I lost most of my friends when I got sick. Unfortunately, this isn’t uncommon for chronically ill kids and teens. But then I got really fucking lucky. I truly have the best friends and I am forever grateful for that. When I lost all my friends, I thought no one would ever want to be friends with me because I’m sick and disabled. Turns out that’s entirely untrue. My friends not only love me unconditionally, regardless of my disability, but they also recognize that it is a part of who I am and they empower that part too.
Amplify me. Trust my experience. When I tell you something is inaccessible, you don’t blame me, you don’t question it, you help me mitigate it.
Laugh about it with me. I met someone recently, and he was primed for our meeting by being told no wheelchair jokes. But you should know by now, all the wheelchair jokes.
Can I drift? Hell yeah, I can drift! When I make morbid jokes that would make my mother cry you laugh and bring it to an even higher level of morbid. We make a good team, you and I and morbidity.
Ask about inaccessibility first so I’m not always the one asking. You learn my needs. You know what to look for in a doorway, an aisle, a street corner, a parking lot. And i’m not the only one thinking about it. There is so much more room for me to think about the way your laugh lights up my day or the way the sun catches the edges of your eyelashes, painting them orange.
Let me trust you. You have proven. Time and time again, you are a safety net. I can let go here. I can take risks here. I can rest here. I can live without fear here. You are fearlessness.
Let you love me. (I know that sounds narcissistic, but hear me out.) It used to feel like loving me was a binding contract with hurt. One that you didn’t know you were signing. Loving me means you’re signing up to learn the pain of this disease, something only I should know of.
But you squeeze me tighter and say everybody dies. shit happens. here for a good time not a long time. maybe i’m starting to believe love is stronger than pain, even when the pain is at the strongest. You’ve instilled that belief in me.
You always take the first bite so we know if they listened when I said no cinnamon. Always taking the first step up the muddy and rocky path to find the most sturdy path. Jumping in naked to the lake first.
You let me be a bitter, angry, lazy cripple. I don’t need to be inspirational with you. The room isn’t primed with toxic positivity. Here we blessed it with honesty and love and life and more love.
Hear me when I say no or I can’t do something. But also trust when I say yes. I know my body best, thank you for always encouraging me to live just as fully as possible.
You cross bridges, climb up bridges, and jump off bridges for me. And then tell me to jump off a bridge too. And cheer me on when I do. Literally and figuratively.
Teach me to pole dance on my IV poles. And keep dancing until the heart rate monitors go off.
You’re always ready with an almond milk vanilla latte from JC Beans and an escape. You create a space for me to breathe. And cry. And laugh. And hurt. And love.
You get it. You know what I mean when I tell you it feels like my body is falling apart from the inside out. You understand.
Encourage me to change the world and be my biggest cheerleaders, my campaign managers since elementary school, my system disruptors, my change makers, my team. But you also encourage me to just be nineteen and irresponsible and live without the weight of the world in my hands. Your hands joined me and helpled me hold that weight. Together we ran.
They say it takes a village to raise a child. I don’t know if I’m raised yet or if that came and gone long ago, but I like my village. Thank you.