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
Author: howilivewithals
When I was diagnosed with ALS at age 28, I lost my teaching career, my plans to travel, and the chance to start a family with my husband. I lost my future. I almost lost hope, but being surrounded by so many people unwilling to let me go, I stepped back from the edge. Now I am determined not to let a day go by without smiling, laughing, and fighting for my life. Follow me to learn about ALS and join the fight to defeat it!
Hands: Part 2
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
Hands: Part 1
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
This Year’s 10 Biggest Advances in ALS Research
The Blue Room
4 When I was diagnosed, I choked on fear beyond any I had ever known. It easily surpassed even the terror I felt when I was raped and almost murdered. At least then there was a chance I could make it out alive. At the moment of diagnosis, blood rushed to my face, making my … Continue reading The Blue Room
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
White-Knuckle Miracle
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
Cloudgazing
Sitting in my dark apartment, I watched the clock eagerly, biting my lip as I waited for 9:30. Because of my feeding and medication schedule, I rarely go out at night, but I was about to make an exception. Three more ticks from my kitchen clock, and I put my wheelchair on high speed, zooming … Continue reading Cloudgazing
Fortune’s Fool
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
Always Forward
"If all you can do is crawl, start crawling." - Rumi
How I Live Now: Life With ALS 