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she/her | i come & go

est. march 5, 2020

Message to Readers

Thanks to Anne Blackwood, for inspiring me and giving me the courage to tell this story! This is the first time I've written something in this style, so if you could drop a comment or a review with some feedback, that would be great!

I have Celiac Disease, which is a condition where my small intestine attacks itself if I eat certain foods (to put it simply). I was born with it, but was diagnosed at age 5 and have been gluten-free ever since! Feel free to ask questions, if you want. It doesn't make me uncomfortable to talk about this stuff :)

this is an old piece that i just felt like republishing since i am cleaning out my portfolio and found it :)

blood-drenched secrets and auto-immunities (feedback, please!!!)

July 7, 2020


when i was younger, my attention span was practically non-existent. i'd go from singing and dancing, plastic beads clinking around my neck to running through sprinklers in my canary-yellow swimsuit (the one with the alligator on it, or was it a crocodile?), the patches of fake vegas grass burning my feet. sometimes i complained, stomach pain smattered in with the usual frivolous worries, of toy sharing and dogs licking my feet, but then i'd run off, for time was precious and there was so much to do. no time for worries; there was too much fun to be had. my complaints were glazed over for years, for even i paid little attention to them.

but soon patterns etched themselves into the space between my heart and lungs. i was falling behind my growth curve. i was tired most of the time. the fist that twisted my intestines into knots was a part of me, and would always be a part of me. i cried. my mother worried. my sister looked on from the doorway. though i was still in my own world, the edges of my bubble started to melt away, leaving me vulnerable to life's curveballs. 

i hated doctors. to get my preschool shots, nurses had to pin me down, wrestle me to the wax-paper table, inject me with their crucial poison, all the while trying to muffle my screams. there, you're done! she had said cheerfully, pulling the needle from my fleshy arm. no more shots 'til you're eleven! i carried those words with me, a mantra that kept me calm in the whitewashed walls of the doctor's office. but she had lied. my experience with needles were far from over.

i've seen all kinds of phlebotomists (blood drawers, blood testers, blood stealers), enough to last me a lifetime, i'm sure. they all come at me, brandishing their butterfly needles, a weapon with a childish name, a misnomer indeed. but they're different, distinct. for me, all doctors used to be faceless. sometimes i still forget what my doctors look like between checkups (embarrassing, i know), but phlebotomists have always been a language i could speak. the kind who laugh at vacation mishaps, who let you show them pictures of your dog as a distraction, who turn a blind eye as your dad slips you gummy bears to keep you calm in your first time without numbing cream. the kind who make excuses about scar tissue when they dig through your arm, searching for the blood vessel, who work silently as you try not to fidget. but they all have another thing in common. they take what is rightfully mine, sit in silence while my hemoglobin flows through clear tubes. it's almost mesmerizing, actually, watching the stream of my hemoglobin flow into their tubes, to be capped off and scoured for antibodies and answers. i used to turn away, sickened by the shameless way they siphoned my secrets from my veins, secrets i didn't know, but didn't want them to know either. but now, i barely feel the sting as the needle slides cleanly through flesh and blood vessel in the spot between my right forearm and elbow. and i know they're trying to help. but it didn't feel that way at the time.

biopsy, they said. anesthesia, they said. i wondered, five year old hands gripping my mulan doll tight to my chest. they let oblivion flow into my veins through an iv, eyelids heavy, rumble stirring in my throat, trapped by a balloon of exhaustion. and it was over. and they named the bully that lived inside me, a name that echoed in my brain. celiac disease, they proclaimed, medical mumbo-jumbo swirling through my subconscious. ttg, bloodwork, auto-immune, permanent, cross-contamination, villi, gluten. elmer's glue? glue stick? but they said something about a disease. that was the only part that registered at the time. i had a disease. i was different. 

and, yes. i'm different, but aren't we all? no two are exactly the same, so being different is normal, or at least i convince myself so. and yet, when your whole family eats sushi or your class stuffs donuts in their face as you sit off to the side, it gets somewhat lonesome. but the world is full of good people, people who drive across town to pick you up a cupcake so you don't feel left out, people who devote their lives to research or to scoping and blood stealing and fundraising and progressing.

and yet, even diagnosed, things aren't normal. vomiting my way through third grade graduation, constantly limiting what i eat, the worries that come with a simple trip to a restaurant, it's not easy. it doesn't get easier to explain that you aren't contagious, that your body attacks itself if you eat what they consider to be gluten free. when people laugh and say, yeah, i'm gluten-free too! gotta get with the trend! and you appreciate them identifying, but trend following and surviving aren't the same thing. 

some might call me a mystery, an anomaly, even. for i don't fit in, even with other celiacs. abnormal ttg levels, they say, as they drain vials and vials of my blood. tubes of my vital fluid have traveled all over town, been shipped to labs out of state. all to solve the mystery of me, to no avail. let's monitor her, examine her, track her progress. today, i'm fine. i'm accepting and i'm not alone. but sometimes i wonder what other secrets are hiding in my blood, waiting to spill out into the open.
i have nothing against doctors now! in fact, doctors are among the most amazing people ever, because they put their lives at risk to help others! thank you to all essential workers in this time of crisis!

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  • Starting Anew! (still Coolgirl though)

    I have reviewed this piece...but it might not show up yet because Write the World hasn't looked at it yet.

    over 1 year ago
  • happy butterfly

    *me laughing at the way I wrote that last sentence *
    But truly an excellent piece.

    over 1 year ago
  • happy butterfly

    Wow. I just wanna say well done for putting this out there.Sometimes it takes a lot of courage to open up about difficulties in your life.I still am trying to tell mine.I love how vulnerable and raw this is.It shows through the writing how you felt .So emotional. I'm happy you're better now or atleast I hope you will be.Stay strong,everyone has their own struggles.I take my hat off to you for sharing this<3

    over 1 year ago
  • Deleted User

    This is so good! Both Anne and you have inspired me to tell my story too ;) Love the way you write, you're quite good at non-fiction .

    over 1 year ago
  • Anne Blackwood

    *whoops forgot to like this earlier*

    over 1 year ago
  • Anne Blackwood

    Wow! I'm so glad I was able to inspire you to tell your story, and you told it so well. And you're right, you do sort of understand what I'm going through. <3

    over 1 year ago
  • Madelyn (Carolina Girl)

    I cannot imagine how hard that was for you.

    over 1 year ago
  • Madelyn (Carolina Girl)

    Mia thank you for sharing your story :)

    over 1 year ago