Category Archives: Progression

Being Someone Else

When Rob and I lived in New York, I walked to work. It took me about 20 minutes to get to my job at a Manhattan publishing house, something that sounds so glamorous when you write it, and actually was occasionally that way. Picturing myself walking across town on 23rd Street in heels is like recalling a movie I’ve watched over and over again (something besides Wayne’s World.) Could that have been me?

I would likely have these disconnected feelings about that time even if I didn’t have ALS. After all, so much has changed. We moved to California, I worked from home in yoga pants and had a baby. I started hanging out at playgrounds and speaking knowledgeably—even passionately!—about Music Together and tumbling classes. Heel wearing had declined considerably long before I started tripping over my own feet.

But back when I first moved to New York, it was November 2005, and the staff at my company was working on a book due to launch the following year. Read More>

|Categories: Life, Parenting, Progression, Relationships, Vanity | Tags: , , , | Permalink

Life and the Weather

Scarlett started her third and final year of preschool last week. Rob and I both brought her to the first day, like we have done every year, and took pictures in front of the building. What could provide a starker realization of how much my illness has changed our lives than images of my daughter growing up each year, while I become more disabled?

The first year, when she was two, I drove her to school and walked her into class, wearing flats to avoid tripping, but without any real difficulty. The next year, she was three, getting so much taller and talking all the time. I pushed a walker into the classroom, watched her play, and kissed her goodbye.

This year, I was the mom in the wheelchair. Read More>

|Categories: Life, Meditation, Parenting, Progression, Relationships, Venting | Tags: | Permalink

Voice Banking, Take 2

My new headphones arrived this week, so I sat down once again to begin recording myself using the voice banking program ModelTalker. After measuring the silence levels in the room (I sat there, trying not to breathe), the program presented me with 10 phrases to read aloud. Among them:

The grizzled old fellow could see on one side.

He had rides in the wheelbarrow.

Is he made of tin or stuffed, asked the lion.

The whole circle was agitated.

The wolves surged to meet him.

There’s another way you can get a tooth out.

So, you know, everyday stuff that normal people are always saying to each other. Read More>

|Categories: Life, Progression | Tags: , , , | Permalink