From 2001-2010, sourced from the CDC and BIA USA
From 2001-2010, sourced from the CDC and BIA USA
Wow, I can really tell I’ve been away. My head is in a whirl, thinking about a ton of different things, not staying “on point” very well. I have a lot of chores and errands I need to do today, to get myself and my house back up to speed, but I’m scattered. And I’m not sleeping well. The trip really took a lot out of me. It’s going to take me a while to get back.
I met with my neuropsych last week, and we discussed how I’m doing and where I’m at — after my last set of test results, which came back great, they’re feeling pretty good about my situation… as far as they can tell. I did mention, however, that things have been less than rosy in a number of different areas. In the past few years, I’ve been hounded by creditors, threatened by lawyers, dragged into court several times, had a close call with a suspected cancer scare, I’ve been dissed and demoted at my job, cheated on by my spouse (who is making increasingly bad decisions in their life, I’m sorry to say), betrayed by “good” friends, had a few run-ins with police, my money is at an all-time low just as I have house repairs I need to make, I can’t sleep for shit, and I have had a ton of physical pain.
My neuropsych is actually unaware of most of this. And they got a bit upset when I mentioned dealing with lawyers over money, the other day. They asked if I was keeping things from them. It’s not that I “keep things from them” — well, maybe I do — but I just can’t deal with all the processing around such things. It’s way too overwhelming, and when I discuss things with people in person, it usually gets me even more confused and turned around, and it keeps me from being able to just handle things. I guess I’m too independent for that.
I’m also a very non-verbal person, when I’m not writing in this blog. Most of my problem-solving for Really Big Deals takes place with visuals and pictures and non-verbal / spatial conceptualizations — I have a very clear view of how I’m going to do things, step by step, and that view is spatial & logistical, not verbal. When I try to put it all into words in conversation, it’s just too confusing for me, and it blocks my progress. I can never articulate exactly what I am thinking and feeling and experiencing, and it ends up sounding lame — like I’m just complaining.
I also have a hard time discussing things while they’re happening – I need some space from them, to get my head around them and understand how I feel about them. Otherwise, I get overwhelmed, and I end up shutting down or breaking down, neither of which is helpful for me. So, when I talk about Reall Big Things, it’s usually after the fact. It’s just how I am. It’s not a trust thing. It’s logistics. So my neuropsych can quit being so sensitive and feeling left out. They just need to let me do what I need to do, and provide support and feedback only for what I want to bring up.
Yeah, my life is way more eventful than it “should” be. It’s way more eventful than I would like it to be. Oh, well.
Not that I’m complaining. On the contrary. Things are sh*tty, but I feel good. And I think that because my mood is good and my ability to function and my self-confidence have all improved vastly over the past several years – especially since I started this whole tbi recovery process – they think that things are much better than they are.
Objectively speaking, if you look at things from a certain angle, they actually suck bilgewater. A lot of people I know would be totally traumatized by the stuff that’s going on with me. And I don’t think my neuropsych has the first clue that so much is falling to pieces with me. I just haven’t talked about it much because I can’t wrap my head around it, and I’d rather just soldier through than process it and discuss. It would take 20 hours a week to sort through it all, and I just don’t have that kind of time.
But on the other hand, if you look at things differently, everything is good – excellent – very hopeful (!). I have a ton of great prospects, I’m engaged in my life, I’m learning, and I’m not thrown off by all this stuff. Not completely, anyway. I’m hangin’ in there, and things are progressing. I’m like an action figure / folk hero. At least in my mind 😉 Nothing valuable comes for free. It just doesn’t. I reckon, I’m getting what I pay for.
Plus, after a really intense bout of depression the other night, I decided to just say f*ck it all and give up … for the time being. Just quit trying to make everything turn out a different way, and pray more. Maybe start going to church again. I don’t know. I felt like sh*t, the other night, but I knew it would pass. I would get some sleep. I would wake up the next morning feeling different. I would get back into my routine. I would continue to brush up on my skills. And I’d just friggin’ let go of stuff I can’t control and seem to “handle”.
It worked, pretty much. I went to bed. I didn’t get nearly enough sleep – I’ve been waking up at 4:30 like clockwork, lately, even if I just get in bed at 11:30 – and I felt like death warmed-over yesterday. And my frame of mind was better, but not stellar. But screw it, at least I got myself up and out in to the day. And I got a lot done, actually. That “giving up” business actually helped a bit. And despite the knee-deep manure I seem to be wading through at any given point in time, I’m hopeful. I’m cheery. I’m optimistic in a blithely pessimistic sort of way. My expectations are quite low. So when things go right — as they often do — it’s a wonderful surprise and a pick-me-up.
My state of mind notwithstanding, at least I’m on my way back to my regular routine now. Nothing is perfect. My life is a work in progress. And all this brouhaha has helped me develop a high tolerance for crazy crap happening all around me, so I don’t get completely derailed by it. I have a plan for moving forward. And I’m following my plan. So, it’s good. It’s fine. Some things really truly suck in my life, but I don’t feel like talking about those things right now. I’m going to focus on the good things. And get on with my life.
I’ve just “re-discovered” Give Back, Inc., the organization/group that helps traumatic brain injury survivors get their lives back with self-therapy.
Their mission says:
GiveBack, Inc. is a recovery group for traumatic brain injury (TBI). Its purpose is not to help survivors to accept new lives that offer them limited options, but rather to help recoverers to deal with their deficits, improve their functioning, become active, and regain self-control of their lives.
I originally encountered them as Give Back Orlando, but the website has since disappeared, and it seems they’ve moved their operations to LA, as well as online. There is a Traumatic Brain Injury Support Group online that features regular postings from Dr. Larry Schutz, the founding director of this great organization.
I’ve been reading some of the articles about TBI and recovery and the different systems available to people. What I really respect about what I see, is that it’s based on many years of experience — both good and bad — and there’s still a perspective and a commitment to rehab and recovery, despite all the roadblocks in the way.
It’s safe to say that I would not be nearly as well-off as I am today, had I not come across Give Back. There was just the right amount of information for me, about just the right subjects, and I had room to move and develop my own self-therapy program based largely on what they outlined and suggested. And the changes to their suggested approach which I made to the recovery program I’ve been on didn’t negate the good their approaches offered. Obviously, everyone is different, and some of the suggestions just sounded hair-brained to me. But overall, the advice was sound, and I was under no obligation to do things exactly the way they said I should.
I’m really glad I came back to Give Back. Going along in my everyday life, it’s easy to forget about the things I need to do, to stay functional. And with the successes I’ve had, it’s easy (and tempting) to dismiss my difficulties and downplay them, thinking, “Well, I’m glad that’s over!”
But it’s not over. Brain injury is never over. The attention issues, the short-term memory issues, the fatigue and physical issues, as well as the processing speed issues may be mitigated by my coping mechanisms and compensatory techniques, but they aren’t going away. And if I don’t stay vigilant with them, they can rear their ugly heads and make my life a lot more “interesting” than need be.
The fact of the matter is, I have developed a lot of ways to deal with my issues. But if I don’t use them, I can get into trouble real quick.
So, I need to keep it green. I need to remember how close to the edge I was, when I first embarked on my recovery. I also need to remember that there ARE areas where I still have issues, and while my coping mechanisms may be great in most cases, they are not always second-nature, and I really have to work at them. I have to remember to do them.
And I have to keep in mind that when it comes to TBI, I may be a whole lot more functional now than I was three years ago, but I can easily go back to being non-functional with almost no effort at all. All I need to do is stop interacting with people when they talk to me, tell myself that I understand everything I think I do and not double-check, never write anything down, expect to keep everything in my head, and eat crappy food, drink too much coffee and soda, and stay up till all hours snacking and surfing the channels. I could also quit exercising each morning and stop paying attention to what’s going on around me. That’s a great way to go back to the way things were.
But if I keep my wits about me, stay mindful and pay attention to what’s going on, eat right and exercise each day, and I interact with the world and ask plenty of questions so I’m sure that I’m clear (even if I do feel like it makes me look stupid), I can stay on track. I just need to remember to do it.
And that’s where Give Back helps. Not only because of the forums they have there and the self-therapy materials they offer, but also because of the articles by Larry Schutz (I’ve been a fan of his work for some time, and that hasn’t changed). It’s so important for me to remind myself of where I come from, what I’m dealing with, and where I can end up, if I’m not careful.
I may move past the basic problems, and I may have my coping mechanisms in place, but if I don’t stay vigilant and keep up the level of effort required, I could end up like so many other TBI survivors — doing well initially, then slipping into long-term disability that I can never seem to shake loose.
For the last day or so, I’ve been thinking about how family members and caregivers can help TBI survivors overcome their difficulties. One of the things I rarely mention here, is that I’m not just a TBI survivor, I’m also an ABI caregiver. Someone close to me had several strokes a few years back, and since there as pretty much no one else they had — family is several states away, and their friends all pretty much disappeared after the strokes — I have ended up being their main source of support as well as rehabilitation.
I probably should have talked more about this, but my focus has been mainly on myself and traumatic brain injury, rather than stroke/acquired brain injury, and the times when I’ve sat down to write, I’ve often found it difficult to discuss what goes on with this situation (it’s been pretty intense at times). So, I tried to keep things simple and so I stuck with myself.
Now, however, I think I’m ready to start talking about what it’s been like to be in close contact with someone who has experienced a stroke (or two or three), and what it’s like to work with them to get back. It’s been a pretty amazing process, when I think about it. A TBI survivor with plenty of their own issues helping a stroke survivor get back on their feet… you don’t see that every day.
But I have to say, learning how to deal with my own issues has really helped a lot, with my work with this close friend. In fact, working with them and helping them regularly really got me thinking about my own issues. I took several months off work when they got sick, since I had some savings I could fall back on, and I couldn’t just abandon them like everyone else had. And it wasn’t until almost a year into their recovery, that it suddenly dawned on me that I was having cognitive issues, as well. It really took until after the initial crisis and trauma had faded, for my thinking to clear up well enough to see how poorly I was coping. I was coping, sure, but I felt like I could have been doing a whole lot better… and no matter how hard I tried to do better, I couldn’t seem to get my actions to match my intentions.
So, I took it upon myself to track down my TBI issues… all the while in the background, there was this underlying theme in my life about helping someone else cognitively rehabilitate and get back on their feet. I’m not sure why, but it was like there was this really pronounced divide in my life — on one half, there was my work as a caregiver and rehabber for someone else… on the other half, there was my quest for information about my own cognitive issues. And for some reason, never the twain did meet, that often. This seems to be related to the tendency I have always had, to strictly divide the different sections of my life — school/work vs. home, friends vs. family, business vs. pleasure. I know a lot of people, but most of them don’t know each other. There seems to be a part of me that needs to keep different parts of my life separate and distinct, as though I’m afraid the the blurring lines will complicate everyting and plunge me in to chaos.
Well, whatever the reason, I’ve spent about the last four years dealing with brain injury issues on a daily basis, and a fair amount of my time has been spent dealing with someone else’s issues, not just my own.
It’s interesting, where I see overlap between my issues and my friend’s. They have many of the same problems that I do, but they are a very different person than I — much more emotional, much more given to anxiety attacks and paranoia. They had several left-brain strokes that we knew about, and other portions of their lower brain area showed lesions on the MRI from events that nobody knew about. Many of their issues seem exactly opposite from mine — where I am often oblivious to danger or risk, they are acutely aware of it. Where I am often open to doing things that make no sense in light of my limitations — taking on three extra jobs, when I already know I’m overly tired, or going on expensive vacations when I can barely pay the bills I’ve got — they are closed to many, many things that I wouldn’t consider that daunting — like interacting with strangers, getting out of the house, finding a job, etc.
In fact, many of the arguments we’ve had over the past four years have been about them thinking I’m pushing them too hard or I’m too risky or daring, or I’m not being careful enough… and all the while, I’ve thought they were being over-the-top paranoid about simple everyday things.
Now, you could say that this is just personality differences, but I really believe that many of our differences have been exacerbated by our brain injuries.
For example, not long after my fall in 2004, I went for a walk in the woods with no bright colors on, during the early morning hours on one of the first days of deer hunting season (when there were clearly audible gunshots very close to where I was staying), and when people got scared about my risky behavior, I just laughed them off. I couldn’t see how much danger I was in, even though I encountered a deer hunter who had his rifle trained on me, till he realized I was not a deer. That’s the sort of thing never happened before my fall in 2004, and it doesn’t happen anymore, thankfully.
In my friend’s case, in the year or so after their strokes, they became severely agoraphobic, and extremely limited in what they would do and where they would go. They were terrified of doing anything that might exacerbate their condition, and they became compulsively fixated on what they ate and what was going on with their body. Now, I know that people who experience a severe health crisis are prone to do this, but they went about it in a way that was so slow and deliberate and careful, there was no way it was a sign of a neurologically intact person. They were very, very different from how they’d been, before the stroke.
My one regret is that I didn’t spend more time with them in the initial year or so, helping them get back on track. After a few months, I went back to work and I had less time to spend with them, so my involvement was limited to times before or after work, as my schedule allowed.
Looking back now, I realize there’s a lot I could have done. But at the same time, I was still reeling from my own TBI just two years before, and I was still pretty derailed in many ways. So I guess I did the best I could under the circumstances.
Looking at my friend now, there is a real difference between how they were in 2007 and how they are today. They are still way more deliberate and plodding in getting things done (just try getting out the door to an appointment on time), but they have regained a tremendous amount of cognitive flexibility and resources.
One of the areas where we’ve had to do a fair amount of work — and we’re still working on it — is in the area of impulsiveness. I’ve written about my own impulsiveness, but there’s their lack of impulse control, as well. It has been utterly maddening, to walk into their house and find the evidence of them starting many, many things, then obviously getting distracted and walking off to do something else. Food left out on the counters… clothing left in the washer for so long that it’s soured and has to be thrown out… wrappers and packaging lying around instead of being thrown away… the oven turned on and then forgotten about…because they got distracted checking their email.
I worry about it at times. What if they leave the stove on, and something catches fire? They’re a deep sleeper, and who knows if they’d wake up if there were a fire? They also have the smoke alarms in their house disabled, because they forget that they have something cooking and it burns, and then they have this ear-splitting shriek to contend with. Their “solution” is to remove the battery from the smoke alarm and continue to burn the toast.
I’ve discussed this with them at times — very carefully, because they get defensive and then yell and verbally attack me, and then nothing gets accomplished. I’ve called their attention to the fact that they’re forgetting things and wandering away on impulse. They sort of know it’s an issue, but I have to tread lightly because they’re so defensive and self-conscious about it.
What to do?
Well, I have been taking clues from my own neuropsych and I’ve been taking a more cognitive approach. That is, I’ve been trying to engage them in thinking things through ahead of time, getting clear on what it is they set out to do when they walked into the kitchen or sat down at the computer. I’ve been discussing what kind of life they want to live, what goals they have, what they want to do do with their time. I’ve been trying to phrase it in positive ways, finding the good in what they’re doing and looking for the rewards or payoffs in doing things a certain way.
It seems to be working somewhat. Originally, I was taking a more “behaviorist” approach, where I was focusing on rewards/punishments, doing a lot of criticizing and brow-beating. Clearly, that got nowhere and it was largely due to my concern for their safety. Once I got real about how it was my own worry that was turning me into a royal pain in the ass, I backed off and started focusing on the positives — what did they want to do with their life? How had the good things they’d done for themself helped them live their life better? How had they taken good care? And where they’d fallen short, how could they do things differently next time, so that they had a better result?
Their impulsiveness seems to have subsided somewhat. I think that just the lower levels of anxiety (probably thanks to me not showing up after work in the evening ready to take them to task for everything they did wrong during the day), and the focus on solutions rather than problems… as well as getting in the habit of thinking and talking things through in advance, has helped. Their impulsiveness seems directly related to their anxiety level — as it is with me — so the more we reduce the anxiety through positive reinforcement, good food and adequate rest, and just quality human contact, the better they do. And the better I feel.
It also helps to laugh. I found out about this video a while back, and I showed it to them one night after work.
We both had a good laugh, and now whenever we see unchecked impulsiveness rearing its ugly head, we say “I need to wash my car!” in a really bad British accent.
Humor really helps, actually. Having a good laugh takes the pressure off, and it also reduces the anxiety that feeds the impulsiveness — which is basically an unchecked need to relieve the pressure of daily life. The more relaxed and easy-going I am, in fact, the better they do, and the better I do. Sometimes it’s a real struggle to keep cool in the face of their impulsiveness. They have always been prone to “embellish” the truth when they talk with other people — saying they’ve got 20 things to do, instead of 10, saying that they participated in some activity, when they were really just standing on the sidelines — but since their strokes, they’ve been even more loose in their interpretations of what’s real and what’s not. It’s awkward, when they’re going on about something, and everyone knows they’re lying — everyone except them, that is.
I try to be understanding and not over-react. It seems hopeless, at times, looking at their finances and trying to help them think about how they spend their money. I, myself, got into a huge jam, and I don’t want them to do the same. But I also can’t let my anxiety get in the way of the message “Well, don’t beat yourself up – just try again,”
I also try to relate to my own experiences, for clues about what might be going on with them. The more I think about it, the more I believe that confabulation may come into it — that tendency to get mixed up and say things that aren’t true, without realizing they aren’t accurate. We’ve had discussions about the “stories” they tell, and they’ve told me at the time that they don’t realize they’re not telling the truth. It seems true to them, they’ve said. So, maybe there’s something to that — confabulation. Or at the very least some impulse control issues, where they just blurt out what comes to mind.
Anyway, whether it’s impulse spending or blurting out half-truths, impulse control has not been a strong point for my friend. They were impulsive to begin with, but after the strokes… trouble. Now, we have discussed different ways to adapt – they’ve started paying for impulse buys with cash instead of their debit card, so they can see how much money they’re spending. One month, they spent over $75 on coffee and donuts and another hundred dollars or so on fast food, when they were having trouble paying their phone bill. They didn’t realize the impact, however, until I sat down and went through their monthly bank statement and tallied everything up and showed them. Then they got it — and they started using cash more often.
They still have improvements to make, but don’t we all?
The main things that help in dealing with their impulsiveness are:
The bottom line really is, I need to keep in mind that this friend of mine has suffered a terrible blow in the past, and they are working their way back. I sometimes forget, considering how well they are doing now, that they were ever as impaired as they were. But they were. There are still underlying issues that need to be addressed, so it’s really an ongoing process of coming back.
The important thing is, they are coming back. And it’s hugely gratifying for me to know I played an important role in that recovery. That, alone, keeps me coming back to keep our friendship — and their health — going.
I had some feedback from one of my posts yesterday about Bob Woodruff’s recovery from TBI.
I didn’t like the article at all – in fact I felt it did a HUGE disservice to brain injury and rehab – it gave the impression that there were these wonderful cognitive programs that could restore people to their regular functioning in a relative reasonable period of time, that these services could be tailored to everyone’s particular needs, and that so much has changed that brain injury is ‘curable’.
The is little funding still for most services, most insurance plans cover very little especially in cog rehab – which may be needed for years to be helpful.
Recovery of any kind is YEARS – not months, not a year or two but YEARS.
There are no miracle programs – this is slogging through a lot of really frustrating activity, going round in circles, making mistakes over and over and over, training yourself to be disciplined about organization, planning, memory skills, rethinking your life career etc
While I appreciate the Woodruffs bringing attention to the issue Bob Woodruff got top ranked care – the vast majority of people DO NOT receive ANYTHING like that – they may get a few months of cog rehab, some PT, and a year of neuropsychological counseling. The existing services for TBI are terrible, un-coordinated, cookie-cutter, short term, and severely underfunded. 90% of the survivors DO NOT get any thing that is customized – most do not get even half of what they need that would truly empower them and enable them to have productive lives with true quality of life
VERY little is still understood about tbi – especially mild tbi. There are probably many many people who have TBI’s and don’t recognize it as such – they are just considered ‘moody’ or easily distractible or have other issues in relationships etc. We know virtually nothing about how the brain works and organizes data, repairs itself or re-organizes after a trauma. Much much more research and money is needed to allow professionals to understand tbi, provide better tools for helping people recover (whatever that may mean), better ways to diagnose and to eliminate the stigma involved. 80% of tbi survivors do not recover their previous employment levels, and equal numbers experience loss of spouse, family and or friends, NO ONE wants to tell a prospective employer they are a survivor. Most tbi survivors do not write books or go on tours or have understanding supports – they end up financially destitute or in severely reduced circumstances, alone, struggling and often develop addictions as a result.
The article presented a rosy cheery picture of tbi – just like having a hip replacement – tbi is a life-changing event and is underfunded and not understood. there are no ideal treatments and many people end up overdrugged – even by the ‘professionals’. I get frustrated by such articles because they mislead.
Some folks in advocacy agree with me and others don’t. Some feel that any attention to TBI is helpful and that at least by making it less strange it encourages people to accept that many people do have tbi’s and are ‘normal’. So I admit that my opinion is not universal. I will also say that this was the second brain injury article by that paper that focused on a well-connected individual who got amazing health care – and in this other case that person did make a phenomenal recovery – again, the kind of recovery that 99% of tbi’s do not make. So some of my frustration is also based on that. I would love to see a “Ordinary Jane or Joe has a tbi” story – and what it means to lose your career, to lose your home, to have a changed marriage, to try and re-create a self, to have 3 months of cog rehab and told you are ‘fixed’ because your insurance ran out – to struggle in school, at work, to lose your job – all these things that are what happen to most Americans – including our Vets.
Healthcare is a critical issue in this country and tbi is part of that. It will be ignored and forgotten if the true loss of lack of care is not made clear.
You know… it’s true. The vast majority of us who sustain these types of injuries never get the help we need — many of us never even realize we need it… until too late (or almost). Personally, I consider myself extremely fortunate to have put two and two together before everything fell apart for good. I was awfully close to the edge, now that I think of it. I dodged a bullet. And I am incredibly grateful for the combination of fate, the world wide web, and my local Brain Injury Association chapter, for helping me put this together… as well as to my various therapists and friends and strangers who had the right info at the right time, who kept me from tripping and tipping over that very precipitous edge.
Not all are as lucky. And I have been lucky. I am very much aware that I could easily have ended up in much tougher straits than I am, right now. It was almost a fluke, that I even got a clue that I needed help. And while I have had to work my ever-loving ass off to get the help I need, and it feels like it’s been a long time coming, and I still have a long way to go, at least I have had the personal resources to launch into this quest for clues.
A lot of others don’t. They just get lost. Pushed to the margins. Out of sight, out of mind, out of luck.
I hate to say it (and I’ve felt a bit guilty about thinking this), but I’ve never been that comfortable with Bob Woodruff’s story and the way he’s been portrayed as a kind of “poster child” for TBI recovery. It’s like they’re not telling us the whole story — like how he really is at home, what his moods are like, what his interpersonal skills are like, what his memory is like. He’s an attractive public mainstream figure, who has received the best treatment possible and works in a field where his performance is not only scripted beforehand, but edited between the time he does it and when it is aired to the rest of the world.
I’m reluctant to say any more about him, because I am not thoroughly familiar with his work, and what I’ve seen of him has been positive. No-way, no-how do I begrudge the man his recovery or his restoration to broadcasting work. He’s covering some really important stories that I enjoy watching. But I wonder how much similarity his experience actually bears to my reality. Or to the reality of countless other tbi folks. I wonder how his irritability/anger management is, if he has constant ringing in his ears or constant headaches or other chronic pains. I wonder what truly goes on in the privacy of his own home, where no cameras are rolling and no editors are deleting the segments where he’s struggling to find the right word or remember what he was going to do when he walked into the next room. I wonder what his life is really like.
One of the things that I think may have helped him get back to work, is the fact that he works in broadcasting. Being involved in broadcasting, myself, I know how helpful it is to have a script to go by, when you’re doing your job. I often create and use “scripts” in other situations, like when I go on job interviews, or I am leading a meeting and following an agenda very closely. Having a scripted line of work (or work that follows specific guidelines, like strict meeting agendas, or has a heavily-project-managed element to it) makes getting back to work — and re-integrating into society post-injury — a lot more straightforward, in my mind.
It’s never easy, of course, but if you know what you’re going to say and do ahead of time, and you have ample opportunity to practice, and you don’t have to be “on” for more than the length of the take/recording… and you get to edit out the parts of your performance which aren’t that flattering… well, I can see how you could present a really excellent picture of miraculously restored health after what was supposed to be a fatal accident that would — at best — leave you a vegetable.
Thinking back to the positive tbi-is-fixable article in Parade, I’m struck by the emphasis on the idea that outside therapies are capable of restoring functionality post-tbi. I don’t doubt that having someone work with you can be of tremendous help, but from what I’ve seen and experienced, what you do for yourself, with yourself, by yourself, can be a critical factor in the degree of your success. Of course, it is important to get outside help — especially from trained professionals who have made the study and treatment of tbi their life’s work. But I also agree with the Give Back Orlando materials about outside therapy only going so far — at some point, the insurance gives out or the prescribed treatment runs is course, or therapy is no longer available or an option for you. You then have to step in and run things for yourself, or you’re just not going to get that far. Reading about long-term efffects of TBI, what I’m struck by is that folks may improve over the first several years post-injury… but look at them 10-20 years later, and sometimes they’re really struggling. I think the critical piece in this is self-reliance and the ability to do self-therapy.
Personally, I suspect that my own self-reliance has been the secret to my repeated recoveries over the years — never having any help, and being forced to fend for myself. Not that I had any choice, mind you. My first injury was 36 years ago, and nobody had a friggin’ clue about mild tbi, back then. A year after that, when I had another more significant injury, it was worse, but not bad enough to send me to the hospital, and they probably would have just sent me home again, anyway. I’ve been hit on the head, fallen down stairs, fallen out of a tree, been hit from behind in several different cars, and I’ve had my bell rung more than once while playing contact sports, over the past 36 years. If anyone should be marginally functional and struggling in vain with basic stuff, it would be me.
But I’m not. I do struggle terribly at times, and I do have some pretty problematic issues, but I usually manage to figure a way out of my predicament… eventually. I’m not destitute, and all my friends and family haven’t fled from me. I am not homeless, I am not out of work, I am not that terribly marginal — except to the degree I pull myself out of the mainstream frenzy to keep my balance and sanity. Best of all, I am not in jail (granted, I dodged the bullet of arrest a bunch of times, but hey – at least I dodged it, right?) Given just slightly different reactions and choices in many of my life experiences, I could easily have ended up in an institution of one kind or another. My own parents tried to get me committed due to my “inexplicable” behavior, about 20 years ago. It didn’t work, I’m happy to report.
Maybe I’m just too stubborn and too averse to acting/living/thinking like someone who’s brain-damaged. Maybe I’m too proud to give in. Maybe I like having a regular life too danged much to let go. Whatever the reason, I’ve been self-reliant and headstrong and stubborn from the start, and I credit my tenacity and determination to just keep going, regardless of whatever the heck life throws at me, with keeping me in the game.
Now, I wouldn’t recommend following my tumultous loner’s path to anyone — tho’ a lot of us are in this “boat”. It’s lonely and confusing and confounding and can drive you half mad. It can also really piss off everyone around you and cost you jobs and friends and family, and you have to work twice as hard after the fact to fix things up again. But at the same time, a lonely, isolated path forces you to develop a self-sufficiency and skills that you might not have to, if someone else were standing by your side, walking you through everything, checking in with you regularly, and keeping you on track.
It’s kind of like that “restraint” training that some stroke survivors do — to train the hand/arm/fingers on their impaired side to function again, they tie down the arm on their able side, so they’re forced to use the impaired side. And they can progress at rates quicker than those who don’t use this technique. I’m not sure if I even have a lot of “un-hurt” parts of myself to tie down. I’ve been pretty roughed up, over the years. But I’ve forced the broken parts of me to keep going, regardless, and it’s paid off.
That being said, what I think helps me the most as a long-term multiple mild tbi survivor who is not just surviving, but thriving, is:
I wish to high heaven there were head-injury-aware neurologists who were freely available to chat with the tbi survivor population — maybe I’ll check with my local BIA chapter to see if they know of any — because I’d love to be able to ask them a bunch of questions about brain function (particularly mine) without needing to clear it with my insurance company. I need information. I thrive on it. Even if I don’t understand every little bit of it, and there are pieces that get lost along the way, still… it gives me a general orientation in how to live my life. And that helps. I need information to save my life. Literally.
That’s what it really boils down to, I guess — not so much about saving my brain, as saving my life. Sure, of course, I want to save my brain, but there is much more to me than what’s between my ears. There’s what’s in my heart — and in my gut. There’s what is in my spirit, as well as the sum total of my past experiences and all the invaluable lessons that have come from that. My brain may have issues that need to be dealt with, but ultimately, there’s a whole lot more to me than just gray and white matter segmented into various lobes and cortexes (or is it “cortices?”). There’s a whole person in here, with a lot more going on than the electrical impulses and connections between synapses and neurons and dendrites and whatever else is up there (that they know about or haven’t discovered yet, which I suspect is a lot).
And I think that’s also what gets lost, a lot of times, when people deal with TBI. They are so focused on the brain, on the individual functions of the brain that need to be restored or changed or compensated for, or whatever, that they can lose sight of the rest of themselves that is so very vital in dealing with their new brain, their new personality, their new self. The old brain is gone. The old self is gone. It’s not coming back. It can be a terrible loss, and it does need to be recognized and grieved. But at some point, you’ve got to let go of the idea that things can be the way they were before. They can’t. You may be able to get back to a semblance of your former functioning, but the old ways of doing things are gone-baby-gone. It’s a tragedy. There’s no two ways around it.
But that’s not the end of the story. The good news is that for every old way that’s gone, there are lots of new ones waiting to be discovered and developed. The brain is an awfully big place (its size notwithstanding) with a wide, wide world of possibilities. The human spirit is enormous, with more capabilities than we can ever imagine. The body is also capable of incredible changes and adaptations that can compensate for plenty of problems. I’m not trying to make light of tragedy and loss, or make it out to be less serious than it is. It is serious stuff. And it is a terrible, terrible thing when it happens. But there is a whole lot more to us, than we can ever imagine.
And until we put our minds to it, we can never begin to find out just how much is in there.
So, while I do often wonder if brains can be saved, I’m ultimately much more interested in how lives can be saved. It’s not always about what’s in our heads that counts in life — it’s what’s in our hearts.