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
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
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
For some reason, this lovely spring weather makes me remember all the things I love about teaching: morning meeting and yoga, book club and literature circles, zumba and dance breaks every half hour to keep our energy flowing, writing workshops, and of course, just being with the kids. Listening when recess ended in tears, geeking … Continue reading The Kingdom of Childhood
How I Live Now: Life With ALS 