The sound of the microwave whirring to life sliced through my interest in the book I was reading in the living room. I made a beeline for the kitchen where my husband Evan was clearly up to something delicious. (it was a good day for me in terms of hand strength, so I was able … Continue reading Feeding Tube Foodie; or How I’m Being Lured to the Dark Side
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!
3 I have always struggled to acknowledge and accept my limitations to the point that I often push myself far past them. From middle school through college, I participated in at least three extracurricular activities each year. OK, that's a lie. It was more like four or five. I was in a leadership position as … Continue reading Pacing Myself
7 5 8 8 9Dedicated to Dr. Goslin for giving me permission to believe, and my husband Evan, who shields me from the worst of the winter winds. I am a voracious reader. I always have been, thanks to my parents and grandparents, who planted books around my house in places I could reach even … Continue reading A Wild and Lonely Belief
4 Something about spending time on a covered porch always leads me reminiscing and daydreaming. As the rain clears to make room for the summer sun, I spend hours out there, watching my dogs play and letting my mind float on the afternoon breeze, I remember, and I plan. This beautiful weather makes me miss … Continue reading Summer Dreams
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
At the recommendation of ALS Worldwide 129147 and with the approval of my beloved neurologist, I have begun an unconventional course of medications. I use the word "unconventional" because some of the medicine is either not typically used in cases of ALS or is being used outside of the FDA approved dosing. Additionally, none of … Continue reading Rag Doll
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
In the movie adaptation of my life, the climactic scene would go like this: the camera slowly sweeps up to where I am snuggling into a warm plaid blanket on a rustic porch. The sun peeks out from where it slept behind the mountain range. The soft light on my face shows I’m at peace. … Continue reading A Lesson on Joy
Tonight, after reading and listening to a podcast for a few hours, I felt stir-crazy from sitting for so long. I needed to get up. Specifically, I felt like trying out the Movements I saw on the Netflix series “The OA”. I was just about to do that when I remembered I could not get … Continue reading Sleepwalking
How I Live Now: Life With ALS 