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!

 

 

Just super

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