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

Related posts

Just super

Plotter or pantser?

Done!

The novel

NaNoWriMo and More

Ready for AFC Wimbledon, Art & Writing

 

Plotter or pantser?

I have started planning the next book and I mean that quite literally. I say that because I pantsered the last two books. Although I didn’t know this, I think that I might actually be more of a plotter.

Wait, what is a pantser and plotter?

Ok, when I wrote my first two books, I had an idea of what kind of story I wanted to write, but I had no outline for the books – this is referred to as “pantser” as in fly by the seat of your pants. This makes it harder for me to edit because I don’t have an outline for the novel and made it difficult to get unstuck when I had writer’s block and not sure what direction to take the story.

I’m outlining everything in the next book – this is referred to as “plotter.” So, for my next book, when I draft, I have my map to go back to. The nice thing about a map is that I can stay on the path I charted out, but there are lots of possibilities of how to get to my destination – and if I get started down a path that’s not working for me – I can always change where I’m going. But I have a starting point, a general idea of where I’m going, and what I’ll find when I get there.

Wait, what about the book I just finished?

In my last post, I said that I just finished the draft of my book and I’m taking about a month off and then will start working on editing. I couldn’t wait on outlining my next story though because the ideas are bursting in my brain.  Don’t worry, I’ll be hard at work on the Until the Lights Die (my own unofficial title) draft.

One cool thing, if you’re a writer, author, aspiring anything – check out NaNoWriMo.  My friend, Annie, told me about this organization last fall and I love the community of writers. When I posted on the NaNoWriMo Facebook group that I had finished the first draft of my book – I had 185 messages of congratulations, and 2.1 thousand likes within hours. WOW! What a great community for encouraging writers to keep going. We have important stories to share with the world!

Wait, do I ever take a break?

Yep, fun concert last night at the Fine Line. Saw Weathers and Echosmith.

This Tuesday, 2/25/20. will be a busy day for advocacy – another thing I love! Disability Day at the Capitol is in the morning and a great way to learn about issues impacting people with disabilities.  Find out more about the event on The Arc Minnesota 2020 Disability Advocacy day site.

Man with arm around Justin, We belong in the community sign hanging on front of Justin's wheelchair

And don’t forget, if you live in Minnesota, the Precinct Caucus is this Tuesday. Why is it important to go to your caucus? For me – it’s supporting my awesome State Representative Ami Wazlawik and supporting Justin Stofferahn who is running for my State Senator. Time to flip our senate seat blue! It’s not all about the presidential election – local politics matters! It’s an important year – get involved!

That’s all for this week.

Done!

Did it! 1st draft of my 2nd novel is done!

When I started my second book, I wanted to do this narrative as a twenty-one-year-old who is looking back on the time when she was sixteen. For the narrator, I draw upon my own experiences of having cerebral palsy, using a communication device, power wheelchair, uncontrolled movement and jerky muscles, etc.  All this wrapped in a story of mystery and comedy and light.

“Until the lights die, let the story about yourself be your own personal story and no one else’s.

Until the lights die, we don’t know when we will shine. Until then, live.”

– Justin Smith

Read my earlier post about The novel

Justin smiling,Word document on computer screen says "The End"

Justins for Justin

Another exciting moment this week was introducing my friend Justin Stofferahn at his State Senate District 38 Kickoff. In all the drama around the presidential caucuses and primaries, don’t forget how important your local and state races are! I’m doing what I can to help Justin get elected as our new State Senator and flip our district blue. This race matters. This election matters. It’s important for all of us to get involved – because, you guessed it – it matters!

Find out more about Justin’s campaign at JustinStofferahn.com

 

2020 Goals

I don’t do resolutions for the New Year, but I do have a ritual where I write the goals of what I know that I can accomplish.

Politics

I am extremely excited for this election season because we get to choose who our elected officials are – from my local representatives to state and US representatives and senators and President. I’m also nervous for that same reason and lots of other reasons. Participating in the political process matters because the people we elect make decisions on laws and policies that impact people with disabilities. Elections matter! I will be doing a lot more posting about this leading up to November which brings me to the next goal which is…

Blogging & Writing

It brings me great joy to get the word out about living with a disability and I want this to be a community-building effort. So, please like, retweet, share on Facebook, and comment on my posts. This is what helps us all connect. It also helps me know that my voice matters.

So, I see my blog and writing as my vocation. Yet, it’s an unpaid vocation. I would like to explore how I might earn a little income from what I love to do. Something I’m going to do in the next year is look into how I might monetize my blog. There are pros and cons to this and I am going to look at all sides before I make my decision.

This has been my joy of my life to write. Without writing, I don’t know what I would do. So expect lots of blogging from me this year. I also have a goal to finish the novel I’m writing by Valentine’s Day. Then will start editing in the spring.

Living life

Finally, and this is an ongoing thing, continuing to explore and figure out along with my parents, how I will live independently.

Check out one of Chris Serres and Glenn Howatt’s recent article for why this is so difficult to figure out: Disabled Minnesota residents often live in costly isolation. You can check out my blogposts from last year about what I would like to see in my future:

In the next several months, you can find me at my computer, a concert, a rally, primary, or caucus! Happy New Year everyone!

 

Top Moments of the Decade

This is not an easy list. So many things happened that could have been the most memorable of the decade. Well, there are the DBS surgeries, I think they’ve had a huge impact on not just me, but my whole family. But, I want to focus on non-medical, non-traumatic moments.

April 14th, 2016

My first post was published on justinsmithwrites.blogspot.com. It was part of a school assignment, but don’t hold me to that, and I just kept writing after the class was done. I love sharing life as I live it in my new and improved WordPress blog.

Graduation

I gave the graduation speech that same year and well, I’ll leave links to the video and the blog post down below.

Writing the first book

I have not read it since trashing it. It has never been my priority to get it out in the hands of the readers, not like this novel about a teen girl who has CP. I proved to myself that if I put my mind and heart into something, I can get it done.

April 2019

I began writing this beautiful book and I like this narrator and I like the characters who I have gotten to know.

Little moments

My favorite moment was the little moments. The hour before the first DBS surgeries when I was put on my mom’s lap, to the moments I had in school, trip to Boston with my WBUUC Youth Group, nerf sword fights with my brother, baseball games with my dad (Twins, Chicago, St. Louis, Cleveland, Milwaukee, Toronto), reading the book Paper Towns and being stopped dead by the last paragraph, and to the moment when I decided that my current book might be done by Valentine’s Day.

Here is to the next ten years. Happy New Year’s and New Decade!

Looking Towards the Future High School Graduation Speech

The novel

I’m feeling fantastic about how the novel I’m writing is panning out and the characters…OMG! Awesome!

I’ve set a deadline for the first draft and it’s literally on Valentine’s Day. Might finish it sooner than that, but my goal is Valentine’s. The reason why I picked that date is because my book is a romance, mostly. It is about human relationships and what we do when a relationship doesn’t work out.

I’ve got to finish what I hope is a brilliant book and step away from it for a month or two (break for political season – caucus, primary, legislative session, ADVOCACY!). Then, I have to self-edit the thing. Then send it to critique partners. Edit some more. Send it to beta readers. Edit some more. And maybe send it to sensitivity readers. And maybe, edit some more.

My book is a mystery romance novel narrated by a young woman with cerebral palsy and she is searching for a former friend. The reason why I wanted to write this book is because I never really attempted to write a novel about how I was feeling when I was fifteen or sixteen. This is when I went through multiple deep brain stimulation surgeries, had a surgical site infection, etc. It was a somewhat confusing time in my life, and I can bring some of those feelings and experiences into this story I created. I have never attempted to write about how I perceive my disability and I needed to write a realistic story about this.

Back to work on my book.

p.s. NaNoWriMo Report: wrote every day and ended up with 5 more pages than my goal.