Truly Useful Tools for Brain Injury Recovery

Last night – late – my spouse and I had a heart-to-heart about our relationship. And in the course of our discussion, which was pretty difficult for me in places, it became so clear to me how hard this has really been for them. They have tried to be strong, as I have for them, but they just haven’t been up to the task. And they have had to find other outlets for relating and living their life, which do not include me.

We talked about the affair they’ve been having – they’re still maintaining that they never did everything they actually did, but that’s out of pure fear of divorce. My spouse is not self-sufficient. They never have been, and I’m not sure they ever will be. Before we met, 20-some years ago, we had been in similar straits — out of work, in hard times, struggling to find our way in the world — but they went about things completely different from me. They turned to public assistance and group housing and more social solutions, where I set out on my own — fiercely independent to the end — and made my own way in the world without asking others for a ton of help.

We’re very, very different. And it’s hard for me to not judge them for letting themself get so vulnerable. Being that vulnerable can make you say and do things you wouldn’t normally say. And that sort of vulnerability comes at a price. Truth and trust tend to fly out the window, when lies become the basis for your social fabric.

But enough about them and the whole trust thing. The bottom line is, we had a real talk, for once. And I managed to express the things that were on my mind and weighing heavily on my heart, so we can actually get somewhere.

TBI really is at the root of so many of our issues. My temper — a violent, explosive temper — that got the best of me for the first several years after my TBI in 2004… my still-to-this-day unpredictability and bluntness that alienates our friends, prevents people from coming to visit, and keeps me pretty much alone… the fatigue, this crazy, blinding, depleting fatigue… and the sensory issues that make it hard for me to function and interact interpersonally. It’s a little tough to make real contact with people, when you instinctively pull away from any contact with anyone, because, well, it hurts like hell for anyone to touch you or talk to you.

How many of our friends I’ve chased away, I cannot say. Most of “our” friends are now only my spouse’s friends. Nobody else seems to have much stomach for my intermittent and unpredictable bullshit. And certainly nobody who I deal with on a regular basis knows shit about TBI or how to interact with someone who’s dealing with long-term after-effects.

It’s a lonely business, this.

The thing is, I am quite sure I am not alone. Brain injury is confusing, whether it’s TBI, stroke, ABI… and whether the injury is “mild”, “moderate”, or “severe”. It’s frightening for people. And so the only people who really choose to deal with it are those who are closest to it — and who are impacted by it on a really severe level on a regular basis. For those of us survivors, we cannot always see what *our* issues are — in my case, I generally believe that I am totally justified in doing whatever crazy shit I do, because the rest of the world feels even crazier than I am, and I’m just trying to keep my head above water. In the case of family and friends of survivors, they can be so overwhelmed by all the problems — great and small — and so terribly unsupported by their own network of friends and family, that everything just becomes wreathed in a fog of drama and unpredictability.

And we all come up with our own coping mechanisms, most of which are not very accurate, some of which are appropriate, and others of which are really counter-productive.

Because we just don’t know. We just don’t understand what’s happening. And we can’t get access to quality care and information, in the midst of all the upheaval and drama and marketing and ignorance and bias and insurance restrictions that keep us from accessing the kind of help we really need.

It’s just so frustrating. I got lucky in my own case, because I happened to be helping out a friend who had just had a stroke, and I was researching information on brain injuries for them. They couldn’t do it themself, because they were so overwhelmed, and the more I read, the more I realized that a lot of what I was seeing applied to me as well. I hadn’t had a stroke, myself, but I could relate. And I was able to take the first (messy, confused, frustrated) steps in getting help for myself.

But if I hadn’t been in that situation to research and if I hadn’t ever had a reason to read all that information, I might never have found out what was wrong with me. And I am 100% sure that things would have gotten really bad — marriage gone, job gone, friends gone. I might have even ended up on the street, for all I know. Things were going downhill fast, so I have no doubt that could have happened. I got lucky. Not everyone is that lucky.

It’s just so frustrating. And so needless. Here we are in a world where there is information coming out our ears, it’s easier than ever to pass along meaningful information to others, and it’s easier than ever to access information — either for free or for very low cost. We’re in the midst of a knowledge revolution, and yet those who are in such need are dramatically under-served … and often don’t even know it.

It makes me crazy. So much suffering, for no good reason.

I’ve struggled and suffered a whole lot because of my multiple TBIs – from childhood through adulthood – and I know I am not alone.

So what to do?

Well, I’ve tried to help by sharing my experience. Letting people know that they are not alone is an important part of any recovery. It’s also helped me, because I can “process” my own experience and also believe that it’s helping someone else.

But I feel like something more concrete needs to be done. I need a list. Or two or three or 84. And I need to keep it simple on my side – something that people can just find and click – while accessing advanced information from professionals who are doing cutting-edge research.

What’s more, I need to make it free and easy to use. Because TBI can do a number on your ability to work and earn a living, and a lot of us need to choose between buying information and feeding and housing ourselves. So I need to take that off people’s plates and just give them what they need to be productive and have a place in the world.

A lot of people are suffering. I am certainly one of them, and I am certainly not the only person. A lot of people are struggling. No matter how far down the path of recovery I have gone, I am always coming up against some roadblock or sinkhole that I struggle with overcoming. I know I am not alone in this. Brain injury has a lasting effect. It sometimes resolves, but sometimes it never actually goes away. I am one person, and I can’t do everything. But I can do something.

So, I’m adding a “Brain Injury Recovery Tools” section to my website. And I’m going to build it out in the coming weeks and months and years. Because TBI is a bitch. All kinds of brain injury, including stroke, are a bitch. Getting good help is an almost impossible task for anyone with a brain injury and/or their partner & friends & family. We don’t even know where to begin to ask the right questions, let alone sort through all the information.

As a high-functioning long-term “survivor” of multiple mild traumatic brain injuries who knows what it’s like, I can do something about that. I’m just one person, but I can at least do something.

So, I shall.

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.

7 thoughts on “Truly Useful Tools for Brain Injury Recovery”

  1. I think one of the first tools for dealing with TBI is to serve or focus on others. When we focus on ourselves, we tend to magnify our struggles. To be bluntly honest, your intense blogging and the lack of progress from your NP sessions seem to be more of an anchor to your injury than an attempt to be free from some of those symptoms. Participating with a Brain Injury Support Group that has a group for caregivers is a big help. When family sees the struggles other families have, often with the injured person having far worse struggles, it adds perspective to daily struggles. When we as the injured see those with much more disabling injuries, we have reason to move forward.

    I have the same explosiveness problems as many TBI’s have. I can’t attend church services because I can not tolerate the sound. I struggle in groups of people because I can not tolerate the many voices. I do very little driving because I do not process the visual stimuli safely. I can not remember what I did yesterday without help. I can live a pragmatic life very well but complex planning for the future is not likely. I have lived with various symptoms of TBI since I was 10 in 1965. As I started accepting the reality of how my TBI limits my functioning, I started doing better.

    I have been able to rebuild my relationships with my 2 daughters after my outbursts messed them up. I had to be humble about my condition to do so.

    We are uniquely able to see struggles in others because we have first seen them in ourselves. We are hard on those around us when we don’t let them help us. Pride and arrogance in our own abilities and self-determination get in the way of our relationships and successes. We push our own buttons when we try to be perfect. Guess what! Those without injured brains have just as many challenges, most are just in other areas. Those of us who feel like we struggle the most are usually the most intelligent. We hold such high standards. Why can’t we modify those standards so we can be consistently successful? Hitting 85% most of the time is far better than striving to hit 95% and hit the target some of the time but also crashing hard during many of the attempts. Setting realistic goals that allow us to limit downside risk is a better plan. Being humble in relationships can be empowering to all concerned.

    I’m starting to ramble. Go ahead and critique my comments. This stuff needs to be discussed.

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  2. Hi Mark –

    Thanks for writing. You’re right – getting your mind off your own troubles and serving / focusing on others is one of the best ways to overcome TBI. Awareness of the underlying issues is important, as well. I didn’t have that awareness for many years, so most of my attempts to truly be of service went south in a hurry. I never had a medical diagnosis of TBI in my life, and I had to piece it all together after the fact, after things had gone south. So, I guess I get fixated on figuring out “what’s wrong” – because carrying on like everything was hunky-dory and not knowing how to handle things productively screwed me up and trashed my life for a long, long time.

    Blunt is good. I just got a “talking to” the other day for being too blunt with people and hurting their feelings. Sure, it can smart. But bluntness takes a lot of the guesswork out of things.

    I have to say, I agree with you to some extent about the intense blogging. Dwelling on my issues can get me in even more trouble, when just getting on with my life would do just as well to resolve things. At the same time, it helps me clear my head. Whether or not the rest of the world needs to hear about it is another question, but it’s cathartic. Part of the reason I blog, is so that others can see they’re not the only ones going through difficulties. But I probably don’t do a good enough job talking about the successes. Poor me, right? 😉 Also, I complain too much about my NP and I probably don’t give the most accurate impression of my work with them. I’ve actually come a long, long way, since I first started seeing them, and my life has literally turned around. Plus, they’re the only person I know who doesn’t laugh at me and treat me like I’m “touched” when I say and do those unpredictable things. They’re the only person I know who doesn’t make a federal case out of my sensory issues and cognitive slips, so they’re the only individual I feel 100% comfortable talking to in person. Everybody’s got to have at least one person they can talk to; it doesn’t make me happy that I have to hire someone, but it may be a segueway to other friendships. One can hope.

    I do get a little fixated on what’s “wrong”, thinking I’m going to fix it all. But I’m pretty much BS’ing myself when it comes to that. I hear what you’re saying about trimming back the expectations and learning to live with limitations. I’m getting to that point myself, these days. Frankly, I’m getting a little tired of trying to constantly adjust and modify everything in my life, in hopes of having the sort of situation where I am free of pain, I can handle all manner of noise and light, and I’m rested and ready for whatever comes across my path. Probably not gonna happen, and I’m just making things harder for myself not accepting that. I’m none too keen on the idea of hassling with this crap till the end of my born days, and it makes me crazy to think that I’m never going to be free of it, so I’m probably just deluding myself to keep my spirits up. At the same time, accepting that stuff feels like a surrender – like I’m giving up. I guess it’s a question of where I’m going to put my energy and attention. Am I going to spend all my time trying to fix things that are, frankly, broken and not gonna change much… or am I going to cut my losses and focus on other things that I can change? That serenity prayer comes to mind about accepting the things I cannot change, etc.

    Anyway, enough talk. I’m up early on a Sunday morning, and it’s time for a walk in the woods

    Thanks for writing.

    Like

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