Disability, lifestyle, and nerdy thoughts.
Being disabled is something I often celebrate. But here’s something I don’t say a lot: I really hate some of things muscular dystrophy does to me. Muscle cramps suck. Getting exhausted after moving 3 things off your desk is unendingly frustrating. Feeling like something should …
When it comes to disability, it’s been my experience that most people are either afraid to ask questions or will be completely shameless and ask way too many super invasive, personal questions. While I definitely prefer the first kind of person, the common thread is …
Y’all… almost a year later and it finally happened. My new wheelchair was approved and delivered! She’s here and she’s pink. Like, super pink. She’s also got some fun new features and is a different kind of chair that I’ve never used before. If you …
After job hunting for nearly two years, I honestly couldn’t explain to you the feeling of relief that washed over me when I heard that someone wanted to hire me. Like, I almost didn’t even believe it. It took weeks for it to fully sink …
Today is Rare Disease Day, which was created to raise awareness for rare diseases and the people who live with them. I was diagnosed with Congenital Muscular Dystrophy when I was a baby, which is a rare neuromuscular disease. If you want to learn more …
There’s a lot of curiosity surrounding disabled people and what our lives are like. When people learn about muscular dystrophy they sort of picture my life as being pretty unpleasant. But I think a lot of people would be surprised to see that a day …
A lot of people that I meet or talk to about my disability have never heard of it. Those who have heard of it often don’t really know much beyond the name. I usually just throw out some generic line about having weak muscles, but obviously, …
Feeling good, like genuinely good and not just a ‘hey I took a good selfie’ good, about your body is freaking hard. Especially with social media. Everywhere you look, you’re bombarded with beautiful people and we’re always our own worst critics, so we compare. If …
All my life, people have loved to ask me why I’m in a wheelchair. And all my life, people have been confused when I’ve told them I have Muscular Dystrophy. I didn’t realize that so few people knew about my disease. I mean we have …