Enough Already!

Sorry, but this is yet another post – hopefully the last – about my ongoing struggles with kidney pain, catheters, and UTIs (Urinary Tract Infections). I've written three previous essays in this rather regrettable series, the first detailing my waking with horrendous pain in my right lower back, which led me to visit the emergency room twice in three days (click here), the second delving into the myriad pleasures of having a catheter inserted into my wing wong (click here), and the third detailing my contracting a UTI (Unwanted Trickle Interference) as a result of that catheterization, including my belief that it may have been brought on by my neglecting to sufficiently protect myself against the evil eye (click here).

Unfortunately, although I thought that last essay would be the end of this sad saga – given my new strategy of preempting any potential evil eye by pointing out that "Life Is a Terminal Illness" every time I say something even vaguely optimistic – I was nevertheless once again beset by The Whammy. On this occasion my wretched curse took the form of yet another UTI (Unpleasant Tinkle Insurrection). Yes, after fighting off the first infection with the help of two different antibiotics, I was shanghaied by another – or perhaps a continuation of the first – just about a week after I believed I was free and clear of the woes that had plagued me for the better part of two months.

Alas, I was stupendously wrong. Just as I felt I was beginning to regain strength to levels approaching those of my old normal – which is, albeit, a level far below optimal after 15 years with progressive MS – I awoke one day feeling feverish, and upon relieving myself felt that now all-too-familiar burning sensation in my Jolly Roger, an incendiary discomfort in my nether regions that led to an immediate phone call to my urologist. After I informed him of my profuse distress, he phoned in a prescription for yet more antibiotics and told me that if these did not have the desired effect I could very well be hospital bound for some high-powered intravenous antibiotics targeted directly at whatever pernicious bug had bedeviled me. The prospect of such a visit rose forth in me the vehement desire to unceremoniously regurgitate my previous night’s supper in some spectacular fashion.

Thus began another week spent in semi-delirium, as the infection and its antibiotic foe took up arms against each other, my body an increasingly beleaguered battlefield torn asunder by the ravages of microbial warfare. To my good fortune this conflict coincided with another taking place on a ballfield in Boston, as my beloved Red Sox took on their arch nemesis New York Yankees in a crucial four-game joust, providing my disease addled brain with some welcomed diversion. The Boston nine took all four contests against the evil incarnate Yankees, which I took to be a favorable portent for the insurrection being decided deep within my innards. These UTIs (Ungainly Tallywhacker Intruders) have shown themselves to be quite the troublesome beasties, far more debilitating than I ever could have imagined.

Finally, three or four days shy of fortnight the fevers and associated symptoms relented but left in their wake a malingering malaise, a weariness and heaviness of body and spirit that has left me spent beyond reason. I can only surmise that this is the product of a physical calculus whose equation includes multiple infections; several rounds of powerful antibiotics; the bodily wear and tear of having a garden hose inserted and then five days later wrenched from my who who dilly; and days on end of fevers, sweats, and tortured sleep. 

Although the acute symptoms of this last infection subsided well over a week ago, it is only now that I have found the fortitude to put these words to paper, or, more correctly, to dictate them into my iPad whilst reclining in bed. When I venture out of bed to sit in my wheelchair I feel as if I might pass out after only an hour or so, sometimes less, like a Victorian lady prone to the vapors. Should this delicate condition persist much longer, I suppose a consult with yet another modern disciple of Hippocrates will be necessitated. I beseech the heavens above to intervene and make null and void this last option.

Egads, it appears that during my labors composing this essay I have become possessed by a ghostly essence aspiring to the literary stylings of Dickens or perhaps Melville, which I must now endeavor to shake loose from my earthly vessel. I best try reading something good and trashy, like some of my previous blog posts.

Anyway, yeah, in plain English the last few months have totally sucked. Bigly, I can tell you, sucked bigly. And, as you might by now have guessed, I am pretty much bored out of my gourd. Fingers crossed, these pages will soon be back to Wheelchair Kamikaze's usual mix of cynical looks at MS related research, self-indulgently introspective essays, and other such multiple sclerosis and Marc Stecker themed fiddle faddle. Enough already with the UTIs (Ultimately Tiresome Information), penis synonyms, and bellyaching. I'm sick of being sick, and just want to go back to being sick, if that makes any sense at all. Harrumph.

Kinahurah.

Life is a terminal illness.

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My good friend Mitch Sturgeon, founder of the MS themed blog Enjoying the Ride, has written a compelling memoir, also called Enjoying the Ride. Mitch's book recounts his life both before and after MS forever altered its course, and the story he weaves makes for a fascinating read. In his straightforward and episodic style, Mitch tells tales both entertaining and poignant, including those of his special relationship with his mom, a quadriplegic from the time Mitch was a small boy. On so many levels, echoes from the past ricochet into Mitch's experience with his own progressing disabilities, revealing subtle truths and even some family secrets along the way. I recommend this book wholeheartedly, so much so that I was honored to write its forward… Enjoying The Ride is available from Amazon in both electronic and paperback versions (click here)…

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.

Don't Get Stuck in the Suck

(For those who receive Wheelchair Kamikaze via e-mail, this post contains a video, which can only be viewed from the WK website)

In one of my recent posts, I mentioned that having a progressively crippling disease royally sucks, but that somehow I've managed to learn how not to get stuck in the suck (click here). I thought I might expand on that idea some, in part because it's a hard yet vitally important lesson to learn, but mostly because I'd like to see the expression "Don't Get Stuck in the Suck" emblazoned on T-shirts, billboards, beer cozies, and ladies undergarments from Paris to Beijing.

I've seen and heard some folks with MS express the sentiment that their getting sick was somehow a blessing, in that it gave them a sense of perspective and allowed for a richer existence intellectually, spiritually, and philosophically. Well, more power to those people, but from where I sit watching myself slowly wither away just flat out sucks. In one of my very first blog posts, I wrote that MS sucks big fat hairy monkey balls (click here). Now, almost 3 years deeper into the progression of my disease (which is now a mystery illness (click here)), I can say with utmost surety that whatever ails me sucks something far more disgusting than big fat hairy monkey balls. At this moment I'm having a hard time thinking of anything more disgusting to suck, so let's have some fun and make this an interactive exercise. Please leave your ideas for something that's more disgusting than big fat hairy monkey balls with which you equate having your disease in the comments section below this post. Hopefully, your efforts will be both cathartic and extremely entertaining for all involved…

Okay, given that having a chronic progressively disabling disease sucks -insert super disgusting object here-, how does one saddled with such an affliction not get stuck in the suck? Well, it takes a lot of mental discipline, as well as a liberal dash of the perspective that being sick does indeed impart. Don't get me wrong, along with the "Blessed with MS" people, I readily acknowledge that the disease has led me to live a much more enlightened life, but given my druthers I'd happily go back to my former sometimes miserable and largely unenlightened but physically healthy old existence. If I could take with me just a smidgen of the wisdom that's been pounded into my head by dealing with a chronic progressive illness, all the better, but that certainly wouldn't be a prerequisite for a visit from the good health fairy. Unfortunately, I don't think the good health fairy is going to be flitting around my bedroom anytime soon, so in order to avoid getting stuck in the suck I've found that it's extremely important to not compare your circumstances to anybody else's, and especially not to yourself as you once were.

While zooming around the streets of New York City in my wheelchair, I'm usually able to keep myself amused and engaged by simply soaking up the sights and sounds of the city whizzing by, and occasionally scaring the living crap out of unsuspecting pedestrians as I careen past them just a wee bit too close. I've only actually hit maybe three people, but I'm convinced they were all really bad people. When I'm in Central Park or down by the Hudson River, I'm typically busy taking photos, watching and listening to street performers, taking in the scenery and parade of humanity, or a combination of all three. I also consciously try to not project an "I'm a victim" vibe, and approach these activities con mucho gusto, or at least with as mucho gusto as I'm feeling capable of on any particular day, which sometimes is more lesso then mucho.

This combination of outside distractions and inner focus usually keeps me from getting ensnared in any self-defeating mind traps, but occasionally the shields do go down and I find myself overcome with waves of tremendous envy for the swarms of people who can simply walk, jog, dance, ride a bike, lay out on a bench under a shady tree placidly reading a book (trying to read a book with only one working but wonky hand is damn near impossible), stroll hand-in-hand with their partner while lost in idle chatter, or do any one of the infinite number of things that I once accomplished without thought or effort but now are completely beyond my shrinking repertoire of tricks. At such moments all it takes is just a gentle push, and down into the vortex I tumble, pummeling myself from the inside out with a toxic mix of regret, chagrin, anger, helplessness, fear, panic, and dread. Into the darkest black hole I plunge, sucked in by the almost inescapably wicked gravity of big fat hairy monkey balls.

It's very hard to climb out of such a pit, and extricating myself usually entails screaming, crying, cursing the universe, and driving my wheelchair even more recklessly than usual (again, taking care to hit only really bad people). When caught in such a trap, you must not allow yourself to inflame the situation by getting down for being down, or else you'll get caught in a vicious loop, a snake eating its own tail. Admittedly, when dealing with a heinous disease, it's impossible to never plumb the depths, but it's imperative to keep such forays to a minimum. To do that, to avoid getting stuck in the suck, one must exercise control over the thoughts and emotions that create each person’s own version of reality. The treacherous shoals of agonizing self-pity constantly whisper an enticing siren song, and sometimes it's awfully difficult to not allow yourself to venture dangerously close to smashing up against some devastating inner rocks, but you can take command of your emotional rudder and steer clear. In fact you must, in order to give yourself any chance of escaping endless suffering (this goes for both sick and healthy alike).

So much has been written and said about living mindfully, occupying the moment, and staying in the now, that the sentiment has come dangerously close to becoming trite. The effort to stay rooted in the present has also been made to sound almost clinical, like some kind of joyless mental exercise as appealing as attending a psychological fat camp, but the reality of living mindfully entails joyfully soaking up all of the wonder that each moment has to offer, if only we allow ourselves the gift of recognition.

Thoughts of the past have their value, as remembering the good times and learning from the bad can certainly enhance the present, but living too much in the past is a trap of its own, stealing that most precious commodity of all, time, and preventing the creation of new memories to take their place alongside the old. When living with progressive illness, thoughts of the future can be tremendously frightening, and peering forward too often can lead to hopelessness and despair. Whatever a person's circumstance, nobody knows what the next moment may bring. As President Kennedy's limousine made that fateful left turn onto Elm Street in Dallas around noon on a sunny November day, he was the most powerful man in the world, oblivious to the horrors that lay in wait just seconds away.

Despite my piss poor physical state, I still retain enough quality of life to appreciate the hints of magic contained within most moments. For example, at this very instant I can sense the creative gears spinning in my head, and am transported by that feeling. I glance to my left and see one of my favorite vintage fedoras, a perfectly formed deep brown felt hat that's over 50 years old but is still as soft as a kitten, perched atop a tiny Adirondack chair in which sits my little plush replica of Wally the Green Monster, the Boston Red Sox mascot. Silly as it is, that little Wally makes me happy.

In front of me is a wonder that is truly enchanted, my computer, a machine that performs tricks that would leave Houdini insanely jealous. Right now it's transcribing my words as I speak them, and soon enough it will send them to some Fantasia in which people all around the world will be able to read and respond to them. The powers of this electronic wizard leave me humbled and profoundly grateful, having enriched my life in ways that are beyond words.

I look to my right and smile at just how messy my desk is, and then see a photo of one of the true loves of my life, my late great Labrador Retriever Stella, staring up at me with bright sparkling eyes, floppy ears, and a goofy smile on her face, still my faithful companion even though she's no longer here to snooze at my feet.

Outside my window, as I sit perched in the sky 18 floors up, the sounds of the city late at night create a gentle opus, a tapestry of sound comprised of the soft hum of cars and people passing by way down below, regularly punctuated by the staccato rhythms of the labors of pneumatic brakes on faraway buses and garbage trucks, all interrupted by periods of pregnant silence, these elements coming together to comprise a mellow ambience that signals tranquility to the ears of this city boy. My sweatpants and hoodie feel soft and comfy, helping to keep at bay both the emotional and physical chill of the outside world.

The fact of my disability robs this moment of none of its wonder, and if it tried I just wouldn't let it. That may change in a few minutes when I attempt to make my way to the bathroom to get ready for bed, but that moment might as well be decades away, because I am immersed in the now.

All of this does not change the fact that being sick sucks big fat hairy monkey balls, but it does help me keep from being stuck in the suck.

The below video does a much better job than I ever could describing the wonder of every moment. Its visuals and narration are simply sublime. I've been watching it at least once a day for about a week now. I hope you'll be as grateful for it as I am. Please be sure to watch it in high definition and full-screen. When the video starts playing, click on the little gear symbol on the bottom control panel and choose either 720P or 1080P to get high-definition video. For full-screen, click the symbol on the far right of the control panel.

Say It Loud, I'm a Gimp and I'm Proud!

Image by Heinrich Klaffs via Flickr

Apologies to James Brown for the title of this post, as his 1968 funk classic "Say It Loud, I'm Black and I'm Proud" (click here to listen) helped galvanize the civil rights movement in America, offering a joyous rallying cry to people who for far too long had suffered at the hands of racism and oppression. The song was not only a shout of protest, but an admonition to embrace the very thing that conferred minority status on an entire people and turn what for some had at one time been a mark of shame into a badge of honor. On top of all that, the song irresistibly generates the urge to get up and shake your groove thing. That is, of course, if you are able to get up at all.

Those of us whose disease has progressed to the point where shaking our groove things is a distant memory and has left us visibly disabled - reliant on canes, walkers, or wheelchairs - also find ourselves members of a minority group, the disabled, the inclusion in which leaves some feeling invisible, helpless, and diminished. Much of the world simply isn't designed for people who don't have full use of their limbs, and the fully functional folks who populate it can be insensitive, uncaring, ignorant, and sometimes even intolerant. Though much progress has been made in in the fight for the rights of the disabled, the struggle is closer its beginning than its end.

Throughout much of history, victims of chronic illness, particularly of the kind that deform or disable, have often been looked upon with scorn, as if getting sick was somehow a mark of shame, the afflicted somehow responsible for their own affliction. In some cultures it was considered bad luck to merely let your gaze fall upon such a person, and even in those societies with a somewhat more sophisticated purview, it was often thought best to sequester these people away, if only to keep the more fortunate from feeling uncomfortable and ill at ease. Even within the last hundred years, the Nazis saw fit to exterminate those with chronic or genetic illnesses, to keep their precious Aryan gene pool from being polluted by such wretchedness.

It's no wonder, then, that the sick can sometimes feel some vague sense of shame, wondering what on earth they'd done to deserve such a fate. The human mind seems programmed to search for reasons, yearning for clearly defined cause and effect connections in a futile attempt to make some sense of the world and our place in it. The sheer randomness of getting hit with a miserable disease is in itself unsettling; in some ways illness might be easier to deal with if we could discern some reason for our demise, if we could appease ourselves with the knowledge that our current sorry state was brought about by some heinous act we'd committed in the past. No dice, though, the truth is that in the giant poker game of life we were simply dealt a crappy hand. Remember, though, that played the right way, with just the right amount of bluffing, sometimes even a handful of rags can be turned into a winner.

As I whiz around the city in my wheelchair, I often encounter fellow members of the electric chariot club, and always attempt to give them a friendly nod and a hearty hello. Many eagerly return the favor, but others seem to fold into themselves, clearly wishing they could become invisible, embarrassed that any attention be shined on them. My heart goes out to these folks, particularly because I completely understand where they're coming from, and then some. I was once quite the prideful jackass, mortified at the thought that the wonderful me could wind up in a wheelchair, and when the day finally came and the damn thing was delivered, I stared at it for several hours feeling quite nauseated before working up the gumption to actually get in and give it a try.

I've never felt more acutely self-conscious than those first few minutes wheelchairing out on the streets of the city, thankfully with my wife by my side. Soon enough, though, I realized that most of the people on the street were so self-absorbed that they didn't even notice me, as was evidenced by their propensity to walk right into me and my mechanical monster, as if anything below chest level was invisible. Before long I chafed at the idea that some freaking wheelchair was going to define me. Screw it, I would define it. I am not a chair, a cane, a walker, or an ankle brace, I'm Marc, and maybe now an even better version than the old Marc, having survived and learned from the endless gauntlet of physical and emotional affronts so thoughtfully provided by my disease and the modern medicine machine into whose belly I've forcibly been thrust.

Chronic disabling illness provides quite the double whammy; not only must the patient deal with the sobering psychological realities of being sick, but also with the physical handicaps wrought by their affliction. I'd imagine that even for the most stalwart among us, the burden can sometimes be just about too much to bear. Despite always attempting to publicly put my best foot forward (ha ha), each landmark on the road to disability has caused me emotional turmoil and plain old heartache. I've stumbled down a path familiar to far too many, marked by a succession of assistive devices, each one more obvious and discomfiting than the last. The anticipation that preceded my needing each of these devices was undeniably gut wrenching, so much so that in retrospect I realize that I put off reluctantly accepting their help for far too long. Frantically holding on by my fingernails to a self-image that had simply ceased to be, when I finally relented and allowed these mechanical aids into my life, they brought with them much needed relief and liberation, rather than the shame and revulsion that I had been so fearfully expecting.

Overcoming the mental and physical hurdles represented by accepting my increasing vulnerability has certainly given me a new sense of perspective, and maybe even a pinch of wisdom. The strange truth is that although my disease has left me exceptionally weaker physically, it's also made me immensely stronger psychologically. Like each and every one of my fellow patients, I've overcome obstacles before which I thought I would simply shatter, and by so far surviving the raging battlefield of illness I've gained self-knowledge and an inner fortitude that I never previously could have imagined myself capable. I've witnessed bravery and guts in other patients that have oftentimes had me verging on tears, daily displays of strength often nonchalantly expressed with nothing more than a smile and a shrug. I tip my hat to all of you, and invite everyone to join me in raising a big middle finger to any thoughts of shame or self-doubt brought about by the random bad luck of being socked by a serious illness, to any notion that we as people have somehow been diminished by our disease, and to the goddamned disease itself. Having and living with MS sucks, but the challenges it presents give ample opportunity to display grace, courage, and powerful determination.

Say it loud, I'm a gimp and I'm proud!

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.