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
I am in a painfully bright room. White walls, white cabinets, white floor, all illuminated by fluorescent lighting. Evan is to my right, seated in a black plastic chair, left leg on his right knee, hand on his ankle. He is several days behind on his beard maintenance, and he keeps running his hand through … Continue reading The Nightmare
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
Lately, I feel like the little girl in this music video - that I have to put on a cape and mask just to face the world and my increasingly isolated place within it. Of course, that's not a healthy or sustainable way to live, but I try all the same. Perhaps I try because … Continue reading Oceans Between Me and You
The chaotic politics that have defined 2017 must not overshadow the legislative efforts to make life better for ALS patients and families.
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
I have a serious case of drug trial FOMO (fear of missing out). I just completed my year-long Tirasemtiv drug trial. I don’t know whether I was on the placebo or active drug. However, I have been invited to join the open-label extension of the clinical trial. That would mean I definitely would have an … Continue reading Drug Trial FOMO
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
As long as I’m listing what I miss using my hands for, I might as well ramble on a bit more. I miss the responsibility my hands gave me. I miss choosing fruit at the farmer’s market: laying a smooth, firm tomato in my hand, rubbing my thumb over the amber fuzz of a peach, … Continue reading Hands: Part 2
How I Live Now: Life With ALS 