2024_06_24 Ability, Agency?

I take a sip from my mug and throw my hand up to try to stop the tea that sloshes from the corners of my mouth. 

It happens at least a few times a week now, but I never gave it much thought. I've been telling myself for the last two years that it's not that I can't control the muscles of my face, I just… sometimes don't.

Like when I'm “lazy with my movements” and bump into walls. 

I have the muscles to perform physical therapy exercises, if not the stamina. I tell everyone about the six-pack I had before my symptoms began. Sure, a physician PT noted muscle wasting in my scapular region– whatever muscles are innervated from c5/c6. But if I had the stamina to exercise I could fix that easily! (It's more complicated than that.)

I tell myself that learning about my condition, its possible causes and mitigating factors, gives me a measure of control... In some ways it does. But in my dreams at night I'm holding up a line because I move too slowly, and no one much cares why.

_________

I thought by now I'd come to terms with my disability, but have I? Sometimes–now– I catch myself living like I'm just weathering an interim; putting off things that matter in anticipation of some future when they will be easier. 

I believe what I have is treatable. But that's no guarantee it will get treated, or that treatment will be a success.

So I recall something a good friend told me years ago. I'd been in a new apartment for a couple weeks, and I had this inspiration that the living room would look beautiful with a simple painted border on the walls. But if I did that, I'd have to paint over it when I left, and I didn't expect to stay more than a year... Was it worth the trouble?

My friend said yes! Emphatically, yes! For a month or a year, this was the space I would be living in. In his experience, personal touches, investments of care, made the difference between merely existing in a space and enjoying one’s time there.

Life is not just a process of waiting to be otherwise. There is opportunity for enjoyment, and whatever that requires of us… well, it can be worth it. One way to know.

I go out to work in the garden for the fifteen minutes I can manage before nausea, body aches, and lightheadedness force me back inside to lie on the couch. I don’t want to sound like I am striving to do what I could before; I am careful not to push beyond my limits, and I make concessions to my body. I am constructing an automated drip irrigation system, one small step at a time, so I don’t have to water manually. But every time I hit my limit… even with the frustration of having to stop, it makes me feel strong. By contrast, there are days when I don’t try anything because I can’t focus my mind to do so. I give myself full permission to sleep or play puzzle adventure games on my phone; but I do resent the cognitive disability far more than the physical. Those days melt away unmarked, an interim.

I was happy every time I looked at that lime green border.