After #TBI – How DO you get your Sense-Of-Self back?

Let's find out what's inside
Let’s find out what’s inside

This is really a much bigger — and more important — question for TBI / concussion survivors. Yes, it’s traumatic to lose yourself, to lose your sense of who you are and where you fit in the world. But let’s be honest – our selves are always under construction. And we’re always working at re-creating our lost equilibrium, as we experience the losses of those we love, the changes that come with life, the ups and downs and roller-coaster rides which mark the passing of the years.

Life is always about loss. And gain. And change. One of the problems after TBI, is that you can become very rigid and get locked into thinking that You Have To Be A Certain Way. Or that Life Used To Be So Much Better Before. Of course, that’s not always true – our memories for how great things used to be, tend to get embellished, and we can become very inflexible in our thinking about how we are or aren’t or should/shouldn’t be.

That rigidity, in fact, is one of the biggest problems that dogged me the most. And only by talking with someone on a regular basis about what was really going on in my world, was I able to shake that habit and think outside the comfortable box my brain tried to build around itself. I had a very fixed idea about who I was and how I was in the world — and how I used to be — and it took years of discussion to get me to let go of my artificial mental inventions that made me feel more lost than I needed to.

So, yeah – we can feel lost and alone and confused.

But it’s not always that case that we ARE lost and alone and confused.

Are you confused yet? Stay with me…

The antidote I found to this was something quite simple — and common-sense for me. The fix I needed was ROUTINE. By setting a structure for myself, day after day, and following it to a “T”, I was able to become re-accustomed to the experience of being me, living my life.

The thing I had lost was a sense of continuity, of predictability. I didn’t recognize myself, in part because the customary ways I responded to the world around me had changed. I was too unpredictable for my own self. I was too volatile, too flaky, too flighty. And I never knew what my head was going to do next, or how my body was going to feel, one day to the next.

Getting into a routine, where I could reliably predict (pretty much) how my day was going to flow, let me get used to the feeling of that new routine. It let me get used to the feeling of the new me. By stepping through the same motions, each morning, noon, and night, I was able to build up a “knowing” of how my whole system worked, responded, and reacted to my daily life. And when things turned out different than expected, the routine I followed took the pressure off my brain. I didn’t have to figure everything out, all over again. I had my steps, and I followed them. And that freed me up to sort through the surprises of each day.

Because I was confident that I could properly structure my life in expected ways, and I could carry through, each day, with my normal activities.

Personally, I don’t much care for the term “new normal” — that’s probably because I don’t think I’ve ever had a “normal”. I’m different from most folks in that way, perhaps because of all the issues I’ve had over the years. But for me, the concept is useful, and it often gives hope to folks who feel very abnormal, by promising that there can be a “normal” again. It will be new, but it will be there.

In the end, it’s all a process, and it’s one you have to keep at. It’s important to take breaks, now and then, to let your system rest. But it’s also important to keep going, keep practicing, keep rehabbing your reality, until you get to a space where you have some peace. You need relief from the stress, you need hope in the story. And taking time out to let your brain catch up with your mind is an important part of every TBI recovery.

The point is — it can be done. For years and years, it was believed that brain injury meant you’d never fully recover. I take issue with that — in large part because the official definition of “recovery” itself can be literal and rigid. Of course, you’ll never go back to being the same person you were before the accident. We never go back to being the exact same person we were, after any major life change — and TBI can be a major life change, even if it’s just a “mild” one.  But that’s not a tragedy. At least, it doesn’t need to be one. You can recover tons of new and interesting things about yourself, that you never knew or experienced before. You can recover many of your interests and activities — and discover new ones you never knew were there.  Life isn’t this simple cookie-cutter experience, where your highest achievement is to become a cliche. Far from  it. Life is messy. And the sooner you learn to surf the waves of that messiness, the better off you’ll be.

How DO we surf those waves? Everybody does it differently, and I do it with routine. I have my morning routine mapped out each day, and I rarely deviate from it (I will now and then, to keep myself sharp, but I stick with the program, most of the time). I have my steps set. At the start, I wrote them all out in painstaking detail, with a checklist I filled out each morning. Then I graduated from the list, when it felt too restrictive, but still keeping my routine in place.

My routine became my refuge, my reassurance. It gave me a sense of structure and predictability at the start of each day. And it helped me get to know myself in a whole new way. That daily practice was a life-saver. And it helped me get my Sense-Of-Self back.

Many days, I look around me, and I don’t feel like things are familiar. Sometimes I’ll be driving down the road, and I’ll have no idea where I am, or where I’m supposed to be going. But I keep driving. I don’t lose my cool, I don’t get flustered. I keep driving. Because I trust that eventually I will recognize where I am, and things will become clear again.

And they do.

Many days, I “check in” with myself, and I feel like a stranger in a strange land. I don’t understand what people are saying to me, or I can’t hear them properly because of the ringing in my ears. But you know what? That feeling has become so familiar to me, after all these years, that now it’s an expected and predictable part of my life. And I know what to do about it. Again, I just calm myself down with some conscious breathing, I ask people to repeat themselves, and I repeat back to them what I think they said, for clarification. And that works for me. It not only calms down my system, but it also engages me more deeply with the world around me.

And since I have long believed (and now have scientific evidence) that the world around me is part-and-parcel of my neurocognitive process, that actually furthers my own cognition in ways that never happened before. They couldn’t happen before, because I was so locked away behind my wall of confusion — which I had built up to protect the sense of myself that I once had.

Sometimes it’s good to give your self an overhaul.

Sometimes the healthiest thing you can do for your sense of self, is to break it all down, and start from scratch.

That’s what I’ve been doing, these last years. Some people do it more quickly. For others, their process is longer. My process still continues… Like I said, some days I have no idea who I am or where I am or where I’m going (literally). But time and experience tells me… so long as I don’t give up, so long as I keep trying.


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.

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