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 … Continue reading Outta Spoons
Health
To Cure or Not to Cure?
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 … Continue reading To Cure or Not to Cure?
“Sorry, But That’s Impossible”: Accommodations in the Age of COVID-19
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
The One Where I Talk About 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 … Continue reading The One Where I Talk About COVID-19
Mental Health Part Three – I’m Not a Burden
Trigger Warning: Suicide, illness Growing up, I was in the hospital A LOT. I had severe respiratory illnesses all throughout my childhood multiple times a year, and every time I would get sick, my parents would be by my side as often as they could be. I was pretty much never alone in the hospital … Continue reading Mental Health Part Three – I’m Not a Burden
The Give and Take of Disability
One of the questions I have always asked myself is ‟What would my life be like if I was not disabled?” Now, I know it’s a stupid question. I know that there's no possible way of knowing and even if there was, who's to say that the non-disabled version of me would really be me … Continue reading The Give and Take of Disability
“So, I hired a caregiver — now what?”
When I moved away from home to go to college, I had to make a rapid adjustment from being at home with my parents to living independently with the help of hired caregivers. At times, I did not handle it well. I remember wishing that I had some kind of instruction manual to help me … Continue reading “So, I hired a caregiver — now what?”
On Abuse and Not Deserving It
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 … Continue reading On Abuse and Not Deserving It
On Finding a Public Restroom
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 … Continue reading On Finding a Public Restroom
What the AHCA Means
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 … Continue reading What the AHCA Means
The Girl Who Sits 