Rebel, rebel

It's a Chronic Thing

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“You’ve got your mother in a whirl.” 

During my freshman year of high school, I decided I wanted a nose piercing. No — I needed a nose piercing. Some of my friends had gotten theirs done, and they just looked so cool. 

I asked my mom, who wore mismatched Converse and shaved her head in high school, if I could get one, and she, to my shock, said no. “It’s on your face! It must hurt so much. Plus, you hate needles.” All fair points. But that didn’t stop me from fawning over that little sparkle that could sit so perfectly on my left nostril.

“Rebel, rebel, your face is a mess.”

Alas, I moved on to my dad, who brought me to see Alice in Chains when I was 13 and broke just about every bone in his body before he hit the age of 12. He was a little more blase: “I mean, it’s your face. But that’s a big decision. Plus, you hate needles.” 

There it was again: “You hate needles.” I have no clue where they got this impression. Running away from a flu shot in middle school? Perhaps. Squeezing my dad’s hand until it turned purple at a blood draw? Most definitely. 

“How could they know?”

OK, they had a point. So, 15-year-old me decided to wait. 

Then, at 16, I was diagnosed with lupus. Needles began to invade my life. IVs for fluids in the hospital; blood draws weekly, then monthly. The little pinch became routine. Now, I can watch the blood leave my arm, crimson filling test tubes. I welcome it as a reminder that I’m surviving.

While I no longer balk at the pain of a needle in my arm, I ran into a new roadblock. People with lupus are more prone to infections. A piercing could cause a flare or keloids. This information was a small devastation for me. 

Instead of puncturing a hole through my face, I had to find different ways to get that coming-of-age movie feeling. Something only teenage rebellion can give.

“You’re a juvenile success.”

I began curating impeccable playlists and aimlessly driving around my hometown. From David Bowie’s “Rebel, Rebel” to Pearl Jam’s “Alive,” I found that feeling of elation in music that fills your chest like a balloon on the verge of bursting. That is, until a few days ago.

“You love bands when they’re playing hard.”

I turned 19 this past weekend. One more year to squeeze out some teenage rebellion. So, I got my second earlobe piercings. I know it isn’t my nose, but it’s a step closer. If these heal properly, I’m one step closer to piercing my nose and fulfilling the dream that 15-year-old me had.

At 15, I was also in the midst of discovering my queer identity. A large part of this was exploring my gender and sexuality through the ways I presented myself. Coming to terms with my sexuality was a large, internal process. As I began to accept myself, there was a longing to externalize my newfound comfort with who I am. 

“She’s not sure if you’re a boy or a girl.”

Finding out I couldn’t pierce my nose and maybe couldn’t get tattoos was devastating. I’ve realized it isn’t just about rebelling but about self-expression. Lupus, always the taker, has attempted to minimize my modes of self-expression, and thus, put a damper on my self-discovery at the time. There were bounds — limits — placed upon the avenues I could explore for self-discovery. In some ways, I could not externalize my internal perception of myself in the ways I wanted to because of lupus. While I can find this elsewhere, there is just something about this stupid illness being the one to tell me “no.” My parents I can handle: Lupus is another story. 

Now that I’m 19, my parents have come around to the idea of a nose piercing, not that they were really that opposed to it to begin with. And that’s something else: I don’t think I was ever trying to rebel against them, especially since being diagnosed. I’m rebelling against lupus. If it’s making me sick on a day I’m supposed to be with a friend, I can reschedule. If it’s telling me to be careful with piercings or tattoos, I will be. But I won’t stop myself from getting them. 

There’s such an invigorating feeling knowing that you are taking back your autonomy. So I pierced my ears. My nose is next on the list, and hopefully, I’ll get a few tattoos later on. Maybe, much to my grandmother’s dismay, I’ll dye my hair blue. 

“Your hair’s alright.”

I’m so thankful 15-year-old me waited. In hindsight, I know I could have caused serious issues before diagnosis, and the 20 times I asked my parents to take me to a piercer between then and now. 

But I think I’m more thankful for the opportunities I have now. I didn’t know myself at 15 in the way I do now, and I’m glad 19-year-old me can run headfirst into a journey of self-discovery that only college can bring. 

“Where’d you wanna go?”

I also think remembering high school with a soundtrack I curated in search of a feeling is a gift I will forever cherish. 

To 15-year-old Kathryn: Thank you. For everything. 

“I love you so!”

Kathryn Conley writes the Thursday column on living with a chronic illness. Contact the opinion desk at [email protected] or follow us on Twitter @dailycalopinion.