So this one's a little late. I actually had it written a few weeks ago, before the end of March, but didn't have any images and thought I might doodle a few. Well, that hasn't happened, and my hand is twitching to doodle things not-relevant to this. So here it is as is:
Among the things that getting hit on the head gave me is an appreciation for brain skills most take for granted, and just learning what qualifies as a skill.
Another one of the really important and helpful and useful things I learned from my speech therapist is this:
Aside from being a speech therapist, she was also a professor at a college with a concentrated communication disorders department. When we'd reached the limits of what she could do and how much the insurance company would cover, she invited me to the school to take some tests – to see if I might qualify for some studies. If I didn't qualify, I could at least be a subject for grad students to practice on.
While I did not qualify for any of the studies, the testing did help reveal a few things.
So, as I mentioned above, filtering out background sound is a skill. It was a skill I used to rock, without ever realizing it. And for me, it's one of the things that got knocked around pretty damned bad with that head injury.
When I explain this in person, it goes a little like this:
There were actual percentages involved, but I forgot the numbers and would need to dig up the paperwork. But the visual makes the point well enough. (Yeah, that's some of the stuff I was going to doodle).
My ears were ok, and the language center of my brain was ok. But the signal in between the two was having a particularly rough ride.
When they delivered this news, they made a point to mention that the signal from the left ear travels to the right side of the brain before it gets delivered to the language center.
At this point, my face probably went all scrunchy with thought, which then came out as, "I got hit on the right side of the brain…"
With something like a "mild" TBI and post-concussion syndrome and most of the 'proof' of various issues being a patient's say-so and nothing more, I cannot tell you how helpful it was to have some measurable results in hand that said it wasn't the metaphorical 'just all in my head.". A problem did exist within my head. For reals.
What did that really mean? Well, let's talk a bit about my pre-accident brain and way of life:
I liked noise. I liked having music on, and different kinds of playlists for different kinds of tasks.
My painting session playlists would often have chunks of audiobook or podcasts, broken up by a few songs every 50-60 minutes to help remind me to take a break.
The sound helped me concentrate. Without it, I would think about other stuff, think too hard about the painting, overwork details, get bored, and be prone to all-too-frequent snacking.
Soundtracks and mostly wordless music made up my writing playlists. It helped me focus on what I was doing, and get in "the mood" for the story. I'd often use more dramatic soundtracks for more dramatic scenes. Some of my favorites include Heroes, Constantine, Battlestar Galactica, HALO, Tron: Legacy, Blade Runner, Danny Elfman's Batman Score, Akira, Titanic… you get the picture, right?
Beyond music, the sounds of activity in the background also helped. I enjoyed writing in coffee shops, and even downloaded an app – Coffitivity – for use while writing at home. I had an approximate optimal volume setting for the music to balance against the Coffitivity sounds.
A good punk rock playlist was a great way to motivate me and keep my mind from thinking about how hard it would rather be doing something else.
Music while driving – at moderate volumes – helped me concentrate on the road better. Without it, my mind was prone to getting bored and wanting to drift to other things, and impatience for getting to wherever I was going…. VROOOM VROOOM.
After the accident, all that went out the window.
Just listening to music by itself was hard, my favorite music in particular. I remember having a really cruddy super depressing day and swearing I was going to listen to the entire Rancid album "…and Out Come the Wolves" (favorite song off that = Ruby Soho - and the video even features a kitty!) no matter what, even if it had to be really quiet, just to try to feel normal or something. TRY to alleviate the depression. And I did, but … it hurt to listen to it.
I feel like I should say something about my "migraines" during this time. I call them migraines because they came with severe sensitivities primarily to light & sound, but also often scent.
But they were NOT anything like the 2-3 migraines I'd had previously, many years before the accident and a distant memory. I would take those long lost migraines over the mTBI / PCS brain overloads without hesitation. It wasn't just that they hurt, a lot. Holy cats, did they hurt like I still don't quite have words for. It was that my brain felt like a computer logic board short-circuiting in the rain, relentlessly assaulted by signals that it couldn't make sense of and just wouldn't let up. Sharp and stabby bits and pieces of information.
Sounds shitty, right? Well, imagine when your favorite music has that effect, and it has nothing to do with the volume.
I still listened to it, sometimes, and even went to a few concerts (with heavy-duty near pro-grade earplugs) because damnit if I didn't have to have some reminders of why it was worth it to try to hang in there to see if things would ever get better.
It's been a few years, and some of that has come back. Not all of it, but a lot of it, and some of it I haven't yet put to the test. Around the time I thought I might try writing in a coffee shop again, all the coffee shops, restaurants, and effectively everything closed because the COVID-19 virus was traveling too far & wide. It's occurred to me to give the Coffitivity app a try again, but I would need to spend some thought on the set-up, as I've shuffled computers and speakers around and don't have a dedicated writing spot in my current residence.
But I do have background music on a lot more often. I had to build that tolerance slowly, with some seriously simple stuff. A series of ambient meditative sounds (some from Moby) were all I could handle for a while if I expected to be doing anything other than absolutely nothing, and with my eyes closed. I've worked my way up to and through things like Brian Eno Atmospherics, Siguros & the like. Now I'm able to listen to my 9-member ska-core favorite-of-favorites Mighty Mighty Bosstones most of the time. My writing session soundtracks are less dramatic but getting there, and I often have to choose smoother, less dramatic soundtracks & instrumentals. Sometimes I just can't quite do an audiobook or podcast while painting a trickier part of a painting, not without something suffering for it, be it my comprehension or the painting. So I pause for a bit, and sometimes even remember to un-pause when I've resolved the trickier bits and can get back into 'the zone."
So, slowly working my way back to the noise-ful life I love.
I keep starting this post and stopping. I can't seem to figure out how to get it going. Even though I've improved a lot, one significant observable lasting change is my focus sucks really bad these days. One of my newer meds is ADHD oriented (non-stimulant), and that has helped. But an attempt to increase the dosage to see if I could get more benefit resulted in an uncool level of side effects. So for now, I'm working with what I got. I'm starting to lean towards finding a new doc for this sort of stuff and starting over, once COVID-19 is more under control.
So, in the interest of posting SOMEthing, here's a glimpse at just a few of the tools involved in my vision therapy. I started it maybe 6-9 months after the accident. My neurologist referred me earlier than that, but it wasn't covered by insurance, so my friends had to raise the funds to get going.
That scattering includes a plastic plate with marble, 2 small grids with letters and different colors, red/blue lens glasses, a long string with 3 different color beads on it, a ball, prisms on sticks, small pieces of paper in different shapes (squares, triangles, and diamonds), an eyepatch.
All sorts of fun things to get my eyes aligned right & working together muscle-wise, working the way I needed, plus get my brain better at working with the signals received through my eyes.
This is just the stuff that fit in a pencil-box type plastic container. There's also a folder full of many many many more things, and there was stuff all over the wall, letters and numbers on sheets of paper and scattered post-its. Plus there was additional work for things like balance & periphery that doesn't fit in either a box or a folder.
And it helped, a lot. It was work, and it was really hard work sometimes. More than once they'd start me on a specific exercise in a session and my brain would instantly flip the f*ck out and start hurting.
Brains are weird, and how they work with our eyes is super super weird.
Aside from the alignment / muscle issues, and the signal issues, I also developed astigmatism in each eye that haven't completely gone away and have changed a bit, which has made updates to my prescription an extra pain in the ass.
That's all I got for now!
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.
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.
So, you've got your brain (left). And your brain has resources (right). She just drew a single circle for the brain resources here, but I'm trying to make this a little fun. Plus, artist. Expectations.
When you do things, particularly multi-tasking, it takes up some of those resources.
In dealing with mTBI, your brain has fewer resources… AND tasks take up MORE resources than they did previously. Like a car with an 80% smaller gas tank now getting 5 miles to the gallon instead of 40. Don't want to do a cross-country road trip in that! So, trying to act like normal is a double or triple whammy.
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.
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.
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.
It's just fucking impossible in a car running that badly. You push that car with the oil that low, and you're going to blow the engine. It's going to just plain stop when there's no more gas. There's no telling how much sleep it needs to refuel, or how long it takes to cool the car down and actually rest after you've turned it off.
These days I think I get about 25-30mpg, and can get up to 55 mph on a good day, and keep it going for 6 hours. I think it's about 2/3 of those "cross country drive" requirements. That's more or less my current "A-game." So loads of improvement, but still a ways away from normal.
If you've ever thought of telling someone to "just push through it," whether their obstacle is TBI, depression, anxiety, chronic illness, something else, or some combination of two or more, think about that car, and the repercussions if you push that too far. Do you know what it feels like to be stranded on the highway with a blown engine? I do, both as a driver and as a brain like that car, and I wouldn't wish either on my worst enemy.
author / artist rambles on about painting, writing, cats, punk rock, vampires, ska-core, mTBI, comics, and life in general.