Monthly Archives: April 2015

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>

Hands Off

Scarlett was playing her keyboard yesterday, which usually just means pressing a button and dancing to a string of prerecorded songs that make me want to drive my wheelchair directly over the instrument after about ten minutes. But this time, she brought some more creativity to her musical endeavors.

“Mom, listen,” she said to me. “The duck is fighting with the bird.” She pressed the lowest key and the highest key, creating the sounds of two loud animals becoming increasingly annoyed with each other.

“What are they fighting about?” I asked.

“Food.”

Then the coyote was fighting with the woodpecker. Or something like that. There were a few more battles.

“AND NOW ALL THE ANIMALS ARE FIGHTING!” she screamed, throwing her body across all the keys. Cacophony. Read More>

The Bridge

Drive over the Bay Bridge, eastbound, meaning out of San Francisco. The second half of the bridge is all new construction, white and clean and nothing special, except for those killer views of the water. But look to the right and you can see the skeletal remains of the former Bay Bridge, the one I knew so well, the one that used to be strong, but is being disassembled. Ripped down.

Watch it as you leave the city, and think about how much it carried. All those people, all those stories. Yeah, yeah, yeah, you’re safer on the new bridge, but doesn’t it make you a little sad to see something so important coming apart? Look closely, while you can. It’s a ghost town. It’s an entry in a history book.

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At the beginning of 2005, I moved from Berkeley to San Francisco. I worked in the East Bay, which meant a daily commute over the Bay Bridge. Getting to work was easy, a reverse route that took me past rows of frustrated drivers, making their way slowly into the city, while I breezed along, blasting music and sipping coffee.

After work, I got in my car to go home, and that was the best part of the day. Getting on the bridge, realizing I lived in this amazing city, watching the buildings appear in front of me. Coit Tower, Alcatraz, the triangle-topped Transamerica Pyramid, Sutro Tower. The Bay, just rippling along, catching whatever light bounced off the city. Read More>