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.