It’s summertime, and that means holidays, road trips, camping, and hotels. Also, sunburns, mosquitoes, and probably dehydration. I’m kidding about the dehydration. My mom makes sure that I drink more water than she does. I’m mostly content to be in the house with the blessed air…
The Mermaid Chronic(les) - a Column by Kala Godin
I have to start preparing for the plastic apocalypse. Yes, I may just have to start hoarding plastic bendy straws and forks. And also hopefully never get caught with them. (She says to the entire internet.) Or ever run out. I get it: We want to be eco-friendly. Save the…
My life is full of medical appointments, and they all tend to be fairly inconvenient. Necessary, but inconvenient. I can’t attend them on my own because, well, I can’t drive or take care of myself. So, my mom ends up having to take a day off work…
SMA comes with a lot of challenges. The progression of the disease is the worst — at least, in my experience. About a year to 18 months ago, I finally had to accept the fact that I just couldn’t drive my electric chair anymore. Honestly, I probably shouldn’t have…
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…
“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…
