Invisible? Maybe

Last week I read a blog post by Ami Claxton, Ph.D. called "Social Isolation: Are People With Disabilities Invisible?" Dr. Claxton's husband, wheeler, is a fellow quadriplegic. He has a lower level injury than I do and is able to breath on his own, but deals with many of the same issues as I do. The article goes on to explain several social complications presented to families like mine. I suggest reading it first, I will wait until you return.

Welcome back, I hope you liked the post as well as I did. For the most part, I agree with Dr. Claxton's blog, but there are a few things I would change about it. First, as a C2/3 vent dependent quadriplegic, I am definitely not invisible. I use a 400 pound wheelchair with large rear wheels, am a couple feet long, and, until three years ago, use a mechanical ventilator that constantly makes noise. Any time I'm out in public, I get noticed by anyone in the vicinity. Invisibility would by highly advantageous at times, but that is not a luxury I have. Rather than invisible, I would argue more toward unknown, misunderstood, or even scared.

As I have said in previous posts, I require someone to be with me 24/7, this includes while on the rare social outing. This gives me the added challenge of always needing to cover two in case of paying for entry and feeding more than one. Most caregivers are older than me as well, so if I'm out with friends my own age, I have to also try to fit my assistant into the conversation. This can be difficult when she is near retirement age and decides to talk about her grand kids' activities or, better yet, her husband's stomach issues while having supper.

For a few years, I attended a young adults' group at my church. We generally met two Fridays a month, once for Bible study and again for a fun night. One year, we met almost exclusively at my house. It was accessible and obviously easy for me to get to, but it did get crowded quickly. It also got tiresome asking my parents to prepare for company so often, but it did work and the other attendees were very helpful in cleaning up afterward. One meeting in late November everyone started talking about what to do for our Christmas party. After a few suggestions, one person offered meeting in their parents' basement; it had a big screen TV, Wii, and plenty of room for everyone. I almost just kept my mouth shut and just figured I'd stay home, but I asked if it was perhaps a walk in basement (I do have portable ramps).

Their faces turned from glee of party planning to disappointment, it wasn't accessible. They offered ideas of carrying my chair down the steps, but knowing the full weight of my chair and fragility of it, I turned down the offer. After about a week, it was decided we would meet in the church basement. It was a fun time, but not what they had been looking forward to a few weeks earlier.

Over the next few years, we primarily met at church, but I didn't make it every time. Last year, the group did area mission type work, like sorting items at the local thrift store whose sales purchase Bibles for missionaries. That kind of activity is great for a church group, but not for someone who has no use of his hands. So as to not be the proverbial talking bump on a log, I didn't attend any of last year's meetings. This year, I have been removed from the email list and don't know what they're doing or when they're meeting. Since I didn't attend or show interest last year, I understand, but it is nice to at least know what's going on.

Social isolation is an unfortunate big side effect of having a severe disability. Almost any time I'm in a group of people, I see more backs than faces. In these situations, I also don't know what to do, I am not up on a lot of current events, especially sports, and don't know what to talk about. To be social, you need to have been socialized first.

In the case of an evening event, it gets even more difficult to plan. I only have an assistant on Friday nights, and she doesn't drive my van. Therefore, I require my parents' help for any such time. Then I factor in how long I should be up in my chair and if I can participate. Therefore, I've become very used to being "friends" with my computer and hanging out in my room. It is nice to have alone time, but real friends are great to.

Fortunately, my parents have friends that we invite on occasion, and I have church activities I'm required at weekly and another a couple times a month. These are currently plenty of interaction for my taste. Maybe next year will see a change and I can get out more often.

Oops

Winter arrived this weekend with waking up Saturday morning to a temp of -3 outside. Sunday was warmer, but it snowed most of the day. The total was only a couple inches, but it still makes everything white and blinding in the sun. Officially, winter doesn't arrive for another 12 days, but the cold and snow that comes with it has already shown.

I committed one of the big mistakes in the quad life, I relied too much on others. When you have an assistant 24/7, it's easy to let them help out with daily needs. However, you still need to keep track of what's going on and be a responsible adult, that's where I messed up.

It probably doesn't come as a surprise that I take a number of prescription meds. I'm told I take a lot less than some people, but they are a part of life. Medications don't grow on trees, at least the ones I take, so they need to be ordered monthly. I have it so that I can order most of my prescriptions all at the same time, it makes them easier to keep track of and my pharmacy only has to be bugged by me once a month. Unfortunately, one got off the rotation and has to be ordered at a different time, this is the problematic one today.

Last night, my night nurse cancelled due to being ill and a replacement couldn't be found. So, my main day assistant came in for a short time to do my night cares before my parents took over. When she got my night meds, this is when she noticed it was the last of one of them. Their wasn't another bottle waiting with the others, so I only had one in my travel bag.

First thing this morning I called my pharmacy and reordered the drug and told the person that I needed it today. I asked my parents to stop by after work to see if it was ready and they were told it was out being delivered. As I write this, the pharmacy closed almost three hours ago and it hasn't arrived, so I'm assuming it isn't coming anymore. The missing med helps control muscle spasms, so it just means my arms and legs will have fun flopping around more tonight while I attempt to sleep. As long as my arm doesn't bang against my DPS plug and stop me breathing, it won't be a big issue.

I may have A LOT of experience in the quad life, but I still make mistakes. This is one I'm thankful doesn't come with major consequences, but God does like to give me wake up calls like this. I need to keep better track of things myself, and not always depend on those around me.

We shall see what the next week brings, hopefully warmer temps are part of it.

Early December

First, sorry about last week's post's lack of sense and direction. I have unfortunately been a bit under the weather for the last two weeks and didn't think about writing until the last minute. That's actually not uncommon, little to know planning, but I don't recommend it with a fuzzy head to start with. Thankfully, today has been an improvement from the last several. For the first time in many weeks I finally had a good night's sleep and had much clearer lungs today.

With it being the first work day of the month, I had to finish up billing and start new tracking for the month. I was happy to find that November was more than three times busier than October. It's a nice feeling to be productive and working rather than just sitting around waiting for something to do. So far, it looks like December should be busy as well.

The start of December also means time to think about Christmas and celebrating Christ's birth. It is fun to decorate, see houses with lights, and listen to Christmas music, but the real meaning for the celebration is quickly getting lost in the shuffle. All these things aren't bad, I currently have piano Christmas music playing on iTunes with lights in my windows and a Christmas train tree a few feet in front of me, but we need to remember the "reason for the season." Thee ministry I follow, Answers in Genesis, is currently running billboard ads saying what Christmas is. It is an area that many people need further education and I'm glad to see it working.

That is about all I have to report this week. Have a great start to a new month and stay tuned for next week!

Thanksgiving

The last Monday in November means we're just in time for Thanksgiving. Unfortunately, since last week I can't report any progress on the wounds, but there are always things to be thankful for.

It sounds like next month will have most of the night shifts covered as long as weather isn't an issue. Therefore, tomorrow should be our last late night until Christmas.

Another item is that I started on a new site project late last week. I first heard about it in August, but then the designer left her company for another job. However, the site owner went to another company and they gave me the design. It's apparent this person hasn't designed for a web site before, but it's a good project.

For the last few days I have been having trouble with stuffed up nose and needing suctioned (clearing lungs mechanically) a lot. I haven't felt bad, but have been petty tired. This evening has gone well, but I didn't get a chance to think about what to write tonight. Maybe after Thursday more will come up to talk about.

Have a happy Thanksgiving!

Caregivers

Monday seems to come quickly while Friday is late in coming. It is once again time for another installment of The Quad Life.

Following up from last week's post, the pressure sores have improved! Two separate people at different times confirmed with measurements that they have indeed improved in the past six weeks. I'm very thankful to hear this news to answered prayer. However, early Sunday morning, my night nurse informed me that a third place has now opened on my butt. At least two of them are improving at this time.

The big news this week though is about caregivers. As a vent dependent quad, they are a requirement to have 24 hours a day, seven days a week, every week of the year. Their are no caregiver holidays in the quad life either, so someone is always within ear shot if not within a few feet. For me, that means caregivers through a nursing agency, private hire, and family.

For the past several months, my family and other caregivers have been having trouble with an agency nurse. They escalated in the past few weeks to where I had to have stop coming. Since the agency has been unsuccessfully looking for a replacement for a few months, this now means we have one night a week not covered. I did not want to do this to my parents, but being scared about getting physical harm is not a way to live either. I like living in rural Iowa, but being an hour away from a metropolitan area makes finding help a challenge.

A major cough or flu has also been going around in my area and my main day caregiver has become ill with it. So, that means starting tomorrow morning, I have 24 hours without my regular caregivers. That means my parents will be missing work as they do a tag team of covering the day and be short on sleep as the night is covered. They do very well, but I'm concerned about aggravating the pressure wounds as I don't get moved as much as I usually do.

These are days I pray to be few and far between with strength given to all three of us to work through them. The night situation will be the most difficult, but I pray that a solution will be found soon. This past week has seen answered prayers, maybe this week will as well.

Videos

For the past several weeks, I have been working on a video from my point of view. I had a camera strapped to my head and tried to show things I normally do. It didn't turn out exactly as I had it planned, but it still did pretty well.

When I started it, the weather was still warm, so I had my normal attire of t-shirt and shorts. Of course I ran out of time to do everything in one day, so I needed to record multiple times. Between camera trouble and busyness of life, it ended up taking over a month to compile. I finally finished the last segment Saturday, meaning I was outside in summer outfit in November. It did feel pretty nice, but it was only in the upper 50's. While I was going about my business of how I get in the van, a guy drove by on a lawnmower wearing a coat and stocking cap. I have yet to get any comments from someone that noticed, but I'm sure it will come.

This was also the first time I used my camera and associated software to do anything other than shorten and upload a video. It was a bit of a learning curve, but not bad. Unfortunately, I noticed after I uploaded it that it had cut off the bottom of the shot where my hands and legs were. I specifically retook segments because they weren't showing my view with hands and knees in peripheral vision. So, I figured out how to adjust it and uploaded again. The final product does give a good overview, but things could still be better.

Saturday was also a video day for demonstrating stick skills on camera. Some people have asked me how I do things with a mouth stick, so I finally will be able to show them. The video didn't get nearly as close in as we thought it was, but it still shows pretty well. After I put it together, it came to 20 minutes long! I started uploading to YouTube, but it was estimated to take ten hours to get online. I have a doctor's appointment tomorrow, so I think I will have the video upload while I'm out.

These productions were fun projects, but not ones I care to repeat. As I've heard other people say, I don't like hearing my own voice. I also really noticed the breaks I take while pacing and the shoulder shrugging on the stick video. It's a major drawback of this breathing system, one I'm still struggling to come to terms with.

Tomorrow's appointment will be to check progress on my pressure sores. My assistants think they're improving, so we'll see what the doctors say. Hopefully by next week I can report an improvement in that area.

Entertainment

It's nearing the end of Monday, the best part of the day for me. The end of the day means I can do what I want without having a nurse in the same room with me and can be somewhat alone. However, my parents are in the next room, and I'm writing this for the world to see, not exactly all that private.

The entertainment industry does not get a lot of funding from me. I have absolutely no interest in sports, I can't remember the last time I was in a movie theater, and once I start a computer game, I tend to stick with it for a while. One example is a game called Starcraft, by Blizzard Entertainment. My best friend and I started playing it when we were in high school. Thirteen years later when Starcraft 2 came out, we were still playing it. We had both graduated from high school, gone through and graduated from college, started careers, and he had gotten married and lived in four different states. In late 2012 though, our interest shifted to a new game.

Harvesting canola in Farming Simulator

Farming Simulator 2013 is just what the name implies, a game that simulates farming. You plant and harvest crops, take care of livestock, buy and sell equipment, and watch your bank account grow, and shrink. In the eleven months I have had this game, I have easily spent nearly 1000 hours playing it. I do not see it lasting 14 years like Starcraft, but it is a good hiatus.

This past Saturday, the night nurse called in sick and a replacement could not be found. Therefore, I stayed awake by playing Farming Simulator and helped mom stay up. It's a game that can go as fast or as slow as you want, just change the speed of time with a key stroke. In fact, I have it running as I type this evening's entry. During the next two days though, I won't be farming, I have church activities for both nights. When Thursday night comes though, I'll be back to my crops again.

Living in rural Iowa, as the son of two people that grew up on farms, and having several family members in the farming industry, you get to know the job as a farmer well. I don't know that I would have been a farmer if I wasn't in the quad life, but it's possible. At least through the role of simulation, I can preteen what it's like for those around me.

Posting weekly is starting to become a habit, but I did almost forget tonight. We shall see what the next week's plans have in store.