Growing up, everyone has a hero. Some girls watch The Little Mermaid, flick their long hair over their shoulders, tie their ankles together with oversized Scrunchies and flail around on the floor as if they’re desperately immobile on dry land. Some boys scoop mud onto their fingers and drag it across their cheeks preparing for battle as Rambo. There’s a role model for everyone: Batman, Belle, Spiderman, Cinderella…Name any given one and they’ll resonate with a child somewhere and give them a sense of importance and belonging far before they’ve reached an age where they can tackle the world themselves.
Even in my Dinglehopper days, my clan was The X-Men.
Over my decade of involvement with the Cystic Fibrosis community, I have been blessed to know a handful of patients who I affectionately refer to as “my fellow mutants”. I didn’t grow up in the age of social media…Didn’t own my first computer until I was 18 years old or cell phone until I was 21…So the “sick kid” part of me remained very isolated. I knew my mutants had to be out there, wading through the rest of humanity looking for each other, but it was a long time before I met my first CFers on MySpace and then finally, years later, in person. CFers who, like myself, chanced living against the rule of steering clear of one another for fear of the potential risks involved for an opportunity to feel wholly understood and accepted. CFers who I have traveled with, traveled for, opened my home to, stood beside while they got married, held onto while navigating survivor’s guilt for others like us who were taken too soon and so much more. So when asked by those on the outside why we would break a rule like that, a rule that for all intents and purposes was established to keep us alive, it’s easy to say, but difficult to truly convey, that this camaraderie does not come from a Superman complex of thinking that we’re above the danger presented by being around each other. It comes from a deep-seated longing to be understood and accepted as “normal” while leading a lifestyle that is anything but…And the overwhelming comfort that comes with experiencing firsthand, in the midst of CF hell on Earth, how it feels when someone who truly gets it reaches for your hand and refuses to let go.
Four months ago, I learned this on a whole new level.
I met Zack just over a year ago in a Cystic Fibrosis Facebook forum where I suggested that while Western medicine is extremely beneficial in staying well, it is not the be all and end all option. Over 250 fellow CFers annihilated my idea, remarking how ignorant, foolish and irresponsible I was for thinking outside of the box. All except one. Zack stood up to every single one of them for a stranger half a country away that he had never even met and in doing so, he changed my life; It may have taken nine months for us to meet face-to-face and decide to date, but since the first time I walked off of the plane into his arms, I haven’t looked back.
So to those of you who have stepped in…Some because you have to, some because you love us and want us safe and some simply because you personally disagree…I need you to know that we hear you. We appreciate you. We love that you care enough to want the best for us. And we take into account everything that you have to say. But not enough to give “us” up. Because with “us”, we are not mutants. There is no fear that the other will lack understanding and bail. There is no sense of neglect between us due to the hours spent concentrating on the therapies required to keep us healthy. There is no awkwardness in comparing even the most cringe-worthy of CF stories. There is no going to bed angry. There is, however, seeing him at his worst and still thinking he’s the most beautiful human being I’ve ever known. There is feeling ashamed to show him MY worst, then finding out more and more every day how unconditionally loved I am. There is him pulling me into his kitchen to dance in our sock feet while I ugly cry because we have to say goodbye again. There is beauty in not only days at the beach, at dinner with our families and at theme parks and concerts, but in breathing treatments, grocery shopping for two humans whose caloric intake rivals a football team’s, organizing medical bills and taking such care to disinfect surface areas that I’m certain we’ve single-handedly put the Lysol children through university. There is taking the disapproving glances, the unsure future and the weeks-at-a-time of phone calls instead of hugs with a grain of salt for the mornings when I get to wake up beside my love, my best friend, my rock, my encourager, my protector and my teammate in believing that the risk factor is no match against our power to change things for the better.
There is no sense of rebellion that is worth risking your life for. But there IS a love. And for me, without one like ours, there is no life anyway ❤️