She takes the final, belaboured step down from her front door to the snow-covered sidewalk and pauses for a moment, one unsteady hand hovering just above the wooden handrail, waiting for her equilibrium to catch up. From inside my car, I watch the unintentional pantomime, waiting for her eye contact to assure me she’s going to make the final three-foot expanse separating her from the car’s passenger-side door. The movie doesn’t start for another half-hour, so it’s not a big deal if she needs more time, but she’s not going to be happy if there’s a big line-up for popcorn.
Without looking away, my left hand moves to the driver-side door and my fingers find the power-window switch. The glass slowly descends into its hideaway, the low whirring of the electric motor taking her attention away from the balancing act. Her eyes shoot up from her feet and refocus on me.
“You good?” I ask through the open window.
She nods, forces herself to stand up straight, breathes in deeply, and puffs out her chest in mock bravado. A couple of penguin steps later, she opens the car door and plops into the passenger seat.
“I’m such a fucking inspiration,” she exhales in a long sigh.
We started hanging out a couple of years ago, shortly after she began dating a mutual friend. A small group of our friends play “Pathfinder” – a “Dungeons & Dragons”-style roleplaying game – every Sunday night. Having never played before, she began attending as a casual observer, mostly out of vague curiosity, but quickly became a regular fixture at our table.
Our regular Sunday night games normally run for three or four hours. If the Sunday falls on a long weekend, this easily stretches to six, eight, even ten hours. Without the looming threat of an early Monday morning, we happily hunch around the table, adopting what we believe are “gnome-ish” or “elven” affectations and mannerisms, and battling evil necromancers late into the night — The jury is still out on whether habitual gamers are a chiropractor’s worst nightmare or financial wet dream; they probably view us as big dollar signs with terrible posture and sagging shoulders.
Eventually, she took the plunge from ‘casual observer’ to ‘full fledged player’, joining our campaign to rid the world of the malicious Drogoveld (an ancient frost dragon set on turning the entire planet into a giant snowball). One night, as our game was ending and we were packing up our character sheets and dice, she turned in her seat to face her boyfriend: “Can we wait a few minutes before we leave… my legs don’t work,”. She said this so casually, you’d think she’d said, “I just need a minute to brush my teeth, then we can go to the mall,”. But, no, at some point during the game, her legs had lost all feeling and functionality. I tried to process how she was being so calm about this discovery, and her response was essentially: They had stopped working before and they would start working again any minute now. Somehow, at 26 years old, she already wore it like an old hat.
These random bouts of “no legs” — our shorthand for when her legs stop working without warning or explanation – were just the first item on a wide-ranging list of random and haphazard symptoms: One day, a 12-hour migraine. The next day, maybe her left arm works, but her right needs to be held up by a sling. A week might go by without incident, then, out of nowhere, she develops a rash because her body decides it’s allergic to sunlight. Tired of your solar rash? No problem, we’ll just set you up with some temporary loss of vision and shortness of breath. Honestly, if you try going through the full list, you eventually feel like Ben Stein in “Ferris Bueller’s Day Off”:
Rash… Fever… Fatigue… Joint Pain…
Bueller… Bueller… Bueller…
She spent nearly a decade watching a procession of doctors and specialists conduct inconclusive medical tests and prescribe not-quite-right medications in an attempt to treat her growing collage of symptoms. Then, seemingly out of nowhere, she received a formal diagnosis last year.
“It’s Lupus!” she exclaimed with a wide smile.
Those of us sitting around the dining room table were understandably disconcerted. It wasn’t exactly the reaction we were expecting from a person recently diagnosed with a chronic autoimmune disease. Sensing our communal confusion, she tried to explain.
I saw Jaws for first time last year as part of the movie theatre’s “Classic Cinema” series. Well, more accurately, it was the first time I saw Jaws on the big screen. I had seen it in various formats throughout my childhood and adolescence — everything from extended 20th Anniversary ‘Special Edition’ VHS tapes to completely sanitized afternoon cable TV screenings, where even the slightest hint of blood and most casual of swear words had been removed, for fear of corrupting my innocent and impressionable mind.
The original Jaws, released in 1975, became an instant classic of horror and suspense. It scared the b’jesus out of audiences to the point that tourism in beachfront towns took a dramatic hit during the summer following its release. People who watched it – and a lot of people watched it – were literally too afraid to go near the water. One reason for this lays in the decision by director Steven Spielberg to not show the shark on-screen until more than an hour into the film. He gave the audience brief glimpses of the shark: a single dorsal fin breaking the surface of the water, turning in the direction of unaware swimmers, then submerging without a trace; late-night skinny-dippers being violently pulled under by an unseen menace, as the water turns deep shades of purple and red; we even get the classic ‘shark-vision’ perspective, which put the audience in the driver’s seat as the creature stalked its prey. Spielberg built suspense by playing with our primal fear of the unseen, knowing that our imaginations are capable of conjuring up a monster far scarier than any on-screen carnivore. Even though people knew it was a shark – the titular animal was featured heavily on posters and promotional materials – they still jumped out of our seats when, at the 80 minute mark, the creature lunges at Brody as he absentmindedly chums the water.
In the decade that preceeded her diagnosis and somewhat atypical “It’s Lupus!” proclamation, the disease had stalked her from just out of sight, beyond the edge of the water. It would breach the surface, strike quickly, grab an arm or a leg, render it temporarily useless, then disappear without a trace. By the time the doctors had enough evidence to run to the shoreline, screaming, “SHARK! It’s a GREAT WHITE SHARK!”, she was already too jaded by years of tests, medications, and misdiagnoses. At that moment, it just felt good to finally know what was causing all her medical mayhem.
When you have a friend or family member with a chronic illness, you instantly become hyper-aware of how people with similar medical afflictions are perceived by others. You also become acutely aware of your own hidden prejudices.
Historically, our culture has pigeon-holed people with chronic and degenerative diseases. They get diagnosed, they slowly slip out of public view as the symptoms worsen, and occasionally people report sightings or share blurry photos of them on message boards, like an arthritic sasquatch:
“You know, I heard Bill got diagnosed with Parkinson’s, but the other day I swear I saw him using the ATM! Isn’t that something!”
Can you imagine your mother saying something like that? I certainly can. It’s not a knock against my mom, or your mom, or anyone’s mom. (I’m sure all our mom’s are wonderful!) They just might not understand the underlying values informing the observation or the message it conveys.
People who are unfamiliar with a particular disease tend to compensate for their own discomfort by overemphasizing the importance of minor everyday activities, turning them into the single most inspirational achievement of the human spirit. They want to make the person feel better, but unintentionally end up treating them like a puppy that learned a new trick, instead of treating them like a person who is just trying to live their life with some degree of normalcy. (It’s important here to point out that there’s a population of people living with degenerative diseases who legitimately consider it a moral victory to use an ATM, walk down the street without a cane, or do anything else that I unfairly take for granted on a daily basis. For those people, simply getting out of bed is a defiant, “Fuck you!” that deserves to be celebrated.)
Since her diagnosis, the “over-inspiration” conundrum has become an ongoing joke — which is itself a coping mechanism — among our small group of friends. We counteract the trend the same way we deal with most anything beyond our control: using sarcasm and sacrilege.
We get to the theatre with time to spare and luckily the concessions line-up isn’t too terrible. She orders a drink and a large popcorn with layered butter because, in her words, “then they have to give you a fresh bag instead of the old stuff that’s been sitting in the warmer all day,”. The cashier – I refuse to call them ‘cast members’ – slides the debit card reader along the counter, pushing spilled popcorn to either side like a miniature cow-catcher. She wraps her hand partially beneath the reader to pick it up, hesitates, then reconsiders. Setting the reader back on the counter, she places one open palm on the top of the screen, holding it (and herself) steady, as she enters her password with slow, deliberate punches of her index finger. She struggles momentarily to remove her card from the reader and shakily puts it back in her purse.
Seeing this, I automatically reach for the popcorn and drink. “But I’m a strong, independent woman,” she says in protest, though it’s more directed at the disease itself than at my attempts to help. I readjust my hand to maintain a grip around the streaks of layered butter that have already soaked through the bag. As a compromise, she takes the oversized drink and is responsible for getting straws and napkins before we head to our seats.
When we get inside and find our seats, she uses two hands to secure the drink in the circular holder fastened to each arm rest. “See?” she says, as I pass her the popcorn. “Strong. Independent. Woman.”
“Yep. A fucking inspiration,” I reply.
This blog post was written by my friend Jonny Hodds. Jonny is a great writer who recently started his own blog. We go to movies together a lot and when we do he always holds the popcorn for me because he’s nice but mostly because he knows if I clumsily drop it he won’t be getting any popcorn. Sometimes we go for coffee and chat about things like ableism and inspiration porn, subjects he has become more aware of through his friendship with me, a person with lupus and episodic disability who doesn’t shut up. We crack jokes about my illness a lot because that’s what friends are for. Make sure to check out his blog and follow him on twitter @JonnyHodds.