Memory Lane

Work has continued to be slow the past few weeks, so I have been continuing to work on writing. Composing an autobiography is turning out to be fun and a bit frustrating.

I'm currently up to early grade school and I have been remembering all that was going on during that time period of life. Personal computers weren't common in homes at that time and I watched a lot of Discovery channel and other TV. I also played with toy trucks and tractors, Micro Machines, and Legos.

I remember sliding bricks up on each other as I constructed whatever came to mind. When it was in place, my stick worked as a convenient hammer and I tapped it in place. More closer to wack it in place, but either wording works.

A couple years ago, our friends kids were over to open their Christmas presents. One of the gifts was a Lego set. I managed to persuade a few pieces away from their owner so I could help with the project. It probably took me five minutes to get three pieces together as directed and I realized my mouth is not what it used to be over 20 years ago. I think my dentist would be getting a visit from me if I tried such a project now.

Along with the fun times, the quad life was also present. I had surgery to place a bigger trach as I grew and needed more air. The diameter of the new hardware was fine, but nobody checked the length. I was back in the hospital a few days later with a collapsed lung. The trach was too long and was only going into one lung.

Trying to remember what year events occurred is a challenge for the early years as well. I can only have so many "around this time" and "one day" phrases before it gets hard to read.

Whenever I look back, I can easily see God's hand and His leading along this path I've been given. I'm sure as I continue, memories of the fun and not so fun times will come to mind. Hopefully this week has more of the former than the latter.

Loss in 2018

Social media often receives criticism about being an invasion of privacy, spying on people, and a cause of social issues among teenagers. Some of this can be true, but it also allows people to connect with each other that may not have been able to otherwise.

When living the quad life, you can sometimes feel a sense of isolation. In most cases, you're the only person in the area with a high level spinal cord injury. Through the use of social media, I can connect with other quads and there families and share highs, lows, and trade tips on what does and doesn't work. It's not likely I will ever meet in person with most of these people, but I still develop friendships that are more than virtual.

Not long after college, I was active in an online community of people with various levels of injury. I connected with a member, Ami, who's husband was a fellow quadriplegic. In her blog,

her husband, Chad, as Wheeler.

In January, he was diagnosed with a rare condition that his brain was shrinking and went unnoticed due to his quadness. He passed away on February 4 and his epic after party, or memorial service, was held yesterday. Chad is the second quad I've known to die in 2018.

Wheeler was a quadriplegic for nearly 30 years and the second for around 20. Neither of these men were on mechanical ventilation all day like me, but still had similar injury levels. This Tuesday will be my 33rd anniversary of entering the quad life.

More and more often I'm reminded of the brevity of life on earth and how what is here today can be gone tomorrow. I'm thankful for the years I have been given this far and however many remain. However, I have not used every moment as I should and have wasted much time over the years, but try increasingly more to make wise time choices.

Wheeler was like me and found ways to do activities that quads don't generally get to do. He went boating, parasailing, surfing, and much more. I was ahead of him though with zip lining and tower climbing. Chad was also a caring husband and dad that loved his family.

I regularly hear requests for help in funeral expenses when a fellow quad dies. For some reason, just because I can't breathe on my own, life insurance companies won't offer a policy. Six years ago, I did find a way I can save for funeral expenses and am now nearing the halfway point in funds. By that rate, I still need to stay around for six more years with continued savings!

In the time I've been given in this life, I continue to work more toward serving God and helping those around me. This year has given me reminders to not waste opportunities as soon they may be gone. In the week ahead I will continue to try and cherish every minute.

Long Snow

As winter drags on, I'm hearing more people asking, "Is it spring yet?" I'm included in having the same question. We had snow a few times this year, but it seemed to melt a few days later with warmer temps. Unfortunately, the latest rounds have deposited several inches and the cold is staying as well.

One thing I hear a lot of people say during winter is that they are tired of clouds and want to see the sun. For me, I can't say I'm really bothered if it's a clear day or not. Bright sun on the white landscape is almost blinding and I almost prefer some cloud cover until everything melts.

Winter does also seem to pass slowly, at least compared to the summer. When I was in the hospital in November, a few people sent balloons for my birthday. There were originally five, but two of them have kept their helium and are still anchored in my room. Looking at them reminds me it has already been over two months even if it doesn't feel like it.

I also have an escape from winter, at least in my head. I recently purchased a game called American Truck Simulator where you drive semis around the southwestern U.S. I have driven several in game days and so far have always had clear blue skies to live my dream of driving truck. When I'm flat, I also do some virtual farming which generally includes clear sunny days as well. Even though it looks cold and dull out my window, I can experience better simulated conditions.

Ecclesiastes 3 says for everything there is a season. During the warm months of the year, the land produces its crop and we enjoy the bounty God provides. Winter gives a time of rest before another season of growth comes again. Those who work the land can also take time to prepare for the next year and spend energy on other endeavors, such as reading and playing simulated farming!

Anticipating what may come is good, but don't forget to also use the time you currently have.

Friendly Voices

In early 2003, I took my final college test and officially earned my degree. For the following six months, I gave out a multitude of résumés, had dozens of interviews, and held a few temp jobs. Unfortunately, I did not find anything permanent and the state agency helping me find work, vocational rehabilitation, said not to expect to get hired and gave me numbers to nursing homes.

This did not sound like God's plan for my life, so I moved back in with my parents. During school, I started working on a few web sites for my church and a few others and thought to try web development as a career. It started out pretty well and in 2006 I started working with another church's web site, I'll call them The Rock.

I have never met anyone from this church, but still felt part of it. Every week, I listen to Scripture

readers and sermons to put online. Posting pictures, monthly potlucks, class schedules, I knew everything that was going on at church. It has been years since I needed to look who was preaching, I could tell by voice who was giving the message as I knew all the regular speakers.

Unfortunately, a new pastor came to The Rock in 2017 and he decided to not only take care of the congregation, but also the web site. January marked my last time updating sermons, seeing the weekly bulletin, and knowing everything that was going on each week.

Yes, they were a client that paid for my services, but I felt like more than just an independent webmaster. Maybe I get too involved with some clients, but I think it's part of trying to help make their online appearance the best it can be. I know I'm not a great business man, I have a hard time charging for an hour of time when I only worked less than ten minutes. It's what pays the bills, but still doesn't feel right.

In January, I had a total of 5.5 hours of paying work for the entire month. The Rock was 1.75 of it and an infrequent client was another hour. Moving forward, I'm now down to one regularly active site and a few very minimal sites. That doesn't cover much time in a month.

As of today, I'm not sure what God has in store for me. I have been asked for years about writing a book and have started to make an attempt of it. I also contacted several schools about speaking, but haven't heard back from any of them.

The quad life is like any other with ups and downs. I'm very thankful for all the years of work I have been given and will wait to see what comes next.

Cough House

From what I have seen on the news, the flu has been very wide spread this year. Iowa has been hit hard as well with schools low on attendance and hospitals busy. Mom had a doctor's visit due to paperwork for me, and the bug entered our house.

She has been having trouble with coughing and tiredness for over a week now. A few days later, dad also started having trouble with a cough, chills, and not feeling well. He has not had it as bad as mom at least and is getting towards recovery. Thankfully, as I write this, I have stayed healthy without any problems. However, that gets to be a challenge in the quad life.

First, I wish that I could help them more. For five hours every evening, and weekend days, I don't have a caregiver. So instead of resting and not doing much, they need to help me. I try to do the absolute minimum I can to both allow rest and limit my exposure. However, I'd much prefer helping prepare and serve chicken noodle soup for them instead of the other way around. Unfortunately, that's not the life we've been given and I look more to God for His direction.

When the flu season is around, it makes me wonder about how best to stay well. I think there is a thin line between somewhat healthy germ exposure and completely living in a bubble. Yes, when someone is sick with something contagious they need to take precautions not to purposefully infect those around them. However, if you are never exposed to anything, the body's immune system doesn't build up antibodies to react when germs come.

Maybe in some ways I'm more in the direction of little exposure to germs. A common warning is to wash hands frequently in flu season. My hands mainly make for good decoration at the end of my arms and never touch anything, so limiting exposure. I also don't go out much this time of year, which also helps.

For all those struggling with any type of illness, I pray for fast and complete recovery. It's a reminder that our once perfect world is no longer what it was and makes me look forward to what is to come.

Alexa, Do Something

One of my Christmas gifts was an Echo Dot from Amazon. It isn't something I had on my list, but a novelty item my parents thought sounded interesting. When I first saw it, my thought was, "That's neat, but what do I do with it?" I have been learning the last few weeks and it's starting to grow on me.

Without the use of my hands, most people would think voice activation and I are very good friends. It is true for some living the quad life, but not me. I last tried voice recognition software when I started college and was glad it didn't record my thoughts. Unfortunately, it barely registered my voice either and I found typing to be much easier and faster. It is now nearing two decades later and I still haven't changed.

Every month, I use an automated system to report my income to social security. Most of the process works fine until I have to say and spell my last name. My diaphragm pacemaker makes me take a breath every four seconds, whether I want to or not. I can't say and spell my last name in four seconds and make it clear. The automated machine usually works through my pause for breathing, but we have had words other than my name before.

So now I have this little tuna can size box that only works by voice. To activate it, you simply say the word Alexa, and then have it do something. Ever since setting it up, I get a few emails per week on learning Alexa skills. I'm slowly learning, but I'm generally liking it so far.

When I get up and go through my morning routine, I tell Alexa good morning and she responds with some trivia about the day. I have used it a fair amount to remind me of various things I need to do as well, but what I say and what it repeats are not always the same. If nothing else, it saves on sticky notes at least. Playing music is another one of its features, but my Amazon music library consists of only a few songs. If it will connect to iTunes someday, then I'll be all set.

Friday was national popcorn day, according to Alexa, and I posted as such on Facebook. It started a conversation with another quad friend that has several Echos and is automating his entire home. I don't see me going that far for quite a while, but the possibility is intriguing.

This week looks to be another calm one. I'll see what trivia my tuna can gives me keep learning as we're given more technology to help in this world.

Medical Equipment Fun

Every day, I use a number of supplies for various functions. It's generally a set number of items that I can track how much I need to have on hand. Every month I order what is needed and have it delivered to my house. Most months are pretty similar to each other, but with some variation. This has been one of my regular activities since high school.

Even with the routine, my medical equipment (as insurance classifies supplies) provider regularly makes mistakes. Errors can be an incorrect quantity sent, incorrect billing to insurance, or a combination. Through the years I have become very familiar with having to call and get corrections made for my orders. Unfortunately, it seems to be a trend with more providers.

In October, I was finally able to order my own F.E.S. bike from Restorative Therapies like I've been using in Des Moines for the past two years. It finally arrived in mid-December as an early Christmas present. A technician came a few days later to set everything up. As he was working, I noticed something was missing, the correct pedals.

I have small feet, and the regular bike pedals I have been using are about twice the size I need. When I talked with my sales representative in spring 2017, she said pediatric pedals were included with all new machines and they would fit me better. That is what was missing from my new bike, only the regular large option was included.

My setup technician put in a request to contact me about switching them out, but I didn't hear anything after a week had passed. So once again, I called about getting the correction made. However, I now had a different sales person than I talked with last spring and her answer was that they were available, for a large price.

Fortunately, after they were reminded of what I was told and supervisors had been consulted, the small pedals were on their way. They arrived just before the year ended and were promptly swapped out with the original large version. Now I can bike at home without my feet turning sideways. As of today, I've averaged over three rides a week and have been noticing calmer legs more often.

I'm very thankful that technology exists in various forms to help me function through the quad life. Keeping everything straight can be frustrating, but also glad when it works. I look forward to many more miles ahead and thankful for God's provision.