Category Archives: Relationships

Shady

It’s been a hard week. Rob was traveling, Scarlett was finishing kindergarten, and I have just been trying to manage all of the moving parts of our lives—not so successfully. Every two weeks I meet with a social worker, and today I told her that I felt like writing an angry blog. “I wouldn’t want to post it, though,” I said.

“Well,” she began thoughtfully. “Couldn’t you write it, and just not post it?”

There was a time in my life when I wrote many things that were never intended for public consumption, but now that it is so difficult to get words on the page, I don’t want to waste my energy dictating and correcting something only to delete it. So instead, I’ll share some things that I’m uncomfortable sharing, since I took the time to write them down. Read More>

Driven

I’m excited to be featured today at Driven for Women! Thanks to Mala Reddy for the introduction and Morgan Brasfield for including me among the incredible women she profiles.

A Day in the Life

Sometimes I think that people wonder what I do all day. I mainly think this when they ask “so what do you do all day?” No one is saying it in a challenging way, they just seem genuinely curious about how I kill spend my time. So I thought I would share a day in the life of me with ALS.

Monday

6am: Rob leaves for Chicago, and my assistant Marianela arrives. Otto is let outside. I’m awake, but exhausted. I decide to stay in bed longer even though it’s totally uncomfortable.

6:45: It was a good effort, but I can’t ignore the pain in my back and my feet anymore, so I call for Marianela. She lifts my head and my legs and swings me to the edge of the bed. Then she picks me up and puts me in my chair. I wheel to the bathroom, where she gives me my medication and puts my contacts in for me. We are trying to be quiet because, after a big weekend in Arizona, Scarlett is still sleeping.

7:15: Scarlett wakes up. She gets dressed, and I try to convince her to have breakfast. She eats three pieces of cereal. Read More>