Kala is a 22-year-old woman living in Alberta, Canada. She was diagnosed with SMA Type II at 11 months old. She is a columnist, author, and editor. In her weekly column, “The Mermaid Chronic(les),” she discusses life with SMA: from her daily life to the expectation of others. No matter the topic, she tries to keep things silly and sarcastic.Let’s talk about New Year’s resolutions. For the most part, I already live the way I want to and don’t feel the need to set any new goals, so I end up with the same “resolutions” every year: Try to not get pneumonia: This is…
There are only a couple of weeks left in the year and although I’m excited for Christmas, I’m also ready for this year to end. Let’s bring back the Roaring Twenties, shall we? But instead of roaring, maybe a long nap would be better.
A few columns ago, I wrote that I no longer was pursuing Spinraza (nusinersen). I still have no qualms about that decision, because we have a number of potential treatments that are slowly making their way to FDA approval, including risdiplam.
At the beginning of November, I got sick. It was inevitable, though I had received a flu shot and we were careful. Sometimes you just get a little unlucky. Usually when this happens, I give it a couple of days to see how I’m doing. If…
Everything in our lives is difficult, from the things we need to do to survive to the things that we love to do. That doesn’t mean we live a bad life. I’ve been reading some columns on SMA News Today recently for inspiration and…
One would think it might be easier to get a lifesaving medication, but it’s not. I pursued Spinraza (nusinersen) for a time, only to stop. I’ve been keeping quiet about it because what if I don’t get it? It’s possible, even though I…
Progression is an odd thing. I find it difficult to measure the progress I’ve made in life. People my age, people I went to school with, are getting married, having babies, and buying homes. But my progression has always looked different.
Wow, October feels like it was just yesterday. But it also felt like it took 45 years to end. What even is time? My book signing was on Oct. 2. I thought I should probably update you now that it’s November. Holy heck, it’s been a whole…
I looked up the definition of “minority group” the other day, and it was defined as “a group that is different racially, politically, etc., from a larger group of which it is a part.” I was prompted to think about the term…
For this week’s column, I’m going with something more lighthearted: existential dread. I’m kidding. My last couple of columns have been a little dreary in nature. Sometimes that’s what life throws at you. How about we talk about fall and Halloween? Because I’ve been…
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