“I don’t have the same control overmownody.” I sit even taller, punctuating my words. “Over. My. Own. Body. To other people, I lookfine. Yet I feel anything but. And sure, I’m better now than I was a few weeks ago, but for how long? Everyone expects me to be normal. Meanwhile, I have no idea what’s coming in the future. Will I wake up one day and not be able to move my legs ever again? I don’t know. My brain and ability are just going to…keep slipping away from me.”
I’m not sure how much of that Ellie has heard or read off my lips, but she pats my arm empathetically and lets me keep rambling on.
“I didn’t think anything like this could ever happen to me. That would completely mess up my future in the most uncertain of ways. And this disease isn’t something a lot of people know about, like getting in a car crash or having cancer. You get what I’m saying? Why couldn’t this be something that people understood better?”
I regret not having my shirt on now to wipe away a tear that breaks free. Ellie reaches up to dry my cheek with her hand.
“You’re stillyou,” she says. “And I’m sure it’s going to take some time to process, but you’re going to get a handle on this and become evenmoreyourself. You will have an incredible future; it just might not look exactly how you originally thought.”
“Yeah, I guess.”
“Not on the same level at all, but I didn’t expect to be at Amber. That’s not what I wanted. But now I get to be here. With you.” She traces a finger down my arm.
A smile fights its way across my face. “Yeah, I never expected I’d be here with you…” I widen my eyes to try to get them to stop watering. “But I’m crying all over your bed even though you look amazing injust thatright now.”
“Oh, this?” Ellie laughs, pulling her hands to the straps to playfully show off her bra. “You can see this again.”
I blush from head to toe. “At least your roommates couldn’t hear my whole sob story.”
“Well, if Alex has her hearing aids in…” Ellie starts but notices my alarm. “Though she doesn’t usually wear them at home; don’t worry!”
“Ellie?” I say her name like a question because I want her to understand the gravity of the one I’m about to ask. Tracing a finger behind her ear, to the spot where she wants to get that tattoo, I ask, “I know you’re so proud of your disability, but am I allowed to want a cure for mine?”
She takes a moment to gather her thoughts. “I think it depends on how you’re approaching pride. Does it mean that you’re proud that your body is fighting against you? No, I don’t think it means that at all.”
“Exactly, because this allsucks.”
“Yes, it sucks. And you can acknowledge that. Don’t pretend everything is perfect all the time.”
“ ’Cause it’s not. I’d do anything to ditch this diagnosis.”
“But you’re not lesser-than for having it. You know that, right?” Ellie considers what to say next. “Cures are a tricky thing. Like, I don’t want a cure for my deafness. I don’t want to live in a world where the desire is to eliminate all disabilities. But at the same time, I don’t want people to have to live with pain or symptoms that could be improved.”
“Exactly.”
“We can go to the walks, and raise awareness, and fundraise, and petition for access, and so much more.” She pauses. “Just don’t put your life on hold waiting for something that may never come.”
“Right.” It’s hard not to. And sometimes the detours seem unavoidable. This year was entirely interrupted. I didn’t get to make a choice, but this is my life now.
“I think where pride comes in is that, through it all, you accept yourself as you are,” Ellie says. “Which is a radical choice when you exist in a society that is actively working against you.”
I nod, impressed. When she discusses all this, it’s like a fire ignites within her. “Acceptance…I’m not sure if I’m quite there in the stages of grief yet.” But what Ellie is saying makes sense. I can’t just sit around being miserable. “I knew you’d be able to help make sense of it,” I say.
“Disability advocacy is important to me. I talk about this stuff with my friends all the time.”
“I’m glad you were ‘in the mood to educate me right now,’ ” I tease. “Do you remember saying that to me when we first met? I donotthink you liked me then…”
“Well, you know, now you understand more about the concept of fatigue,” she jokes, dragging out her words. “To be fair, I didn’t really want to likeanyonethat first day. But I could already tell I had a soft spot for you.”
“That’s a relief.”
“And then, after we got our lunch spot, part of me kept worrying you’d go running back to the soccer guys, and I wasn’t ready for that.”
“Yeah…soccer.” This is something else I’m dreading figuring out. “I was never gonna, like, go pro. I thought I’d at least play through college, but after last season, I never got any scouting opportunities, especially since I didn’t get to sign up for club this year. Hopefully I’ll still get play time for Amber this spring…” I say, trailing off.
Ellie brushes my hair back, listening intently as I try to make sense of my thoughts.
“I have to find a way to keep moving. Put my energy into something I really care about and see where that leads me. But I don’t know…what.”
