Back to bed

I woke up early today. Too early.

We were expecting company this afternoon, but we cancelled.

My spouse is sick, and I am tired.

So, it’s back to bed. I need the rest, when I can get it.

I can do the whole “onward” thing tomorrow.

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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.

13 thoughts on “Back to bed”

  1. I get so frustrated. I find an excellent therapist, but it seems obvious to me that she attributes all my symptoms to c-ptsd. I just want my experience heard and believed. Yes, I’m diagnosing myself. No, I’m not looking for pity or excuses for a crappy life. Yes, I believe that I’m one of the lucky ones who can actually still have behavioral choices to make, no matter how difficult, that will influence prognosis. Yes, it is a very lonely place and has been for 27 years, but most of the years I didn’t see the loneliness because I didn’t feel the losses. Getting better slowly again means getting more aware of all that is lost. And depression is a normal reaction. I try to be grateful for what she does get and it is a lot. Brain injury took me 25 years to see how it played on a life that went in circles, went nowhere, and a self that could not recognize itself but “acted” and “looked” ok for most of the time. It is back to how a mind could think logically but tires quickly and this lost sense of self that cannot be adequately described. Utter grief. A soul injury? Many returning troops, ex-boxers etc. and many other tbi survivors know. It’s more than ptsd. And/or different.

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  2. Someone once said, “If the only tool you have is a hammer, everything looks like a nail” and I think that’s very true of therapists and PTSD. The problem is, by looking only at the symptoms, they miss the chance they have to address the underlying conditions. Loss of self is a huge issue with TBI. I struggle with it constantly, and there is no straightforward path to restoring it. It’s not like losing your house in a fire. That can be replaced (although the memories and valued possessions never will get 100% replaced). You know when you are back in a house, living your life as “normally” as can be expected. But with TBI — especially regarding the devastation of loss of self — it’s not nearly as straightforward.

    The devastation never completely goes away.

    And yes, as we come out of our fog and start being able to detect just how much we have been impacted by our injuries, things get even harder to reconcile. Loneliness moves in like out-of-town relatives who need a place to “crash” while they’re visiting. And the visit never ends. It makes itself comfortable, it sets up shop. And the clearer we get about how life is and how it could be, the more painful it is.

    That’s been happening with me over the past year. Having a shorter commute has allowed me to catch up on my rest and also de-stress to a great degree. But the more energy I have and the more clear I get, the more depressed I feel at how my life has evolved. And the fact that I used to have great plans… well, that just makes my heart sink. I wish to God, I weren’t so grateful to simply break even. But there it is.

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  3. You’ve probably gathered by now that I am reaching out. I need my experience validated and this blog has done that. My therapist is excellent at what she is trained to do. But you are correct or the saying fits, she is holding a hammer and sees nails, and there are nails, plenty of them. But this grief and brain fatigue is much deeper than the trauma issues. And I hate whiners and I feel that since there is a disconnect in that my injuries are not just psychological, I find this pathetic whining in my voice. I believe that I should feel gratitude and yes, I still believe that I’m one of the fortunate ones. But I need help or I will never get to use the blessings that I have been given. My fiance does not understand. People look at me as if I just wasted my life. I admit that I screwed up big time and I’m foggy on how. But this level of disdain I feel directed towards me and I almost am tempted to join in because I can’t stand either what became of this life. I’m 52 and feel that I must be an actor and just keep the truth to myself because it cannot be seen in all of its complexity. The better I get, the worse I feel not only knowing that I’m at fault but that so much was lost that was not my fault. And I feel so tired physically but knowing if I got a break or was in place that accepted me I could do something really positive with the remains. Of course, this gets interpreted as a ptsd tendency to look for a hero. My mind works better than average in many ways, but it gets over-rated which leads to more scorn for me adding up a life of 0. They have seen the symptoms but off a bit on the cause. The closest anyone has gotten is high functioning autism with ptsd.

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  4. BB your writing and sharing of your life helps me. You are probably one of the only non-military person who I’ve come across that gets how surviving a brain injury works. of course the experience is different for everyone, but i think the biggest factor is the brain injured are on different points of the recovery. In 2002-2004 I was in a place that was not too different than where I am now. And then I got hit with another brain injury in 2004 or 5. Looking back I see the pieces of the puzzle more. Not everyone, by any stretch saw me as most professionals had. In 2003 I started to think that maybe my struggles weren’t exactly as I had been told for many years. I dated a person with a psyche background in 2004? and she had seen me around town for several years. She was a kind, intuitive, observer type. She surprised me so much when she said once “honey, that’s your autism”. Until that point, she would say things like “sometimes you say things that you don’t mean” and “people don’t understand you at all” Also, I had overheard a discussion of healthcare workers who were treating me and one seemed bothered and adamant- something about he (me) has asbergers. And another time at a coffee place when a middle aged lady sat next to me a few times and spoke about her daughter with asbergers. Once, a man observed me staring for a long time without me realizing it and he told me about his brother- he owned the eatery and said this ones on me. I remember thinking “what was that all about” “absence seizures?” And I have one sister who knows me best and she would send me youtube videos about asberger’s. But I started to think that there was real dividing mark between this clueless behavior and it was 1991 and then I started thinking about the nurse so elated that I had “woken up” and how in the homeless shelter they through me in a shower and gave me a note to give a welfare person that week and how I had trouble expressing myself. I started to think back and say to myself a depressed person does not suddenly lose knowledge of the etiquette of dating for a year or forget in a feeling way his passions in life. And doesn’t not contact people he cared so much about for a year and not even know that he was neglecting them. Unless there is a sudden worsening of asbergers and depression makes you only have a biographical memory but not knowing that biography is you, then there is something else wrong. And this year as I began to look at how I felt so different than my relatives and how I had different types of memory that seemed so different- one damaged and one not at all if not better than average, and then remembered how I thought someone looked exactly like my sister for a week and then saw her a month later and said what the heck was I thinking. (2004-5) Well, I started to remember- two cars totaled ambulances and head injury (only concussion) and getting thrown down steps 1990 and dragged to a lot waking up 12 hours later (only concussion) and all my years on the soccer field and the skiing collisions and just having my bell rung so many times and then the siezure status epileptic and the coma and well, another picture emerged and how I related so much to Oliver Sacks books “awakennings” and “The man who mistook his wife for a hat” and I just think there was more to my problem and being “so smart” did not help a thing because I’m feeling “so dumb” on so many levels.

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  5. While I was writing you responded. BB I’m taking up much space here, If you do not approve one of my entries. Please, I will not take offense, you have a great blog. Thank you.

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  6. Not at all luka. I was just too tired to respond the way I wanted to last night. Now I am awake and more functional. Everything you have said is true and deserves a decent response.

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  7. Again, what you have written is so true, and I can relate to so much of what you say. I do relate to veterans and first responders — not because I have ever been in their shoes, but because I know what it’s like to be dedicated to the protection and service of others, to be always on guard, and to have gotten injured in the “line of duty”. My own situation pales, compared to what they face each day, but I know that feeling well, of being constantly on guard because of a sworn duty to serve and protect… as well as a genuine desire to contribute to society at large in important, fundamental ways.

    The experience of being “so smart” in some ways and feeling “so dumb” on many levels is also familiar.

    I think that when we lose our sense of self, it can make us feel like complete idiots. The mastery we developed over years of learning to deal with specific situations in specific ways… that’s gone. And in its place is a set of abilities and skills which may be impressive (or at least adequate) to others, but are not familiar to us — almost like it’s not really us.

    This is what I struggle with, myself, as I go through life feeling like a stranger in my own shoes. Everyone around me says I’m doing great. I’m a “rock star” at work, and at home I’m vastly improved over how I used to be. No more daily explosions. No more melt-downs while holding a kitchen knife. No more sudden out-of-the-blue blow-ups over something that no one else can see or understand.

    That hasn’t happened in quite some time, and I’m actually able to take care of my home with a level of skill that not only matches but sometimes exceeds the skill I had before my fall in 2004.

    I do have a lot of wins under my belt, these days. And yet, sometimes I cannot shake the feeling of not being myself. I don’t feel like I’m in my own skin. I feel like a stranger in my own world — the world I have supposedly built myself. It is all but impossible to describe and explain to people who do not understand.

    Yet all of us who know what it’s like, recognize it immediately.

    Parallel universes, parallel worlds. And parallels by definition never intersect.

    Ah, well. Such is the tapestry of the life we weave.

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  8. The grief and fatigue, I find, actually get worse as I become more aware.

    So many years, I spent thinking that it was impossible for me to dream bigger, to live larger. So, I didn’t aim very high. I was only interested in maintaining…. keeping steady and level and safe. Because so much around me was not safe, and so much within me was not safe.

    To say that I suffered from my TBIs until I started active rehab in 2008 would be an understatement. I was in constant pain, constant confusion, never understanding what was going on around me, not realizing my deficits — and certainly not realizing there was something I could actually do about them.

    The more functional I have become, the more clear it’s become to me that I didn’t need to suffer, all those years. I didn’t need to settle for less. I didn’t need to settle for the friends I had and the jobs I held. I could have had more. I could have been more.

    But now, here I am, about to turn 50, looking back on the last half-century, realizing how much I lost. I realize how much I lost, just in the last 10 years after my last TBI. All the money, all the sanity, the stability, the future. My formerly planned future evaporated a little more, with every blow-up, every melt-down, every lost job, every wrecked relationship. And my presently planned future now depends on people never, ever finding out what happened for real, back in 2004-2007, when I was a ‘traveling circus’ of stupidity and insanity and rage.

    What a waste.

    But even though I suffered, even though I struggled, I miss my old self who knew how to soldier through, no matter what. I miss my old hard-headed self who was always up for a challenge and didn’t let anything get in their way. I cannot help but wish that I had been able to join that old intrepid version of me with the “me” I function as now. What a team we would make.

    But that’s gone. That’s lost. And as much as I work at things, I still have the repeated sense that I am living in a stranger’s world, and I don’t recognize myself. It’s like I’m watching myself from a distance, cheering myself on, but not really feeling connected with what I’m seeing.

    It doesn’t even feel like “me” sometimes.

    And I’m not sure I ever will. I write about restoring a sense of self, and yet I have to honestly wonder if it’s even possible to restore the old sense of self. It’s like I’m building a new sense of myself that’s functional and increasingly familiar, yet will never be the “old me” that I once took for granted.

    Maybe that’s for the best, however — not taking it for granted. Maybe that’s what it takes to get the kick in the butt I need to get real and be real — and also experience compassion and empathy for others.

    We all struggle, some of us in ways more similar to others. But we all do struggle.

    In spite of it all — or perhaps because of it all — onward.

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  9. I remember before the tbi’s made its hidden confusion a part of life as I know it. I had been in therapy for depression/ptsd and the therapist speaking of how I will see healing of depression more through feeling than intellectualizing. Well that holds up still today in my struggle to understand these new set of skills that are “impressive” and/or “adequate” even if they don’t feel like me. I am competent through the back door of tbi. Again I arrive at the loss of self. And this is why this blog has been a source of healing and encouragement. I feel when I read your blog. I feel the grief in the most authentic way possible, by Reading your posts, posts of followers and my own. Yes for the first years of the 90’s my intellect was damaged in obvious ways and I could quite grasp who the dummy was. After all these years, I saw more that it was no longer a dummy I didnt have connection to but one with a new skill set, wisdom blessing, and a natural empathy much stronger for me fellow man. But it meant little for the damaged area that brought sense of self was stepa behind the intellect. In fact I remember eight years after the coma an old friend saying “when did you get so smart?” I saw a little of the “smart” the old friend referred to but I saw little of the “you” hence the chronic pain of life each day. I say that my visiting your blog these past six years has been much less to gain information, and much more to gain a stable identity base, one that was bourne of tears and the direct state of my existence. There were days I was crying after three sentences and once a very first sentence you wrote brought me to tears on a day I felt that I was here for information or lite connection. Why? I found myself in your words in a way that I never thought possible. Not “your” words but an experience of another human that was not attempting to mirror me, that seemed impossible but a fellow human who was a man, brutally honest and speaking what I know to be truth. Luka

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  10. And that, my friend, is the power of the web. We are connected in many, many ways, some of which we never even realize until we are surfing around online and just happen to discover something that seems to ring truer than what we have heard anywhere else. It has happened to me many times, and I’m grateful that this blog has served you.

    Peace

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