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
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
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
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
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
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
I don't have the energy for a full story today, though I have plenty I am eager to tell. Unfortunately, I'm in the middle of a long battle that is taking all I've got. Remember that post about me sleeping 18 hours some days and then not at all? My circadian rhythm is still a … Continue reading Keeping My Head Up
"Ecological Fallout: ALS Linked to Toxins and Pollutants" By Laurie L. Barclay, MD My reaction: I knew it. Instinct (and the insanely long survey I had to take about toxin exposure) hinted to me that ALS may be triggered by environmental contamination. I may not be a scientist, but I am a tree-hugger, and we … Continue reading The Two-Headed Frog
How I Live Now: Life With ALS 