Category Archives: Life

Late to the Party

I am not an early adopter. Definitely not a trend setter. Take for example, my realization in 2005 that leggings were becoming popular once again. I was horrified. “Well, I can’t wear those,” I told my friend Wendie, who had broken the news. Of course, several years after everyone started wearing leggings again, I joined the crowd. And now leggings are the best thing ever, not that I can wear them, because it would require getting stuffed in and out of them multiple times a day.

Further evidence that I will never ride the leading spiral of a trending wave: I have not yet and probably never will embrace the phrase “hot mess.”

This is not merely a style issue. It very much pertains to my approach to life with ALS. I basically wait until I desperately need an assistive device before ordering said device. I was so terrified to be wheelchair-bound, that I used a walker for far longer than I should have. It wasn’t until I started falling even with the walker, and my mobility decreased to almost nothing, the long hallway of our apartment enough to leave my legs shaking and ineffectual, that I pulled the trigger on the wheelchair. And the day that it arrived: Freedom. Read More>

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Apples for ALS

About a month ago, Rob, Scarlett, and I were headed over the Golden Gate Bridge in our glamorous silver mobility van. Alcatraz Island sat to our right, and city views rose behind us, but I always prefer to look left, out at the ocean and the world that never seems to end. I was singing along with my Napster playlist, which was streaming The Lumineers. I love to sing in the car, even though my voice is now much softer than it used to be, but my singing served another purpose as well, to regulate my breathing. We were headed to a friend’s apple farm in Sebastopol for the day, and although we had brought my BiPAP with us, I was hoping not to use it. I have no idea if the singing actually helps in any way, except perhaps to irritate Rob, which is good enough for me. Just kidding, he loves it when I sing (I tell myself regularly.)

The apple farm is owned and run by the family of one of Scarlett’s classmates. We visited for the first time last fall, a trip that was special in a lot of ways, but in particular because the house had previously been owned by a woman whose husband had ALS. That means the home is entirely accessible, and that’s not something we encounter very often.

There are 39 families in Scarlett’s first grade class, and everyone was invited up to the farm Read More>

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Regressions

Have you ever seen one of those lists of reasons why a toddler is having trouble going to sleep? I’m too lazy to look for one at the moment for direct quotes, but they include things like:

27. Toddler’s shirt is touching toddler.

42. Earth’s rotation is causing toddler to feel hungry, are there any bagels?

8. Toddler feels like dancing.

15. Toddler’s bed is scratching toddler. Toddler requires new bed immediately, yes yours will do just fine.

Those lists have always made me laugh, because having raised a toddler, I know much of this to be true. But I suddenly have a new appreciation for the plight of the small and somewhat helpless. When Rob puts me to bed at night, he settles me on my back, putting pillows under my elbows and one across my chest that my arms can wrap around. He fastens braces on my feet, and sets them against wedges that lean against a wooden chair which is kept in place by a leather ottoman. He stretches my legs and my arms and places my mask on my face. It’s a little more involved than our long ago life in Manhattan, when I would get up from the couch at bedtime and announce that I was going to bed. And then I would do that. Read More>

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