I’m only going to great lengths to help myself, because no one else will

Happy Festivus Everyone

Festivus is coming. It’s an alternative celebration for the Christmas holiday season that provides an alternative to materialism and commercialism. I’ve come across it before, but it caught my attention again over at The Concussion Blog. Reading up on it, I see that it traditionally takes place on the 23rd of December, but you can celebrate it just about anytime.

You celebrate by:

  • Setting up an unadorned pole
  • Airing grievances against those who have failed you over the past year
  • Engaging in feats of strength – such as wrestling the head of house hold and pinning them (festivities aren’t over till the alpha gets pinned)

I don’t have a pole handy, and there’s nobody around to wrestle, but I’d like to start with the airing of grievances, just to warm up.

I came across an old rant I had written up a while back and saved in a folder on my computer. I wrote it (probably) a couple of years ago, when I was searching high and low for explanations about my symptoms, and why my life was falling apart as much as it was. Seemed like everywhere I turned, I could not get answers from doctors or neuros or other folks, and nobody seemed to think I actually needed answers. They all seemed to think I was crazy, and I was blowing things out of proportion. So, I decided to really take it upon myself to do something about that. This is the rant that bubbled up.

I’m only going to great lengths to help myself, because no one else will.

Either they cannot understand me
Or I cannot make myself understood
Or I cannot understand them
And/or they dismiss me
And/or they make fun of me
And/or they just tell me I’m wrong — they tell me what ISN’T, not WHAT IS, so that’s extremely unhelpful
And/or they don’t have sufficient medical knowledge to identify what’s going on with me
And/or they jump to conclusions before they can figure out what’s up with me
And/or they just write me a script for a med that DOESN’T WORK and then get angry when I come back and tell them it doesn’t work
And/or they treat me like a hostile malpractice risk
And/or they refer me to someone else
And/or they just humor me and try to get me out of their office asap, so they don’t have to feel badly about themselves and their lack of information

IF ONLY SOMEONE WOULD JUST TAKE IT UPON THEMSELF TO ACQUIRE MORE INFORMATION AND FILL IN THE BLANKS, RATHER THAN THROWING UP THEIR HANDS AND ACTING LIKE THERE IS NO ANSWER — SIMPLY BECAUSE THEY DON’T HAVE THE ANSWER(S) I NEED

I don’t think it’s too much to ask, that doctors show a little bit of intellectual curiosity

I don’t think it’s too much to ask, that they make a diligent effort to augment their knowledge on a regular basis — especially if there are clear gaps in their knowledge

I don’t think it’s too much to ask, that they simply admit they don’t know some things and make it their job to find those things out

Or maybe it is…

In the ensuing years, I’m happy to report that I have been able to get some help, but not from the folks I would expect it from. Even my neuropsych has been partly unsuccessful in understanding just how this all affects me. They are fond of telling me that my perception is a bit skewed, thanks to my past injuries, and they love to redirect my attention to the bright side of life. That’s fine, but sometimes I actually have to confront my issues head-on, so to speak.

The big disappointment has been with my doctor. At first, when I was telling them about my issues and explaining to them how it affects me, they were fairly receptive to the info. But I think their interest and involvement ended when I left their office. To this day, they are still not “up” on the details of TBI, and when I go to see them, they either skirt the issue of my TBIs or they act like they know all about them, because they talked to neurologist colleagues about brain injury a couple of times. They are still surprisingly un-clued-in to the issues and effects of them, and I sense a certain bias in them towards me because of my history. It’s like they still think I’m mentally challenged, because I have these issues. But frankly, I’m not in the mood to educate them. Not when I’m sick and tired and am having trouble just handling my own situation.

It seems to me that the lack of knowledge about TBI and concussion on the parts of medical professionals is a sign of systemic, pervasive negligence across the whole medical spectrum. For all the individuals who experience brain injury of some kind each year — and for all the other thousands upon thousands who have a history of brain injury or concussion — you’d think that doctors would exhibit at least a tiny bit of intellectual curiosity about the condition.

But no. It would appear that the medical profession has turned our doctors into highly compensated pill dispensers, just as the financial services profession has turned many a financial advisor into a highly paid sales rep for one “financial products” company or another.

And that’s just sad. I’m not sure how this can be possible. We have tons of focus on heart disease and cancer and many other medical conditions which affect fewer individuals than the legions of TBI survivors out there in the world. I’m not saying those conditions don’t matter and that they shouldn’t get attention — they do, and they should. But brain injury can have such a lifelong, pervasive, persistent effect on people and their long-term quality of life (oh, heck, ability to have a life), you’d think that learning about it and dealing with it would be a top priority for every medical school in the world.

You’d think it would be required continuing medical education, especially considering all the new advances and discoveries that are being made about it each year. You’d think that, with all the new material coming to light about a condition that affects every aspect of a person’s life, from relationships to lifestyle choices to health maintenance, people in a position to help might be just marginally interested in learning about it, over the course of years.

But no. Wave after wave of freshly minted doctors are washing up on the beaches of the medical world without so much as a clue about TBI. Career physicians who have been practicing for decades still persist in their stupidity about how brain injury makes a person immoral or retarded. And neurologists and GPs sit there and look at you like you have two heads, when you try to describe your symptoms to them — and can’t, because you’re all turned around in your brain.

Geez, what excellent fodder for Festivus. If only I had a physical to wrestle and pin… Or a pharmaceutical sales rep…

Ah, well, the day awaits. Here’s hoping I got this out of my system.

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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.

2 thoughts on “I’m only going to great lengths to help myself, because no one else will”

  1. oh i hear you on this one, i have written rant after rant myself, just like this, and we’re in the Canadian medical system, whereas i assume you are in the USA? we’re supposed to have a fantastic medical system! NOT! we’ve been searching since August of 2010, for answers, and still we have no diagnosis, up until last week there was no treatment plan, and only meds. prescribed because “you had these before?, here we’ll try them again?!” unbelievable, the BI group we went to first for help, are now giving us time, with their chief Psychologist, for treatment, and his comment was “how come it took you so long to get here” when his own intake system, refused us, because my partner didn’t have a “gaping hole in his skull” or a black dot on MRI to prove that he has an injury. However my dear friend passed away last year, to Brain cancer, and his diagnosis, treatment, and surgery was all found, and scheduled within 6-8 weeks Unfortunately for him, he didn’t make it, and my partner is still walking & talking, and able to feed himself, so Why bother – its just a bump on the head right? ARGGGGHHHH!! ok my rant over!

    Like

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