Category Archives: Progression

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>

|Categories: Age, Cure, Drugs, Faces, Life, Progression, Research, Vanity, Venting | 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