Sunday, December 29, 2019

Christmas Week Gatherings

With Christmas, it often means getting together with extended family that you don't get to see. I had two parties this week with each side of the family. Dad's side was mainly just with his siblings, but mom's side was with everyone.

Part of family gatherings is talking and getting caught up on the last year. This is where I can sometimes feel awkward at social settings. First, I have a tendency to "graze" conversations in crowds. I don't concentrate on one and instead hear several around me and add to each one at different points.

Second, I'm not always sure what to talk about or have anything to add. Yes, I blog every week and generally find something to write about, but it's a different setting. Most of my cousins are married and have kids. Their conversations are mainly related to family activities and work. I'm a bachelor that frequently spends all day in bed watching YouTube. It can be hard to relate sometimes.

However, I'm glad that I'm able to see my family and hear what everybody has been doing. With the way the quad life was going a few months ago, I wondered if I would be in a nursing home by now. Now that I'm down to just grandmothers, it may not be many years until full family functions completely stop.

Looking back on 2019, it has been an interesting. With losing a primary nurse, a tooth, then my grandfather's passing, it was a challenge. Relying on God though, I'm thankful He has brought me through to this point. I know the year ahead will be troubling in the political world and likely Christian tolerance as well. If I get to participate in another Christmas next year, they could make for good talking points.

Have a great new year and remember to give thanks for each day, and year, God has blessed us to have!

Sunday, December 22, 2019

Christmas Crunch Time

Sometimes in life, it seems you just keep getting behind and nothing moves forward. This week has been one of those times, and it isn't slowing down.

In early December, I agreed to preach for the final church service of the year on December 29. I didn't have a message prepared, but thought I had a fairly quiet month and could do it. Now with a week to go, I have a sermon written out, but no notes, PowerPoint prompts, or familiarity with what I'm saying.

Since 2007, I have also done a yearly review type of Christmas letter. As of this moment, it's only partially started, let alone finished. Part of this year has included funding trouble with my day assistants. Everything is in place, but hours that were worked in October have yet to be paid to some of my caregivers.

My mom and DHS supervisor have been trying to get it straightened out, only to meet with frustration. On Friday, I was told some of the problems should be fixed, but wait 60 days to resubmit paperwork. That means it would be four months after my caregivers worked until they were paid. Understandably, they aren't happy with this and want to look for work elsewhere. That's only October, November is still uncertain as well.

Therefore, I've started working on a letter to Iowa Medicaid in an attempt to rectify the issue. In addition, I have a church newsletter to do and an infrequent web client needs help and some research done. I'm also due to get a video out on my vlog if I stay on schedule.

Living the quad life does not mean you can't be active. Getting my mouth worked on a few weeks ago was the domino that started everything to fall. This is the first writing I've done flat since then and will likely not be the last.

No matter what gets finished when, I'm looking forward to another Christmas. The creator of the universe came as a humble baby born in a manger. This true meaning of the season can easily be forgotten in the busyness around us, but needs to be ahead of everything. Take time to pause this week and have a Merry Christmas!

Sunday, December 15, 2019

All I Want for Christmas

Six months ago, in late June, I had a tooth removed due to it absorbing itself. Since then, I've been dealing with a gap in the front of my lower jaw. It took time to get used to using my mouth stick again, but I have been making due.

This past Monday, I had another dentist appointment to finally get an implant to replace the tooth, or so I thought. My regular day nurse wasn't feeling well, so dad took off work to drive me the 1.5 hours to Iowa City. After we finally arrived and I was called back to the office, the staff realized I use a wheelchair and would not be transferring to their seat.

Apparently only one room is equipped with a chair that can move, so it took another 20 minutes to wait for that space to be available. During this wait, I realized I wouldn't be getting my prosthetic tooth, just an anchor for it.

As far as my feeling is concerned, my entire body is my head. That means any type of touch, or pain, is enhanced more that most people. I think the dentist got slightly annoyed at my request for plenty of Novacain, but my mouth is something I feel very well. After over 30 minutes of drilling into my jaw bone, I had a new metal anchor embedded in the gap.

Leaving the dentist is always a challenge though with not being able to feel my numbed chin. I thankfully succeeded to not hit anything and get back in the van. However, dad and I learned it snowed while we were inside and on the way home encountered several vehicles in the ditch. The road was fine for us, but I'm thankful he was able to take the time to bring me.

This week has once again been slowly getting back into using my stick. My list of tasks to complete keeps growing while I sit and watch YouTube, but it is improving. Now, in another three months, I should finally get my tooth replaced. I'm looking forward to being able to use my entire mouth again.

The quad life has challenges, but I'm glad to have access to funding for dentistry and its benefits. I'm also thankful God has allowed me to continue to work, even at a slower pace.

Sunday, December 8, 2019

To Stay or to Stop?

Early this year, I added a new venture, or challenge, to do a video blog (or vlog). I didn't have any real plans or goals for it, just another way to reach out to people. My daily activities are very routine and would not have any interest to anyone for very long. Therefore, I made videos about how, and why, I do regular activities.

I started with 0 subscribers and 1-2 old videos. As of today, I'm up to 212 subscribers and 23 videos. It's a very small number, but without any advertising and only two new videos a month, I think it's a good start. I don't want to have large numbers of followers anyway, but it has been a fun venture. Some viewers have become regular commenters that I'm starting to wonder their thoughts each week. Others have said they have spinal cord injuries and have been encouraged to try to do more after watching me.

Unfortunately, it seems all good things must come to an end. This fall, YouTube was found guilty of targeting videos, and having content, from children under 13. The Children's Online Privacy and Protection Act (COPPA) outlaws tracking information from this age group. As a result, YouTube (which is owned by Google) have to change the way they handle videos.

However, instead of handling the issue on their own, the responsibility was shifted to content creators, the people (like me) who make and publish videos. Every video must be marked as either targeted toward children, or not targeted toward children. There isn't a maybe, it's yes or no. If the video is marked incorrectly and the video is flagged by either YouTube or the Federal Trade Commission (FTC), then the video owner can be fined over $42,000 per video.

I have two channels, one showing trains and the one mentioned earlier. Both channels combined have over 160 videos that I had to mark. The vast majority of my content isn't specifically targeted toward children, but I know some kids like to do things like watch trains and may come to my channel. I also have used some of my quad life videos in grade schools to help show how I do tasks.

As one person said, this ruling almost makes it so that anything family friendly can't exist. Some people I regular watch are closing down their videos at least temporarily until more direction is given. The rules start to apply January 1 and I'm considering stopping any new videos for a while as well. The FTC is allowing public input until December 9, but I don't see many changes coming soon.

Living this unique quad life God has given me is interesting and I'm glad to help others. When that ability is threatened though, it makes sharing more difficult. I will wait to see what comes the next few weeks and months and hopefully respond correctly.

Sunday, December 1, 2019

What Day is It?

Living the quad life can get challenging at times. Weeks such as this last one emphasize it even further and add complications for those around me.

Last week, I posted about my grandfather getting into an accident and he was at the end of his life in hospice. It is a situation that many families have, or will, experienced. However, added challenge comes with my parents also taking care of me.

The morning after the accident, grandpa was in the hospital in Des Moines when my aunt called that dad and his siblings needed to to the hospital quickly. That same day, my day nurse called off sick and left me with only my parents for the day. While mom tried calling anyone that could possibly stay with me, dad got ready for an emergency trip to the city. My other day assistant agreed to come, but would have to finish what she was doing and drive half-an-hour to come. Therefore, dad had to leave on his own and mom find another way to get there. Since it was uncertain how long my parents would be gone, we also had to find help when the day person left.

Over the weekend, the scenario was similar with dad and mom coming and going, helping me, and all of us trying to spend some time with grandpa. On Monday, his condition worsened and both parents, with dad's siblings, went to be around grandpa. That is, until my day caregiver left and mom had to return home again. Wednesday included funeral planning and work at grandma's house with dad's entire family. Once again though, my parents had to leave the rest of the family early and also stay up with me overnight due to no night nurse. With lack of sleep and schedule changes, dad has frequently been wondering what do it was and what was happening when.

It's hard watching my parents try to help other family members in times of need, but unable to do as much as they would like in order to care for me. Also just laying in bed, unable to help my family, doesn't feel right either.

Friday evening was funeral visitation. My grandparents own a small grain elevator and know a lot of people. For over three hours straight, people I didn't know came up to offer their condolences. However, the majority weren't familiar with me living the quad life. A hand would be thrust in my direction expecting to be grasped for a shake or hug. The hand's owner would then usually notice my arms are strapped down and the awkwardness of how to shake, or pat, hands follows. My voice also got drowned out easily amidst everyone else talking in the crowded room.

At yesterday's funeral, I was thankful to be able to deliver part of the message and speak briefly about grandpa. Several people expressed appreciation afterwords that they enjoyed what I said and how it was presented.

Weeks like these show more awareness about people with significant disabilities is needed. Despite the challenges, I'm thankful for what my parents and I were able to do. Now with both of my grandfathers gone, funerals are becoming more familiar. It is part of living in a fallen world and will occur more until my own time comes.