The scary part of editing

Why did I write this book? It seemed like a good idea at the time I started writing, but now that I am editing, let us just say that there are moments when I feel like the book should be thrown into the garbage can and then the garbage can should be thrown into the center of an ocean. Or maybe just hit delete.

I like the character of my narrator and love the idea imagining what my life might be like if I didn’t have a disability and happened to be a vigilante. In my book, I can go anywhere, be anyone, do so many things that I can’t do in my real life. I can’t just hop on a plane and go to England or Paris or Egypt or Italy. In fact, I’m not able to fly anywhere right now because I don’t have a good way to bring along the equipment I need or sit in an airplane seat since there are no shoulder harnesses to help hold my body up.  And, there are places that would be cool to go to that just aren’t very accessible if you use a power wheelchair. Any travelling means lots of research to figure out if places will be accessible enough.

Also, in my story, my characters just talk effortlessly and don’t need to use a communication device. I am thankful for my communication device so I can communicate my own thoughts and ideas. It’s also fun to imagine if people could just understand my voice without it taking so long to type out everything I want to say.

Through my characters, I get to imagine a different reality.

So, back to editing. It is making me think about life.

p.s. It was actually easier to travel when I was younger because I had a seating system that could strap into a plane seat, wheelchair was less complicated to fix if it got broken,  and easier to carry me or my chair to inaccessible places. Here are some of our more memorable family vacations to Washington D.C., Florida, Yellowstone, Grand Tetons, and Toronto. I get a do-over to D.C. because that was the year I got the flu after the first day and spent the rest of the trip sick in the hotel room!

Justin, dad and brother at Santa Monica End of the Trail sign11-year old Justin with younger brother and dad, White House in backgroundJustin and dad with group of people on float raftJustin as a boy at top of board walk ramp with sandy beach and oceanJustin in front of Moose statue012375ef8a70833ae3e8b4e732d6fba202baa9f152

3…2…1 Action

Follow up to last week’s post about Google Live Transcribe app for Android. I had another doctor’s visit with my Movement Disorder Team on Thursday, so tried out Google Live Transcribe again. We made a video while waiting for the doctors to come in to the room. “Huh, you say? Not a video!” Yes, a video! My mom is the co-star for this one and dad is the camera person.

Tips for using auto-transcription apps:

  • 1 person talk at a time
  • Speak slowly and clearly
  • Have someone who does not have hearing issues also monitor the captions so they can correct things when captions are wrong

Auto-transcription is not perfect. Without someone who can hear better monitoring for accuracy, I would miss stuff. Like this time, the doctor was saying something and one of the words was “actually.” Google Live Transcribe thought he said “sexually.” This could lead to some big misunderstandings. My mom backed us all up so that I understood what he was actually saying.

Like a lot of stuff in my life and with assistive technologies, it’s a work in progress. This kind of tech will be helpful for some of us with hearing loss in some situations but not all. This works okay for me because we have just a couple of us in the room and I have someone who is reading the captions along with me to let me know when it messes up. If I’m in a college lecture, event like Disability Day at the Capitol, presentation, or meeting, then I’d prefer to have CART captioning. It’s more accurate.

Discoveries

The toes report

Met with the orthopedic specialist on Friday. Surgery in the next month or two as soon as it can be scheduled. Basically, the muscle tone and uncontrolled muscle spasms in my feet have caused my big toes to be just shy of dislocated. I have really strong muscles! And as I’ve mentioned before, it’s as if all of my muscles have their own individual brains, none of which listen to the brain in my head.

Foot xray showing bent big toe

I’m going to have surgery on both of my big toes as the doctor thought it was just a matter of time until my right toe gets as bad as my left. I’ll be in the hospital for a night or two after the surgery. The whole thing involves cutting tendons to my big toes, shaving off some bone on the knuckle parts of my toes, pins for 6-8 weeks. And then I’ll have another quick sedated surgery to remove the pins.

What else to say? It’s going to probably be a long, painful couple of months. Hopefully, it’ll be less painful once I get through it all.

Which brings me to…

Auto-captions

I’ve discovered over the past several years that my auditory neuropathy (AN) and hearing loss makes it difficult to follow conversations. CART (real-time) captions and closed-captioning helps me better understand what’s being said. For every day conversations or doctor visits, that’s not really an option.

Google Live Transcribe icon

My mom’s coworker let her know about Google Live Transcribe app for Android and we’ve been trying that out for everyday conversations. We also used it at my visit to the orthopedic specialist on Friday. It is amazing.

What do I like about it?

  • The text size can be enlarged so I can see it. I have visual tracking issues so larger text helps me read more easily.
  • The auto-captioning with Live Transcribe is pretty accurate. My mom reads along and points out when something is inaccurate. Like when the doctor said 6 to 8 weeks but Live Transcribe wrote out 66 instead. 66 weeks of pins in my toes is very different than 6 to 8 weeks.
  • Being able to read what was being said helped me fill in the gaps for when the discussion was sounding like a statick-y radio, which is what happens often with my AN.

Which brings me to…

My Book

Editing is long, hard work!

 

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

 

I am done with my first draft of my book!

Exciting week for me. The first draft of the book I’ve been working on for the last two years is finished and it’s exciting. I proved to myself that I can write a book. Not sure it’s a very good book or that anyone would want to read it. But, I can write a book.

What did I learn about writing a book?

  1. It’s hard. Being persistent and sticking with it when I couldn’t find ideas for what was next was hard.
  2. It was good for me to write on my own. I didn’t want my parents or others to read what I was writing because I wanted to prove to me that I can do this. I didn’t want other people’s ideas or feedback to influence my story for my first draft.
  3. It’s time to take a break from this story. I need some time away before going back and starting to edit.

In the meantime, I have lots of just typical life stuff to deal with:

  • Meeting new case manager/social worker today since I’ve moved over to adult social services.
  • Health stuff (stupid toe!) – Botox is scheduled for Wednesday.
  • Need to do all the paperwork to move to the new Fiscal Management Support model for Consumer Directed Community Supports waiver. I mentioned this in a previous post about how now MnDHS is requiring clients to become their own small businesses to hire and manage their support staff. Lots of paper work involved!
  • Keep writing in my blog.
  • Stay warm because it’s like 50 below Fahrenheit here in Minnesota.

What is up in my world?

Celebrate!

Hey, how awesome was last night’s Governor Walz and Lieutenant Governor Flanagan Inaugural Celebration?  Super AWESOME! Fun music, dancers, and so much excitement!

Selfie with Justin, mom and dad

Here are some of the picture highlights. Congratulations to Governor Walz and Lieutenant Governor Flanagan! I loved being a delegate for them in the caucus, organizing unit convention, and at the State DFL Convention. I loved volunteering however I could and writing blogposts in support of them and other political candidates and issues that I believe in.Justin, his parents, Lieutenant Governor Flanagan and Governor Walz

Time for #OneMinnesota where we ALL, including those of us with disabilities, have seats at the table!

 

Justin and man using wheelchair at inaugural celebration

The big toe annoyance

Justin dressed up and smiling

Update on my foot. I wasn’t able to have botox last week because I had a little cold earlier in the week so now it’s rescheduled for the end of January. When I get botox, I get nitrous oxide to help with the pain – can’t have nitrous when you’ve had a recent cold. I do have a dislocated-ish big toe and will need to figure out how to deal with that. First, we have to see if we can calm down the muscle tone with botox and then decide what’s next to fix the toe.

My red Acorn socks rock and look great with buffalo plaid for inaugural celebrations!