Monday, October 5, 2015

Chilling Down

The last few days have had a definite decrease in temp across Iowa, and I don't like. Thursday was a day to ride bike in Des Moines, and shorts are required in order to get the electrodes placed. The morning was just in the 50's, but it didn't feel bad if I stayed in the sun.

As I rolled up to the hospital entrance, a man wearing jeans and a sweatshirt walks out. He looks at me, wearing a jacket and nothing from knees down, and just slowly shakes his head as he walks off. Unfortunately, I'm guilty of similar treatment of others.

There have been several times over the years that I have seen people wearing shorts in what I considered cold weather (30° or less). I've wondered in my head how they could stay warm in such an outfit. Not knowing the reasoning for my choice of wardrobe, the sweatshirt man at the hospital was likely wondering the same. I think there's a lesson to be learned from this experience.

Friday was my first school talk for the year and it was another chilly start to the day. This school was two classes of second graders, about 10-11 per class. The first one had won a party day and everyone got to wear their pajamas for school. I can't say I've ever spoken to a class in pajamas before, but it was fun. Both classes were pretty calm compared to some I've had, but they still asked good questions and seemed to be catching on.

With being out on cool days Thursday and Friday, I was cold even in the house Saturday. Going to church Sunday didn't help with waking up to 42° on my outdoor thermostats. I kept the sheet and blanket on all afternoon yesterday and this morning as well. I finally warmed up about lunch time today, but am starting to feel the chill again, even at 75° in my room.

Every year is an adjustment period as the weather changes from warm summer to cold winter. Temps in the 50°-60° range feel chilly now, but will feel nice and warm come March next year. I'm thankful to be living in a warm house though and able to remain active in the community, even if this quad body complains.

Tuesday, September 29, 2015


It's rare that I take more than one vacation er year, but it happened this past weekend. In June I was able to visit the Creation Museum and CHAMP Camp and this most recent to northern Indiana. A friend of mine, Jeff, had a commitment ceremony.

Jeff does not have a spinal cord injury like me, but he does have similar needs. He is unable to use his arms or legs, requires mechanical breathing, and uses Medicaid for funding. If he, or I, got married officially according to the state, he would no longer qualify for Medicaid and couldn't receive medical funding. Therefore, this ceremony was the same as a wedding in that the couple vows lifelong commitment to each other, but without the state paperwork.

Groom and I waiting to roll in.
The ceremony was definitely unique for weddings I have previously attended. This was much more laid back and "play it by ear" than I've experienced. I was the best man for Jeff and his younger brother stood with us as well, when he wasn't tending the music. I'm glad I was able to support Jeff in his milestone of his life and pray for many happy years ahead for he and his wife.

Last week, I wrote about Ken and the unexpected turn of events he had. Unfortunately, he is still in the hospital in Iowa City, so we stopped to visit him on our way home. Thankfully, he is able to somewhat speak again, but it looks like their will be a long road to recovery yet. My experience required two weeks in the hospital and I'm guessing it may be similar for Ken.

Unfortunately, I have a lot of experience of not having many friends outside of family. When you live with a severe disability, it is hard for people to understand the challenges of daily living and often shy away. Past birthday parties have mainly been relatives with one to two friends able to come. For these two friends, I'm glad that I have been given the ability to sit alongside them in times of celebration and struggle.

In the quad life, and every life, we need to be thankful for those God has put around us. May we all have someone to turn to for all occasions in life.

Tuesday, September 22, 2015

Schedule Change

I had on my calendar for today a trip north to Waterloo. Ken is a friend and has been a fellow quadriplegic for about 25 years. For the past 15 years, he has been forced to live in a nursing home in Waterloo.

About two years ago, a church started visiting him regular and today we were going to see Ken's baptism. This was an answer to prayer and I was glad to be able to see this milestone in his life. Unfortunately, another one of the unexpected times popped up last week, but not for me.

Last week Ken was rushed for emergency surgery for colon trouble and is still in the hospital today. In 2010, I had similar problems while working at CHAMP Camp in Ohio.

My belly looked like I had swallowed a watermelon whole. The head medical people sent me off to the hospital where I had surgery for a kinked bowel at 1:00 in the morning. For nearly the next two weeks I stayed in the hospital with an NG tube in my nose and unable to eat, but still watch TV with food commercials.

Since he has been in the hospital, I haven't been able to speak with Ken, but have communicated through friends and relatives. I'm praying he'll have a shorter stay than I did, but I'm guessing he's in a similar situation.

In Matthew 6 we're told not to worry about tomorrow, for today has enough trouble of its own. I see that pretty well every day, but especially when times like this arise. We will most likely plan another day for baptism, but that will be some time in the future.

Whether you're living the quad life or not, live each day to the most you've been given, for you don't know what tomorrow will bring.

Sunday, September 13, 2015


My parents try to take an extended vacation every fall if we are able to hours covered for assistance. Thankfully, everything worked out and they left last Wednesday for a ten-day trip. That meant the house was all to myself and had an extra bedroom. Therefore, my BFF came over with his son for a few days to visit.

John just moved back to the Midwest after living near Washington D.C. for several years. We've talked many times via webcam and messages, but it has been about six years since we've seen each other in person. This was also the first time I met John's two-year-old son, TJ, in person.

I have been around kids for extended periods at camp, but not as young as TJ. It was a fun experience getting to have him around for a few days. He didn't seem to be too scared about my chair, mouth stick, or me doing things while in bed. Other kids that have met me are usually a little unsure at first, but that wasn't the case for TJ.

He wondered around without batting an eye at my chair and chatted with me just like everyone else (my caregivers) that was around. Our group strolled down the street Friday afternoon to the park to play for a while. TJ easily rode on my lap the few blocks home and almost fell asleep before we arrived.

After TJ was in bed for the night, John and I stayed up and just talked about various topics and got caught up. After staying up to 12:30 A.M. two nights in a row, we hadn't solved all the worlds problems, but it was great having him to talk with again in person.

The visitors had plans at home Saturday evening, so they left about mid-morning after a four-day stay. With them living closer again, I hope to make it at least an annual event, but we'll see what God's plans are for that. As TJ gets older, I could see trips getting both easier and harder.

This week in the quad life has been great for looking back at times past and possible future activities. We'll see what comes after a week of having the house to myself.

Monday, September 7, 2015

Labor Pains

No, I'm not giving birth. If I was, I don't think I would need to blog about it as it would be in the news already. In this past week we have seen work ethics strongly challenged and I think it's only the beginning.

If you haven't heard, a county clerk in Kentucky, Kim Davis, refused to issue marriage licenses to same-sex couples. Defying court orders, she continued to not approve licenses citing it was against her Christian values. The last I heard, Mrs. Davis is now in jail for her actions until she changes her mind.

I commend her standing up for her faith even to the point of being jailed. Unfortunately, it shows very strongly how far this country has come in despising Christians who stand on God's word. Some comments have wondered if a Christian can work in public office anymore and what, if any, legal backing business owners have.

When preaching about Christ's resurrection to the Jews, Peter and John were arrested and commanded not to speak in this manner any longer. They responded by asking if it is better to serve God or man (Acts 4:19). Man's laws continually change and aren't always in accordance with God's law. For Peter and John, as well as many others in scripture, the answer was to serve God. For Mrs. Davis in Kentucky, the answer appears to be the same.

We also read that if the laborer does not work for the Lord, he labors in vain. With the current political landscape becoming more hostile to Christians, it is becoming increasingly difficult to fully labor for the Lord.

Many of the freedoms that this country fought for are now quickly being taken away if you don't agree with the current trend. I pray this doesn't become worse, but God has told us in His word that it will. Food for thought this week in the quad life. When asked to do something against God's will, who's command will you follow?

Sunday, August 30, 2015

New Wheels

Power wheelchairs are supposed to last about five years. Since I got my chair in about 1996-1997, it has filled its life expectancy and then some. With parts getting hard to find and it starting to show its age, I started the process of getting a new chair eight years ago.

After looking at several options, I found one that I thought would work. However, after five years of frustration and finally legal assistance, that chair is gone and I started again early this year. I'm happy I can finally say I picked up my new power wheelchair last Thursday. It has been a long wait, but this looks to be a good improvement.

My dad is extremely good with fixing things, especially wheelchairs. Even with my three decades as a quad, this is only my third power chair. This is the first chair I've been able to choose the color, so I got midnight blue. Not much of it shows, but it is there. Another first for me is that this setup does not have a place for a ventilator.

It has been nearly three years since I used a vent outside my home. Therefore, I decided to leave this attachment off and shorten the total length. I still have my old chair with the vent tray if I need to go back on it, but I pray that won't be needed. The trick now is to figure out where to store my portable suction and ambu bag, but we'll figure it out.

Saturday, dad and I took the chair out around town for some testing. It worked well on the bike path, but the settings still need some adjusting. The biggest relief is that it fits well in our church elevator, with a few inches to spare! After years of having to push against the doors to fit in, it will be a nice change.

There are still a few things that need work, so I won't be fully switched for a little while, but this is definitely a big step in the right direction. Unfortunately, after getting home from Saturday's testing, dad noticed something leaking from the back of the van. Further investigation found that the rear axle needs work and it isn't going anywhere. Therefore, this week's upcoming bike ride and meetings are likely not going to happen unless he can get it fixed quickly or find something I can fit in. Church today was via radio and likely will be via computer tonight.

I am thankful to be seeing an end to all these years of working on a new chair. Now if the other wheels I use to get around cooperate, I will have well functioning transportation all around. Fortunately, we didn't have problems while we were out or when it was just my caregiver and I. We'll see what the next week brings in the quad life.

Sunday, August 23, 2015

Advice from a...

For the past few years, I have stopped at a particular booth at the fair that sells t-shirts. The booth's main promotion is the Iowa Arboretum, but they sell shirts that say "Advice from a..." Then various items offering advice. So far, I have advice from a: trout, woodlands, barn, pig, and this year's addition, firefly.

Each one includes four to five sayings that are the item's advice. Most are common phrases I've heard before, but often produce thought or a smile. A few items of advice from the barn are to hold your horses and keep your barn door closed. For the trout, he says to keep pulling and not go after shiny objects. They are fun shirts that can start a conversation or just to wear around the house.

I was thinking the other day of what I would put on a shirt for advice from a quad. They aren't quite as witty as some of my shirts, but I think they fit. Here is the list I have from today:
  • Keep on rolling
  • Go with the flow
  • Accept a helping hand
  • Go forth and conquer
  • Speak softly and carry a mouth stick
If I keep thinking about it, I may swap a few out, but that's a fairly good start. Roll with the punches was a possibility, but I didn't think it sounded quite right. Maybe someday I'll perfect them and offer them to a t-shirt company.

This looks like another busy week, so it's an early and shorter post this time. For now in the quad life, it's time to keep on rolling.