Tuesday, July 31, 2012

Gimme Some Truth


Truth (Photo credit: Wikipedia)
A few minutes before midnight two Fridays ago, most people would've considered my situation (partially and increasingly paralyzed due to MS) much worse than those of a large group of people who were settling in for a midnight movie in a theater in Colorado. Just a few minutes later, though, my circumstances were suddenly preferable to that of many of those same moviegoers, victims of the latest tragic spasm of mass murder to tear through the increasingly stressed fabric of American society.

The unsettling facts of this abrupt turnaround in fortunes underscore much of what I've previously written about in this space, the fragility and capriciousness of life, the delicate nature of the foundations of day-to-day existence, and the importance of consciously appreciating our allotment of each bit of that most precious of all commodities, time. Despite the unquestionable struggle of daily life with a progressive debilitating illness, for all but the most afflicted things could get worse, much worse, and in less time than it took you to read these words.

Soon after the initial shock and anguish provoked by the tragedy in Aurora, the nation as a whole turned to a question so familiar to sufferers who have experienced the devastating diagnosis of a serious illness, why? Pundits and experts pontificated about all of the usual suspects; lax gun laws, the unstable mental state of the shooter, the widespread violence that has somehow become a hallmark of American culture. Of course, none of these answers satisfies, just as an MS patient's search for reasons can never truly be fulfilled, or sense be made of the fate that has befallen them. Are we victims of genetics, some insidious environmental infectious agent or toxin, retribution for some past so-called sin or indiscretion, or simply bad luck? And once the disease strikes or the bullets fly, does the "why" really even matter?

Of course it does. If MS is ever to be cured, the "why" of the disease must be positively identified and solved. If the United States of America is ever to get past these last several decades of spasmodic violence, during which it has experience a devastating relapsing remitting pattern of mass murder, the reasons behind these outbursts must be understood. The ever-growing list of horrifically violent incidents is instantly recognizable to most Americans, a gruesome litany that includes the Richard Speck murders, Oklahoma City, Columbine, Virginia Tech, Gabby Giffords, and now Aurora. Sadly, I've left out far too many other such episodes, sudden eruptions of slaughter that rivet the attention of the nation for a week or two, but once the dead are buried and the news cycle rolls on the questions stop being asked, and we retreat once again into a paper-thin shell of willful ignorance. Just as patients with relapsing remitting multiple sclerosis suffer temporarily crippling flare-ups of their disease and then revert to something approximating normal, constantly living in dread of the next attack, we as a nation suffer through these periodic attacks of butchery, captivated for a few moments but then returning to what qualifies for normal, albeit with a resigned certainty that in some 12 or 18 months another madman will open fire on another group of innocents.

The problem is that the answers to both MS and this new American tradition of random massacre (yes, these things do happen in other countries, but not nearly with the shocking regularity as here in The States) are tremendously complex, neither lending themselves to quick answers or easy solutions. The crucial first step in unraveling these complexities is understanding the truths behind both maladies, truths that require not only expertise in the medical and social sciences, but a lifting of the veil behind which the machinations of the medical and social establishments operate. In the case of MS, the quest for a cure is blunted by a system of medical research that has grown into a dysfunctional cash fueled behemoth, and the key to putting an end to the phenomenon of mass murder is not attempting to understand the motivations of each individual killer, but coming to an understanding of what it is about modern American popular culture that churns out these self-appointed executioners with such frightening consistency.

I don't pretend to have the answers to either the predicament, but I do have my opinions. The field of medical research has come to be dominated by the big pharmaceutical companies, who fund an ever-increasing amount – well over 70% – of the research done in this country. This was not always the case, as just a few decades ago most medical research was done in academic laboratories, relatively free from the influences of the marketplace. Now, research is funded by the very companies that stand to profit from that research, a situation that screams "conflict of interest". Studies of new drugs are funded by the makers of those drugs, and the results of those studies are published in journals that are often heavily influenced of these same companies, in ways obvious and not. Research on therapies or compounds that stand little chance of turning major profit is either never initiated or left to die on the vine. The doctors who dispense the medications produced by this system, while not blameless themselves, often must rely on this very same research when coming to treatment decisions.

Though it's easy to paint Big Pharma as a monolithic evil entity, the truth is that these corporations are only doing what public companies are mandated to do, constantly increase their bottom line. The job of pharmaceutical company CEOs is not to bring to market new drugs that would be of the most benefit to the patients taking them, but to constantly increase their company's profits to satisfy the perpetual drive for endlessly increasing stock prices. The problem lies not in the malevolent intent of those who are the gears and fuel of the modern medicine machine, but rather in the construct of the machine itself. Our system of medical research has evolved into a terrific engine for driving profit, but a terrible mechanism for actually encouraging the visionary, groundbreaking research required to find novel new treatments and even cures.

Likewise, popular American culture plays a role in influencing those whose sense of alienation, disenfranchisement, and frustration boils to the point of bursting, resulting in desperate acts of hateful self-expression that too often take the form of the massacres that now scar the American cultural landscape. Yes, the culprits are undoubtedly mentally ill, but their mental disturbances can be magnified to the breaking point by a pop culture that celebrates narcissism, bad behavior, and fame for fames sake, while fostering absurdly improbable fantasies of privileged lives and endless bounty.

We are constantly bombarded, in words and pictures, by messages whose intent is to make us feel discontented and somehow lacking. The ultimate goal of advertising, after all, is to create a sense of longing in those at whom the messages are targeted. Our lives could be as happy, exciting, and glamorous as the people on TV if only we buy the right beer or car or antiperspirant or clothing. But what happens to those loosely tethered souls on the fringes of society who follow these leads but find their lives as frustrating and meaningless as ever? Loneliness cannot be conquered by purchasing the latest and greatest chewing gum, and dysfunctional social skills cannot be fixed by driving the shiniest new Chevrolet. An urgently growing sense of estrangement and feelings of inadequacy cannot be eased by a constant celebration of the gilded few, with peaks inside "celebrity cribs" and lifestyles of the rich and famous, so out of the reach of the average American that those leading such rarified lifestyles may as well exist on another planet.

Popular culture has lately taken to bestowing fame on those who in the past would not only have been ignored, but quite likely denigrated for their poor behavior. Television has become dominated by reality shows depicting a warped, cartoonish world in which boorishness, selfishness, and outrageous self-aggrandizement is encouraged, bestowing celebrity on those that aren't merely completely devoid of talent, but quite often of any redeeming qualities whatsoever. Just as MS patients are cajoled into believing in drugs whose mechanism of action cannot even be explained by those who manufacture them, popular culture pours forth a noxious pablum of false promises that is the modern equivalent of bread and circuses.

Films have largely replaced character development and the art of acting with mono dimensional heroes and computer-generated stylized violence (the shooting in Aurora erupted as an on-screen shootout was being played out), and professional sports now put up with prima donnas whose only allegiance is not to their team or fans but to themselves and the almighty dollar. When I was growing up, if a football player did a dance after making a routine catch or tackle, his ass would have been relegated to the bench regardless of the magnitude of his athletic prowess, and a baseball slugger who flipped his bat and took the time to admire his own home run could be sure that his next at-bat would feature a fastball thrown directly at his ear hole. Today, such shenanigans are not only tolerated but celebrated, the perpetrators showered in adulation and fantastic riches. It's cool to be a jackass.

The emergence of the Internet and social networking, for all of their potential positives, including the ability of MS patients to network and gain power through knowledge, have also given rise to cyber bullying, and for those not part of the flash mob an increased sense of isolation and alienation. Facebook has given everyone the chance to trumpet their every thought and action, no matter how routine or uninspired, and to amass hundreds of "friends" with whom they've actually made little or no actual human contact, potentially diminishing the very meaning of true friendship. The Internet provides access not only to vast resources that had previously been the exclusive province of a chosen few experts, but also, for those so inclined, information and imagery that can make seem acceptable what most would consider depraved, and an avenue for securing the knowledge and materials to make real wicked or violent fantasies. Alone in front of their computer screens, troubled individuals can give full rein to the darkness within, nurturing it to the point where it can stay within no longer. Awash in seething anger and enraged by the frustration of not gaining the attention to which so many now seem to think they are entitled, the borderline personality can concoct and bring to fruition a chilling plan that will at once exorcise their anger and gain them the attention they feel has been unfairly denied them.

The politics and governance of our nation has likewise suffered a hard turn towards the ugly and dysfunctional, a creeping degradation akin to the civic equivalent of progressive MS, inexorably crippling the body politic even as we look on with increasing concern. Opposing viewpoints are vilified, and those espousing them seen as enemies, rather than fellow countrymen with a different opinion. Compromise is seen as weakness, even as the nation's problems fester and threaten the well-being of our great experiment in democracy. Ideologies have become chiseled in stone, leaving no room for negotiation and problem solving, so instead a citizenry hungry for answers gets posturing instead of solutions.

The truth is that the bumper sticker ideologies of the right or the left can no more easily solve our complex political problems than chanting "I Have MS but MS Doesn't Have Me" can cure the horrors of multiple sclerosis. Our political leaders are themselves bought and paid for by special interests that will countenance no deviation from the party line, prisoners to a political system held hostage by the need to constantly fund raise in a never-ending election cycle. None dare speak of the actions that are desperately needed, to tell the public that yes, taxes must be raised and entitlement programs must be cut, that we must tend to our own problems before attempting to solve the world's, and that the corrosive influence of big money politics must somehow be curbed, as the current state of affairs is untenable even in the short run. Doing this would take courage and true leadership, attributes that those in positions of power, and those who aspire to them, seem incapable of mustering. Left with little or no inspiration, the populace is left adrift, watching helplessly as a great nation is devoured from within, just as the MS patient watches their once strong body slowly failing. For those already feeling desperate, the constant political rancor and its attendant paralysis can only stir the fetid mental miasma that eventually leads to an unquenchable appetite for destruction.

This lack of courage and leadership coupled with a popular culture that puts little emphasis on integrity and elevates the crass is evidenced in both the deficiencies of modern medical research and the seemingly unresolvable problem of the periodic episodes of mass murder that are a malignancy blighting the entire nation. We need to hear the truth about a medical system gone off the rails as well as political and cultural realities that have warped well beyond what would have been recognizable only a few generations ago. As patients and as a nation our needs are many, but none is more important than a large dose of the truth.

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  1. The truth can be a bitter pill to swallow. No problem, that's why enteric coating was invented? ...and the sad truth is.... Thank you Marc, right on!

    1. Yes indeed, thank heavens for enteric coating, at least when it comes to medicine. As for the social and political realities facing Americans, I think we may already have too much sugar coating. A bitter pill in the form of a long hard look at our troubled landscape might do us some good…

  2. The sad truth to me is we have become a nation whose attention span is the length of a commercial, 30 seconds. We have little patience when it comes to looking under the hood to find the actual problems. We buy into things like the description of late term abortions without ever asking who has them or why? We buy into soundbite catch phrases like "death panels" without ever asking what they would do. We buy into soundbites on whether a CEO was a job exporter without asking why or whether it was his job. So often, the truth is much more complicated than we have conditioned ourselves to be able to accept.

    Taking the time to actually learn about an issue, even one with heart felt intense emotions, has become a relic. Of course those who do take the time to learn are quickly shouted down. I miss when my dad would take the opposite side of whatever I said as we talked politics around the kitchen table. He did so to make me think why others disagree. Sadly this is a lost practice. We want everything in black and white, good and bad, and we want it in 30 to 60 seconds.

    1. Our public education system that is only a shadow of what it was 30 or 40 years ago. Unfortunately, I suspect that some of the powers that be actually prefer it this way, as an undereducated, less sophisticated population is much easier to manipulate. We've seen funding to public schools slashed in many places throughout the nation, and we've developed a cultural suspicion of those unashamed of their education, so much so that the word "intellectual" has taken on a derogatory connotation. We've seen this happen before in other cultures through history, and it never ends well.

  3. Wonderful, Marc. I agree with you wholeheartedly. While you are blasting big pharma, I think it's also important to follow the money for other putative cures for MS - people (including those who provide CCSVI treatments) benefit a lot from this illness and from poverty and from ignorance and so many societal ills. I've always been a fan of public health, when it has the courage to take on upstream things - the causes of illness, the causes of poverty, the causes of mental illness - and act on these things to provide prevention. Unfortunately, public health in your country and mine has been rendered toothless and we are too foolish to listen to them.

    1. Dorothy: CCSVI treatment is real. Tell my wife, (22 months post procedure), that the elimination of her MS symptoms is some sort of placebo effect or 'putative cure'. It may not be a cure for everyone - but it worked for us.

    2. Dorothy-certainly, the corrosive effects of the blind quest for the Almighty dollar has corrupted almost every corner of our medical system, and certainly is not only limited to Big Pharma. The system is addicted to cash, to the definite detriment of the patient.

      Anonymous-I don't think Dorothy was suggesting that CCSVI doesn't work for some patients, but it certainly does not work for all, and many practitioners are making huge amounts of money performing what is still an essentially experimental procedure (for which no standards of practice have been agreed upon) to treat a condition which still presents more questions than answers. Congratulations on your wife's successful treatment, I only wish all who have undergone CCSVI treatment could share her good fortune. Unfortunately, many patients have undergone treatment to little or no benefit, and their stories are hard to find on Facebook sites or YouTube.

  4. Very thoughtful post, Marc. I can assure you that this is the situation not only in the U.S. Here in India things are not very different.

    I would add one point to those you have so effectively made. People are increasingly reluctant to take responsibility for their actions, preferring to blame 'outside facors' for their wrongful behaviour.


    1. Hi Manju, how lovely it is to hear from you, my old friend. As usual, your wisdom shines through your words, as the almost complete lack of accountability among public and private citizens alike leaves us very few examples of people suffering the consequences of their actions. It's great that we live in a world where people get second chances, but the hard truth is that some people don't deserve their second chance.

  5. Well done, Marc. I love the bumper sticker analogy.
    I was wondering why I wasn't getting better. I chant, "MS doesn't have me," daily without success. Maybe if I REALLY put some feeling into it? ;-)

    1. Yes, put some real feeling into it, and surround yourself with images of unicorns and rainbows. Guaranteed to cure your ills…

  6. Excellent blog, Marc! Although we are one-tenth the size in population, Canada seems to be trying to catch up (down?) to the U.S. in its spiral of greed and lack of compassion for the masses. I have seen a lot in my 51 years, and I definitely now see an increasingly disturbing pattern of despicable behaviour by so many corporations, political parties, media ventures, and an ignorant society.

    I am still in shock that the discovery of the prevalence of CCSVI in people with MS has not been greeted with a little bit of a "eureka" moment but instead was initially called a "hoax" by a "so-called" expert in MS who has enormous conflicts of interest with his involvement with pharmaceuticals. I used to have great pride in my country of Canada, but our Health Care System does not deserve to have the word "care" in its name!

    1. Yes, the initial response by the neurologic establishment to CCSVI was/is shocking. Even if the neurologists honestly believe the CCSVI hypothesis to be wrong (and many do), one would think they'd be anxious to engage in meaningful clinical trials, if only to prove their point and thus get CCSVI off the table. By stonewalling trials, they've only inflamed the MS population and now must reap the harvest of their hubris by putting up with patients in open revolt.

      At least up in Canada CCSVI has received press coverage. Down here in the states, the media has been almost universally silent on the subject.

    2. There is some argument that the misinformed media coverage has had a negative impact, but at least we have Anne Kingston of Maclean's Magazine giving informed, honest coverage!

  7. I'll give you the truth, if you can handle the truth. The truth is your getting more prolific as you deal with this challange that your ?blessed? with. I think your on to something here. The metaphor 'nail on the head' comes to mind. I hope you don't mind if I borrow some of your verbiage, like, 'noxious pablum'(classic). Seeing as I'm many miles away, I'll chance that you don't mind if I share some of your text. I feel better already that we got that out of the way.
    Finally, your choice of John Lennon 'Gimme some truth' which, I've never heard before is magnifico.(real word, borrowed from my Italian friend)
    Dealing with this debilitating condition and knowing that 'something is rotten in the State of Denmark' (borrowed from Shakespeare) is like living in a Salvador Dali painting and trying to make sense of it. "fuggedaboutit"

    1. Jim, feel free to borrow anything that you read on this blog. I never expected Wheelchair Kamikaze to get as much attention as it has, and if people find my words worthwhile enough to share I'd be an ungrateful bastard not to gladly allow it. I would appreciate some attribution, if possible.

      Glad you liked the John Lennon song. It's long been one of my favorites…

  8. MonicaS from NiagaraAugust 1, 2012 at 4:50 PM

    BRAVO, Marc!!!! True, there are few simple answers, but that must not stop us from asking the difficult questions, and always continuing to seek the truths and answers. Could you arrange it so everyone in the world reads, understands, and follows your very wise words.

    1. I'm just thrilled that anybody reads this, much less everyone in the world. Glad to see that this post connected with people, and will maybe get a few people think. It's hard to watch the lack of civility that now passes for civilization without tossing in my two cents worth…

  9. ms cure enigmas.net Anna MacyAugust 2, 2012 at 12:17 PM

    The election of Ronald Reagan in 1980 was perhaps the most fundamental
    element in the rapid rise of big pharma – the collective name for the
    largest drug companies. With the Reagan administration came a strong
    pro-business shift not only in government policies but in society at
    large. And with the shift, the public attitude toward great wealth
    changed. Before then, there was something faintly disreputable about
    really big fortunes. You could choose to do well or you could choose
    to do good, but most people who had any choice in the matter thought
    it difficult to do both. That belief was particularly strong among
    scientists and other intellectuals. They could choose to live a
    comfortable but not luxurious life in academia, hoping to do exciting
    cutting-edge research, or they could "sell out" to industry and do
    less important but more remunerative work. Starting in the Reagan
    years and continuing through the 1990s, Americans changed their tune.
    It became not only reputable to be wealthy, but something close to
    virtuous. There were "winners" and there were "losers," and the
    winners were rich and deserved to be. The gap between the rich and
    poor, which had been narrowing since World War II, suddenly began to
    widen again, until today it is a yawning chasm.

    The pharmaceutical industry and its CEOs quickly joined the ranks of
    the winners as a result of a number of business-friendly government
    actions. I won't enumerate all of them, but two are especially
    important. Beginning in 1980, Congress enacted a series of laws
    designed to speed the translation of tax-supported basic research into
    useful new products – a process sometimes referred to as "technology
    transfer." The goal was also to improve the position of American-owned
    high-tech businesses in world markets. The most important of these
    laws is known as the Bayh-Dole Act, after its chief sponsors, Senator
    Birch Bayh (D-Ind.) and Senator Robert Dole (R-Kans.). Bayh-Dole
    enabled universities and small businesses to patent discoveries
    emanating from research sponsored by the National Institutes of Health
    (NIH), the major distributor of tax dollars for medical research, and
    then to grant exclusive licenses to drug companies. Until then,
    taxpayer-financed discoveries were in the public domain, available to
    any company that wanted to use them. But now universities, where most
    NIH-sponsored work is carried out, can patent and license their
    discoveries, and charge royalties. Similar legislation permitted the
    NIH itself to enter into deals with drug companies that would directly
    transfer NIH discoveries to industry.
    Quote from The Truth About Drug Companies By Marcia Angell. And what is true about big pharma is true for American -Globalize Capitalism - in General.Another example, the day after Reagan took office Donald Rumsfeld CEO of Searle appointed new FDA Director who approved Aspartame which up until then bFDA had refused because their scientisis found it caused cancer. Instead of acting politically aAmericans just flip out

    1. Thanks for giving some historical background to our social and economic descent. Suffice it to say that I agree with Ms. Angell's assessments.

      Unfortunately, most Americans don't act politically or flip out, they just keep on keeping on, which is just what the profiteers want.

  10. Hi Marc I love reading your blogs...this one in particular is so true. I live in Canada and your are aware our country is changing for the worse. We have Alberta and the dirty tar sands and you have Texas. We have a government that is pro business at the expense of the environment and anti science. Sound familiar! I do not respect the MS Society. As per your previous post about McLeans Magazine coverage on how the government let down MS patients with their study on CCSVI. As per a UBC study in Vancouver Betaseran does not slow progress but lessens relapses, Now another study stated Betaseran Increase uptake of Vit D recently, reaching for straws it appears to me. Since I want the truth I am a outsider and labelled a troubled child. I dislike I HAVE MS BUT IT DOESN"T HAVE ME. SO I celebrate the truth and will not participate in the status quo of listening to the toxic and noxious pablum of MS clinics and big pharma. I will continue to read blogs such as yours for common sense truths and self thinking. Take care to fellow self thinkers. M

    1. Thanks for your response and generous praise. It's very important for informed citizens to challenge conventional wisdom and to "look under the hood" of government and social institutions. The polarization that has occurred in American politics is one of the most detrimental developments in our nations history. We've gone through politically difficult periods before, but in this case the willingness to use the entire economy as a hostage to forward a very narrow agenda is unprecedented and extremely dangerous.

      Hopefully, things are a little bit more civil in Canada. I believe your political system isn't quite as addicted to money and the influence of lobbyists, which at least leaves some room for rationality.

  11. Marc: You are a true philosopher at heart - and we love you for your insights.

    1. Thank you, I think I get it from my grandmother, who famously said, "ladies and gentlemen, take my advice, pull down your bloomers and slide on the ice."

      I'm actually not quite sure what that means, which just goes to show what a deep thinker grandma was…

  12. I thank you.
    I wonder if we are looking for a cure for our lack of integrity any more than we are searching for a cure for MS. I remember what America used to be. There was a lot less hate.

    1. I'm afraid hate has always been out there, but at least in previous times of peril it seems that great leaders stepped forward. I keep looking, but don't see any such saviors on the horizon…

  13. On this 30 degree celsius night, man, your writing is so cool to read.
    So lyrical and accurate. Keep on writing, you have a gift.

    Cariboo Chris

  14. Your eloquent prose is exactly the reason why I blew up the TV back in '85. I don't need all that crap. We took things into our own hands, chez nous, and are keeping it real in our own little town. The whole "think global, act local" thing. We've got some amazing community building going on out here, and it's starting to rub off to adjacent communities. Power to the people and all that...

    I'm this close to giving Biogen-Idec the "heave ho", and just work on eating pure foods, and moving my body as I can. Tysabri has kept any major flares at bay, but I'm progressing anyway. Grrr!

    Turn off the tube, homeschool your kids, vote your conscience, grow your own!

  15. Well, God is no respecter of persons, right? We know that because we have MS and we didn't goddamn deserve it. lol. Btw, I seem to have gone to the same fortune teller and gotten an equally, and rather similar, prediction. I'm still waiting. Hey, thanks for commenting on my blog entry in Everyone Here is Jim Dandy. I've not been back to America for three years now, but it is interesting to learn that the hypocrisy and essential inaction of govermental leaders remains the same all over the world.