Sunday, July 29, 2018

Amish Visit

Southeast Iowa has a growing number of Amish living around several small towns. Near Albia, IA, there is a small store run by Amish selling a variety of goods. On the last Friday of the month, they have a supper open to the public to help raise funds for their school.

When I had regular Friday evening help, this supper was a regular stop my parents made. Help has been very rare for evenings this year and they haven't been able to get out very often. However, this last Friday was an Amish supper night and the weather was perfect for being out. The three of us decided to take a trip south and enjoy the evening.

It was a small crowd of about a few Amish families and "English" primarily around my parents' age. Whenever I go out in public, I'm used to curious looks from kids, and adults, with my equipment. However, I highly doubt Amish children have ever seen a man using an electric wheelchair controlled by my chin. As soon as I started getting out of the van, I could see the curious faces.

Children are generally curious, and I don't mind helping them learn about different abilities if the opportunity arises. I noticed all the kids were quiet without the usual squabbles from other kids I'm used to. After getting grilled chicken and real mashed potatoes from the food line, we sat at the end of a table where I could watch a game of volleyball.

As mom helped shovel my supper in, Amish kids kept slowly walking past while checking me out. At one point, two girls just stopped and studied me about five feet away. Between bites, I said hi and smiled and they responded with bigger grins. There bare feet slowly shuffled away while still keeping an eye on the visitor with wheels.

After a tour through the store and purchase of bulk spices, it was time to load up in the van and head home. As I backed onto the lift and started my ascent to the door, about a dozen kids watched with fascination across the small parking lot. Dad joked that with my regular lack of footwear, I should fit in well with the crowd.

Living the quad life, I expect to be a person of interest when out in public. I can't say I see very many people like me regularly out and about, so people tend to be curious. Friday was a little more interest than usual, but it serves as a reminder to try to always be polite and set a good example, even if I don't succeed.

If the weather is good for the next Amish supper, I can see going again. Maybe next time I should learn Pennsylvania Dutch though and see if the kids will speak more.

Sunday, July 22, 2018

Be Prepared

Every week when I make my entry here, I normally have an idea what to expect for the week ahead. That was the case last week, but another one of those unexpected events blew in on Thursday.

The day started early with my day caregiver calling off due to illness. Dad was busy with deadlines at work, but he would be able to come home a few times during the day to help with my cares. Around 3:00, I was on Facebook and saw a notification that a local news station was doing live coverage of storms in the area. I was on flat time and not doing much anyway, so I started watching it.

A small, but strong, storm cell was just east of Des Moines and had produced tornado damage in Bondurant. The cell was growing in size, but it was heading directly east and would be at least a county north of us. It was only mom and I at home anyway, so I wouldn't be able to get up in my chair. The report continued showing damage to houses as well as storm tracking and other cells in Iowa.

Dad came home about 3:30 to do my afternoon cares and he agreed with my estimate that we would be well south of any trouble. Over the next 20 minutes, we watched as it started to drop south and get closer to us. Just about 3:50, the tornado sirens went off in town, but it still was tracking to our north. However, by 4:00 the storm shifted slightly south again with a very prominent hook echo on the radar. Winds started picking up outside and the newscasters were saying anyone in my area of town needed to seek shelter immediately.

At this point, dad and I agreed as well and he picked me up, brought me downstairs, and laid me on a mattress on the floor. As is typical in Iowa, he went back upstairs to check the weather while mom and grandma stayed downstairs with me. The lights flickered a few times, but that was it. Dad came down and said the clouds looked odd, but he never saw anything of a tornado and the sun was coming out.

With some grunting, dad got me off the floor and back upstairs to my bed where the news was still going. They said damage was reported at Vermeer Mfg., a nearby farm equipment manufacturer, and it sounded extensive. I got in my chair a short while later to run errands and we noticed leaves from corn stalks all over the yard.

Friday's nurse was sick as well, so dad stayed home with me and we went to survey damage in the area. A short drive to the north, we found extensive tracts of corn fields flattened by an apparent tornado. The area was about half a mile from our house and explained the origin of the leaves. One of the plants at Vermeer also suffered severe damage from what was determined to be an EF-3 tornado. The facility is around a mile from my house with parking lot lights clearly visible at night.

Thankfully, there were only 13 minor injuries reported with no fatalities. If the storm had shifted another mile or less south, it likely would have been a different outcome. This week has taught me again to be thankful for God's blessings. It also shows that we always need to be prepared for any situation and not wait until the last minute. This week will hopefully be calmer, but I'll continue to go along the path planned for me.

Sunday, July 15, 2018

Numbering Up

July hasn't been a busy month and it has allowed for a lot of down time and healing. However, I'm not just laying around watching the clock.

This month marks three years since I started using the FES bike. My latest report lists 150 sessions and 439 miles biked. I know a few sessions also didn't get recorded, so actual numbers are even higher. For someone that hasn't walked in over 33 years, I think it's pretty good.

Regular readings
One of the parameters the bike records is how much power my leg muscles are putting into the work. Usually, it just reads 0.0, but it will go up to 2.0 for short stents when my legs are stiff. This past Friday, the reading stayed consistently around 2.7-2.8 for over a minute. That means my own muscles were responding to the stimulation and doing work instead of just going along for the ride.

With getting back to biking, laying flat, and my regular high protein intake, my pressure sores are also responding. Different caregivers give various responses to how they look, but this week both my day assistants said they looked good. The one that worsened last month still has a long way to go, but I'm thankful for any progress. I pray they continue the next few weeks as break time will soon be over.

A couple weeks ago, a church asked me to preach for them on August 5. Unfortunately, the facility is not accessible, so I had to decline. A few days later, I was asked for the same day at another, accessible, church and was able to accept. My own church asked me to preach in August as well and that was decided to be the 12th.

This week, another church in northern Iowa asked me to preach on July 29. It sounds like I can get in without trouble and accepted the invitation. That means I'm scheduled to preach three weeks in a row at three different churches. I plan to preach the same message at two of them, but coordinating everything is getting tricky. I'm also scheduled to work at the Ark Encounter booth twice in August during the Iowa State Fair and to speak to nursing students at the end of the month.

I am thankful to have these opportunities and the break before they begin. Hopefully healing will continue even with a busy quad life. I'll see if anyone else calls this week!

Sunday, July 8, 2018

Odd Quad Thoughts

This has been a busy week of laying around a lot. When I get extended amounts of time I don't do much, my mind tends to wonder.

Every day I have a nurse, I do skin checks usually twice a day. It's a simple process of holding a mirror so I can check from head to foot for any red areas, scratches, scrapes, etc. Most of the time, everything is normal, but other times I find clothing may have been too tight or something was poking me in my chair. As I glance everything over, I wonder what it's like to have a body that feels and moves to my command.

I can often see my legs laying in front of me and I wonder what it's like to walk. Walking is something millions of people do on a regular basis without any thought, but I don't remember it. Using my FES bike, I partially experience regular leg movement, but it's only for a short period.

For most of the year, I go barefoot. I am part of an advocacy group promoting the benefits of shedding footwear and a common discussion is feeling different surfaces. The descriptions somewhat make sense, but they are still only something I can guess at as I see my feet lay on my bed or wheelchair foot pedals.

The same thoughts occur with my arms and hands. What's it like to pick up something, get your hands dirty with work, and other common tasks? I likely will never experience any of these things in my life. However, just because I don't feel anything, that doesn't mean my body is incapable of experiencing touch.

All the nerve endings exist in my skin just like everyone else. When they are stimulated though, the signal doesn't go all through my spinal cord for me to register it. I was up in my chair a few times this week and I kept getting much stiffer than usual and more muscle spasms. I did get on my bike to help, but my legs shook and jerked so much that it was difficult to start.

My guess is that the larger pressure sore from camp is starting to heal and is painful when I sit. The best solution is staying off the area and allow it to heal. Unfortunately, that will likely take several months, so it becomes a tricky balancing act of being good for body maintenance and keeping active. This is the first entry I've typed while flat in a long time, but likely not the last.

I'm thankful for the abilities God has given me and continue to be amazed at His creative work in the human body. This week ahead will likely be similar to the last few, but I will see what God has planned.

Sunday, July 1, 2018


It has been over a week since I got back from Indiana and I am still recovering. I've been saying for a few years I'm getting to be an old quad and I'm wondering if it's actually true.

During counselor orientation, the camp founders usually talk a little about why they started CHAMP Camp and the first few years. In 1991, the pilot weekend started with just a few kids that were residents of a children's hospital in Indianapolis. Technology had allowed them to survive spinal cord injuries and other diagnoses and camp's purpose was to enable kids to enjoy life more.

Originally, an age limit or graduation age was not set as it was unheard of for kids with such complex medical needs to live past teen years. I've heard similar statistics before through the years and have seen God carry me beyond every statistic given.

Dave, a camp founder, used me as an example this year to demonstrate how greatly things have changed and how camp has gone further than they ever dreamed. One of the original campers also visits and we relive old camp memories. Both of us have seen the passing of many of our former bunk mates as well. While I have been given many opportunities, I am feeling changes come with the years.

At camp 2017, I was dealing with three pressure sores. Thankfully, they changed very little during the active week and it didn't seem to have a major impact. The same three remain this year, but one of them got nearly four times deeper after the week. As a result, I'm only staying upright 45-60 minutes three times a day. The hot temps and cold air conditioning also has resulted in a lot more suctioning (clearing out my lungs) since camp and just generally being tired.

I am very thankful I was able to do another year and get to work with the campers and some counselors I've known for most my life. I also got to deliver the message at Sunday morning's optional church service for counselors.

If God allows me to get to another year, I don't know about attending CHAMP Camp 2019. It would be great to get to 15 years as a counselor, but I'll see what God has planned. I could give thanks this week for my daytime funding being approved for another year. I'll see what happens in that year and follow God's plan.