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.

Surfing an Emotional Tsunami

Image via Wikipedia

Dealing with a chronic illness like MS is a multifaceted affair. There's the physical side of things, each patient having to tackle their own particular hodgepodge of the wide range of symptoms in the Multiple Sclerosis repertoire. Cognitive dysfunction, fatigue, sensory issues, muscle weakness, spasticity, neuropathic pain… the list is almost endless, or at the very least can certainly feel that way. Many of MS's physical manifestations have some sort of medical remedy, with varying degrees of effectiveness, most often in the form of a pharmaceutical product. There's Baclofen for spasticity, Neurontin for pain, Ampyra for muscle weakness, Provigil for fatigue… again, the list seems endless. For the pharmaceutical companies, at least, MS is the gift that keeps on giving. For those afflicted with it, though, MS is the gift that keeps on taking. Most of the MS patients I know have a veritable pharmacy in their medicine cabinets. The amount of pills I take each day is almost comical. Almost.

The frequently veiled side of MS is the psychic beating it inflicts on its victims. Being hit with a chronic illness provokes a roiling ball of confusing and sometimes conflicting emotions within a person, so much so that these emotions can often be as overwhelming as the outwardly apparent physical symptoms of the disease. The emotions stirred are many layered, some obvious, and others less so. There are pharmaceutical remedies for some of these ills, too, of course, in the form of antidepressants, anti-anxiety meds, and the like. Speaking from experience, some of the drugs prescribed by those in the psychiatric profession are quite good at relieving freeform angst and anxiety, but I don't think they're all that effective at putting a dent in the emotional maelstrom stirred up by a disease that forces many of its victims to cope with the prospect of literally watching themselves whither away.

Strangely enough, my getting MS seems to have cured many of the neuroses that I struggled with in my physically healthy days. Back then, I was quite the world-class neurotic, at times capable of making Woody Allen seem well-adjusted. I never really suffered from depression, per se, but from anxieties that could sometimes be overwhelming, on occasion leaving me almost totally incapacitated. Some of these anxieties were triggered by genuine emotional traumas, such as the breakup of a relationship, or some other major life disappointment. Others, though, were harder to fathom, such as the acute anxiety I felt whenever a plate of pasta was put in front of me in a public place. No joke, a big helping of linguine with white clam sauce served to me in a restaurant was enough to make me hyperventilate and fall off my chair. Many years of psychotherapy and the use of a very effective medication helped me carry on despite myself, but I never could quite rid myself of my finely hewn neurotic behaviors. I made efforts to get hold of my emotions and rein them in, but more often than not, my emotions stood triumphant.

Once I was diagnosed with MS, though, most of my vast array of angst ridden tendencies were somehow exorcised. It was as if the Universe said, "You want something to worry about, schmuck? Instead of fretting about fettuccine, here, chew on this…" Suddenly, I had something very real to agonize about, and from this new and dreadful perspective the founts of my old fears appeared to be quite insignificant. Not that I wasn't initially completely freaked out by my diagnosis; I most certainly was, but having an identifiable trigger for this onslaught of emotions made them easier to gain control of, and made most of my previous concerns seem quite trivial in comparison.

I eventually discovered that the key to gaining some emotional command, even when the very foundations of my existence seemed to have been pulled out from under me, was sorting through the jumble of feelings engendered by my diagnosis and dealing with each one individually. When the mind twisting stew of painful emotions remained intertwined, their burden seemed insurmountable, but when I made an effort to untangled them, and to identify and address them individually, I found that I could create some measure of peace within.

Some of what I was feeling was easy to name. Fear took the forefront, but there was also anger, confusion, self-pity, and regret. I was fearful of what the disease might do to me, and of the head spinning medical world I was now being forced to enter. I was angry at just about everything, the doctors who diagnosed me, the disease itself, all the incredibly lucky bastards walking around in hale and hearty health, completely oblivious to their good fortune, and basically at the whole fucking suddenly upside down universe. I was confused about what exactly Multiple Sclerosis was, the strange new jargon attached the disease that would soon become a big part of my daily lexicon, and how sickness could invade the illusory fortress of my everyday existence. I pitied myself for being singled out for disaster, and for the future I had imagined but now seemed forever lost. And I regretted many of the choices I made when healthy; not so much the things I did do, but those that I didn't, and would likely never have the chance to do again.

Some of these feelings were easier to relieve than others. I confronted fear and confusion by almost obsessively educating myself about everything MS. I devoured every word I could find about the disease, rooting out esoteric tidbits of information from whatever sources I could uncover. As with all things in life, fear of the unknown is far greater than fear of the known, and I was determined to know, intent on staring even the most unpleasant facts about the disease squarely in the eye. Anger slowly subsided as I realized the futility of being angry at everything and nothing, as there was no identifiable culprit to focus my fury upon. The truth is, sometimes the anger still bubbles up, but I've learned to allow myself to feel it without letting it consume me. Self-pity got old quickly, as even though I might be a victim, that didn't give me license to wallow, with time now suddenly such a precious commodity. Instead, attack became my operational mode. Regret, I think, has been one of my hardest emotions to wrangle, as in many a quiet time I find myself drawn into contemplating all of the roads not taken. Would they all have eventually lead to MS, or would some of the paths that I'd left untrodden have circumvented this fate? Impossible to know, of course, and the variables seem endless, a latticework of converging and diverging fortunes.

Recently, I've come to recognize yet another emotion birthed by the disease, one that I have at times openly expressed, but never put a name to: guilt. Throughout this whole experience, underneath the louder and more histrionic emotions, guilt has resonated in a low but steady hum. Completely illogical, I know, as I didn't choose to get MS, but there it is, nonetheless. MS has an insidious and wicked gravity. At the disease's epicenter is the patient themselves, but its destructive influences radiate outwards, touching all who orbit the afflicted. MS doesn't only distress the person unfortunate enough to suffer from it, but all those around them as well, friends and family who are left helpless to watch their loved one struggle with a relentless enemy.

My wife and I were married only one year at the time of my diagnosis; gone were our happily dreamed of journeys to Pompeii or Tuscany, replaced instead by trips to medical facilities and doctor's offices. In addition the husband-and-wife, we've now become patient and caregiver, and although we said "I do" to the words "in sickness and in health", we never had an inkling of the impact with which sickness would soon slam us. My illness has caused endless worry to my family members, and especially to my mom, who has her own struggles with diabetes and Parkinson's to contend with. My friendships have also borne the strain of the illness. I have learned that family is in many ways defined more by love than by blood, and I'm blessed to have a handful of friends who long-ago eclipsed the boundaries of that title. They too have been stricken by my MS, and though we all do a marvelous job of playing make believe when we get together, it's impossible to ignore the realities of my situation.

I've always considered guilt to be one of the most worthless of emotions. Its only purpose is to teach those feeling it to never again commit the act that brought on the reaction. Unfortunately, many of those who most deserve to be shackled to an anchor of perpetual guilt seem oblivious to the emotion, and continue to repeat their offensive behaviors again and again. Liars lie and cheaters cheat, and though some may loudly profess the guilt they feel, their actions always prove otherwise. Once a person accepts repugnant behaviors in themselves, guilt is completely taken out of the equation. People sensitive to guilt generally live admirable lives, not so much because of the specter of guilt, but due rather to fully functional moral compasses.

Yes, MS provides challenges aplenty, both physical and emotional. The physical challenges tend to attract the most outside attention, and can be addressed, with varying degrees of success, by a multitude of physicians. The emotional pitfalls of the disease, though, can only be navigated by the patients themselves. Even a trained counselor or therapist can only help nudge the patient along the trail to self-awareness.

I've discovered that kindness to self is a powerful medicine. Strangely, many find it much easier to be kind to others, even strangers, than it is to be gentle to themselves. The emotional tsunami created by a disease like Multiple Sclerosis provides plenty of instruments for self torture, and though the feelings produced should not be ignored, they must not be embraced, either. The key is to acknowledge each emotion as a natural response to a terrible circumstance, allow yourself to feel it fully, and then show it the door. Our emotions are products of our own psyches, after all, and with practice and fortitude we can learn to control our creations. It's never easy, and as the disease progresses the degree of difficulty increases still, but as with any exercise, the more it is worked on, the easier it becomes. As Shakespeare wrote, "to thine own self be true", some of the best advice ever penned. If I might be allowed take such liberties, to the Bard's words I'd like to add, "to thine own self be good"…