Bargaining With My Body

Life for me over the last few months has been a series of negotiations. Do I chance walking through the grocery store and hope my knees don’t buckle? Should I lift this box and pray my back doesn’t pop regardless of the rods holding it in place? Do I join my family outside and try to beat the heat intolerance that will trigger my dysautonomia?
These are just a handful of the choices I have to make as I navigate life in a body that doesn’t always cooperate. Last year, I wrote an entire blog looking at the things I have to consider when I decide to go out, whether that’s running errands, spending time with family, or meeting up with friends. You can read that blog here: The Cost of Showing Up. In that post, I looked at what everyday activities can cost me physically.
As the last year has passed, those little fees have started to shift into bargains I’m making with my body so I don’t have to continue worrying quite so much about the cost of participating with my family and friends or doing the things I love and enjoy. If there’s one thing the last year has taught me, it’s that the cost isn’t always attached to big events. Sometimes it’s woven into the smallest decisions of my day.
Those are the bargains I find myself making more often now. Not necessarily about whether I participate, but about how I do it. I’m learning that sometimes keeping my independence means changing the way I move through something rather than forcing my body to do it the way it always has, or the way I feel it should.
The biggest demand my body has been making lately is that I use my wheelchair more often. As I’ve been walking through grocery stores, navigating farmers’ markets, and zipping around school buildings, I’ve begun experiencing more pain in my lower back that, in turn, has been affecting my legs with numbness, shooting pains, or a delay in responsiveness. So when excessive walking is required, especially in public places where a sudden buckle or misstep carries its own risks, I’ve started defaulting to my wheelchair.
There are also things I’m finding myself asking for help with much quicker than I used to. Cleaning up my classroom, for example, involved not only a lot of walking, but lifting, reaching, and repetitive movements. When spreading those tasks over a stretch of time either didn’t do the trick or simply wasn’t an option because of time restrictions, I had to be more willing to ask for help.
The reality of my body’s changing limitations is that things that used to feel normal or automatic are becoming things I have to “check” with my body first. And more and more frequently, it tells me no.
For someone who values my independence, that can feel like theft. Growing up with a disability, you get accustomed to a certain level of humility. It’s inevitable when your body regularly stops working in front of other people. But when your body starts changing the terms and conditions on you, even the pride you’ve managed to hold onto can feel challenged.
I don’t like asking for help. I don’t like having to sit down while other people work around me. I don’t particularly enjoy using my wheelchair in public and then watching people stare when I stand up to get out of it, as if mobility has to be all or nothing in order to make sense. These small practical concessions can feel degrading, even when I know they’re also the things helping me hold onto the independence I’m so afraid of losing.
That’s probably the hardest part of the bargain.
My biggest fear as my body starts demanding more from me is that people will begin trusting me with less, or that opportunities will quietly be handed to someone whose body doesn’t require the same accommodations. I can’t control whether people make those assumptions. What I can control is how I respond to the changing terms my body keeps handing me.
So I’m learning to bargain differently.
I’m learning that adaptation doesn’t always look like doing less. Sometimes it looks like finding a different way to get the same work done. I lean heavily on my family, friends, and support team, as well as technology, organization, and whatever other resources I have available to make tasks more manageable and to save my body for the things that actually require me to physically be there. If a tool can cut out unnecessary steps (physical or otherwise), reduce repetitive motion, or help me work smarter instead of harder, I’m going to use it.
There’s a grief in realizing that something you once did without thinking may now require planning, help, or a completely different approach. I don’t think adapting makes that grief disappear. I’m starting to accept that both things can be true at once. I can hate that the terms have changed and still figure out how to live within the new ones.
The wheelchair, the extra set of hands, the break I didn’t want to take, or the task I choose to approach another way aren’t necessarily signs that I’m losing ground. Sometimes they’re the very things that let me keep doing the work, spending time with the people I love, and showing up for the parts of life that matter to me.
I may not like the negotiations. I may grumble through more than a few of them. But if my body insists on changing the rules, then I suppose I’ll just have to keep finding new ways to play the game.