I’m up early today

Cutting through the cloud

I’ve been getting to bed around 10 p.m., which is good. And I’ve been waking up early, which is also good. I just wake up. Then I lie in bed for a while, stretching and just feeling comfortable. Then I have to get up. I can’t just lie there. I have things I want to do, before I go to work. So, I get up, make myself breakfast, and then sit down to work on things that are mine, not someone else’s idea.

I’ve been finding some really cool pictures, lately, which visually depict how I’m feeling. I found pictures of underwater sculptures by Jason DeCaires Taylor at http://www.underwatersculpture.com/sculptures/, and they seem to depict how I feel, pretty much every day.

I’ve been trying to summarize for my neuropsych the different aspects of my personal situation that they haven’t been acknowledging or addressing. They have been treating much of what I deal with like it’s an emotional reaction to stuff, rather than seeing that I’m really struggling to express what I’m experiencing.

I’ve ignored their cluelessness for years, because it’s worth it to me to have someone to talk to, and just being able to talk to someone and practice organizing my thoughts out loud is worth the world to me. But it’s so frustrating for me to try to articulate what is happening with me in words. In writing, I can do it. But when I’m sitting in front of someone, being watched, I tend to lose it. I get so far, then I have to stop. I can’t go into details. I’ve had too many bad experiences, trying to disclose my issues to others, only to have them either freak out on me, contradict me, or make fun of me, or tell me I’m lying.

I don’t “present” like most brain-damaged folks do, so the depth and range of my issues do not really come through, loud and clear.

So, this is just one more person in my life who doesn’t know and doesn’t help in some ways.

But they have helped me, just being there… and also being very focused on human performance and improvement. Most of the people I know aren’t interested in really pushing themselves to be better, to get better, to live better. They’re happy with just relieving their pain — pain they cause to themselves.

It’s an endless cycle with most people I know:

  1. Get sucked into bad, destructive habits of thought and action:
    • Don’t eat right, don’t exercise
    • Get caught up in negativity and pointless drama
    • Get all worked up over misperceptions and mistaken impressions
    • Fall into the customary abyss of negativity, criticism, and frustration
  2. Suffer each and every day, each and every waking moment… usually without realizing it.
  3. Long for release and relief. Usually without realizing it.
  4. Do things that will relieve the pain and suffering they have caused themselves, thinking that it represents progress.
  5. Just be happy that the pain is temporarily gone.
  6. Get up the next day and go back to doing the things that cause them pain and suffering.
  7. Wash, rinse, repeat.

My neuropsych is actually not into that at all, and we are on the same page, in terms of breaking free of all the bad habits of thought and action that stoke human misery.

They’re just sorta kinda wrong about the source of much of my pain and suffering. I know there are things I do which make my life more difficult. Not exercising as much as I should, eating too much sugar on some days, and sinking into frustration and despair are some of the things that drag me down. But not all of these things are caused by poor habits of thought and action.

Some Most of them are because of my TBI issues, which I really struggle with, even though they don’t show. Most people don’t know how often I am in pain, am confused, am turned around and don’t really know where I am, or I literally feel like I’m dying. I know how to keep going without making a fuss about things. I keep going, because I know that a lot of this stuff is temporary — or if I can just get my mind off it, I don’t have to be held back. So, I focus on other things. And life goes on.

I don’t know why I am so concerned about my neuropsych not knowing what all is going on with me. Maybe I just reached a point of critical mass, where I realized just how different their perception of me is from my personal experience. Maybe it’s because of the whole neuro involvement, where the two of them will (probably) be talking to each other, comparing notes, and there’s a chance that their two perceptions of me will be very different, so they’ll both think I’m lying, and I’ll be back at square one. Maybe I’m just tired of hearing the mini-lectures about how our minds give rise to everything.

There’s a whole world view called “mind-only”, and I suspect my neuropsych adheres to it. I have my own take on that. But it’s too complicated to go into, right here.

Bottom line is, I’m up early, I have a few hours to do what I like, till I head out to work. I’ll get some more exercise, I’ll work on my projects, and I’ll prepare for the day. I may even get to work early, so I can make up for some of the billable hours I missed yesterday.

We’ll see.

Onward.

 

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

10 thoughts on “I’m up early today”

  1. Hi BB,

    I wish I had some practical advice to offer – but you and I are in the same boat!

    Re: “I don’t “present” like most brain-damaged folks do, so the depth and range of my issues do not really come through, loud and clear.” BOY can I relate to that one!

    I always seem to be functioning better than I am – even at times when I have been so dysfunctional that I could barely get myself out of bed to take a bath, brush my teeth, and dress in anything besides whatever I slept in.

    It has always frustrated me beyond belief that I can be LITERAL in my description of what’s going on, and nobody in my life seems to get it, or believe me, or something – not even the professionals in charge of my care. I’m truthful to a fault – and highly articulate.

    I have even explained exactly that to my shrinks and psycopharms through the years – that I ALWAYS seem to be functioning better than I am – if they want to know how I’m doing, they must listen to my words and interact with me from WHAT I SAY, *not* taking their cue from my affect.

    I KNOW they don’t get it — they would never say what they say to me if they did. What? Unless I attempt to kill myself, I’m merely hyperbolizing?

    Even KNOWING the repeated hell I went through in 2014, leaving me unable to work AT ALL for over a year, they think I’m still at the top of anybody’s game? It’s a bloody miracle I survived intact at all (and the jury’s still debating that one ::only half-kidding::) Do they think I’m exaggerating the events of the year? Is it a total failure of empathy?

    Re: “I don’t know why I am so concerned about my neuropsych not knowing what all is going on with me. ”

    DUH! If they don’t get where it itches, the likelihood is high that they will be scratching in the wrong place. How is that helpful? What are we paying them for – simply to be quiet while we talk and they write? For access to a prescription pad?

    In my considered opinion, the greatest failure of the helping fields is the failure to train the skill of what I call **Listening from Belief**

    I write about it (and have included it in my ADD Coach Training since the dawn of the field), but it seems to have remained a concept that fails to kindle a meme. I can’t even get my own pros to attempt it.

    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    “It takes a village to educate a world!”

    Like

  2. Wow – now THAT rings a bell. So much in there makes total sense to me. And I feel a lot less alone than I did, not long ago. Lots of people are checking in about this and sharing their own experiences, and this seems to be such a common thread, you’d think that someone would have addressed this professionally by now.

    But no.

    I mean, it really is bizarre,isn’t it? Something so core and so central to the recovery and care profession should be taught from the get-go and hammered into people’s heads, semester after semester, year after year, decade after decade for those training for healthcare and then later practicing. Perhaps we will see a change shifting in the coming years, as the focus on healthcare is turned more towards results, rather than simply providing service.

    I have heard in the news that there’s going to be more of a focus put on that, and it will be interesting to see what comes of it.

    At the same time, however, if providers are clueless about what’s really going on, and they don’t get that they are missing things, what can you do? Conundrum.

    Argh! How profoundly frustrating. We really ARE on our own, in so many ways.

    Liked by 1 person

  3. Again, a horn I’ve been blowing for over twenty years and something I write about on ADDandSoMuchMore that remains a concept that fails to kindle a meme: the inadvisability of failing to examine one’s “come-from” (personal world view).

    Our come-from filters our perception — it determines how we interpret what we experience, usually in a black and white fashion.

    Said another way, what we “listen FOR” is a product of where we “listen FROM.” Most people STOP listening as soon as they hear something that validates their come-from, as they begin formulating their response. The remainder of what is said might as well be blah-blah-blah.

    They have not been listening to understand, they have been listening to explain, refute or “fix.” Couples therapists and coaches are fond of pointing out that it’s what goes wrong in relationships – yet they frequently fail to apply it to their own listening (which also extends to listening to validate a diagnosis.)

    My stand (and the name of my company) is that we all deserve Optimal Functioning as a birthright. Incremental improvements cannot be the end goal. Good enough functioning is not good ENOUGH. And yet, many too many care professionals practice as if they seem to believe that “better” is good enough to stop trying for more.

    Oh goodie, yet another part of a significant problem where human health is concerned – mental or physical – and why so many of us are so frustrated with the care we [don’t] receive. Too bad we can’t get them to read our blogs, huh?

    If we want things to change, we must provide feedback “live” – to call them out for not listening, rather than attempting to explain in yet another way (my own Achilles heel!)

    MY problem is that I need flashcards! When comments show up in an expected fashion, I have no problem calling them on it – which is the ONLY way to ever change the dynamic. When faced with some new and different demonstration of a failure to listen from belief, my brain stutters (PFC shutdown – the “startle” dynamic common with ADD/EFD – including TBI). Only afterwards do I think of what i could have said.

    I guess the solution is to take notes, developing the habit of beginning each session with what didn’t work about the last one!

    HOWEVER, if we are faced with the task of educating our care providers, why are WE the ones who have to take out the checkbook. Wouldn’t it be more appropriate for THEM to pay us?

    Maybe I need to put that on a flashcard!
    xx,
    mgh

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  4. OMG, this is awesome… It is SO true — my neuropsych should totally pay me to show up each week.

    And that’s 100% correct, about them listening “From” and listening “For” — and then spending all their (and our) time thinking about what to say in response.

    Calling into the void… Oh, heavens.

    Anyway, it’s true. Flashcards might come in handy. Although my own PFC shutdown would probably keep me from remembering to use the flashcards.

    Sigh.

    Oh, well. We’re still here.

    Like

  5. Communication FLASHCARDS, Mr. Brilliant – we need to make and sell them. THAT’s the next Pet Rock idea!!

    Just THINK of the number of variations – the spin-off opportunities – the Pins & FaceBook status updates & blog posts & tweets and snaps, o my. The merchandising rights alone will make us rich.

    We’ll be invited to speak at TED to tell the world what we think – and we’ll be interviewed on television and radio. ALL of which will sell more Flashcards.

    WE’RE SAVED, BB! Who cares if our care providers EVER get it? By the time the trend passes we’ll be SUPER RICH!

    I’m planning on retiring and moving to one of those multi-million dollar penthouses in Manhattan with my half — with a STAFF to compensate for what I cannot seem to do.

    I’ll probably buy a vacation home in Hawaii – maybe Paris too — and an airplane to shuttle all my friends and I around on my 1% whim. Shoot, I’ll have an adorable pilot whom I’ll pay to be on call (who is a FABULOUS dance partner & sommeliere). We’ll take the four-star chef with us.

    You?
    xx,
    mgh

    PS. Can you copyright or trademark an idea? (Nevermind, nobody ever reads the thread of blog comments anyway)

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  6. Well, it certainly sounds like a plan 🙂

    I know the secret to a well-received TED talk. First, you get up and tell people you have been active in your professional field for 10 years. Then you say you have a confession to make. Then you present PowerPoint slides with statistics, tell some revealing story about yourself, tear up a little bit, and then urge people to think outside the box and don’t be afraid to a) challenge convention, b) take better care of themselves, or c) take some substantive action that produces measurable results.

    All that property owning stuff sounds complicated. I’ll leave that to you. I’ll take the money and run to the north woods 😉

    First flash card should read: Dude – WTF?!

    Liked by 1 person

  7. WTF lol

    True story: a 6’4″ male friend of mine with multiple problems (several chronic and life-threatening), actually SCREAMED at one of his docs, “Stop being such an a-hole!” (only he used the term). The doctor stopped, wide-eyed, and (after a stunned minute or two) actually apologized. The two have been happy combatants since – and my friend has gotten excellent care.

    Maybe we need a few “last resort” flashcards and a stick to insert them in so you can hold them up for them to read. This could be #1 in that series.
    xx,
    mgh

    PS – I KNEW I was right about the tech-hex – guess whose keyboard has non-working keys NOW? Plus my computer has slowed to a crawl since I left the last comment on your spacebar post (despite force close etc.) Plus, I updated my iPhone os and NOW it won’t let me verify the phone, so I can’t bak to cloud. I HATE TECHNOLOGY!!!

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  8. Providers don’t get it, I think, for a number of reasons:

    1) They are human beings who are trying to address circumstances that are difficult to watch on a daily basis.
    2) They have been traumatized by their experiences, and they don’t know it.
    3) Their reactions come from reasons buried deep in their autonomic nervous systems, but they don’t want to admit that they are not the ones in total control ALL THE TIME. They need to feel like they are capable of dominating the situation.
    4) They are not nearly as smart and as educated as they think they are.

    Etc.

    Always good to do a reality check, now and then.

    Liked by 1 person

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