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.

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.