“Treat them like they’re sick and they’ll act sick.”
I heard these words so many times growing up but never paid much attention to what they meant. It always came during a conversation between the doctors and my parents, but I was usually daydreaming and not paying much attention. I’d just wait for them to tell me when I was going to be in the hospital again. Then I would perk up long enough to find out what the surgery would be on and how long I would have to miss school. Then I usually went right back to daydreaming.
I really spent too much time lost in my own head as a child. In Kindergarten, my parents got called for routine parent conferences because teachers said I spent too much time daydreaming. When I wasn’t in one of my make believe worlds, I would walk around staring at my feet and apologizing to everyone for being “ugly”.
I was really referring to the diagnosis my twin sister and I received when we were six months old. Born with a rare craniofacial disorder called Crouzon Syndrome, we were destined for an unorthodox life. Crouzon Syndrome is where the bones in the head and face do not grow. In fact, the bones fuse together prematurely, meaning surgery is required to expand the skull and advance the mid face.
In high school, one doctor told me that my sister and I each had undergone more than 60 different operations. I never counted though. When I would have surgery, they would often cut my head from ear to ear, break the bones in my skull and face, and move them to their more appropriate locations. I’d also have surgery on other things too in order to correct my vision, hearing, and breathing.
I would sometimes wake up unable to recognize myself. That’s why I was a five-year old apologizing for being ugly. I simply didn’t recognize myself and constantly asked my parents to give me my “old face” back. Then I would get upset when the doctors would try to tell me how beautiful I looked. I did not feel very beautiful. The stares and comments from strangers, and my classmates alike, served as a constant reminder that something about me was definitely different.
My Childhood – We Weren’t Sick
My mom said I was a very happy child overall though. She said I was very low maintenance, never complained, and went with the flow. My parents did such a good job of following the doctor’s advice to not treat us like we were sick. Though, if my mom had her way, I am pretty sure she would have had me walking around in a football helmet everyday just as a precaution. But instead, I played sports: soccer, softball, cheer-leading, you name it! I was never actually any good at these sports but hey, I still played!
Surgery and hospital visits became a pretty routine part of my life. Sometimes my mom would show up unexpectedly at school and tell me we had to go to a pre-op appointment because I was having surgery the next day. I would usually get annoyed as though I was being slightly inconvenienced, and then promptly return to school as quickly as possible, usually with fresh stitches intact.
Other times, I’d get home from the hospital on a weekend and run next door to my best friend’s house to play softball and jump on the trampoline. Other times, I would get home with less energy, sometimes still unable to open my eyes because the swelling was so severe; so, my best friend would come over and lie in my dark room with me for hours. Sometimes we’d talk, sometimes we wouldn’t. But when we did, she would usually tell me stories so vivid that I would almost forget I couldn’t open my eyes. It was in these moments that I learned what it meant to be a true friend.
As I grew older, surgeries became less frequent, but recovery time took longer. My appearance drastically changed once again when I was 12, and emotionally, I began to struggle a bit more. My peers became less and less understanding and I became less and less willing to offer an explanation for my appearance or frequent absences from school. Teachers often protested and didn’t think I should get “special” treatment when I was in the hospital. This often-complicated things as I would be in the ICU and stressing about an upcoming exam. In High school, a guidance counselor suggested I focus on my health and only take “easy” classes that would not qualify for college enrollment. Obviously, I refused.
My last operation was six years ago now. I look back at those 21 years of hospital visits and operations; it’s crazy how much can change so quickly. I am oddly grateful for the experience because it made me who I am today. I ended up graduating early from high school, went to college, and then onto get two master’s degrees. I’ve lived in New York City and Switzerland and I have traveled to more than a dozen countries.
I developed such a profound appreciation for life at a very early age; I try my best to never take any opportunity for granted. I’ve also learned what it meant to be a true friend, to value genuine human connection and never care too much about superficial factors. In face looks like, and there’s so much more to me than just this diagnosis. so many ways, this diagnosis was a blessing. It connected my family in way that made us unbreakable. It taught us all strength and resilience. Crouzon Syndrome taught me that there is so much more to a person than what their face looks like, and there’s so much more to me than just this diagnosis.