This post isn’t about me, because this isn’t about me. I’ve deleted sentences where I dip too deeply into my own psyche, because this is her story. I am just an observer, or a character in it.
My sister has lamellar ichthyosis. Chances are, you’ve never heard of it, and since she’s one in 600,000 you’ve probably never met anyone with it.
She’s a f*cking badass.
She runs marathons. She works 10-hour days. She takes care of our grandfather and buys him groceries, takes him to doctor’s appointments, and makes sure he’s OK. She’s the first to visit a coworker or acquaintance in the hospital, to bring something she baked (probably after a marathon and on her way to work), and to call you and ask you how you’re doing when she hears you had a rough day at work.
She never complains. She never talks about being hot, or feeling tight in her skin, or dry, or sore.
I’ve been with her shopping somewhere and we’ll notice a few young kids looking at her, noticing she’s different, avoiding staring like they’ve been taught to do. My sister beams warmly at them, walks up to them and chirps (genuinely): “Is there anything you’d like to ask me?”
She greets stares with smiles, and doesn’t get offended. She uses it as an opportunity to inform, to educate. She is an ambassador for rare diseases—whether or not she intends to be.
I’ve heard stories of people saying horrible things to her. The man in the parking deck that felt compelled to shout “Time to lay off the tanning bed!” The well-intentioned older women who cooed at her, pitying, and asked how she got burned. And the ones that think we can’t hear them. Newsflash: we effin’ hear you. The gall of these people—to feel it’s appropriate to comment on a person’s appearance, whether or not you’re 100% convinced it is a sunburn—even if you’re sure, why do you need to step up and say something?
Are these the same people that question overweight women on their due dates, or ask androgynous dressers what their true gender is?
My anger at these situations must be nothing compared to what Darin feels inside. And yet she handles these situations with grace, never becoming threatening or argumentative. The strength that must require is unfathomable to me.
Rudeness breeds rudeness. I should try to follow Darin’s example and respond to rudeness with patience. Maybe the jerk in the checkout line at Whole Foods had a bad day. Maybe the lady that cut me off on the road is distracted by personal tragedy. You just don’t know, so why perpetuate the negativity?
This is Ichthyosis Awareness Month, and I thought it would be helpful to contribute some additional awareness. I can’t tell you what it’s like outside of a second-hand perspective—I know what it’s like to walk next to someone in summer heat, offering ice or water or shade (and being aggressively shot down!!!! She’s independent, dammit!) but I have no idea what it feels like to be unable to cool oneself by sweating.
The closest I’ll have to that first hand experience is a piece Darin wrote last year for Carly’s blog (Carly also has Ichthyosis). It’s about the importance of touch, when most people might see you and think they shouldn’t touch you. It’s beautiful, and I recommend (insist) you read it.
And consider that sometimes, the strongest of those among us are often the ones fighting battles that we’ll never know are waging deep within. The strength required to respond with grace and kindness when most of us would respond with bitterness or aggression is more powerful than anything most of us face on a daily basis. You never know what someone else is dealing with—so be kind to each other.