Some people fantasize about that first date with someone new. Those comforting nods as you both discover all the things you have in common. The subtle glances from across the table. That magical first kiss.
Me? I fantasize about my first date. Period.
And my first kiss.
And my first boyfriend.
Why? Because I have yet to experience any of it. I'm 34 and my relationship slate is clean.
I was born with Freeman-Sheldon Syndrome, a rare genetic bone and muscular condition that causes joint contractures of the hands, feet, and knees, as well as scoliosis and facial deformities. Growing up, I had more than 20 surgeries, which means I logged more hours lying in hospital beds and sitting in stark-white doctors' offices than I did awkwardly talking to boys at school dances or gossiping about them at sleepovers.
I logged more hours lying in hospital beds than I did awkwardly talking to boys at school.
This was before social media, so I couldn't just close my laptop and pretend my peers didn't exist. Instead, I saw the stories of young love play out up and down the halls of my high school every day. Couples would walk hand-in-hand to class and leave love notes in lockers. Looking back now as an adult, I know they weren't exactly flaunting their relationships, but in my teenage eyes, they might as well have had a giant spotlight following them around.
I began to feel as though I was somehow standing on the outside, watching a documentary to a life I wasn't a part of. And maybe, I wondered, one I would never be a part of.
It wasn't just the idea that some of my classmates were having sex that bothered me or made me feel so different; what bothered me the most was that they were falling in love in the first place.
I may have had different life experiences than my peers, but my disability certainly didn't make me immune to the emotional roller coaster of adolescence and young adulthood when it came to crushes, even if they were admittedly unrequited. In high school and college, I fell hard for fellow newspaper editors — apparently, I go for the cute brainiacs who woo with their words — and for some 14 years, I nursed a hopeless crush on the son of my parents' friends.
But as much as my heart wanted to tell them exactly how I felt, a little voice in my head held me back. Each time I'd work up the nerve to open my mouth, I heard it repeat the same mantra over and over: "Don't say anything. You know your disability will just get in the way. Why would he find you attractive?"
It also didn't help matters that I was painfully shy and that I compared myself to my friends. They had straight legs; I had scars and deformities. They could go anywhere; I felt held back by my wheelchair. I feared having to "explain myself" and assumed dating someone with a disability would just be too much to ask.
So I listened to the voice in my head and kept quiet. It was the first time I remember feeling unattractive and self-conscious about my disability.
I never thought twice about my disability as a kid, but young adulthood has a way of making you see things from a new perspective, and it's not always a positive one. Like a magic wand, it magnified all my newfound fears and insecurities.
"Why am I 20 and have never had a boyfriend?" I once wrote in my journal. "No boy has ever been interested in me. Do I turn guys off with my disability? I really want to experience true love, but I wonder if that could ever happen to someone as ugly and undesirable as me?"
I'd been raised to never let my disability define me, which is something I thank my parents for every day. So, on the outside, I presented this brave, can-do-it attitude to the world. Nothing was going to stop me. But on the inside, especially when it came to looking for love, I felt like a complete failure. My friends never said anything, either; I guess they just assumed my outward confidence was a reflection of how I felt inside.
But I believed I was the girl who would never be seen as some guy's catch. I felt awkward and invisible. Before long, it had become my shtick, something I clung to out of habit because it was safe and comfortable. But I wondered: Was I more than that?
By the time I'd turned 24, I'd graduated from college and started a blog, So About What I Said, back when blogging was still a relatively new medium. I wanted to tell my story: my doubts, my hopes for love, and what it was like to navigate that with a physical disability.
For the first time, I was vulnerable, unabashed and most importantly, honest. I often wonder if that's why I became a writer — as a way to have people notice me more for my words and my thoughts than my physical appearance or body. It didn't matter that my hands were deformed or that I had visible scars: my true personality came shining through, and it sort of felt like a beacon of light guiding me forward.
There's this pervasive societal perception that women with disabilities aren't sexy and, even more damaging, that they're not interested in romantic love and relationships. The misguided belief is that our disabilities make us less of women, and therefore, we're not seen as viable partners.
Yet writing about my disability, and how it all fits into my search for love, surprisingly went a long way toward healing. Everyone wants to feel desired and wanted. The fact that I'm disabled doesn't change that.
Slowly, I realized something: I let my disability make me feel undesirable and unsexy. It didn't start that way and it certainly doesn't have that kind of power. I gave it that power — no one else did. Not my family. Not my friends. And certainly not men.
I'd spent so many years focused on the external — how I looked, my deformities, my wheelchair — that I'd completely lost sight of who I was on the inside. It was only when I started recognizing everything I did have that I began to smile and feel sexy again. I am witty, intelligent, kind, loving, and loyal. That's what I choose to define myself by — not those superficial characteristics that will eventually fade and wither away.
Telling my truth helped to change my internal story as well — the one I told myself for so many years about what it means to be beautiful — and that is what's made all the difference in the end. My story may be a bit different, but I like where it's going.