What really gets lost

At a keyboard, I find my relief

So, I have been noodling over the conundrum about why people don’t seem to A) believe me when I tell them I’m having a hard time, or B) really get the extent to which I have to grapple with my issues.

Maybe people just don’t believe that it’s possible for someone to be as functional as I am, and have all the issues I say I have.

Maybe people just don’t know what it’s like to have to hassle with this crap, day in and day out.

Or maybe they figure that if I’m not doubled over in pain, or stammering and apparently struggling for words, or not having visible trouble, then I must be fine. If I don’t look like the kind of person they’ve been trained to look for, then I must not be that kind of person, right?

Uh, OK. I mean, the only reason I reach out for help, is because I genuinely trust that others have the ability to help me. And then they turn out to not realize the actual extent of my issues, and they can’t help me. And I look like an idiot all over again, putting my trust in people who never earned it, to begin with.

If I had my ‘druthers, I’d just stick to my own path and leave everyone else behind. I do appreciate and care about everyone who stops by here to read what I have to say. At the same time, I have such a difficult time dealing with real-life people who love to talk and interact. They do it out of friendliness and comaraderie. They do it out of intrusiveness and neediness. They do it for a million different reasons. And it makes me nuts. Because I have such a hard time following along. I feel like I’m being dragged through the mud. And at the end of each and every day, I am so exhausted from working at keeping up.

Just so exhausted.

It’s not that I’m anti-social. I really do enjoy people. I just get so tired, so turned around, so confused, so frustrated. And the harder I work at it, the worse I become at all the social stuff. Open mouth, insert foot. Oh no – not again. It’s really demoralizing.

And my neuropsych wants to know why I said I have to be ON when I visit them.

They want to know why I used to fear and dread going to see them. I still do, now and then, but it’s much, much less than it used to be.

They wonder why I have been wracked by fear and anxiety at the thought of walking into their office and interacting with them.

Yeah, it’s all that interaction and talking and processing. They’re talking. I’m responding. I’m telling them about things, and they’re summarizing what I say, and I’m not thinking quickly enough to correct the trajectory their ideas are on. And they think that I’m saying something entirely different from what I mean. And all the while, I’m feeling like a block of wood, unable to really talk, unable to speak up, unable to set the record straight.

Good grief.

Oh, screw it. I’m tired. I don’t want to think about this anymore.

What gets lost is everything that doesn’t show up in Technicolor-Surround-Sound.

What gets lost is everything that can’t be put into words in a simple, concise sentence to be parsed out and comprehended.

What gets lost is the fact that I am struggling, that I’ve been struggling for years and years, and I haven’t been able to express it in words to anyone who is able to understand — and possibly help me.

That gets lost — and me along with it.

Unless I get time by myself. With the written word. Away from the talking. Away from the frustration. Away from the disappointment that — yet again — I’ve fallen short of what I wanted to say and do, and here I am… just a shadow of the person I seem to think I am.

Like I said, I’m tired. Enough for one day.

Enough.

Tomorrow I will continue. Tomorrow… onward.

Just not right now.

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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.

11 thoughts on “What really gets lost”

  1. I think there is a combination of factors leading to the misunderstandings by others. I know it may not change anything, but you are not the only one feeling the exhaustion, fatigue, frustration, difficulty keeping up. My kid just competed in a school spelling bee and tied for third. School admin tells me she has no problems as we can see she performs well. But she came home exhausted, too tired to do anything else, including the evening’s homework. And extra-emotional. Others don’t see that and don’t believe her or us. They don’t get why there are many invitations to events that we need to decline in favor of an opportunity to rest. And that so much rest is really necessary. But it is. We have to build that in to the schedule. It’s just what it is. We find ourselves being closer as a family, but the social component is tricky when it comes to expanding her circle and the amount of time and complexity of the activities with others. The sensory overload guides us. As you say, onward. We just try to do it with kindness, openness, flexibility and a sense of humor.

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  2. Hello Broken Brilliant,
    I understand your conundrum my friend. I have come to the conclusion that for people to accept my reality would mean that they would need to process their feelings (which they may not know how to do, or want to for that matter) or they would have to make changes (that they maybe don’t know how to make or do want to make). This leaves us with the realization over what we are powerless. I have come to accept that my family members get what they get and don’t get what they get, and that is OK with me. Better to understand than be understood. Beyond that I need to practice the principle of live and let live, as it is what it is. The above is just some of the awareness’s that I have gained that give me more serenity in my life. What do you think Sir?

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  3. Hey Craig –
    That is very true. People cannot process their own issues and make changes in response to ours, so there we are… looking for some level of understanding and hope in the midst of it all. I can’t let my frame of mind be dependent on the understanding of others. If I do that, I’m sunk for sure. Putting the focus on understanding others does take the sting out of the experience. And reaching out to help others rather than sitting on my own “pity pot” seems to be the one sure way to turn things around.
    Thanks for your words.

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  4. Hey Broken Brilliant,
    Hard pill to swallow at times though my friend. Trying to change people — lead a horse to water that does not want to drink — that do not see a need to change is futile. If I just say it this way, then they will surely get it is a dance that I need to disengage from participation. I tried to do this with certain family members for a very long time.

    Thank God for pain, as when I got sick and tired of being sick and tired of being sick and tired I was able to stop going to the hardware store looking for find bread, metaphorically speaking. I am sorry that you too have this conundrum my friend. I am grateful that some family members have gotten an increasing awareness and understanding.

    This too has been a process. More will be revealed in time. If not, all is good!

    I will say so long for now. Have a great day my friend.

    Craig

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  5. Don’t I know that feeling too! We all choose how to use our energy after a head injury although we look fine, we are not fine. Howcome you can do this but not that. Well you should see me after 😉 so I know the feeling. And the people that really know me, like my mother, can always see it in my eyes.

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  6. Yes… just yesterday, I got up after less sleep than I needed, feeling terrible, dizzy, sick to my stomach, feeling fuzzy and not thinking well at all. And my spouse says to me, “You look great! You look very rested!” How ironic. 😐

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