Sunday, July 21, 2019

First Encounter

In September 1985, I came home from the hospital to start life as a quadriplegic. Living in small town Iowa, I didn't have any other kids like me around.

Five years later, my parents heard about another family in northwest Iowa whose son had received a spinal cord injury. Chad had been injured while playing on a dirt pile and was now a vent dependent quadriplegic, one year younger than me.

The summer between third and fourth grade, my parents, dad's parents, and I made the five-hour drive to Sioux Center to meet Chad and his family. His dad was a pastor at a local church and they were building a wheelchair accessible house for them. In the mean time, Chad was staying at his nurse's house when we met.

It was great seeing another boy who used a wheelchair like me along with a vent. Racing each other in the gym at the local college was fun as well as watching Chad play Nintendo with the same hands-free controller I used. We both had to have medical cares done, so the day ended before either of us wanted.

That was the only time we ever met in person. Since then, I've had the opportunity to meet and work with other quads, both kids and adults. I still remember first meeting Chad 29 years ago and not feeling so alone. Since then, we corresponded a few times via email and other means, but very little.

I learned through Facebook that Chad died last week on July 13. I watched his funeral on Thursday via live stream, but wish I could have gone in person. Even with little communication, I still felt as friends. It is part of living the quad life that has been common this year.

During the service, the pastor talked about Chad's strong faith in God and the witness he had for so many. I pray to continue to do the same as long as I am able. I have seen the passing of more fellow quads this year than the last few combined. It serves as a reminder to always be thankful for the time we have been given and looking forward to the life to come.

Sunday, July 14, 2019

New Hands

A common problem for those in the quad life are contractures. Joints in fingers, toes, wrists, ankles, and everywhere else can become stiff with decreased flexibility and even get locked in place. I've been blessed with excellent care and have few problems with this, but still have some.

I believe it's partly due to always being barefoot, but my feet have no trouble at all. My knees don't straighten out as far as they should, but come pretty close. Everything else is pretty close to normal, except my hands.

Both wrists have limited movement and my left hand, if left alone, points sharply out to the left and is hard to straighten. Each one varies, but all ten fingers have stiff, partially frozen, joints like to curl under if not positioned correctly. Looking at pictures when I was newly injured, my fingers and hands adopted this position very early.

In order to help stop further problems, I wear braces or hand splints. Unfortunately, like everything, they wear down and need replaced. At night, I've worn a very substantial brace on my left arm for several years. However, it stopped keeping my wrists and fingers straight long ago and has been causing red areas. I wear my right splint day and night to keep my hand from grabbing the wire for my diaphragm pacemaker. They weren't designed for that much use though and the Velcro quickly degrades.

Back in April, I visited with my splint person to order new ones and finally went this week to pick them up. You have likely been in the medical field too long when new splints make you excited, but I was looking forward to getting them. Putting them on in the office, it was great to see both hands laying straight again.

I kept them on through lunch and the trip home from Des Moines and didn't see any signs of trouble. My night nurses have reported they like the change and it is keeping everything straighter. The only question now is how long the new hardware will last. I'm thankful we have been given such devices to help with fallen bodies and hope to see improvement ahead.

Sunday, July 7, 2019

Slowly Learning

Tomorrow will be two weeks since I had my tooth removed. This past week has been one of slowly learning my new boundaries.

I have helped adults and children with spinal cord injuries learn how to adapt to their new body. Using adaptive equipment such as wheelchairs, mouth sticks, and electronic aides can be a steep learning curve. This experience has taught me again what it's like to start from scratch.

For most surgeries, the doctor has prescribed pain medicine. However, since I can't feel whatever was worked on, I've never taken any. This is the first time I remember taking anything more than once to help cope with major discomfort.

On Tuesday, my day assistant wasn't able to come and dad took most of the day off work to stay with me. We had a few errands to run, so the two of us left the house a little before lunch. Dad and I stopped at Culver's and then parked in one of the nearby campgrounds overlooking Iowa's largest lake. I thought chicken strips would be easy to bite for our picnic, but I was wrong.

Applying force to the left side of my mouth resulted in pain with subsequent chewing compounding the problem. I was only able to push through about half the meal. After lunch, the next stop was Walmart to satisfy our lists.

Driving through the store, pushing on my wheelchair's controls with my chin resulted in pain and every movement. I tried using my upper lip or other parts of my face, but they didn't work well enough to safely drive and not run into anything.

Thankfully, one of the stitches fell out Friday and has made a vast improvement. I'm still completely relying on others to help with computer control when I'm flat, but it's becoming easier when I have sit time.

While watching an abundance of YouTube these past two weeks, I have been thinking of the time I took for granted and didn't use my mouth for beneficial tasks. Instead of writing or working, I took time for entertainment instead. It's a problem in the quad life and everyone that needs to be cautioned against. I look forward to further progress this week and using the time God gives me for good use.

Sunday, June 30, 2019

Rapid Change

In life, you can be traveling along the path you're given and everything can be going well. A sudden unexpected bump can change your course and take you down unexpected paths.

Last week, I wrote about my challenges at camp this year, but I wasn't the only one. Bradford Woods is heavily wooded with trees completely covering most trails. With all the rain, we saw where one large tree had been uprooted, dirt and all, and had damaged part of the trail. In a different area, another cabin was returning from the zip line.

Along the path, one boy was being pushed in his wheelchair by one counselor and another walking beside him. Without notice, a large branch fell and hit him in the head, cracking his skull. The two counselors directly with him were uninjured. The camper was taken to the hospital for surgery and a few hours later was acting as normal and sad that he wouldn't be released in time to return from camp. Through no fault of his own, or others, plans quickly changed.

Two days after returning from camp, I was starting to recover from the week and glad to have my regular routine. My main night nurse was partway through my routine when she told she had resigned and will be leaving in late August. She plans to return to school full-time to pursue a different career. This nurse has done the nine-hour shift four nights a week nearly every week for over five years and I have been very thankful for her care.

The head of the nursing department called to confirm what I already knew. Finding nurses is very hard, even harder for nights. They will be advertising in my area, but can't guarantee when or if anyone will be found. He suggested to also try social media as some clients have had success with finding help.

With this news, I went to the dentist Monday to have my tooth removed and get the implant. After an hour of pain and discomfort, my lower, front right tooth was pounded out. However, the implant could not be put in and I have to wait until December to get the tooth. In the mean time, I have a large gap in my mouth.

I'm right-handed, which in the quad life means I mainly use the right side of my mouth. Using my mouth stick is a challenge and I can't use it at all when I'm flat. In addition to waiting until December, Iowa is changing dental plans for Medicaid users on July 1. That means the approval I currently have for the implant will need to be redone. That process took over a year the first time.

If a nurse can't be found, it's very likely I'll need to go to a care facility. A new group home has begun construction in my hometown, but after several emails the facilitators of the home said they will not have people with my care needs. That would mean I have to look at the four nursing homes in Iowa that take vents, none of which are close to home. Moving may also readjust my December tooth appointment. In retrospect, having my tooth removed at this time is probably one of the worst decisions I've made. However, it's not one I can undo.

God has given me 34 years of care as a quadriplegic and I know He doesn't stop. Similar nursing situations have come up in the past, but they worked out. I pray someone is found, but am ready to serve from a nursing home if needed as well. It has taken me three times longer to write this blog than usual with some pain, but I can still get it done. I pray this week goes better, but have learned to roll with changes and follow God's lead.

Sunday, June 23, 2019

Cold Difficult Week

For my 15th year, I spent the last week volunteering as a counselor at CHAMP Camp. It was nearly the most difficult time I've had and not one I want to repeat again.

As has been usual, dad, my day assistant, and I left for Indiana on Friday morning, June 14. I've had trouble with the ten-hour drive before, but have learned to take extra breaks and drink plenty. The trip went well and our group of three got to camp late in the evening.

Rare sun near the pool
Indiana's weather has been similar to Iowa lately with cool temps and plenty of rain. The forecast for the week called for daily rain and thunderstorms and high more reminiscent of early spring. Saturday's counselor training sessions were moved indoors to avoid weather, but we still had to seek shelter in the cabin bathrooms when the tornado sirens went off.

Usually by Tuesday to Wednesday night of camp, I feel completely wiped out, ill, and not sure how I'll finish. With only a day or less remaining, it isn't too hard to struggle through to the end. This year, that feeling of pure exhaustion was deeply rooted in by Saturday night and only left me for a few hours at a time for the remainder of the week.

With lack of movement and other factors, those living the quad life often struggle with temperature regulation, especially cold. I fare better with cold than many others, but prolonged exposure affects me and I have a hard time recovering. With outside temperatures mainly in the upper 60's to low 70's and cabin air conditioning varying from 68° to low 60's, I started most nights cocooned in two blankets and pillows. Several evenings, and afternoons, I was afraid I would need to leave early. I didn't feel like I helped very much with the three boys in my cabin, but was able to some.

Two of our three campers
I didn't bring much warm clothing, but had a few times with a sweatshirt and shorts. Thankfully, with much prayer, I was able to stay the entire week and returned home late Thursday, June 20. It has now been a few days since returning and I'm still tiring out quickly and not feeling quite back to normal. Another former camper turned counselor has volunteered for several years as well. He struggled this year also and plans to take a year off. I was unsure before going this year, but now feel confirmed that it's time for me to retire. I am not as young as when I started volunteering in 2000 and age is gaining an upper hand.

With all the trouble, I was thankful to hear my three pressure sores did well. One stayed the same, one improved, and the third only grew by a very small amount. Hopefully that will allow me to stay more active this summer and fall.

Tomorrow, I'm finally scheduled for my front tooth extraction. I'm hoping it goes well, but this week will require relearning how I use my mouth stick and may delay future updates. I will see what adventures await another week.

Sunday, June 16, 2019

Transportation

For most people, getting from one location to another doesn't take much thought. In the house, walking around is an easy task and longer distances can be traversed by any car, bus, train, or some combination. Living the quad life, it isn't as simple.

Just getting out of bed takes a lot of work with me either getting picked up by hand or with a lift. Finding a wheelchair that works well for me takes years of planning followed by continued maintenance. Just to go from bed to the opposite end of the house takes 15-20 minutes. Then the challenge gets increased with leaving the house.

I can't simply hop in any vehicle, it has to have a lift for my wheelchair and be big enough for me to fit. Getting in and secured with straps to the van takes about 4-5 minutes. It's fine on nice days, but cold, wind, and rain can make it seem like an eternity.

To my standards, I have a new wheelchair with it being less than four-years-old. The van I use is about 25 years old, but works pretty well. I am very thankful that I have been blessed with these devices that allow me the freedom to get out and be active. I know this is not the case for everyone.

After giving thanks to God for these gifts, I also thank my dad for all he does. Over the years, he has become an expert at working on my wheelchairs. Some maintenance has required working with micro-switches in my chin control so I can keep moving. When I cracked the frame of my chair, he completely took everything apart so the frame could be brought to a weld shop. In less than two days, he had disassembled it, welded, and reassembled so I didn't miss a day of class.

God has also given dad skill in vehicle mechanics. Maintaining the van's motor, chair lift, and everything else to keep it working. He has also helped with my physical needs ever since birth and continues to work to earn an income for our family and provide medical insurance.

On this Father's Day, I give thanks to my Father in heaven and for the multitude of blessings He has given me through family. I pray that you can do the same this, and every, day.

Sunday, June 9, 2019

Rainbow

This week, I have been seeing a lot of rainbow decorations in the news and on social media. They serve as a good reminder of the past and the future.

Genesis 9:13 says, "I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth." God had destroyed the entire earth, all land-dwelling, air-breathing animals, and mankind in a worldwide flood. He saved one family, Noah, and representative animal kinds aboard the ark. The rainbow promise was that God would never send such a flood again.

I've seen some people claim that Noah's flood was only a local event and didn't encompass the entire planet. However, if that's the case, then God's promise to never send such a flood again has been broken many times. Just in my lifetime in central Iowa I have seen devastating local floods, including this year. Catastrophic local floods have happened many times in history throughout the world. One in more recent times was caused by Mount St. Helens and carved out a canyon 25% the size of the grand canyon. God promised to never again send a global flood, not local.

In Noah's flood, everyone who was saved had to go through the door of the ark. Jesus compared Himself as a door that if we enter by Him, we will be saved (John 10:9). Peter also said that as the world was once destroyed by the flood, it will again be destroyed, but by fire. It will also be a global judgment, not just a local event.

The rainbows I have seen recently were meant to promote a particular lifestyle choice. However, that was not the rainbow's original sign, and that meaning still holds very true today. No matter what life choices someone has made, they are not beyond God's saving grace. Whether they are lies, theft, adultery, or even murder, they can all be forgiven. Just as their was a judgment during the flood, it will come again for everyone.

I pray that whenever the rainbow is seen, in any context, that it will serve as a reminder of what is to come.