February 2021, or, Functionally Speaking

I bought a wheelchair yesterday.

There's a piece I read a while back about how disability unmakes you. Its cold hopelessness, its angry isolation, is something I carry in the dark places where like calls to like. The author walks us through how the loss of his body is the loss of his self in a way, something I am also living, because I am losing my body too, and we are dual-natured creatures, the eternal married to the animal. 

I'm so sick of constantly feeling like I am a hairsbreadth from falling over.

So I bought a wheelchair. An electric wheelchair. It's a measure for backups and travel, and also a stopgap; I am simultaneously beginning the much longer process of being fitted for a custom powerchair, but that takes three to six months (three to six months?! I hear you say in disbelief. Yes. Three to six months) and those chairs are comfortable but enormous. This is a lighter, off the shelf version that is still powered, so it's meant to be more portable and convenient (convenient = you don't need to literally buy an entire vehicle to schlep it around), and you would be shocked at how difficult it is to find one that isn't totally hideous. 

I'm generally a pretty practical person, but this has been a sticking point for me during the research process. Why are they all so terrible looking? Is it not enough just to need one? Must I also use something obnoxiously branded or bright yellow or that looks like it's from a 1995 hospital TV drama? Hear me out, here. When is the last time you wanted to be out and about in something you thought was ugly and not at all your style? Or something that didn't match your clothing choices but was nevertheless the most visible part of you? 

Before, I used to have some control over how I looked to people. I could stand out. I could blend in. I could go to dinner with my husband in a skintight acid-green leopard print onesie (that is a lie. He would never go to dinner with me if I had that on). But now, even if I wore the onesie, the first thing anyone would see would still be the chair and I don't even get to decide what it looks like.

And I know, I know, the chair is a marvel of modern engineering. It's an incredible blessing that I can even afford one, let alone that I also have the health insurance to eventually have two. Most disabled people in this world don't have the luxury of options. Not everything is about aesthetics (lol I have literally walked through the hallways of my workplace many times with other people's bodily fluids on me so the fact that I torture myself with this particular line is hilarious). But just like joy and grief can be bedfellows, I can hold my gratitude and my deep, bleak resentment in the same hand. The ratio changes from day to day. I'm hoping when this thing arrives, my innate stubborn practicality will rear its head, and I can leave the resentment behind. 

The loss remains, though. When you are healthy, you don't think about how essential expression of your eternal self takes place through this physical vessel you inhabit; you use your body to do the things that matter to you. Your body carries you through this world and it's the avenue by which you experience and interact with everything. And it's also how the world interacts with you. 

So yes, the chair is emblematic of a hideous loss of self. Because while I remain a Christian, a doctor, someone who loves beauty, someone who hates injustice, a committed wife-friend-sister-daughter-person, the ways I can actually express those things are dwindling, and no one teaches you how to process the grief of such dislocation. I'm the same person but I can't do any of the things that used to let me feel like I was living authentically. So... functionally speaking... who am I now?

How do I even figure that out?