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
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
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
Photo by Bob Clark on Pexels.com "I have not been as others were - I have not seen as others saw... When the rest of Heaven was blue of a demon in my view." Edgar Allan Poe, "Alone" I'm so sick of ALS. It is hitting me once again that this is my life, and … Continue reading Demon in My View
I hate crying - it's an uncontrollable language of pain, and I lack enough control as it is - but I was crying tonight. I've heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, "It's just sadness," then put … Continue reading Leaves in My River, Stars in My Sky
There is no excerpt because this is a protected post.
"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
Today I bought shoes for the first time since my diagnosis. It was also the first time I bought shoes I would not actually wear for walking. My new sandals will just serve as a barrier between the soles of my feet and my wheelchair's foot plates. No more worries about arch support or gaping … Continue reading A Pashmina For My Appendix
How I Live Now: Life With ALS 