Monthly Archives: December 2014

Being Quiet

I’m on Day 3 of a Bad Cold. It’s not really that bad, I suppose, but it’s sort of hard to tell when you mix it with ALS. In general, I don’t have a lot of coughing or nose-blowing strength, so when I’m stuffy and congested, things can be uncomfortable. My sore throat keeps me up at night, and that really highlights the fact that I can’t move around and adjust my body very well. A cold is manageable, but those of us with ALS fear getting sick like this. The flu could involve a hospital visit. Pneumonia could be fatal.

But, lucky me, it’s just this head cold. The nicest part is that with Rob on vacation and Scarlett out of school, I’ve just been able to lie in bed and nap all day. Floating in and out of consciousness, I find that I am surprisingly apathetic towards my situation. I was napping yesterday when they went to the park for a few hours, and I vaguely connected to the thought that I was literally stuck in bed, but I didn’t care. I just wanted to be still, to be alone, to be quiet.

I have more and more moments like these, even when I don’t have a cold. Read More>

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

In the Spirit

“You have been my friend,” replied Charlotte. “That in itself is a tremendous thing. I wove my webs for you because I liked you. After all, what’s a life, anyway? We’re born, we live a little while, we die. A spider’s life can’t help being something of a mess, with all this trapping and eating flies. By helping you, perhaps I was trying to lift up my life a trifle. Heaven knows anyone’s life can stand a little of that.”
—Charlotte’s Web by E.B. White

Scarlett and I read Charlotte’s Web together over the course of a few days. I wasn’t sure she’d be into it, but she loved the story of Wilbur, the runty baby pig who was rescued and bottle-fed by a little farm girl, and how he then met a spider who became his best friend and saved his life.

Scarlett was also very interested towards the end of the book, when I burst into tears while reading about Charlotte’s death. She curled up in my lap when it was over, and I could see her trying to squeeze out a few tears, too. But then she said, “I want to go look at the Christmas presents.” Read More>

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

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