I’ve sometimes found myself wondering if there is any similarity between opening one’s heart up to someone else and opening one’s spine for a spinal tap. It would be wrong of me to act like I at all understand the pain and fear of a thousand “minimally invasive” procedures or the ways that hospital wristbands leave scars that run deeper than skin. But I do love someone who has been there and who has seen and felt things I won’t ever know.
My girlfriend was diagnosed with a rare neuroimmune disorder when she was very young—too young to really get what that meant. It changed her life, her destiny, and the very fabric of who she is. I’ve seen her story written out across countless different publications and websites, but none of that ever really reaches me. This community isn’t my world, but she is, and so I’ve come to my own understanding of her story.
When we talk about her childhood, there are a lot of questions that I can’t always bring myself to ask. Could you walk then? Did it hurt when you were at Disney? When did you realize you might die?
I love her more than I love myself, but the worlds we grew up in couldn’t have been more different. Death to me has always been something that just happens to people sometimes, not a ghost that haunts every memory. Hospitals are where you go when Grandma falls again, not the place where you stay for long after every flower wilts and every balloon loses air. Doctors are people who can answer stupid questions, not just an ignorant avenue for recommendations to specialists who might not know any better. Pain is the exception, not the rule.
The first time our worlds collided was at an infusion center that smelled like cologne and coffee. She was the youngest person in the building by at least twenty years. They gave her a pillow for her arm and spent close to twenty minutes poking around for a vein. She could operate the little machine better than they could, and she knew the answer to every question before it was asked.
I remember thinking to myself that this is horrible, but she said it was routine—chemotherapy twice a year for more than a decade. It’s horrible that it’s routine, and I hate the way I had to close my eyes when they finally got the needle in.
I read to her for hours during the infusion—my stories and books. I didn’t let myself cry even when I wanted to, because this was supposed to be a good thing, to be hurt horribly in order to live. I didn’t have a right to be scared when she had been scared for too long.
She’s a strong person, stronger than me. She could barely walk after, but she was still beautiful even in fluorescent lighting and with a sheen of sweat on her face.
It’s funny that when we first started dating, she was afraid of what she was signing me up for. She didn’t think she could ever be loved. I didn’t think I could ever love someone so much as her.
Another round of chemo is coming up soon—the second in a cycle that’s going to be a routine part of my life too—and I’m not as scared this time. I know I’ve made the right choice.
