Finding “normal” again, after all the … TBI “stuff”

So much depends on our view point

Okay, I know that when it comes to recovering from traumatic brain injury, the concept of “new normal” is not my favorite. I have heard so much advice from well-meaning individuals to “accept your limitations” and “get used to things not being as good as they used to be”.

Please. I’m not saying anything more than that, other than that.

Please.

Even the concept of “normal” is not my favorite. I think especially when it’s defined by others, it can be a trap that’s almost impossible to get out of. So, let me define “normal” for these purposes as being a state of mind and body and spirit that is balanced and feels usual — a way of experiencing and being in the world that doesn’t freak you out and put you on edge and make you miserable or anxious… but is part of your regular everyday life. It doesn’t have to do with others’ definitions of how you should being, but rather it’s about how you know yourself to be — and accept yourself. “Normal” life can include stresses that are customary and expected in the course of your everyday life. It can also include an incredible sense of well-being, in spite of all obstacles or difficulties you must overcome.

That’s where I’m at today — it’s not a “new normal” for me. It’s a new take on the old “normal” that used to be part of my everyday world. It’s taken a lot of work and time and energy, but it’s happening for me.

I wish it could happen for more people. Too many individuals give up too quickly, too soon, in the face of seemingly “permanent” conditions — those supposedly “it is what it is” circumstances are anything but permanent. But life is impermanent by nature. Nothing stays the same. And the only reason things remain permanently “effed up”, is if we just stop trying to turn them around.

That’s what so many of us do after a hard loss — whether it be the loss of a loved one, a job, a home, a planned future, and yes, the “normal” life we had before TBI. We just give up. Or we decide that we’re not really cut out for a regular life anymore, because either we don’t deserve it, or we don’t think we can deal with it, or we can’t see our way through to the other side, or we simply run out of steam and get way too tired to deal with much of anything.

And then we adjust to our “new normal” and hope for the best. As though that will help anything.

To me, that kind of acceptance is murderous. It is the exact opposite of what we should be doing after TBI, or any other kind of hard loss. The brain is “plastic” — it adapts and changes based on our surroundings and what we demand of it, and it needs to be retrained. It needs a lot of rest and water and glucose (and I suspect that the main reason for my splitting headache this morning, is because I didn’t give it enough of any of those three things all day yesterday), but if it receives the right TLC, it can — and will — learn to do new things in new ways — or learn to do old things in new ways.

See, that’s the thing — with TBI your thinking can get very rigid and literal and stubborn, and your brain can start telling you that there is ONE WAY AND ONLY ONE WAY TO DO THINGS (and yes, it will tell you that in a very loud voice). The old ways were “right” and the new ways are “wrong”. The old ways were the “only” way, and the new ways will “never work”.

Silly. There is never only one way to do things. There is never only one right way to get from Point A to Point B. There are lots of different ways — we just need to take it upon ourselves to find those different ways, and train our brains to handle life in a slightly different way.

Of course, you tend to get tired, in the midst of all of this. And when you get tired, your brain tends to work less well. That’s a struggle I’ve had for years. However recently, I’ve discovered a way to mitigate the effect of fatigue. It’s not that I’m less tired — I’m pretty wiped out, right now. But I don’t get as bent out of shape over being tired, as I used to. I recognize it, I take it in stride, and I get on with my life anyway. I do what I can, when I can, and I don’t worry about the supposed disaster that may come on the heels of being wiped out and mentally out of it.

I just accept the fact that I’m dog-tired, and I deal with it. I live my life anyway. If I can catch up on my sleep, then great. If I can’t, I don’t worry about it. I factor in the fatigue in my daily life, and I make the necessary adjustments.  I can tell that things aren’t nearly as peachy as they used to be for me. I can tell when I’m a lot less sharp than when I’m rested. And I can really tell when fatigue is really chipping away at my patience, my self-control, my manners. But I don’t let it derail me like I used to. It’s not a tragedy anymore. It’s a pain in my ass that I just need to recognize and deal with, and do the best I can in spite of it all.

This is a monster change for me. The whole realm of physiological after-effects of TBI really threw me for a loop for a long time. I have been hung up on how much my cognitive state suffers from fatigue and stress and anxiety and physical pain. I guess it was pride, really — I don’t want to seem stupid or be the brunt of others’ jokes and ridicule, and when I’m tired and in pain and not doing well, I’ve not been able to handle myself well in the past, so I’ve ended up taking a lot of sh*t from people who didn’t know better. And so, when I would be over-tired, or in pain, or practically deaf from the ringing in my ears, or dealing with some other TBI-related problem, it would make me really anxious and upset… which made everything worse.

In the past months, however, I’ve let a lot of that go. Maybe I just let the whole pride thing go, because I realized it wasn’t worth it, and the only one who has really been keeping tabs has been me. I think that stretching my back and neck on a regular basis has been very good for me. When I crack my back or neck (and it doesn’t take much – I just need to bend or lean in different directions), I get this rush of really great energy and relief, like my brain is actually able to communicate with the rest of my body through my spine. And my head clears, I’m less foggy, and suddenly the colors are a lot brighter than they used to be.

Nice.

Also, I shifted my focus away from remediation of my issues (like trying to catch up on my sleep after the fact), to the Bigger Picture — just living my life the best I can, under all conditions, good or bad. I’ve gone from managing every single aspect of my day…. to letting it all just fly free… to learning how to pick and choose the things I’m going to concentrate on each day. I’ve trained myself pretty well to do the basics again. I can get myself out of bed, have my breakfast, and get ready for work without losing my temper or forgetting if I’ve washed my hair. I’ve figured out how to get myself to work without incidents from my light and noise sensitivities, and I’ve figured out how to structure my days so that I’m doing the things I care most about when I’m the freshest and most with-it.

Now that I’ve got that basic functionality down, I’ve been focusing on relaxing and getting myself in a good space… or, if I’m not in a good space, realizing it and training myself to just deal with it. I used to be pretty good at keeping it together under 85% of difficult conditions. Then, after my TBI in 2004, that slipped to about 15% of difficult conditions, and that’s when my life started to fall apart.

I would say now that I’m getting closer to that 85% I used to be at. I’d say I’m probably doing pretty well under about 75-80% of difficult conditions — I’m not yet performing at my peak, but I’m holding it together and keeping my sh*t together much better than in recent memory, and I’m not having hardly any of the meltdowns that I was having, only a few years ago.

Which is good. I had a bit of a blow-up, the other night when I grilled up some killer steaks, and my spouse decided to take a shower just when all the food was ready to be served. I ended up with a tough piece of meat, because they waited till the last minute to do something they could have done all day, and I lost it. I lost it even more when they acted like I had no reason or right to be upset. I had a long day at work. I was hungry. It was late. I just wanted to enjoy my steak. But no… Oh, never mind. What’s done is done. The thing I need to realize and remember is that sometimes I have every right to be upset, and sometimes I am going to get upset. It’s just that I can’t let it take over and run me the way it used to. I need to let it be about being upset — not being upset about being upset, which is what gets me. And after all is said and done, I definitely have to let it go. And see how I can possibly avoid that next time.

Management issues. Hm.

Well, speaking of management issues, I’ve got to get going and get into my day. I’ve been working on my “stress hardiness” training — consciously trying to toughen myself up and not be so sensitive to the ups and downs of the everyday. I’ve got to get tougher, that’s for sure. Not “ram tough” and all aggressive and over-the-top, but resilient and able to take a hit without collapsing into a heap. I need to get a thicker skin and do better about just dealing with stuff, instead of letting it take over my head and make me crazy. I used to be like that — as I said, 85% of the time. And I am getting better at it.

It’s all about conscious practice — training myself to deal. In some ways, I feel like when I was a kid, and I was learning to do all kinds of things, like handle myself in the adult world. That’s how it feels right now, and while it is kind of strange and deja-vu, it’s like I get a second chance to learn how to do all this stuff. The “first time around”, when I was dealing with TBI stuff and didn’t realize it, so much of what I learned was inaccurate or just plain wrong.

Now I get a “do-over” and I can get my act together in ways that I thought I was before, but actually wasn’t. I can take a new shot at things and lay another foundation for myself, starting from scratch in many ways. It sounds strange to me — I’m nearly 50 years old, and I feel like a 10-year-old kid. But in so many ways, all of us needs to reinvent ourself in one way or another over the course of our lives. Some of us have to do it many times over. So, it’s not so strange or unusual. It’s actually pretty normal — perhaps the most normal thing of all, when it comes to being human.

I think maybe this is what my neuropsych has been trying to explain to me for years, now — that it’s in the nature of human beings to change and grow over time. We don’t always have a say in the areas where we need to change and grow, but we do have a say in how much we accept and adapt to that need for change, and the energy and determination we bring to that change.

How we define “normal” is up to us — if we don’t do it ourselves, someone else’s “normal” can end up defining us.

Onward…

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.

9 thoughts on “Finding “normal” again, after all the … TBI “stuff””

  1. This has needed to be said loudly and clearly for many years. You nailed it! Thanks for taking down a barrier that holds many of us with brain injuries back from reaching our potential. I am also finding Mindfulness Meditation as a way to help me. Keep up the good work!

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  2. As ALWAYS, BB, great post — beautifully languaged, heartrendingly vulnerable, and though provoking.

    Thank you.
    xx,
    mgh
    ~~~~~
    Madelyn Griffith-Haynie, CMC, SCAC, MCC
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    (blogs: ADDandSoMuchMore, ADDerWorld & ethosconsultancynz – dot com)
    “It takes a village to transform a world!”

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  3. I am not a follower of this mind over brain matter train of thought. Neuro-plasticity is grossly over stated. The brain has over 4000 different classes of neurons. Each class has a myriad of sub-classes. The parts of the brain that can avail itself of neuroplasticity is very limited. It is mostly in the sensory processing and more primal areas. There is no map of brain wiring that can be transferred to other areas. The axons and dendrites take years to make the proper connections, and this is with a healthy brain and plenty of appropriate stimulation.
    If we observe the rehabilitation of the severely TBI’d, especially those who have been comatose, rehab time is often directly related to the time in a coma. This rehab has two distinct functions. The primary function is to awaken the comatose connections. These connections get very sluggish very quickly. The most primitive recover fastest. A baseball infilelder knows this well. He can walk and run around the field without a need to practice running around the field. For the more specific movements and actions related to the defensive playing of the game, they challenge their response/motor control by making a movement as the pitch is thrown. This invigorates the nerve signal routes so they will fire even faster based on the need of the situation. Imagining the required movements is also helpful especially if there is a little bit of muscle movement during the imagining.
    The comatose brain is the same. It is like walking a trail in the forest. Walk the trail regularly and it will be readily visible. Leave the trail dormant for any length of time and it will start to be hard to recognize. The sooner attempts are made to walk the trail, the faster it become obvious. The longer it lays dormant, the more times it will need to be walked to be obvious. These forces walkings on the trail are the first part of neurorehab. Once they have reached a useable level, there can be attempts to blaze new trails around blockages. But, the trail on the other side of the blockage must be functional or it will take many repetitions to make it recognizable and functional.
    We can push and force to do things the same way. It will take great effort/stress. Or, we can learn other ways to do a task. It starts with accepting that we need to try a different direction or process. Even healthy ‘normal’ brains need to make these changes as the brain naturally deteriorates. If we know the end goal, we do not need to use the same old path and process to accomplish the task.
    If one reads the research, there is a common thread. Stress is a negative to brain function and its negative effect on the brain increases as we age. Multi-tasking is a stress on the brain. This has been proven scientifically. Some brains have a bit more tolerance than others but they are still stressed . Having a goal of being successful at multi-tasking is not worthwhile. It actually causes damage to spend time trying to multi-task.
    The world at large tries to define everything in the terms of ” Is the glass half empty or is it half full ? ” the better question is “Is the glass too big ? ” I challenge anybody to show me somebody who is constantly working at peak levels who does not leave a wake of damage behind. Family, co-workers, finances, health, and more often than not, a vast myriad of strangers. Just because the high performer does not know the strangers does not mean the strangers have not been negatively impacted. If a tree falls in the forest and nobody is there to watch it, did it make a sound ? The high performer would usually say no, because only his perspective counts. They even try to define when someone else has been negatively effected, the negative part is their own fault. I used to think this way.
    Someone mentioned mindfulness meditation. This actually goes against the idea of pushing to obtain or maintain the old normal. MM is about focusing on the important issues and letting the rest that usually cause chaos drift into the background. Only two or three variables can be balanced without extreme/stressful effort.
    I have lived with TBI since 1965. I have slowly adapted to new ways of living and working, especially as i have gone through stages of deterioration.. When I fight these changes, I and usually many others around me, pay dearly. When I accept the need for these changes, the trauma in and around me is greatly reduced.
    What I have found to be the most important concept is simple. Only I have the perspective to grade my efforts truthfully. Others only see a limited perspective that has been seriously colored by their own life experiences. What determines the definition of success ? Definitely not the world at large.

    But then, I am brain damaged. What do I know ? I can accomplish just about anything I try to do within the limitations of a dysfunctional memory and dysfunctional visual and auditory processing system. If I do not need to drive in congested traffic or try to think in a chaotic environment, I am very capable. Give me access to the appropriate environment and I can figure out what I need to do. I just may need a calculator rather than use my previously sharp mind to do calculations. I may need pencil and paper to digest an idea rather than do it mentally. I have tried to push through stubbornly expecting my brain to still work as it did in the past. Sometimes, it does. other times, it crashes and I am worse off because I did not have a backup of my processes.

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  4. Thanks for writing Mark. You make some excellent points. The glass is generally too big for most people, I think, but we’re conditioned to DO IT ALL, at the risk of “losing face”. And then there’s the utter terror that can come over folks if they slow down long enough to hear themselves think.

    I have to say, I really do think this job of the last three years has fried me, and really set me back in some significant ways. It’s all the multi-tasking and the constant interruption and half-assed quick-and-dirty way of working that never lets me (or anyone else at the company) actually finish anything 100%.

    I will be glad to move on. I’ve been in many frenetic situations before, but this has to be the worst of them all. The first year, it was interesting and challenging, then it just became a pain in the ass, and now it’s just something to endure.

    But enough about me. It’s true what you say about stress and how people interpret their impact in the world. We often have no clue how we impact others, whether for good or for ill.

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