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.
Tough Talk
Update 5/24 : I spoke with the mom who is referenced in this story about what happened. She is a friend, and a lovely person, and I don’t fault her for this. Kids say what they say–my own included! My purpose in telling this story wasn’t to demonize anyone, but just to share another ALS experience.
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The little girl was asking me a question, but I couldn’t hear her over the noise of the playground. I leaned around Scarlett’s head and asked the girl–a 6-year-old who lives in our neighborhood–to repeat herself, but it took a few tries before her question was audible. When I could finally understand what she was saying–and she was speaking pretty loudly by that point–what I heard was “Does Scarlett know that you’re going to die soon?”
There are a lot of possible answers to that question, but the first thing that came out of my mouth was “Oh honey, I’m not going to die soon.”
She persisted. “My mom says that you’re going to die soon.”
“Well,” I said firmly. “I’m not.” And then I must have said something else, but I absolutely don’t know what it was, and suddenly we were wheeling off to another section of the park. Read More>
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>