Category Archives: Life

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>

|Categories: Age, Cure, Faces, Life, Relationships, Research | Tags: , , , , , , | Permalink

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>

|Categories: Life, Parenting, Progression, Relationships, Venting | Tags: , , , | Permalink

Living with ALS, Laughing Anyway

Today I read a short piece of fiction by Langston Hughes, and so of course now I feel like I can’t write anything.

“…the laughter bounced, like very hard rubber balls, around the room, not like tennis balls, but like solid hard rubber balls, and Marcel laughed, too.”

That’s so good. The sentence is almost tactile, I feel that I could be hit by that rough laughter, or that maybe I could catch it in my hands, turning it over and over and studying it.

I’m here today, but I’m under several layers of fog. I haven’t been sleeping well, and last night, I found myself shivering so hard I thought that I would seize up. My teeth were chattering as if I was in a cartoon. Rob covered me with another blanket, but I kept waking up, feeling hot and trapped. This morning, I was so tired, and my weakness was so pronounced, that I thought well, we can’t ever let that happen again. As if I even know what the problem was.

And so today, everything feels difficult. My tongue is slow in my mouth and breathing is like ducking my face into swamp water. When I laugh, it does not bounce like hard rubber balls. It sounds like silence, and lands like cotton balls. But I did laugh, earlier, when I was on the phone with my sister. I could feel the laughter in my neck and my chest, trying to get out normally, not quite succeeding. Read More>

|Categories: Life, Progression, Vanity | Tags: , , , | Permalink