My assistant, Juan, arrives at 8:30am. He helps me to the bathroom, and as he walks away, I can hear him singing a song in Spanish. He played a soccer game the night before, he tells me, when I am back in my chair. He wants to know how my night was, and then he settles in to do dishes. I drink my tea and consider, once again, what it means to have people helping me. I’m reminded of a guest post I wrote on my friend Richard‘s blog. Re-reading it, I realize it is exactly 9 months old. My ALS has progressed, but some things haven’t changed.

In June 2014, when I first wrote about needing help, I was struggling with how to handle my growing dependence gracefully. I still am. Sometimes when Juan or my other assistant, Rochelle, are here to help me, I just wish I could be alone. They are so kind, professional, helpful. But the only help I really want is from someone who can give me back my motor neurons.

Juan takes me to school to pick up Scarlett. He parks around the corner, because when we take a spot directly in front of the building, we have found that the van—with its irresistible ramp—quickly becomes full of preschoolers. They run in and out as parents try to corral them, and the last time it happened, they found a bunch of styrofoam pieces on the sidewalk and brought them into the van, so it could “snow.” I’m pretty sure my own child was the ringleader on that one. Read More>