Monthly Archives: June 2016

Hands On

I have bright purple nails. They will last for at least three weeks, and probably longer. It’s just regular nail polish, not the gel or no-chip kind that is supposed to withstand the tsunami of running a household. I don’t need that kind anymore. When I used to wear regular nail polish, it would chip within two days, helped along by my fluttering fingers that were always in motion. But now, it lasts forever. I don’t cook, I don’t clean, I don’t bathe my child or wash my own hair. I don’t even have the energy to pick at the polish the way I used to, and so my hands always look nice now, my skin soft, the nails short and square. Thanks, ALS.

Sometimes it’s nice to have other people do things for you. I’ve always liked getting my nails done, as opposed to doing them myself. And I’ve never cut my own hair… Wait, I take that back, I did once cut my own hair in my early 20s by putting it in a ponytail and lopping off the tail part. That was pretty satisfying in an I’m going to regret this later kind of way.

But there’s lots of self care that’s just better to do yourself. Flossing, for example. I know I should consider myself lucky that I have an assistant who is willing to floss my teeth, and I do. But still. Read More>

Tossing Corn

My friend Corey Reich has been living with ALS for nine years. Corey’s symptoms started when he was away at college, and he recently turned 30, a milestone he said he wasn’t expecting to meet.

I was introduced to Corey through our doctor, who told me that this was a family I should get to know. He was absolutely right. The funny thing is, neither Corey nor I ever go to an ALS clinic anymore (a topic for a future blog), but our families still get together every few months. Corey is an Oakland A’s fan, a tennis coach, and a lover of good food. He and his family are awesome, and they should get to be together for a long time. Read More>

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>