That’s what I’m calling it now. That’s the official diagnosis, along with fourth nerve palsy and whatever the MRI I had last week showed (here’s the impression: Small focus of T2/FLAIR signal hyperintensity in the left subcortical temporal lobe, nonspecific.)
I’m calling it a TBI because that’s what it is. Yes, it’s a head injury. And a concussion. But apparently in medical language land it’s a TBI. And I’ve got a bunch of corollary diagnoses that are the hangers-on from the TBI.
Naming things helps. Big part of how humans make sense of the world. Language offers structure and humans crave structure.
Ok, this wasn’t meant to be a meditation on linguistics, though I may write about that in the future.
Back to the topic - TBI.
I wrote recently about the mental health effects of the TBI. This isn’t about that. This is about the physical effects and how it feels on the 2 year anniversary of…the incident.
My balance is better. Credit to the rehab at Rusk. Credit to Pilates.
Vision is still a problem. The convergence insufficiency makes reading almost impossible. The prism glasses require that I adjust to them. That sounds like work. I can’t take on too much more work. Audio is better for my brain than video. but still invites problems.
Brain overstimulation is real. Lots of things emit just too much for my brain to handle. That’s limiting what I can experience.
Light sensitivity is still with me. I wear sunglasses (which I hate to wear) any time I go outside while the sun is out. The light makes my eyes hurt. Actual eye pain.
Sound sensitivity is still with me, and I don’t have a ready solution for that. Maybe I need to keep my bluetooth headphones in. I’ll have to adjust to that. I always have audio on - whether music, NPR or podcasts. I need to keep a headphone in one ear all the time, I think. It might help block out some of the sounds that have been bedeviling me.
Those - and the pain - are pretty much constant. There’s been no meaningful change. They don’t get better and they don’t get worse. That’s inaccurate. They do get worse from stress, anxiety and pain. But the headpain always returns to its baseline. It rules from 4:00 on. Used to be 3:00 but I’ve noticed a shift since Nick’s injury. Then again the pain slammed me today at 2:00 like a fish slammed on a riverbank. Who knows - I’m still trying to figure out how to get my mind to control - or at least influence - my brain. I’ve upped my daily gabapentin dose. I’m still under the ceiling - but not by much.
One thing that seems to have gotten worse is my ability to follow storylines, identify characters and basically track with what we’re watching. Nick explains to me all the time what’s going on, and I’m grateful for it. I feel like I was able to track things better earlier in this experience. Less so now. I find that odd - I shouldn’t be moving backwards. Could be a function of the situation we’re in now, where I’m doing so much more, sleeping less. Maybe. I think my ability has actually degraded. I don’t think it’s just our current circumstances.
It’s like the TBI narrowed my world. It narrowed what I could experience. Its limited what I can do. It’s forced me to figure out how who I am and what I mean in a context that’s wildly different from the one I’ve lived in for my entire life. Where there were never barriers now barriers exist everywhere. Where there was nothing I couldn’t do now I actually have to say “sorry, I can’t.” Massive impacts on my social, cultural and intellectual lives. Social is better, but the others may be forever changed. I feel like I’m in a concertina, and the hands that are playing it keep bringing it together. Not expanding. Contracting.
Fuck.
I have no choice. This is my reality.
Let’s end on a better note. Today was the first day of early voting in NYC, and I was at the polling place at 8:30. It was joyful. No line when I got there but a long line was forming when I left. Then I did a text banking session and there were so many volunteers that we burned through all the campaigns in an hour (vs the planned 2-3.) It’s heartening to see how many people were waiting in line to vote and how many volunteers show up to do the work. I think I’ll do another session tomorrow. We can do this. We MUST do this. The world is depending on us. Harris/Walz. #We Understand the Assignment.
Appreciate you, beloved readers.