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
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
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
When I was sixteen, a fortune teller at a fair predicted I would meet and fall in love with a man who would physically take care of me. At the time, I didn’t understand what she could possibly mean. Would I rely on my husband for money? I was hungry for independence and therefore a … Continue reading Fortune’s Fool
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Only two more days until my Tobii Dynavox comes. I cannot wrap my head around this. I'm getting back the ability to text and talk on the phone. I will be able to write emails and blog posts at a more normal pace (right now, my fingers are a total mess, so I type like … Continue reading A Wind in the Door
Recently, I got my Cough Assist breathing machine. It will help prevent me from getting pneumonia and exercise my lungs to keep them strong (you know, since I'm not doing yoga and cross training so much lately). It pushes air into my lungs and sucks it out, forcing me to breathe deeply as though running … Continue reading Cough Assist
Entering the labyrinth of vintage furniture store Lounge Lizard, where the test begins. Do not be distracted by baubles, for the path is fraught with many dangers and temptations. You see, the ultimate test of wheelchair agility is successfully navigating a vintage store without breaking anything... Even when adding a tiny dent might drive the … Continue reading The Wheelchair and the Labyrinth
Warning: Excessive Marvel references ahead. This is not the story I wanted to write today. I planned on sharing something emotional and joyful. It was going to be a bigger piece, and I looked forward to a long stretch of appointment-free hours to get it done. However, ALS doesn't care about plans. Like Loki in … Continue reading Welcome to the Helicarrier
How I Live Now: Life With ALS 