Why Must Being Sick Be Such Hard Work?

Being sick sucks.

Of course, this notion is self-evident. Nobody in their right mind wants to be sick. For those who are otherwise completely healthy, even illnesses as benign as the common head cold bring with them a blanket of misery. That misery is multiplied exponentially when the disease you’re forced to deal with isn’t of the temporary variety, but instead is one that sticks around and steadily gets worse. Chronic and progressive disabling illnesses, such as multiple sclerosis, are especially cruel, as they wreak havoc not only on their victims’ bodies but on every aspect of their lives as well. As the disease progresses, hardship piles upon hardship, until accomplishing once simple tasks become daunting challenges requiring grit, determination, and sheer force of will. Putting on a pair of pants turns into an exercise in ingenuity and physical stamina; taking a shower metamorphoses into a death-defying feat. As the body becomes more and more rebellious, new methods of accomplishing old tasks must be devised, or else those old tasks must be dropped from the patient’s dwindling repertoire of the tightly entwined activities that represent normalcy and independence. Realizing that a button-down shirt has become a puzzle too complex to solve can really ruin one’s day.

Given the challenges inherent in grappling with a crippling illness, it would seem only fair that somehow the rest of the world would get with the program, and endeavor to make the life of sick people as easy as possible. Unfortunately, this just isn’t the case. On top of having to deal with all of the physical obstacles and frustrations of feeling lousy, and having to work around bodies increasingly on the fritz, chronically ill patients (or at least this chronically ill patient) are often met with a stupefying array of incompetence, insensitivity, and needless impediments, often personified by the healthcare establishment that is supposed to exist to help them. From the Byzantine bureaucratic bullshit of insurance companies to the sometimes mind-boggling incompetence of medical office staff, patients are often faced with uphill battles that can make getting proper care and needed services disheartening and daunting experiences, the equivalent of a particularly odious full-time job. Nevermind the innumerable frustrations of being disabled in an able world, attempting to navigate the medical landscape can drive one absolutely bonkers.

Back when I first came to grips with the fact that I did need a wheelchair, a notion which grew roots only after a heavyweight bout of denial, I had the not so great fortune to experience the exquisite pleasures of dealing with insurance company automatons, the folks at the other end of the line who excel at sounding entirely reasonable while spouting a line of crap longer than New York City sewer system. The insurance company brain trust decided that the perfect chair for me was one designed for indoor use only, which was completely ill-suited for life in the big city. This was at a point in my illness when I could still precariously hobble around my apartment, and the point of my getting a chair at that precise juncture was to allow me access to the world outside of my apartment door. Inasmuch as that world is smack dab in the middle of one of the busiest cities in the world, I needed a chair that was rugged, had long-lived batteries, and was relatively speedy, lest I get shmushed in the middle of trying to cross Broadway. Okay, I’ll admit that I also wanted a really fast chair because I thought having speedy wheels would be fun (I was correct), but getting around New York City does provide a need for speed. The wheelchair vendor that the insurance company referred me to apparently couldn’t give a damn about my real-life requirements, and insisted on trying to sell me chairs that were completely ill-suited for the task at hand, but were of the type preapproved by my insurance company. In other words, easy money for the wheelchair vendor.

The more I insisted on getting a chair I could actually use, the more the insurance company insisted that I was being unreasonable, and I was soon thrust into the company’s “appeals process”. Well, there was nothing appealing about it. Obviously designed to simply wear a patient down by attrition, the process was convoluted and nonsensical, as each appeal was decided upon by yet another layer of insurance company bureaucrats, thereby almost ensuring a continual string of denials. The entire exercise took on an air of the surreal, as I found myself vehemently arguing for a contraption the idea of which horrified me to no end. And I mean arguing in a very literal sense; phone clenched in my fist as I screamed myself hoarse trying to get my point across. As I generally am not a very confrontational person, it takes a lot to get me to the point of screaming, but the wheelchair madness got to where I would become absolutely apoplectic upon just seeing the name of the insurance company on my caller ID, worked into a lather before even answering the phone. After a full six months, and with the help of my neuro’s social work staff and photos documenting the cracked pavement, construction sites, eight lanes of traffic, and other realities of my urban environment, I was shocked with a phone call telling me that the insurance gods were sated by my burnt offerings, and that my appeal had been approved. Thus, The Wheelchair Kamikaze was born.

I’ve heard countless similar stories of other patients’ battles with their insurance companies, often times over treatments that the patients themselves were scared to death of receiving. Many patients simply give up, something I’m sure the insurance companies count on. They probably have charts and tables accurately predicting just how much corporate cat herding the typical patient will put up with before crying “uncle”. These patients are sick people, dammit, trying to feel better or make their lives easier. Instead of being treated as such, too often it seems the patient is treated as an adversary. Meanwhile, through all of the pleading, arguing, and appeals, the disease continues its relentless march, only heightening a patient’s sense of desperation. I believe this kind of treatment of chronically ill patients falls into the category of cruel and unusual punishment.

It’s not only the insurance companies that complicate the world of chronically ill patients. Insensitive doctors and incompetent office staff too often are the source of consternation, and just about every patient I know tells tales of the frustrations and sometimes sheer anguish visited upon them by folks whose job it ostensibly is to help them. One of the most common complaints are unreturned phone calls, usually placed when a patient experiences a disturbing new symptom or has a serious question about their condition. Let’s face it, not too many people call their doctor to engage in idle chitchat. Yet, getting some doctors and members of their staff to promptly return calls, or even just return them at all, is far too often an exercise in futility. Thankfully, my own primary neurologist’s clinic is an exception to the rule. The office runs a “nurse’s helpline”, on which I can leave a message that is invariably responded to that very same day by an intelligent and empathetic healthcare professional. Unfortunately, I can’t say the same of the constellation of other physicians with whom my condition has forced me to get acquainted, many of whose offices are Bermuda Triangles for phone messages left with office staff.

This lack of response puts patients in the uncomfortable position of either making repeated phone calls and risk being placed in the “pain in the ass” file, or just letting their issues go and leaving them unresolved. Worse still are instances when, out of sheer frustration, patients must take the lead in micromanaging their own care, in effect doing the job of office staffers for them. In the last six months I’ve found myself having to call hospital radiology departments to get the info needed to schedule tests ordered by one specialist or another, and have even had to call medical records departments in order to get test results sent to the ordering physicians, all tasks that should have been handled by the physician’s office staff. If I had waited for the staffers to handle things themselves, though, I fear I would still be waiting. I understand that such staffers are under constant barrage by needy patients, each of whom thinks their problem should take precedence over all others. The stress of dealing with seriously ill people day in and day out must certainly take its toll, but that’s no excuse for people simply not doing their jobs.

At the top of the frustration food chain are physicians themselves.Most are indeed outstanding individuals who take the time to get to know their patients and show a true interest in them as complex emotional beings, and not just broken bodies on which to ply their trade. Others, though, while clinically proficient, are seriously deficient when it comes to compassion and the art of listening. Neurologist horror stories litter Internet MS forums and chat rooms, tales of doctors who seem to place their own interests over those of the patients they treat, brushing off patient concerns with condescension and disregard, often acting as if they are doing the patient a favor by examining and treating them. This can leave patients more befuddled after their appointments than before, a situation that simply should not be. Yes, doctors are only human, and perhaps some patients expect too much of them, but at the end of the day it is the patient who is left alone to navigate the frightening world of chronic illness, a fact that should be at the forefront of every physician’s mind and personal code of conduct.

Yes, being sick can be very hard work. My MS friends tell story after story of almost unbelievable travails within the labyrinth that is modern medicine. Although different countries have different medical systems, it seems every patient, no matter where they live, has their own tale of battling the medical powers that be. Not every physician’s office is dysfunctional, not every doctor is an egotistical ass, and not every medical staff member is incompetent, but there are just enough that are to make being sick sickening. When I “retired” from my career six years ago I had no idea that a new occupation awaited me. Far too often, being sick is a full-time job.

Fear Factor

I'm scared.

There, I said it.

Actually, the word "scared" hardly suffices; I guess "terrified" would more fit the bill. Fear in copious amounts might as well be listed as one of the symptoms of MS. I've talked and corresponded with hundreds of MS patients, on topics ranging from treatment options to conjecture about the nature of the disease to the day-to-day strategies we employ to simply get by, and though it's often unspoken, all of these interactions share one inexorable feature: an undercurrent of fear, at times more prominent than others, but even at its quietest, always present.

Multiple sclerosis is a diagnosis brimming with frightening features. Before getting sick, most of us had only cursory experiences inside the world of modern medicine. We'd get the flu or suffer an injury, make the obligatory trip to the doctor’s office or emergency room, and after a period of days or perhaps weeks our association with doctors and nurses would come to an abrupt and welcomed end, the arc of our lives resuming their previous trajectories. Getting hit with the diagnosis of a chronic and serious illness, though, transforms us from occasional patients to perpetual ones, and throws some nasty curves into the course of our lives. Quite suddenly we are faced with a Pandora's box of terror, which once opened spews forth a never ending stream of reasons to be frightened. From diagnostic tests to treatment options to uncertain futures, we are bombarded with physical and psychological body blows that sometimes literally leave us breathless.

When I was going through the diagnostic process, I expected that at some point there would be answers. Someone would tell me what exactly was happening to me and how to fix it. After all, it seemed that every day, on television and in newspapers, I was delightfully infomed of one momentous medical breakthrough after another, a steady stream of scientific miracles brought forth by the shiny whiz-bang machine of modern medicine. But once I found myself a reluctant resident inside that machine, entangled in it like a fly in a web, it quickly became apparent that despite all of the fancy gizmos and sometimes impenetrable terminology, there wasn't all that much substance to hold onto. Instead of concrete answers I was offered a fusillade of "I don't knows"and "We're not sure's", all delivered in a rather self-assured manner that was completely at odds with what was being said.

Although I somehow managed to maintain an outward demeanor of rationality, inside my mind reeled with the gradual realization that all those people in white coats very often more resembled the gang that couldn't shoot straight than the intricately synchronized and intellectually enlightened medical gurus whose image popular culture had propagated all these years. I felt lied to and cast adrift, not by any individual but by the system as a whole. How else is one supposed to feel when told that the only treatments available for a disease whose cause is a complete unknown were drugs whose methods of action were equally as mysterious. In the parlance of the 21st century, WTF?

Since I have progressive disease, I can only imagine the fears and anxieties that go along with the relapsing remitting flavor of MS, not knowing when going to bed whether or not your body will be functioning come the next morning. Might you wake up temporarily blind? Unable to stand? A quadriplegic? I am intimately acquainted, though, with the unholy terror of watching yourself slowly get whittled away, gradually withering on the vine as, quite consciously, the losses just continue mount. I first noticed a slight limp in my right leg almost exactly 9 years ago. Since then I've looked on in horror as that leg slowly became useless, even as my right arm and hand followed its example. Now my left arm and leg are mimicking their right sided brethren, and though internally I scream for them to stop, they appear to be intent on enacting a repeat performance, like a good child turned bad by a naughty friend. I've already watched this movie once, and I really didn't like the way it ended. Fortunately, when my right side eventually reached the point of complete incompetence, my left side was there to take up some of the slack. Now that the left side is going, well, let's just say that if I don't figure out how to grow another arm and leg, the situation might get a tad bit ugly.

What demonoid could come up with such a disease, a fiendish thing that forces you to watch yourself disappear but then doesn't have the good manners to finish you off? One of my greatest fears as a youngster, having been eleven years old when the film Jaws came out, was being eaten by a shark. Well, now I am being eaten by a shark, only it's invisible, takes its good time, and somehow lives inside me. And it's a hungry fucker, seemingly insatiable. As Sheriff Brody says in Jaws, after catching a glimpse of the huge man eater in the water, "We're going to need a bigger boat!" Problem is, none of the well-intentioned shark hunters in the white coats seems to have a clue as to where I can find myself a bigger boat. In truth, they haven't even been able to throw me a life preserver. There are no known effective treatments for progressive disease, and even the new wave of treatments now available to treat RRMS are rife with the specter of horrific side effects, bringing with them, along with their increased efficacy and hope for relief, all new reasons to be terrified.

I am constantly amazed at the courage displayed by my fellow patients. Faced with a potentially paralyzing disease, and with it a terror that can be just as paralyzing, we persevere, channeling all of that raw emotion into life, wonderful, glorious, crazy, mixed up life. Despite days when the simplest of tasks seems insurmountable, we forge ahead, maintaining whatever semblance of normalcy we can cobble together, constantly making the adjustments necessary to navigate an increasingly difficult landscape. Through the Internet and in person, we reach out to each other, offering advice, comfort, and often just the knowledge that there are others out there like us, dealing with similar hardships and plowing through the dread only a fellow sufferer can know. I've seen the emotions engendered by MS turned into incredible pieces of visual art and tremendously moving poetry and prose, all loudly expressing that we are here despite the fear, and though physically diminished our spirits remain defiant.

Sheer terror can be an energizing force, as the medical world is learning through the tremendously transformational patient advocacy being done on behalf of CCSVI research, a movement whose spirited core is animated not only by the horror of the damage the disease may wreak, but also at a dogmatic medical profession that seems stuck in neutral, unable to give up on theories that are treated as fact despite there being little or no evidence to back them. Faced with terror at what is happening to them and frustration with the inability of anybody to do anything about it, patients are educating and liberating themselves, and by doing so becoming a powerful force of self advocacy. CCSVI may or may not prove to be the turning point we fervently wish for, the jury is still out, but at the very least the patient movement behind the CCSVI tsunami has flipped the traditional patient-doctor relationship on its head, and no longer will patients placidly accept answers that simply don't make sense. It is the terror born of the disease that has emboldened patients, and all of that focused energy has shaken the walls of a medical establishment that too often puts profits ahead of people, a situation that we the terrorized will plainly stand for no longer.

In the end, when faced with a reality that the "healthy you" would have found just about unimaginable, terror is a completely rational reaction. There can be no denying it, and though sometimes it is felt more keenly than others, it is our constant companion, worn as a second skin, permeating all that we do. But terror need not be a solely negative force. As with all things in nature, the darkness of fear is accompanied by the light of courageousness, as is demonstrated every day by those of us who by sheer power of will make it through another stanza in the face of pain, weakness, and frustration, more often than not speaking nary a word of the terror within. Sometimes we cry, sometimes we scream, but most of the time we just go about our business as best we can, and that may be the most courageous act of them all.

CCSVI: Three Years On, Some Thoughts and Observations

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It seems almost incredible, but it's been nearly 3 years since I wrote my first Wheelchair Kamikaze post on CCSVI (click here). At the time of that first post, CCSVI had hardly been heard of outside of some researchers in Italy and a few dozen patients debating the merits of the hypothesis on an Internet forum. Today, CCSVI has become a patient driven social media medical phenomenon. An estimated 25,000-30,000 patients have already undergone CCSVI treatment, researchers from around the world are investigating the hypothesis, and the surgical treatment of CCSVI has become a thriving industry. CCSVI has certainly come a long way, but in many ways we've only taken the first steps on what could be an epic journey.

Last week, the International Society for Neurovascular Disease (ISNVD) held its second annual scientific meeting, which lasted five full days, in Orlando, Florida. A tremendous amount of information about the nature and treatment of CCSVI was exchanged by researchers and physicians, a compendium of which can be found in a 106 page online PDF publication put out by the Society (click here).

Of most interest to patients are undoubtedly the treatment outcomes reported by several CCSVI treatment practitioners (which can be found on pages 62, 79, 83, 84, 86, and 87 of the PDF), which displayed a wide variety of treatment outcomes, but do seem to suggest several identifiable trends. It appears that quality of life issues (fatigue, cognitive issues, heat sensitivity) saw more benefit post treatment than mobility related issues, and that RRMS patients fared better than patients suffering from SPMS or PPMS. None of these studies was double blinded, all being observational and most relying on self-reported information, which can lead to inaccuracies. Still, the findings generally fall in line with some of the few double blinded studies that have been done, such as a recently completed study done in Italy (click here). CORRECTION:an anonymous reader points out that this Italian study was in fact not double blinded, and just used an independent physician to evaluate EDSS scores. Thanks for the heads up.

The meeting did bring into focus the fact that the CCSVI treatment protocol is far from standardized, with physicians varying in opinion on issues ranging from which veins to treat, whether treatment should concentrate on valves rather than the veins themselves, the use of intravascular ultrasound, and other important issues, a list of which can be found on pages 104-106 of the PDF document linked to above. There were quite a few presentations on the use of noninvasive imaging techniques (Doppler Ultrasound and MRV technology) to diagnose CCSVI, with the consensus appearing to be that neither method was especially accurate, except for extremely specialized MRV protocols that are practiced at only a few facilities. One leading CCSVI practitioner went so far as to state that he no longer requires his patients to undergo Doppler Ultrasound investigations before venoplasty, since the ultrasound results were found to be so prone to error (page 63 of the PDF).

In addition to presentations involving CCSVI treatment techniques, some important observations about the nature of the condition were also presented. The effects of reduced blood flow through the brain were discussed, as was the possible connection between bloodflow disruptions and a breakdown of the blood brain barrier, and the role of iron deposition in the MS disease process. In all, my impression (keeping in mind that I did not attend the meeting) is that the findings presented at this year's ISNVD scientific meeting were more evolutionary than revolutionary, which I suppose is something to be expected. The explosion of interest in CCSVI amongst interventional radiologists and research physicians must logically lead to attempts to fill in the many gaps of knowledge that remain in regards to CCSVI, before more dramatic leaps in understanding can be accomplished.

This eruption of interest in CCSVI within the interventional radiology community is in some ways a double-sided sword. On the plus side, it has given patients access to treatment, which in the early days was extremely hard to come by. Today, patients have their choice of treating physicians, and must do their due diligence when choosing which physician in whose hands to place themselves. As noted above, treatment techniques and philosophies vary widely from physician to physician, and patients exploring the possibility of CCSVI treatment should not be shy about asking questions in an effort to find a doctor whose treatment modality best fits their comfort level.

On the potentially negative side, CCSVI has become big business. With CCSVI treatment procedures costing about $10,000, and somewhere between 25,000-30,000 patients already treated, a little math reveals that treating CCSVI has already generated hundreds of millions of dollars in gross revenue for treating physicians. Yes, those procedures covered by medical insurance probably don't get reimbursed at the full rate charged, but this is likely made up for by patients who have undergone multiple procedures because of CCSVI's ongoing problems with restenosis. Given the fact that the number of treated patients represents only a tiny percentage of the worldwide MS population, it's easy to see that CCSVI treatment could quickly develop into a multibillion-dollar a year enterprise.

The David vs. Goliath narrative that has driven the CCSVI story thus far may soon become obsolete. To be sure, the neurology community still remains incomprehensibly steadfast in its negativity regarding CCSVI, but this is becoming counterbalanced by the enthusiasm of the interventional radiology community, and, I suspect, by the interests of the medical device manufacturers, who also stand to profit greatly should CCSVI become an accepted treatment option for MS patients. Despite the fact that very legitimate issues remain regarding the efficacy of CCSVI treatment and the lack of a consensus as to optimal interventional techniques, CCSVI treatment is being aggressively marketed by several US and international treatment facilities, which should raise some ethical questions.

Until issues with effectiveness and technique are satisfactorily answered, the CCSVI treatment procedure must be considered an experimental one, a fact that should not be lost on patients who are understandably desperate to address their illness but are faced with a dizzying array of statistics, patient testimonials, and marketing efforts by for-profit ventures. In a very real way patients who choose to undergo CCSVI treatment at the current time are guinea pigs, a fact that I understood explicitly when I underwent my venoplasty back in the dark ages of CCSVI, almost two years ago. Although we've come a long way since then, in some ways the procedure remains as experimental as ever, as physicians treat a much wider array of veins much more aggressively than they did back when I underwent the procedure. Though the treatment is a minimally invasive one, it is not without risks, as is evidenced by the contingent of patients who have experienced clotting issues and vein thrombosis in the aftermath of their procedures. Indeed, one of the presentations at ISNVD highlighted a patient whose condition worsened after treatment (page 89 of the PDF), a rare occurrence to be sure, but a possibility that must factor into the decision-making process of patients considering venoplasty.

One of the most volatile controversies raging on CCSVI forums and social media sites is whether or not the condition is a cause or effect of multiple sclerosis, with those arguing for CCSVI as cause often citing the fact that the venous abnormalities being found appear to be congenital (developed in the womb) in nature. I am unsure as to the question of cause vs. effect, although I do believe that if CCSVI is a cause of MS, it is only one of many factors involved in the initiation of the disease. Even if the vascular defects being found in the veins of MS patients are congenital, this does not necessarily mean they are a cause of multiple sclerosis. There are many congenital defects that cause no adverse effect whatsoever, and I'd venture to say that many of us have some physical trait somewhere in our bodies that is outside of normal variance.

We've all heard stories of world-class athletes suddenly collapsing during or directly after extreme physical exertion. Quite often, the follow-up story is that the unfortunate athlete was a victim of a congenital heart defect, which would never have been noticed had that person not pushed his body to physical extremes. Had they not been athletes, they very well could have lived a normal life span. Likewise, a person born with congenitally abnormal ligaments in their knees might never know of their condition unless they encounter an environmental element (such as a hit to their knees) that brings their abnormality to the fore, in the form of a knee injury more severe than that which might have been suffered by a person with "normal" ligaments. Given the varied elements that have been linked to MS (infectious agents, exposure to toxins, vitamin deficiencies, genetic markers, etc.), a likely scenario is that vascular abnormalities play a part in predisposing an individual to developing MS when exposed to an unfortunate storm of other factors.

To my mind, it is becoming increasingly clear that, despite our greatest hopes, CCSVI is only a part of a much bigger and more complex MS picture. Precisely how big a part it plays is still open to question. Although CCSVI treatment does appear to benefit many patients, it has also been shown to be of little or no value to many others. CCSVI does not explain some of the factors that have previously been established about MS, such as the geographic distribution of the disease (click here), the male-female ratio that is well known to exist in MS (click here), the existence of "multiple sclerosis clusters" (which would seem to point to an infectious cause-click here), or the unmistakable link between MS and Epstein-Barr virus (click here). Nevertheless, CCSVI offers the promise of opening up whole new areas of research into the causes of, and treatments for, multiple sclerosis. Certainly, interested MS patients should investigate the possibility of CCSVI treatment, and make a sober assessment as to whether now is the proper time for them to jump in.

There are several ongoing research projects that should further illuminate the CCSVI picture scheduled to publish results later this year, but further robust and expeditious research is desperately needed. It is essential that we ascertain just how prevalent CCSVI is in the healthy population, gain a better understanding of the role, if any, of vascular abnormalities in the MS disease process, determine which MS patients respond best to CCSVI venoplasty, refine the techniques used to treat CCSVI, reduce the number of patients who experience restenosis, and see the development of surgical implements specifically designed to treat venous abnormalities. Neurologists need to get on board to provide interdisciplinary expertise to CCSVI studies. After all, whatever the results of the research, positive or negative, answering these questions can only be in the best interest of their patients.

CCSVI has come a long way, but there is still a long way to go. Thankfully, the pace of CCSVI research is gaining momentum, and hopefully we will see answers to many of our questions sooner rather than later. In the meantime, my best advice is to educate yourself to the best of your ability, be your own most powerful advocate, and make treatment decisions based more on reason than emotion.

You Can't Be Too Strong

One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.

Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.

Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.

I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.

Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!

The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.

We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.

In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it  through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?

Honestly, you can't be too strong…

A Patient's Perspective on CCSVI, in Words and Pictures (Part One)

On July 15, 2011 I was honored to give a presentation at the Patient Information Day of the Second Annual CCSVI Update Symposium, held at the Crowne Plaza Hotel in Times Sq., New York City. The organizer of the symposium, Dr. Salvatore Sclafani, asked me to write an essay for oral presentation on "A Patient's Perspective on CCSVI", using some of the photographs taken from my wheelchair mounted camera to illustrate my talk. This was a challenging proposition, since none of my photos were taken with MS or CCSVI in mind, but the presentation turned out well, and I was not pelted with rotten vegetables or garbage, as I feared. I'll post the resulting essay here in four parts, spaced a few days apart. Here's part one:

This photo is of an abandoned structure on the Manhattan side of the Hudson River, known as the 69th St. Transfer Bridge. Built in 1911, during its heyday, when Manhattan's Riverfront was teeming with industrial activity, the structure was used to transfer railcars onto barges for trips to freight ships or across the Hudson to rail lines in New Jersey. It is now listed on the National Register of Historic Places.

I've long found this derelict structure to be captivating, and have often felt a sort of kinship towards it. Like me, the transfer bridge once stood tall and strong, hard-working, perfectly in sync with the beehive of action that surrounded it. Now wrought immobile by rust and decay, the transfer bridge is a stubborn old beast, still able to grab attention in spite of its diminished state.

Like many of my MS brothers and sisters, I too can no longer function as I once did. Instead of rust doing its insidious damage to the hard steel of the bridge, a mysterious disease process now does ongoing injury to the all too soft tissues of my central nervous system, creating neurologic deficits that in eight short years have left me spending much of my time sitting in a wheelchair. But, like this structure, I too refuse to go quietly into the night, and hope, through words and images, to at the very least give voice to the stresses, frustrations, and emotions that come part and parcel with having a progressively debilitating chronic illness. In my fellow patients, I've met countless individuals whose guts, courage, and spirit inspire me, and whose determination to live fulfilling lives in spite of the disease should serve as lessons to us all, sick and healthy alike.

Of course, this photo not only depicts the long abandoned transfer bridge, but also rays of sun light bursting through a threatening cloud bank, daggers of illumination cutting through a potential source of gloom. These rays of light are akin to Dr. Zamboni's CCSVI hypothesis, giving hope to a patient population searching so desperately for answers. Despite the incremental advances made in treating the disease over the last decade or so, MS has remained a maddeningly elusive target, its victims left to choose among an array of drugs which, in varying degrees, all carry with them the risk of serious downside, and none of which offers a cure.

The source of hope called CCSVI has burst through this haze of confusion and energized MS patients worldwide, like starved seedlings suddenly exposed to a sunny day. Although still early in the game, the very promise of CCSVI has beckoned patients to organize and educate themselves, and to ask questions that were in dire need of asking.

By shaking up the status quo, CCSVI has already won a tremendous victory, and the hope it has given to many is nothing short of a blessing. But in assessing the full impact of CCSVI, we must also be careful not to be blinded by these same bright rays of hope, as investigations into CCSVI, and the methods to treat it are still in their infancy, and the full impact of the hypothesis has yet to be determined. Certainly, we have seen the CCSVI treatment procedure help many patients, sometimes dramatically, but we have also seen it be less than effective for a substantial number of those who have undergone it. In fervently desiring CCSVI to provide answers for all, we must guard against hope eclipsing reason, and understand that there is still much to be learned.

Click here for part two

On Friends, Old and New

Image via Wikipedia

"People come and go, and forget to close the door, and leave their stains and cigarette butts trampled on the floor, and when they do… Remember me, remember me"

-Brian Eno

There are several phrases that when heard or uttered can forever change the course of a life. "You're hired", "I'm in love with you", and "I do" are a few of the more common, all imbued with the power to positively alter one's destiny. On the flipside, there's a multitude of words that, when strung together, can have a negative, even dreadful impact. Those of us dealing with serious illness have all heard variations on the same devastating words streaming from a doctor's mouth, something along the lines of, "I'm afraid you have (insert name of illness here)". From the moment those syllables are comprehended, we are suddenly singled out, set apart from the world we inhabited just moments before, the land of the well.

No matter how loved or popular the recipient of such a diagnosis may be, they've now been forced into a new and alien social strata, that of the chronically ill, an exclusive club to which nobody wants to be a member. Though friends and family offer heartfelt and genuine gestures of comfort and sympathy, there is simply no way for them to truly understand the disorientation, fear, and alienation wrought by the verdict recently rendered. The newly minted patient, even if surrounded by a crowd, is left to navigate a frightening new reality in large part alone.

Make no mistake, the support of friends and family is vital to the mental and physical well-being of a newly diagnosed patient, but that moment of diagnosis does serve as a line of demarcation between an old reality that was very likely taken for granted and a new one fraught with uncertainty. This crisis point in a person's life can test old relationships, and unexpectedly offer opportunities to build new ones.

Over the course of a lifetime, there is a natural ebb and flow of individuals entering and exiting a person's world, an ever shifting population of friends and acquaintances that inevitably changes with the passage of time. A precious few of these people take up permanent residence in the timeline of life, and transcend friend to become family. True family is defined more by love than by blood, and I consider myself blessed to count among the innumerable persons I've encountered perhaps half a dozen who I know will be constants for the whole of my life. We may not be in perpetual contact, in fact we may not talk for months at a time, and perhaps not meet in person over stretches lasting years, but I am secure in the knowledge that when push comes to shove, no matter the situation, we'll always be able to pick up just where we left off, our bonds too strong to be broken by the strains of time, distance, or circumstance.

These rare relationships, some of which have spanned decades, are cherished and acknowledged as precious, for I realize they link me not only to people that I hold dear, but also represent a tangible connection to my own past, confirmation that what came before was not merely a dream, but a series of very real experiences that I was lucky enough to share with some special individuals. Though I've only been diagnosed for eight years, at times it's hard to remember a life without illness, a time when I was blissfully ignorant of most things medical. These friends turned family, who are of course deeply sympathetic to and aware of my difficulties, look straight past the fact of my illness to the essence of who I am. To them I will always be the same old Marc, and for that I am forever grateful.

Other friendships from my healthy life have been diminished by my illness, really at no fault of the people involved. Many friendships thrive primarily on a continuing series of shared social experiences, and as my disabilities have mounted and my ability to socialize has become curtailed, the spigot that fueled many of these relationships has been turned off. Phone calls and e-mails are still occasionally exchanged, and halfhearted motions are made at making plans to get together, but they almost never actually come to fruition. That's okay, really, as without an ongoing narrative, some relationships are bound to simply stall, and eventually wither. It's all part of the rhythm of life, the natural order of things.

In this age of the Internet and social networking, it's now quite common to reestablish connections with folks who once populated your world, but were long ago got lost to the ever shifting tides of time. I've found that most of these renewed friendships at first burn brightly with shared memories and updates on current circumstances, but once that initial flame is exhausted, they again recede into a state of benign neglect. A few, though, have turned out to be very happy and lasting reunions, with people for whom I never really lost affection, but only lost touch. It is a real joy to rediscover a misplaced but valued friend, like unearthing a buried treasure.

In all honesty, though, my illness has made me somewhat reticent to pursue some of these Facebook friendships, as I sometimes think I'd rather be remembered as the youthful and healthy me locked in my old friend's memories, and recounting the details of life since my diagnosis hardly makes for a lighthearted exchange of pleasantries. Perhaps this accounts for my almost phobic relationship with Facebook, which I suppose it's time I should just get over. I'm completely open about my illness with the world at large, after all, but somehow the prospect of detailing my saga to certain individuals remains daunting. Though I feel I've handled the emotional upheaval attached to illness quite well, I suppose the pain of my reality lies not too deeply beneath my Wheelchair Kamikaze persona.

Despite the love and support of family and trusted old friends, it's been incredibly important for me to develop relationships with fellow patients, others who simply "get it". As kind and sympathetic as the well people close to us might be, they just haven't lived the situation, and thus don't have the capacity to fully gauge the true measure of being chronically and progressively ill. It's like trying to get a blind man to understand the difference between blue and orange, the complexities are beyond words.

I can't imagine how difficult it must've been for patients dealing with chronic illnesses before the advent of the Internet, how isolated and alone so many must have felt. Soon after my diagnosis I discovered some of the Internet MS forums, and in them found a haven where was able to interact with others dealing with many of the same questions, fears, and emotions that were roiling inside of me. I derived incredible comfort and relief in these virtual worlds, populated by so many who had gone through situations similar to those that now confronted me.

I initially ventured onto these forums seeking only information, never imagining that I might find real friendship in the coldness of the words of strangers on my computer screen. But soon the anonymous screen names of those participating took on the characteristics of the living, breathing human beings behind them, and the catharsis of being able to commune with fellow patients was incredibly therapeutic. Before long it felt like some of my best friends were people I'd never actually met or even talked to. When I did eventually have the opportunity to meet some forum members in person it often felt as if we'd known each other for years, unencumbered by the awkwardness of unfamiliarity that usually accompanies first encounters.

Of course, not every MS patient is going to become a close friend, but I found that the shared emotions of dealing with a serious diagnosis can often strip away much of the artifice and posturing that goes on in every day social interactions, and patient to patient we can often cut right to the chase and dispense with most of the meaningless trivialities that get in the way of establishing the bonds of true friendship. I've developed heartfelt relationships with people I might not otherwise have interacted with, folks in locations and with backgrounds that I might never have crossed paths with or given a chance to without the unfortunate commonality of a shared disease.

When eventually we take our leave of this earth, as we all must, the friends we've made and the people we've touched are perhaps the truest measure of the lives we've led. Despite the hardships imposed by disease, and the impersonal nature of the medical world we've been forced to inhabit, we must never lose sight of our essential humanity, and relish and take joy in our close friends, old and new. Even in this high-tech world of instant messaging, Facebook, and tweets, a pat on the back, some gentle words of kindness, and an earnest gesture of support still convey that most important of human sentiments, genuine affection for those we are lucky enough to call friends.

The Frustration Machine

Image via Wikipedia

I recently posted a piece titled "Surfing an Emotional Tsunami", in which I talked about the overwhelming torrent of emotion that comes bundled in the Multiple Sclerosis package (click here) . One astute reader commented that I had left out a very important feeling with which he often saw his MS stricken wife struggle: frustration. And, of course, he was absolutely right. The more I thought about it, the more it became clear to me that frustration plays such a large role in the experience of MS patients that it deserved a post of its own. MSers experience frustration on so many different levels that it's presence can almost be taken for granted, like the air that we breathe. Unlike life-giving oxygen, though, frustration can be suffocating, and in fact can be the seed of many of the other negative emotions that plague MS patients: fear, anger, guilt, desperation. Frustration strikes on many fronts, and MS patients battle it in its myriad forms over and over each and every day.

The disease itself frustrates all that it touches; patients, their loved ones, and the doctors who tend to them. The infrastructure that has grown up around the disease, a multibillion-dollar a year engine for which MS is the fuel, generates its own set of gargantuan aggravations. And the world itself, in which an increasingly disabled person can start to feel more and more alien, holds perhaps the most implacable frustrations of them all.

Let's start within the patient, and work our way outward. Upon diagnosis, patients are told that we have an incurable disease (frustration of the terrifying variety) that, despite over 150 years of research, medical science barely understands (mind-numbing frustration). Our immune systems for reasons unknown have gone on the fritz, we are informed, and have become cannibalistic, slowly devouring our own central nervous systems (petrifying frustration). The more questions we ask, the less clear the picture becomes, and as questions beget questions, the mind begs for answers that simply aren't there (intellectual frustration). We are trapped in a medical Rubik’s cube, and despite decades of endless turning and twisting, the goddamned colors refuse to line up.

As the disease progresses, its attendant frustrations, often suffered in silence, progress right along with it. The nagging disturbance of a numb or weakened limb slowly morphs into the outright horror of a once faithful leg or arm that has become totally dysfunctional, more a hindrance to be overcome than the helper that it used to be. The frustration I feel when I am forced to use my still functional left arm to physically place my now useless right arm into some out of the way position is indescribable. Despite my never-ending attempts at ferociously willing the damned thing to move, that arm becomes ever more and more unresponsive, as if it were part of a corpse grafted onto my body.

As physical dysfunction spreads, no amount of willfulness is able to impede its momentum. The frustration involved in watching oneself whither away is simply beyond words. When medical science first recognized MS as an identifiable disease, one of the earliest names given to the condition was "Creeping Paralysis", a discomforting label to be sure, but one that much more accurately describes its horrors than any of the medical jargon now used to conveniently camouflage the realities of Multiple Sclerosis. Million dollar words like spasticity and paresis do nothing but dress up in ludicrously antiseptic scientific jargon the fact that I can't move my fucking arm or leg. I'm not a case study in a scientific paper, I'm a human being with creeping paralysis. Frustration…

Each of the physical losses inflicted by the disease frustrates the execution of everyday tasks that in the past never even warranted a second thought. I very often find that my losses reveal themselves in the countless simple acts that it takes just trying to get dressed and out the door. Can the word "frustration" even begin to describe the emotion I feel when I discover that some of last year's difficult tasks have now become damn near impossible? When last December's barely winnable struggle to put on my right sock has now become an unworkable nightmare? When such inconsequential modern conveniences like the zipper on my favorite leather jacket have suddenly been transformed into infernal devices seemingly designed specifically to illustrate just how brutal a toll this disease has taken on my body? Certainly, there must be a mightier word, but for now frustration will have to suffice.

For those who love and care for us, watching the disease’s effects from the outside in is its own particular brand of torture. Though I don't have any children, I can only imagine the helpless anguish a parent must feel watching their child struggle with the disease, no matter the age of the parent or the child. The only personal experience I have that might begin to compare would be the gut wrenching desperation I felt as my beloved Labrador Retriever Stella (click here) succumbed to cancer. Though I know such a comparison might make a mockery of the parent-child bond, it's the closest I can come, and at least I could take some comfort in the fact that my canine friend had lived a relatively normal life span. But there can be no such comfort for a parent watching their adult child, the essence of their own flesh and blood, gradually become diminished. Can a young son or daughter's immature mind even process the sadness, anger, and frustration of having a dad who can no longer play catch, or a mom who needs to be mothered? And those spouses who decide to stick by our sides, dauntless spirits all, navigating the treacherous path laid out by MS, not out of necessity but by sheer love and devotion, how to define their courage? I've been given no other choice but to follow this road, but for my wife Karen exit ramps abound. And yet, by the grace of all that is good, she remains. Somehow, she remains.

Conversely, the frustrations felt by those who love us can in turn incite yet different shades of that same emotion deep within we who suffer from the disease. Despite mutual attempts to shield each other from the hurt, it's plain to see that our physical and emotional pain is causing those we love distress, and like the chain reaction that generates an atomic blast, frustration from all sides collides and mutates, simultaneously leaving too much said and too much unsaid, for the region between "dwelling" and "denial" is narrow and almost impossible to navigate. Every day small talk can become unbearably trivial, yet speaking of nothing but disease is poison for the soul. Phone calls from the concerned can come too often, or not often enough, and social invitations become objects of synchronized dread and delight. Yes, I would love to meet you at the café for coffee, but there is this thing about the zipper on my coat, and I don't know if next Tuesday will be one of those days that I'm simply too tired to get out of bed, and if it rains my wheelchair becomes as useful as an anchor. Frustration…

Many times simply being a member of the human race in a world that naturally caters to the well can conspire to frustrate at every turn. I flip on the television and see commercials hawking products that not long ago might have filled me with consumerist desire, but now are almost comically useless to me. What am I going to do with a shiny new Jaguar? Watching a sporting event and marveling at the incredible physical talents of the athletes involved, I sometimes can't help but reflect on the fact that the man making that impossible catch is doing it with far more ease than my increasingly futile attempts to simply put one foot in front of the other. Lovers delightfully snuggling on a park bench, that business suited jackass blindly walking through a crowd oblivious to everything but his blackberry, the single eight inch step that keeps me out of countless shops and restaurants, the everyday problems with office politics and petty relationships that so consume the healthy but, through the lens of far greater troubles, have now been revealed to be nothing more than trivial distractions. Frustration. Never-ending, unrelenting, heartrending frustration…

On an entirely different plane are the frustrations large and small of becoming trapped in indentured servitude within the universe of modern medicine, as a chronically ill patient must be. It didn't take all that long for me to go from being blissfully ignorant about some faraway malady called Multiple Sclerosis to the shocking realization that the gleaming miracle machine commonly presented as 21st-century medicine is simply a tremendous ruse. Despite all of its high-tech wizardry and and the considerable brainpower of its highly trained physicians and healthcare practitioners, modern medicine is first and foremost a fantastic engine for generating astronomical wealth for a gaggle of corporations, often at the expense of the very patients it purports to benefit. In many ways it's a money machine that feeds on sick people. Multiple Sclerosis, because it has revealed only enough of it secrets to make its treatment a highly profitable endeavor, is almost the perfect disease to unmask the sleek veneer of modern medicine and reveal the unsightly leviathan within.

For those "lucky" enough to have one of the more treatable forms of the disease, the medicinal remedies offered make all too real the expression "pick your poison". None of these medicines do anything at all to address the still unknown underlying cause of Multiple Sclerosis. Instead, by modulating or suppressing the intricate and poorly understood human immune system, they temper the paralyzing attacks suffered by those with Relapsing Remitting Multiple Sclerosis, without doing a damn thing to cure them.

These drugs do increase the quality of life of many of those taking them, as fewer relapses certainly make for a more pleasant existence, but at best the evidence shows that they may slow down the eventual progression of the disease, but they certainly don't stop it. As an added kicker, all of these medicines carry with them troublesome side effects. The least effective "Disease Modifying Drugs" commonly make those taking them suffer from "flu-like" symptoms, which, roughly translated, means they make people feel like shit. Better to feel like shit then suffer from paralyzing MS relapses, but certainly no panacea. Furthermore, these drugs only help about one third of the people taking them. How's that for frustrating?

The newer, more effective (and more costly) drugs profoundly impact the workings of the human immune system, and carry with them the possibility of some terrifying side effects, including brain infections and cancers. None are ever trialed for more than two or three years, so their long-term effects remain unknown, but patients are expected to rely on them for a lifetime. What affect will disabling half of my immune system have in five or 10 years? Well, we don't know, but just sign on the dotted line and let's hope for the best. Frustration…

Those like me, with the progressive forms of the disease, who don't suffer "attacks" but instead experience a slow and steady decline, are left with the choice of doing nothing, practically assuring a gloomy outcome, or partaking of the above-mentioned remedies, with little hope of experiencing the benefits realized by the folks who suffer relapses. Since I personally find the idea of doing nothing anathema, I've subjected myself to the full gamut of therapies and concoctions offered up by modern medicine, despite the knowledge that chances are they would likely do me no good. Indeed, this has been the case. I've received no benefits from these shots in the dark, and rather than simply do me no good, some of them have actually worsened my condition. Frustration, self doubting, 20/20 hindsight frustration…

And now we have the hope of CCSVI, the so-called vascular theory of MS. After decades of largely fruitless research focusing on the immune system, there comes the stunning revelation that abnormalities in the veins that drain the central nervous system may play an integral part in the MS disease process, and perhaps might even be the long-sought cause. Even if not the cause, anecdotal evidence suggests that at the very least, the clearing of these abnormalities through the use of a relatively simple, minimally invasive surgical procedure may relieve some of the symptoms borne by those with the disease.

Instead of the eager cooperation one might expect to find between the various medical disciplines required to fully test the theory, we get an eruption of the equivalent of a medical food fight, with researchers, physicians, and politicians brawling over how and even whether to test the hypothesis. Patients, at last energized by an intoxicating dose of hope, are caught in the middle, looking on incredulously as academic and bureaucratic arguments delay the relatively simple trials that would be needed to prove or disprove the theory. If there were pharmaceutical fortunes to be made from CCSVI, you can bet your ass that sophisticated trials would have commenced long ago. But no, corporate profit potential is lacking, and so it has been left largely to the patients themselves to foment what could be a medical revolution. Frustration. Angry, seething frustration…

How to deal with the many hued variations of frustration met by those dealing with Multiple Sclerosis? If only there were an easy answer, a meditation or incantation that would simply make it all fade away. But no, we must be steadfast through the storm, letting neither the past nor the future cloud our experience of the present. All of the emotions engendered by Multiple Sclerosis, frustration included, give every one of us dealing with the disease the perfect right to curl up into a ball and bemoan our fates in a deserved orgy of self-pity. And perhaps it's best that on rare occasions we allow ourselves to do just that, to let loose with a guttural wail of anguish. But for the vast majority of the time, we must steel ourselves to take control of our emotions, to experience each day moment by moment, making the numberless conscious decisions that allow us to not only survive but to thrive in the face of undeniable and treacherous adversity. We must not deny ourselves the right to contentment, for contentment and even happiness must be created by every individual from within, attained by a total immersion in the moment, and finding that small kernel of good always contained in the now. We cannot deny our feelings, but we can work with them to discover our own very personal sense of ease, frustrations be damned.