Productive Week Despite Sleep

Sometimes, it seems like everything happens at once. This was one of the weeks.

First off, Tuesday morning was the dentist. After a month of being careful with my temporary crown, I finally received my permanent cap. The new hardware is much smoother than my regular teeth, so I keep rubbing it with my tongue to feel the change. Switching crowns went quite easy and I'm thankful to have the process complete.

Thursday was a checkup with my ENT. My button is doing well, but he still prescribed treatment to be cautious. I hoped he could offer help with my nose getting plugged at night and making sleep difficult. Unfortunately, I'm already doing everything I should and he didn't have any further advice.

Friday morning concluded the week with speaking at a school chapel. It was my earliest talk in the school year for several years, but it was my last for the calendar year. I enjoyed helping students learn more in God's Word. Speaking to K-8 is a challenge to keep everyone interested and understanding, but I think it worked. My microphone decided to drop at one point though, so I concluded it was time to wrap up if the mic was getting drowsy.

All week, I was also dealing with sleep problems. Back on September 18, I had my annual physical with everything looking good. I can't remember when I started, but I have been taking sleep meds for several years. However, I have had trouble waking up in the mornings and asked about decreasing my sleep medication. My doctor agreed and I started the new routine that night. Instead of waking up more easily, it got worse.

Last week Sunday, I was so sound asleep that dad couldn't get me up in time for church. Tuesday morning, I slept through my caregiver washing my hair. When I sleep through someone pouring water on my head, the part I can fully feel, that is sound asleep. Of course the decrease hasn't helped sleeping at night either.

Finally, the week ended with two nights without help. This coming week, I also have two day shifts without a caregiver. Late nights and early mornings also don't help with being well rested.

Thankfully, I'm able to stay active in various ways. Living the quad life has different areas to guess and adjust. I'll likely keep the new med routine for another week before deciding to switch back again. I prefer taking fewer medications, but I also want them to serve their purpose. I will wait to see what happens and dream of restful nights, if I can sleep.

Forgetful or Hurried?

I have been reading Scripture almost nightly since high school. For more than a quarter-century, I have had the same routine and repeat the ritual every night. This week, a slight fear I have had finally came true, and it's a lesson as well as a caution.

When reading a physical book, most people use a marker of some sort to act a reminder of where to start next. I'm the same in this regard and wrote about one of my well used markers a few years ago. My nightly ritual is that I sit up in bed after a snack and my night nurse arriving. They put my book board in front of me, place the Bible on it (which version depends on what day), and open it to the marker. After that, I'm on my own.

The first thing I do is remove the marker and put it somewhere I can reach it. One Bible has my old scrap paper mentioned above and the other uses a cloth marker included in the book. Yes, my caregiver could move it, but it's a slight part of independence that I do it on my own.

For the next half-hour, I battle between reading and every distracting thought that can come in my head. When I complete a chapter, and it's close to 11:00, I put the marker in its new location, close the Bible and cover, and do a tap a tune for my caregiver to come help. It all works well, except I forgot one step earlier this week.

Wednesday night, my caregiver went to open the Bible, but the cloth marker was still laying on top the pages where I had put it. After decades of dutiful reading and repeating the routine, I had forgotten to replace the marker. He asked me where I had been and my mind went to a blur. With four different reading regimes, I had to think which Bible I was in and what I read two nights earlier. I had him turn to the book of Philippians, but quickly realized the text was extremely familiar and had just been read. Therefore, I flipped forward to the next book of Colossians. The text was not immediately fresh, so I started reading.

When I finished, I made sure to place the marker before closing the Bible. However, I kept second-guessing myself if I had read all four chapters of Philippians or just a few and I needed to finish yet.

Thinking about it later, I told myself a few things. First, if I can remember what I read 2-3 nights ago, I'm not paying enough attention. Yes, it's late at night and the end of the day, but this is the Word of the Lord recorded so that I can study and learn from it. Some Christians long to see even one Bible, and I'm reading multiple different passages in different forms and forget what a privilege I'm experiencing. Second, pay attention and place my marker when finished, every time.

I could say I'm living an older quad life and can excuse forgetting something late on a busy day. However, that doesn't get rid of my responsibility. The rest of the week went without trouble, but it was a good reminder to not hurry due to the clock and stay with the full routine.

Olmstead Taskforce Retirement

In 1999, the US Supreme Court decided on a case called Olmstead vs. L.C. It was determined that persons with intellectual and physical disabilities need to be housed in the least restrictive setting possible. Shortly after this decision, Iowa governor Tom Vilsack followed other states and established the Olmstead Consumer Taskforce (OCTF) to monitor Iowa's compliance.

As a high school student at the time, I was unaware of any of this and had other priorities in mind. It wasn't until 2018, when a friend said the OCTF was looking for members, that I learned of its existence. The group sounded somewhat interesting, so I submitted my résumé and application. A few weeks later, I was told thank you, but I wasn't chosen and my application would be kept on file. The following summer, OCTF contacted me if I was still interested. I debated, but went ahead and applied again and I was then taken on.

My first meeting was in September 2019 at a library near Des Moines. Another member had only served two of their three-year term and I was finishing that person's time. I arrived a little late due to a doctor's appointment, but had told the secretary the situation. My caregiver and I quietly found a spot to sit and listened to the proceedings. For the entire 3+ hours, including lunch, I was never welcomed, acknowledged, or thanked for coming. As I suspected, I was just there to fill a quota and nothing more. I looked forward to completing my one year and leaving.

Not long after 2020 started, meetings changed from primarily in person to completely virtual. This worked much better for me, and several others, and the format was continued. I also joined a subcommittee as required and finally started to feel like a valued part of the group. Therefore, I decided to try one full term just to maybe help more.

Friday was my final official day with the OCTF. After serving two full terms, plus an extra year, I was required by the group's bylaws to take a year off before applying again. For the past two years, I served as the vice-chair as well as chairman for the community access committee and on the executive committee. Due to various factors, I was slated to stay on an additional year as the OCTF chairman, but that changed due to another volunteer taking the roll.

During my tenure, I was pleased to see the group go from just dry meetings covering data to actively campaigning for change and meeting with people that could make change. In 2023, a few other subcommittee members and I met with the CEO of the Iowa State Fair to campaign for better accessibility. It resulted in increased accessible parking and further possible changes.

I am also thankful to report that my caregiver funding was approved for more hours for September-December. It was not a direct result from OCTF, but it is something we highly encouraged through various avenues.

Through all the meetings, at least two per month, I became friends with some other members. I can still attend as a member of the public, but without voting rights or similar privileges. I'm uncertain if I'll apply again next year, but I'm thankful for the time I was able to help and encourage more active roles.

That Sinking Feeling

I've heard stories about people dreaming they're falling into a bottomless pit and then wake up and fall out of bed. This week didn't have any strange dreams, but did have a sinking feeling in the middle of the night.

Central Iowa started September with a heat wave. All week was under a heat advisory with highs in low to mid 90's and night-time lows staying in the 70's. About 1:20 Wednesday morning, I was actually fully asleep for once. At that time, the electricity went off and instantly stopped everything using electricity.

My night nurse noticed as the lamp beside him turned off and my room went silent from various devices that are always running. Something also alerted my parents sleeping on the other end of the house. I was blissfully unaware of any change until my dad and caregiver were chatting a few feet away from me and woke me up.

Using my diaphragm pacemaker, I can breathe fine without needing electricity. However, the air mattress I sleep on does require power to stay inflated. As the two men talked and I figured out what was going on, dad would poke my bed to check on its status. With one eye buried in a pillow, I peered through my other eye to watch the action.

Dad or my caregiver had the emergency light sitting on my dresser and I noticed the side of the mattress was slowly getting higher in relation to my viewpoint. As the bed slowly consumed me, I heard dad say they would wait 5-10 minutes to see if the power turned back on and then see what to do. I had yet to say anything or acknowledge I was awake, but started counting. I receive 15 breathes per minute, or 75 breathes in five minutes. Starting at 75, I counted down and waited to get to zero.

Thankfully, with underground power lines, the electricity in my house has been very stable for at least 20-25 years. We had theorized plans on what to do if the power went out, but never tested them. Soon enough, my breath count reached zero and I chimed in on the ongoing conversation that we should work on getting my mattress hooked up to power. It was continuing to ingest me at a slow rate, but I definitely was going down. 

Dad and caregiver set off on our theory of connecting an electrical inverter to my van and then plugging in my mattress via an extension cord. Apparently the first attempt of using the cigarette lighter didn't work, but the two then connected the device directly to the battery. After figuring out cord configuration, my bed soon hummed back to life and slowly returned me from the depths to which I had fallen. One device was now functioning, but that was all.

Without air conditioning, my room stayed around 77°-78° in the warm night. Staying without a sheet, or anything else, on me allowed my temp not to clime too high. Thankfully, power returned around 5:00 and the van battery lasted long enough to keep me aired up. I never heard what caused the outage, but was thankful the plan worked. I also reviewed in my head how to tell my caregivers to setup the power source if my parents aren't around.

The quad life indeed has unexpected times and events. It is a reminder to be prepared, but also trust in God at all times. 

Tooth Question Week

At my last dentist appointment, it was noticed one of my upper side teeth had developed a second crack. The suggested solution was to put a cap on it to protect from further damage. Therefore, I went back to the mouth doctor this week for the first of two appointments last Tuesday.

This time, my existing tooth was ground down to some determined point and a temporary cap put in place. Thanks to modern medicine, the procedure itself had little discomfort and only took about an hour. The primary dental hygienist helping me looked to be a recent graduate of dental school and my dentist and another hygienist made sure to fill her on my history and why I am a quadriplegic. Other than occasional confirmation grunts while my mouth was occupied, I was impressed on the accuracy of conveying my history.

When everything was complete, I was warned to be careful not to pop the temp cap off. All week was a struggle to get much accomplished with trying to be gentle on my tooth. I slowly increased the use of it, but ended up saying "click" to my computer many times while trying to reduce mouse use.

Wednesday afternoon, while still having a tender mouth, I had my annual Medicaid review to make sure I'm still a quadriplegic and need help. As the interviewer sits directly in front of me, she asks questions about how much I participate in meal preparation or household chores. For meals, my only participation includes deciding what to eat (when on my own) and chewing. Apparently making a decision counts for something on the evaluation score, but still need complete help. The same goes with shopping, all I can do is decide. Someone else must get me in my chair, put me in the vehicle, drive, place items in the cart, and physically pay with my choice of currency (cash or what card).

After multiple questions along these lines, determining I need help with basically everything other than blinking and talking (assuming my pacemaker is connected and working), it leaves a feeling of slight depression. This is when the barrage of mental health questions begin. This year seemed to weigh heavily on the section.

I was asked the normal questions of my general mood and outlook on life. After this, the interviewer inquired if I have the habit of disrobing in public and making obscene remarks. Considering I can't even dress, or undress, myself in my own bed at home, I answered no. The full Q&A time took about an hour of questioning almost everything. However, I was never asked if I can breathe on my own and need assistance in this small part of life. The interviewer said they weren't supposed to submit extra notes, but would be sure to include it.

Thankfully, after more reconsiderations, my caregiver funding for the remainder of 2026 has been increased. When this week's evaluation is considered, it may result in more appeals and information gathering for 2027. Such is the quad life, but I'm thankful to be able to live at home and be active in the public, while keeping my clothes on.

Fair Days in 2026

My last summer activity most years is attending the Iowa State Fair and volunteering at the gospel outreach booth. I was at the booth on the mornings of Friday, August 14, and the following Tuesday. This year, I actually got into a few conversations with people.

The Saturday before the fair started, the booth organizer asked for help getting everything setup. Dad and I joined other volunteers of various ages and helped erect the steel structure, electric lines, banners, and everything else. I talked with a friend I hadn't seen in person for a few years and another one of the regular outreach volunteers. I knew her face well as we've served together in different functions, but it took a while to remember Mary's name. It was a great time of fellowship with like-minded Christians. Shortly after lunch, everything was complete, gospel tracts and booklets were on display, and the booth was ready for guests.

Friday morning took over 40 minutes to get in the parking lot, which meant Sara and I arrived a little late to our locations. Soon after, three older teen boys caught a glimpse of a million dollar bill gospel tract and picked one up. As they did, I directed to read the million dollar question on the back. Most people walk away as they read, but this group stayed. I waited a few seconds for the young man to read and then asked him, "Would you say you're a good person?" He responded, "I would say so, but they might not."

Using this, I bounced the question to his friends before taking them through a few of the Ten Commandments. They had all broken at least some of the commands, so I continued with all deserving of hell and Jesus paying our fine. It has been a while since I actually got to take someone through the "good person" test one-on-one, but they seemed to understand and take it seriously.

Later in the day, a lady from a neighboring booth stopped over and I noted her cross necklace. She quickly got to the question she had in mind; do I believe the world is flat or a globe? I answered globe and cited the Bible speaks about the circle of the earth. Before I could get to other scientific proofs, she cut me off and responded with her stance on flat earth and we'll just have to find out when we die. I attempted a reply, but she ran off before I received a breath. I have studied the beliefs of flat earthers and how they deny evidence we can test and accounts from Christian astronauts, but this was my first time speaking with one. Tuesday's notable conversation was with an older woman who believed dinosaurs were primarily made up. I gave her passages from Job and volunteer Mary gave her a booklet on the subject.

Regular conversations about the Ark Encounter were had both days with some people wanting to go and others already had. It was a great time though and I'm thankful I was able to volunteer again. Sara and I both commented on Thursday that it's a lot of work, and we don't really see much of the fair, but we already miss not having more outreach opportunities.

This week will be another busy time of doctor's appointments and annual tests. On Tuesday, I'm scheduled to get a temporary crown on one of my upper back teeth. I'm a little concerned how it will affect my stick use, but I will wait and see. It will be another fun time of adjusting in the quad life. 

Made to Deceive

Throughout history, people have tried to deceive each other in various forms. In the Bible, we read that measurements and weights were slightly adjusted to favor the person selling. They could give out less product, but still charge for the full amount.

As the centuries and technology have progressed, so have the ways thieves try to steal and deceive. Phone calls from legitimate sounding companies say you owe them money, but careful observance notices discrepancies. Is they are missed, the victim may be out hundreds or thousands of dollars. This week, I was not the victim of money theft, but misrepresentation of a different kind.

Every week, I get emails from Google reporting on my websites of any errors in their search capabilities. Most of the issues result themselves, so I often ignore the messages. However, one email was different than the rest and concerned my own work site. The message said that might merchant pages were set up incorrectly and needed to be resolved. This would normally sound helpful, but I don't sell anything on my site or have merchant pages. Clicking one of the links on what was supposedly my page brought me to a Chinese website that meant to be selling some products. Investigating further, my actual website was nothing but blank white pages. Even with proper security software, strong passwords, and updated plugins, I had been hacked.

I was also unable to login and access my site to make any edits. For the next hour and a half, I spoke with a customer service person from my site's web host to get the site restored. He did most of my site, but I was still unable to login. My time to sit had long ago expired, so I reluctantly had to quit and solve the issue later.

Tuesday through Friday were very busy days filled with meetings, biking, and my first trip to the fair. However, I managed to squeeze in another phone call and regain access to the site. Even with this accomplishment, major parts were still missing or not working. I also had to clear out 13 people who had added themselves as administrators. In an attempt to recover everything, I reverted to a backup from a few months ago. This resulted in my new login information being removed and I found out how to get myself logged in through a "unique" method.

Unfortunately, the backup ended up returning to blank pages and parts not wanting to function. With very limited upright time, it is difficult to make progress on something I have thankfully not had to deal with before. Monday will be another phone call and hoping everything returns to normal.

As Scripture, the heart is desperately wicked and prone to evil. My caregiver wondered why I wasn't mad on the phone and having heated exchanges. I explained such behavior does nothing and the person I'm talking to is trying to help. However, I do pray that whoever does these types of activities comes to Jesus for forgiveness and repents from such actions. I will see what surprises come up this week.