"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
Category: Clinic
Feeding Tube Foodie; or How I’m Being Lured to the Dark Side
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
A Wild and Lonely Belief
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
A Lesson on Joy
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
The Nightmare
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
Drug Trial FOMO
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
Writing Through It
Ever since Donald Trump won the election, I am a stranger in a strange land. For our next leader, my country chose a man who personifies rape culture. My PTSD from when I was sexually assaulted is already severe because of him. Listening to him for the next four years and knowing he has power … Continue reading Writing Through It
A Brave New World
On June 10, 2015, I shared this message with my loved ones… “Dear family and friends: I am so sorry to have to tell to you that today I was diagnosed with ALS. I am sad and scared, but also hopeful that I will live longer than the average ALS patient because mine is a … Continue reading A Brave New World
How I Live Now: Life With ALS 