What’s it like to be the medically rare girl? What’s it like to be the girl who needs spine surgery after already surviving 30+ surgeries in her 28 years of Iife?
Well, there’s nothing basic Betty about me and I’m definitely not another carbon copy Catherine. I’m not rare like a diamond. Instead, I’m rare like those once in a millennium hurricanes. I’m a force to be reckoned with. Strangers see me as vulnerable and fragile, but the people who truly know me know I’m anything but a delicate flower. I may be a flower, but not a delicate one — I have too many thorny scars from the pain I’ve survived.
Each thorny scar is like a roadmap of surgical experiences and other injuries that could’ve killed me. But they didn’t because I always pick up the pieces. I do feel pain, but by God, I’ll never show it to the outside world because I feel I must embody the grit of inner strength at all times. I’ve never known a pain-free life, so the pain becomes an inner competition to hopefully beat one day. You see, it’s like a mental war when your own body has betrayed you on a path to self-destruction.
Every single day I push my pain tolerance to the limit and I do it with my famous dark sense of humor. I survive each new surgery with the music from my ever-growing surgery playlist on Spotify. I like my music like I like my internal hardware: hardcore metal. Play Taylor Swift and find out how swiftly I can awaken from my newly sedated self to rip the anesthesia mask from my face. I will only go out like a light under strict terms and conditions that don’t include pop music.
I’ve got high walls built around my emotions, which can be both a blessing and a curse. I do cry occasionally but I never let others see my vulnerability. I don’t want their pity, but I also keep people at a distance so it won’t be nearly as painful when I have to watch them walk out of my life. I know I’m “too much” for most people and I’ve been abandoned by those who should’ve been there or promised to be there when I needed them the most. I keep my inner circle small for this reason.
I joke all the time because it’s the only way I know how to cope. Laughter really is the best medicine, right? Fear not that you will offend me with disabled jokes, because I’ll laugh like a damn hyena at them. Being physically disabled from birth is like being reincarnated into a senior citizen’s body! Like what the hell? I believe you’re doing life wrong if you don’t see the dark sense of humor in physical disabilities. I laugh because I know life is too short to not laugh at its bullshit. I’ve had too many near-death experiences and I’ve survived when the medical “experts” claimed it would be impossible. My stubbornness can irritate my loved ones but they know not to hamper it, because my stubbornness is the very factor that allowed me to be the rose that grew from concrete.
If you truly want to see me thrive, watch a team of doctors tell me that I can’t survive. The doubters don’t diminish me; they ignite my inner fight to soar above the flames that surround me. Don’t believe a rose can grow between the jagged cracks of concrete? Watch me not only survive but also thrive in the worst of circumstances. I have survived but not without the thorns of scars.
Also keep in mind, I don’t want to be your “inspiration” because Mother Theresa would be rolling in her grave if everyone aspired to be like me, the “foul-mouthed crippled catastrophe” from the coast of NC. The medically rare girl doesn’t want your pity. You can shove your pity and doubts where the sun don’t shine because nobody overcomes 30+ surgeries at a pity party with the Debbie Downer of doubts.