In a couple of days I will be having surgery to replace my infusion port which has become blocked by fibrous tissue. This will be the third port I’ve had implanted near my clavicle to transport the ALS drug Radicava. I am hoping the third time...
You Are a Beast
Until the pandemic began, I practiced hot yoga for almost a decade. One day after class a young woman who had been practicing near me approached me in the locker room. She leaned toward me and brought her face close to mine. “You are a beast,”...
Invalid–Or Still On Active Duty?
I am just back from a glorious four-day writing retreat in a desert landscape in central Oregon, where I went with my good friend Miriam. The time was special for so many reasons. The property, which has several cabins for writers and artists, is...
Hello, Baby Radley
Two days ago my niece gave birth to a lovely healthy baby girl. I have not seen her in person, but I enjoy gazing at pictures of her tranquil sleeping face. There is nothing more beautiful and hopeful than seeing a new, unscarred human being. She...
Rituals
Every night, just before bed, my husband puts on my feet the toe socks he gave me for Christmas. One foot at a time, balanced on his chest, he makes sure each toe is in the proper slot. It is one of those activities we execute in precisely the...
Unfinished Business
I am working as diligently as I can on a new novel, but novels cannot be rushed, and at the end of every work day, as I lay down the unfinished manuscript, a thought haunts me. What if I don’t have time to finish this novel and it is...
Body Inventory
I was in college and deeply involved in theater. We were doing an exercise blindfolded, in a dark room, and we were instructed not to speak but to get to know each other by touch—a group grope. Afterwards one of the participants told me he’d...
My Husband Nurtures Me Like a Plant
A year ago, shortly after my ALS diagnosis, my husband, Paul, began to cultivate seeds under a grow-light in his study for the upcoming summer’s vegetable garden. He took to this project with scientific precision, glad to have a focus for his...
Time Out of Time
When I was teaching college-age and graduate fiction writers, I liked to use an exercise called “Braiding Time” to encourage the students to think about the interior lives of their characters and getting closer to understanding their habits of...
For 20 Minutes No One Needs Me: The Relentless Pull of Productivity
Recently I was out of commission for a few days due to an unexpected reaction to a drug I’m taking for ALS. I could do nothing but sleep. I couldn’t imagine I would ever get enough. But each time I woke, I was seized with panic. I had things to...