There Will Be Blog

Scarlett is home sick today, so I won’t have time to blog intelligently. That is why I decided that Scarlett is going to be today’s guest blogger. But when I said that to her, she screamed NO at the top of her lungs and ran into the garage. So this might take some time.

My plan today was to blog about choices: why it’s good to have them, how we make them, how they empower us. I came up with this idea in the middle of the night when I found myself facing the decision of whether to ignore the discomfort in my legs or wake Rob up to roll me on my side. Lucky for me, after a few minutes of weighing the pros and cons of either choice, I heard Scarlett barreling towards our room, coughing and snorting like a troll with emphysema.

Rob took her back to bed, and when he returned, I casually asked him to flip me over. No biggie. We had about an hour more of silence before the little beast returned. She was taken away again, but it was hard for me to get back to sleep. When she finally showed up at a decent hour, everyone was exhausted, so we just laid there and she coughed in my face for a while. Read More>

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

Car Talk

Yesterday, our van broke. Scarlett had just finished her first gymnastics class, and we were all loaded up and ready to rush back to school, so that I could meet Rob for our parent-teacher conference. Everything seemed fine at first. The ramp folded up, but then the sliding door refused to close. After ten minutes of trying—and growing increasingly late for our meeting—I decided we would just drive with the door partially open.

Scarlett was nervous that the police were going to pull us over, but I was mostly concerned with the constant high-pitched screeching that accompanied us for the four-mile ride. At a stop light, the man in the next car leaned over, and said, “Your door is open.”

“We know,” I nodded, too annoyed by the ringing in my ears to muster up a smile. That was when Scarlett decided to see if she could make the exact noise the car was making. It turned out she could. Read More>

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

More Progression

Nearly four years from the onset of symptoms, my ALS progression continues. It is impossible to ignore. Lifting a fork or a spoon to my mouth is a huge challenge, so much so that I can feel my days of comfortably dining out coming to a halt. Being hungry and struggling to eat is extremely frustrating. Doing it in front of strangers does not add to the fun. I am now a two-handed eater, supporting my right wrist with my left hand, and still spilling often. I swear I used to be a graceful person, but now there’s an earthquake inside of me, shifting and shaking in ways I can’t control.

My fingers feel stronger than my arms in some ways, but then I try to get my contacts out, and it’s basically just an exercise in hope. Hope this works, hope I don’t stab myself in the eye again, hope somebody comes up with something soon to get some strength back in these hands before I have to consider eye surgery on top of everything else.

I’m not opposed to eye surgery. It would certainly make things a lot easier. But maybe I should just wear my glasses. [Immediate flashback to 3rd grade and a giant pair of purple glasses that covered my face. Then braces. My awkward years were extensive. Character building?] Read More>

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