Category Archives: Venting

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

Fake Conversations

From time to time, I allow myself to engage in imaginary conversations with people I see on the street. These conversations have no basis in reality, but they arise from an experience I have pretty regularly.

Scarlett and I wheel past a mom, carrying a baby or walking alongside a small kid, and she smiles warmly at us, but in that brief moment, I imagine all the things she might be thinking. Most likely, I tell myself, she is feeling a mixture of pity, curiosity, and uncertainty as to how one can possibly perform the functions of motherhood from the confines of a wheelchair.

I admit, I am—so far—not a mind reader. Maybe that other mom is just thinking about what to make for dinner. But there is something in those discreetly inquisitive eyes that lets me know she thinks the job is hard enough without the added layer of a disability. And if that is what she’s thinking, she definitely has a point. Read More>

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