Trust not too much to appearances.
-Virgil-
Branding fighters with nicknames is a custom about as old as the act of combat itself. Presumably started as a psychological tactic aimed at intimidating would-be opponents, adding a handle to one’s family name very quickly became a means of marketing and a way of garnering attention. However, not every playing field is equal. In fact, despite embracing every colour under the rainbow flag and applying it to her dreadlocked hair, as well having a scrapper's reach on social media as an internationally recognized model, nobody sees the fight of Chenai Lucille Austin, widely known as “Stormy”.
Named after the protagonist’s love interest in the Dean Koontz novel Odd Thomas, Stormy’s fight started on June 1, 1991 – the day of her birth – and it has not allowed the prized life-pugilist a single round off since.
When you meet Stormy, you think, “There’s a young woman, no more or less profound than any other 25-year-old in Metro-Vancouver.” (If, that is, you can disregard her work within cannabis reform, social justice and feminism, as well as her photography and modelling work with the alternative-beauty collective, Suicide Girls.) At just 25 years old, though, Stormy has the joints of a nearly 60-year-old woman. With nine reconstructive surgeries accounted for and a 10th on the way, the Fear The Walking Dead actress suffers from a rare condition called Ehlers-Danlos syndrome (EDS).
EDS is an incredibly painful hereditary connective tissue disorder that affects the body’s most prominent protein, collagen, and is found in approximately one in 5,000 people worldwide. Because collagen lives in one’s muscles, skin, bones, blood vessels, tendons and digestive system, the multiple systemic issues Stormy faces on a day-to-day basis are as mind-bending as they are debilitating.
Due to the number of variances found in the alt-model's body chemistry, a staggering amount of secondary conditions accompany Stormy’s EDS, as well, such as the autonomic nervous system dysfunction dysautonomia.
The combination of afflictions results in daily assaults: from excess mucus production and easily bruised skin, to complete orthopaedic shifts in her skeletal structure. Without a hint of hyperbole, Stormy experiences pain about as often as most of us experience an itch. During any given visit with the beauty, one can only stand idle as her ribcage shifts its position or joints unexpectedly dislocate in excruciating fashion. And, in addition to the physical stress endured by Stormy’s slight frame comes a level of mental anxiety that nobody should have to shoulder: the knowledge that neurological deterioration is prevalent with EDS.
The gene responsible for the pathogenic variant (mutation) remains unknown, though the latest science suggests that they may be close to narrowing down the culprit. With six distinct types of EDS currently accepted in medicine, Stormy’s doctors theorise that she drew a combination of type one (classical) and type three (hypermobility).
Due to having also been diagnosed with Orthostatic Hypertension, Stormy also has arthritis, myofascial pain syndrome, asthma, and undiagnosed gastrointestinal issues.
But, if someone suffering from all these afflictions came onto a bus you were riding on, would you think to offer her the comfort of your seat? It may surprise you to hear that many wouldn’t.
“I've had people question my disability on transit, and deny me a seat based off of the fact that I don't 'look' disabled,” Stormy says, between bites of pre-show edamame at downtown’s Granville Room.
Getting outright ignored has become an expected reply from some of the able-bodied commuters, refusing to relinquish their coveted spot despite having sat in the section designated for persons with disabilities.
Despite a western society that has been told ad nauseam to not "judge a book by its cover", most of us do exactly that.
“There aren't always visible indications of disability,” Stormy explains, “and it's important for people to be aware and consider that they can't see what someone is going through just by looking at them.”
It is hard to understand exactly how much discomfort Stormy is in at any given time. If looks can be deceiving, it’s her consistent smile, thoughtfulness towards others, joke telling, and pursuit of the next fun activity that hide the truth. When asked about her resilience, though, Stormy, is quick to remind friends and observers that they “only see her in her good moments.”
“It's difficult appearing young and healthy on the outside while feeling like my body is tearing to shreds on the inside.”
So, the next time someone asks if they can have your seat on the bus, don’t question their need for it – question yours.
