Category Archives: Progression

Good Fortune

Scarlett came home from school recently with two fortune cookies to celebrate the Chinese new year. The first one said “The best times of your life are still ahead.” For her, at age almost-seven, this is of course true. But it made me wonder, at what point do you get to the place in your life where it isn’t true anymore? I am probably there myself. Although I still have good times to look forward to, I think it’s safe to say the best times of my life are actually behind me. Which is something I didn’t expect to be saying at the age of 38.

The best times of my life were probably when Scarlett was young and I was still mobile. When I thought I had years and years ahead of me to experience all that life offered to an able bodied, active, and adventurous person. The best times of my life should still be ahead of me, but they aren’t, because I can’t move and I am no longer an independent woman.

Scarlett and Rob are skiing in Lake Tahoe for four days. Read More>

Someday

I canceled all of my appointments for this morning, feeling too tired to deal with the real world and the people who live in it. It’s raining outside and Otto is pacing the floor. I spent an hour reading blog posts that I wrote to Scarlett in 2011 and 2012. They didn’t make me sad, but I did feel nostalgic for a time when she was a ferocious toddler and I was her complete mom. I know, I know. I’m still her complete mom, but that’s not what I mean. I mean the mom who moved, who drove, who carried her across the city, even as I began experiencing symptoms of ALS. I read blogs about her first few days, weeks, and months at preschool. When I knew I had ALS, but I was still so mobile that I saw no need to acknowledge it.

Right now my sister and her family are in New York, and when I facetimed her this morning, she immediately put the phone up to the street sign over her head: 23rd St. and 10th Ave. Where Rob and I used to live. They were going for lunch at our favorite tapas restaurant, a place we frequented when we lived in Chelsea. I miss New York. I miss those early days of Scarlett in San Francisco. Sometimes I wish I could go back for just one day and appreciate the use of my legs, the strength of my arms, my ability to be alone with my little girl, or to jog along the Hudson River, just to be in charge of my life. But in most ways, I don’t want to go backwards. This month has been busy, but fun. We went to a gingerbread house decorating party yesterday, and Scarlett has a winter sing at school tomorrow. In the mornings, we sit together at the dining room table while she eats a scone and tells me stories. Who said what, who did what. She laughs and uses the words like and dude. She is so different from that feisty baby I remember, and somehow still the same. Read More>

Looking Forward

Rob and I watched the movie Gleason last week. He was out of town when I attended the San Francisco screening, so this was his first time seeing it. Now that it’s on iTunes and Amazon, I highly recommend that everyone check it out if you haven’t seen it already.

Seeing the movie for the second time was eye-opening for me in new ways. The first time I watched it, I was very focused on the relationship between Steve Gleason and his wife Michel as they navigated ALS. It seemed like they came to the disease from such a place of strength and connection, yet it was and is an incredible challenge to maintain a relationship. Rob and I know all about that, and judging by the conversations I have with other ALS patients, we are not the only ones. So this time, I set the relationship stuff aside, and I just watched Steve.

I watched him as a strong professional football player, muscled and aggressive and fast. I watched him as a groom, and as a traveler. I watched as he fell while attempting to run across the rug of a church. Read More>