Category Archives: Progression

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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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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Air Apparent

My BiPAP is a source of great comfort for me. I hate that this is true, but at this point, it is only on my BiPAP that I can sleep. So when I get on it during the day, as I often do when a caregiver is on a lunch break, I tend to doze off in my wheelchair like an old man in front of the TV after a long day at work. I miss crawling into bed and arranging my head on the pillow, lying on my side, stretching out my arms. Sleeping is so different these days.

Sometimes I don’t even realize how tired I am. But I don’t get very good sleep at night, even if I’m not asking for help adjusting my body. I often lie awake thinking about the things I need to do (and trying not to add Drink Water or Go To The Bathroom to that list.) In the morning, I’m up early to help Scarlett get ready for school, or at least to encourage her via various versions of threat/reward/eventual apathy.

After she leaves, I try to get things done. It’s increasingly difficult. I’d love to sit down and write, but I don’t really have the energy. Or the time, because I am also working on taxes, her birthday party, an assignment I took on for the school auction, and general communication with friends and family who care enough to reach out and check on me, leaving me feeling happily obligated to reply in a timely manner. I only sometimes succeed, but when I do spend the morning emailing and texting, it zaps my energy for hours.

Which leads me to my time on the BiPAP. I might bring my phone with me to listen to music or podcasts, or I might bring my iPad so I can read a book, but inevitably, I will lean back and my eyes will close, as my body realizes that is finally finally breathing correctly again, and I can truly relax. I can’t believe this is real, that for the greater part of each day I am not getting enough air. I’m doing fine, and I manage it all with medication, including  my important nightly wine regimen Read More>

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