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.