Justin with mask on face
Advocacy, Health, Political, Writing

2020202020202020202020202020

It’s been a difficult 2020.

I would say that it’s been a difficult couple of years for me personally in figuring out what to do with my life and dealing with medical issues. But 2020 just added a whole new meaning to difficult.

Thoughts on COVID

I am at high risk of catching this virus worse than others because in general every time I get sick, it lasts longer and hits me harder. This also means when I get sick, that it can be exhausting for my caregivers. I was probably somewhat isolated before COVID just because that’s my life and even more so now. We have reduced our caregivers coming into our house to just Trevor.  With how many people aren’t wearing masks or thinking it’s no longer a big deal – it makes it even scarier for me to try to get out in the world.

Writing New Stuff

These last two weeks, I’ve started another writing project in which my two narrators are trapped in a room for a weekend. This is a passion project to pass the time while the alphas (early readers) finish reviewing my other book. I’m writing this from two points of view because I kind of always have wanted to write a multiple perspective story. One has cerebral palsy (CP) and the other has a hearing disability.

This is the first time I have ever written a character who has the same hearing disability as I do. As many of you may know, in addition to CP, I also have auditory neuropathy (AN) and severe sensorineural hearing loss. As you old-time readers of the blog know, AN is like a static-y radio in my ears – sounds come in and out, muffled and garbled. I’m writing this character in a way that captures the way I hear what’s actually being said. For example, if someone says, “So if,” my character (and I in real life) hears “soul ick.” Now, imagine this with every word, every sentence you hear all day long. This is one of the reasons, that captions and seeing people’s faces when they speak are absolutely critical for me – even in everyday conversations.

Final thoughts for the day

  • Finally got approved for SSI (Social Security Supplemental Security Income for people with disabilities) 11 months after my second application.  Topic for a future post on how many things like this have to be in place for me to live an independent life and just how difficult it is to navigate this system.
  • Can’t wait to vote for Justin Stofferahn for my next State Senator. I need a new State Senator! We all need a new state senator in Senate District 38. My State Representative Ami Wazliwak is awesome and voting for her again, too.
  • Get your mail-in ballots. If you’re in Minnesota, register for ballots on the Secretary of State website. Seriously, VOTE!

Happy Father’s Day to my Amazing Dad!

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