I’m Savannah. I’m 18, and I love loud musics, red lipstick, art, and superheroes. Superheroes are one of my greatest inspirations, because I love the idea of ordinary people who where not only given the opportunity to make a difference, but made a choice to do so. Superheroes are the inspiration behind “Actual Mutants”. I love the X-Men, and the concept of a gene that grants powers from telepathy to blue fur. I have alway been fascinated by genetics, and by the fact that no two sets of DNA are the same. It’s a cliche, but it’s true: we all are unique, and that holds power. We are all capable of heroism, no matter who or what or where you are. Telepathy and control of metal may not be real, but the ability to enact change and influence the world is.
Rare disease entered my life a a little over three years ago. (You can check out my story here.) I’ve always loved superheroes, and they only became more of a support when I got sick. After all, we all like to pretend we’re invincible, right? But recently I’ve realized that I don’t like superheroes because they’re unstoppable, it’s because often, they’re all too human.
You can’t choose the cards you’re dealt, you just choose how you play them. Throughout my life and my journey with rare and complex disease specifically, I’ve been told many times that I was brave. And when it first started, I didn’t agree, because it isn’t a choice. I was stuck on the classic definition of bravery. You know, the person who chooses to go out and start a quest to slay a dragon- the epic sort of bravery that we are all familiar with. And yet, with disease, there is no choice. No storybook moment where you decide to take on an unconquerable obstacle. With disease, both the patient and families are shouldering a burden that they never planned to, with no option to turn back. And bravery in that world is very different. It’s continuing when all you want to do is stop. It’s evaluating options that you never though might be possible. And sometimes, it’s facing reality and then moving on from what is lost to adaptations and things found.
I began this blog to share my own experiences, and provide support and resources for patients and caregivers. I have spoken at multiple events on the importance of self-advocacy, advocated for accessibility at my school, and have been featured by several publications and organizations- including The Mighty, The Global Genes Project, Sick Chicks, Sweet Lemon Pies, and the U.S Pain foundation. Moving forward, I am increasingly inspired to work with both patients and physicians to educate on long term health problems, assist in enacting policy changes, and providing information and empowerment for patients and caregivers.
Through rare disease, I’ve found a new definition of courage- the kind that doesn’t require a battlefield, or a declaration of bravery, just another step. Everyone has something in their lives that scares them. Maybe that’s why we love superheroes- they show us not only that winning is possible, but that heroes get scared too.