Wednesday, April 23, 2014


A reliable staple of science fiction space adventures is the concept of “suspended animation”, whereby astronauts traveling to far off galaxies are put into a kind of hibernation during which they don’t age or otherwise feel the effects of their long, perilous journeys. Safe in their suspended animation pods, these fictional voyagers are awakened upon reaching their destination, blissfully unaware of the months, years, or decades that have passed since they left their home planet. For all they know, while they were in suspension the world they left may have changed radically, or may no longer even exist. Separated from their previous lives by time and distance, the reanimated travelers now inhabit a new reality, for better or worse (in most pieces of science fiction, it’s usually for worse).

I’ve come to realize that in some ways my illness has had a similar effect on me. As my creeping paralysis has progressed, leaving me less and less able to take part in the ordered chaos of the world at large, I find myself increasingly alienated from the life I once knew, my space in the existence I used to occupy now almost totally erased. I’m still here, of course, part of the world but also apart from it, more spectator of than participant in the game of life. The never ceasing whirl of activity outside of my metaphorical and physical windows continues on, but the threads that once tied me to the self-perpetuating clamor of everyday life have largely been cut, putting me in a sort of conscious state of suspended animation. The gears of the world grind on, but more and more, they grind on without me.

The most tangible examples of this are the changes that have come to the industry in which I once earned my living. I spent 20 years building a career in TV and video production, which culminated in my heading up the DVD Production Department of a huge multinational music/entertainment conglomerate. My group was responsible for the programming and mastering of hundreds of discs, some of which sold hundreds of thousands of copies. When I first started in the position DVDs were such a brand-new technology that most people hadn’t even yet heard of them. Within a few years, though, DVDs exploded, and just as my disease was forcing me to to “retire”, Blu-ray discs had started to emerge as the next generation of consumer media. Now, over seven years later, streaming video (à la Netflix) is all the rage, a development I'd long anticipated  but never got the chance to play a hand in.

The changing landscape of video production and consumer consumption has marched on without me, and the technological infrastructure to which I was a native and used daily to earn my keep has in short course become archaic. If I were to be suddenly cured and tried to reenter the workforce I’d be so far behind the curve that some snot nosed kid just out of college would put my once formidable technological knowledge to absolute shame. As far as my former industry is concerned, I might as well have spent the last seven years on a spaceship in suspended animation. Ground control to Major Marc…

The shock of my diagnosis created a seismic shift in my existence, and that shock reverberates still. You’d think that 11 years after my initial diagnosis, and over 15 years since my first symptoms started cropping up, I’d have somehow gotten used to the idea of my illness and its destructiveness, but no, several times a day I still find myself smacked in the head by the realities of my predicament. This perpetual state of shock has left parts of me petrified, in every sense of the word. Petrified as in scared silly, but also petrified as in unchanged despite the passage of time. I was officially diagnosed at age 39, and now, at 50 years old, parts of the inner me have been left untouched by the intervening years, stuck in a kind of stasis, in much the same state that they were when the disease first took hold. It’s kind of a diabolical case of arrested development; even as my body becomes ever more decrepit, parts of the me encased inside of it have been untouched by the passing years.

Almost all of my old hopes, dreams, and desires stand frozen, as if parts of my very soul have been put on ice (apologies to Eldridge Cleaver). Now, instead of propelling me forward in an effort to fulfill them, those old longings and expectations only serve to put an exclamation point on just how much the disease has cost me. The physical toll is obvious but the psychic not so much, camouflaged by copious amounts of effort spent trying to maintain a sense of stability and even contentment in the face of this brutal and ceaseless storm. Will I really never get to have my breath taken away by the artistic splendors of Florence, or purchase some ludicrously luxurious and fast automobile, or get stinking drunk on ouzo while carousing on an idyllic Greek island? While healthy, there was always the hope of erasing old disappointments with new successes, of paving over past mistakes with future achievements, but now those previous failings have been transformed from works in progress into set pieces, dioramas in the museum of my mind.

Yes, I dreamed big, and dreams die hard. In fact, I don’t think they ever die at all, but my old dreams now lie fixed behind a set of more humble but – barring any medical breakthroughs – much less achievable desires. To simply stroll through the springtime air, or to hug my wife with two strong arms, or to mindlessly jot down a note with my now-defunct right hand. In my long-ago life I amassed extensive collections of antique cameras and vintage wristwatches, both of which I took much delight in putting to good use. Now they sit gathering dust in boxes, physical remnants of a life suspended, the impulses that lead to my possessing them still existent but now also packed away by the distressing actualities of my stark new reality.

Much like those science-fiction spacemen, I awake to an environment that is resonant with echoes of my past. This new life is often incredibly difficult, to be sure, but the challenges it presents are also opportunities. Though some old friends and acquaintances have drifted away, new ones, fellow travelers on these uncharted waters, have made the journey much less lonely. The loyalty of my wonderful wife alone is reason to have faith in humanity. By extracting me from the hue and cry of my old healthy existence, my disease has afforded me a sense of perspective that informs my  day-to-day life, and, I hope, might even help some of my comrades both healthy and ill to better navigate their own winding roads.

I’ve learned to not sweat the small stuff, and that most of what I used to consider gut wrenching problems are in reality small stuff. As my disease continues its infernal progression, finding contentment in what I have rather than what I once wanted or have lost has become a mechanism of survival. As the Buddha discovered centuries ago, desire, or more accurately attachment to desire, is indeed the root of all suffering. Despite the undeniable hardships within which I find myself stuck, I laugh just about as often as I used to, the sheer absurdity of my situation fodder for more laughter than tears. My mom is dealing with her own sense of suspended animation, courtesy Parkinson’s disease, yet somehow our telephone conversations often find us convulsed in hilarity. We both have more than a touch of the rascal in us, and the juxtaposition of our old pre-suspension hijinks with our new more sedentary and sedate forced existences serve to highlight the farcical nature of our puny little lives. Taking oneself too seriously is perhaps the gravest mistake a person can make.

Don’t get me wrong, despite the lessons learned and perspective gained, there’s virtually nothing I wouldn’t do to regain my health. As my creeping paralysis continues its increasingly destructive march, my tolerance for risk in my search for answers has become almost boundless, but despite my precarious situation there is still satisfaction to be squeezed out of these undeniably frightful circumstances. The old me is indeed in suspended animation, hopefully one day to be roused once again, but there is still life to be lived in this strange new world in which I find myself. It’s certainly not a life I would’ve chosen, but like it or not, it has chosen me. Despairing over my losses is only natural, but giving in to that despair would hand victory to the cosmic pranksters that conspire to make me the butt of their joke. I still have a middle finger capable of being raised, and with that raised finger I’ll continue to poke those pernicious little fuckers right in their beady little eyes. The joke's on them, for although part of me has been put into suspended animation, I'm still full of piss and vinegar…

Thursday, April 10, 2014

11 Years Gimpy and the Lessons Learned, Part Two: Medicine

Caduceus Symbol - Medical Symbol MD

Caduceus Symbol - Medical Symbol MD (Photo credit: wcm1111)

Last month I “celebrated” the 11th anniversary of my MS diagnosis with part one of Lessons Learned (click here), which looked at some of the insights my grappling with the disease had revealed about life, both the one lived inside my head and the kaleidoscopic swirl of the world around me. Along with the expected liberal dose of anguish, the disease has also brought with it some unexpected flashes of understanding, and maybe even something akin to a bit of wisdom. Not to say that I’ve got much of anything figured out, but I have at times gained a sense of clarity that was most often missing back when I was healthy.

My decade plus wrestle with chronic progressive disabling illness has also taught me a hell of a lot about modern medicine and medical research. Admittedly, these are lessons I naturally would rather have not had to learn, but I didn’t have much choice in the matter. Multiple sclerosis is an enigmatic disease, and the rarer, progressive forms of the disease are particularly inscrutable, but my affliction managed to wake within me a long dormant inner scientist, or an at least inner scientist wannabe, who finds a lot of this stuff fascinating, frustrating, infuriating, and maybe sometimes even a little bit fulfilling. I sure do wish that wake-up call had come in the form of something much less horrific, but again, that wasn’t up to me. If nothing else, the time since my diagnosis has made for quite an education.

When I was living my long-ago and far away healthy life, my interactions with the world of medicine were usually brief and fairly perfunctory, even if I did have a pretty good working knowledge of disease due to my well hewn hypochondria. I took comfort, though, in the seemingly nonstop procession of blaring headlines and breathless news items regarding the latest medical breakthroughs, which painted a picture of modern medicine as something close to a bright and shiny miracle machine, ever more able to conquer devastating illness and fix broken bodies.

When I got sick, however, it didn’t take long for me to come to the uncomfortable realization that I’d been somewhat hoodwinked, that although some specific areas of medicine had seen huge advances, large parts of the modern medicine miracle machine so often portrayed in the media are in fact held together by shoestring and chewing gum. High-tech and expensive shoestring and chewing gum to be sure, wielded by some dedicated and knowledgeable people, but in far too many cases not much more effective than the shoestring and chewing gum that existed half a century ago.

Tremendous breakthroughs have been made in the surgical arena, where procedures that are now done daily would have been looked on as the stuff of fantasy 50 years ago. It wasn’t until 1954 that the first kidney transplant was performed, and over the next 15 years transplants of lungs, livers, and hearts were first successfully achieved. These procedures, all lifesavers, are now common if not routine. The advents of bypass surgery and angioplasty have been incredible game changers in the field of cardiac medicine, and neurosurgery too has witnessed advances barely dreamt of just a few decades ago. Surgery has become increasingly less invasive and much more survivable. Back in 1989 I suffered a detached retina, resulting in a surgery that required a four-day hospital stay and a two-month convalescence. Today, the same procedure is done on an outpatient basis. Incredible.

When it comes to treating many diseases, though, shockingly few tangible advances have been made in the last 50 years. Antibiotics have revolutionized the treatment of diseases caused by bacterial infections, but wide swathes of other illnesses have proven incredibly hard to crack. Neurologic diseases such as ALS, Parkinson’s, Alzheimer’s, and other less common maladies of the nervous system remain as untreatable as ever. The so-called autoimmune illnesses like diabetes, lupus, multiple sclerosis, and rheumatoid arthritis continue to stymie researchers, and though some of these diseases now have treatments that improve quality of life, none have divulged any of the secrets that might lead to a cure. 

Despite massive amounts of time and money spent on research, many cancers remain just as deadly today as they were in years past. Though some specific malignancies - such as those of the breast, prostate, and lung - are much more survivable today than ever before, the overall cancer death rate has decreased, astoundingly, only 5% since 1950 (click here)! When it comes to the vast majority of cancers, medicine has learned how to keep those afflicted alive somewhat longer, and there is of course much to be said for that, but it hasn’t found a way to keep them from dying of their malignancies. All in all, many diseases, though perhaps better understood, remain devastating and deadly despite the efforts of the modern medicine establishment. The situation makes me want to howl in dismay.

Naturally, the disease I’m most intimately familiar with is MS. Surely, there have been significant advances made in treating the relapsing remitting form of the disease, but the progressive flavors of the disease remained wicked, untamed, diabolical beasts. Though the mysteries of MS are slowly being unraveled, the advances have been incremental, and each new discovery seems to only open the door for more questions. Just a little over 20 years ago there were no treatments for even relapsing remitting multiple sclerosis (RRMS), aside from the use of intravenous steroids to help calm down active relapses. The disease was considered by many doctors to be a “diagnose and adios” illness, for which not much could be done. Today, there are 10 FDA approved disease modifying drugs on the market, with a handful more on the way. None of these drugs is perfect, with a wide variance of effectiveness, tolerance, and potentially dangerous – and even deadly – side effects among them, but they have improved the quality of life of people with RRMS, in many cases dramatically.

I was intensely skeptical and harshly critical of some of these drugs when they were first introduced, thinking that their risks would far outweigh any potential benefits, but time and mounting evidence has softened my views. Facts are facts, and the preponderance of evidence shows that when administered properly to diligently monitored patients, even those MS drugs considered the most dangerous have had tremendous positive impact on many of the relapsing remitting patients who take them, at times even allowing some patients to live lives free of any evidence of disease activity, and experienced neurologists have learned to manage the risks involved quite well. That said, the status quo remains unacceptable. There is still nothing for us “progressives”, and all of the current MS drugs tinker to a lesser or greater extent with the workings of the intensely complex human immune system, the product of tens of millions of years of evolution. It’s clear that the aberrant immune response that has become the hallmark of MS is in reality a symptom of a much greater and as yet undiscovered ill, and continued focus on that immune response will not lead to a cure. Unfortunately, the very success of the immunosuppressant agents used to treat MS has made the search for the ultimate cause of the disease all the more difficult. Why? Because, quite simply, our system for medical research is flat out broken.

Up until about 20 or 30 years ago, most medical research was done on behalf of governments and academia, for whom profit potential didn’t much play into the equation. Since the 1980s, though, more and more research has been funded by the big pharmaceutical companies, and today upwards of 75% of all medical research is powered by pharmaceutical company monies, with that number growing ever higher due to our current economic and political climate. Though some of the business practices of these companies can be nauseating, there’s nothing inherently evil about the companies that develop, market, and manufacture pharmaceutical products.

It’s vitally important when thinking about these Big Pharma companies to keep in mind that they are publicly traded for-profit entities, and as such they are mandated by law to be beholden to their shareholders, not to the end-users of their products – otherwise known as patients. This dynamic creates some inherent conflicts of interest, as the mission of any business is to generate ever-increasing profits, and when it comes to medicine greater profits do not always translate into greater therapeutics. In some cases, the very reverse may be true.

Simply put, the job of a drug company CEO is not necessarily to produce the most effective drugs, but the most profitable. In point of fact, if a pharmaceutical CEO put medical potential above profit potential he could very well be breaking the law. Therefore, pharmaceutical company research monies pour into projects that stand the greatest chance of generating terrific profit, which are likely not efforts that might upend an already lucrative business model. This is why so many of the new drugs we see are of the “me too” variety, variations on older drugs that have already proven their profit potential. The corrosive influence of big money generated by blockbuster drugs has thoroughly infiltrated our medical research model, skewing the focus of much medical research from purely scientific to also encompass the predilections of the marketplace.

For their part, researchers, as well-intentioned as they may be, must pay the rent and feed their families just like everybody else, and so are drawn to projects most likely to receive generous funding, which these days are those that have the attentions of the big pharmaceutical companies. Thus we have on our hands a kind of highly dysfunctional perpetual motion machine, fueled by people performing their jobs to the best of their abilities, which unfortunately is not constituted to produce the results most desired by legions of sick people and the professionals who treat them.

The problem is insidious, and is at this point woven into the very fabric of the system. Though this system has certainly come up with its share of medical advances, it hasn’t produced much in the way of cures, and in fact can stymie potentially paradigm shifting research that doesn’t present any obvious profit potential and/or threatens the status quo. Older drugs that might be repurposed for the greater good, or natural and alternative remedies that might be as effective as pharmaceutical products stand very little chance of receiving the research dollars needed to prove their worth simply because they have no potential to generate tremendous amounts of cash. Radical new concepts are often shunned not out of evil intent but for cold business reasons, as bringing them to fruition would be cost prohibitive, and even if successful they could kill the proverbial goose that lays the golden egg. We have turned diseases into multibillion-dollar industries and the sick into consumers in a topsy-turvy medical research environment in which success is most often measured in dollars earned, not diseases eradicated or people cured. What’s the answer? Got me, I’m too busy slowly watching myself becoming a complete cripple.

So, where does this leave me after my 11 year struggle with MS? Well, conflicted, to say the least. I’ve met incredibly dedicated professionals who are literally obsessed with finding the cure for MS, filling me with hope. Simultaneously, though, I’ve come to understand that despite these folk’s best efforts, the system within which they work is fundamentally flawed, a fact which fills me with consternation. That gleaming tower that modern medicine appeared to be when I was healthy has instead been revealed to be more a product of spin and public relations than reality. I’ve evolved as a person and a patient, as I’ve come to understand that there are no absolutes when it comes to life and medicine, and especially when it comes to a disease as devilish as multiple sclerosis.

Despite the mysteries of the disease and the madly dysfunctional research model that is now the norm, each day I read some stimulating new bit of research, or talk to a researcher wholly dedicated to the cause, and can’t help but nurture a persistent optimism, even in the face of my relentlessly progressing disease and the tremendous obstacles that stand between me and the realization of my dream to once again be whole. Stem cells may hold the answer, or anti-HIV drugs, or something completely unexpected that may pop out of some far away test tube tomorrow. We can only hope that if and when such a discovery is made, it manages to see the light of day.

Really, though, I just want to take a walk…

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