I spent last weekend being reminded that I am one fortunate little lady. Not because I have a few nice things, or a roof over my head. But because I have some of the world’s most inspiring, down-to-earth friends that remind me not only how to keep a smile on my face, but why.
I spent my first 4 years out of college working, living, and growing with these people. And, in the past year, I have come to realize that this isn’t just a one-night-stand type of gig, I’m keeping these cats around as long as I can. No group in this world has accepted me so quickly at face value, or allowed me to be more open about who I am and what I (at least think I) bring to the table. They let me be my overly excited, nervous, mumbly self. They refill my wine glass when it’s only 1/3 gone, they braid my hair when we’re watching TV. They let me be in charge of the hors d’oeuvres, they remind me to test my blood sugar, and, most importantly, they share their own stories with me. Materialism means nothing to us. Social status is irrelevant. Being popular is the antithesis of our group’s core values. In fact, we are all a bunch of dweebs with stories to tell and flaws to flaunt. All of us have unique medical “things”, personality quirks, strong opinions, and come from various upbringings. We share a passion for music and humor. Some of us work to live and some of us live to work. All of us like beer. A few of us do improv, the rest of us play sports. We say, “I love you” a lot. We embrace our differences and form secret alliances over our shared traits. We’re the strangest, most smoothly functioning handful of weirdos you’ve ever met.
Now that I’ve wasted 5 minutes of your life bragging about my goofy group of friends that could all live with me on the island of misfit millennials, there’s one individual in this group I’d like to highlight.
His name is Jason. aka JO 1.0, aka J. Jason is new to our tribe and he brings a whole new bag of tricks into the mix. Jason is a photographer, videographer, and natural entertainment industry buff. He’s a total wing nut and gives very sweet compliments. Jason is also a hemophiliac. What the hell is hemophilia, you ask? Yo, this shit is big time. JO has severe Hemophilia A, which keeps him from clotting if he gets a cut, and at times it causes random internal bleeds. It also means that his treatment involves a gnarly dose of an intravenous medication every 48ish hours (when you’re being good, right Jas?). Hemophilia is not only a chronic disease, it’s a mutation of the X chromosome. That’s right, mutation. Basically, Jason is a Ninja Turtle. When I first learned about Jason’s badass warped cells status, I was shocked. He’s a really cool dude, with a laid back swag, an artistic stroke of awesomeness, and a generally relaxed approach to life. Nowhere do I see him being “too careful” or “afraid” that he might ding himself on the kitchen counter playing beer pong with his homies. He even told me on the beach this weekend, “I like it about myself. It makes me me. It makes me better.” And there you have it folks, he likes it. It makes him better. He looks at it like it’s a unique deck of cards he’s been handed to play. He approaches his condition like it’s a competitive edge. It’s a bonus, it’s an extra feature to add to his profile. Yes, at the root, it’s fucking terrifying. Internal bleeds, are you kidding me? If he played by the rules, they would tell him he could die from a paper cut. But does that mean he’s going to walk around as if he’s rolled in a wad of bubble wrap? Um, no.
I was inspired by Jason’s story. I was so grateful that he was willing to talk about it with me, to ask me if I wanted to watch him infuse himself with his magic potion. He wanted to know about my pump and helped me think of creative places to tuck it while I was in a bathing suit. He told me he thought it was cool. And maybe, by talking about our diseases as if they were, in fact, “cool”, I believed it a little bit. Maybe if we all thought about our “whatevers” that way, we’d brag about them, we’d show them off, we’d flaunt them and embrace them, and shout from the mountain tops, “my body is messed up and I can’t wait to tell you all about it!!!!!” Think about it. When you have something you are really proud of, what do you do with it? You worship and cherish it. You keep it in mint condish as best you can. If we approached our not so glamorous physical or mental ailments as such, maybe we’d reverse psychology ourselves into taking better care of whatever it is we’re dealing with. Maybe we’d stop thinking twice about taking our medications, or bolusing in public. Maybe we’d just do it and say, “Yeah, what? That’s my 87 reading, check that perfect shit out. You jealous?” A sense of pride in all of the work we do to keep our rinky dink machines as well oiled as possible could carry us a long way.
So cheers to you, Jason. Thank you for sharing, thank you for listening, thank you for thinking that I’m cool for having diabetes and thank you for enlightening me on the world of factor 8-less peeps. Welcome to our family, I hope you’re willing to hang with us for a while. You truly are a special dude.