Everyone is born an individual, unique, and the author of their own story. But some are born with a little more.
Being a child born with rare medical condition, the biggest lessons I’ve learned were, you’re going to lose hope more than once, you’ll grow to learn the most about your case, and if there’s something you want, no one can stop you. From the moment I stepped foot in Staten Island, NY and met Dr. Hoffman’s team, was the moment I knew those lessons true.
This surgeon wasn’t like anyone else I’ve ever met before. He made sure to acknowledge that I had given up hope in the past, I had more experience with my condition than any other medical personnel, and telling me I couldn’t do something due to my condition, was the fuel I needed to prove you wrong. At age 14, he treated me more like a teammate, and less like another patient.
Through our entire time together, we had plans workout, plans fail, and plans that became impossible due to previous trauma. But he made sure to never let me give up hope, but never push me to keep going if I chose not to.
10 years after the miracle surgery was suppose to fully work, but instead only took on one side, I had to make a choice to begin the process for the same miracle surgery, or leave things how it was and continue life. Many people would’ve probably wanted me to decide to try the process again, since I had already done it before a few times. But that was why I declined.
I’ve always been so open about the medical part of my life, considering it’s been my main focus for most of my 25 years. But I rarely express the feelings I have about it. Being torn between continuing my surgeries, showing everyone I haven’t given up, and accepting the only ways to make my condition a little better, are the things I refuse to do again.
My final decision came from the simple fact that i have gotten very comfortable with my life outside of my medical world. Getting to experience life as a young adult should, was the biggest tease, and I wanted more. Being told I would have to do the same process I had endured my entire high school days, scared the living shit out of me. Not the surgery, the pain, or recovery, but that I would have to put the life I have created the last 8 years, on a big stand still. I’m referred to as a pro patient and that cannot be more truer. But I craved the life I now know, not the life I had put on the far back burner.
My current situation isn’t ideal in the reference of pain or discomfort, but the realization of going backwards and risk of the process failing, exactly how it previously did, wasn’t worth the possible good outcome. Am I happy things aren’t better? Of course not, but I am more relieved that my life can continue as I have made it, and that we were confirmed my jaw and joint are completely okay enough to be left as is for a long time.
That last visit was the most bittersweet I’ve ever experienced, from knowing I wouldn’t have to see the team I had grown to love as family, to hearing things cannot get better, but won’t get worse anytime soon. I have made my decision with the blessings of my surgeon and with that, I say goodbye to NY. A place I will always cherish and miss.
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