Category Archives: Life

Adjusting…eventually

This weekend, Rob, Scarlett and I went car shopping. Well, to be more specific, we went wheelchair van shopping. Little less sexy, right? There are a few places in the Bay Area that specialize in vans, and we went to one in Burlingame called Mobility Works. On the weekends, they are only open by appointment, which meant we had the whole place to ourselves with a knowledgeable sales guy named Mike.

Mike showed us new and used vans from Toyota, Honda, and Dodge. It works like this: you add a 25K conversion fee to the MSRP of one of these vans. Any add-ons (leather seats, sunroof, navigation, anxiety medication) cost extra. It gets expensive. Used vans can be a good option, provided you can find one that has all of your requirements. For us, the top three are: Read More>

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

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