I don't have the energy for a full story today, though I have plenty I am eager to tell. Unfortunately, I'm in the middle of a long battle that is taking all I've got. Remember that post about me sleeping 18 hours some days and then not at all? My circadian rhythm is still a … Continue reading Keeping My Head Up
Author: howilivewithals
When I was diagnosed with ALS at age 28, I lost my teaching career, my plans to travel, and the chance to start a family with my husband. I lost my future. I almost lost hope, but being surrounded by so many people unwilling to let me go, I stepped back from the edge. Now I am determined not to let a day go by without smiling, laughing, and fighting for my life. Follow me to learn about ALS and join the fight to defeat it!
The Two-Headed Frog
"Ecological Fallout: ALS Linked to Toxins and Pollutants" By Laurie L. Barclay, MD My reaction: I knew it. Instinct (and the insanely long survey I had to take about toxin exposure) hinted to me that ALS may be triggered by environmental contamination. I may not be a scientist, but I am a tree-hugger, and we … Continue reading The Two-Headed Frog
Other Lives
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
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
How I Live Now: Life With ALS 