Taking on our own issues

I’ve been reading a piece in USA Today about the care that people do/do not get after TBI. For brain injuries, a treatment gap is a pretty good read, though a bit depressing at times. It’s wonderful that Congresswoman Giffords is getting thorough care, but for the other millions of TBI survivors… that’s just a distant fantasy.

It is really easy to get depressed over this and become bitterly resentful towards the government for subjecting everyone else to insurance and healthcare uncertainties, whilst they have their own special plan that is little more than a pipe dream for the rest of the country. I, for one, cannot even conceive of having that level of care available to me. I don’t rank or rate highly enough for that. As far as the government and Blue Cross Blue Shield is concerned, if I’m in need of assistance, I’m just another liability and a drain that would take away from people with real problems.  “Blue Cross, Blue Shield doesn’t run a science fair. We run a business…” says the chief medical officer of the Blue Cross and Blue Shield Association, which makes recommendations that (BCBS) member companies typically follow. And my life is anything but a double-blind controlled laboratory test. I’m not sure if I’d call it a “science fair”, but I’m definitely on the cutting edge of self-therapy for TBI (and I’m actually winning – so there). For the purposes of formal insurance coverage and consideration by the established money-holders of who-gets-t0-live, my life is a statistically unjustifiable waste of funds.

But when I think about it, I have to say I’m not entirely sure I WANT the government — or the insurance companies or formal rehab — to rehabilitate me. The people and the (official) science and the money and the resources that these institutions have may be helpful and therapeutic for many who need their help, but I hesitate to place my total faith and confidence in them. They are, after all, institutions, and their approaches — while sophisticated and scientific and whatnot — are going to be informed from an institutional point of view. So, whatever personal attention and assistance you may hope to receive from them, is going to be tailored to a scientifically established standard, which may or may not work for you. It’s a real problem, because no two brains are alike, and no two people are alike, so you have this potentially damaging disconnect between what they are offering (and they tell you that you need or should need) and what is truly helpful to you. Plus, with their established standards of care, the folks working for them may be pretty much prohibited from exploring alternative therapies which may work wonders for TBI survivors.

Let’s get honest, people. Government isn’t going to solve our healthcare problems for us. The best that it can do is keep the greed and homicidal tendencies of fiscally driven insurance coverage decision-makers in check. Modern medicine isn’t going to improve our quality of life. It’s just going to keep us from dying from the crap that killed off our great-grandparents, and patch us up after catastrophes. The rest is up to us. If we want to live long and healthy lives, we need to act like we want to do just that — take care of ourselves, eat right, exercise, and stop doing the things that everybody knows will kill them. And we need to stop being so surprised when — after a lifetime of eating junk food, drinking to excess, subjecting our bodies to constant drama and stress, and smoking like chimneys — our bodies turn on us.

A Great Society is all very well and good, and having a government that gives a damn about whether you live or die is nice. But ultimately so much of our care (and rehab) issues come down to personal responsibility. Shared responsibility, too.

Now, I’m sure there are those reading this who protest that traumatic brain injury survivors are not in any position to take full responsibility for their lives — to at least some extent. And I would agree in principle. I myself was so impaired after I had my last fall, that it wasn’t till my life savings was almost gone and my life was in a shambles that I reached out for help. But I do think it’s important to accept your part in shaping your own life. I did, and it didn’t kill me. I would also suggest that when it comes to recovering from brain injury, it’s not just the survivor who needs to cowboy up, but the family and friends, as well.

I’ll spare you my rant about how I feel our society has become far too permissive and accommodating and personalized — to the point where nobody knows what we stand for and nobody seems to get the difference between right and wrong. The thing is, we need to re-learn what family is all about. We need to re-learn what community is all about. We need to stop being so isolated from each other, come together, and support one another in making the kinds of decisions and taking the kinds of actions that enable a person to live a productive and healthy life. We need to start sharing responsibility for each other’s health and well-being. We need to start TAKING responsibility for our own actions.

Even after TBI — especially after TBI — we need to strengthen our grasp on the concepts of cause and effect and get a clue about consequences — AND learn to choose the kinds of actions that will produce the results we want.

Which requires that we stop and think. Not just race from one distraction to the next. It requires that we overcome our impulsiveness — that’s both TBI-related and general socially encouraged — and learn to pause and examine what it is we are doing, and why, and what we hope to achieve. That deepened involvement in our own lives, the honest and courageous examination of what it is that we are doing and how it is affecting others — to my mind, it’s a sign of maturity. And we all need to grow up, at least a little (myself included).

I think there’s a real danger of falling for the false promises that the government will (or even can) help and preserve us in the face of danger. And persisting in the illusion that insurance companies are there to help you when you’re in need of assistance, is bound to disappoint, sooner or later. Insurance — and the government — exist for their own purposes: to survive. And the minute it stops being in their own best interests to allow you to live, you can expect to be cut out.

I’m not (entirely) bitter. This is just what I’ve seen – the cold, hard truth of what these institutions are all about.

And that leaves many, many of us out in the cold. Those of us who are lucky can get help. Those of us too busy (and not obsessed enough) or not living in the right place to find competent rehab help, fall by the wayside. We’re on our own. As are our friends and family members and coworkers. We end up trashing our families, destroying our finances, losing our businesses, living out of our cars (if we can even keep our cars), and eventually ending up on the street or in a nursing home somewhere. Not a pretty prospect, by any stretch. We DON’T end up like Rep. Giffords, surrounded by caring professionals who are at our beck and call. Those same professionals, if they passed us on the street, might very well avert their eyes and walk faster to avoid us, hoping to think of something more pleasant. We DO end up struggling. If we’re fortunate, our struggles pay off. If some weird trick of fate intervenes, they don’t.

I hate to say it, but that’s what it often boils down to — circumstance and fate.

Will broader government intervention help us? I’m not sure. I think it’s tempting to imagine that the VA is going to offer the same level of investment in injured soldiers that the armed forces offer to fully functional ones who are deployable, but I’m not sure that will ever happen. It’s nice to think that medicine is about healing and helping people live their lives, but it is after all a business, so good luck finding that level of care in the medical world. It’s tempting to imagine that one can find the same level of comaraderie and support in society at large, that you can find in fighting units… but in the personalized, customized, convenience-driven society we have built, it’s all about ME, and the rest of you can go pound sand, so I wouldn’t hold my breath on that one.

Ultimately, thinking about all this brings out my libertarian streak and makes me fall back on personal responsibility and personal empowerment type thinking. It also makes me pine for quality online resources where people can turn for reliable, non-commercially driven assistance to help TBI survivors rehabilitate themselves, educate family members about how best to help, and help people rally around each other in a supportive, common sense way. Any time you get money involved (and what is government, other than a way to collect and distribute money to the causes that further its existence?) and you put your hope and future in the hands of people far, far from you – geographically and ideologically – you’re gambling with your future.

That’s a gamble I’m not willing to take. I hate to say it — and many people might take offense at my point of view — but the government and formal medical establishment are about the LAST bunches of people I think should be answerable for our cognitive future. There’s just too much at stake, to lay it at the feet of any machine.

People are involved. People need to solve these issues. Not machines.

Ruminations of a high-fuctioning mtbi survivor

Okay, so this post is purely self-serving, in that I need to remind myself that I am indeed a high-functioning mild traumatic brain injury survivor, who has managed to build a pretty incredible life for myself and my family, despite my injuries at age 7-8 and three years ago at age 39.

I’m in the job market again, and I’m looking at my job prospecting with a whole new eye — keeping tabs on my stressors and trying to navigate the world of recruiters and headhunters, who are all so incredibly DRIVEN and don’t give themselves, let alone me, a chance to breathe. Take a deep breath, folks. Honestly…

I’ve been talking to headhunters, on and off, for a few days, and they’re starting to make me crazy. All that go-go-go stuff and the constant pressure to schedule something with them… to make it happen… make it happen! Can-do shit and all that. I have to admit, I’m a bit tired of all that pushy crap, and it’s making me antsy and short-tempered. I actually snapped at a headhunter today who was just pushing too hard. People can’t push me hard, anymore. Not anymore. No thanks. Give it a break.

Still, one must work, one must earn money, one must pay the bills… If only I could find a job I could do from home, instead of going out into the world. I’ve been thinking I really need to work for a company that can offer me structure and reliability and some sort of regular schedule. I’ve been in and out of the regular job scene for a while, back and forth to a part-time job and futzing around for the past year or so. I’ve been thinking that I need more than that — more structure, more involvement…

But the more I talk to people in the working world, especially recruiters for technology companies, the more it gives me the willies. And I don’t relish the idea of going back to a 9-to-5 position. Especially if it involves driving an hour each way. Just too much.

Especially since I’m starting into dealing with this TBI stuff. I really don’t want to have to put my diagnostic testing and rehab on the back burner, while I try to figure things out. I don’t have an unlimited amount of money in the bank, so something must be done. But really, I’d prefer to work at home… telecommute. Work remotely. Not have to go into an office.

Better yet, I’d prefer not to have to work at all.

But that’s not really in the cards, at this point. Unless people buy so many of my headache journals that I can retire. Or they purchase more of my writing/research/resource guides. That’s always a possibility. A slim and distant one, but a possibility, no less.

But seriously, folks, there must be a better way for tbi survivors to make a living, than having to schlep into an office and be surrounded by people who neither understand nor care about your condition. I’ve worked with disabled people before, and while our employer did accommodate them, and they were great friends with everyone they worked with, the simple fact is, they had to work like the dickens just to get by “normally.” And while people did help and reach out to them, there was always that undercurrent of pity that makes my skin crawl.

I just can’t bring myself to “play the disabled card” as a tbi survivor. I’m still up in the air about whether I’d even mention it to an employer. I certainly will not mention it to consulting clients. That would totally work against me, I believe.

I just need to keep it to myself, unless there’s an expressed need to let people know what’s going on. I guess it’s all in a day’s work for a tbi survivor… trying to figure out how to navigate the working world. Or the world in general.

But I don’t think I started this post to bitch and moan about my job situation… where was I? Oh, yes, now I remember: ruminations of a high-functioning mtbi survivor. That means I’m supposed to focus on my strengths, I suppose 😉

The oddly conflicting fact of the matter is, being a high-functioning tbi person can make things all the more difficult, because if you don’t “present” like a tbi person (like me), it can be pretty difficult to get people to take your limitations seriously. I’m having a getting-to-know-you meeting with a counselor who’s seeing a friend of mine, who’s really struggling with my newly discovered tbi status. This counselor knows a bit about tbi, and they don’t think I look or act like a tbi survivor, whatever that may be like. So, I need to sit down and explain things and hopefully elucidate my situation.

I’ve invested a whole lot of time and energy in making sure that nobody, but nobody, realizes I’ve got a disability, and now I have to sit down and explain to someone how my front is often just a front, which makes me a fraud and a fake, I suppose, on a certain level. I’m not nearly as smart as I pretend to be. Or as quick. Or as inspired. I just do a great job of imitating someone who is. Or maybe that makes me a highly resourceful survivor extraordinaire, who just doesn’t want to miss out on life and sucks at self-assessment, so they can’t see that they’re not quite as smart/quick/inspired as they think they are.

It’s all very confusing, and I’m not helping myself any, right now. I’m actually very tired. And stressed. And worried about these interviews I have coming up over the next few days.

Just remember, on the internet, nobody knows you’re a dog…

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When they think your TBI is PTSD

I just checked my blog stats, and somebody came over to this site while Googling for info on soldiers and PTSD.

I want to quickly put in a word for military folks who are seeking help for post-combat/deployment issues, who may be headed down the PTSD treatment road, but may miss TBI treatment in the process.

I started professional counseling about six months ago for “coping issues” that I couldn’t get my head around. Everything in life had just gotten so difficult, and I couldn’t understand why I kept running into dead ends with jobs and relationships and why I couldn’t seem to advance in life. All my peers have “moved on” and “grown up” — many of them now with grandkids and advanced careers, long-term homeownership, and all the accoutrements of adult life… while I languished in a no-man’s-land of false starts, scattered ideas, and a long line of failed or aborted attempts at living a normal life.

Now, don’t get me wrong — on the surface, my life looks like it’s highly advanced. I’ve got a great home, a wonderful marriage, and two cars in the garage. My resume looks fabulous, and I’ve got a lot of respect from folks. But my external circumstances don’t match my internal state… and they haven’t for a long time. Nobody really knows just how deep the self-doubt, anxiety, self-criticism, abysmally low self-esteem, and constant invisible struggle really goes.

Except me. And I don’t breathe a word of it to anyone. Not if I can help it.

So, when my health and career and personal life all started to tank in a very big way, this past year, I sought professional help. The counselor I found is highly experienced, compassionate, insightful, kind, caring, and very adept at what they do. But I found myself over time feeling as though they were looking for some sort of horrific trauma in my past that would cause me to lose big chunks of my memory, be uncertain around people, and erode my emotional and behavioral (and cognitive) foundation.

I got the distinct impression they were looking for emotional trauma. Abuse. Neglect. Some sort of terrible thing(s) others did/do to me that cause me to have PTSD. Or some life-threatening event that brought on PTSD.

We had talked about post-traumatic stress a good deal, and both of us accepted that it could have a part in my difficulties. But no matter how closely I looked at my life, I couldn’t for the life of me find THE Event(s) that had wrecked me for “normal” life.

It just didn’t make any sense to me. And when I dug deep and did my own research and realized that sustaining a traumatic brain injury at the age of 8 (and possibly other times), as well as another TBI three years ago, did actually fill in a huge, gaping missing piece of the puzzle.

It’s not that my counselor was incapable or incompetent. They were just looking for the wrong thing in the wrong place. They’re a wonderful resource for me, and I really value their input, but in the case of TBI, I had to come up with my own diagnosis.

This article was very helpful:

Concerns grow about war veterans’ misdiagnoses – Brain injuries can defy easy detection” – I passed it along to my counselor, and they found it very helpful… as well as a bit disconcerting.

And the blog “A Soldier’s Mind” has some more info.

If you’re in the same boat I am/was, you may need to do your own research & preliminary diagnosis, too. After all, TBI tends to make it very difficult for people to tell what’s going on inside our heads — and it can make it tough for us to figure that out, too. Doing research online is a great way to make a start.

I’m finding that TBI is not particularly well-known in the psychotherapeutic community — I have a bunch of friends and associates who are therapists, and when I’ve talked about TBI, I’ve gotten blank stares. That’s not entirely their fault. They aren’t always trained to look for physical ailments, which are the domain of medical doctors. If anything, they’re taught to look away, in terms of medical issues — liability issues, I suppose. Unfortunately, there seem to be a lot of highly trained individuals who simply don’t have the kind of physiological orientation that treats cognitive-behavioral symptoms as possible neuro-physiological phenomena. They are accustomed to looking at emotionally traumatic life experiences as the root of PTSD problems. They’re looking for the right thing… but they’re looking in the wrong place.

I really want to devote a fair amount of time and energy on this site to explaining to psychotherapeutic professionals the personal realities of living with TBI, as it relates to trauma. There are different aspects of the condition that both mask post-traumatic stress and exacerbate it. TBI adds another wrinkle to the whole scene that complicates matters and requires greater sensitivity to our situation.

When I informed my counselor about my TBI, they seemed a bit concerned that I wouldn’t need their help anymore… or that I’d terminate my sessions with them. They seemed to think that TBI work would replace the cognitive-behavioral work I was doing with them. But in fact, the TBI aspect makes it even more important to do cognitive-behavioral counseling. It doesn’t make counselors superfluous. If anything, it makes them all the more essential.

Other posts about PTSD:

Better today… of pain and ptsd

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Great post about a soldier returning with PTSD/TBI

Main and Central has a great post about Healing Soldiers at Home. I tried to post a comment, but I got an error, so here’s my response:

Thanks so much for this excellent post! It brings together some great into that people really need to know. I’m a long-term (35 of my 43 years) traumatic brain injury (TBI) survivor, who never received assistance or help (or even acknowledgement) of my condition. I was head-injured when I was 8 years old, and when people didn’t see any immediate physical problems, they just assumed things would work themselves out. Well, they didn’t. I had to work them out, myself. That’s the bad news — years and years of isolation, confusion, false-starts, problems with peers and teachers and parents and family… problems at every turn, with no explanation of what was going on with me. Growing up with a TBI taught me a lot — most of it thanks to the school of hard knocks.

But I have to say, there has been light at the end of the tunnel. Recovery from and successful living with a TBI is possible! I’m living proof! I’ve been through the darkest of valleys, and today I’m in a stable marriage of 17 years, I have a long and productive career history with some of the top businesses in the world, I have a satisfying social life, a healthy emotional balance, and peace of mind. All this, despite living on the margins and having tremendous difficulties over the years with this TBI.

In spite of all the difficulties (perhaps because of them), I have learned to live successfully on my own terms, drawing on my own resources and making sure my own needs are met. If I had depended on folks around me to help me out, I don’t think they could have done nearly as good a job as I’ve done. That’s one of the problems with TBI — it impacts the very part of you that you depend on to identify your needs and communicate them to others.

Even though the VA and the current administration are NOT living up to their responsibilities, there is hope. Each person can find their own way to health and balance… so long as they’re not locked away in a prison of ignorance and fear. TBI survivors are all too often on their own, but it doesn’t need to be the end of the story. Each and every one of us can live up to our true potential, even in the face of limitations. Even in the face of government neglect, PTSD, and brain injury!
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TBI & Polytrauma Single-Topic Issue in JRRD

The US Dept of Veterans Affairs has some great information at http://www.rehab.research.va.gov/jour/07/44/7/contents.html

Here’s hoping that folks suffering from TBI will be better served — especially our veterans.