However, I wanted to be in my chair to look a little more professional and maybe answer wheelchair inquires. My caregiver moved my bed so I could get aligned better with my computer's camera. I'm usually a little short as well, but my chair's elevating seat feature came in handy to improve my positioning.

Unfortunately, the crowd was much smaller than anticipated with only three students (one of who was Ray) and one late joining professor. Nevertheless, I squeezed my 60-minute presentation into 45 and covered the basics and special nuances of persons living the quad life. Whether by many or by few, I'm always glad when I get to teach upcoming generations. The girl that I helped play Chutes & Ladders has now become a young woman helping me to fulfill both our passions.

One item I covered in my presentation was funding issues. On Thursday, I received a response about the appeal I submitted to restore my day-time funding. The type of decision I received cannot be appealed and therefore will not be heard. One option still remains, but I will see where God leads. This week looks to be busy again and with fair weather, so it should be a good time to finally get out of the house.

Chair Repair

It has been over two months since I got my new chair. In that time, and after three miles of driving, I have noticed areas that need work. This week, two technicians came from my chair provider to address some of the issues.

First, my caregiver and I noticed my legs were not sitting straight and my feet wouldn't lay flat. As long as I can remember, my legs have flopped out to the sides, like frog's legs. It's fine in bed, but it doesn't work when trying to sit. Therefore, I have had knee supports that keeps my legs from going out too far.

After some fairly significant adjusting of the supports, my legs were straight once again. Next, moving my foot rests up about an inch allowed my entire foot to lay flat and be supported. My caregiver and I were very pleased to see the improvement and my lower body aligned properly.

Another concern that my parents noticed was this chair's lack of a strap for chest restraint. I liked not needed another device to stay straight. However, I researched through my local law enforcement and we both discovered a chest restaurant is required for wheelchair users in vehicles. The solution is now a strap that can go over my front when needed, but easily left off as well. Unfortunately, not everything else could be adjusted.

When traveling, my mom and I noticed the chair wants to tip over when making right-hand turns. I explained the situation to the techs, but they had never heard of such an issue before. Looking at my van's straps for the chair, they thought it could be due to where I sit and that I can't be restrained from the side. The only suggestion was to only tilt fully when highway driving, and sit upright when in town. A visit to someone who does wheelchair restraints could also offer solutions, but that was all.

As time has passed, I've also noticed I'm not sitting as well as at first. My right arm seems to be elevated and just not sitting right at a good angle. Again, the techs were at a loss for further arm rest movement. Dad tried moving it Saturday, but I have yet to sit in the chair and try his change.

I had hoped to have all concerns fixed at this point and enjoy my new wheels. Unfortunately, it still has some challenges and is starting to get uncomfortable to sit in. I was looking forward to my first time preaching this spring and be able to get elevated for the crowd. Now, I'm beginning to wonder if my previous chair may be better suited. So far, nothing is scheduled, so I have time to adjust and consider. Such is the quad life.

Tomorrow, I'm also waiting to hear if my funding for nurses can be approved for February. I filed an appeal, but it will take time to decide on when to be heard. Until then, I continue to rely on God's timing and grace for my needs.

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.

Time Quickly Disappeared

The eighth commandment is "Do not steal." Most of us think about robbing an individual, a business, or something similar. These are correct thoughts, and the value of what is taken doesn't matter, it still breaks the command. Therefore, a pen or penny is theft just the same as taking a diamond ring or millions of dollars. However, there is something even more precious that we have been given and regular waste.

Time is a gift from God, but one that vanishes quickly. I have preached a few times on the importance of not stealing time by using it to sin or waste it in too much entertainment. For about the past month, I have been acting as a hypocrite.

In part, the fourth command says that six days you shall labor and rest one. That has changed in the new covenant, but it is more than I will cover in today's update. We are allowed time to rest, and it is necessary, but we need to be careful not to overdue it. 

At most, I only have about five hours a day that I'm upright and can be active. Therefore, I try to be diligent to only play games or upright leisure activities Sunday afternoons. However, since probably mid-December, I haven't had a lot of web work and make excuses to spend an hour 2-3 nights a week in entertainment. This may not seem like a lot of time, but it is a significant part of my day compared to total upright time. Early Monday evening, we received a call that brought time management to high importance.

Last October, my DHS case manager submitted my annual review to have funding for my day-time caregivers. I use a waiver, or exception, to go beyond the regular allotted amount in order to get a full day covered. Monday's phone call let us know that it was denied. Starting February 1, I'll lose a large chunk of what covers my day help.

Therefore, this week was partially spent in research and filing an appeal to the decision. It costs nearly three times the amount to have me in a care facility vs. living at home. Beyond that, without private insurance, my doctors, medications, monthly supplies, and so on would also be charged to the state. I'm looking at the financial strain as well as quality of life. The Olmstead decision by the Supreme Court in 1999 said that all accommodations must be made to live in the least restrictive environment.

It's possible I will have to speak before a judge at some point and plead my case for more funds. My parents can't regularly do more than they already are, but my breathing system is also incompatible with alarm systems in care facilities.

Living the quad life indeed has its challenges. This week's lesson is to make careful use of time as we may quickly lose it. As with everything, I trust in God's care and will look to His plan. This has been a difficult year so far and it looks like the trend will continue. 

Reading List

As long as we live, we continue to learn. A few days ago, we learned about another lose wire on my chair that wasn't plugged in properly. Once it was, everything worked well again. Thankfully, nobody had to come and make an unnecessary repair.

Books and reading in general are another great source of entertainment and education. In early 2025, I decided to record what books I read for the year. It ended up being a longer list than I expected.

• 52 Churches -February 17
• Mishandled -February 26
• A Call to Prayer -March 3
• There is Blessing in the Battle -March 12
• Christ-Centered Biblical Counseling -June 30
• God Said and it Was So -July 30
• Christ Triumphs Over Sin and Death -August 13
• Truth About Heaven -August 20
• Dinosaurs, Dragons, and the Bible -October 20
• Traced -November 24

In addition to these ten books, I also read a few magazines, booklets, and I'm about halfway through a book on counseling by Dr. John MacArthur. This list is also just of physical books. I have slowly been reading an electronic version of Foxes Book of Martyrs. Reading about how Christians were tortured and killed by the Catholic church isn't a very pleasant topic. I also find I get more easily distracted with e-books. I may doze off, but when I have a physical book in-front of me, I can't wonder off to anything else.

My schedule also makes it so that I typically can only read for a maximum of about two hours twice a week. Even that often gets interrupted by other commitments or knowing all I will do is doze off and stay on one page for 30 minutes.

The most important reading I do though is every morning, night, and afternoon. As I have for over 25 years, I continue to read the Bible daily. In the morning, I read an annual plan that goes through the full Bible in a year. Before bed, I alternate between two study Bibles and progress as time and text allows. Finally, I also read and study two chapters in the New Testament every day for a month.

Ecclesiastes 12:12 says, "But in addition to this, my son, be warned: the making of many books is endless, and much devotion to books is wearying to the flesh." Solomon concludes with verse 13, "The end of the matter, all that has been heard: fear God and keep His commandments, because this is the end of the matter for all mankind." 

Books are not short in supply, but we need to be sure whatever we read, it honors God and His creation. I don't know what my list will be for this year, but I look forward to continuing to learn and study the world God has made.