The Diva, The Disability, and The Unforeseen Drinking Game: A Story of Self-Acceptance

By Glow Rivera-Casanova

Glorianne Rivera-Casanova also known as "Glow," takes you on a journey through her SMA diagnosis to design school. Her book encompasses years of self-reflection and realizations. She paints her story of acceptance through a fictitious, idealistic entity of whom she's named the Walking Diva. Growing up, the Walking Diva was everything Glow though

• Language: English
• Publisher: Palmetto Publishing Group
• Release date: Jun 29, 2020
• ISBN: 9781641121910

Book preview

CHAPTER 1:

The Beginning

I

remember having a rag doll with roller skates, and I liked it simply because she had wheels and I had wheels! She had polka-dot tights that were orange and white, and a purple skirt with a green top. The wheels were purple, and the skates were gray. These were one of the few distinct memories of my toddler years.

Now that I think about it, there was also that time when I was eating a random strawberry-glazed donut with chocolate sprinkles—you know, like the perfect doughnut—as my thigh was being cut open during a biopsy diagnosis.

Wait, let me pause myself. You're supposed to start a story from the beginning. I'm guessing the beginning of this story would be my childhood, in this lifetime at least. I don't know how many times I'm going to start a sentence in this book with, I'm not gonna lie, but it might make a good drinking game—and it is, after all, a true story, so bottoms up! I'm not gonna lie: these memories may or may not have been distorted by the fact I was an infant, and my mother may or may not have suppressed some of the traumatic aspects. Nonetheless, I know you basic-ass bitches wanna know the diagnosis story—even though most of the SMA type II babies born before the 2000s have a similar, if not identical, story.

I was diagnosed with spinal muscular atrophy type II when I was, ironically, two years old. My mother thought that I was too good of a baby. I was the third child, and apparently, the other two were animals. This is why, when this chubby, big-eyed angel came into her life all quiet and subdued, she knew that shit wasn't right. The suspicion was quickly followed by the fact that I did not crawl. I would get on all fours, take two steps, and then wobble and tumble sideways. If I owe my life to anyone, it's my mother. I can't let her know that, though, so let's keep it under wraps.

The internet was just starting to be a thing, so resources and information were minimal. My mom made my dad buy her a computer so she could research about me. I imagine the AOL dial-up icon beeping and tweeting and her waiting to find the answers. She did a shit ton of research on her own. I owe her a lot for that. I can imagine how frustrating it must have been for my parents. They knew something was off, but there wasn't enough information out there to give it a name. Doctors kept telling my mom that there was nothing wrong with me, and she was like, You're such a moron. I mean, the ovaries on this woman. She's made doctors at John Hopkins cry.

When I was two, I was sent to New York to get a biopsy, and the only memory I have of it is taking a shit in my grandfather's arms in the Empire State Building. A muscle biopsy is a surgical procedure used to diagnose my condition. Basically, it's a three-inch incision where a small section of muscle from the upper thigh is removed. I now have a cute scar on my right thigh that I take pride in.

This was followed by months of arguing with doctors since they didn't want to give me the equipment that I clearly needed. After surpassing their rejections, we moved on to the medical insurance companies, because, apparently, life was already too easy. Since it wasn't in the books, neither party wanted to give me the equipment.

My parents were trailblazers. I received my first motorized wheelchair when I was two, quickly after the diagnosis. They didn't want to give it to me for exactly that reason: because I was two. The doctors had me wear a body brace for scoliosis, saying it wouldn't fix it, so why give it to me? In reality it wasn't about fixing me; it was about preventing the worst. (By the way, these are now all elements of the SMA starter kit.)

I don't blame my parents for deleting half of my childhood; I can assume it was very traumatic. All of these delays of resources and information led me to be hospitalized every other week until I was six. I've spent birthdays in hospitals. I've spent Christmases in hospitals. I've spent hurricanes in—yes, you guessed it—hospitals. I knew the nurses by name. I remember leaving the hospital and them yelling, Goodbye! I love you! I hope I never see you again!

This is why my parents took every free moment they had and tried to live it to the fullest. Because, for all they knew, tomorrow could've meant a hellish drive to the hospital. There's one particular story that my mom and dad love to tell me. As the story goes, when I was around four, we were taking a family trip to the Rose Festival, which was in God knows what town in Puerto Rico, and was God knows how far away. In some versions of the story, we got lost. It was the day before the Fourth of July, and we were all having heatstroke; my dad likes to point out how very big and rosy my cheeks were at the time (he says that I no longer have cheeks). And as we were driving past the airport, my parents had the most spontaneous, Super Bowl–winning idea that they've ever had: We're going to Disney World!

So there we were—with a very low stock of diapers and no medical equipment, just a stroller, two bottles, and three pacifiers. I was in a baby-pink motorized chair at the time. Based on the fact that this story has been told by word of mouth, I don't know all the details, but I'm sure the chaotic journey through the airport must have been filmworthy. Cut to Florida: the whole Rivera family