TBI and BM

I am usually pretty good at faking at being high functioning. Today is not one of those days: earlier I was yelling obscenities at the gas pump and was on the verge of driving away before getting my gas pumped, because the glare on the screen and the screaming advertisements were all TOO MUCH. I'm pretty lucky. I have a "mild" TBI, and I have a lot of resources. I have years of therapy and addiction recovery under my belt, I have friends who offer support (emotionally, mentally, physically), I have a wife who is super supportive/patient/willing to help/able to see when I'm freaking the fuck out and need a life line, and financially, although we have to be careful we have enough back up that when I need a work-timeout I can take it.

May of 2015 (I think...time lines are all fucked up since then) I smashed my head. No exciting story, I'm a civilian who was just being "graceful" A year and a few weeks previous I had smashed my head, again, no exciting story. Literally the week before this last one I had been saying how I was starting to feel "normal" again. I knew this one was different that the rest(seriously, I smash my head on average monthly hard enough to leave a lump, sometimes to leave me dazed for days/weeks); I had unrelenting nausea and headaches, confusion, trouble with words, what I refer to as "visual confusion", memory issues, and all kinds of shit I can't remember. I'm notorious for not going to the doctor, but by mid-week I told my wife it was time to haul my ass to the urgent care. Great experience: I got a CT scan, and no other physical examination or testing, and a stack of papers that said "you don't have an active brain bleed" and "if you have headache, nausea, or confusion to go immediately to the ER"...which was exactly what I had, and exactly what I had done. It was a doctor friend that confirmed, "yes, that was a concussion" since the UC staff  couldn't even be bothered with that.

So, I went on for months waiting for things to get better. And things some did a little. The headaches eventually went from daily, to almost daily, and as they improved the nausea improved-these days it a few times a week usually, and not all of them debilitating. The cognitive stuff was another story though. Whether it got worse, or I just noticed things more acutely/clearly once the fog lifted I don't know but it got worse before it got better. The "visual confusion" has slightly improved I think just because I've learned to cope with it, rather than IT is better-what I mean by visual confusion is things like I backed my wife's car into my own because I couldn't "see" my car because I was looking for hers, or it I'm looking for a pen and I think it's blue I can't see it right in front of me if it actually happens to be black. Up until about a year ago I couldn't remember more than 3 things at once, now if I'm in a controlled environment my short term memory is pretty good. And I still struggle, I mean I was going to bring the laundry basket down with me just now for my 2:30am edit...but I just remembered. My long-term memory had a lot of holes in it; I couldn't remember things my wife and I had done together, and argued with her about the fact until she gave me enough cues that the memory that seemingly didn't exist finally popped back into the file cabinet. My long-term memory recall has improved some, and I've learned that it just takes a lot of cues to pull up the information, and I've learned to coach people on this. My dizziness has improved greatly...until I ride a plane, or get sick, or some fun stuff, but I can recover in days or weeks, and I've gotten more tools to deal with this one through PT.

Some things aren't so great, probably most of all the difficultly modulating stress and my reactions to it (See paragraph 1). Low Stress Tolerance-limited stressors=major flip outs. In addition to the flip-outs my mood swings are not so pleasant...anxiety, apathy, depression. Full-discloure: I've suffered from depression and anxiety since I was a kid, but the levels of major depression I've been hitting since the TBI are rough, especially combined with the apathy. Before I could always get out of bed and manage my Lists for the day, but when the apathy or hard depression hits, it's all I can do to get the have-to-does done (work, feed the dogs)...and for the first time in my adult life there are days when brushing my teeth is just "too much." Let that sink it: Brushing My Teeth Is TOO MUCH. Although memory has improved, especially if I'm in a quiet environment, my focus is still crap (I'm luck if I can ready 3 books a year, and even listening to audiobooks is challenging). Headaches are way better, but they are still easily triggered by stress; reading; concentration; over-stimulation;  fluorescent lights; lack of sleep; completely random shit. While I was working full time (up until a few months ago) I had headaches every Monday; like lay me out flat with a head over my pillow by evening type headaches. I think the headaches were a combo of fluorescent light overload, and having to re-acclimate each week to the Brain Mana (see below) shortage. The other major not-so-great is that I can't tune out stuff...I hear every conversation, I see every flash of movement; my filtration system is completely busted so I get overwhelmed in loud, bright, or busy environments.

I met with a fellow "mild" TBI sufferer yesterday and we discussed our symptoms, many the same. We talked a lot about the over-stimulation, and exhaustion that comes with it, and she had a great way of describing it. I've forgotten the term she used but I immediately came up with my own, "Brain-Points" or "Brain-Mana" (#MagicTheGathering). So the premise behind Brain Mana (let's call it "BM" cuz I'm a child) is that there are different activities and events that require more brain energy (Mana) than others, and after a TBI you have very limited BM (Think Richard Simmons and the Deal a Meal diet plan..we're on a VERY restrictive diet here!)

On a good day (well rested, low stress, no wake-up-headache) I might have 15-20 Brain Mana. However throw a few wrenches in the works, hell drop the whole toolbox cuz once things go to shit its a like getting caught in an avalanche, then there's a lot less BM to help me navigate the day. If I have to drive somewhere then I'm dealing with sensory overload and require high attention/focus=5 points of Mana, if traffic sucks, make it 8 BM. If I go to grocery store which means lots of sensory input/overwhelm, and fluorescent light=4 BM. Now if in the previous example this were a good day I've just used a major allotment of my BM, and I still have to cook, work (and since I'm in health care I have to fully present for my patients, fill out medical records promptly and correctly=20 BM right there), do some blogging, be present for my wife, oh, and I was hoping to read that book that's been on my shelf for the last 3 months collecting dust. Throw in a physical, mental, or emotional stressor and my world goes to shit in a Napalm extravaganza, and I'm starting the day with a fraction of the BM...this can be things like our dog dying last weekend, breaking my foot in September, getting the flu...these thing lead to magical moments like yelling at the gas pump! The more stressors, the more navigating basic Activities of Daily Living become completely overwhelming and insurmountable-much like Lucy in the chocolate factory.

Traumatic Brain Injuries aren't just a "little headache" for a few days. Even mild TBIs can be permanently life altering. Sadly, we have a long way to go in brain care, and diagnoses...and understanding. Even being able to write a few paragraphs, or even sentences takes hours because I can't maintain my focus, or because what I thought I typed is actually "word salad."  Again, I'm lucky because I do have a lot of resources, and I've been able to implement a lot of coping strategies in spite of the overwhelming lack of support from the medical professionals I've seen. 

If you or someone you love might be having some TBI issues, here are a few things that I have found helpful:
1. If I'm going to be around bright light or fluorescent light wear UV blocking glasses (yellow safety glasses work for me, or if you can have the financial resources visit a Irlen Institute test center  https://irlen.com/find-an-irlen-test-center/
2. Earplugs for noisy places (Keep them in your pocket)...bar, grocery store, restaurant, party, etc.
3. Be cautious with caffeine, especially if the injury has increased/caused anxiety.
4. Have lots of quiet time...plan lots of quiet time. It is NECESSARY, especially after outings/work/concentration requirements.
5. Leave overstimulating situations...have a buddy who can help you exit or be an external monitor to say, "you're looking a little twitchy, it's time to go home!"
6. Challenge the brain/create new pathways: Soduko, learn a new language or instrument, take classes, draw, sculpt, new hobbies!
7. Eat regular meals, get lots of protein and hydrate.
8. See a PT trained in Vestibular Rehab to deal with dizziness/vertigo. 
9. Ask for help.
10. Be upfront about TBI issues when it is safe to do so. Shame is stupid.

The (sorta)Benediction of Self Forgiveness

For the last 2 months I've been re-visiting an old trauma (and a few of its little trauma-tendrils), and and on good days, processing the traumas. Each layer of recognizing, naming, and processing comes with a tug of war of: On one hand relief (Maybe, I'm still muddling through exactly what it is) that i can stop blaming myself, and on the other hand diving deeper into blaming myself because blame is sometimes easier to accept than is admitting how powerless I was. A big part of the healing process has been surrender...Surrendering to the fact that I have been "guilty" of being powerless, and definitely of feeling powerless. Surrendering to releasing self-blame (because, again, I can keep some sense of power when I blame myself). And surrendering to admitting how deeply some of these things have affected me.

As I was writing this evening (for my own reference, nothing for publishing) I stumbled onto a completely different trail: self-forgiveness. It wasn't on my radar, but it was where my words took me. Personally, I'm a firm believer that forgiveness for those who have hurt us isn't a necessary piece of healing; some people may find it is a part of their healing journey, but it is not a universal requirement for healing (I say this both as a person on a healing journey, and as a licensed professional). With that being said, I will absolutely die on the hill that self-forgiveness as a necessary piece of healing the wounds dealt us by others.

As the self-forgiveness gad fly was buzzing around in my head I thought of the post by Nadia Bolz-Weber I'd read a few days ago; specifically her Beatitude Benediction (https://nadiabolzweber.substack.com/p/blessed-are-the-agnostics?fbclid=IwAR39cswCagS9OEfVdPkYrYdZEuIISkTlx9kcAxwxVw4TiDS76mrb732Zft4). Quick disclaimer: I'm not a Christian, quite the contrary I'm a big ol inclusive Heathen, nor am I endorsing her, but I do dig a lot of things Nadia has had to say. Anyway, even I as a non-Christian took some solace from her Benediction. So I tried to work out a benediction or sorts around forgiveness that would be useful to, and to others who might also struggle with self-forgiveness, or perhaps haven't even thought of such a thing as part of their healing.  So here is my own "(sorta) Benediction" so without further ado, here is Cowgirl71's Self-Forgiveness Benediction (I am a card-carrying Clergy, so soak in the holiness of this shit, my brethren. Read it aloud, and see where your own voice wavers, or what "benedictions" not listed find it to your heart; and of course feel free to share what I have missed).


Self Forgiveness Benediction

I forgive myself for being powerless.
I forgive myself for thinking I was powerless when I was not.

I forgive myself for giving up.
I forgive myself for not having enough resources.

I forgive myself for losing my voice.
I forgive myself for freezing.

I forgive myself for not healing sooner/quicker/better.
I forgive myself for back slides in my healing journey.

I forgive myself for poor decisions.
I forgive myself for putting myself in harms way because I no longer valued myself.

I forgive myself  for the times I've failed
I forgive myself for thinking I was a failure.

I forgive myself for not trusting.
I forgive myself for trusting the wrong people.

I forgive myself for being paralyzed by fear and trauma.
I forgive myself for being traumatized by things that would not traumatize others.

I forgive myself  for having PTSD.
I forgive  myself for the days I am crippled by depression.

I forgive myself for thinking it wasn't "bad enough."
I forgive myself for blaming myself.

I forgive myself for my mistakes.
I forgive myself for the blind spots. 

I forgive myself for thinking it was my fault.
I forgive myself for taking on the blaming myself.

I forgive myself for how hard I've been on myself.
I forgive myself for being stuck. 

I forgive myself for hating myself.
I forgive myself for the burning coals of rage I stoke within me.

And finally, I forgive myself for not forgiving myself sooner.


May we all blessed on our healing journeys.

Although we may feel alone we are not. There are those who have come before us, who walk beside us; whether we see them or not, and those who will follow behind us. We will stumble, we will fall, and we will pick ourselves up and continue clearing the path for others.

Generational Trauma, Chapter 1: Mama Bear

About a year ago we were contacted by Pam via Ancestry.com about my paternal grandmother and her parents. She had found a poem written by her great-great-grandmother about the evils of alcohol specifically in regards to my drunken great grandfather murdering my great grandmother, and leaving my beloved grandmother and her siblings motherless. Pam additionally forwarded the dates for several newspaper articles about the murder, the trial, and tidbits of my ancestors' lives.

One of the things that struck me was the similarity to my own parents' relationship. Now bear in mind my grandmother never spoke of the murder of her mother; instead she had told everyone that her parents were too poor to support the children so they gave them up for adoption, not that mom was dead, dad was in prison, and they all went to the "Poor Farm" until they could be adopted out for farm labor. My father like his grandfather was an alcoholic, who happened to be obsessed with the idea that any man who came around was going to take his wife, AND they both threatened death by bullet; only my great grandfather went through with it fortunately.

Anyway, all of this got me thinking about generational trauma. The traumas that get passed from generation to generation; sometimes via repetitive patterns, but sometimes by something that get passed through DNA. Although today's blog isn't about this particular story, it is what has gotten me thinking about Generational Trauma (but, there will be more to come on grandma). Instead today's trip into my meanderings is was inspired by a meme I saw last night: "Mama Bear is such a sweet way to describe the fact that I'd tear you open and eat your insides if you hurt my child (the mom life uncensored)."

I've heard the term "mama bear" my whole life, but I never had thought about it that way; like mama is a BEAR who will kick you ass if you fuck with her child, not "oh, mama is a cute teddy bear" or whatever. This idea of a mom who would kick someone's ass if they hurt me is quite a foreign concept to me. In contrast, my mom is, well...not a mama bear. The generational piece of this is that my own mother's mom was definitely not a mama bear. Mom's mom Grace (for those who know me, "HA!") said that her mother abandoned her when she was a child, although she reported that her mother "went back to the Cherokee reservation"...but I just took a DNA test, and guess what, that's a hundred percent bull=shit, so I don't know how much truth there is to her being abandoned, but considering how she treated her children, it's not a hard sell.

So, Grace was probably never nurtured, and she birthed a bunch of children who she likewise did not nurture, nor protect, and was only the kind of bear who would eat her own offspring. Then her children, particularly the women, grew up with scars of their own to pass down to their own children. Now I won't say that my mom would eat her own young, but in her own way I think she tried to be nurturing...I think she at least wanted children, if only so that someone would love her.

Generational Trauma (or Transgenerational Trauma) manifested in mental illness, poor coping skills and poor life skills, and repeating patterns of dysfunction. I see other's in my family breaking these patterns, and others dousing themselves with gasoline and running into the burning house. I have never had the desire to have children, so I won't be sending the curse any further down the line. I've spent about 25 years in therapy trying to recover from my own traumas, and each time I start to untaggle a knot I see that it has a leader thread back to GT. Most notably the fact that my mother was not a mother bear. She did not protect me, she put me in situations as a minor that put me at great risk and often resulted in further trauma, and she did not acknowledge my trauma (because she was always so focused on her own), and since she couldn't acknowledge it she certainly couldn't be an ally, a nurtured, or a healer.

As I ponder this term I realize I know Mama Bears, most notably my friend Mona...who has in fact used that term, but again until last night I didn't get the full meaning. And she is 100% rip your guts out mama bear, and I love that about her. My grandmother (the one who worried about about who would give the baby her bottle when her father murdered her mother, per the poem) was a mama bear for me, and I don't think I would have withstood the storm that was my upbringing without the anchoring in love that she blessed me with in the short time I had her in my life. So, to all of the Mama Bears out there, especially those who didn't have a mama bear who modeled the behavior to them, I salute you!

Thank you! No, thank YOU!

So yesterday my wife and I were out doing our little Community Cleanup project. (Okay, quick side note. So, I started this clean-up project on August 4, 2019...the day after the mass shooting by a racist domestic terrorist in El Paso. I felt helpless, and I wanted to do something to try to make the world a little better. Cleaning the ditch bank was something that was doable and in my power to do. It may not be jumping in front of bullets, or doing field surgery to save someone from bleeding to death, but of the 100 plus pounds of trash around half of it is glass, the majority of which is broken. Each shard of glass I pick up is a shard that won't go through a foot or a paw, that won't cause a life threatening infection. I've picked up used syringes, some right next to a middle school; there's a couple kids that won't be exposed to Hep C or HIV. I'm creating a cleaner environment for humans, animals, and plants. And, I'm hoping that people will see what I'm doing and start being more engaged in taking care of our community as well. What affects one of us, affects us all after all.) Anyway, back to our original programming...

As I'm out there picking up trash I usually have a couple people who are walking by thank me. I've often thought that my response should be, "thank me by picking up any unbroken bottles you see, because they will soon be a pile of 100's of shards of glass, and I spend the majority of my time picking up little bits of glass." And not because I want to be a passive aggressive dick, but because I want people to take ownership of our community, I want them to feel the sense of accomplishment and connectedness I do when I do this, and because every time I go out there is a brand new pile of broken glass in a stretch I've already cleaned, and I get disheartened and overwhelmed and I know I can't do this alone. But that isn't my response. It's always, "thank you."

Yesterday was a little different. One of the passersby called out a "thank you", and I responded as usual. But she didn't take it. "No. (PERIOD) Thank YOU!" I had to pause for a second, and remember what the correct response was...oh, yeah. "You are welcome!" Now why the hell is my response to "thank you for cleaning up the ditch bank" a "thank you" of my own? Well, because I am grateful that someone is acknowledging what I'm doing, and expressing their gratitude.

I don't do what I do for approval, kudos, or acceptance. I do it because it makes me feel good that I've maybe make the world a tiny bit better, even if no one notices.  I do it because taking care of my community in whatever way I can is the right thing to do. And yet it is weird, and uncomfortable just to take a thank you, and graciously return a "you're welcome."

I suppose this is just another symptom of the patterns I developed to navigate my world early on. It is my job to take care of others even if they have more resources than I do. Because it is my JOB to take care of others it would be shameful to expect acknowledgement or gratitude for doing what is my responsibility to do. And it is my job to not have needs, and definitely not express them. I've been having a very fertile crop of realizations about my dysfunctions around care-taking lately; I'll save the others for another day, but this is one that is ripe for picking. It's a small thing, a simple thing, but learning to just say "you're welcome" is an important part of the journey. And it's a part of allowing for the appropriate exchange of gratitude...how dare I snatch peoples gratitude away, dismiss it. It's possibly as important to accept a thank you, as to give one.

Words and okra

I've been digging around in psyche, cleaning out the refrigerator if you will. And I decided to clean out the crisper drawer. You know the one, the one filled with bags of rotten and/or moldy produce that you ignored or forgot about. As I was cleaning out the bag AKA "Epilogue", I found stuck to the bottom a bag of slimy okra. Now, I don't even eat okra so imagine my disgust.

Analogies aside, "disgust" is the perfect name for this particular bag of crap. I'm not going to get into the story, I just am having some curiosity about words. You see when I brought Okra up to my therapist, I struggled to speak about the incident at all, but especially I couldn't speak any words to describe the actions that created the okra-disgust. And I thought I would be able to write it out and send an email, but another "nope". I can't speak the words, I can't type the words...even typing the words in a draft (not intending to send) were out of the question. And in the grand scheme of things Okra is kinda low on the toxic waste list, at least to an outside observation. Having a little more insight I see where some of the slime comes from as it mirrors an event that created a toxic swamp monster long prior to the acquisition of the okra.

It's interesting how some words have so much power over us, or can create emotion, or pop an image into our heads. Take for example "kittens" or "puppies"...sit with those words, and see how they make you feel. Do they make you feel warm inside? Stir your heart? Put a smile on your face? How about "moist", or "phlegm", how do those words sit with you?

Well, these words, they freeze me in place. And something about these words, if I share them, if I create a picture in someone else's mind with these words, it feels like I will fall from the canyon ledge into the never-ending abyss. Of course feelings are not facts; this is something I have preached to countless folks, and reminded myself of innumerable times. As I think let myself ponder this salad of disgust I realize how much of my life is affected by this okra shit. It's curious to ponder if I might navigate the world and my life a little differently if I were able to clear out all of this toxic mess. We'll see how things go tomorrow.