Everything changes – let’s get past the guilt

Just look around… Seasons change, the world changes, political movements rise like tides – or tsunamis – and people change.

That includes people with traumatic brain injury. When you injure your brain, whether you know it or not, something has changed. Sometimes the change is extreme and immediately noticeable, and sometimes it’s hidden and the changes emerge only after weeks or months, even years. And if that change has been gradual and practically invisible (either because the physical changes evolved over time, or the TBI survivor is not well able to detect those changes on their own), it can be incredibly daunting to understand just what those changes have been, and what you can do about it.

At times, it may seem like nothing  can be done about it. Especially if the changes are gradual and fundamental — personality changes taking place over time in ways that you can’t exactly pinpoint when/where/how it all started. Going from being an even-keeled, easygoing individual… to an anxious, agitated person with a hot temper that will come out over nothing at all just when you least expect it. Going from mellow and easygoing to uptight and raging is a pretty extreme change, and it can look like it’s impossible to ever make it back to mellow.

But things change. People change. I’ve changed an incredible amount, just in the past three years. In the past six years, actually — the first wave of change was a result of my TBI in late 2004. And the second was as a result of my rehab. The first wave of change was unexpected and constantly traumatic in large and small ways. The second wave of change was planned and hoped-for, but to be honest, I’m not sure anyone but me really expected it to happen.

Those closest to me who saw the initial extreme changes in my behavior after my fall in 2004 were deeply skeptical about my recovery. They had to live with me on a daily basis as I became increasingly erratic, agitated, and withdrawn (and a little bit dangerous, to be honest). They were the ones who had to deal with this new person I’d become for reasons they could not understand. They were the ones who bore the brunt of my erratic behavior, my temper outbursts, my hurt and rage and fear and anger and lack of impulse control. They were the ones who had to deal with me flying into a rage, throwing things, attacking them verbally, and doing things that hurt them on a much larger scale — losing my good job and not being able to hold down steady work for longer than a year or so, not managing money, not taking care of the house, not being a present and responsible family member.

All the while they couldn’t protect themselves from that, because if they said anything, I would fly into a rage with them and become even more unpredictable.

The ones who were affected like this have had the hardest time seeing the potential of my recovery. They have hoped for precious little, to be quite honest, having seen how bad I could get. They got into the habit of handling me with kid gloves, treating me like a mentally impaired loser who needed to be coddled and kept cool at all costs. They had gotten used to the routine of carefully checking me out to see how I was, and then walking around on eggshells to keep me calm and non-agitated.

The human brain is an amazing thing. It watches for patterns, it identifies recurring dangers and situations, and it reorganizes your behavior in order to minimize risk and maximize safety. And the brains of those closest to me had become reorganized around the idea that I was pretty much a lost cause who would generally give things a good effort, but would never really amount to anything, and who would — as likely as not — end up in a temper flare-out that ended badly for everyone.

You know, it’s interesting how nobody really seems to talk about mood problems and anger/temper outbursts with traumatic brain injury. At least, not while the person is alive. One of the remarkable things about reports about CTE (chronic traumatic encephalopathy – the brain disease similar to Alzheimer’s that has been found in the brains of former pro football and hockey players — as well as a student football player), is that just about everyone talks about crazy-ass mood and behavior changes taking place after the person is dead and gone. But while the person is alive, there’s nary a hint that something is amiss.

Take for example  Shane Dronett, Bob Probert, Dave Duerson, and many other players who have posthumously been diagnosed with CTE. During their downward spirals, their situations didn’t make the news. Part of that, I’m sure, is because their falls from grace — erratic, violent behavior, business failures, unemployment, ending up living in their cars, in and out of jail — are not the sort of thing that people want to think about. Especially if it’s apparent (as it often is) that their situations arose from their former jobs of keeping us entertained by sacrificing their bodies — and brains — without any regard for their own safety. There’s a guilt that is never quite articulated by society at large, not to mention the families and friends of those in trouble.

Society has a hell of a time accepting these sorts of dissolutions. And friends and family too often feel responsible, as though they’ve somehow brought the violence and outbursts and erratic behavior upon themselves.

And then there’s the guilt of those who ARE in trouble — the confusion, the frustration, the anxiety, the depression. The constant trying to make it better, followed by recurring failures. Guilt and shame. Resolutions to try again… and then abject failures that can’t be explained.

One of the worst things about TBI is how it can strip you of your dignity. And when the people around you see — and are horrified by — your descent into behavior that is so “unlike you” that shame and guilt can be well nigh impossible for anyone to get past. People look away from what makes them uncomfortable. They distance themselves from aberrations. Want to become invisible? Present as someone with a disability of some kind, and watch people avert their eyes. Like Kevin Spacey’s character in The Usual Suspects, if you exhibit some sort of behavior that makes others uncomfortable and you don’t seem to be able (or willing to) change it, you can find yourself marginalized pretty quickly.

The problem with all this is that with TBI, one of the most important elements to recovery is social interaction. Connection with others. The ability to have community and connection with others. We are social creatures. We crave connection. Our brains are social organs that grow and change and adapt, based on social interactions. And when we are pushed to the side, marginalized because of our perceived differences, it just makes matters worse. It doesn’t give us a chance to come back to a place where we can be the persons we want to be, instead of the persons the TBI ushered in. It doesn’t give us a chance to practice our “social chops” and grow and improve and change for the better. Without feedback of some kind that tells us when we’ve succeeded or fallen short, recovery stays elusive. The traits and qualities that head trauma ushered in have a way of cementing themselves in place, essentially becoming the “us” that others decide we are.

That’s probably one of the most unfair phenomena of TBI — having others make up their minds about us as being a certain way after TBI, and deciding we’re not going to change, and they need to just get used to us being a certain way. When others do this, and they decide that we’re not going to change, we can get locked inside a prison of human making. It may feel safer for the people around us, if they develop these defense and coping mechanisms, but in the long run, it just makes matters worse, because it allows no room for recovery, and it locks everyone in a pattern of behavior that is far less than it could be.

It’s true — we will probably never get back to the person we were before. But that doesn’t mean we can’t become a different person of our own choosing and our own making. When we decide things aren’t going to change, and we resign ourselves to “accept the new normal” of limited options and curtailed activities, and we stop looking for what else is possible in our lives, we are neither fair nor honest with ourselves. And when we decide that injured others are permanently disabled and need to be handled with extreme care, we are giving up and consigning them to a prison of our making.

Change happens. Change is constant. And people change as much as politics and economics and fashion. We change in relation to events, but most of all in relation to others.  We mirror others. We connect with others. We evolve with others. And even in the aftermath of events that harm and hurt and kill, we can continue to change. Grow. Improve. Worsen. Deepen. Become more complex. Become more simple. We change.

But we need to be connected somehow, in order to do that.

Brianline has a great slideshow about a young woman named Freda who sustained a traumatic brain injury in a freak accident – click here to watch it. Perhaps the most remarkable thing about it, is how Freda’s friends rallied to keep her integrated into their social life, even though she was far removed from the flow of everyday life. Her family stayed with her. Her friends didn’t ditch her. Her teachers and healthcare providers worked to educate her peers about TBI. The community came together around her. And she came back.

For me, the connections that have kept me going  have been largely virtual. Connecting with people online — just about the only place I could find others who understood what I was going through — as well as one single neuropsychologist who didn’t treat me like a drug-seeking insurance fraudster who was just trying to get over on the system. I couldn’t really connect with my friends and family, because they were — and still are — really put off by the very concept of brain injury, and a lot of them had made up their minds about me a long time ago and still remain quite dependent on that interpretation of who and what I am.

The other way I’ve managed to connect is through work — the people at work, as well as the work itself. In that controlled environment, where I actively interact with others for 8 hours a day, five days a week, doing work that refines and educates me, I find a connection and a purpose that often eludes me beyond the workplace. When I haven’t been able to stay on for very long (because my anxiety level was getting so high, I couldn’t think straight anymore), I’ve been fortunate to be able to find new work, different work, to help me along. In the workplace, where I am required to interact with others, I find connections that often don’t present themselves in the rest of my life.

One of the important differences between work and my outside social life, is that there’s no room for guilt. There’s no room for sitting around feeling self-conscious. If I’m going to do my job and be fully effective, I have to engage with others on a regular basis. I have to get over my personal crap. I have to be a part of things. Or else. There’s not a lot of room for self-pity and drama. I know plenty of people who do indulge in those things at work, but for my own purposes, I can’t afford it. I have too much to do. I have too many things on my plate, to get caught up in personal dramas. It keeps me busy and it keeps me honest, and I have to constantly improve, or I sink like a rock.

The nice thing is, others at work can see I’m actively working at this. TBI doesn’t factor in at all in our interactions, because I have never discussed my situation with anyone at work, and I never will. It’s not something that needs to be part of that equation, and the last thing I need is to have to field all sorts of ignorant biases about what brain injury does to a person. It’s enough that I do my job and I do it well. The rest of it stays to the side.

And it’s tremendously freeing. Because I’m not locked away in a box made from other people’s assumptions about me and my prospects for change and growth. I’m not living under the shadow of my wary spouse who detects agitation in me and automatically begins to act like I’m a menace. I’m not constantly trying to prove to my loved-ones that I am capable of change, and that they don’t have to give up on me.

I can be who I want to be. I can be the person I choose to be, not the person others decided I was, 5… 10… 20 years ago.

People change. TBI changes people, but we can continue to change for the rest of our lives, regardless of initial setbacks. We may never go back to being the person we were, but that’s what happens with everyone, traumatic brain injury or no. Ask anyone about the kind of person they were when they were 20 years younger, and they’ll likely tell you they’ve changed a lot since then. If they haven’t, they were either uniquely evolved in their youth, or something has stunted their growth.

It’s in our nature to change. It’s in our nature to grow. It’s in our nature to improve, should we set our minds to it. With TBI comes a host of problems and issues — many of them emerging and sticking around, weeks, months, years after the injury itself. The guilt and shame and embarrassment can be pretty intense — for everyone. When you’re “not supposed” to do/say the things you are doing/saying, it can be pretty distressing for everyone. But you can’t let the distress get in your way. You just have to keep steady, keep an open mind, and keep following through to learn and grow and change for the better.

TBI does bring change. But it needn’t be a death sentence. Mild TBI needn’t derail your life, for no apparent reason. Blast injury has its own set of unique issues, but doesn’t need to destroy your future. And concussion can be profoundly disruptive, but it needn’t isolate you from the world for good.

Stay steady, stay open to change. And find out what else is possible for you and the ones you care most about.

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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