Shackled

My wrist feels heavy when strangers gawk at the dull metal that loosely sits. I watch them squint trying to read the small engravings before they finally ask, “what is that?” and they’re never prepared for the answer that I was bestowed with an incurable disease that I must display.

Just in case.

Their stares quickly turn from curiosity to nervousness because they’re not sure what to say which is fine because what do you say to someone young attached to a disease that cannot be disposed of?

Typically, I do not have the heart to tell them how close death has come to me. Or that my days are contained with pain. So I smile and say, “that Achalasia sounds more like A-lack-of-Asians”. They’ll laugh and I’ll laugh. Believing I am okay even though it’s all pretend.

I cannot aptly describe what it is like to constantly be choking on my own bile created by the consistent opening and closing and opening and closing and opening and closing of my esophagus like a serpent wriggling and writhing within my core while spewing venom. The omniscient God of my body is an organ that has lost its biological control. And though this persistent snake can often times bring me to my knees, screaming to the heavens for mercy, it underestimates the vessel it as chosen because I am not too easily persuaded.

I have watched doctors and nurses and specialists pace back and fourth and dance around the word “incurable”. Because they’re not quite sure how to tell a 17-year old girl that she is possibly dying. Or how to explain that her esophagus was meant for an 80-year old woman and that life will never function the same. Eating will be a chore for the rest of my life and I still hear my doctor’s voice repeating:

Small bites, chew well. Small bites, chew well.

But I smile

And make YouTube videos in hopes of helping someone feel less alone by putting myself on display like the bracelet I am shackled to. Then these two girls from Saudia Arbia will interview me for their 10^th grade biology project about rare disease. But are more interested that I am woman that is going to college.

They’re terrified they will not get a good SAT score so that they too can go to college and escape their war ridden country and I’ll sit there ashamed because I do not know what to say much like the people who stare.

And yet these girls tell me how brave and strong I am because of a disease that only imprisons my ability to eat; the only thing weighing me down.