TBI SURVIVAL FOR MILD-TO-MODERATE LONG-HAULERS - Lessons From 20 Years of Tripe
Updated: Feb 1
As y’all know, I don’t often do the list thing, and I certainly don't do the short, snappy ten-point list. If this post is too long and overwhelming, bookmark it, come back later, take your own notes. Print it out and highlight. Print it and cut it into pieces, stuff them in a box, and randomly take one out when you feel like. Or heck, print it and line your cat's litter box with it, then go back out to Google and find someone who writes short, handy lists. I don't.
You remember I'm a novel writer, right? Average chapter length for novels is apparently 3,000-4,000 words. Typically they range from 1500 to 5000. I just looked.
Yeah. That's exactly how I write no matter the medium.
And every once in awhile, I get a bee up my butt to regurgitate a list of tips. It usually happens when I get annoyed enough with the frustrating memes, the clueless conversations, the anti-helpful advice, the censoring/deleting/ignoring of my comments on sites for TBI/disability/chronic health stuff, and all those skid-marks on my forehead from people running away the moment I open my gob about this condition that is vastly overlooked, underestimated, misunderstood, and misrepresented.
Misrepresented 1: Not everybody with significant brain damage got it in combat or sports, or else had their skull cracked open. Seriously, this is a condescending, belittling, invalidating myth.
Misrepresented 2: Yes, significant damage can absolutely be done to the brain during things like a low-impact car wreck because the gelatinous, delicate tissue absorbs the force at the end of that whiplash ball-n-chain when it's slammed against the very hard skull. Seriously, there are tons of other ways to acquire a brain injury than the obvious, catastrophic events.
Misrepresented 3: It's called an Invisible or Hidden Injury for a reason. Not everybody with a significant brain injury LOOKS or SOUNDS like they have an impairing disability. Seriously, not all of us are Cousin Eddie.
Misrepresented 4: Seriously, "Mild" TBI Isn't Always Mild.
This post is NOT intended to take the place of assessments and advice from medical staff, mental health professionals, lawyers, disability assistance, or any other professionals trained and licensed for the following topics.
This is just part of my personal survival manual. It might help you brainstorm solutions you might not have thought of, or it might help to know you're not the only one feeling and thinking these things.
Then again, maybe some or even all of my unsolicited advice will be annoying, aggravating, unhelpful, or anti-helpful for who you are and where you’re at in your journey. Only you can know for sure because my brain is not your brain. What works for me might not work for you. So ignore, flip me off, scroll on.
But just in case any of my coping mechanisms can do anybody else some good, let’s dive in:
1) Oh, hi. Welcome to the Underworld. You say your "little" concussion didn't go away like they promised it would? Well, crappioka pudding. In the illustrious words of Henry Roth from 50 First Dates, “Everything is going to be okay.”
2) Except when it’s not okay.
3) And it’s okay that it’s not okay.
4) Naw, you know what? This TBI bullshit fucking SUCKS. That shit is sooooo not okay!
5) And that’s okay, too.
6) I have the ability to go around and around and around and around about that on a broken-record, hamster-wheel-of-doom for...like...ever. Know why? Ummm…Dain Bramage. I haz a broken frontal lobe stop mechanism exacerbating my natural personality. So I either vacillate between extremes like Newton’s balls clickity-clacking backity-forthy on the boss’s desk, or I'm a yin-yang symbol, embodying polar opposites simultaneously.
—Pssst…you might be, too, especially with Dain Bramage. Just go with it. Maybe you've found that trying to maintain an “appropriate” social facade in that nice neutral, professional zone eats up way too many Spoons. Right now you need every one of those suckers you can get. Pick your battles. Choose carefully where you spend your Spoons.
7) Knowing precisely which type(s) of Dain Bramage you haz and how it affects your natural personality and the history of your brain is imperative to understanding your injury, because every TBI is different.
—FYI an MRI or EEG is not guaranteed to tell you what's going on with your brain. A neuropsychological exam is much better for that. I hear there are all sorts of awesome brain scans that various cutting edge people are doing but...I'm not the person to ask about that. I've barely received any sort of treatment for mine.
—Even people with damage to the same areas manifest injuries in vastly different ways because…of course…the brain you started out with was vastly different.
—Plus, we’re talking about microscopic nuance. A half-inch difference of injury placement in the brain is like…”Huh. Am I in Europe? Nope, I’m in Africa. Woooow…”
—You're definitely not in Middle Earth: One ring does not rule them all. The same is true with diagnoses. You don't get to wear somebody else's diagnosis just because you both got hit on the left side of the head.
—And your injury is constantly in motion, especially if you're proactive about your healing
8) So don’t let anybody tell you, “Oh, come on. (Wuss.) I had a concussion to my BLEEP lobe, too, and I didn’t have all these problems you're complaining about.”
—Lucky you. I do.
9) Don’t let anybody tell you, “Oh, come on. (Whiner.) I had an even worse car wreck than yours! I tumbled down five cliffs uphill both ways in the snow without underwear and I’m #AllBetter now. So what’s your problem?”
—Ummmmm…today that’d be you. Byyyyyye.
10) Don’t let anybody tell you, “Buck up and suck it up! (Quitter. Lazy. Pessimist.) There’s no such thing as permanent brain injury.”
—FALSE. Mine is. And there are a lot of people out there whose brain injuries are worse than mine.
11) Don’t let anybody tell you, “Well, you have a permanent brain injury so this is just how it’s going to be for you forever.”
—FALSE. Unless you say so. It’s your friggin’ brain, not theirs. But I promise you:
12) Neuroplasticity is your friend. Do everything you can to rebuild it. Rewire it. Reroute it. Forge new pathways. The brain is a miraculous machine and scarily resilient.
—Except on the days when it’s not.
13) So don’t let impatient or clueless people convince you that, just because you rerouted things that were damaged, you’re #AllBetter, unless you absolutely know in your guts and your neurons that you are.
—If you are, congrats! You fought your way free from the Bog of Eternal Stench! Please send us postcards and pompoms. And more dark chocolate. No nuts in mine, plz.
14) Underworld humor is your friend. Seriously. It’s dark down here. We like our humor like our chocolate. Except in this case, having nuts in your humor is perfectly edible. Lots o’ nuts in mine, plz.
15) Do not be afraid, embarrassed, guilty, or ashamed to expose yourself as a member of Club Dain Bramage. It's a prestigious cult. You probably didn't work very hard to gain your membership, but hey. That's part of its Sith magic.
—Oh, you genuinely answered their question of, “How are you?” either because you can’t not answer literally or because you chose to be honest? That's cool. It’s good for people to understand the reality of living with TBI.
—You had a meltdown in front of people? Well, crap. But it’s also good for people to understand what a neurological meltdown is. (Hint: it’s not you being “emo” or “throwing a tantrum” or doing something you “shouldn’t.” I highly recommend that they look up what a neurological meltdown is. Because your injured brain is now the equivalent of the overtired 4-year-old in the crowded restaurant at 11 o'clock at night. Be gentle and loving to it.)
—You just dropped the F-Bomb twelve times in thirty seconds in the middle of that professional meeting? Well, fuzzballs. Time for more public education.
—Oh. It was in front of a class of five-year-olds? Well, fuck.
16) Learn how to make genuine apologies without beating the snot out of yourself for things you can no longer control.
—Sometimes "Thank you" is better than "I'm sorry."
17) Understand that you have just become an official educator. Nobody in the whole world can fully and completely educate people about the specifics of your brain injury, what you need, and what you can/not do except you.
—NOTE: If you’ve been rendered incapable of expressing it or if you don’t yet understand it yourself, your care team will have to do their best with it.
—If there's nobody around to provide this educational service...eh. It's also not your job to do the emotional lifting for everybody else's ignorance and lack of empathy for the brain injured. So you only need to educate when you are inspired to, or when your injury needs you to. If you can.
—If you can't, they'll have to deal.
18) Cut yourself some slack. Trying to educate people in the middle of being symptomatic is not the best time. It often does more damage than good—especially to you and your relationships. Time-outs are your friend. So are reboot power-purrs.
—Check it: you can go with pre-written cards that explain what’s going on if you verbally can’t. I occasionally wear a humorous sign in big public places like: “SORRY. Having a bad brain day. Unfit for public consumption.” Or “WARNING. Brain malfunctioning today. F-Bomb hazards ahead. Recommend you detour.”
—Approaching it with a sense of humor prevents so many train wrecks and makes people curious rather than uncomfortable or scared, because it shows that you might be approachable about the subject, instead of...you know...that ravening, froth-mouthed, head-chomping Beastie we all know lives inside you and will come roaring out of the cave if someone says, "Boo," at the wrong time.
19) Some people have zero sense of humor about this. It’s hard for them.
20) Some people have zero compassion for this. It’s even harder for them. Avoid when at all possible, and when you can’t…well…hopefully you can find your compassion. And when you can’t do that either? Well, fuzzballs.
21) Some people who usually have compassion...don't today. See, their two-year-old just puked all over the back seat and they didn’t have time to clean it out before rushing into that doctor’s appointment they’ve had to reschedule thrice and the puke got baked into the upholstery and then they learned they have cancer and had to drive home in the reek with a screeching toddler, and you just freaked out on them for getting too close in the fluorescent lights and #TooManyBrandsChoicesColors while they were just trying to get a hotdamn, poopyfucking, mudsucking Klondike bar to console themselves! On those days, it’s hard for you both. You both deserve your comfort-treat of preference.
—When someone's being a super-jerk to me, I try to remember to make up horror stories for them like the one above. It helps me remember that I have no idea what's going on with anybody else, just like they have no clue why I want to Force-Choke them while growling, "Fool! You do not know the powaaaaah of the Dahhhhhk Siiiiiide."
Concentrating on the creation of said horror story also distracts me from Force Choking them with the Klondikes long enough for them to make a clean getaway from my vicinity.
22) "Fuck it" is your friend. Somedays you just have to abandon the overstuffed grocery cart in the middle of the store. The same is true for abruptly tapping out on a gazillion other scenarios in which your brain has been rendered the overtired 4 year old. Somedays it’s far better to just drop everything, #BeAQuitter, and walk out without trying to Make Nice or explain what’s going on, so you can reboot your brain.
Have a good cry, punt and wallop the air, roar, curl up in a ball with your hoodie pulled up in the back of the closet, go for a walk, do your breathing exercises or mantras or whatever works best for you in any given moment.
Later you can explain to your people what just happened so they can better see the warning signs coming down the pipe in advance and help you avoid future meltdowns or the necessity to fully tap out.
—NOTE: Learn to heed warning signs when they’re small!!! That’s when you can still politely, or at least calmly tap out.
—ADDENDUM: Except when you can't. Somedays I get no warning signs or they’re super subtle or my injury makes self-monitoring difficult-to-impossible. Overload does that, too, which is super annoying:
Somedays I'm too overloaded to noticed that I'm overloaded. Un-helpful.
Somedays my symptoms sneakily skip phases for no reason, jumping straight from Code Yellow to Black in 1.58 seconds. BOOM! In more of Henry’s illustrious words from 50 First Dates: “Well, that sucks.”
23) After abandoning your grocery cart, you can always write an apology note to the store or make it in person if you feel moved to. Having service staff and managers who are more educated about the effects of flippin' flickering fluttery fluorescent lights on their neurodivergent customers is not a bad thing. The same is true with any other triggering environment where humans are present.
24) Somedays you just have to hurl the grocery bags into the refrigerator, slam the door, and sleep for four hours before dealing with unpacking them.
25) You might break the eggs. Shrug. You’ll get good at cleaning egg goo.
26) Cleaning egg goo, by the way, SUCKS.
27) YOU DO NOT HAVE TO LIKE ANY OF THIS.
28) Let me repeat that.
28) YOU DO NOT HAVE TO BE FUCKING HAPPY-SKIPPY ABOUT ANY OF THIS. You have the right to be infuriated, outraged, depressed, grieved, despondent, hopeless, enraged, affronted, or any other emotion that you feel about it, and nobody has the right to tell you how to flippity-flappity feel.
29) You do not have to maintain that #AttitudeOfGratitude. 🤢
30) You do not have fucking smile. 🤨
31) You do not have to #BePositive. 🤬
32) You do not have to recite the ShittyAss Prayer--I mean the Serenity Prayer. 💩
33) You do not have to #KeepCalmAndCarryOn. 🤮
34) You are not required to give yourself fifty lashings with a scourge because you are symptomatic. 🖕👿🖕
36) Reciting things you’re grateful for can help create brain chemistry that heals. It also can sometimes help you keep going when you think you need to tap out, because sometimes you do need to keep going. Reciting gratitudes also teaches you a vital neurological skill you’re going to need: hunting down and celebrating every tiny silver lining you can find.
—NOTE: If you have a caregiver, reciting your gratitude to them personally is CRUCIAL. Gifties and dumb cards can help with this, too. My caregivers' burnout is my reality, as well as theirs. My gratitude is my responsibility and my honor as the injured person fortunate enough to even have a caregiver. Many don't.
—Self-serving bonus if you’re really not up for being generous today: expressing gratitude to someone also triggers that wonderful mechanism in your brain that feels good when you stop thinking about yourself so much and do something kind for someone else.
If you have the time and Spoons, making a giftie or dumb card can also help with distraction--another crucial survival skill.
—Self-serving bonus 2: you’re less likely to…um…lose your caregiver(s) if you actually express your appreciation. Gratitude will give you a much needed cush for the days when you’re a flippin’ nightmare. Which you are. (And that’s okay.)
—Self-serving bonus 3: appreciative Spoonies are more likely to attract more than one caregiver, so all your Nightmare Goodness can be spread around, thus reducing burnout in any single person. Plus, each caregiver has their special skillz and their unique areas of life-jerry-rigging expertise. Creative mastermind groups are your friends.
37) Architecturally bolstering your face up into a (fake) smiling position for long enough can sometimes trick your brain and your body into a state of feeling better—and isn’t that what you want? To finally feel better?
—Also, envisioning yourself smiling at your wounded, battered brain (or any other hurt part of yourself) and sending it genuine love can help it heal. It’s kinda weird how that works. But it does. At the very least, there will be ONE friggin' person in your life who is compassionate, patient, and loving to you exactly as you are TODAY.
—Bonus: you're the most important person to do that.
38) Writing/saying/listening to positive affirmations can rewire the brain and trigger the sensations of feeling better. They also help with that neuroplasticity thing.
39) The theory of the Serenity Prayer is one of your best friends. If you have as much trouble with it because of semantics as I do, you can steal my adjustment: “Inhale…exhaaaaaaaaaaaaale…May I have the courage to change the things I can, the patience to accept the things I can’t, and the wisdom to know the difference. (Which doesn’t mean I have to like it.)
—Learning mantras, meditations, chants, and breathing techniques is another way to calm down your nervous system and focus your mind on feeling good. These things also repair trauma responses, which do NOT do your TBI any favors. They just muck up your healing.
NOTE: take care with meditation, especially if you have old trauma in addition to your TBI. You can open up cans of worms that add an extra load to your healing. Breathing exercises can do the same thing, so if you're a vat of cPTSD like I am, I also recommend seeking out professional trauma therapy that is separate from what you're doing for the incident that gave you the concussion. The two are very different animals and often need to be treated differently.
—4-Square breathing is a good technique. (Inhale 4, hold 4, exhale 4, hold 4, rinse-repeat.) Apparently the hold mechanism disrupts the amygdala--you know, the brain Beastie responsible for an overactive alarm system. This explains why I used to HAAAATE this one, and why it is so good for me.
—Exhaling for longer than your inhalation also triggers your body's digest-rest-repair system, in contrast to your fight-flight-freeze system.
—When I'm having trouble with meditation, this is my go to because of the guided breathing focus. Doing one of the four meditations in this series EVERY morning before I allowed myself to get out of bed for three months straight is what finally got me over the meditation hump.
—For further serenity and calm, avail yourself of things like noise-cancelling headphones, hoodies and hats that block out peripheral motion, sunglasses that dull lights, etc.
—Check out coping mechanisms used by the Autistic Community. You now have a lot in common with them, if you weren’t already on the spectrum before your injury.
AND NO: TBI CAN NOT "GIVE YOU AUTISM." But just like trauma, they can manifest in similar ways.
40) Learning bodily movement sequences, stances, and repetitive actions to calm down your overloaded nervous system, your overburdened heart, and your under-funded Spoon collection is a vital survival skill.
—Movement can unlock stuck trauma patterns, and it's just generally good for health, including brain health. Don't believe me? Go geek out on a book called The Body Keeps the Score.
—Learning movement sequences is also great for neuroplasticity and for brain cross-hemisphere stimulation.
Things like tai chi, chi gong, yoga, and ecstatic dance incorporate so many more healing techniques than mere movement.
41) Self-care is NOT "being a wuss/weak/whiner/pussy" or any other disparaging label. People will try to guilt and shame you into believing that crap.
—They are wrong. Often it's because they're not getting what they want out of you. Too bad. Sometimes it's because they're crazy-makers or outright abusive. (See "Pirates" below.)
—Naps, breaks, and time-outs are your bestest buddies. If you have a brain injury, you may have to insist on special work hours, more frequent breaks, and time to do your self-care regimen.
—Yes, unfortunately it might mean that you have to change jobs, schools, friends, hobbies. "Well, that sucks."
—For my people-pleasers, perfectionists, and suck-it-uppers: Your self-care benefits everyone around you because they get a much more functional--and pleasant--you. Bonus: you get to participate in life more.
—You have the right to utilize coping techniques and devices with special dispensation for your injury/disability.
42) DISABILITY RIGHTS IS ALSO YOUR BESTEST BUDDY! Did you know that there is an entire pack of rabid lawyers whose sole purpose in life is to make sure that the disabled have their rights upheld? WHEN the government agencies and other entities mess with you, working with Disability Rights can change your life. For me, they have been the best thing ever. Don’t ever hesitate to ask for their assistance, and once you have it, don’t ever hesitate to warn an agency that you’ll be giving Disability Rights a call if your rights continue to be neglected or infringed upon.
—This is mine. They have helped me navigate the endless nightmare of dealing with government agencies. They are sometimes the only resource that allows me to keep going.
43) Never fear to be the squeaky wheel in order to get the care you need. EVER. People and agencies who thrive on your timidness, your "I don't wanna make trouble or put anybody out of their way," and your sheer overwhelm--it's to their benefit when you stop squeaking. Government agencies are masterfully designed as Herculean labyrinths for the sole purpose of making you quit. If you're disabled and need their help, DON'T GIVE UP.
—Unless you have other options. Then by all means, run screaming.
—NOTE: This labyrinth of red tape exists because these agencies are too overloaded. Our system is broken. Covid made it a thousand times worse. So at any time that you're able to: be kind, polite--always insistent--graceful, and compassionate to your government, insurance adjustor, etc. agents. These people didn't get into this field to make themselves rich--Hahahahahah! Good one. They probably did want to help originally.
—They may seem like the enemy sometimes, but they're not. They are swimming upstream against the Amazon River, just like you are.
—They deal with A LOOOOT of bullshit, lying, manipulation, and abusive treatment. Sometimes your patience and kindness to this person on the other end of the line or other side of the counter can make all the difference in getting an agency to help you.
—AND: only let your much needed assistance be pried out of your cold, dead jaws until you can fend for yourself again.
44) Never feel like an asshole for having the tenacity of a weed in defense of yourself and your injury/disability.
45) Never fear getting a second opinion.
46) If you've exhausted your patience and kindness, your educational manner, and your firm insistence, never fear firing people who are not listening to you, especially if they are causing you more distress than you’re already experiencing. This goes triple for your medical team. And employers. Friends. Family. Caregivers. Significant others, especially if you live with them. If they don't get it and are causing you more issues than they are helping you heal, distance is your friend no matter who they are. Because someone who thwarts your healing is not a friend. That's not giving care. That's not Family--it's merely coincidental blood relation.
47) Never feel like an asshole for insisting that your environment be conducive to your health needs when at all possible.
48) The unfortunate reality is that your health NEEDS trump someone else’s PREFERENCES. I’m not sorry for that. It sucks and I don’t like it for y’all who have to deal with me. But if you choose to enter my home, hire me, study with me, or interact on a personal level with me, then you MUST adhere to my health requirements or you don’t get to deal with me except in passing or with a great deal of distance.
—Those of you with children have a different issue. Because children's NEEDS often trump those of parents. I'm not the person to talk to about that.
—Those of you who are caregivers yourself...same deal. You may have to tap out on that or get more help, and if you can't--again, I'm not the person to ask.
—But I will remind you all that there's a reason why they say to put your own oxygen mask on first. If you're suffocating, you'll only take down those who are reliant upon you if you don't keep this in mind. (Same is true when choosing your caregivers--make sure they have their oxygen masks on.)
—"Yeah? Well, if I don't take what I can get, I'll have to do this all alone." YUP. Sucky Truth #294. And only you can know when being alone is better for you than being with toxic. It completely depends upon the care needed and supplied, upon the type of toxic, and on your type of tolerance to it. Every situation is as unique as every brain injury.
—If you've lost the ability to weigh pros and cons in seeking out a caregiver, get help for this. Email a brain injury association. Get on social media groups under a secret identity and speak out. Ask for help. It's important.
49) Sucky Truth #13: Become accustomed to mass abandonment of your sinking ship.
—The fair-weather rats will flee first. You don’t want them there. They carry plagues.
—Next will go those who are not strong swimmers. You don’t want them to stay either, because you’ll drown them and you do not possess the Spoons to rescue them.
—Some of your strong swimmers will also go. Let them. If they’re not passionate about being there for you, as you are TODAY, you don’t want them taking up space and your precious, limited resources that could be given to Your Crew.
—Those who remain are probably Your Crew. Especially if they stick it out after the first 6-9 weeks when the world expects that "you should be #AllBetter by now.” There’s something about that time period. That’s about how long a lot of humans can tolerate and help out someone’s grief or symptoms with compassion, unless they have powerful motivating factors like a deep attachment. In the first few years, you might have a high turnover rate. That’s natural.
—Be extra wary of Klingon Barnacles and Pirates right now. YOU ARE VULNERABLE. Your resources are down, your defenses are leaky, your attention is focused on saving your ass, you have lost many mechanisms that drive your radar, your world is upended, and some of these individuals have extraordinary masks. Ask Your Crew to keep an eye out for this.
—Longstanding Crew might abandon ship a few years in, even a decade in. They get burnt out, man, and sometimes they also need to administer their own self-care. Sometimes their circumstances change and they lose their oxygen masks. Wish them well and mourn.
—Longstanding Crew might also abandon ship if you are no longer the person they originally bonded with—either because you are now injured or because you healed from the injury that bonded you. This is a fair desire for them to have. It’ll suck. Or it might be a relief. Or both. If you’re no longer compatible, you’ll both be better off with distance between you. Wish them well and mourn.
—The same is true in reverse--if your longtime Crew Matey has changed dramatically, you might need to bump them from the crew list at the next port. If they've become toxic, you might need to make them walk the plank.
—Seriously, look out for Pirates. YOU ARE VULNERABLE. White Knights, White Nurses, sociopaths, manipulators, users, thieves, abusers, emotional vampires…the injured, ill, miserable, and disabled are prime prey for these types, and with TBI you no longer have all the mental resources you once had to sniff them out, much less defend from them, so beware even letting them step on the gangplank.
—Do your research. Learn the warning signs about all those toxic types, even if you think you don't have any in your life. Oh, you're breathing? Yeah, you probably do. Hopefully you're good at keeping them at bay. If not, this is a badass skill to put at the top of your priority list.
—When you find a Pirate infiltrator: Do not parley. Do not hesitate. Make them WALK THE PLANK! YARRRRR!
50) YOU DO NOT HAVE TO LIKE ALL OF THIS, but it's important that we, the injured, do everything we can to not take it out on the people around us whenever we can prevent it. If you accidentally do take it out on someone, just apologize and try to never do it again. Your symptoms might make that impossible, and then people need to decide for themselves if they're able to separate you from your symptoms or not. It'll depend on who you are, which symptoms you have, who they are, and what else is going on in their life at any given moment.
51) If you have memory problems like I do, and you have an entire conversation where your caregiver expresses boundaries and needs, but then everything you talked about and agreed upon gets wiped from your memory overnight, so you accidentally transgress them…then talk about it and make the same apologies and the same agreements again…and again…and one more time before you finally remember it…
52) Fuzzballs. "Well, that sucks." It’s one of the many things that destroyed my first marriage. I’ve had to learn how to let myself feel awful for him while simultaneously feeling just as awful for me that I was incapable of doing what I yearned and needed to do: to remember what he’d said and what we’d agreed upon so I could stop crossing his boundaries.
I just couldn’t remember.
And that’s okay.
It has to be.
It’s also not fucking okay, and so it’s good that we’re no longer together. Because the impact I have upon other people matters to me.
AND this world is not set up for the neurodivergent, the disabled, the injured, the ill, the grieving, the traumatized—
Yeah, as we found out in this pandemic (and seem to be forgetting in the efforts of getting #BackToNormal), this world isn’t set up for humans. It’s set up for cogs in The Machine, and we cogs who either had some of our splines sheered off, or those of us who were born starfish shaped, tetrahedron shaped, coily shaped, or unicorns…well, it’s especially not built for us.
I came across a fascinating TED Talk today called “Why everything you know about autism is wrong.” She had a saying that I will be using like one of my mantras, because whether or not I would have been diagnosed on the spectrum under today's understanding of Autism, once I acquired Dain Bramage I absolutely function this way now.
Either way, this saying also works for TBI or other impairments or wheelchairs or chronic conditions or…or…or anybody who has been devalued by society in this way.
“Maybe you can’t tell just by looking at me, but I’m disabled, too. I’m not disabled by my autism though. I’m disabled by my environment.”
~Jac den Houting
It’s good that the subject of disability is coming up more and more with every year. People are profoundly hinky when you start to talk about the reality of brain injury. They just really, really do not wanna know this stuff. I think it's too scary to comprehend how easily it could happen to them or someone they love. Or it's too scary to admit that this is the problem they're suffering with.
Even the brain injury community—for those of us who don’t have “simple” concussions that heal and disappear, or who don’t have a severe injury requiring massive care...even our own support community often doesn't like hearing the uncensored truth from those of us with “mild” or “moderate” symptoms that are classified as "permanent," unless we’re the kind who are their poster child Overcomers.
In other words, unless we've gotten our old lives back or we can obtain the ultimate marker of a Hollywood Overcomer's ending: The Almighty New Job.
We vocal, honest long-haulers who haven't yet figured that piece out tend to be ignored, censored, and squished down the cracks, out of sight where our obnoxious, angry and despairing voices can't be heard to counteract the Winners Chants. I've been through two different Voc. Rehab agencies and they agree, I'm not a viable employment option and I'm not a good self-employment small business risk, so WTF now?
I have no clue. Neither does anybody else.
On brain injury social media, I tend to get crickets, awkward smiles, or dismissive head-pats as people sprint away to answer questions about cases that have easier solutions.
Heck, even a prominent brain injury association never answered my emails or my messages left through their site at my greatest times of desperation. And let me assure you, this is one of the major associations Of My Country. Ahem. They obviously received the messages, because they never fail to include me on their mailing list when it comes time to ask me—THE DISABLED TBI SURVIVOR FINANCIALLY DROWNING HER PARENTS—to send them money.
That always feels great.
Personally, I think we have far greater educational value to the gazillion Long Haulers out here drowning and squished down the cracks, than any amount of raised triumphant fists or smiling group selfies. Because I don’t know about y’all, but reading story after story of #Overcoming and #Winning when my story is no longer deemed inspirational because I lost my Overcomer's Income after three subsequent brain traumas?
Yeahhhh…I’m happy for the protagonists of those extraordinary tales. I take note of them on my tally sheet of Possibilities. But Winners, the Newly Injured, and Severe Cases aren't the only brain damaged people out here.
I cannot relate to them, so their stories don't motivate me. They are not the kind I repeat to myself and wrap around my shoulders like a security-woobie in the middle of my dark nights.
People living permanently in the craptastic Underworld, yet still finding bliss down here--they do.
People who are capable of carrying the dichotomy of misery and joy simultaneously--they do.
People who speak honestly about the extreme lows and the extreme highs, as well as the day to day rhythms of living with a chronic condition--they do.
I'm tired of the Hollywood Triumphant Endings. They never tell you about what happened after The Triumphant Race/Fight/Game was won. We who simply persevere every day after day after year after decade (except on the days when we don't) but we never hit any of those Big Triumphal Markers?
Sheeeeeit...we aren't deemed worthy of having stories told about us, and they certainly don't want us telling our own stories. Fakebook censored me all the time, and Medium did it, too. Guaranteed Google makes it hard for anybody to find this blog, especially considering the number of banned words I sling. At least Instagram asked me if I needed mental health help before censoring some of my Dain Bramage posts.
The truth is, we win every day. Unfortunately, we also lose every day, so apparently that's not good enough. Personally, I think somebody who loses constantly but never stops trying has a story I'd like to hear.
This planet is a dangerous place. It's always trying to kill us. Existence in this Universe is based off the fundamental destruction, ripping apart, and reorganization of things so that something else can live. It's the reality that all of us in a body face every day. This place wasn't made for eternal bliss and comfort. That's why some people depend on tales of Heaven and Paradise they'll get to enjoy #Someday.
Personally, I depend on vastly different types of stories, because I'd rather enjoy my life today, even in the seasons when I'm stuck down in the Underworld. You never know. I might croak before I ever get to experience paradisal springtime again so I gaze at the asphodels, I dance with ghosts and daimons, and I enjoy the sweet-sticky mess of pomegranate juice running down my chin.
They say to write what you want to read, so there ya go.
There's just one tiny list of survival mechanisms and mindsets that I’ve developed over the past twenty years of living with permanent Mild--and now Moderate--Traumatic Brain Injury, compounded by nearly fifty years of living with cPTSD, and with being a lifelong HSP Multipotentialite neurodivergent alien slathered on top.
I (usually) don't see my boulders as a Sisyphean punishment,
but I do identify with this Tartarean rhythm.
I’m sure there will be more of these lists to come. Some of the points will get their own posts (or five). But these are a few things that are on my mind today.
My dad always says these to me:
“Stay the Course.”
“Got Your Back.”
“Strength & Honor.”
We also tend to say “Not. Yet.” (Wut? We love our Gladiator movies.)
Which is a topic coming right up in the near future! Yes. I’m talking about my Gladiator obsession. You don't even know. But if you stick around, you soon will.
For my stimulation-seekers:
(Or if you prefer hard-hitting video imagery over lightning-strike lyrics, here's the music video.)
For my stimulation-avoiders:
CHOOSE YOUR OWN ADVENTURE
--UP NEXT: I get sidetracked by FOLLOWING FOXES - AND MY BLISS
--OR: if you're here for All the Dain Bramage, you can find that HERE.
MORE TBI RESOURCES THAT HAVE HELPED ME
5) TBI and Rage