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

Staying Aware

Today is the last day of ALS Awareness Month. That doesn’t really matter to me, although I’ve appreciated all of the posts and efforts people have made during the month of May to raise awareness and share their realities of life with ALS.

Tomorrow is June. Am I going to stop raising awareness of ALS and move on to something else? Of course not. This is my thing. After all, what if we only celebrated hotdogs on July 23, which is National Hotdog Day? Would that be fair to hotdogs? The answer is no, it would not. And since we’re asking questions, is hotdog one word? Dictation seems to think so, and I’m too lazy to argue.

May was a good month. I celebrated my seventh Mother’s Day. I survived while Rob and Scarlett went to Arizona. Some of my best friends came to spend a weekend with me. Memorial Day weekend was full of peach picking and pool parties. Otto turned one, and his personality changed not at all. Read More>

|Categories: Cure, Doctors, Drugs, Life | Tags: , , , | Permalink