It’s all related, no matter what the specializing experts may say. And it’s a real bitch. Even the smallest things can set that cycle in motion.
For example, TBI can screw up your sleeping patterns, which in turn can screw up your ability to think. The brain needs a lot of rest to not only repair damage but also to recover from the added load of having to work harder at certain things. And fatigue is a major factor in agitation and anger issues with TBI. Being tired can make you confused and/or make it harder to think, period. So, you end up getting turned around and lashing out at others for no apparent reason, which adds to the stress of living – both for yourself and others. Which then leads to more problems… including sleeping.
Here’s another picture:
How TBI feeds sleep issues and other problems (click the image to see a bigger version)
So no, you’re not crazy, while you’re feeling your whole life falling apart, and you feel like you’re losing the very essence of who you are… you’re caught up in a whole cycle that starts with TBI and has unidentified stresses incorporated into the whole progression. And because your injury is hidden from others, and everyone wants to believe you’ll be okay (and/or they don’t want to think about the possibility you’ve got something bigger going on with you), managing it is very difficult… and you end up pulled into the cycle of losing yourself, your sense of self, your very soul, in the process of trying to get back to some semblance of normalcy.
The BIG problem is… there are all these unresolved issues behind the scenes that are slowly but surely sucking away at your understanding of who you are and what you’re about. And as you go through each day, watching yourself do and say things that don’t seem like “you” and who you understand/need yourself to be, you feel farther and farther removed from yourself. You feel like your soul is slipping through your fingers, like sand out of a broken wicker basket. And there’s nothing you can do about it. Every day, you get up an vow to try again … and the same shit happens all over again. You’re losing it. You’re losing your spirit. You’re losing your soul. You’re losing everything that ever meant anything to you.
Or so it seems.
What’s really happening, is that you’re fashioning a new understanding and version of who you are. All the while, patterns emerge in your behavior which “inform” you about who you now are. And it’s not all good news. When you keep screwing up, it can be easy to think that, “Well, this is me now — I’m a screw-up, and that’s that.” The fact of the matter is, that can change. But we TBI folks can be quite rigid and literal in our thinking, so we may never give ourselves the chance to come up with a different idea. And we re-inforce our misunderstanding of ourselves, creating a self-fulfilling prophecy in the meantime, getting farther and farther away from our core selves, wounding our already aching souls even more in the process.
Who we think we are is not always the truth. But by God, we’re sure we’ve got it figured out. And so, we cheat ourselves of a larger truth… and everyone around us pays the price, along with us.
I say this because I know what it’s like. I’ve lived it. And in many ways, I still do live it each day. I don’t know when I’m going to learn that I am not the same person I was, ten years ago… Even five years ago (anybody who says mild traumatic brain injury is not a progressive condition, is welcome to speak to me anytime). But I still keep making assumptions about my capacity, my abilities, based on what I “knew” about myself before. Those things have changed, sometimes imperceptibly. But even the slightest deviation from what I “know” to be “true” about myself, is enough to plunge me into a crisis — and send me off the deep end.
So… to finally get to the gist of this post “Putting my soul back together, one act at a time” here’s what I’ve been doing to help myself rebuild and address the loss of my soul, my sense of self, my “center” (as some of my more alternative friends call it):
First, I get clear on what my values are and what matters to me. I identify my core values, my beliefs, my commitments, my principles. I figure out what makes me “tick” and what gives meaning and purpose to my life.
I write it all down periodically, and I remind myself what my values are all about. My neuropsych has been working with me to help me get these clear in my head. I have actually always done this (perhaps as an instinctive response to my neuro challenges over the years), but after my last fall in 2004, I pretty much stopped doing that, and I have felt the ill effects. It was really then, that I started to lose myself (though the whole story is bigger than just this one aspect).
I addition to writing my values and ideals down, I try to repeat them in my head while I go about my daily business. I think about them while I am driving to and from work. I think about them after I am done with work for the day. I really meditate on them, when I get a chance. They are my lifeline.
Some of my core values are:
Next, I take concrete action. I do things that I know are consistent with my beliefs and values. These things are not always easy to do, and I have to keep that in mind. Part of me thinks, if something is difficult, that must mean there’s something wrong with me. I’m not good enough, or I’m not capable enough. But I believe that all important things are difficult to do, so the fact that I’m challenged actually means I’m living up to my potential — and beyond. All important, complex things take time to learn, and I am learning and practicing each day.
Some of the concrete things I do are:
All these things are important to me. And all of these things help me take steps each day to getting back to where I’m comfortable in my own skin. I don’t do them perfectly each day, but they’re a priority with me, so I keep trying.
Most of all, I try to be patient with myself and give myself the benefit of the doubt. Rebuilding a life that you feel like you’ve lost is not easy going, but I try to keep focused on taking things a day at a time (sometimes an hour at a time). Sometimes I get in over my head, and I have to shovel out from under all the “compost” I’ve acquired, but I’ve gotten in the habit of telling myself that means I’m doing better. If I weren’t doing better, I wouldn’t be taking on the challenges that get me turned around, confused, and frustrated.
That’s how I do it – a little bit at a time. And with concrete steps. When I slip and fall and feel like I’m back to Square One, I check myself and make a list of all the things I have to be grateful for. And I focus objectively and realistically on the progress I have made.
The fact of the matter is, my anger isn’t constantly out of control anymore. My spouse is not afraid to be in the same room with me, anymore. I am not bouncing from job to job, leaving positions quicker than people can figure out that I’m faking my way through and I really don’t know what I’m doing. I am not spending money hand over fist without regard to my future. I am not waking up at 3 a.m. every night, unable to get back to sleep. I am not staggering around like an adrenaline-hopped-up zombie, fueled on pure agitation and nerves. I am not picking fights with police officers. I am not going for walks in the woods down deer trails during the early morning hours of deer hunting season.
I am absolutely positively getting better. Through concrete, definite steps that run contrary to the out-of-control live I once lived on a daily basis.
When it comes to getting my spirit back and healing my injured moral soul, that counts for something.