These past two weeks, I’ve been having thoughts on my feet and stuff.
- My feet are a pain. And because of that, I am in pain. It’s a non-stop hard-to-be-distracted-from kind of pain. My mom asked me what number yesterday. Because that’s what my mom does. I said 5 to 7. I’m waiting to see my orthopedic doctor in about a week.
- Pain makes me exhausted. It’s hard to hold my head up when I’m exhausted. When I’m in pain.
- Here’s the thing. I don’t stand, not even to transfer to/from my wheelchair anymore because it’s too painful. Ankle-foot orthotics (AFOs) never worked very well for me because of my strong uncontrolled movement – my feet fought the AFOs and eventually I said “no more.” So, now my feet, are misshapen, aching, bent, etc. I don’t know what’s next for my feet.
- Okay – it just is – you get used to it – all the things I tell others and tell myself. You get used to it when you’re me. Yes, I deal with it. We deal with it. But, sometimes it really just does suck.
Other random thoughts:
- I have 140 pages written in my book.
- I went to the Legislative Update by the Minnesota Council on Disability on Monday afternoon to learn about different legislative efforts for the next session. Just because the election is over doesn’t mean there isn’t a lot of work to do during the upcoming session. It’s important to make our voices heard! Finally saw my picture with former Senator Dave Durenberger in the hallway between the Senate Office Building and the Capitol. Cool!
- I took a short break from my social media break. I had to jump on Twitter for the Project 4 Awesome fundraising live video by Hank and John Green Friday to this morning. They’re my favorite vloggers (video bloggers) and authors. Maybe next year, they’ll caption the live stream, so that people with hearing loss, who need closed captioning, can be included. I love that they’re able to raise over $1.5 million for good causes and wish that they’d also caption the livestream.
- Last Doctor Who for the season is tonight. Will recharge my DBS battery and watch my now favorite Doctor! This has been a great Doctor Who season! If you got tired of watching in the last couple of years, you should give it a go!
Social media is getting too many hours of my life, time that I could be using to read, write and get work done. Because of this, for the next couple of months I’m going to cut back my time on social media so I can focus on writing my first draft of my book and my blog.
I also need to learn more about changes to how my staffing will work with my Consumer Directed Community Supports (CDCS) waiver funding which is how I pay for support staff and other adaptive equipment costs not covered by health insurance or Medical Assistance. Minnesota Department of Human Services (DHS) is now requiring that I become my own small business to continue hiring my own support staff. Up until now, an agency had been the employer of record for my staff. There’s a lot to learn and lots of paperwork for my parents and me to wade through. I’ll still be here, but I won’t be on Facebook or Twitter as much.
Here are three reasons why I am putting some limits on my social media:
- Experience: In my book, my two main characters are on the run. They can’t exactly use social media to contact anyone. So I plan to experience what my two characters are going through, to give a better description.
- It is time to shut down: After reading An Absolutely Remarkable Thing by Hank Green (absolutely amazing book!), I have been doing some rethinking about how I use social media. Sometimes it doesn’t feel like a very healthy reality.
- I have too much other work to get done and there’s lots of other fun stuff to do. Like on Monday afternoon, I’m going to the Minnesota Council on Disability’s Legislative Forum on Disability. Being a disability rights and inclusion advocate means I need to stay informed about legislation that impacts my world.
Starting next week, I’m taking a break for at least the next several weeks, and then will be checking infrequently. You can message me through my blog and my mom will be keeping an eye on my Facebook @JustinSmithWrites page if you are trying to reach me. My mom will tag me in any of her Facebook or Twitter posts if anything cool is happening with me.
Have you ever had a social media blackout? Any tips on how to survive it? Wish there were some football (as in SOCCER) matches to go to! At least I have AFC Wimbledon to watch online and FIFA 19 to play on my PC. GOAL!
As some of you may know, I’m writing a novel that is currently 130 pages long and going. I couldn’t have written this much independently without word prediction. I am using WordQ, a software that speeds up my writing process a ton.
WordQ is a word prediction software I had tried when I was in later elementary school. Then I stopped using it because my old Windows computer was glitchy and would freeze up whenever I was using that older version of WordQ. So, for many years, I didn’t have any word prediction software. I would either type a letter at a time with my middle right finger or hope that whoever was helping me understood my voice well enough so that they could type what I was saying to speed up the process. Either way, it was a long, frustrating process. Really Long Beyond Words Frustrating.
Three years ago, when I presented at Closing the Gap, I met Fraser Shein, the president of Quillsoft, maker of WordQ. My dad and I talked to him about some of the problems I had when I first tried WordQ and Fraser set me up with an updated version to try out. This time it worked great for me!
I start typing a word and a separate popup screen shows me 5 numbered choices so that all I need to do is type the corresponding number. I usually can type most words in just a couple key strokes. Huge time saver for me! HUGE!
I use WordQ for typing anything – emails, blogposts, social media, and most importantly typing my book. It is simply brilliant! If you’re looking for word prediction software, I strongly recommend that you try it out. Check out this video of me using WordQ as I prepared for Charting the C’s presentations last spring.
By the way, you don’t need to have a disability to use WordQ. My dad is just a bad typist, and it helps speed up his typing, too! Good tech can be used by anybody, whether you have a disability or not! To learn more about WordQ, please check out the WordQ website.
Below is a screenshot of how words show up in the word selection pane.
This will probably be my last political post until next year. Or not.
In last Tuesday’s blogpost, I said I was going to vote for Minnesota Democrats Tim Walz and Peggy Flanagan, Tina Smith, Amy Klobuchar, Betty McCollum, and Ami Wazlawik. But, I want to be clear that I am not voting for Democrats because I favor a political party over another. I am voting for Democrats because they tend to support issues that matter to me. They support protecting Medicaid, disability rights, and healthcare.
So, here’s your job. Find out where your polling place is, research who is running for office, get out and VOTE. In Minnesota, you can use the Polling Place Finder to find out where to vote. For other states, check out Rock the Vote to find your voter information.
Our votes matter!
Here are some more posts about the issues that matter to me:
Why it matters
Vote! My letter to the editor
Ready to convene
Tax Cuts and Jobs Act
On the Issue of Disability Rights: Healthcare
Had a great question about how I charge my DBS stimulator last week and why I watch movies while I’m charging. So, my dad, mom, and I made a video.
Here’s the thing, it’s tricky to get the charger lined up and staying in one place next to the stimulator that’s implanted in my chest. I always have a chest strap to help me sit up in my chair and we use that in addition to the harness straps on the DBS charger to help hold it in the right place. Then, the trick, is that I, the one with uncontrolled movement, have to try to sit kind of still so that the charger stays on top of the stimulator. The only way we’ve found that works for me is to be watching a movie or tv show. My body is usually a little calmer when I’m watching something. Usually, I need to charge a 2-4 hours every week or two, depending on how well the battery charges.
This is the big week – GO VOTE!
Justin (& Mom)
p.s. Want to learn more about Deep Brain Stimulation (DBS) and why I have it?
Faith in the Midst of Bewilderment
Frequently Asked and Unasked Questions
YouTube video of me 5 months after my DBS surgery
Just a reminder – my typical weeks are why we need to protect Medicaid and make sure we have access to good, affordable healthcare!
Speech therapy on Tuesday. Communication device fell off my chair but fortunately seems to be working just fine. My speech therapist made some brilliant changes so that I can’t accidentally hit the speak bar when selecting a word-prediction choice. And, I can more easily program my own buttons now on my Quick Stuff page. Watch out world!
Also, got my thigh strap contraption repaired while I was speech appointing. It broke last week.
Appointment with my complex movement team doctors on Thursday. Trying some new Deep Brain Stimulation settings. 4.5 volts seemed to be too high and ended up making my movement even weirder so went back to 4.0 volts. In a couple weeks, dad will sneakily without my knowing switch to a 3rd new setting that turns on 2 different leads that are deep in my brain. One of the coolest things, was that my neurologist did a “software update” on my stimulator implanted in my chest and now the stimulator should last for another decade before having to be replaced. We had thought that it would need replacement after 7 years which would have been in about another 4 years. The fewer surgeries the better since I have had issues with staph infections. The grand experiment of Deep Brain Stimulation (DBS) continues.
Friday night was Dead Pool 2 night while charging my DBS. It takes about 1-2 movies a week to charge my DBS.
Upcoming surgery on November 9th to remove my lower braces – and an out-of-whack lower tooth. YAY!!!!!!!
Had an awesome end of the week when I went door-knocking for Ami Wazlawik who is running for MN State House Representative for 38B. She’s awesome! Made my dad come along and help out this time!
(P.S. I’m actually at my pre-op physical when this is being posted on my blog. The magic of scheduling blog posts on WordPress!)
The DFL candidates all are more supportive of disability rights and issues that impact my ability to choose where I live with the supports that I need to be included in my community. Social services that support people with disabilities to be able to live in their communities are critical. This means fighting for:
- Affordable healthcare and Medicaid (Medical Assistance in MN)
- Affordable, wheelchair accessible housing
- Inclusive job opportunities and education
Tim Walz has gone out of his way to come and talk to me from the first time I met him at the Organizing District and State DFL Conventions. He has made me feel that I do have a seat at the table. He supports the very services that I depend on to help me live and participate fully in my community. I am included as part of #OneMinnesota.
I also stand with Senators Amy Klobuchar and Tina Smith and Representative Betty McCollum in bringing their voices to the US Senate and House. They will help defend Medicaid which is so critical to those of us with disabilities. Cuts to Medicaid will impact me and others you may know who depend on Medicaid for support staff, medical care and equipment. They also speak up for fairness, respect, and decency for all.
My family has received countless negative attack flyers against Ami Wazlawik, who I support for State House District 38B. She is an awesome candidate who listens to people in her community and has done nothing but run a positive campaign. I’m signed up to help with door-knocking again next weekend! I know she will be there to listen to my concerns or about issues that are important to me when she’s elected to the State House. Because she is doing that now!
Issues that impact the disability community matter. Who is listening to those of us with disabilities? Who is going to fight for issues that matter to us? My vote is with Walz/Flanagan, Klobuchar, Smith, and Wazlawik.
You can learn more about the candidates and make your own choices from MPR Voter Guide or Star Tribune Election Guide.