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The Power of Getting My Ears Pierced as a Person With Facial Differences

I have pierced ears. I can hear you thinking, “Yes, and? People have their tongues pierced nowadays.” Let’s put this into the right context.

Picture it: Italy, 1989. (I’m not kidding, just go with it.) I’m 17 years old and studying in Italy for a year to be near my Italian relatives and friends. Being truthful, I was also giving myself an ego boost. I have Goldenhar syndrome and hydrocephalus. I wasn’t necessarily overprotected, but my life very much revolved around surgeries and other medical procedures and making sure I got a good education — all closely supervised by my mom. All this was to ensure I could be a responsible, self-sufficient adult.

But I wanted to prove to myself that I did have the ability to be on my own before I left my family for college. I told my parents I wanted to take a break from the current round of surgeries to study in Italy. I’d have supervision from my aunts and uncles and the boarding school, but ultimately I would be deciding things without my mom’s supervision.

One of the characteristics of my disability is that I have atresia of my right ear and I wear a hearing aid in my left ear. I called my right ear a stump. In addition, the structure of my jaw meant my left ear was noticeably lower on my head than my right stump.  It may be surprising to some, but this was the one aspect of my disability I cared the least about. However, my mom, trying to keep the teasing and bullying to a minimum, kept my hair long and my ears covered.

As the stubborn child I was prone to being — “testa dura,” as my mom often proclaimed — I would argue with her to put my hair in ponytails or braids. Sometimes I won that argument and I did not regret it. So it should come as no surprise that as I watched my sister get her ears pierced as a teenager, I expected the same to happen to me around the same age. In reality, my mom and I got into another argument. I didn’t win this time and I regretted it.

Going forward again to Italy in 1989, pierced ears were still a big deal — a rite of passage, if you will. Piercing anything else was still considered by most in the Western world as too extreme. With thousands of miles of distance from my mom, she could not argue with me or I with her as I considered getting my ears pierced. I wasn’t looking to partner with a friend using a needle and an ice cube in a garage. This was not an act of rebellion. I considered this rite to be my right as a person. I genuinely did not see my disability as a factor in this.

However, I did know my relatives were watching out for me. I knew which of my relatives would seek my mom’s approval before taking me to get my ears pierced and which wouldn’t. I made the easy choice and expected this to be a quick and simple experience. My cousins took me to their local jewelers, who reflexively agreed to pierce my ears.

As I settled into the chair she uncovered my left ear and then my right. Her face froze briefly and turned into pity when she saw my right ear. Quietly, as if she were afraid her mere words would break me, she said, “Mi dispiace cara pero penso che non e’ possibile.” “I’m sorry dear, but I don’t think it is possible.” I dismissed her tone and pointed to the “lobe” on my right ear stump.

Not wanting to be insensitive, but still looking doubtful, she placed the pen mark on my right stump lobe. She pierced one lobe and then the other. It hurt for a moment as I expected. When I looked at the jeweler, I could swear she was genuinely shocked that my stump did not fall off from the puncture. Still, she dutifully fitted me with the customary studs and gave me the routine care instructions before I went on my way.

Later, I called my mom and told her what I did. Again, this was not about rebellion. This was about me doing what anyone else would do without regard to my disability. That’s why I felt comfortable telling her after the fact.

She was quiet for a moment. I could tell she was thinking of what to say. She was mostly concerned. Not necessarily about how it looked. She brought up that I was in the middle of reconstructing my jaw. She reminded me that my latest bone graft wasn’t as strong as the doctors hoped, so she was concerned that if I got an infection in my lobe it could travel to that part of my face and affect the graft. I don’t know if that made sense, but I appreciated her concern and promised to maintain the piercing well.

That was the last time she voiced any concern. Shortly after that conversation, I bought big round, dangly earrings. I wore them as soon as I could remove the initial studs. If I looked carefully in the mirror, I could see they dangled unevenly because of my ears. Whether or not they made my uneven stump and ear more obvious to others, I don’t know — because I didn’t care.

I enjoyed collecting and wearing large, dangly earrings. Thirty years later, those earrings still hang among my collection of earrings. I wear them sometimes, look in the mirror and think they look great.