Once upon a time, this was me. She still lives, but hers is a suffocating, frightened existence inside the shell ALS built around her. Sitting in my wheelchair, too weak to lift a teacup, I make a resolution: to do anything and everything to be the girl who dances with fire once again. Now, I … Continue reading Other Lives
Category: Uncategorized
Demon in My View
Photo by Bob Clark on Pexels.com "I have not been as others were - I have not seen as others saw... When the rest of Heaven was blue of a demon in my view." Edgar Allan Poe, "Alone" I'm so sick of ALS. It is hitting me once again that this is my life, and … Continue reading Demon in My View
Let’s give them something to talk about
Yet again, ALS is bent on attacking my sense of self. Because of my disabilities, I am stared at, belittled, and even infantilized almost everywhere I go. I've always had a thin skin, and this treatment feels like hundreds of papercuts. Stares make my face hot with embarrassment, and I am overcome with the need … Continue reading Let’s give them something to talk about
The National Park Ice Bucket Challenge Twist!
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
Dirty Floorboards
“I've always envied people who sleep easily. Their brains must be cleaner, the floorboards of the skull well swept, all the little monsters closed up in a steamer trunk at the foot of the bed.”― David Benioff, City of Thieves Some days I sleep 18 hours. Other days I can't sleep at all, or at … Continue reading Dirty Floorboards
Leaves in My River, Stars in My Sky
I hate crying - it's an uncontrollable language of pain, and I lack enough control as it is - but I was crying tonight. I've heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, "It's just sadness," then put … Continue reading Leaves in My River, Stars in My Sky
The Luckiest (Wo)Man: Ales for ALS
Check out this Father's day brew kit. It's part of the Ales for ALS program. A few months ago I was trying to decide what I wanted to brew and when I saw a kit with the Ales for ALS logo, I knew I had to do it. Cheers, this one is for you Rachel! … Continue reading The Luckiest (Wo)Man: Ales for ALS
A Wind in the Door
Only two more days until my Tobii Dynavox comes. I cannot wrap my head around this. I'm getting back the ability to text and talk on the phone. I will be able to write emails and blog posts at a more normal pace (right now, my fingers are a total mess, so I type like … Continue reading A Wind in the Door
Bringing Brain Computer Interfaces Home
Technology is the answer until medicine cracks the mystery of ALS. I am thrilled with the Tobii Dyanavox I am getting, and I can't believe even more advanced assistive speech technology is on the horizon. My favorite part of reading this post, though, was discovering that even in the testing phase, outreach efforts are being … Continue reading Bringing Brain Computer Interfaces Home
How I Live Now: Life With ALS 