Category Archives: Life

Speed4Vivian

Today I added a new Face of ALS to the site. I hate doing that, hate that there are new faces of ALS, all day every day. But I am also incredibly grateful when people want to share their personal stories. It’s the most important thing we can do to continue the focus on this disease and how it is affecting lives.

There are no good stories of people getting ALS, but Vivian Connell’s seems notable in its irony. She went back to school in her 40s so that she could launch a second career and continue her good work in the world. (I don’t have an advanced degree, but word on the street is that this kind of endeavor can be pricey.) Vivian was diagnosed with ALS less than a year after graduation. Yet, as you’ll read, she has not let it define or deter her. She is an excellent example for her two teenagers and for the rest of us.

You can read Vivian’s story here, Read More>

|Categories: Diagnosis, Life | Tags: , | Permalink

The Good, The Bad, and Everything Else

Some days, when I sit down to write this blog, I struggle with what tone to convey. I want it to be realistic, but not too negative. Optimistic, but not phony. Ultimately, I want to make sure that what I say is true. But throughout any given day, there are so many truths, and they all have moods that go along with them.

I now have to use a fist to punch the microwave open. I rarely bother doing this, but in a pinch, it does work. My fingers get tired of typing, and today I tried using my knuckles instead (not recommended.) I sometimes open the refrigerator, see what I want, and know that there is absolutely no way I can get it.

That’s all on the downer side of things. It’s true that I am feeling more paralyzed lately. It’s a word I used to use figuratively—unable to make a decision, rooted to one spot in fear. Now, it’s really quite literal. My arms are heavy, and lifting them requires an energy that I once reserved for gym visits or moving day. Read More>

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

Into the Vile

Scarlett had soccer on Sunday afternoon. She and Rob took a trip to a sporting goods store in advance, so she was all decked out in Adidas, including an A.C. Milan jersey. This was fitting, because her soccer class was organized through her preschool, and taught entirely in Italian. It was also fitting because the shirt fit. Haha! #winningatpuns

Sorry about that. I’m not editing it out, though.

With the epic rain we’ve had here in California this month (the phrase “Storm of the Decade” was bandied about last week), the soccer fields were still wet, and extremely messy. I basically ignored this fact, and cruised through the grass in my chair to join the other parents on the sidelines. It was Scarlett’s first class, and I wanted to be right there, even if it did turn me into the abominable mud monster. Read More>

|Categories: Life, Parenting | Tags: , , , | Permalink