Wheels in Winter

Unfortunately, AFC Wimbledon did not win today meaning that they’re not going to the quarter finals of the FA Cup. Ahhhh…

My good news story for the day is even though we’ve had a ton of snow over the past couple weeks, downtown Minneapolis near The Local had clear sidewalks and curb cuts. It’s usually kind of nerve wracking to go downtown after lots of snow, because it’s hard to find street parking spots where we can drop my wheelchair lift. And, it can be really hard to move around if there’s a bunch of snow piled up on sidewalks and blocking curb cuts. For example, last year when I went to a concert, I got stuck trying to get back to my van because the snow was piling up. So, great job City of Minneapolis and businesses near The Local! I had no problems getting from my van to my soccer/football match on time with no drama.

Breakfast at The Local was awesome! You have to try the French Toast Bites! Justin in his wheelchair and dad crossing street

It was really nice having the Minneapolis experience this weekend, because just a week ago, was this example closer to home. Check out the push button to open the automatic door on this building. Don’t think any wheelchair can get close enough to reach that one.
Justin in wheelchair outside door with pile of snow in front of accessible push button

Other stuff coming up this week:

  • Disability Day at the Capitol is on Tuesday, 2/19/2019! I’ll be there making my voice heard for disability rights!
  • Friday is my follow up with the orthopedic ankle/foot specialist and hope to figure out what to do with my painful big toe.

Never give up – GOAL!

Last Saturday, AFC Wimbledon, a third-tier fan-owned football team, beat West Ham United, a Premier League team, in the fourth round of the FA Cup. I don’t want to alienate people who support West Ham, so I am not going to talk about the game. Instead I am going to tell a personal story about never giving up.

Five years ago, I tried deep brain stimulation (DBS). I wanted to see if it would be helpful in downplaying the jerky movements that are completely annoying and make it hard to do what I want to do. Two weeks after the second surgery, my stimulator was inflamed. I went to the emergency room right away and found out I had a staph infection. I had two choices: take everything out (stimulator in my chest with wires threading up my neck to the top of my head and then leads going to my basal ganglia deep in my brain) or keep it in for as long as possible.Justin laying in hospital bed, brother sitting in chair with game controller

I knew that I would have to put heavy duty IV antibiotics in my system, but initially wanted to take it out. I was hurting and you should never make decisions when you are in severe pain. Along with my parents and doctors, I decided to keep the DBS in as long as possible to see if it helped me more easily do the stuff I loved to do.

Flash forward three months, the infection couldn’t be managed with the antibiotics. It had traveled from my chest to my head and the DBS had to be taken out. The worst part was that it was working. I was sitting up on the side of the bed (check out the video links down below) and I could make a peace sign. You may think “big deal,” but it’s the first time I had ever been able to do these things. I could even flip people off – every 15-year old should be able to flip someone or something off occasionally.

One year later, I tried DBS again – without a surgical-site infection this time. I didn’t give up on my hopes that DBS would make my life a little easier.

Congratulations to AFC Wimbledon on making it this far in the FA Cup after losing almost all of their league games. Every Saturday, I watch them because I’m a huge fan. Many of my readers know that I’ve been dealing with a ton of leg and foot pain. Whenever I watch AFC Wimbledon, my pain is pushed to the side. My message to AFC Wimbledon – don’t give up!

You’ll find me at The Local Restaurant & Pub in Minnesota on 2/16 cheering on my favorite English Football team!

Justin watching tv in pub

Update on the foot/leg pain

No botox this week because doctor wants me to see another orthopedic ankle/foot specialist to determine what we do with my semi-dislocated-ish toe. It was the coldest day ever in Minnesota for this doctor appointment! Negative 50 Fahrenheit windchill!!

Dad putting hat on Justin who is bundled up in wheelchair

YouTube videos of me after DBS

Justin talking about DBS between the first DBS Stage 1 and Stage 2 surgeries

Justin sitting 7/20/15 – sitting 5 weeks after the second DBS surgeries

Justin sitting 5 months after DBS

Previous posts about my DBS story

Faith in the Midst of Bewilderment

Frequently Asked and Unasked Questions

 

Hello 2019

In 2019 I want to write more about the challenges in front of me to keep moving towards independent living. It’s not easy to figure all this out and I’ll share what I find out in case it helps others in their own lives or just so everyone has a better idea of what’s involved. And, of course I’ll also be blogging about political issues impacting disability rights, weird random stuff and my experiences with accessibility.

As you know, I took a break from Twitter and Facebook to work on my book, mainly. It has been a couple of weeks since I started my break. I probably wrote about the same amount in my book than if I had been on Twitter and Facebook. So, maybe social media isn’t as distracting for me as I thought. I’m okay with not being sucked into the non-stop drama of our current political reality. But, think instead of a total blackout, I’m going to just limit my time on social media – maybe 15 minutes in the morning and 15 minutes in the afternoon.

Here is what I will be focusing on over the next several months because all of these things need to be in place for me to live independently. I love my parents but like any young adult, I really would love to live in my own place in the next couple of years. So, how do I get from here to there?

My first step is that I need to get my Consumer Directed Community Supports (CDCS) Medicaid/Medical Assistance waiver figured out. This is the funding that helps pay for my support staff, adaptive equipment not covered by insurance, etc. I mentioned this in a previous post, Minnesota Department of Human Services is now requiring me to create my own small business to hire and manage my support staff. My parents and I will be meeting with several different providers over the next several weeks to decide if we’ll stay with our current provider or switch to a new one. Then I’ll need to complete all of the paperwork to become a small business and rehire all of my current staff and have them go through background checks again. The provider I choose will handle the payroll but we also need to figure out how to protect me from liability as a small business (this is more than just worker’s comp and unemployment insurance!). There’s a lot to figure out and it has to be done and in place by March in order to keep having the choice and flexibility for me to hire my own staff. This may all sound confusing. That’s because it is. Thanks very much DHS for making my life more complicated than it already was.

Along with figuring out support services, I’m also trying out new ways to continue growing as a writer. I’m going to try finding a class to take either through someplace like the Loft Literary Center, White Bear Center for the Arts or an edX online class. This could be a fun way to stay connected with other writers and improve as a writer.

And, guess what? It’s almost time for the new legislative session in MN! I’m going to try to get to more of the Disability Days at the Capitol to continue my advocacy for disability rights. Just got my tickets to the Walz-Flanagan Inaugural event at the Orpheum. I’ve heard back about wheelchair accessibility and also have asked if there would be CART captioning.

And, I have a whole lot of doctor and therapy appointments coming up this month – one or two a week. I’m getting botox on my lower leg and foot that’s been so painful on January 9th. Hoping it works.

I’m also going to keep having fun listening to music, watching AFC Wimbledon football (soccer) matches, going to concerts, and hanging out with my family. My younger brother is graduating from high school this spring so life is going to have a lot of changes this year for all of us.

Happy New Year everyone!

Too much social media

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:

  1. 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.
  2. 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.
  3. 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!

Smiling Justin sitting in wheelchair at soccer match in US Bank Stadium