Photo by Ella Olsson on Pexels.com This piece is about the last summer I could eat before losing the ability to chew and going on a feeding tube. Summer in Amber We held that whole summerIn our strawberry sticky hands,Trapped it in our tiny kitchenWhere sunbeams tangled with our legsAround too much furniture,Each piece an … Continue reading My California Kitchen
Category: Fear
Every Breath You Take
"Every breath you take just proves how blessed you really are." - John Landry "This is Rachel Doboga's ventilator just after starting the nebulizer, and her oxygen is dropping to 95, now 93," Evan says, holding his phone up to film my ventilator readings. He stops filming and turns off the nebulizer. "My head is … Continue reading Every Breath You Take
On the Other Hand
2 It can be hard to "live my truth." Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle. Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral … Continue reading On the Other Hand
I Am Not OK
4 3 2 As I write this, I am sitting in bed, watching a funny show while checking my email, text messages, and Facebook notifications. It is the middle of the night, a time of terror for me, so I need the safety of the blue electronic light of my devices. I bask in the … Continue reading I Am Not OK
Dr. Jeff, the Jugular, and Me
To be read with "Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor," originally published by ALS News Today, October 2, 2017 Whether or not your doctor practices emotional intelligence will make an enormous impact on the quality of your care and mental health. At best, a doctor lacking emotional … Continue reading Dr. Jeff, the Jugular, and Me
Save Medicaid from Being Slashed!
The health care bill draft currently being reviewed by the Senate slashes Medicaid to the bone. If the bill is passed, 14 million of the most expensive beneficiaries - particularly, the elderly and disabled, including those suffering from ALS - will be kicked off Medicaid! Use the following text to write to or call your … Continue reading Save Medicaid from Being Slashed!
Three Dreams and A Dragon
When I was thirteen, I bought a small, blue, canvas-bound book whose title, scrawled in loopy silver script, read, "The Interpretation of Dreams." I purchased it because every morning, I awoke with vivid memories of three, sometimes four, dreams. About half of them were nightmares, but they didn't trouble me as much as what I … Continue reading Three Dreams and A Dragon
Learning Helplessness
Today while out on a (st)roll, I witnessed a toddler run out into the street in front of a car. I was unable to do what every molecule in me demanded: race to the boy and snatch him up out of harm's way. I couldn't even scream in horror or point and shout so a … Continue reading Learning Helplessness
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
How I Live Now: Life With ALS 