Crooked Quad

Scoliosis is a common problem when children, and adults, have spinal cord injuries. I followed the trend and as a result had rods put in my back in early high school to help straighten me up. It helped a lot, but I will always have somewhat of a curve to my spine.

When I had my rods placed, the back rest in my chair was custom molded to hold me straight. It worked very well, but it didn't fit on my new system.Before getting the update, my old back was scanned and was supposed to be copied over, but that didn't exactly happen.

My parents and I noticed quickly that my shoulders didn't sit as straight, but I didn't think much of it and wasn't too concerned. Unfortunately, that has quickly been changing the past few months.

2012 vs 2016

As part of my back's curve, I can't turn my head to my right very far. I noticed early this year that my range of motion has been getting worse and we're quite certain it is due to my chair. I was fitted for a new back in late May, but now over three months later I am still waiting to get it. A couple weeks ago, my mom and I took a roll around the neighborhood to enjoy the evening. Halfway through our four block trip, I could hardly even keep my head straight to drive my chair.

I'm already up very little, but now I try to be even less until the new system comes. I am thankful though that I can still get up and out and that different supports are available. In order to try to counteract the twisting, I turn to my right as far as I can and hold when I'm not doing much. It looks kind of odd to be looking the opposite way of the TV or computer I'm watching, but I figure it doesn't hurt.

It has taken two years to get to this point and I know a new back rest won't be an instant fix. Hopefully it will improve with time, but I'll see what God has planned for this part of the quad life.

Week Home

One of my typing memory verses is Proverbs 27:1, "Do not boast about tomorrow, for you do not know what a day may bring." Due to this and other teaching, I always try to say I'm planning or scheduled to do something and not to say it will happen. That especially came true this week.

Sunday, my parents and I were getting in the van to head to church. Dad was just putting the lift up and it stopped moving. He tried all the controls every direction, but it wouldn't budge. After about 20

minutes of messing, he was able to get mom and I free of the van, but the lift was far from being functional again.

I was scheduled to volunteer a shift at the Iowa State Fair Tuesday morning, but dad already concluded Sunday that the lift wouldn't be a quick fix. Fortunately, another volunteer I know was able to take my shift.

As the week progressed and dad continued to diagnose the problem and find a solution, the news kept getting worse. The model of lift I use is no longer manufactured and parts are not available. New lifts for full-size vans don't allow me to sit up front like I do now, so that wouldn't be an option either. I was also hoping to head to the fair for a fun day Thursday, but that came and went as the lift saga continued.

Thursday evening, dad ruled out one possible problem and figured out one particular motor was causing the issue. After help taking it apart, he could easily see some electrical contacts had worn away over the years and was the culprit. After retrieving the equivalent part from my old van lift in storage, he had everything working again by Friday evening.

It proved to be a full week of trusting God and what he had planned. I miss not being able to help during my shift, but I'm very thankful that dad has been given the mechanical knowledge and ability to fix pretty well everything I use. We went from possibly needing to look for a new van to simply swapping out parts that were already on hand.

Living the quad life has challenges like this week, but I'm thankful for having reliable transportation once again. Hopefully this week will be a little less eventful, but I'm not the one in charge.

Stiff Neck

This past week has been a stiff one in the quad life. I have had more time to sit and take in my surroundings as a result.

On one of my forums recently, someone asked if anyone had noticed muscle stiffness and spasticity increase with age. I am leaning toward yes with the past few months.

After sitting in one place for a while, I expect to be stiff when starting to move again. Sometimes just an arm will twitch, other times my neck will become like cement and I can only move my eyes. The most fun is when legs and arms fly and and then my neck gets stiff afterward. The result is I end up sitting wherever I am and have to wait until everything loosens up.

On Wednesday, I had a few things I needed to get so my assistant and I headed to Walmart. Getting up in my chair, I was a little jumpy, but not bad. After arriving at our destination though, I could tell it would be a long trip. Every tiny bump in the cement or just going down an aisle I would tighten up and have to sit for 30-60 seconds before moving again. My body was acting like it was winter and I was wearing shoes and not liking cold temps. Unfortunately, being barefoot and not sitting on wrinkles wasn't helping.

Thursday was my first day to volunteer at the Iowa State Fair. The first hour went well, but as my morning meds wore off the stiffness started to return. I had gospel tracts under one hand that I had people pull out as I talked with them. Thankfully, nobody got kicked, but I had a few strange looks as to why I was talking strange sometimes and not moving my head.

Hopefully something is just being irritated and this phase will pass. I'm scheduled to be at the fair again this week and it would be great if I could be a little more mobile. Whatever happens, I'm thankful I can still get out and be active. As long as I'm not in the middle of the road, being stuck in one place for a while lets me see more of what's around me. I'll see what this week brings and go with what I'm given.

Alien Invasion

On every July 4, I watch the movie Independence Day during my flat time. It's an older movie, but the world is saved from alien invasion and wins independence. I enjoy some science fiction for entertainment, but I think a few people have been watching too much.

In late July, astrophysicist Stephen Hawking said aliens would kill us if we tried to contact them and we should stop trying. Just this week, NASA announced a new position they want to fill for an Earth defense from aliens. The job pays $124,000-$186,000 per year.

I wish I could say I was making this up, but truth is often stranger than fiction. People that are supposed to have the top minds in science are actually believing aliens exist, of which there's no evidence, and are trying to protect us from them. However, they say that believing God created the universe in six ordinary days a few thousand years ago is preposterous.

Ever since I heard these news items, Romans 1:25 has been going through my mind, "They exchanged the truth about God for a lie, and worshiped and served created things rather than the Creator..." Those that reject God will believe absolutely anything, as long as it does not involve the supernatural. This is what is being taught in schools as well as movies and TV shows.

It's very tempting to wonder why we search for intelligent life in outer space when we can't find it here. The correct thought though is sadness and prayer that they will find the truth while time allows.

This week, I'm scheduled to volunteer a few days at the Iowa State Fair at the Ark Encounter booth. I don't expect to hear much about impending invasion, but I'm praying to get to talk with a number of people. Living the quad life can be a challenge, but I can still work with those that need to hear the good news of salvation. Maybe I should apply for the opening and teach the true defender of all life on earth.

Testing Week

I purchased a pre-release of a movie called Exit and as a bonus, I received a digital copy of a book called Stressed Out by Todd Friel. It's a book I had on my list to get later this year, so I was happy to see it included. The main subject is dealing with stress and anxiety biblically and that God is in control. I started reading it over a week ago and this past week has been a good test.

On Monday, I received a call that my night nurse was having a family situation and nobody would be able to come. The routine of staying up until 2:00 A.M. is quite familiar, but still never much fun. On Tuesday evening, another nurse was scheduled to work, but she was ill and couldn't work and neither could anyone else. That made two nights in a row for late night slumber parties. Thankfully Wednesday night was covered, and I fell asleep even before my night routine was complete.

Thursday, I was scheduled for a bone density test at my local small town hospital. I have done them before, but this time didn't go well. It's common to get help and have two people transfer me from my chair to the x-ray table, but I needed to be laying the opposite way on the table than how I get out of my chair. This resulted in being held in a sitting position on a hard table and pivoting around, twice. In order to get a one of the tests, I was moved halfway off the table and my caregiver had to hold me so I wouldn't fall on the floor. With all this ordeal and not feeling well, she had to call in sick Friday making for another missed shift.

In the 32 years I have been given in the quad life, these kinds of circumstances aren't too uncommon. With a nursing shortage continue to grow, I'm very certain open shifts will increase. It is very tempting to get stressed out and sometimes anxious during tough times, but that only serves to make a situation worse.

I'm very thankful in knowing God is in control of all things. With so many open times and making my parents do more, it's hard to remember or understand how it will work out for good. I pray this week is calmer than last, but I take what God gives me. If you regularly read God's Word, but are like me and find some days challenging, I highly recommend getting the book above.

Bloat

No, I didn't eat too much Chinese, or Mexican, and look pregnant. Getting spiritual bloat is another problem completely.

With the last few years of being flat, I have been doing a lot more reading. I continue to read book after book, but never do anything with the knowledge I've been given. I do use a little on her sometimes or during school visits, but not very much. As one author put it, I'm getting spiritual bloat. Continually ingesting knowledge but never using the information, or maybe head calories.

My church's denomination, Christian Reformed Church, allows lay people like myself to be examined and get a license to exhort. It would allow me to lead sermons at churches in my area and help fill in when a pastor is gone on vacation or some other reason. The idea of getting my license has been stirring for a long time, but it has finally been poured out.

For the last couple months, I have been talking with my church's pastor and one that leads the governing committee, called classis, in my area. They went over the basic process and what some questions may be asked during examination. This week I put in the formal request to my church for a letter of recommendation to be considered for testing.

Now that I have sent the letter, the seeds of doubt keep running through my head. Would any church actually want me to speak? How many sermons can I come up with? Will churches take a quad speaker seriously? I keep reminding myself that God is in control and if it is His will, then it will happen. With the past several years of speaking in different schools and being given time to study, I feel like I'm being lead toward this direction.

If I make the deadline, testing would be in mid-September. If not, then it won't be until spring sometime and I never know where God will take me by then. I will wait and see if I start the preacher quad life or maybe later. Until then, I will serve in whatever way I am given.

Arm Maintenance

Everyone is likely familiar with heart health. It seems like I at least used to always hear about eating this or that and doing particular exercises for optimum heart health. When you don't use your limbs, they also need maintenance. This week was one for working on my right arm.

In order for my diaphragm pacemaker to work, it connects to a port on the right side of my chest just below my ribs. It has easy access when needed, but it's also a prime location for my right arm to hit

when I'm being moved or have a muscle spasm. In order to keep breathing, I have to be very careful with where my arm moves.

One thing that helps is to keep my hand in a brace or splint. It keeps my fingers from grabbing and also calms muscle spasms. If you look at some of my pictures, you can notice the splint on the arm. After all the time on, it's starting to get very worn out, so I went to get it replaced. Like everything medical, the therapist looked at my current brace for about one minute and ordered a new pad that will hopefully come in a week or so.

The second visit last week was to get a Botox update. Botox is often used to reduce wrinkles, but it can also reduce muscle tightness. It works by blocking nerves and large doses makes it so a muscle won't move. Unfortunately, it wears off and needs updating about every three months. The injections I receive help to deaden the muscles that bring my arm in and reduce the risk of hitting my pacemaker. It also means the arm is free of wrinkles!

From simple to complex, I'm thankful these options exist to help in the quad life. With two visits to Des Moines, it also meant I could do two bike rides and keep my leg muscles built up. Their may come a time I need to do more for preventative work, but these methods work for now. Even living with results of a fallen world, God has given us many ways to overcome.