My life flashed before my eyes. Or, to be more specific, all the meals I’ve eaten in my life flashed before my eyes. I’d determined with complete certainty that I was lactose intolerant. My symptoms aligned perfectly — namely, I experienced gastrointestinal issues after ingesting dairy products. I’d finally identified…
I tend to attract attention while out in public. It’s not really because I behave in a way that draws attention. It’s just that people in wheelchairs toting a menagerie of medical equipment and an entourage are highly noticeable, whether we want to be or not. Ironically, we stand out…
Does anybody actually like the sound of their own voice? Unless you’re a gifted singer, that was a rhetorical question. I come from a musically inclined family, so they tend to say yes when I ask this question. But for me and many of those outside my family, the answer…
Today I want to talk about something very special to my heart: setting goals; and not just for 2023, but also 2024 and 2025. Creating future goals excites me and gives me hope during life’s many storms. I hope you’ll get excited with me. Have you ever worked on…
Since billionaire Elon Musk bought Twitter in late October, I’ve stumbled into the role of being my family’s resident reporter about all things related to the site. It started when Musk gutted entire essential teams with a mass layoff. Then a new verification system allowed people to impersonate public…
With all due gravity, I informed the group chat about my latest hypothesis. “I think I might be lactose intolerant.” “NO,” said one friend. “NOOOOO,” said another. I explained that I’d been experiencing some strange symptoms around dinnertime. Initially, I assumed it had something to do with Evrysdi (risdiplam),…
After high school graduation, I studied abroad through the American Institute for Foreign Study. Based in Oxford, England, our group attended classes at Balliol College and enjoyed side trips to London, Paris, Rome, and Florence, Italy. From shrimp scampi at the Mitre Inn, to rolling hills, rosy cheeks,…
It was about a week and a half into the “Dad has COVID-19” saga. Mom and I were surviving in every sense of the term. We’re all introverts, and we all hate change. So you can imagine how very unhappy we all were. We were safe and our basic…
It takes a lot to manage daily life with SMA. From the mundane to the extraordinary, everything I do — although it takes much more than just myself — requires a practiced juggling act consisting of medications, specialists, assistive technology, medical equipment, appointments, adequate rest, and helping hands. One…
I did something that I’m afraid to publicly admit. Sure, I did it willingly. And in this corner of the internet, I share my life openly and honestly with those who are willing to read it. So it only seems fair that, despite my hesitancy to share this with you,…
Get regular updates to your inbox.