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.

The Long View

In the past, I've written much about the need to break down the potentially overwhelming tide of emotional and physical strain that comes part and parcel with chronic progressive illness into smaller, more easily navigated bits, by living in the moment, consciously creating your own reality, and sorting existence into manageable servings. Depending on the amount of crap being shoveled your way at any given time, this can mean taking it day-to-day, hour to hour, minute to minute, or sometimes even second to second.

Of course one can't help but look forward occasionally, as it's quite necessary to do so in order to plan treatment strategies and live your life wisely, but for the most part staying rooted in the now allows a person to fully experience all the good that each fleeting moment has to offer, and not let precious time slip from their grasp while the mind is focused instead on a past that can't be changed or a future that can never accurately be divined. As my disease has progressed, I've found my attempts to fully occupy the present have become more difficult, even as they simultaneously become all the more vital. Efforts at mental discipline and maintaining clarity of mind are rewards unto themselves, though, and without them I very well might have gone barking mad years ago.

Throughout my life, I've often found comfort in a different strategy, one that instead of attempting to untangle life's complex web of emotions and circumstances and break them down in order to escape their snares, tries to take a bird’s eye view of things, understanding that my life is of relatively tiny significance in the context of the long view of human history, and tinier still as part of a cosmos so complex that it is literally beyond the limited powers of our understanding. It may sound a little morbid, but even back in my healthy days I found nothing so affirming as visiting old cemeteries, peering at headstones bearing the names of people long forgotten, trying to imagine the distant lives of those in the ground whose secrets were forever lost to time.

I spent a lot of time in New England back then, a region of the country peppered with graveyards dating back centuries. Gazing at weathered stone markers chiseled with names and sets of dates tells you almost nothing about the people they were meant to memorialize, other than the gender of the dead and the span of their lives. Yet each engraved stone represents the richness of a singular human life, one that was once filled with dreams and desires, failures and triumphs, moments of great heartbreak and also those of buoyant joy. Despite that cacophony of the assembled experiences and emotions that make up the sum of a lifetime, now there is nothing but silence, just the barest of reminders that a person whose name had not been uttered for perhaps hundreds of years had once graced this ancient earth.

When I lived in South Florida, back in the 90s, I developed a very close relationship with my paternal grandmother, a woman with a larger-than-life personality who had the unusual ability to be incredibly endearing and tremendously maddening all at the very same time. She was extraordinarily generous to those she loved, but nursed wicked grudges over perceived slights and insults that were decades old. When one of her perceived nemeses passed away, she was always quick to chime in with a "May they rest in pieces!"

I tried to have dinner with her about once a week, and very few of those meals were ever boring. Over the course of the roughly 10 years I lived in the Sunshine State, I amassed enough stories involving "Grandma Smaidee" to fill a novel, one which I really should write. My grandmother's emotions knew only one speed, pedal to the metal, and she enjoyed good food and good booze. She had the heart of the lion but at times could be tremendously timid, and was one of the least self-conscious people I've ever known.

Of all the things she loved and valued, chief among them was beauty, in objects as well as people. A great beauty herself, it was truly difficult for her to understand that beautiful people were not always  as attractive on the inside. When I once told her that a particularly winsome girlfriend of mine had cheated on me, she just about refused to believe it, and when I finally convinced her of the fact, she told me it was my own fault for going out with a shiksa (yiddish for a non-Jewish woman). That my head didn't explode at that moment can only be testament to the thickness of my skull.

My grandmother died in 2006, and as I had become so close to her, the family decided to leave it to me to choose the inscription on her gravestone. She was buried in a family plot, so she didn't have a traditional headstone, just a small stone marker on the ground which didn't allow for many words. All of those around hers said things like "loving husband, beloved wife, cherished son”, etc. They conveyed nothing of the actual person who was buried 6 feet below, and might well have read "generic human being". After giving it much thought, I decided her inscription should read "She Walked in Beauty…”

I'm not sure if she'd be delighted or incensed with my choice, but I imagined that 50 years hence, someone walking by might notice that my grandmother's marker was different than everyone else's, and pause for a moment to think about what kind of woman might inspire those words.

Though we all occupy the center of our own individual awareness of the universe, in which the circumstances of our lives take on seeming momentous import, the reality is that in 100 years the planet will be populated by all new people, and except for a very few of us, in 2112 none now living will even be remembered. Sure, our names may occupy a place on some antique census list or on someone's family tree, but the essence of who we were, all of the majesties and follies that made us human, will have long been forgotten. Given that fact, how downright silly it seems to take ourselves as seriously as we often do, as if our trials and travails have any meaning beyond the small span of time that we happen to inhabit in the long march of humanity.

Faced with this ultimate truth, allowing misery to snatch any of the scant few moments granted us seems quite foolish indeed, whatever pitfalls and traps may lay in wait for us. Of course, spending every waking moment happy may be due cause to certify insanity, but given a dollop of perspective, and secure in the knowledge that you yourself are mere ephemera, it's clear that one must always strive to let go of the dark and embrace the light, even when stuck in a dimly lit room.

Being given a dread diagnosis shocks us with the fact of our own mortality, a universal certainty that when healthy we mostly choose to ignore, almost literally whistling past the graveyard. While no one wants to dwell on the fact that their life is but a speck in the grand scheme of things, acknowledging  that fact goes a long way towards living mindfully and realizing the preciousness of each moment we spend on this side of the grass. Although circumstances might not have played out quite as we had planned, fighting against the currents of life only leads to exhaustion and eventual capitulation.

This is not to say that we should surrender to misfortune, but rather we must learn to appreciate the updrafts and avoid the downdrafts, and like a glider soaring high, rise above the hills and valleys below. This is almost never easy, and at times can be awfully damned hard, but to do anything else is to lose control of the short gift of time with which we have been bestowed. I'm of the belief that quality of life trumps quantity, but as long as there is quality to be found, we owe it to ourselves to find it. Live well, as the light of existence is brief, and the darkness that follows an impenetrable mystery. As a friend once told me, life is uncertain, eat dessert first.

Bits and Pieces: Weird Science Edition

Regular Wheelchair Kamikaze readers have probably noticed that the blog has undergone several design changes during the last few weeks. Yes, I have been obsessively changing the look of the blog. I admit that, and I know that admitting that I have a problem is the first step to recovery.

I mentioned a while ago that I changed blog templates in order to facilitate some of the newer features being offered by Blogger, the home of Wheelchair Kamikaze. These new templates offer a variety of customizable looks, and I just can't seem to stop myself from compulsively customizing the damn thing. It's just never quite right. Take this latest edition, for example. I don't know, but to me it just seems a little too white bread. It lacks pizzazz, and I'd like the blog to be pizzazzy. The problem is, too much pizzazz and things really go kablooey. There's a very fine line between pizzazz and visual vomit, and I'm trying to strike that perfect note. Only now I fear I've veered too far into the mundane. I think I'm suffering from "Does This Blog Design Make My Ass Look Fat?" syndrome. So, please bear with me, as I expect there may be more changes to come.

Right then, consider yourself forewarned. It's time once again for my monthly (or so) collection of various MS related news items, gathered during my recent meanderings around the web. Sometimes I'll throw in some non-MS related news items, but I'm pretty sure this month's grab bag is all MS related. I've included a few odd bits, just add some, um, pizzazz.

Off we go…

♦ Since CCSVI always seems to be of interest, let's start there. The second annual ISNVD (International Society for Neurovascular Diseases) Conference wrapped up last month, and the organization has posted a group of videos featuring some of the notables who presented at the conference, making for some very informative viewing (click here). Thank you, ISNVD.

A terrific primer on CCSVI treatment, offering a great summary of the basic hypothesis and the research surrounding it, can be found here (click here).

Some interesting charts tracking the rise and fall of Google searches looking for "CCSVI" can be found here (click here), courtesy the fine folks at Shift.ms. More on them later. Looks like interest in CCSVI may be waning, which I suppose is only to be expected given the huge amount of hype the discovery has received over the last two years or so. I'm always surprised at how many patients I meet in person (as opposed to the Internet) who don't know much about CCSVI, so it's not like the entire MS universe has researched the subject. Still, the firestorm set off by CCSVI when it first caught the interest of the Internet MS population was bound to lose some of its sizzle, a phenomenon which is visually reflected in these charts. It is telling to note that the US does not even make the top 10 countries searching for CCSVI, which I believe is indicative of the mysterious silent treatment CCSVI has been given by the news media here in the United States.

♦ Shift.ms (click here) is a Multiple Sclerosis social networking site specifically designed for younger patients dealing with the disease. It's hard enough handling this dog from hell as an adult, my heart really goes out to those teens and young adults trying to navigate those at turns difficult and wonderful years with a chronic disease thrown into the mix. If you are a young person dealing with MS, join up and share the burden. If you know a young person with MS, please direct them to the site, which is relatively new and looks like it will be a wonderful resource for that demographic. The good people who organized the site have posted videos of an MS Information Day recently held in London, which includes a wide range of topics of interest to all MS patients regardless of age that is well worth checking out (click here).

The National Multiple Sclerosis Society will be opening the doors to its own social networking site, MS Connection, on Monday, March 12 (update: the site is now live, click here). The site will be packed with features, and is meant to serve much like a Facebook for PwMS. Now, I know that many of you out there have mixed feelings about the NMSS these days, but MS Connection has the potential to be an extremely valuable resource for interacting with your fellow patients. The site will be censorship free (as long as gross vulgarities are avoided), and it's often been said that the best way to change an organization is from within. Keeping in contact with fellow MSer's of all stripes is key to maintaining your sanity while grappling with the disease, and MS connection will help you do just that. I've been able to preview the site (yes, shockingly, I haven't been blacklisted by the NMSS), and can tell that lots of work went into this effort, which is well designed, user-friendly, and actually pretty darn neat (yes, I did just use the word "neat". I'm wearing a helicopter beanie and knickers as I write this).

♦ This interesting graphic, brought to my attention last week by a WK reader, names The Top 10 Medical Inventions of the Last 50 Years (click here). I won't ruin your anticipation, but I actually met the inventor of The Top of Medical Invention of the Last 50 Years last month. Coincidence, or proof that there is order to the universe?…

♦ The use of Histamine to treat multiple sclerosis has a long and controversial history, and some recent research may lend some scientific credence to the practice (click here). First put into widespread use in the 1950s by Dr. Hinton Jonez (click here), who treated thousands of MS patients at his clinic in Tacoma, Washington, with great reports of success, the use of Histamines to treat MS has held on along the fringes of the MS community for years, with some people still swearing by its effectiveness (click here). The most common form of Histamine used by MS patients is Prokarin (click here), administered as a patch, which can be obtained from compounding pharmacies. Please note, many consider the use of Histamines quackery, and I've never used it myself. But its use seems relatively safe, and if one in 1000 patients can find some benefit in it, it's worth a mention. Any port in a storm, you know?

While we’re on the subject of alternative medicine, a trial is underway that is studying the use of parasitic hookworms as a possible MS therapy (click here). The little buggers are administered in a patch, from which they burrow into the skin of the test subject and eventually make their way into the gut, where they take up residence and, according to the theory, help modulate the immune system. Similar therapies have been tried, with success, on patients suffering from Crohn's Disease, and despite the yuck factor, there is method to this madness.

The theory behind the use of parasites to treat autoimmune diseases is called the "hygiene hypothesis" (click here), which postulates that the ultra-sanitary conditions of modern Western societies has eliminated parasites from the human body, thereby throwing out of whack our immune systems, which developed over millions of years around the presence of intestinal parasites. In the absence of these parasites, so goes the theory, our immune systems have time on their hands, and you know what they say about idle hands. The geographic distribution of MS lends support to this notion, as MS is most prevalent in developed countries, and nations whose populations retain their symbiotic relationship with parasites are notably absent of MS as well as a host of other autoimmune diseases.

Would I personally try this therapy? Heck yeah! As I've stated before, at this point I'd crawl up the rectum of a dyspeptic rhino if there was evidence it might cure my disease.

♦ Ah, now onto one of my favorite topics, asinine medical research. A study out of the University Of Washington looked at the concern about falling among MS patients (click here). Shockingly, they found a majority of MS patients are concerned about falling, and even restrict their activities as a result of those concerns. HOLY CRAP! STOP THE PRESSES! You mean to say that patients suffering from a disease that weakens limbs, effects balance, and causes dizziness are worried about falling? Well, knock me over with a feather (and believe me, you could)! Researchers conducting such studies appear to be required by law to create acronyms, so this bunch of Einsteins refer to "concern about falling" as CAF. Their careful analysis of 575 patients found that 62% reported CAF, and that 67% restricted their activities as a result of CAF. I'm very curious about those 5% who don't report any CAF yet still restrict their activities. Are they psychic? Do they take their umbrellas with them on sunny days?

A further insight was that "While the researchers found that fall risk increased with declining mobility function, at a certain threshold, further declines in mobility function were associated with fewer falls, possibly because of reduced fall risk exposure." In other words, as a person's body becomes more screwed up due to MS, their risk of falling increases, until they become so freaking gimpy that their asses get stuck in wheelchairs, at which point their risk of falling decreases dramatically. WELL, HOWDY! Who would've ever thought that people sitting wheelchairs have less chance of falling than people who will very soon need to be in wheelchairs but are still gamely struggling to remain upright despite the increasing uselessness of their legs? Brilliant!

I want to conduct my own research study. I'd like to test the CAF of the researchers who did this study the moment before I drop bowling balls on their heads. And then let's see how their behavior is modified after they return from the emergency room. Jackasses.

♦ One last item. If you happen to wake up one day talking with a foreign accent, don't worry, it's probably just your MS (click here). Seems that Foreign Accent Syndrome has been documented among MS patients, sometimes even as their first symptom (click here). If I ever develop this symptom, I hope I wind up talking like Boris Badinov, of Bullwinkle fame (see below).