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In life with SMA, I’ve learned to go with the flow

Life doesn’t always flow the way it’s supposed to, and by “flow,” I mean literally. I’ve recently been experiencing a lot of issues with my nasojejunal (NJ) tube. It’s become more difficult to place each time it needs to be exchanged. It clogs much more easily than…

Which straw reigns supreme? A semi-definitive ranking

Who would’ve thought that something as mundane as straws could become a hot topic? Yet in recent years, they’ve been featured in countless news stories, sparked debate, and been targeted by well-meaning environmental movements. I like to think I know a few things about straws. I’ve been utilizing them daily…

COVID-19 kept me from saying goodbye to my grandmother

Sobbing a blubbery and snotty cry while waiting for an elevator was likely my rock-bottom moment in January. I’d just left the interventional radiology department after another stressful procedure at the hospital. Thankfully, it went as easily as it could have, given the difficult situation. But something…

Sleeping problems are another part of the SMA package

The 2021 Netflix movie “Awake” imagines a world in which a mysterious catastrophe wipes out all electronics and takes away humanity’s ability to sleep. Mass hysteria ensues within hours of this apocalyptic event, as people long to let their minds and bodies rest. Citizens turn against one another,…

Switching wheelchairs was more painful than I expected

“It won’t be this way forever, right?” This has become a sort of refrain for my dad and me over the past couple of years. Whenever we’re overwhelmed, we turn to each other and ask for confirmation. Whatever we’re struggling with in the moment, whatever has us down for the…

Virtual Assistants Can Offer Independence but Not Privacy

Have you ever felt like there could be someone spying on you by listening to your private conversations? Well, perhaps that sensation is being caused by your virtual assistant. Yes, I’m talking about those helpful little devices that sit on the corner of the table or dwell in your smartphone’s…