Sunday, December 18, 2011

Impact

Most people would like to make a difference in the world, an impact that will allow them to be remembered in history. Last week I watched a documentary about Steve Jobs and what he did in his life to improve the world.

In my mind, he was one of the modern inventors that had influence in many areas of the technological world. The device I'm using to type this came from his company, Apple computer. It will be interesting to watch the next few decades to see how his influence is used by new inventors and companies he worked with.

I have wondered if I will have the opportunity to make an impact on society that is remembered beyond those around me. This life thus far has already increased the average life-span of quadriplegics, and I hope that I have shown others that having a severe disability does not limit a person's potential or ability to be productive. Beyond that though, I don't know if it is the plans for my life to further help others, I can pray that it is though and that someone may be helped because of it.

While people can have on impact on society, instances around us can also have an impact. A few days ago I returned home from running errands and asked my assistant to take my sweatshirt off. Somehow, the wires for my diaphragm pacemaker were pulled and stopped it working. Despite her best efforts, we couldn't get it working again and I'm now back on the vent 24/7 until I can get it fixed. I spent 25 years on the vent and barely a year off of it, but the last few days of being on it has been an adjustment. Hopefully it won't take long to fix, but that will depend on the next few days.

There are many ways we, or items, can have an influence on someone's life, good or bad. One way I have found, through another friend, is by simply clicking. The Hunger Site is a web site that companies use to help to feed the hungry, simply by clicking. Another site is Free Rice, it helps feed people while teaching vocabulary skills.

Through these examples we can give a small part to help others, but as I listen to Christmas music in the background, I think of bigger impacts. About 6,000 years ago the original humans made a decision that impacted everyone and everything in the universe afterward. Then 4,000 years ago God gave His only son for our sins. As we celebrate Christmas, remember what it celebrates and what was given for us all.

Monday, December 12, 2011

Parties

It was confirmed a few days ago, thirty does not gain respect from other adults, at least not your parents. My family had a few friends over on Saturday evening, mainly adults my parents' age but a couple younger ladies closer to my age as well.

We weren't going out, just staying in the house to have supper, play some games, and watch TV. As usual, I wanted to stay barefoot, since we weren't going out, I didn't see a problem with it. Apparently there's an unwritten rule that this isn't allowed, my parents would not allow it in any uncertain terms. Their reasoning consisted of such things as "we don't want to see your hairy toes," "nobody would go around the house the house barefoot when it's 30 degrees outside," and "it's gross." Great substantial facts, right? Well, you'll have to look very close to find the hair and I can fairly easily find a list of people who go outside barefoot when it's 30 degrees, or less, especially in a house that's heated to the low 70's.

I've been trying to decide what to do since then. Any time I start to think about it, I can't come up with calm responses. Three years ago this exact same thing happened, and I went on a crusade to commit suicide, and came close. I know that I have also posted about this before at other times. Unfortunately, I know my parents will not listen to me no matter what I say. My entire life has been subject to their will, they don't care about my opinions.

This time around I am rational enough to not go off the deep end as mentioned before, but it is an area that needs to be addressed. These parties, or more accurately get-togethers, aren't all that enjoyable for me in the first place. I would at least like to be treated as an adult and dress as I prefer, which is barefoot. Hopefully I can come up with something, and pray for patience on everybody's part. The next planned party is New Year's Eve, so I have a little time remaining at least.

Sunday, November 27, 2011

30

I'm 30, the big three oh, three decades of life on earth. No matter how you say it, I'm getting older, just like everyone else.

I read one comment that thirty is when older adults start to respect you and kids say you're old. It will remain to be seen on those notes, but it would be a nice change for the first one to be true. After today, I'm not feeling as old as yesterday for some reason. Maybe the idea is just settling in better, we'll give it a week to see.

Over the past few weeks though, my pastor at church has been giving thanks for me achieving this milestone. In a few months I will have my 27th anniversary of being a quad. There's no debate that this has been an easy life to this point, but I have been blessed with a caring family and, relatively speaking, good health. Statistics say I should have died in my early to mid teens, even updated ones give me just another decade.

In college I had one "nurse" who liked to continually remind me that I should not be alive, that I had lived longer than I should have. I wasn't aware that I had an allowance on life span, but I guess I had overspent my allowance, according to her. It is true that high-level quads that depend on mechanical ventilation, just like me, tend to have a shorter life span than most people.

Of the quads I know at my injury level or higher, only one has a longer post injury life span than I do. He was injured in his teen years though and is now in his mid forties. I have known a number of quads through CHAMP Camp and the "grape vine" of contents, but several have passed away years ago. One that I keep track of turned thirty a few months ago, but he was also injured two years later than I was.

These past three decades have been interesting, and full of highs and ultra lows. I don't know how many I have left, but I know that I need to continue to trust in God's lead, and look nowhere else for a clue on the future.

Monday, November 21, 2011

Learning

As a web developer, I have to keep up with current trends in best practices, consumer desires, and updates in programming languages. Therefore, I took up an offer a few weeks ago to take two classes a month for the next six months in we related programming. I'm about halfway through my first course and can't wait for it to be done.

Since I quit University of Phoenix this summer I have had the tug to get back into school. I guess it's part of getting older, but I enjoy learning much more than I ever did in high school or my first round of college. Taking up this offer was a way to give in to that pull and have some direction to go in my evenings.

The course I decided to start with deals with a language called jQuery. It basically makes the bells and whistles of a site function. Without it, the site is a little off tune and flat, like most of my sites. This instructor could use more of his language in his speech though. He's so monotone that you can't wait for his video to finish. I don't know, it could just be I was expecting too much, but I'll choose my next course more carefully next time. There are a few I'd like to review again, that I know the instructor is good, so I may go there next.

Last week was my one year anniversary of pacing. I have now been through all four seasons while breathing through my nose. I'm still debating which way I prefer to breath, through my nose or the vent. Pacing has several benefits, not having the tube 24/7 is very nice. It's also great to not have the constant noise of the vent in the background. However, it's very touchy, the wires seem to be much pickier than I expected. Three weeks ago was the trip to Minnesota where I got the wires fixed, and could have died. Last week the pacemaker started beeping again when the wires were bumped. This isn't a good sign for longevity at all. Hopefully it isn't anything to be concerned about, but I'll have to wait and see on that.

That trip up north was a learning experience as well, I learned I'm too trusting of my caregivers, and myself. For a few weeks before the trip we had some difficulty in cathing, but didn't think too much of it. I asked if my supply bag was packed with all the necessary pieces to cath while on the road, and my assistant said yes. Well, nearly five hours away from home, dad and I learned that answer was no. Everything was in the bag except for the required tubes to do the deed.

This meant that after half a day of drinking and normal activities I would have to hold it until we got home. For a high quad like me, this means suffering through a body that's reacting to something wrong, needing to pee, but not reacting correctly. If left untreated it can lead to a heart attack, stroke, and possible death. Thankfully God was with me that day and I didn't have any severe reactions, I just sweated through everything I was wearing and had my version of hot flashes for a few hours.

In less than a week I'll be thirty years old. That sounds old to me, an age that two years ago I wanted to be dead before I reached it. The Lord has carried me through this far with many lessons along the way. I will see what the next thirty years, and this week, have in store.

Monday, October 24, 2011

Time

Time can pass quickly, or not fast enough, and can go both ways at the same moment. My last post was so long ago that much has happened, more than I dare to remember, or know where to begin.

In late August, my diaphragm pacemaker started having a short. At first, just a few positions would make it alarm, but it kept getting worse. I contacted Synapse about it and they would come to Iowa to fix it, we just needed a place to do it. I first tried Dr. Hicklin's office thinking my pulmonologist would be the best place to start. After a few weeks of back and forth though, he decided no. A week later he changed his mind and said yes, but then the Iowa Clinic said no. In trying with my GP in Pella it took several weeks again before the hospital said no. Thankfully, the company is doing a repair for someone else in Minnesota next week, so we are driving there and Synapse will do the repair.

When it finally gets done, that will be over two months that this has taken to get a repair done. My one year anniversary of pacing is on November 15. Therefore, I've spent almost a quarter of my time pacing trying to get it fixed. Weeks can quickly turn into months, but I sincerely pray that this will not be the future of this system.

Also in August I got a new computer, an Apple iMac. Ever since I started college I have been using laptops of various types, IBM, Dell, and Apple. Apple's desktops are quite large, so dad built a contraption that hangs from the ceiling and rolls toward and away from me. It is a great idea, but it meant waiting two months before using my computer. Going back to a desktop has taken a little getting used to though.

I like just having a keyboard in front of me, but the screen not being so close is different. It has made me realize that my eyes are worse than I thought. I haven't resorted to using my glasses much, but I'm afraid I will have to more than I would like to.

My last post mentioned wanting to be busier than I had been. That prayer was answered a few times over. No, I haven't been working every minute since then, but their has been more work in general and several very busy weeks. I've been given more new clients this year than I believe I have ever had in one year. It has been a blessing to be busy and I pray that it continues and I can be productive.

About a month ago I was told about the Johnson family. They had been in a car accident while on vacation and their six-year-old daughter was killed. Two surviving daughters had multiple hip and leg injuries and their three-year-old son is now a quadriplegic. Reading their story and how their son is progressing brought back memories from so many years ago. His mother said he was grinding his teeth in an attempt to talk to him.

I remember doing that as well and thinking in my mind that I was speaking. It sounded exactly right, every syllable coming out through my teeth just like I wanted them to. Fortunately, he went home with his parents and sisters only three months after his injury. This seems very quick to my thinking, but I will watch them and see how he progresses. I so wish that I could go see them and play with him and show that using a mouth stick is okay. Unfortunately, I know that is very unlikely to happen, but at least we can be in contact.

Well, CHAMP Camp and many other things remain, but my time is running out. Hopefully I will write again before the year is through, and many times more.

Saturday, February 26, 2011

Laziness, or Lack of Ambition

Okay, I admit that the title is saying the same thing twice, but the one sounds so much better than the other. In any case, I think it describes me way too much lately.

A friend gave me her blog link yesterday and I've started reading through it. Some weeks have six entries in them while others have less, but it looks like at least a couple a week. I'm not saying I'll never to get to that regular of writing, my lack of skills could use it, but it is quite an achievement to get to.

Yesterday was a fun night for young adults at church. I had been told there was one activity I could do, and that's the exact amount I did. There were others that I could have done, but didn't feel like trying. I'm not sure why, but I stayed my usual self and stayed on the sidelines watching everyone else. After activities were concluded, the pastor and I talked briefly about a discussion going on in our denomination.

One of the Christian colleges we support has two professors that are being quite vocal in saying they don't believe the early parts of Genesis. My pastor doesn't agree as far as these profs have gone, but he really doesn't see the point in believing Genesis as written or some of the other views. Two years ago, this is what I had extensive teaching in. I know the possible consequences and how to refute thinking against.

Unfortunately, I was typical Joel and didn't put up a defense. I'm a Christian, I love the Lord, have studied His word extensively and have helped others do the same. I have prayed for opportunity to use the knowledge He has given me, but when the time comes, I sit like a non-moving bump on an expensive log.

Take today for example, it's two days away from the last business day of the month. I could be preparing bills, working on loose ends on a few projects, and several other things. What have I done? Play games, chat via text, and read a blog. Other than adding church, tomorrow will be the same, but at least it's the day of rest.

I'm taking way too many days and hours of rest lately. At this point, breaking that habit is going to be very difficult and unclear how to start. I have been given knowledge on many subjects, but I can't get enough will to actively use it. Starting Monday, I need to make every hour, every minute, of each one I'm given to be used in a productive manner. I fear that if I don't begin, I will continue down a self-destructive road of letting opportunity pass that I cannot afford to lose.

Thursday, February 17, 2011

Tasting the Future

No, I did not eat my watch. Today, I got a phone call that isn't so unusual, but ended with a reminder of our human frailties.

Earlier this week, my primary night nurse started having major trouble with a leg injury. Today, the scheduler from the nursing agency called that she is in the hospital and will be gone for at least a week. Tonight, in about an hour, my two night a week person is scheduled to train someone from another agency to help fill the shifts. Right now, how many, if any, will be covered is uncertain. Unfortunately, this isn't new, but comments were.

When my dad was out helping my aunt, mom commented that she didn't know how much longer they could do this. Tomorrow, Friday, she and dad were planning to take a much needed two-day vacation, but that is now unlikely. With unseasonably high temperatures this week in mid-February, a mini getaway was welcome, and relief from never-ending stress at dad's work.

Mom's statement says what I feel though, my parents are in their mid fifties, and most of my nurses are at that age and above. Two especially, more likely three, of my four regular assistants are also not in great health. When my parents should be looking toward retirement, they are instead not seeing an end, or change, in the future to current levels of need.

As I have heard at least twice this week, and as my title says, I need to learn to rely on God more, and know He has a plan. In looking ahead, I cannot see a positive future, but in looking back, that has been the case before. In time, that plan will come into light, just waiting for it in uncertain times is the hardest part.

Pacing
In other news, I'm doing well with the DPS system. Last week, both units alarmed low battery one day after the other, so we're doing well on keeping them even. Last Friday, I sent one unit in to have its output increased, it was returned today. Dad hooked me up to it before supper, going directly from one unit to the other.

It definitely has an increased jolt, and I like the breath I was taking. It was much fuller, larger, and more like I expected. For a few minutes, I started to get lite-headed, but since we were eating, I didn't want to interrupt to check my O2. After about three hours on the increased jolt unit, six hours pacing, I went back on the vent.

Yes, the vent is completely different than the DPS, but I was well aware of how much less air I was getting. I will give a few days testing before I send in the smaller jolt unit to be changed, but I am impressed with the quality of breathing. God allowed me to experience this new way of breathing and has allowed it to go very well, maybe it's more of the future He has for me than I know.

Saturday, January 29, 2011

January Notes

Notes, comments, musings, take your pick, they would all work equally well. I don't have anything particular this evening to discuss, just general items from this month that is about to end.

A couple weeks ago, this cartoon was mentioned in one of my group memberships, the Society for Barefoot Living. I thought it was funny, and likely a phrase I would have used as a youngster. As you know, I believe all kids should go barefoot at pretty well all times, but I doubt the excuse would go very far with most parents.

The good news, to me, is that activities like barefoot running are becoming more popular, and a few podiatrists are realizing the benefits of going without footwear. Along with the recent barefoot book, at least society is beginning to go the right way on one issue.

Education
At the beginning of this, I started my fourth class at University of Phoenix, Java Programming 2. Every class I take at UoP, I become more thankful that I did not start my education in this style. I'm certain every school is different, but these classes have generally been very difficult. In part, due to the fact you can't simply raise your hand, or mouth stick in my case, and get direct one-on-one attention from the instructor. My current class particularly, the professor does not seem interested in the students and is available for very few hours.

Again, I'm very thankful for the opportunity I had to take classes at Simpson College, in a regular classroom environment. After nearly three years there, I became very familiar with the school's requirements, instructors, and everything else associated with school. Unfortunately, UoP basically took none of my credits, so I am forced to retake many classes, such as Java 2. I learned a few months ago that University of Phoenix is a for profit school, and it is rather obvious. The most I hear about is getting tuition paid, very little concern is voiced for how I'm doing academically. Fortunately, since I've only had repeat classes and by God's grace, I'm doing well academically.

Pacing
It has now been over two months since I received the Diaphragmatic Pacemaking System. Generally, I would say my progress with the system is going well. A few weeks ago, I was introduced to a fellow long-time quad, 30 years post, who has been on a pacemaker his entire injury. He suggested to take it slower than I had been and increase gradually. Listening to his advice, I've been going two weeks at a set time for two or so sessions a day and increasing by 30 minutes after that time. Since doing this routine, I haven't had the shortness of breath issues I was getting.

In a few days, friend Bill from Florida is scheduled to get his DPS implant. We're nearing two years since he and I were part of the research group, so I'm glad to see he's finally getting it. My primary dislike at this point is speech quality. While breathing in, I can't speak; therefore, I have to pause every four seconds at my current rate. I sound like I went back to 2nd grade, before I started using the speaking valve, and sound very much like a 'vent user.' Perhaps this will improve as I become more accustomed to it, but it will always require a pause to inhale.

As is the norm in this life I've been given, I know every day, or hour, is different from the next. We'll see next time what is going on or may be coming around the bend.

Wednesday, January 19, 2011

People

If I looked through my posts, there's probably a similar topic, but I feel it can be brought up again.

In the past year or so, I've had relatives that, let's say, aren't exactly getting along. For the past couple months, my family, and others, have been trying to help wherever we can. Unfortunately, situations are not improving, despite trying to help.

On occasion, I reflect on how things would be if I had full use of my body. In times like these, I believe I would be helping as well. I see myself playing taxi whenever possible and lending a hand as well. However, that's thinking from my current perspective, with my present life's experiences. In reality, I don't know where I would be working, living, or anything of the sort. With my knowledge of this life, I have not been perfect, by any means.

Just over a year ago, when I actually started this blog, I wanted too very much be done with this life. I allowed temptation and incorrect thinking to take over my mind. I went as far as contacting doctors and lawyers to work on getting my trach, my only source of breathing at that time, removed. Plans were drawn up and I was very happy to see an end to life in site.

Fortunately, the Lord brought me back to perspective, to look at the life He has given me, and why it should continue. In the year since, this has been shown again and again, along with brief thoughts about why did I stop. Now, being on the outside and looking in, I know both sides of the fence, how thinking can get clouded into wrong directions seeming right.

Tomorrow will be the 20th day of 2011; with a busy and topsy-turvey year thus far, I wonder what is in store for the next 11 months.

Saturday, January 1, 2011

Expectations

Today is the start of 2011, for many it's a start for new goals and looking toward new expectations. A few days ago, I posted my thoughts for 2011, but I'm consistently reminded how much I rely on others.

Last night was New Year's Eve, and my parents and I had a few friends over to help celebrate. I had my assistant get me into my chair shortly before she left as to save time later on and have one less lift for dad. As always, I stayed barefoot when I got up as it's my preference and goes along with the multitude of studies I've done, groups I belong to, and various people I've spoken with on the subject. Unfortunately, my parents don't care about any of these things or are willing to take the time to listen.

Therefore, I was forced to have footwear put on due to my parent's belief that "it just looks weird." So, as our guests started arriving, I was being made to don shoes and socks. Just having socks is a very cheap cover-up in my opinion, and trying to satisfy some unknown rule that one can't go barefoot inside in the winter.

Through all these years of being a quad, I'm grateful for all my parents have done and, as I've stated before, I would like to be able to help more. It's unfortunate that situations like these arise then, and too frequently. Even though I was brought up to be an adult as independent as possible, I'm not allowed to make my own decisions. Unfortunately, this seems to be the norm though with other quads living with their parents.

No matter your age, accomplishments, or responsibilities, you're still treated as a child. Decisions are made for you, no matter your wants or thoughts, and no real solution exists. As this year starts, I pray that similar times will decrease; unfortunately, history does not show that being likely.