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
If I had full use of my hands again, the first thing I would do is hold Evan’s hand. It is impossible to interlace our fingers when mine are so weak and wobbly. I also miss my hands as instruments of creativity. I used to sketch, paint, and even sculpt. I wanted to pursue my … Continue reading Hands: Part 1
I had to work for my miracle, sweat for it, white-knuckle it, but I didn't mind; I never expected a miracle to be easy. No one promised me a rose garden. I woke up from a nap today needing to use the bathroom, so I hit the button that pages my sister and planned how … Continue reading White-Knuckle Miracle
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
"If all you can do is crawl, start crawling." - Rumi
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"In my mind I am eloquent; I can climb intricate scaffolds of words to reach the highest cathedral ceilings and paint my thoughts. But when I open my mouth, everything collapses.” ― Isaac Marion, Warm Bodies
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
How I Live Now: Life With ALS 