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.
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.
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.