I have what some might call a bad habit. I can easily spend hours a day playing video games.
My favorites are role-playing games that allow me to create my own character, down to the most minute details of their appearance and backstory. It’s common for people to seek this form of escapism, but I like to put my own little twist on it: I imagine that all of my characters have cystic fibrosis (CF).
I am aware that this is kind of a weird thing to do. Video games, at least according to conversations I’ve had, should be my complete escape from a life full of complicated machinery and medications. Here’s the thing, though: I can’t conceptualize a life without cystic fibrosis, for bad or good.
Who I am as a person has been shaped and defined by CF to the extent that I can’t fantasize about not having it. I wouldn’t be me. The “Elizabeth” that exists is “Elizabeth with CF,” and any future change to this state of being is so far ahead that I can’t visualize it.
I like to see myself in stories as I am now. That’s why role-playing games matter to me. Games with set characters don’t allow flexibility in constructing your place in the world. It can be a challenge — what would life with cystic fibrosis be like in a magical world or a futuristic realm where aliens exist? How would I survive, and who would I become? Perhaps I wouldn’t need to use my nebulizers? In my games, I can be the protagonist, and that is priceless to me.
It all ties back to the work that I want to do. I shouldn’t have to create space for people like me in stories. I should be able to see them face-to-face. Why shouldn’t the main character in a video game, book, or movie have cystic fibrosis? And as well as the disease giving complexity to the character, it could provide a richer narrative to the story. Imagine having CF and attending magic school. Blasting aliens across the galaxy, befriending them, or saving humanity.
I know that I won’t see that type of content unless I create it myself, so here I am. I have to lay my soul bare to do so, but it’s worth it. Someday in the future, someone will pick up one of my novels and discover a hero who happens to have CF.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.