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.

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.

5 thoughts on “Taking on our own issues”

  1. My company has very good benefits according to my supervisor. They say that insurance companies do not like to give the level of coverage where if something were to happen that everything would be taken care of but they work out a deal. It is part of the philosophy of my company to take care of people like that. I can’t say who I work for as we sign things not to talk about the company online. I am so grateful to work from home and have benefits.

    I do not have all of the answers. People say how bad Canada is with socialized healthcare and yet my aunt only had to pay $8 for cancer treatment from what I heard.

    I do believe the statement of my distant relative Ted Kennedy who used to say that a person’s wealth should not determine a person’s health.

    My parents are big believers in the need for healthcare reform and also believe in government healthcare.

    I do feel like health care should be a basic human right. I just don’t know how best to allow the Masses to have the healthcare that they deserve.


  2. Hi BB,

    Well, being Canadian and having been in Canada for all of my injuries, I can say it’s a mixed bag – but I’d still prefer it – infinitely prefer it – to what I’ve seen of the health care system down here, which seems sort of insane. Actually, completely insane.

    I had my last injury almost eleven years ago, when knowledge of head injuries was not as prominent as now. I saw a neurologist after the fact who was negligent, very old school and didn’t help at all. I WAS referred to a very good clinic by a friend some nine months after the fact, which turned out to be very helpful – and probably made a very big difference in my life. Basically, they showed me what was wrong, and why, that I wasn’t going insane which was how I felt at the time. I have often wondered how the two systems compare in terms of head injury treatment though.

    I would say the chief advantage of a socialized system like Canada’s is that it removes the intense anxiety that revolves around health care here – or rather focuses that anxiety on the malady itself (maybe that isn’t a good thing!). And the usurious premiums. And, theoretically at least, all are equal, from the Prime Minister to the homeless guy on the street. As one commentator said after John Beohner said America has the greatest health care system in the world – that’s absolutely true. If you’re John Beohner. I will say however, that there is much greater head injury awareness down here, both in the media and it seems, the general public. I guess the Iraq war and football injuries have a lot to do with it. Canada is only just starting to come to terms with concussions from hockey and I’m still frustrated when I go back at the lack of understanding from friends and relatives. That exists here as well, but there seems to be at least an acceptance that head injuries are not just some delusion. The blogs and support groups in the US have really been a lifesaver.

    But ultimately you are on your own. The health industry in the West is rotten with drugs, and myopic thinking. I don’t know if you read this article in the morning’s NYTimes:


    Amazing – 15 minute visit to potentially life-changing drug diagnosis. When I read stories like this, I think maybe you are better off on your own, socialized medicine or not.



  3. Hey T –

    Thanks for the link – chilling stuff, that.

    I agree that socialized medicine has its benefits. I lived in Europe for a few years in the mid-1980s, and when I was there, I had a surgical procedure done that was just taken care of by my coverage — which cost me about $300/year (yes, a YEAR, not a month). Of course, I was a student at the time, but cost aside, the process was amazingly simple and straightforward — whatever policing of doctors took place, the patients were not involved. The US system seems to hold patients at least partly responsible for fraud situations, so if you get sick in a non-standard way, and you need more coverage, you’re instantly suspect. It’s a complicated thing, of course, but the bottom line is, when I was in Europe, I had the procedure done by an excellent provider, and the issue of paying for it all was never a problem.

    I’m not sure why the insurance and medical industries need to drag patients into their disputes, dragging us into who’s going to pay what. Seems to me, they’re just capitalizing on our helplessness to fleece their own system. Strange. But I guess that’s what you get, when you turn medicine into a business.

    My issues with who should be ultimately responsible for TBI treatment aren’t necessarily about us relieving doctors and insurance companies of responsibility — my main point is, we can’t rely on the “experts” to know exactly what to do for us, all the time. The ideal in people’s minds is that our doctors will have more knowledge than us about what’s ailing us, and be able to offer explanations as well as plausible solutions — much like people in alternative medicine do. Acupuncturists and chiropractors and massage therapists have always explained to me what was going on and involved me in my own health care. They invested more attention in me and made a point of getting to know me. I think this is why alternative medicine is taking off and people are willing to pay out of pocket for that kind of service — there is actual CARE involved, not just billing codes and a production-line mentality that is the hallmark of modern medicine.

    Ultimately, to me, it’s not so much whether or not we go to doctors, neurologists, neuropsychs, etc. It’s how we relate to them and what we expect of them. They are consultants, these days, not caregivers, and they are often so busy running their business, that the whole concept of care is lost on them — and us. It is up to us to ensure that we are getting the care we need in the way we need it. And that may involve avoiding doctors and neurologists and finding alternative therapies that really work for us.

    The level of understanding about head injury is rather appalling — everywhere, it seems. And relying on a general practitioner to have all the right information is risky at best. Especially in rural areas or outside the East Coast metropolitan region.

    In some cases, I think it’s almost better to not bother with the doctors at all. There is so much mis-information, that even if you do get medical help, the brain injury goes on your record, and you can end up getting little or no useful medical advice — AND the black mark of brain injury on your medical record.

    I’m not saying that folks who are really hurt shouldn’t seek medical help. And it could be that some help is better than none at all. But ultimately, the medical establishment is almost criminally ill-equipped to deal with people like us in a positive, constructive way that benefits us, rather than their bottom line. So, we can’t look to doctors alone for our salvation. In some cases, we know more than they do. But they’re so busy being doctors, that they don’t take the time to learn — or they think they don’t have to.

    It’s very complex, of course, and there is no easy answer. But we can find our own way. Eventually, for many of us, that may be our only alternative.

    Thanks for writing and thanks for the link.

    Be well


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