Progress or Forced Payment

It has been an interesting week in the quad life, one of progress, rest, and forced searching. What more could you ask for in a seven-day time period?

I have still been struggling with the electronics on my chair. After 29 years of having two chairs that worked basically the same, I have not settled on the new system after nearly a year. Therefore, Tuesday was taken by a trip to Des Moines to see my chair technicians. They added grease to a sticking sensor, then slightly changed how my control buttons work. It is a little better, but still not exactly what I had in mind.

On Wednesday, my parents managed to leave for a three day trip. I have an aunt that just started helping on a few evenings and another occasional evening assistant I've had for a few years. The second person is scheduled for surgery in a few days and won't be available for several weeks. That meant any trips needed to be done soon. I enjoyed having the house to "myself" and seeing my parents get a break. Of course, like most outings, I looked forward to hearing about train sightings. They found a great overlook that showed a town, and a passing train. For me, Thursday evening was the most problematic.

Last week's post was how my sermon prep went from excitement to dread. However, I did finish my PowerPoint, cues, and notes early in the week. After supper Thursday, I opened my notes to review and see if I needed any changes before printing. When the Word document opened, I also had a message come up with a big "Okay" button. I was laying flat and couldn't read the message, but clicked okay as it was my only choice.

Something didn't look right, so I investigated further when I sat up. Apparently, my 2021 version of Microsoft Office now had an outdated license and would no longer work. All I could do was open existing documents and print them. I was thankful I had finished my notes, but couldn't make any adjustments. I made sure to print what I had, but now had a problem.

I use Microsoft Word and Excel almost daily for work items, tracking caregiver hours, and more. Many software companies have now stopped selling their product for one-time purchase that can be used for many years. Instead, they do prescription services for monthly or annual plans. It might be cheaper initially, but you end up paying several times more than you would just upgrading every few years. It's great for corporations to have a balanced software budget that doesn't have spikes every 3-4 years for upgrades. For individuals, it adds up quickly.

Friday was spent looking for options while my emails for site work kept coming. I finally found a version that still had just a one-time purchase (hopefully). I'm not sure how long it will be until this version is deemed outdated and force to pay for subscription services. Sometimes, technology progress isn't always for the better. This week, I hope to finish October with no unexpected findings.

Excitement to Dread

For the next two weeks, I'm scheduled to preach at two different churches. When I agreed to help these congregations, my thinking went to the calendar. These will be the Sundays before and after Reformation Day (or Halloween), and my message could be something related to it. I had some initial thoughts in my head, but would get them more developed as time came closer.

Around mid-September, I laid awake in the middle of the night unable to turn my head off. As I considered the upcoming message, I soon had a flood of Bible verses, points to cover, transitions between topics, supporting verses, and more. While the sermon rapidly progressed in my head, I became more excited about it and looking forward to writing and presenting it.

Of course, I'm enveloped by pillows and sheets and nowhere near my computer or able to write. I had my night nurse write down a couple Bible verses on a note so I could maybe remember them in the morning. The next day, I wrote an initial outline based on what I recalled and felt some of the same enthusiasm.

This isn't the first time this scenario has happened. I have had ideas for preaching or writing come to me at night with great grammar and talking points, and then I struggle to remember them when I can write. Some people may claim some sort of divine inspiration, but I am not one to fully agree. However, I do pray for any preaching I do to be according to God's will and not my own.

As the weeks have passed, I have had trouble keeping the enthusiasm I had in the night. When opportunities to write became available, so did every excuse against it. Thinking I was too tired and needed to do something to wake up first, not enough upright time remaining, not in the right mood, and so on. Instead of being thrilled to prepare and present the message, it became more of an arduous task that I saw with dread.

With less than a week to go before preaching, I now feel behind on preparation. I finished writing my initial manuscript a few days ago, but don't like the concluding few paragraphs. The PowerPoint has been started, but should have been finished by now. What should have been done with plenty of time to spare now will be going to the limit of time.

In the nine years I have been preaching, this is a trend I've noticed. When you're doing a good work for Christ, it is when Satan temps you more. The temptation may be subtle, such as other work projects, or they could be strong in something breaking God's commands.

Knowing and anticipating this whenever I do something helps to ward it off. However, with this current round of preparation, it's an area of the quad life I need to pray and work harder on. With that said, it's time to get back to work.

Going out as Lunch

This week was a nice change in Iowa. We went from cold, wet days, to full sun and warmer temps. It helps improves moods and allows farmers to get in the fields and start harvesting.

On Monday, my regular day nurse was on vacation and my parents and I debated on multiple options of what to do. We ended up having lunch near the river before visiting my grandmother at her care facility. With little convincing needed, the four of us were soon taking a trip on the sidewalk around the facility. It was nice enjoying the sun and taking a leisurely stroll while pausing at different points of interest.

When harvest begins in Iowa, bugs that have dwelt in the fields suddenly lose their homes and come searching for other sources of food. It wasn't long until some in our group were being bitten by little black bugs. I am usually the one that gets attacked by pests, but I didn't notice any around my face or see anything on me. I don't like anyone being in discomfort, but thankful I wasn't being bugged.

Not much later, I noticed my left leg was somewhat jumping and my foot nearly bounced out of place. The same happened with my arm, and I wondered what was going on with my limbs. After our stroll, we returned grandma to her room and departed for home. On the way to the van, I noticed both my hands had red spots on them and presumed they were bug bites.

As dad started my afternoon medical cares, I took glances at my legs and exposed skin as I could. I soon noticed a large red area near my knee that looked like it had at least three bites in small concentration.

These findings explained the unusual jumping from my leg and arm. Even though I wasn't feeling the bugs, they were still feasting on me and not getting brushed off. Later in the week, I noticed further bites as my night nurse reported squashing a spider near my room.

Sometimes, it can be handy not to be able to feel most of my body. I don't have trouble with aching joints or anything itching well beyond my reach. However, it's generally a better situation to know if I'm being used as a cafeteria and need help to swat pests.

I briefly went outside again on Friday, but was thankful for a strong breeze to blow away pest problems. It's the time of year when I want to absorb as much sun as possible before cold months arrive, but I also need to watch for other critters enjoying the weather. 

Thankfully, the next few weeks look to be calm in the quad life. I have a few projects in mind that need attention, but I'll see what wins for priorities. 

Reluctant Change

The calendar has turned again and we are now starting October. With the year progressing, so are the seasons. However, some are more ready for change than others.

In-front of my house, a large maple tree shows off bright red leaves every fall. This year, about half the tree started turning color in June and has been slowly progressing all summer. I wondered if it was a sign of problems, but other maple trees in the area have been doing the same thing.

Earlier this week, during a rare sighting of the sun, I looked out the window and noticed bright red leaves next to fully green on the same tree. It made me initially think of the colors of Christmas, but also a reflection of how many people feel.

Part of me likes to see change and move forward in time, technology, and other areas. A larger part wants to stay with the warmth of summer and not see it end. I am also happy to stay in my ways and not branch out to try new things.

A conservative YouTube news reporter I watch has been advertising a supplement to help gut health for several months. I started seeing it in more places and researched it further on my own. After a few weeks of debate, and asking my doctor, I went ahead and ordered it. I don't have the magical changes advertised, nor did I expect to, but it may be helping a little. It's hard to evaluate after one week, but it's a start.

I also read an article this week that interviewed a quadriplegic, with a lower injury level than me. He gave his experience of having multiple problems, but then connected with other people with experience in different areas. They helped improve the issues he was having and has now had 12 years without pressure sores or infections. I'm thankful he found help, and recommended joining support groups to get and give advice to help the SCI community overall.

This is something I would love to move forward with, but know the support is lacking in Iowa. My local community tried having a wheelchair user group, but it only lasted a few months before dwindling out. I am part of another group of Iowans with spinal cord injuries, but we meet very infrequently and most the group has lower injury levels and therefore different needs and solutions. 

No matter the issue, season or reluctance, I can always give all concerns to God. He is the same yesterday, today, and forever and will never forsake you. He knows our needs before being asked and always fills them in the best way God has planned.

Living the quad life may be very stagnant, but some things do move on. Like our tree, I'll continue to see what stays the same and what progesses ahead.

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.