Scarlett and Rob are skiing in Tahoe. I have spent three nights without them, and am definitely looking forward to having them home tonight. While they were gone, I had various people stay with me, including my sister, two caregivers, and my friend Andrea who is well-versed in ALS having lost her father to the disease.
So I’ve been well taken care of, but my mood was slippery. On Saturday afternoon, I sat on the back deck in the sun, watching Otto run laps to impress me. Still I was alone and lonely and I allowed myself a significant amount of time to reflect on how shitty this situation is. When Rob and Scarlett first started going to Tahoe without me, I was incensed. It hurt to be left out, especially because I was just beginning to understand that I would be left out of so many things, even while I was still alive. I have never felt like there are places I couldn’t go. At least, not places where I wanted to go. When your legs are strong and your feet will carry you, you can go anywhere. When your voice is strong and your breath a guarantee, you need not question your place in the world. When your hands can open and close and your arms can reach up and out, you are allowed to be connected.
But my breath doesn’t come easily, and I can no longer sleep in a normal bed without torturing myself and my family. So Tahoe trips take place without me. As do trips to Arizona and Florida and even concerts at inaccessible venues with smoke machines that would have me gasping whether or not I could roll in unassisted. Whose world is this, Nas asked, and his answer the world is yours doesn’t feel true to me anymore. I certainly still have a world, but it seems to have gotten much smaller. Read More>
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>
We are back in Lake Tahoe. When I announced this plan, several friends consoled me, clearly remembering the challenges of our last trip to the mountains. This was sort of funny, because one of them did it in front of Rob, and although I think he knows that Tahoe is not at the top of my travel list, I’m sure he was surprised to hear that I was accepting condolences.
“Sarah is taking one for the team,” he said, playing the good sport.
In many ways, it’s a silly thing for me to complain about. We stay at arguably the nicest hotel in the area, and Scarlett and Rob both love skiing. We found out that friends will be up this weekend, and the weather is beautiful. The best part is that our van is working again, and so I’m in my comfortable wheelchair, sitting at a desk by the window, looking out at the sun-covered snow.
I can see skiers coming down the mountain. I have to squint my eyes because at one point I am pretty sure there’s a penguin skiing down. Read More>