In her 2003 essay, Spoon Theory, Christine Miserandino describes what it feels like to live with chronic illness. She tells the story of being with her friend in a diner when the friend asked her what it felt like to have Lupus. Christine went around the diner and collected twelve spoons from nearby tables. She …
Just a couple of days ago, the FDA approved a new treatment for my disability, Spinal Muscular Atrophy (SMA). It is called Evrysdi (the chemical compound was called Risdiplam) and, unlike the previous major therapy, Spinraza, it comes in the form of a pill rather than a spinal injection. This means that people like me …
While I'm not going to promise that this will be my last COVID-related post, I do promise that I will change the subject after this week. I know it's been a lot for everybody both inside and outside of the disability community to hear about constantly, but it's important that we don't forget that people …
Continue reading “Sorry, But That’s Impossible”: Accommodations in the Age of COVID-19
Sometimes I'll come up with an idea for a blog post and spend like weeks hyping it up in my own mind before I write it. Then, by the time I get to it I draw a complete blank about what to say. This is one of those posts. How do I even begin talking …
Do you remember your worst date? Does the memory of it make you cringe? Mine does. My worst date was with a guy I met on OkCupid. He lived 45 minutes away in the outskirts of town so when we decided to finally meet in person, we picked a Burger King that was halfway between …
*To my readers: I apologize for the long absence (again). I was applying to law schools and am proud to announce that I will be attending Saint Louis University School of Law this coming Fall! Thanks for your patience and I promise to write more consistently on this blog.* If I had a dollar for …
Imagine waking up to find yourself strapped down in bed, completely unable to move. You'll probably be unstrapped soon, but until then, do you go back to sleep? Can you go back to sleep? Should you even try? No, I'm not talking about Gerald’s Game (although the movie that just came out on Netflix is …
A few weeks ago, my boyfriend and I took a road trip to Washington, DC. We were there for an advocacy conference and were away from the hotel room most of the time, so I had the fun experience of trying to find a public restroom I could use. It did not go well. For …
As many of you already know, the latest draft of the Republicans’ health care bill, the American Health Care Act (AHCA), passed by a narrow margin on Thursday in the House of Representatives and will soon move on to the Senate. Among the changes the new bill makes to the existing Affordable Care Act is …
This is the first in a multi-part series dealing with mental health issues and impact that mental illness has on disability. Once upon a time, and not that long ago at all, I woke up on a coldish spring morning and the first thought in my head was "I shouldn't be alive anymore." I was …
Continue reading Mental Health Part One – A Long-Term Problem
The Girl Who Sits 