Stick Trouble that Gets Sticky

I have used a mouth stick to interact with the world for more than 40 years. It is what I learned to use when I was originally injured and increased my skills as the years progressed. 

I primarily just use a straight wand that is 18" long and meets most of my needs. However, I have an abundance of other sticks and various sizes and functions. Some are short, some are long, and others can extend and go in between. Further varieties have capabilities of picking up items, holding a writing utensil, or allowing me to interact with a touchscreen. In some ways, you can say I have sticks coming out of my ears!

No matter the variety, they all have one thing in common and that is bite sleeves on the end. They are simple rubber cushions that I use to clamp onto and not have to bite plastic. Unfortunately, this is now become a major source of problems.

For over a year, I have had a hard time finding more sleeves to order. The only thing I could find have square ends that are not comfortable on my tongue. Digging through my collection of sticks, my caregiver found that one of them had brand new ends that had never been opened. The old style cushions are much more durable than those available today and the three sets that she found lasted an entire year. Unfortunately, I used them as long as I could but, had to switch last weekend. The only thing that was available were square tipped ends.

Within the first two days of using them, my tongue and entire mouth were sore by the end of the day. I was hoping it would improve, but it did not changed as the week progressed. I found myself to be forced to use more voice control in order to save extra pain. In fact, this week's entry has been primarily made by using voice control and much editing.

The problem with this method, is that my mouth quickly dries out and I need to get more drinks. I don't always have some one available that can give me a drink, so it replaces one problem with another. I know that various technologies are available for computer control, but I do more that just computer work with my stick. Reading, playing card games, and basically anything else I want to do require stick use.

I will continue to search and possibly come up with a method of making my own. However, that last option is currently completely unknown how it would be possible. I'm aware that I've been living the quad life for many decades and maybe do things a bit differently. Even with that, I do know younger quadriplegics use sticks as well. 

It looks like that one way or another I will be learning something new; either more voice control or how to make my pads. I will wait to see which one it is. 

Another Off Week

Almost every week, I write these entries on Friday or Saturday and schedule them to release Sunday afternoon. I  try to make it sound like it was written on Sunday, but primarily so it makes sense when you're reading it. I did the regular routine last Saturday, scheduled the release date, and didn't think of it again.

Friday, I received an email from a friend who said she missed my blog post and hoped I was okay. I promptly came here to look, and saw I scheduled last week's entry to post on June 11 instead of the 4th. I corrected the date, but it was an indicator of how the week went.

Monday morning, I received confirmation that I do have another infection. I started on another antibiotic that night, but with a stronger dose than what I had a few weeks ago. That restarted my routine of trying to take more probiotics to counteract negative aspects of the medication.

On Friday, June 9, I visited with a new doctor at a new location west of Des Moines. My caregiver and I looked at the directions, but briefly got turned in the wrong direction after picking up lunch. Eventually, everything worked and I saw the doctor for a regular annual visit. However, it took about four hours to have a five minute conversation. That's fairly typical with my specialists, but it feels like a waste to the day.

Yesterday, I ended up in Des Moines again, but in the ER for four hours. The second round of antibiotics isn't going over well with my digestive system. I went to check on some concerns my night nurse had, but thankfully it wasn't an issue. However, I now have more things to drink in order to get everything moving again.

Tonight, I'm scheduled to preach for another congregation. Thankfully, it's a recycled sermon that is familiar, but I pray no other problems arise to hinder being able to serve. Some days, or weeks, the quad life gets to be challenging and the last few have been along that direction. I'm thankful to remember to look to God in all situations and pray that everything goes well.

Talkative Week

My first week out of hibernation is complete, and it was a busy start. Sunday was preaching, and every day except Monday and Wednesday had something scheduled.

Tuesday was a doctor's appointment to see how my pressure sores are doing. I have heard good reports from my caregivers, and the doctor agreed that it's going in the right direction. Instead of seeing him twice this summer, I don't need to return until September. It was good to hear his confirmation of what I have heard and one less appointment this year.

Friday was my first school visit, but not the regular disability awareness talk. I was asked last summer to speak at a school's chapel service, and scheduled it for March. Christian schools generally start one, or more, days a week with a special time of learning from God's Word. An outside speaker may came in, or it could be covered by an instructor or a class. I don't get asked to give chapel presentations very often and was thankful for the opportunity.

The challenge with this school was that all grades are present, from Pre-K through eighth grade. Therefore, I had an age range of around 5-14 to keep interested and try to teach. I have spoken at this school before, but it is still an interesting.

I taught on knowledge and wisdom from a few verses. For part of it, I demonstrated "running" fast and coming to a quick stop. Knowing the rule not to run in the house is knowledge, wisdom comes when breaking the rule, getting hurt, and understanding why it exists. However, without the solid foundation of the Bible from God who cannot lie, we can't truly know anything.

Both Sunday and Friday's messages seemed to go well. I didn't fall asleep at my own message and students seemed to learn. This week, I'm scheduled to be at another grade school and give my regular presentation on the quad life. I always look forward to getting to work with kids again and thankful for the opportunity. Now if the weather would improve for spring, it would be even better!

Editing Again, but Slowly

According to my computer, I started working on writing my autobiography in November 2018. It feels like I started before that, but it maybe just seems longer than I think. At any case, I have been working on writing and editing it for a few years. Early last month, after shopping for self-publishers, I sent my work to a publisher. This week, she gave it back with the first round of edits.

When I started college, I was told I would need to learn to use voice dictation software because my papers would be too long for me to write by stick. I think I attempted using the software for about two weeks before admitting defeat and using my trusty mouth stick. Even though it spanned a few years, I was thankful to be able to write all 300+ pages of this book with my regular tools. Unfortunately, I can see already that editing will be a harder process.

I can use a keyboard for several hours in various positions without having much of an issue. However, operating the mouse takes more pressure and precise movement. These actions make my mouth sore quickly and I avoid as much mouse work as I can. I have learned several keyboard shortcuts for my regular tasks, but it's not always an option. Book editing is one of those times keyboard alone doesn't work.

The copy I received used something called track changes. Word documents any changes someone made to a document and then another person can accept, reject, the adjustments or make more. Unfortunately, every change requires at least one mouse click and often more. Since receiving the edited version three days ago, I have covered 28 of 311 pages and my mouth was telling me to slow down after the first day.

Living the quad life, I have many items I need assistance with. The little I can do independently, like run a computer, I make sure to do on my own. Now I'm debating to take a very slow process to do everything on my own, delaying publication, or ask for some help. I will likely take another week or two decide on some type of hybrid compromise. It's my own fault for not asking for an alternative editing option, but I have no idea what that would be.

I'm used to doing tasks slower than my peers, so this won't be any different. I do look forward to completing this project though, however long it may take.

Self-Imposed Labor

We have reached September and Labor Day weekend in the U.S. Throughout August, I was looking forward to having a calm month ahead. However, my head wouldn't shut off one night and now I have another full month, even though my calendar is quite sparse.

September is National Spinal Cord Injury awareness month. In 2019, following the example of a friend, I posted something SCI related on Facebook every day of the month. With 30 items, I covered a lot of the aspects of living the quad life and I received several compliments on the project. At some hour of the night around August 20, I got the idea to do the same this year on my YouTube channel.

The next day, I found the list of items I covered in 2019 and adjusted a few to better fit video format. This was all great, but I now committed myself to recording, editing, and uploading 30 videos. I have been struggling to get two out per week the past few months and this would be a lot more work.

Unlike Facebook, I can at least make videos ahead of time and schedule them to be released on certain days and times with YouTube. If I was going to make it happen, I determined I needed to have at least one week's worth of videos finished before September 1. By August 30, I had completed and uploaded eight videos. They weren't all sequential, but I had the first few days covered at least.

Now, I am trying to make at least one video per day and have done two a few times. As of this writing, I have now uploaded 12 videos and hope to get another one finished before this blog goes live. I enjoy helping people learn and it has been fun getting to teach about the life I've been given. The few videos that have gone out to the public have already received good comments and more views than I normally get.

Hopefully, I can finish this project without getting overwhelmed. Maybe by the time the middle of the month arrives I will be able to slow down. However, I wouldn't count on it knowing me.

Job Prospect

Sometimes, I look around and dream of possibilities of how life could be different. Last week, I had a few minutes to fill between other activities and started looking around. I wish I hadn't, but the results did get my mind spinning in realms of "what if."

While on Facebook, I saw an advertisement from Answers in Genesis talking about job openings. If I ever was able to work anywhere again, this would be high on the list of organizations I would consider. I scrolled through the list of 102 openings and browsed the headlines. Most of them were seasonal needs for summer, but some were permanent positions in various departments. One opening near the end of the list caught my eye.

The title said it was an entry position for a content manager for the company's web presence. Clicking on it for further detail, it was like I was reading my own qualifications. Required education was a 2-year degree, which I have, and experience with HTML and CSS. The person would work with a content management system to get videos, pictures, and text on websites, social media, and various electronic platforms. In short, the exact thing I do for my clients already. However, the position is for full-time work, including some weekends, in northern Kentucky.

It has been nearly 20 years since I last worked full-time in a regular office environment. With the trouble I have with pressure sores and other issues, I know I can't physically work that much anymore. Also, due to using my dad's employer's insurance as well as Medicaid through Iowa, I am extremely limited in what I can earn. For example, if I lost my caregiver funding through Medicaid, that cost alone would be around $200 per day ($6,000/month).

I would love the opportunity to allow my parents to be free from having to provide so much for me, and be less reliant on government support. Unfortunately, the system basically requires me to stay just as I am with doing very little paid work. 

In any case, it's sometimes fun to dream and wonder. God has given me the quad life right where I am and I will serve Him wherever He leads me.

Work a Month in a Week

Have you ever neglected to thank God for some of the gifts He has given? It's easy to do when everything is going well, but I try to remember to consider the blessings I have and give thanks. One of those things I can easily forget is work. Most months, I have about 3-4 hours of paid work for web development with the majority of the time from one client. It isn't much, but it is at least something and I've been trying to remember to be thankful for it as I calculate my time each month.

Sometimes, as you give adoration for what you have, more is given. For a couple of my clients, I have been urging them to make some major improvements for a few years. Two finally agreed to make the big updates I've been encouraging, but both came this week. In addition to that, I also interviewed to start with another volunteer site. Therefore, I have worked more this past week than I typically do in a month.

I would much rather be doing something productive than have an idle stick. However, my schedule of sitting upright for 45 minutes 3-4 times a day hasn't changed. It has been a balance of prioritizing time to what project, but everything has gone well. One site is nearing completion and the other two won't take much longer. I am very thankful for the increase in responsibility, but would need to adjust other projects if it happened for a longer period.

With trouble having my day caregiver hours covered, I've been thankful nights have mostly been filled. Unfortunately, my main night nurse missed Thursday evening due to medical concerns. Now, he will be off for up to two weeks. My other night assistant normally just does 1-2 nights a week with me and has other clients. With February already scheduled, I don't know how many more she could do for me.

Living the quad life can mean circumstances change quickly. Just when I thought my parents could start getting a break from always helping me, it will go back to needing further assistance again. As the Bible says in a number of places, "It came to pass." That means the good and the bad times will not be permanent. I pray this week goes well with no more major changes, but God is in control whatever comes.

Too Much or Neglected

With mostly everything open this summer, many families have been participating in as many activities as possible. I have been hearing great reports about my pressure wounds and they are nearly closed. Therefore, I have also been getting outside and enjoying summer activities. However, I may have done too much.

A couple weeks ago, dad and I went to Railroad Days in Galesburg, IL. It is always the fourth Saturday in June, but that usually coincided with the week I was returning from camp. Since that didn't happen this year, we took a full day to enjoy our first visit to the festivities. Galesburg is a three-hour drive one way, but the two of us got home about 12 hours after we left.

When dad went to change the bandages on my skin sores, one of them had rolled up in a ball. It likely happened when I got dressed in the morning and I sat on it all day. I had my night nurse get me up early and I forgot to have him check. As a result, the area regressed to where it had been a few months ago.

Last week Sunday, I preached in the morning. That evening, I went out to my uncle's to watch his fireworks' display. Monday evening, I was also up in my chair for several hours with friends celebrating Independence Day. I apparently didn't tilt enough as the area that was irritated at Railroad Days also got deeper.

On Tuesday, my caregiver added more air to my seat cushion since it felt a little low. That should hopefully help, but I still need to be cautious. July is pretty open for me and I had hoped to do a few outings I have been post-ponging. Now, I will delay them another year and likely stay down as much as possible to prepare for a busy August.

Such is the story of the quad life. I let my guard down too much and now pay the consequences. Thankfully, God has shown me over the years how to stay active in any situation. I may not get to do some items in my plans, but I can still serve plans ahead that are a far greater purpose.

More Ups and Downs

Earlier this month, I saw my dermatologist to check on my skin sores. One are still looks basically healed, but the other two are pretty stagnant since my last visit a few months ago. I did miss a few weeks of biking due to caregiver's illness, but the doctor also suggested a change in my sit schedule.

For at least the last three to four years, I have been sitting in bed for 45 minutes and then lay flat for three to four hours before sitting again. It's a schedule I made on my own, but I thought laying flat longer would be the most helpful. Now, my doctor said to try sitting after only two hours of flat time and getting more movement.

Most people get familiar to a set routine, and I'm definitely one of them. Trying to do what I consider a major change has been fun. Instead of getting four sit times during the day, I now get five. Therefore, I have basically increased my day by 25%. I have found myself doing tasks while sitting that I usually did flat, or a combination of both.

I was scheduled to preach next week and have been preparing my sermon, but the service has now been cancelled due to the virus. Instead of looking at my notes and reviewing while laying flat, I have partially done it while sitting. My head says I should be doing something more active while upright, but I am still doing something productive. Work still remains pretty non-existent as well, so I see more book progress in my near future also.

Living the quad life is a careful balance between managing the mind and body. For the one, I stay active in doing activities other than zoning out to entertainment. For the other, it's a game of give and take trying not to make any one area upset.

I'm thankful for the time I've been given, in any position, and try to use it to God's glory. This sudden addition is one I think I will quickly learn to enjoy, but be careful not to over work those that help me change positions either.

Return to Normal

Normal is a very relative term that is different for every person. My normal day is very different from most people, but it is my version at last. This week felt more like a return to normal.

After completing my exam, it was a relief not trying to study every free moment. Not long ago, a new web client approached me about moving their site to a new location and making some updates. It felt good to make progress on the site and get back to doing some actual web work.

On Friday, I had my first grade school visit for the year. Doing my regular presentation and hearing the kids' questions and reactions was somehow calming. It has been nearly a year since my last school, but my presentation is almost permanently in my memory and it doesn't take much review. However, the week was also a bit abnormal as well.

My parents were able to go on their annual fall trip and returned Friday evening after ten days away. Watering flowers and taking care of the house isn't my regular routine, but it developed fairly quickly. Whenever I get the house to myself it feels like when I lived on my own in Des Moines. Getting groceries and planning meals is the normal thing to do for most people and one I enjoy for short periods. Now that they have returned, everything seems back to the regular routine.

The bad part about a return to normalcy is that I have trouble getting out of it. There are times when a change can be good and break up daily routines and may be helpful to someone else. The remainder of September and most of October look to be pretty busy in going to schools and web work, so I don't think it will be an issue.

For nearly the past year, my church has been looking at merging with two other congregations in town. The final vote whether to merge or not is scheduled for tomorrow evening. My prayer is that everything will stay as we are familiar with, but it may be getting used to a new normal as well. The quad life continues on and I will see what God has in store for another week.

Outreach Burn

This past weekend was perfect weather in Iowa with sunny skies and temps topping out in the upper 60's and low 70's. It's the kind of day that feels cool in the shade, but great in the sun. It was also a great opportunity to meet and talk with people.

Thursday through Saturday was Tulip Time in Pella. The excellent weather and several beds of tulips made for large crowds attending the Dutch festival. On Thursday and Friday I volunteered a few hours at a new gospel outreach stand. It wasn't nearly as busy as being at the fair last summer, but there were still plenty of opportunities to share.

The first day was a short shift to kind of get a feel for how the stand worked and how I could best help. My assistant and I mainly handed out gospel tracts and little information sheets as people walked past. Several kids were thrilled to receive a million dollar bill and show off to their friends.

Friday was a longer stent and with my regular day help out ill, I had dad as my backup. It took a bit of training, but he was catching on to what to do by the time my shift was up. I talked with a few missionaries that were glad to see me out active. A retired couple from Missouri had just started reading through the Bible for the first time and were glad they started. Everyone I had was eager to talk and glad to see the new booth being active.

Unfortunately, I didn't watch out enough for my own needs. After Thursday, we noticed strips of red on my arms where they were exposed to the sun. On Friday and Saturday, I was glowing with sunscreen on my face, arms, and legs, but I forgot about one spot. When washing my hair Sunday morning I realized my scalp received more sun than I thought in a few spots and is now sore to touch. Living the quad life doesn't make me immune to thinning hair lines apparently.

I'm thankful that I was able to get out and I pray that the contacts that were made will have eternal benefit for everyone. This week looks to be a busy one again with doctors and, unfortunately, a hair cut that could be interesting.

Last One

It has been a busy week, but I'm finally getting a chance to post. Last week I said we learned that it would not work for me to get nursing coverage through my own insurance. One of my case workers did some further investigating and found out I'm an oddity (no laughing).

In talking with my nursing agency, they said they don't have any private insurance companies that pay for nursing for their clients. They all have state funded services or have moved to a care facility. Apparently staying with what I we currently have is the best option.

Due to this development, my parents are going to try and see if we can do another year of staying on our current plan. Hopefully we won't need to go through all the work this year required to get everything covered.

After I graduated from college in 2003, Voc Rehab hired a job developer to help me find a job. After a few months, he decided that no employer would hire me due to potential insurance costs. Therefore, I was given the number to several nursing homes and told not to look for work. Now over ten years later, it seems like insurance wants to do the same thing.

Thankfully, quadriplegics like myself aren't very common, but there are a lot of us out there. In public and in my school talks, kids and adults don't know how to work with someone like me and what we can do. I keep working to change this thinking, but it's a long uphill battle. This week though, I did get to see a result of this work.

Sunday morning, I was sitting in my regular spot before church service had started and one of the boys I work with in Cadets came up to me and wanted help finding his family. A quick scan of the crowd found them and I directed him in the correct direction. Most people would forget this account quickly, but for me it was a victory of sorts.

I've been working with this kid since late last year and in that time he has learned to see me as any other adult. In the case Sunday, as someone he can go to for help. This is a rarity with a lot of people with severe disabilities, but doesn't need to be.

Hopefully my quad life can continue to help others, but we'll see what God has in the plan for this life in 2015 and the next week.

New Mattress

In early high school, around '97-'98, I started having trouble with pressure sores. Therefore, I got an air mattress for my bed to help reduce and prevent sores. This was a three-cell mattress, head, middle, and foot, that worked pretty well.

This mattress had thousands of tiny holes that continually lost air, so it had a pump that ran continually to keep it inflated. I was very aware when the electricity went out, because I went flat quickly. In any case, I could easily sit in bed and do whatever I wanted and still have good pressure relief. With a few replacement cells, I've used the same mattress ever since high school.

Unfortunately, like a lot of my equipment, it is now no longer produced and I can't get replacement parts. A few months ago, we noticed my butt was really sinking in when I sat up. When I was flat, I resembled a hot dog in a blue bun, making it difficult to do my cares and attempt sleep. For the first time in more than a decade, it was time to get a new mattress.

The first one I received was two inches too long for my bed, so we started looking at what it would take to lengthen my bed. However, after further testing, we noticed the air mattress was not made for sitting, just laying, so it was back to the phone and supply company. The second attempt is now underneath me and working well, at least for now.

Unlike the old system, this one doesn't lose air, so the pump isn't constantly running. The new quiet in my room was nice, but has taken getting used to. The first day I had it my caregiver and I committed that it sounded we were speaking louder. The second major item is that the air continues to move while I'm sitting, or laying.

Every four minutes, the pump comes to life and adjusts the air in various places. At one point, my keyboard will be just right, a few seconds later I find it moving closer or further away and I need to adjust it. I would say it's a good change and should help with my current sores and hopefully reduce problems in the future. My keyboard is going away again, so we'll see what comes this week.

Fails

Some weeks, everything goes right, but others are just the opposite. Last week seemed to be a lot of the latter.

After over four years of work and waiting, my new chair arrived last Tuesday. Unfortunately, we should have left it in the crate. It didn't have several of the items it was supposed to, won't fit me, and a long list of problems. After a little investigation, I also found out the base was purchase in 2009 by a company in Florida. The on switch is missing, so I can't tell how many miles it has driven, but it has definitely traveled the country.

I also had a miscommunication with a client a couple weeks ago and I ended up overwriting changes they had made. Last week was spent getting the original changes online again along with the changes I made. Now we're working to get everything correct on the client's computer again so they can continue doing updates. Normally, I'm able to get updates complete for clients within one business day, but not last week.

With the catching up on the one client and still being flat a lot, I let an update request get buried in my email. It was two days later when the client reminded me of it that I finally got it online. I'm supposed to be trying to get more clients so I can help with insurance expenses, not lose current ones because of poor management. Mom also said that if I can't get on my own insurance with nursing coverage in January that I'll need to just go to Medicaid and see what we can do. That will very possibly mean a care facility. With the negative, their also was some positive.

Tuesday also had an interview with a potential new client. If they decide to go with me, it should be a fun site to work on. I also started back into Spanish after more than a year off. I've wanted to for a couple months, but finally took the initiative and did it.

Other than warm, this new week has potential to go either direction. We'll see what it brings by the next post.

CHAMP Camp 2014

Today is the official start of CHAMP Camp 2014, and I'm missing it. Due to the insurance trouble and not knowing what would be going on this week, I let my application be withdrawn. Yesterday was counselor orientation and today marks camper arrival, likely as I'm typing this. It has been fun to at least see pictures on Facebook from camp friends. After 19 years of going to camp, seven years as a camper, you would think a break would be welcome.

As a child growing up and now an adult with a severe disability, you're unfortunately not seen as an equal to your peers. During school activities, let's say sports in P.E. class, you're made to be a referee or base manager. When you're the only person in class who uses a wheelchair, this is somewhat of a safety factor, kids running for a ball could easily run into you, or be ran over, and injure themselves. Whatever the reasoning, you don't feel part of the action. For activities in a class when you're told to work together, I often had to be assigned to a group to work on a project.

Three counselors welcome a camper in 2013

I would like to say it's different as an adult, but that's unfortunately not the case. People tend to address the person I'm with instead of me, especially medical personal, and you're not thought of as an individual that contributes to society. I work to change this stereotype, but only one person can reach so many people. At CHAMP Camp, the real world is a distant memory.

Kids participate in EVERY activity, no matter what their challenges are. I remember my first year of camp, the last evening, having a squirt gun fight between the boys' and girls' cabins. Before then, I had never done anything close to it, but it just takes people that know where the water can and can't go. Parts of the chest, and especially the head, are great targets, just stay clear of the trach and electronics, like the ventilator. Being treated as a normal kid that could do everything like everybody else was a great experience. Going back as an adult is similar as my camper years.

New counselors, especially those in school in health related fields, look to me for guidance and how to do things. My fellow long-term counselors know that I help in different ways and let me do what I can. I can't do the camper's medical cares, but I can help to occupy one, or more, while another is getting something done. For the kids that have similar needs to mine, we work on how to deal with regular life, bug nurses (a.k.a. assistants or personal care attendants), or just shoot the breeze. As the camp orientation packet says, isn't it too bad the real world isn't like this?

One of my camp friends, a fellow alumni camper turned counselor, says it's his favorite week of the year. With all the memories, friends, and unique experiences, I feel pretty close to the same. Hopefully next year things will straighten out so that I can continue to make memories and help kids.

Flat, Sideways World

Trying to accommodate a body that I can't control or really feel can be a challenge, especially when dealing with major skin problems. However, it is something that comes with the quad life and must be done. A few weeks ago, I started getting a headache and very stiff muscles after sitting for a short time, so I took the clue that I need to try to get down even more.

Fortunately, last month was very slow for work, only totaling nine-hours, but I still had things to do. Laying flat on my back or on my side for a couple hours is a great opportunity to nap, but I can only do that so much. With necessity being the mother of invention, I have learned that old quads can learn new tricks.

Reading a Magazine

While laying on my side, my nurses and I have worked it so that I can read a magazine, book, or run a Kindle with a special mouth stick. I have never been much of a reader, but these last few months have seen me doing a lot. A magazine I subscribe to comes quarterly, and I used to barely finish one before the next one came. With the latest issue, I finished it well over a month before the next one comes and have started on a few books I've had for a few years but haven't touched. Learning to read at an angle took time, but I'm pretty used to it now. Maybe pressure sores are the key to finally getting me to read. Laying flat has also produced new tricks.

When on my computer, like right now, I'm usually sitting in my bed or my chair. However, I'm now also working on it while flat. I started out by just watching episodes of Macgyver and having the keyboard within reach to change episodes when one finished. That developed into adding my wireless mouse in the mix and learning how to work it while flat. I try to do as much as possible via keyboard and have learned a few more keyboard shortcuts, but it does work. Instead of just watching TV episodes or movies I can also play a few games and email people.

The only remaining problem is being able to see what I'm doing. When I'm flat, the computer screen is past my feet, so at least five feet away from my face, further away than my nearsightedness lets me read. In bed, I'm usually fine without my glasses, but they may become an addition to the laying flat routine. I've learned even if you can't move or lay in a good position, you can still do things if you really want.

Work

For most people, myself included, work is a requirement of adult life, but generally not enjoyed. Some are able to do what they love for employment, but it's unfortunately not the norm. As I posted a few weeks ago, working during the quad life is part of a balancing act between priorities.

After I graduated from college, I took the first few months to look for work and had interviews at a number of businesses. During this time, I signed up with a temp agency and shortly after was called in to work at a place in West Des Moines. After bankruptcy, an airline was restructuring how they handled employee benefits. We would take phone calls from employees, pilots in flight, mechanics, stewardesses, and get them signed up for the benefits package of their choice. Phone operation and data entry wasn't what I had in mind with a degree in Information Technology, but it was my first real job. I worked forty hours a week, or more, for a month and a half. It was a great feeling supporting myself and living a regular adult life.

A few months later I had another temp job, but this was one I found on my own. For this one, I did data entry for job counselors at a division of Iowa Workforce Development. I commuted from my apartment to downtown Des Moines and again did a forty-hour work week, generally. The work often ran out before the day did, so I had a few times where I left early. Once again though, the time ran out on the assignment and my position was complete. A few years later, it was found out that the CEO was taking out large sums of money for herself, so it ended up being liquidated and work done by a local university.

It has been over ten years since I worked those positions and I can't see how I did it. Now, if I was working a traditional job somewhere, every 45 minutes, I would have to stop and reposition in my chair for fifteen minutes. In an eight-hour day, that adds up to two hours of tilting. When I'm tilted, I can't run a computer, at least not the way I do it now, I've tried before. At the last temp job I did, job counselors would take fifteen minute smoke breaks every hour, so the time would be similar, but I wouldn't feel right getting paid to do nothing. When I did work full-time, I adjusted when I could, or for longer periods, but not so far that I couldn't work.

Back then (that makes me sound old), my body was more forgiving, so I could get away with it. Now, with chronic pressure sores, there's no way I could. Last month, all of January, I worked a total of about 26 hours. If you divide that into the 22 working days of the month, that's not much more than an hour a day, and that was a busy month. Granted though, I don't record my time as I would in an office, I only record time I'm actually working on a client's site. If I'm emailing clients, on the phone, putting together proposals, working on book work, none of that is recorded. If I did, then I may get up to a few hours per day average.

Worst of all is not doing anything, not having a reason to get up in the morning and do something productive with the life I've been given. Maybe sometime this body will improve, and work increase, to levels more toward real work. Until then, that's this week for the quad life.

Weekly Updates

In my last post, I added a link back to my web site and noticed I said that I blog weekly. That has not been the case, as you can see, so I was going to change the sentence. However, I decided instead to see if I can get closer to that frequency.

One of the bloggers I follow, and have worked with, said the best way to improve your writing is to just write. That obviously makes sense, so that is what I'll try to do. Unfortunately, finding something to write about could be the problem. Every week is pretty similar to the next for me.

During the day Monday through Friday, I mainly spend my time doing work or something to keep somewhat productive. Evenings consist of supper, playing computer games or watching something on the computer, and occasional meetings. Weekends primarily are longer versions of my evenings except with the addition of church on Sunday. Since I last wrote, that is what I've been doing. Maybe this will continue, maybe not, we shall see.

Today's item of interest is that I completed a new web site, Van Ryswyck Plumbing & Heating. The site started back in March with a meeting with the site owner, designer, and myself. It got delayed for a couple months due to scheduling conflicts with the designer and owner, but I finally got it in August. I finished the building of the site and was looking forward to completing it. Unfortunately, about a week later, the designer quit the company she worked for, leaving me with no contact in the company.

Fortunately, the owner and I were able to connect and try to get the site up on their existing domain (web address). However, that was inaccessible without becoming expensive, so it was decided to get a new URL. Today consisted of registering the new address, establishing hosting, and finally uploading the completed site. Amongst the other updates of the day, I was glad to get the project finished and the client's new site available to the public.

The next may not have as much accomplished, but I never know what to expect.

End of the Month

Today is June 30, the last day of June 2012. It means that we have officially had ten days of summer, that July is coming very soon, and in business circles, that end of the month activities are due. For my business, VMT, the last business day of the month is when I send billing out to my clients.

This activity happens every thirty days or so and is a ritual I love to get finished. However, this year, it has gone faster and faster every month. Not because I'm becoming more proficient at it, although possible, or because I'm using some new software, no, it's going faster because there is less to do. January started out the year very busy, but ever since then I have had a gradual decline in work so that hardly any existed this past month.

In some ways, I have been decreasing the work load through my own actions. A couple clients started using a Content Management System (CMS) this year. These systems don't require much, if anything, of web coding knowledge, so they are fast to update. Both clients still have me do their work, but the time needed has dropped. I have also made a custom CMS for another client that they will soon be using to do their own work. Finally, I'm too easy on some companies. When two different updates total 12 minutes, I can't see charging 30 (two 0.25 hour updates) to a non-profit. Therefore, I combined the two times into one.

To help end this cycle of declining sales, I purchased access to a marketing strategy course to get further skills in selling. The premise of this class is to five figure deals from new business, I don't expect that to happen, but the information is still relevant. One item the instructor says is to build a strong core, or home network, of people that know what you do as this tends to be a great source for week. That I completely agree with, the majority of the work I do has come through referrals from friends and those who know me due to SCI.

He also said to blog often, so that people can get to know your work skills, and to use email marketing for consistent reminders to clients. These sound good, and I've heard them before, but I guess it's down to doing everything in increasing numbers.

Therefore, it's maybe time to start a business related blog, and try to think of things to write, and keep trying to be social, and make sure people know what I do.  It is something to pray about and see where God leads me with this reinvigorated skill.

Years

In less than 48 hours, 2010 will be complete and the new year start again. This past week I completed my annual review of the year and gave brief descriptions of different activities. My friends and family enjoy it, but in some ways it's disappointing as well.

Every year, there seems to be so much more I could, and probably should, have done. I imagine many of us feel that way though. For me, it's mainly feeling like I hold myself my back. More calls or emails could have been done for possibly more business. I could have contacted more schools to give talks at, and used my funds to help those around me as well as people with limited means.

I can hear the question now, "Aren't you the guy that can't move, or even breath on his own?" Yes, that's true, but why does that matter? We've been given technology that helps persons like me overcome these problems. Therefore, not having control over your body isn't a reason to get lazy, or not push toward goals.

As we enter another year, many people make resolutions of various types. For 2011, I think my goal will be to let very few opportunities pass, and work to fully use the abilities and knowledge God has given me. Maybe the review for 2011 will be six pages instead of this year's three.