Thursday, March 26, 2015

Crowded

After World War II, many soldiers came home and started families. Everyone is likely familiar with the baby boom generation and hearing various reports about this generation. Now that the majority are at or over retirement age, medical needs start to increase. I've been noticing this for a few years, but it's really starting be obvious.

For about the last month, let's say I've been having plumbing issues. I've talked with my doctor's nurse a few times and we've adjusted my meds, equipment, and schedules. This has helped, but problems still exist. Therefore, we concluded it's time for an actual visit.

When I called on Monday to setup an appointment, the earliest I could see my doctor, a specialist, was August! This sets off a scenario in my head:

Me: "Hey doc, I'm having some major problems and need to come in to see you."

Doc: "I agree, I'll schedule an appointment for you in five months. If you're still alive, I'll see you then. If not, be sure to cancel so someone else can take the time slot."

Fortunately, there is a nurse practitioner I can see next week, but this is getting nuts. The doctor's office has a waiting room about half the size of my house and it's often 75%-80% filled. Maybe with the aging population, more services will become available, but that could be a while. My schedule isn't much better though.

Yesterday, I was supposed to have been in a meeting at church. Unfortunately, the group leader couldn't come due to recovery from a surgery. It took about a dozen emails to find an evening next week that I'm free as well as a majority of the group. I'm also working on lining up some college speaking visits this spring and attempting to find open days.

You would think that since I'm living the quad life and have a minor annoyance of a body I can't control may result in an open schedule. I am better than some people, but it does get to be tricky. We'll see what time becomes available for next week's post.

Tuesday, March 17, 2015

St. Patrick Tournament

Last week was basketball tournament week in Iowa. Therefore, I had to endure sports stuff when the regular news stories were on. Apparently there were some close games and the sportscaster showed a room full of people yelling and screaming and acting in obscene manors.

I have absolutely no interest whatsoever in sports of any kind. If a petition came up to ban sports, I would be the first to sign it and gladly work to promote it. Watching these people last week is a confirmation of my position.

What was the point of all the obnoxious yelling and screaming? Did a new medical breakthrough get announced to cure cancer, Alzheimer's, or spinal cord injuries? Did someone show the many problems with evolution and admit the Bible is God's word? Those are things to cheer about, but this was just some game that has no lasting impact on anything.

Close anyway, the coaches likely got large bonuses for taking students away from academics. In another few months, the insanity will start again. The previous year's celebrations won't matter and it goes from year to year. Some of these people can likely tell you a bunch of statistics about different people on the team. I wonder if this same person could give any information on the statistics of St. Patrick's day.

We're nearing the end of the day when a lot of people drink green beer and wear green clothes. It's fun to celebrate a holiday, but it's also good to know who we're celebrating it for. St. Patrick was started out life as a slave, and was basically an atheist. Through his time of labor, he learned to love the Lord and became an ordained bishop. He then went back to Ireland and started many churches and baptized 120,000 people.

This day we celebrate was to commemorate his death on March 17, 461. That is a reason to celebrate and give thanks. If you're one that gets into the whole sports thing, remember to keep your perspective. Be careful to cheer for the things in this lifetime that actually matter, whether you live the quad life or not.

Tuesday, March 10, 2015

Tanto

I read an analogy once by a paraplegic. He concluded that down to about mid-chest he was himself, below that was some guy he had no control over named Ervine. I liked the idea and applied it to my own life. Since my other half is constantly crossing his legs Indian style, I gave him the name Tanto.

This leaves me with control of my head, mostly, and Tanto with pretty much everything else. When I talk to older kids and adults, it works as a good illustration as to what everyday life is like. I can see everything below my head, but can't control any of it.

Every day I watch Tanto kick, slap, grope, and pinch those trying to take care of me. I do have ways of keeping him under control, but they only go so far. One of my assistants has taken the idea a step farther and named every limb. It can get somewhat comical talking to different limbs telling them to behave. However, they rarely listen since I keep control of the ears.

Living in a body I can't feel or control gets to be very frustrating some days. Having fun with the situation can greatly help to make light of what can be taken as a complete negative.

Throughout my life, I hear every now and then about breakthroughs in spinal cord injury research toward a cure. I honestly don't believe that will happen in my life, at least not for old timers like me. I do look forward to the day when I will be finished with this body and be fully restored in glory. Until that day, I just continue to live the quad life as given.

Monday, March 2, 2015

Hardware

When I talk to school kids, I tell them I can't control my body, but I use adaptive devices to do things. I then describe some of my devices, like wheelchair, diaphragm pacemaker system (DPS), mouthstick, etc. In 30 years of living the quad life, I've gone through a lot of hardware.

The most obvious piece is my wheelchair. I've heard some people get new chairs about every five years; I'm on my second powerchair. I can't imagine having gone through six chairs by now. My first one had a mind of its own and took off by itself a few times. I've had my current one since about
1996 and it has served me very well. Neither chair would have lasted nearly this long without maintenance from my dad.

Two weeks ago, we were getting ready for church when my chin control wouldn't swing away. Within a few minutes he found the broken wire under the front of my seat and had it repaired. We were off again and got to church with time to spare. The external hardware is rather obvious, but it's the internal parts that are just as useful.

In early high school, I had severe scoliosis (common for young kids with SCI) and had an 89° curve in my back. After getting rods in my back, I grew six inches in seven hours and went down to a 30° curve. The DPS with wires in my diaphragm allows me to breathe more naturally. Followed by my trache that I used for many years for breathing and still do to clear out my lungs.

I'm thankful that God has given us technology that allows people with injuries like mine to live, and go out and interact in the world. It's a major problem when they malfunction, but fortunately that isn't often. Living the quad life isn't easy, but through the many adaptive devices I use, it makes it possible to do more than people imagine.

Tuesday, February 24, 2015

Cold Busy Week

Along with last week's anniversary, it was a busy week. I had something to go out for every day Sunday through Wednesday. Not only did I have to go out, but they were also the coldest days of the week. My first day staying home, Thursday, was the warmest of the week.

I think we have the activities calendar backward in Iowa. During the winter months, when the majority of people don't like going out, is when the most activities occur. At church, the children's groups run from September through March, just when the nice months end and begin. Why don't we turn the schedule around so we're out during the warmer months?

Most people I know enjoy getting out when the weather is more enjoyable. Therefore, I think it makes sense that activities should coincide with this as well. Yes, summer camps get this correct, but they only last a week or so. Meeting every week like we do this time would give kids, and families, something to break boredom without school and not have to worry about bad weather. Tomorrow, for example, we are forecast to receive about 9" of snow. That will possibly necessitate canceling activities and keeping kids home, where they should be in cold temps anyway. Last week wasn't partially by choice for excursions though.

On Sunday and Monday, I went to hear a few talks in Des Moines given by Answers in Genesis. Tuesday and Wednesday were then with other church activities that I agreed to be part of. I enjoy participating and being active, but just think timing needs to be switched. Maybe they have it correct in the southern hemisphere. I know I could get used to having Christmas at the beginning of summer!

In the quad life, and any life, we choose what we want to do and how to serve the community we live in. Even if it isn't the most agreeable with what we would prefer.

Thursday, February 19, 2015

30 years

Thirty years ago, on February 20, 1985, the life my family and I knew was ended. With mom sustaining major lower body injuries and my high spinal cord injury, we were thrust into a new world.

In the three decades since then, we have all learned a lot. First of all to trust in God's timing and plan for the life we've been given. There have been several times that after months, or years, of planning, something we didn't expect ends up taking place.

Statistics say someone injured at age 20 and on a vent has a life expectancy of about 25 years. Someone injured at 40 goes down to just over 12 years. I haven't found research for injuries at my age (3 years), but I'm likely a little over or at the average age. I have friends that have similar stories and are more years post injury and others that passed away years ago.

Whatever the numbers say, I have been given a long time in this position and an equal amount of blessings. My parents have been the biggest gift through all these years and have gone through everything with me. Nights and days without nurses, time in the hospital, getting necessary supplies and funding, the list could continue for quite some time. Despite their own struggles though, they have helped in every way possible. Along with them are the countless caregivers I have been given and who have been a key part in helping me do the tasks I've been given.

Unfortunately, as time passes, it seems the challenges continue to expand. As I get older, pressure sores and skin issues continue to be more of a problem. Regular readers will know the posts of when I am flat in bed and not able to do much. This past year of the extreme funding struggles and continuing issues with equipment and other needs. I have had times that I couldn't see going on any longer and so looking forward to being done with the life of SCI.

When we are weak is when God seems to be the strongest. Putting full trust in His plan is often difficult, but the only assured way to go. As I work through this unique life, that trust continues to grow. With my parents aging, my needs increasing, and daily routines often uncertain, I never know completely what to expect.

I do know that I've been given these years for a reason and work to God's plan. I don't know how much more time I have, but be it short or long, I will continue to live the quad life.

Tuesday, February 10, 2015

Watching Nature

Winter in Iowa is still holding on strong, but it is not keeping a tight grip. The snow we had the first weekend of this month retreated a lot this past week and Saturday was nice enough to get out and watch trains.


As the video shows, snow was still on the ground, but melting quickly. Between trains we even had a window slightly open. With the stillness of the air we could easily hear the call of a red winged black bird and even a bald eagle near the river behind us.

Even with the cold and snow, God's creature continue to be busy. My bird feeder has been busy the past few weeks with the ground covered. In the coming weeks hopefully spring will start to appear and the outdoor activity increase.

As that happens, the quad life will continue looking out my side windows.