I was born at the tail end of the ’80s in Shreveport, Louisiana—the third largest city in the state. Just eleven months before my arrival, the Cedar Grove Riots exploded across the city, throwing Shreveport into the national spotlight amid intense racial unrest. It was a wild time to come into the world.

My birthday, July 31st, falls on Lughnasadh , one of the eight sabbats celebrated by witches and pagans. It’s a time of harvest, of transition—a fitting day for a strange little being like me to enter the world. But that wasn’t the only auspicious part of my birth: I was also born with a rare genetic disorder called X-Linked Hypophosphatemia (XLH), also known as X-Linked Rickets.

To give you a sense of just how rare it is: based on the current world population, only 0.0014% to 0.005% of people live with XLH. That makes me a bit of a unicorn.

When I was around a year old, maybe a little older, fate stepped in through a chance encounter. My mom and grandma were checking out at a local grocery store with me in the shopping cart. An older man noticed my bowed legs and stopped them, telling them about a hospital that might be able to help—Shriners Hospital. He was a Shriner himself and offered to sponsor my treatment.

That one moment changed my life.

Thanks to him, I began a 14-year journey at Shriners Hospital. Every few months, I was tested, examined, and observed by teams of doctors—some of whom had never encountered a patient with XLH before. They always treated me with dignity and kindness. Despite my diagnosis, my early childhood wasn’t that different from other kids’. I wore leg braces for the first five years of my life, took horse-sized pills to maintain my phosphorus and vitamin D levels, and even played sports (though I absolutely loathed them). After one season of flag football and soccer, my biological dad wisely accepted that sports weren’t for me, and I was never forced to play again.

Still, XLH made itself known. The leg pain, especially at night, was unbearable at times—worse than any pain I’ve felt after surgeries. On those nights, I wouldn’t sleep at all.

In my late teens—around 18 or 19—I started noticing that when I stood up from a chair, I had to pause before I could move. My hips and legs just wouldn’t cooperate right away. It crept up slowly, but it was clear that something had shifted.

By my mid-to-late twenties, I underwent two back-to-back surgeries. Afterward, I received zero guidance from doctors or the hospital about what to expect in recovery. My body never returned to how it was. I lost the ability to sense when I was going to have a bowel movement until the moment before it happened—and often, I couldn’t control it at all. Even when I tried, the abdominal pressure just made things worse.

That broke me. I sank into a deep depression. I stopped leaving the house altogether, terrified of having an accident in public. It felt safer to withdraw than to risk the shame.

Around that same time, I started experiencing muscle weakness and lost the ability to maintain my balance. I relied on a cane for a few years, until a hernia repair surgery in 2017 triggered an even steeper decline. After that, I couldn’t sit up for long, and walking with a cane became impossible. That’s when I started using a wheelchair full-time.

Today I found myself reflecting on how differently people treat me now that my disability is visible. Before the decline, I moved through the world without questions. But now? I get asked, “Why are you in a wheelchair?” or told, “You’re too young to be like this!”—as if disability has an age limit. As if kids don’t use wheelchairs too. It's ignorance, plain and simple.

And the comments don’t just come from strangers. Family members—some of whom have known me since birth—say things that sting just as badly. It's frustrating. It's embarrassing. And it's one of the reasons I’ve withdrawn so much from the world.

These days, I mostly keep to myself. I have my husband, a couple close friends, and my mom. It’s easier that way—easier than navigating a world full of stares, intrusive questions, and the endless emotional labor of educating others about XLH and the complications that can come with it, especially when it's not properly managed.

Living with XLH has taught me the importance of resilience, but it’s also shown me how essential it is to have compassion—for myself and others. Disability doesn’t have an age, a face, or a set of rules. It’s not always visible, and it doesn’t always follow a predictable path. So, as I continue navigating this journey, I’ll remind myself—and others—that patience, understanding, and kindness can go a long way in creating a world where we’re all seen, heard, and respected.