I went into the hospital last week with absolutely unbearable pain (on a scale of 1-10 it was a 50). Turns out I have gallstones, and will be getting my gallbladder removed in the next month or so.
Anyway, I had the nicest ER doctor ever. He talked to me for a while and he was just super nice. He was pretty soft spoken. He talked to me for a while and then went to talk to my dad about what they were going to do. He talked to him for about 10-20 minutes. He came back and we were talking and he goes “I think I’ve heard of Moebius Syndrome but I’ve never seen anyone with it. You must be very special”. Then he went on and was like “I know that sometimes you must wish you weren’t though. I know you’ve had a lot of surgeries and inconveniences but don’t be afraid to speak up and tell us if the pain still remains”. I don’t know if I’ve ever had a doctor that was like that. He was amazing. I was actually really impressed.
But I don’t actually think of myself as special. Different.. maybe. But I’m no more special than anyone else, I don’t think. Special would mean that I’m somehow better than others. I don’t see that. I know that I have this rare neurological condition so maybe I’m diverse. That’s the word. But all of this doesn’t matter a huge amount.. I just want to spread awareness of Moebius so that we eventually won’t have to explain it to doctors. They’ll just know. And then, maybe, we won’t be seen as special or different.