This week three of my close friends with ALS were in the hospital dealing with ventilators, pneumonia, feeding tubes, diaphragm pacers. Yesterday, a man I did not know personally passed away from this rotten disease, leaving behind a young daughter. My mood as I write this can best be described as low, with a side of resignation. This isn’t even close to Bad Attitude. It’s just the reaction you might have if you are hit again and again with the kind of surreality that comes with living in the world of ALS.

I extend my deepest sympathy to the family of Louis DiGiacomo, who was way too young when he died in the morning on November 19, 2014. 32 years old. All of the words that follow are about me and my experience, because that’s what I know. But my thoughts right now are with Louis and his family.

When I was first diagnosed with ALS, I could still walk. I was scared—very scared—by what I was learning about the disease, but it hadn’t truly started affecting my life and my autonomy. I drove myself to doctor appointments and walked down the long hospital hallways. On the day my nephew was born, I was able to rush to my sister’s house first thing in the morning while the rest of my household slept. Scarlett and I still went to parks and out for pancakes after her morning swim lessons. Read More>