Published by Bustle
I’m nervous as I cross the Bay Bridge into San Francisco. I tap my hand to the beat of the music against the gear shift, foot pushing down on the gas. I have extra outfits piled in the backseat so the photographer I’m shooting with can decide what he wants me to wear during the fashion shoot, one we’ve scheduled to develop both our portfolios — him as a photographer, me as a model. It’s my first real fashion shoot since I began using a wheelchair, and I’m feeling anxious about whether or not I’m physically up for it. Sean and I haven’t met in person yet, even though we’ve known each other online for almost a year. Meeting people for the first time always fills my head with questions: Will the conversation flow smoothly? If it’s uncomfortable, how long do I have to stick around until it’s polite enough for me to leave? Today, though, one worry overshadows the others. Today, I’m worried about my wheelchair.
I’m a part-time wheelchair user with a collagen disorder called Ehlers-Danlos Syndrome (EDS). To put it simply, collagen is the brick and mortar that make up every single part of our bodies, and my collagen is built incorrectly at a genetic level. Every patient expresses EDS symptoms differently. My primary symptom is unexpected joint dislocations. EDS patients often have co-morbidities (multiple diseases co-existing simultaneously in one person)- and I am no exception. I also deal with Postural Orthostatic Tachycardic Syndrome (POTS), a condition that causes me to faint when I stand for too long.