What I was told, and how and when, still really ticks me off when I think about it. The ER doctor that night told me to take it easy (undefined) for a "couple" of days. I should be fine in a "few" days. The neurologist >2 months later told me "try not to think." Neither provided any further guidance, context, or definition.

I mean, some things are obvious. No football. No jumping or dancing. Don't do anything that will make the brain jiggle around in your head.

But what about framing art? I had a bunch of art to frame, and was lucky to get an extra few days to get it done before delivering. Driving to another state to shop for framing materials? Cleaning stuff out of my totaled car? Hanging out with too many writers in a noisy restaurant?

The accident happened on a Wednesday. The driving & shopping & writerly networking happened on the following Saturday. The framing, on Sunday. Technically I'd taken a 'couple' of days off, though they'd been stressful, filled with talking to insurance, trying to get the bank to which I owed money on the car on the phone, rescheduling appointments, worrying about framing a bunch of art in time.

It would be 4 weeks before I'd see another doctor – since that "few days" had stretched into weeks – and get a neurologist referral, and another month before I'd see that neurologist, and a year before that neurologist would refer me to the speech therapist who would tell me the things I should have been heard from the get-go. 

Such as:

• Filtering out background sound is a skill. Multi-tasking is a skill. A blow to the head can screw any of that stuff up, like how damage to a brain can affect someone's ability to walk or talk.
• But my TBI is MILD (y'know, like salsa, except not). No damage showed on the MRIs. But the brain is more than tissue & goo. It's connections and pathways carved out over a lifetime. Those connections can get screwed up, too, and that doesn't show up on a regular MRI.
• After a concussion, tasks and skills take more brain resources than previously, AND the brain has fewer resources available. So it's a double whammy.

She drew something that finally made it click, drove home what was going on. I've fancied up on that concept with a stock art image and some fun in Photoshop.

Combine that with the knowledge that even blocking out background noise is a skill, well. Maybe going to a restaurant with writers doesn't count as "rest."

For a long time after the accident, I couldn't listen to music while driving. While there's an argument to be made that nobody should do this, I must emphasize that music kept me engaged with driving (as it did with many other tasks – Normal me really had a hard time with silence). Prior to the accident, I would get severely bored and actually have a harder time paying attention to driving in silence. I'll get into this more at some point – one of the posts I have planned gets into the auditory processing issues I had.

One of my analogies is that it's like a computer's directory of its hard drive. The data may still be there, and the hard drive may spin and read just fine, but it's not sure where anything is. The search function is useless.

Imagine searching your house for your keys, where those keys could be ANYWHERE. An underwear drawer, an ice cube tray in the freezer, inside your pillow, in the toilet fill-tank, the bottom of an unopened bag of cat kibble. That's what my brain felt like, a LOT. Like it was searching everywhere for everything.

It's exhausting, and that's the most frustrating thing. It wasn't that I couldn't do things at all. It was that EVERYTHING was so much harder. It all felt like taking the GREs after applying for a mortgage after spending the day in line at the DMV only to discover you still don't have all the right forms and having a bad headache the entire time.
​
So you get a brain with limited resources using a bunch of them up just trying to find its shit. And it knows that shit is in there somewhere, so it keeps looking, and the frustration starts taking up resources, too. Something like this, but probably a whole lot worse.



I have felt this, in my head.

​"Too bad we can't image that," I said to this awesome speech therapist who with a few scribbles finally gave me answers and things I could understand.

Well, turns out there is. Diffuse Tensor Imaging. But, at least at the time, it was only used for research because it was so GDMF expensive. I think it's become accessible for some patients with a lot of money in a small handful of places across the country now.

I think it would have been really helpful for me, and would help so many other brain injury folks (plus folks who are non-neurotypical for other reasons!) I took a bunch of neuro-psych and related tests, in trying to figure out what would help me, as well as apply for disability / state assistance. And not a single one of those tests came anywhere near real-life circumstances or revealing the reality of what was going on in my head.

Diffuse tensor imaging is fascinating and lovely, by the way. It might influence some paintings someday. I couldn't find any wikimedia or stock photos to share here, so I strongly encourage you to go google it.  

Disclaimer: I'm not a doctor and this is based on my rudimentary understanding of things plus apparent relevance to my experience. Brains & brain injury have a long way to go before we fully understand them, and there are many medical professionals who don't like to let on to that.

I have no idea what I'm doing anymore. At least it feels that way. It used to feel different, but in retrospect, maybe I didn't know then, either. Maybe middle age is when most folks finally admit that they never really knew. And it's taken me several years of middle age to get there on top of that. 

But for a while now, I'd keep developing a plan, a basic framework that felt possible, do-able. And I'd maybe get off to a good start… and then just fall off a cliff. All my energies - mental, physical, & emotional – have been about as consistent and reliable as … I don't even know. Let's just say "not very" or more accurately "not at all" for now. I'm not sure of the point of this post, other than to just get something down, so please forgive me if this gets rambling.

Around this time last year, I was climbing out of 3+ years of post concussion syndrome, just starting to re-enter 'normal' life, and figure out how to stand on my own two feet (figuratively) again, when the seriousness of COVID-19 became clear. I'd had 3+ years of mostly isolation due to sensory issues, and a whole lot of depression and anxiety to go with it, with extra circumstances making recovery even harder, more uncertain, and more drawn out. 

So I was already / still on wobbly ground when the world went topsy-turvy. While I skew introverted and don't need a lot of social interaction, the amount I do need, I really really need. I've lived alone for the past year, and have been trying to re-establish the art-biz self-employment thing. I might have sough employment out in the world by now if it hadn't been for the pandemic. The mental/ emotional health took another hard hit. THEN… as if that weren't enough, without getting into details,… something tends to happen to a female body when it reaches the early 50s, and yeah, that thing happened over this past year.

March is Brain Injury Awareness Month, and while I'm doing SO much better, I might try to detail some of the worst of my experience. Now that I have a lot of brain back, and some energies, I might even get somewhere with it.

For now, peace and love to y'all. Hopefully see you again soon. Stay safe.

OH! And PS: My Orange cats had a birthday yesterday, and this post needs a photo. So here they are:  





…and many mooooooore.
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Still working on getting my headspace into regular posting. SO MANY THINGS going on. The rollercoaster of life and the world have been a bit much, to say the least. I don't think anyone's having a great time of it, and the curves keep coming. Together we can help each other through.  Along those lines, I want to an album that gives me great joy and strength:

While We're At It - The Mighty Mighty Bosstones
This album came out two years ago today (6/15). It played a huge part in generating optimism through the post-concussion syndrome & mTBI recovery.

I posted a review at iTunes, but also I've wanted to do mini reviews of each song ever since. For a range of reasons it never quite happened, so I'm starting now.

Track 1: Green Bay, Wisconsin.

From the opening guitar rift and "WhoooO!" straight through to the "Ha Ha Haa!" at the end, this song is joyous ska celebration. I defy you to listen to this and not want to dance. No apologies, regrets, shame, or remorse.

https://www.youtube.com/watch?v=sx7VN3zZ0ho
​

It's easier to write about this now that it's much less of an issue for me personally, but I'll write it anyway in the hopes that it will help someone down the line understand something about brain injury.

It's an analogy I came up with that I hope can help those who think anything in life can be just "powered through."

If my brain was a car, before the accident it got 45 mpg, cruised at 75 mph with no problem and often, could go all day and only needed oil changes at 3500 mile intervals. Maybe with age I needed to keep some extra oil around just in case, or brake fluid, and somedays it could only do 8 hours driving, or was more like 40 mpg some days, or needed some extra sleep or time in the garage, but otherwise, it was in good shape. Normal fluctuations. Maybe some years ago my A-game would have been 55mpg, 90mph, and oil changes every 4500 miles.

In the months right after the accident, I was lucky if it got 5 mpg, went 20 mph at best on a good day, could hardly run more than an hour at a time, and needed an oil change every 50 miles. 

​


To the outside observer, that car can still go, and at any given moment might appear to be running just fine. And maybe it is, well enough & kinda sorta sometimes, for quick errands and short trips. But if you want it to run around town 2-3 days in a row when it hasn't refueled or got that oil change to recover from the first? It's gonna be a problem. Or if you want that car to drive a cross-country road-trip, you're in BIG trouble at worst, rolling some seriously dicey dice at best.

Here the around-town-driving is like every day expectations. The cross-country road trip would be a full time job, plus staying on top of housework, and maintaining a halfway decent social life.

So while the hand did really well in the first few days of healing, that's slowed down by a bit. Maybe possibly I popped a stitch or two maybe possibly while oil painting last Friday because maybe possibly using a palette knife maybe possibly puts pressure on that section of hand…

It's fine, and the stitches came out last Saturday, but I'm resigned to watercolors, inks, and acrylics until the healing bits are a bit stronger. Those are still a challenge as I still need to keep the area dry, but also try keep it uncovered and exposed to air. Wooo.

​Here's a pic of the current setup, a vinyl glove – with a hair elastic around the wrist to hold it in place. Because otherwise, with just the glove, paint still finds a way to get in there, as seen in the second picture.

There are few things more aggravating than a camera battery dying long before the memory card is filled. Especially when you left the spare battery on the charger. Still had the iPhone as a backup, and took several hundred photos, at least.

That is all. For now.