Welcome to ‘The Mermaid Chronic(les)’

Hello, everyone!

My name is Kala, and I’d like to introduce you to the first installment of my column, “The Mermaid Chronic(les).”

Mermaid stories have always been my favorite, whether they’re fairy tales or mythology. I love the wicked ones and the sweet ones. In almost every story, the mermaid must lose something to live on land. I understand the sentiment a bit. While they lose only one ability, I lose abilities like clockwork. Well, clockwork according to spinal muscular atrophy.

The ability to sit up by myself? Gone.

The ability to feed myself? Gone.

I’ll possibly even lose my voice, eventually.

I’ve also always liked the ideas of having a tail and luring sailors.

I’m kidding … sort of.

What can I say? Who doesn’t want to leave adulthood behind to be a mythological creature? You know, one without responsibilities?

I was diagnosed with SMA type 2 when I was 11 months old. Doctors didn’t think I would live past 3 years. But in April, I turn 22. That is 7.3 times longer than my original “expiration date.” Maybe I am some sort of immortal mermaid?

I’ve accomplished quite a bit up to this point. Throughout high school, I knew that I wanted to be an author. So, right after I graduated, I started working my butt off. And I did quite a lot of gigs for free. This year, however, I can say that I am an author. In January, I published my first poetry collection, titled “Witchcraft and Monsters.” Last year, I was one of several authors who participated in writing a multiauthored short story.

I’m almost always working on my next writing project. (Currently, it’s a young adult fantasy retelling.) I’m also an editor, which isn’t something I would have guessed I’d be doing. But I love it because I’ve always loved reading. Plus, editing someone else’s work is a good break from my own. Now I can happily say I write for SMA News Today.

You know, I never really thought those accomplishments were a lot. Now that I have it listed out, it’s quite a bit.

I think it’s important for us to dream big. To have life goals. Big goals and little goals — five-year, 10-year, and 20-year goals. And even “sometime before I kick the bucket goals.”

My next goal? I want to attempt to become traditionally published.

Well that, and figure out my next tattoo.

Tune in on Tuesdays at 9 a.m., CST, to learn the latest updates on my life with SMA and the topics related to it. See you soon!

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.