Category Archives: Progression

Time That You Love

By now, many of you are wondering if I’ve taken a serious turn for the worst. Or is it worse? I’m never sure about that, and I don’t feel like looking it up. It’s true that my body continues to weaken, and it’s getting harder to breathe. My speaking voice is really quiet, which means that Otto just laughs at me when I tell him not to do things (he openly mocked me by eating my peanut butter sandwich off the counter last week while I looked on, and later he acted all innocent like he just hadn’t heard me telling him no. I hope he gets diarrhea.)

My intention was to blog twice a week when I started in 2014. Now my intention is to blog today, and we’ll just see what happens after that. Summer was good, although as usual it went by so quickly that I feel like I went to sleep in June and woke up in September. Scarlett got prescription glasses and went to her first sleep away camp for one week. The glasses are already broken. I mean, did I really even need to say that? We didn’t even send them to camp with her, because it’s not like we’re amateurs here. But we did think she should wear them to school, and clearly that is where we went wrong.

Sleep away camp was a great success, and when we picked her up she informed us that Read More>

Learning to Fly

It’s been pretty well established on this blog that I spend most of my time sitting. That’s been true for about four years now, and as you may have read in any number of reputable publications, sitting all the time brings with it many health complications. Let me be more clear: I have a hemorrhoid. I apologize to those who feel this is too much information, but my little bottom feeder and I have been together for a while, and I named him yesterday so I thought I should introduce him. Not visually, don’t worry.

His name is Vance.

Web MD says that hemorrhoids are swollen veins, and that entire sentence makes me want to throw up. I think I just object to the words swollen and vein in such close proximity (both to me and to each other). Right about now, I’m guessing that those of you who were thinking I wonder when Sarah will write a new blog post are instead thinking Wow, I wish Sarah had kept this one to herself. But I simply couldn’t keep the wonder that is Vance from gracing the electronic pages that will live on after I’m gone. Read More>

The Shining

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>