It Takes a Community

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

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

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

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

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

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

Visually Impaired Wheelchair Driving

This week was my annual eye exam. The optometrist I have been seeing for over 30 years retired, so this visit was with a new doctor that included new tests.

Getting checked in, I was asked to sign a paper so they could take pictures of the back of my eyes. It didn't sound unusual, so I put my pen in my mouth and signed away. As I waited to get called back, I heard the same document given to other patients. Therefore, I figured it was picture day at the eye doctor's.

When I was called back, I had the usual tests with a puff of air blown in my face and reading letters of various sizes. Testing lenses was a challenge as the new doc had trouble getting the contraption low enough to reach me. At previous appointments, I never paid attention how the equipment got low enough. However, some neck stretching got the test done. Everything looked good, but he wanted to do some eye drops for one last test. I figured it was the picture I signed for, so let him do the test.

At the end, he said my eyes would be sensitive to light for a while, but wouldn't affect my vision. I wasn't told my eyes had been dilated, but figured it out from what I heard from my parent's exams. Leaving the building, I wore flimsy sun glasses they provided. My caregiver and I parked a short distance from the office as we had planned to run some errands after the appointment.

Along with everything being bright, the world seemed fuzzy, even with my glasses. It was time for lunch, so we stopped at a restaurant I've never visited before. I could read the large category headlines and bold text, but that was it. I guessed at an omelet and had to verify what I thought it said was in it.

After lunch, we went to a nearby meat market to get some hamburger. The aisles would normally have been a small challenge, but they were tight with the world being a blur. I nearly ran over another customer twice as I tried to navigate corners. I was thankful when we got back in the van and I no longer had to drive myself.

It took about three hours for my eyes to return to normal, just in time for a rare evening outing. Mom said she has been told you can't drive after getting your eyes dilated. From my experience, I understand why. Living the quad life results in unique situations, but I will be more prepared for future eye exams. 

Heading Toward Calm

The last few months have felt like I'm always on the go. This is typical for my summers, but for this year has felt extra busy for some reason. Thankfully, my calendar is clearing out and it looks like slower times ahead for a few weeks. However, this last week was still full of activity.

Tuesday was my second and final day at the gospel outreach group. The booth is sandwiched by two other booths that do not have Christian values, the Democrat party and Bud & Mary's cannabis booth. I usually end up facing the cannabis booth and get a nose full of the free smells they include of their products. It's supposed to just be the scent, but the idea can give thoughts of added influence. For the first part of Tuesday, I started the shift facing the opposite direction.

One lady spent time talking with the political party, showing support for their ideas, and then meandered over toward me. As she looked over the literature we have on display, I asked her about her knowledge of Noah's Ark and the Bible. She had some, but looked more disdained, and said she was part of a liberal Lutheran church. Just as I began asking about sin and salvation, she quickly left. Throughout the rest of the morning, I had a few short conversations with parents as their kids got dinosaur tattoos, but my fellow volunteers looked busier. No matter what, God's creation and the gospel were shared to many people through various forms.

Thursday and Friday night were this week's open shifts. I was thankful not to have any outings as the day starts out pretty groggy. I made sure to review the message I preached this morning, but not much else was done for being productive.

With this schedule of open nights likely continuing for several months, we all need to get used to the routine. Unfortunately, I already see the toll it's taking on my parents' health. God has brought us through another week of the quad life and I will look to Him for strength and energy.

Open Nights and Hot Day

I've wondered what a "normal" life and week would be. Get out of bed under your own power, no need for caregivers, go to work, come home, etc. However, that is not the quad life or what God has given me. This week was a mixed bag of various items.

Tuesday and Wednesday night did not have help. Two various nights a week without help will now be the normal for the foreseeable future. This week meant a very tired start to Thursday and a dentist appointment.

A few weeks ago, it was discovered that I needed a new filling in one tooth. This in itself wasn't a big deal, but my dentist is located in a former house and has limited space I can access. After getting setup in my normal space and letting novacaine take affect, it was discovered some of the equipment wasn't working. Therefore, with a half numb chin, I had to drive to a different room and get setup again. Thankfully, everything went as expected in the second location.

About three hours later, with a partially numb mouth, I had my annual certification to determine if I still need the same nursing care. My care needs have adjusted little in 40 years, but they still need to be checked annually. After assuring I can hear well, but still need complete help for pretty much everything, the assessment was finished. Just like last year, I don't contribute to household cleaning either. Now we wait to see if Iowa thinks I can stay home, which is cheaper for the state, or to lose a good chunk of funding and go to a facility, which ends up costing the state more.

Finally, Friday morning, I got up early and headed out to my first visit of the 2025 Iowa State Fair. My time at the gospel outreach booth went well, but I only had short conversations with visitors and handed out a few gospel tracts. When my caregiver and I left the air-conditioned building, we were abruptly reminded that the afternoon was in a heat warning.

Lunch started off with sharing a new fair food, a scotcheroo shake. The cold tasted good and we quickly emptied the container before remembering to take a picture. Unfortunately, after eating chicken strips, my stomach discomfort I had in the morning returned. We spent about 30 minutes minimally roaming around, but I was ready to get home.

Despite dad's best efforts, the van does not cool off on hot days. By the time I was home, my temp was nearly 102.5° and I was glad to be home. Thankfully, cooling off isn't too hard for me. After 90 minutes without clothes, getting washed down, and having my cooling fan on me, I was back down to a reasonable 98.8°.

My next scheduled day at the fair has possible thunderstorms, but should be much cooler. After preaching tonight, and next week, my calendar is starting to have open days again. I'm thankful for all that God allows me to do and His care through so many people. I don't know what the future may bring, but I'm hoping for a calmer week ahead. 

New Speaking Experience

In 2004, I spoke to my first class of 2nd graders about disability awareness. I'm not sure if that qualifies as public speaking, but it was where my side venture of talks began. Since then, I have spoken in several grade schools, colleges, and churches. However, this week was a new experience that I wasn't sure what to expect.

Sometime in May, I received a legitimate message through my website asking me to speak. The venue would be a ladies' group that gathered once a month at a church in a nearby town. I wasn't told a topic other than myself and to bring copies of my book to sell. We arranged to meet at the end of June, the week after vacation. However, that was when I wasn't feeling well and needed frequent suctioning. I felt bad doing it, but officially cancelled the day before I was scheduled.

The new time to meet with this group was Thursday, July 31. I do not like talking about myself, at least as a main topic for speaking. I know this blog is all about me, but this is a different setting. Proverbs 27:2 says to let someone else praise you and not your own lips. Instead of just telling my story, I tied in Jeremiah 29:11 and that God uses all of our lives in various ways.

In all, it was about 20 ladies who were well beyond retirement age. Apparently the time in June had been promoted more and had nearly 30 attendees. Without really knowing what to say, or for how long, it went pretty well. I likely should have spoke a little longer, but I'm not sure my voice would have been able to continue.

Public speaking is a top fear for most people, but it's something I find fun. Living the quad life is full of unique opportunities and I enjoy helping others learn and see more of God's care in our life. A similar venue may be interesting, but I will see what God brings.