Activity List

Imagine if you were told you only had a few months to live. What would you do? People often talk about having a bucket list, things they want to do before kicking the bucket. They can be good lists, but what would be your priority?

In many ways, that's what I feel like I'm doing now. Just after camp, I was told my main night nurse would be leaving at the end of August, two months away. I haven't been very successful, but I have been trying to do favorite or delayed activities before that time comes. One of them happened this weekend.

Friends at the park

Early this summer, my best friend, John, said he would like to try to visit this summer while his kids were out of school. I mailed him Tuesday to see if a time was still possible to come and he arrived late Friday afternoon.

The last time John came was May 2017. We frequently talk via Facetime and messenger, but it's not the same as in person. Seeing how much John's boys have grown was fun and getting to interact with them more. Discussions about life's struggles are much better done in person and working through possible future scenarios.

Just 26 hours after they came, it was time to head home again. It was a quick stop, but I'm very thankful it was able to happen. I learned that my time is shorter than expected and instead of late August, the nurse is leaving on the 14th.

Next month's schedule has several weekends without coverage that will make days difficult. I am also very uncomfortable with one of my current night assistants and see that her hours are increased. I'm thankful that my parents can sleep when she's here, but it means sleepless nights for me as I count the hours to her departure.

My short list of activities I hoped to do before losing coverage will not be completed. As the new schedule starts with decreasing coverage, I don't know what the future holds. Whatever comes, I'm trusting God's plan for this quad life and pray I can still be an active member of the community.

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.

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.

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.