X-File 06102015: ALS Agent Fox Mulder, the protagonist of the cult classic TV show "The X-Files", is on a mission born of personal tragedy. He is obsessed with hunting down UFOs in order to find answers about extraterrestrials because as a child he witnessed his sister being abducted by aliens. His search for answers is … Continue reading Choosing Hope Over Fear
Category: Advice
How To Pee From A Sling With Dignity
Immediately upon being diagnosed with ALS, I heard from doctors, support groups, books, and websites that this disease will steal my dignity. I wanted to be on guard against this, but there was a problem: I didn’t have a clear understanding of what dignity means. It was always just a collage of images: Dame Judi … Continue reading How To Pee From A Sling With Dignity
Always Forward
"If all you can do is crawl, start crawling." - Rumi
Beloved on the Earth
"And did you get what you wanted from this life, even so? I did. And what did you want? To call myself beloved, to feel myself beloved on the earth.” ― Raymond Carver, A New Path to the Waterfall
Welcome to the Helicarrier
Warning: Excessive Marvel references ahead. This is not the story I wanted to write today. I planned on sharing something emotional and joyful. It was going to be a bigger piece, and I looked forward to a long stretch of appointment-free hours to get it done. However, ALS doesn't care about plans. Like Loki in … Continue reading Welcome to the Helicarrier
Reality Check
"Honey, whether or not you accept help doesn't change the fact that you need it." I received this great advice from a nurse as I struggled to accept all the new braces I need to keep my feet flat enough to bear weight. As I try to maintain my independence, I know her words … Continue reading Reality Check
How I Live Now: Life With ALS 