When I was diagnosed with spinal muscular atrophy (SMA) at 11 months old, there was no cure or treatment. Vitamins, physical therapy, and respiratory exercises were used in the hope of slowing disease progression and maintaining physical abilities rather than improve health. Five…
The Mermaid Chronic(les)
— Kala Godin
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.
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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…
“You’re so vulnerable! How are you OK with that? It’s such an open way to live life. It’s beautiful.” Oh boy. Firstly, this is a weird thing for someone to say. I don’t know how to respond to it. So, my response often…
I’m a writer. I recently finished the first draft of a 47,000-word novel by hand because I can still write manually — and if you don’t use it, you lose it. And now I’m writing another book. By hand, again. In…
Second in a series. Read part one. No one really expected me to have a job. My advisors in high school didn’t like my career choice. I wanted to pursue being a writer. I wasn’t going to college. No, thank you, I’d had…
First in a series. School can be a special kind of hell when you’re the awkward kid in a wheelchair. You attend normal classes, but you don’t look normal. And then the kids find out you’re smart. Too smart; a smart***.
The A in SMA stands for “atrophy.” Atrophy means “to waste away.” My muscles are wasting away, and that can cause a lot of other problems. Scoliosis? Check. I had corrective surgery for this when I was 7. Osteoporosis? Yup. Healthy…
In January, I self-published my debut collection of poetry titled “Witchcraft and Monsters.” In case you think that being an author is a “very chill job” (many believe it is not a job at all), I’m here to tell you that it is not. Yes, 95 percent…
Recently, I had a full day of appointments in the city. It takes two and a half hours to travel there, and leaving my house for that long is a challenge. Days like these make me miss when all my doctors were at the children’s hospital.
Wicca kind of fell into my lap when I was about 12. Or maybe I fell into its lap. Who really knows with these things? I’ve always been what I’d consider a “Halloween girl.” Someone a bit more spooky and ethereal than I actually…
Spinal muscular atrophy (SMA) can cause a lot of things, including muscle weakness, fatigue, and pain. It’s different for everyone. It also changes. One of the best side effects of my life with SMA is that I’ve been able to exercise my adaptability and my creativity. For me, the…
We’ve all had some cruddy parking experiences. But when you have a disability, it’s usually a little more complicated. The difficulties typically occur due to other people parking. Sometimes, the problem is the parking spot. My current van is a side-entry model with a manual fold-down ramp. It’s similar…
People often assume that disability prevents someone from being physically able to express themselves. Especially in the form of body modifications. They would be wrong. One of my favorite forms of artistic expression is body modifications, specifically tattoos. They’re my favorite! I started dyeing my hair in sixth grade. Since…
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