Stem the tide

I’m social distancing at the moment with my family. Let’s talk about how scared I am and then what we can do to slow the tide.

How scared are you?

A bit. I think that it terrifies me that I could be one of the worst hit by COVID-19, but what you gonna do? I distinctly remember my Washington DC trip, my mom can explain what happened on the trip. And ask her thoughts on coronavirus.

MOMJustin sitting in wheelchair with communication device, mom sitting next to him

Hi, I’m mom. In 2009, we took the boys to Washington D.C. for fall break. The first day started off promising. We had a tour of the White House, scratched the President’s elevator with the footplate of Justin’s wheelchair, and explored the American History Museum. By late that afternoon, Justin had a high temp and all of the symptoms of H1N1. The next day, we started contacting our health insurance and clinic to find out what we should do if it worsened. As it was, even though it was scary, fortunately, Justin started feeling better after a couple days holed up in the hotel.

The scary thing, is that when Justin gets sick, he tends to get sicker than others. Breathing gets more difficult and coughing is a struggle. Care giving gets exhaustively harder. When Justin gets sick, which thankfully, isn’t often, he can get really low tone (kind of like dead-weight with sporadic high tone and jerking if in pain). This means two of us are needed to lift him up in bed to give drinks of water or to transfer from bed to wheelchair to toilet chair. If uncomfortable or waking often at night, then dad and I both are up multiple times through the night. People may not realize that Justin needs someone to help with all daily cares. So, we’re trying to create a “virus-free-bubble-zone!” So, I’m beyond scared of Justin, or really anyone in our family, getting COVID-19.

11-year old Justin with younger brother and dad, White House in background

BACK TO JUSTIN

Because we’re in these uncharted waters, I want to talk about how we can slow the tide so that we don’t overwhelm the hospitals for those who truly need it.

What can we do to slow the tide?

  • Practice social distancing- look, I know it is easy to not do this. We are a social species and will always be, but we don’t want to pass coronavirus around like a viral tweet. For now, I’m just hanging with my family and we still have 2 personal care attendants who are able to help me out.
  • Don’t hoard masks or anything- you are potentially taking away from someone who needs it.
  • Wash your hands regularly- just basic advice from every single health organization, 20 seconds.
  • Loved this bit on John Oliver’s show from 3/2/2020 about Vietnam’s Coronavirus wash your hands Tik Tok dance challenge video.
  • Check the CDC’s COVID-19 website for more updates or my favorite info is from Minnesota Department of Health Coronavirus website. Find your state or country’s trusted source of information on this one.

What am I doing to keep busy?

  • Same as usual – editing my book, writing blog posts, reading a lot of books using Bookshare.org, listening to lots of great music, watching YouTube, and hanging out with my family.
  • Last night, my grandma came over for dinner and we Google chatted with my aunt and cousins in Kentucky. Don’t get to see them in person very often so nice to have tech that helps keep us all connected.
  • It’s going to be warmer this week, so will get out of the house and go for some walks in the neighborhood (while keeping distance from others) or just get outside in our yard for a bit of sun.

Take care of yourselves!

 

 

Frequently asked and unasked questions about writing, social media, etc.

Are you ever going to get something published?

Maybe I will, might take a while to get this book published.  I have started editing and that can take a while. This is technically my second book. I trashed my first book.

Writing anything else?

No, I’ve started outlining the next one and I am focusing all attention on editing the book I’ve written. I’ll let you know when I will start drafting this one.

What music do you listen to when you write?

I like to listen to music and groups that inspire me, make me dance, make me think, or make me feel connected.

Some of my favorites include: Billie Eilish, Maggie Rogers, FINNEAS, Brandi Carlile, Imagine Dragons, Vampire Weekend, Lumineers, Interrupters, Haim, The Bad Man, Sara Bareilles, and lots more.

Justin smiling,Word document on computer screen says

How do you write?

With my right middle finger on a Clevy keyboard with WordQ word prediction software. Check out the video.  I use Microsoft Read Aloud to read back my work aloud when I edit what I’ve written in a Word document. It highlights words as they’re read aloud which helps me with visual tracking.

Check out my YouTube video that shows how I write. I made this when getting ready to give the keynote speech at the Charting the Cs Conference a two years ago.

Why did you want to write this book narrated by a girl with cerebral palsy?

Ok, part of my decision to write this book with a narrator who is a young woman who has the same disability I do was appealing to me because it doesn’t matter what your gender is, what your economic status is, what your race is, and what your sexuality is. Writing is about empathy and being able to see the world from other human experiences.

What genre was your first book that you say was the worst?

My first one was a science fiction/romance novel (or that is what I want to call that).

What does your second book have that the first one didn’t have?

Realistic stuff. I wanted to draw from my own experiences regarding deep brain stimulation (DBS) and having a physical disability. The dialogue for the narrator primarily happens through her communication device. I am able to share a bit more of everyday frustrations through this character than I do in my real life. This book feels more honest to me.

Why don’t you post on social media more often?

Excellent question. One reason is that I don’t have a phone or easy way to post on social media when I’m out doing stuff away from my computer. If I’m out with my mom, we’ll write posts together and then she’ll post on Twitter or Facebook and tag me, always with my permission first! Never tag your kids unless you have their permission! Even when they’re adults! Here’s an example of how my mom and I partner up.

 

I should be posting a lot more than I am and we’re looking into options for phone access, although it’s tricky because physically, I can’t use a phone and we haven’t figured out a good way to use with my somewhat old communication device. And with the amount of time it takes me to type in my communication device, I’d end up missing out on a lot of living if I’m spending all my time typing a short tweet or post.

Second reason is that social media can be a huge time suck so when I’m at home, a lot of times, I’d rather be writing or working on my books, reading books, or watching YouTube.

That’s it for today. I’m probably laying low for a while. I don’t do well with viruses.

All best – Justin

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A couple thoughts for this week.

I’m stuck

I’m not exactly endorsing any democratic presidential candidates for one reason: TOO MANY CANDIDATES with things I like and dislike about each of them! I think I’ll be deciding when I get to the voting booth on Super Tuesday. No matter who you support, show up and vote.

And if your candidate doesn’t win – support whoever does and show up and vote in November. Don’t forget about elections for US Representatives and Senators, state and local races – all of these matter.  I know that I said those words before… as a disability rights advocate – these races all have very real impacts on my future!

 

Coronavirus

Stuff like this always makes my mom nervous. I can have a hard time when I get sick – takes me longer to fight off sickness. So, for me, I need to make sure that my caregivers are healthy, and I stay healthy. One thing to think about is that caregivers don’t make a lot of money and may not have a lot of sick leave. It’s easy to say, just stay home if you’re sick – but that’s not reality for a lot of people who don’t get paid much and may have no or little paid sick leave. Just something to think about… because that describes a lot of personal care attendants and support staff for people who may be whacked the hardest by this virus.

By the way, the picture below is from our family vacation to D.C. in 2009. The day before I got sick with what was probably H1N1, I was touring the White House when I started getting sick. I still need a do-over trip to  D.C. someday.

11-year old Justin with younger brother and dad, White House in background

Let the editing begin

Starting to edit my book this week. I’m super excited because I care about the characters. I’ve missed them this past month!

That’s it for my super thoughts this week. Vote on Super Tuesday if you live in a Super Tuesday state. And wash your hands!

Justin at computer