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.
Truth (Photo credit: Wikipedia)
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.