Monday, April 25, 2011

Situation Normal, All Fracked Up…

uncertainty principle

Image by Mathieu Struck via Flickr

When I started this blog, I was determined that it wouldn't be a treatment diary, so I haven't detailed the daily, weekly, and monthly ins and outs of my medical meanderings. Still, I've recently written about the fact that my diagnosis has been called into question, and I've received several inquiries in that regard. I thought it might be helpful if I gave a few more details about my mystery diagnoses, and how it's affected some of the treatment choices I've made and continue to make.

After my diagnosis of MS in March 2003, I quickly became uneasy with my doctor's conclusion. Like most other newly diagnosed patients, I immediately hit the Internet, reading all I could about the disease and interacting with dozens of patients on MS forums. The more I investigated, the less convinced I became that I actually had multiple sclerosis. Yes, two lesions did show up on my MRI, one tiny spot in my brain, and a much larger and more troublesome lesion at the base of my brainstem. Tests on my cerebral spinal fluid, though, revealed no Oligoclonal-bands (click here), telltale signs of CNS immune activity that show up in a majority of MS patients. O-bands are a bit less common in patients with progressive MS, the flavor of the disease I was suspected of having, but still, their lack fueled my reason to doubt.

Additionally, I had a variety of peculiar physical symptoms and some health history that just didn't seem to mesh with a diagnosis of Multiple Sclerosis. About six years before my first MS symptom struck (a slight limp in my right leg, which has since progressed to severe weakness and spasticity in my entire right side, and progressing weakness on the left), I was suspected of having Discoid Lupus (click here), a form of Lupus that attacks the skin. Although that diagnosis was never quite nailed down, my doctors at the time were confident that I did have something very strange going on in my immune system. After approximately 3 years, my Discoid Lupus type symptoms (small skin blemishes that left tiny crater shaped scars, hence the word "Discoid") burned out, to my considerable relief. Soon after, though, I was diagnosed with Hashimoto's Thyroiditis, an autoimmune disease that destroys the thyroid gland. I started showing signs of other types of endocrine dysfunction as well, indicating a cascading failure of my pituitary gland. Although Hashimoto's Thyroiditis is often seen in patients with MS, pituitary problems are not. About three years after these endocrine problems surfaced, my telltale limp showed up, and I was soon given the MS label.

About a year into my MS saga, I switched MS doctors and started seeing my current neurologist. He immediately suspected that I might be suffering from some other disease (he suspected Neurosarcoidosis-click here), and ordered an extensive battery of tests. When none came back positive, he deduced that Primary Progressive Multiple Sclerosis was the most likely diagnosis, and so the initial determination stood.

Since there is no actual test for MS, determining whether a patient suffers from it is a diagnosis by exclusion. The physician explores other possibilities that might explain the patient's symptoms, and if none pans out, the diagnosis of MS is assumed. In many patients, multiple sclerosis makes itself readily apparent. A relapsing remitting course of disease, the occurrence of enhancing CNS lesions on MRI images, and the presence of O-bands in the cerebrospinal fluid are all highly indicative of a multiple sclerosis diagnosis. Cases of the disease that are progressive from the outset are harder to diagnose, as there are quite a few maladies that can mimic progressive MS (click here).

Despite the fact that progressive MS is notoriously hard to treat, and there are currently no approved treatments for PPMS, I am not the type to sit around and do nothing while some insidious enemy hacks away at my body, and my neurologist is known for his aggressiveness in fighting the disease. We embarked on a comprehensive battle to attack my disease, which has included a wide variety of treatments, some quite outside the box, which are literally almost too long to list. Suffice it to say, none has had any effect whatsoever on the course of my disease.

Along the way, my illness has shown itself time and again to be extremely atypical, most notably in the fact that my MRI images have never changed. The two lesions that showed up in 2003 are still there today, and have never altered in size or appearance, or been joined by any others. MRI images of my CNS taken eight years ago are indistinguishable from those taken six months ago. Because of all of the atypical features of my illness, I eventually decided to seek another expert opinion, and was seen at the Johns Hopkins MS center in the winter of 2006. After undergoing a rigorous series of tests, Johns Hopkins also concluded that although my disease was certainly strange, they could find no indication that it was anything other than atypical PPMS. During the following few years, I kept in contact with the doctors at Johns Hopkins, and in 2008, after I sent them some recent MRI images (which remained unchanged) and explained that my disease had progressed significantly, it was requested that I come back down to Baltimore for another examination. This time, the doctors concluded that I very likely did not have MS, but they could not come up with a suitable alternate diagnosis. Several were suggested (Sjogren's disease and mitochondrial disease among them), but further testing ruled out these other illnesses.

At this time, I was accepted into a study being conducted at the National Institute of Health's main campus in Bethesda, Maryland, which was seeking to identify patients with clinically definite multiple sclerosis for use in further MS research. The NIH was finding that many of the subjects they were using in their multiple sclerosis research studies were actually misdiagnosed, and these misdiagnosed patients were polluting their research data. Over the next 18 months, I made four visits to the NIH's tremendously impressive facility outside of Washington, DC, during which every conceivable test was conducted. At the end of the process, the NIH declared that my test results and disease presentation did not fit the definition of multiple sclerosis by any known diagnostic criteria, but they too could not come up with a reasonable alternative. Needless to say, the situation was, is, and I'm sure will continue to be incredibly frustrating.

My primary neurologist here in New York, who runs a state-of-the-art research laboratory in addition to his clinical practice, recently did an extensive analysis of my spinal fluid, which turned out to be so strange that he had the analysis, which took several weeks to complete, repeated to confirm the results. Unlike many other MS patients, my neurologist and I have a very comfortable and frank relationship, and he told me just how bizarre my spinal fluid scans were in very colloquial and colorful language (I'll let you use your imagination to fill in the blanks).

Since it now seems likely that I'm suffering from either a) one of the strangest cases of MS on record, or b) some other autoimmune process that is attacking my central nervous system in addition to various other bits of my anatomy, my neuro suggested that I try IVIG (click here), a treatment that has been shown to be effective in some cases of MS, and perhaps more importantly for me, a variety of other autoimmune conditions that can attack the CNS. IVIG is a blood product made up of the antibodies of over 1,000 blood donors, which has been shown to attenuate the aberrant immune response seen in a variety of diseases, and is typically given monthly. Since I have a history of experiencing unexpected and sometimes frightening side effects from new medications, we started out by doing half a dose of IVIG about a month ago (the treatment is usually given in two infusions over two days, but I only did one infusion the first time around). I didn't suffer any negative side effects, so later this week, on Tuesday and Thursday, I'll be doing my first full dose of IVIG.

Many of you are probably asking yourselves where CCSVI fits into my treatment picture. I had my first venoplasty about 13 months ago, which did reveal a blockage caused by a muscle pressing on my right internal jugular vein, but no other readily apparent venous abnormalities. Unfortunately, the muscle bundle is currently impossible to treat using the available treatment modalities, as ballooning would have no effect on the pressure being put on the vein by the muscle, and a stent would likely be bent out of shape, and possibly fracture, due to that same pressure. It is also uncertain as to whether the muscle bundle is causing significant disruption to the perfusion of blood through my central nervous system (Dr. Zamboni himself had a look at my images, and cast doubt as to the significance of the blockage). I had been planning to undergo another CCSVI treatment procedure sometime soon, because of the advances that have been made in the treatment protocol in the 13 months since my first attempt, but I've decided to put this off for at least a few months in order to properly ascertain whether or not the IVIG is having the desired effect. Doing a CCSVI treatment now would only muddy the waters, and the blood thinning regimen given after the procedure could interact with and/or interfere with the action of the IVIG.

I recently underwent a Doppler sonogram done to the Zamboni protocol, which did reveal signs of CCSVI (confusing, since my initial venoplasty did not reveal these abnormalities). This further blurs the issue, as it's become quite clear that I likely do not have MS, and CCSVI has been shown to have a high correlation with multiple sclerosis. However, recent studies also seem to indicate that the venous abnormalities known as CCSVI may also be prevalent in other neurologic diseases, so I very well could have both CCSVI and a disease other than multiple sclerosis. If the IVIG doesn't do it's stuff, I will definitely revisit CCSVI, very likely sooner rather than later. Even if I do experience benefit from IVIG, I'm inclined to undergo another venoplasty sometime in the not-too-distant future, to investigate the blood flow abnormalities indicated by the Doppler ultrasound. As I've written before in this space, waiting on getting a CCSVI venoplasty done is not a terrible option, as knowledge regarding CCSVI is constantly growing, and the treatments used to address it are evolving by the day.

As I'm sure you can imagine, this has all been extremely hard to sort out, but I'm now comfortable with my treatment decisions going forward. Despite the questions surrounding my diagnosis, I still consider myself an MS patient (since no other label really applies), and the experience of my disability progression is identical to that of a patient suffering from aggressive PPMS. In spite of the confusion and distress caused by all of this uncertainty, in a way not having a diagnosis gives me some reason for optimism, as it could turn out that whatever I have is more treatable than PPMS. I continue to hope that some brilliant doctor, upon examining me and going over my voluminous record of test results, will suddenly exclaim, "Eureka! You're suffering from the most advanced case of Cooties I've ever seen! Simply eat 10 red M&Ms a day for the next two weeks, and you'll soon be running marathons…"

Hey, if you don't have dreams, you have nightmares…

Enhanced by Zemanta

Saturday, April 23, 2011

BlogTalk Radio-It's All in the Blog

This past Wednesday, I appeared on an Internet radio show, along with fellow MS blogger Lisa Emrich. The show was graciously hosted by Amy Gurowitz, herself an MS blogger.

I may be a bit biased, but I thought the show was quite interesting, and touched on areas of importance to all MSers, not just those interested in the process of blogging. Lisa, Amy, and I relate the stories of our MS diagnoses (or, in my case, my mystery diagnosis), as well as many of the hot topics currently consuming the MS community. You'll laugh, you'll cry, you'll say to yourself, "How can that guy write so reasonably well, yet talk like he was recently hit in the head with a cast-iron frying pan?"

Just hit the play arrow on the little thingy below to listen to the show.

Listen to internet radio with 1st MS Radio Station on Blog Talk Radio
Share |

Sunday, April 17, 2011

Bits and Pieces: CCSVI, MS Meds, The Scum of the Earth, and More…

Hula GirlImage by Marie Carter via Flickr

I'll start out with some shameless self-promotion, because it's my blog and I can do anything I want with it. So there.

On Wednesday, April 20, from 8 PM-10 PM, I'll be a guest on the Internet radio show "MSLOL-Radio: "It's All about the Blog" (click here). Hosted by the ever affable Amy Gurowitz (click here), I'll be joined on the show by Lisa Emrich, MS blogger extraordinaire (click here). Listeners will be able to ask questions via phone or instant message, so you'll be able to join in on the fun. Please tune in, if only to hear how many times I can say "um" in a single sentence…

The MS universe was dominated this past week by news coming out of the annual meeting of the American Association of Neurology, this year held in Honolulu, Hawaii. Yes, those neurologists have it rough. There were lots of presentations given on a slew of drugs currently making their way through the research trial pipeline (no shock there), and some controversial reports on CCSVI (no shock there, either). I'll also throw in a few other items of interest (at least my interest), so hopefully you'll find this edition of Bits and Pieces worthy of your time and attention…

  • First, The CCSVI Department: the big CCSVI buzz out of Honolulu was the publication of a paper detailing the results of the Buffalo Neuroimaging Analysis Center's Doppler ultrasound study of MS patients and healthy controls. The initial results from the study were first released over a year ago, but this is the first time they were published in a medical journal (click here).

    The Buffalo researchers found that about 55% of MS patients tested positive for CCSVI, as did about 22% of healthy control subjects. Additionally, about 45% of patients with other neurologic diseases also tested positive for CCSVI. While there is some dispute over the accuracy of the numbers, especially those of the healthy control subjects, some of whom were family members of the MS patients tested (though not all blood relatives), the real ruckus was started by the conclusions of the lead researcher, Dr. Robert Zivadinov, who stated that CCSVI was likely not a cause of MS, but rather appeared to be caused by the disease. This conclusion set off a frenzy of news reports screaming that the entire CCSVI hypothesis had been thrown into doubt (click here and here), and the usual shit storm of debate on Internet MS forums and Facebook pages.

    To my mind, at least, the question of cause and effect is secondary to inquiries as to whether or not treating the venous abnormalities now known as CCSVI actually help the symptoms of MS patients. This can only be ascertained by doing robust treatment trials of CCSVI venoplasty, some of which are already underway, with more coming (click here). The study does show that there is a high correlation between venous blockages and MS, a finding that alone warrants much more study. For some very good reporting on the Buffalo study, please watch the two videos at the top of this article (click here), produced by CTV of Canada. The second contains a substantive interview with Dr. Zivadinov himself, who clearly thinks that his findings do not invalidate the CCSVI hypothesis, but instead beg for robust follow-up studies.

  • The MS Meds Department: predictably, since almost all MS research is funded by big pharmaceutical companies, the MS portion of the AAN meetings was dominated by progress reports on new MS drugs working their way to the market. Two new oral drugs, Biogen's BG-12 (click here) and Teva's Laquinimod (click here) both showed positive results, although the Laquinimod results were found by some (investors) to be disappointing (click here). Interestingly, BG-12 appears to work, at least in part, by being a neuroprotective agent (click here), unlike most other MS drugs, which are designed to primarily suppress or modulate the immune system.

    The MS vaccine Tovaxin, once given up for dead (click here), has apparently risen from the grave, as its manufacturer, Opexa, released positive test result data (click here). According to the research, Tovaxin works best on patients who have had no previous exposure to any other MS disease modifying drugs. Not surprisingly, the price of Opexa stock went through the roof on the news (click here). I'll refrain from making my usual snarky comment about the crass commercialization of disease, and how much it makes me want to vomit. Whoops, looks like I didn't do such a good job at refraining…

    The most dramatic pharmaceutical findings involve a drug known as Campath, produced by Genzyme, which appears to be startlingly effective in eliminating MS symptoms in patients, even for years after they've stopped taking the drug (click here). Campath is a drug given by infusion two or three times a year, and the recently released findings, which involved patients who had taken the drug for three years, showed that after five years 65% of treated patients were free of clinically active disease, and 87% were free of accumulated disability. The drug is not without its downside, though, as 30% of treated patients developed autoimmune thyroid disease. Campath is also associated with a potentially serious blood clotting disorder, and an increased incidence of respiratory and other infections.

    The problem, of course, is that none of these drugs address the underlying cause of MS, which remains unknown. Drug companies are making so much money by finagling with patients' immune systems, and turning those patients into customers for life, that very little research into the mysterious disease trigger, or, more likely, triggers, has been funded and undertaken in the 20 or so years that the autoimmune theory has reigned supreme. This should have every MS patient outraged. Unlike some other MS activist, I can't condemn the current MS drugs en masse, since they do increase the quality of life of a proportion of patients taking them, but the lack of research into the roots of the disease does make my head explode.

  • This brings us to The Root Cause Department: a recent look at disease clusters in the US found an MS cluster in the small town of Wellington, Ohio, in which 25 cases of MS were reported within the six block radius (click here). This would seem to point to some kind of environmental factor (something infectious or toxic) being involved in triggering MS, at least in some patients. There have been quite a few MS clusters identified through the years, but none has ever yielded answers as to what created it (click here). Though these clusters don't prove anything, they do provide plenty of food for thought.

    In my opinion, what we call multiple sclerosis could very likely be a collection of similar diseases, with a wide variety of causes and triggers. Certainly, a genetic predisposition appears necessary, and from patient to patient the trigger that sets off that predisposition very likely varies. Possible triggers could include vascular problems, infectious agents, toxins, dietary and vitamin deficiencies, or a combination of factors. I think it very likely that future MS therapies will need to be tailored to each individual's particular disease characteristics. Of course, the problem lies in sorting all of this out, a process to which tragically few resources are currently being devoted. Too much money to be made figuring out new and better ways of stomping on the human immune system…

  • The What the Fuck Is Wrong with the World Department: I have recently been coming across way too many accounts of crimes being committed against MS patients. From scooters and wheelchairs being stolen (click here and here and here), to MS patients being robbed and assaulted (click here and here) to people masquerading as MS patients in order to make off with donations to MS nonprofits (click here), it's enough to shake my already fragile faith in humanity. I suppose we live in desperate times, but preying on the infirm should warrant some kind of extraordinary punishment. I know that we have supposedly evolved past a simple "eye for an eye" system of justice, but it would be extremely satisfying if the scumbags perpetrating these acts could somehow be given an extremely aggressive form of Multiple Sclerosis. It kills me to watch the nightly news and see a literal parade of the deranged and demented marching past the cameras, walking with ease despite having their hands cuffed behind their backs and hoodies pulled over their heads. I've learned not to expect a whole lot of justice out of the universe, and the notion that life is fair was long ago rendered laughable (even before my diagnosis), but the sight of rapists, murderers, and child molesters sauntering off to jail without so much as a limp calls into question a wide variety of belief systems…

  • The Do You Really Want to Know Department: the Mayo Clinic has developed a test which could indicate how fast a patient who has progressed from RRMS to SPMS will accumulate disability (click here). I certainly understand the practicality of possessing this knowledge, as it would allow for planning and preparation, but I'm really not sure I'd want to know. In some cases, ignorance is still bliss. How about you? Would you want to know?

  • The Eye Candy Department: one of the unexpected pleasures I've had in writing this blog is getting to meet (even if only through e-mail) interesting people from all over the world. WK reader Paulien Bats, from Groningen, the Netherlands, is an illustrator with MS who recently created the image below. I really like it, and not only because Albert Einstein is one of my main men. It's copyrighted and all that stuff, so please don't steal it. Thanks, Paulien…

Inside my head it's a mess

Enhanced by Zemanta

Sunday, April 10, 2011


matryoshka_nestIn my last post, I talked about becoming "The Accidental Alien" (click here), my mounting physical disabilities forcing me to make my way through an increasingly strange world designed by and for people with fully functional limbs. The adaptations needed to adjust for functional deficits involve not only the body, but the mind as well. As more and more of the outside world creeps beyond the reach of diminishing physical abilities, the inner self must begin jettisoning vestigial notions of identity that simply no longer apply. Objects once immensely useful, and sometimes cherished, are stripped of their functional value, and with them parts of our identity are stripped away as well.

Our sense of self is inevitably influenced by the outer world and our place in it as we make our way through life and undergo the many changes our paths require, some chosen and some imposed. In our consumerist society the link between material objects and self-identity begins at a very early age. I vividly remember the embarrassment of discovering, in the fourth grade, that I was wearing the "wrong" sneakers. Forty years ago the choice of children's athletic footwear was miniscule compared to the mind-boggling galaxy of brands and models that exist today, but even so, wearing an inferior brand (in my neighborhood, they were called "skips") meant you were somehow an inferior person, worthy only of scorn and ridicule.

Even as a kid, I recall instinctively realizing how asinine this notion was, and yet the social pressures were such that it was impossible not to buy into this ridiculous narrative. Though my no-name sneakers were perfectly functional, I was mortally embarrassed to be wearing them, as they weren't Pro-Keds, Converse, Adidas or, the holy of holies, the hallowed king of all 1970s boys footwear: majestic blue suede Pumas, called "Clydes" because they were endorsed by Walt "Clyde" Frazier, a New York Knick and all-time basketball great.

Clydes were so out of reach for most of the kids in my blue collar Queens neighborhood that when one of my classmates suddenly showed up wearing a pair, all the rest of us could do was stare, rendered speechless by wonderment and intense envy. Suddenly, this boy who had been strictly middle of the pack was now elevated to the top of the pecking order. We knew it, and, more importantly, he did too, and he fully embraced the part. He was cool, and I was not, sentenced to fourth grade social purgatory by my mortifying footwear.

To my eternal ecstasy, in the summer between the fourth and fifth grades, my dad surprised me with a pair of blue suede Clydes, and on the first day of the fifth grade, I was met with a gallery of the same stunned expression I had worn the year before, the eyes of all of the boys in my class fixed unblinkingly on my feet, an astonished look of shock and awe frozen on their faces. Funny thing was, I had grown so used to wearing the shoes over the summer that it took me a few seconds to realize what had elicited such a reaction. When I finally made the connection, man did it feel good. I found my 10-year-old self almost magically transformed, my blue suede sneakers the elementary school equivalent of Cinderella's glass slipper.

As I grew into an adult, I found this same strange interplay between the inner self and outer perceptions repeated time and time again. In my 20s I was the bohemian rock 'n roll rebel, and my black leather jacket, tight blue jeans, and Spanish healed boots proved it, just like it did for all the other nonconformists I hung out with, who all wore subtle variations of the same exact outfit. Of course, my self-identity wasn't rooted entirely in the clothes on my back, as it was that identity which led me to choose the way I presented myself to the world. The relationship between inner and outer self is symbiotic, each feeding off each other, in a twisting and ever ongoing interplay. Still, I remember slipping into my first black leather jacket, and the giddy sense of self satisfaction that it conferred. I just couldn't have been more impressed with myself.

As more years flew by, the interdependence of what I owned and who I was continued its complex dance. After all, the clothes we choose to wear, the furnishings that decorate our homes, the careers we pursue, the cars we drive, even our mates, all represent the identity we elect to reveal to the outer world. For some, that display is in close concordance with the inner person, for others, it really is a show, a contrivance, some consciously hiding their real selves behind a blinding array of baubles, bangles, and beads. It's important to learn how to recognize these folks, and avoid them, because for the most part they are trouble. They may not actually mean harm, though many do, but the dissonance between their projected self and the inner person very often causes conflict and stress within themselves, and then to everyone around them.

By the time of my MS diagnosis at age 39, the interplay between the inner me and the objects I selected to represent myself to the outside world were a finely woven fabric. Unless a person chooses to live a monastic lifestyle, this meshing between the inner and outer, given the hyper consumerist world we live in, is inevitable. Even the monk, with his threadbare cloak and vow of poverty, has chosen a lifestyle that is a statement to the outside world. After all, one can be threadbare, poverty-stricken, and pious without advertising it by taking an oath and donning a cloak and sandals.

When I was diagnosed with progressive MS, I was many things; a DVD producer, the husband of a lovely woman, the driver of sports cars, a collector of antique watches, a socially active Manhattanite, a sharp if funky dresser (if I must say so myself), a dog owner, and dozens of other labels and projections that influenced not only how others perceived me, but also how I perceived myself. Suddenly I had a new tag, Multiple Sclerosis patient, and one with an aggressive form of the disease at that. This new label would soon mushroom and overtake many of my other outward incarnations, as my diminishing physical abilities forced me to give up many self-defining activities and diversions, and rendered many of the objects I once held precious completely and utterly useless.

Like opening a Russian doll within a doll within a doll, the disease, as it whittled away at my physical abilities, forced me to psychologically peel back layer after layer of shifting self-identities. I found that this process is not without pain, as some of those once projected and now obsolete selves were founts of much pride. Some were badges of honor, others bandages covering old wounds. Stripped of outer distractions and contrivances, and in relatively short order forced to "retire" from the working world, I was left to ponder what was left of me in the absence of a lifetime of accumulated pacifiers, identifiers, and diversions. The process can be downright scary, as it leads one to consider one of the crucial questions of the inner universe: at my essence, who am I?

Just as a chemist works to break down complex compounds to discover the individual molecules from which they are made, chronic progressive illness puts a personality under mortar and pestle, grinding away the web of complexities that buffer the core of a person from themselves and from the world at large. As my illness has forced me to adopt a simpler life, it's also brought forth a simpler Marc, living an existence almost preadolescent in nature. Strangely, along with restoring a kind of innocence, the experience has coalesced much of the wisdom I barely knew I had accumulated through the years, in many cases insights that I hadn't consciously realized I possessed at all, many of which would've certainly come in handy when I was healthy. It has allowed me time for introspection, time much needed to digest all of the changes wrought, time required to assimilate both the losses and the gains.

Despite the uncertainties concerning my physical condition, I've discovered an intellectual confidence, and the ability to be alone without being lonely. I often used to crave the companionship of others, even though I frequently felt alone in a crowd. Still, that crowd offered comfort and distraction. Gone is the desire for bright lights and constant action, replaced with the knowledge that the greatest blessing on earth is a quiet night at home with loved ones. Faced with serious illness, all abstraction is stripped from the concept of mortality, and I've come to value quality over quantity. My patience for trivialities, some of which used to consume me, quickly dwindled, and continues to do so.

I find that I value honesty and kindness more than ever, in myself and those around me, and that the person it's most difficult to bestow those two gifts upon is yourself. In the harsh light of progressing disability, past mistakes and missed opportunities become brightly illuminated, and the challenge lies in not only learning from those faults, but also in forgiving yourself for making them. Taking inventory of oneself can be difficult when some of the items discovered in the darkest corners of the soul have been shoved out of sight for a reason. But in confronting them, their negative influences, some of which have manifested for decades, can be weakened and even broken. Although physical limitations may continue to mount, emotional liberation can be achieved.

It is in so many ways a heartbreaking shame that this opportunity at self-knowledge comes at such a dire cost. Without confronting crisis, though, the motivation for such inner exploration is very easily lost among the constantly shifting circumstances of existence. Receiving a serious diagnosis has the effect of pressing the pause button on the ever unfolding story of a life. The emotional process of confronting chronic illness is searing, but it is this conflagration of the soul that allows for the exposing of the essence within. It is a process, I think, that is never fully complete, and as the physical insults inflicted by the disease mount, it becomes clear that it is the journey, not the destination, from which all lessons are drawn.

I will forever curse this creeping paralysis, but at the same time acknowledge the opportunity for self-illumination it has provided. I've rediscovered parts of myself I hadn't even realized I'd lost. Even as my physical abilities diminish, my essence becomes more and more revealed. The battle with the disease continues, bolstered by a refreshed resoluteness of spirit.

Enhanced by Zemanta

Saturday, April 2, 2011

The Accidental Alien

IN SPACE - UNSPECIFIED:  In this handout illus...
Imagine for a second that you're a perfectly healthy, able-bodied person, minding your own business, walking down a quiet suburban street just after nightfall. Suddenly, you are caught in the tremendous vacuum of a strange whirl of blue light, and you feel yourself abruptly whisked right off the face of the planet. Milliseconds later, you find that you've been deposited on an alien world, transported by some kind of rip in the time space continuum. Hey, it's unlikely, but so was Frank Sinatra marrying Mia Farrow. Shit happens…

After getting up and dusting yourself off, you start to look around. Everything seems fairly normal; the sky is blue, the grass is green, and the sunshine feels warm on your face. You walk around for a bit, and although you don't see any of this new place's inhabitants, you do start to notice certain oddities. Approaching a fairly ordinary looking building, you can't figure out how to use the door. There seem to be way too many knobs and buttons on it, and no matter which you twist or push, the door won't open. You see vehicles on the street, which you recognize as the equivalent of automobiles, but looking in their windows, none of the controls are recognizable. As you make your way towards what appears to be the center of town, you come across a variety of objects that seem familiar but at the same time odd, all of them somehow strangely complex.

You turn a corner onto the main drag, and are shocked to see the residents of this peculiar new world. They have the familiar head and torso of a human being, but instead of two arms, they have four, and on the end of each arm is a hand with 10 fingers. They also have four legs, two pointing forward, and two pointing back, but are able to orchestrate all of these extra limbs with perfect fluidity and grace. Oddly, they notice you, but don't really make too big a deal out of your presence. Certainly, they make no move to harm you, and in fact seen kind of indifferent to you.

After composing yourself, you head for what looks to be a restaurant, and walk through the propped open front door. The scene inside is stunning, the place is filled with these eight limbed, 40 fingered creatures, drinking, eating, and having a good time, while using a variety of exotic tools and utensils that require the use of all of those extra arms and hands and fingers. You take a seat, but it's hard for you to get comfortable, because the chairs and tables are designed to accommodate two extra legs and feet, and the menu is almost impossible for you to open, it's many folds and pages meant to be manipulated by folks with a whole bunch of extra extremities.
Overcome with anxiety, you bolt to the bathroom to splash your face with some cold water. Luckily, the door simply pushes open, but once in the bathroom you find an almost impossible to understand array of gadgets and fixtures, all of which require the use of more extremities than you possess. As you explore the rest of this world, the situation repeats itself over and over again. Everything appears frustratingly familiar, but actually using any of this planet's devices is damn near impossible, all having been designed for beings with abilities far beyond your own.

The above describes the feelings and situations I often experience as a disabled person here on earth. I find myself stuck in a world in which I can no longer easily function. Amidst an abundance of gadgets, conveniences, and everyday items that require ten fingers, two hands, two arms, two legs, and two feet, I find myself at times helpless.

A knife and fork are terrific tools for carving up a meal, unless you're reduced to only using one hand, in which case a fork without its trusted companion, the knife, becomes an instrument of frustration and dismay. Zippers, buttons, shoelaces, and socks might as well be Rubiks cubes, there's no way I'm ever going to figure out how to use them. Showering with one side of your body completely disabled requires creativity on the level of Picasso and the stamina of a triathlete. I spend my days adjusting to life in a world designed by and for creatures with abilities that are now far beyond my own. And since the upshot of having a progressively disabling disease is that it progresses, with new disabilities layering upon older deficits, the act of adjustment is a perpetual process. Settle into one routine, and soon enough that routine is no longer routine, and it's time once again to adjust.

We live in a hyper materialistic society, consumer goods being dangled in front of us by a whirlwind of marketing and advertising. When I was able-bodied, I was as much a sucker for the siren call of the newest, shiniest, and brightest as the next guy. I'd satisfy my cravings for one car, only to have my consumerist fires stoked a few months later by a fancier or faster new model. These days, I could just as easily will myself to fly as to drive a car.

On the corner of my street is an Apple Store, with lines of anxious consumers often snaking down my block, all eager to get their fully functional hands on the slickest and most ergonomically designed doodads thought up by Steve Jobs and crew. Ergonomically designed? Ha! As far as I'm concerned, most of those devices might as well be made out of barbed wire and broken glass, as my one-handed approach just isn't going to cut it with the latest super iThing.

I turn on the TV and have to laugh at the endless stream of commercials for products that are impossible for me to use. Cars and shoes and exercise devices and electronic thingamajibs of all kinds, some of which I might have formerly found irresistible, but which now hold all the appeal of a burning stick. What the hell am I going to do with an Ab-Cruncher or Shake Weight? I understand that these commercials and advertisements were not meant for the likes of me, but living with disabilities has ripped the veil of consumerism from my eyes, and allowed me to see just how crass and blatantly manipulative are all of these efforts to get folks to mindlessly buy, buy, buy. I mean, does anybody really need an Ab-Cruncher? For goodness sake, if you absolutely must have those sixpack abs, just do some freaking situps and give your Ab-Cruncher money to the charity of your choice, where it might do some actual good.

I am what is known as a "collector". I'll fixate on some items of interest, usually something antique, and start obsessively collecting them. I have collections of old postcards, vintage fedoras, old New York City travel guides, and World's Fair paraphernalia, among others. When I was healthy, my biggest collecting obsession, by far, was antique wristwatches. I loved them, was fascinated by their intricate mechanical workings, learned the history of their various manufacturers, deeply appreciated the craftsmanship and art that went into making them, and spent huge gobs of money on them. I wound up with a collection of over 50 of the suckers, most from the 20s and 30s. Many have inscriptions carved into their backs, often dedications from loved ones, or sometimes just a person’s name or initials. These inscriptions would fire my imagination, and I'd picture the circumstances under which the watch was bought and treasured by some long-ago person.

I delighted in in the fact that my collection was actually functional, and I loved wearing a different watch each day. They became my trademark, friends and family often asking about my "watch of the day", and if they showed genuine interest, I'd happily take the watch off, pry open the back, and display the carefully constructed mechanical "movement", gleaming artfully polished metals and gears working in intricate orchestration, proof that in some far-off time it not only mattered what something looked like on the outside, but on the inside as well.

Now, due to my disabilities, what were once my most prized possessions sit up in a closet, hardly looked at for several years. In my current state, I couldn't wind a watch, set the time, or even fasten the leather straps to my wrist. The collector in me still likes knowing that I have them, and from a financial point of view, they've appreciated in value, but in many ways my watches have come to represent the alien I have become on my own planet. Yes, the proof of my otherworldliness quite literally surrounds me, in almost every commonplace item I encounter. But there's something about those watches that sums up my predicament, objects once so treasured now reduced to symbols of the toll my disease has exacted.

Of course, my illness has led to fits of remorse, some of them quite intense, but it's also led me to fully grasp that the worth of a person lies not in the objects they possess, their outward grace and elegance, or their physical beauty or prowess. The true worth of a human being lies far, far deeper, in their essence, their spirit, their soul. Though this disease is a curse, it has led me to befriend some of the finest people I've ever known, people who likewise have been stripped of all the adornments and material goods too often used as armor and camouflage in the land of the healthy, people who have nothing to offer but the kindness of their hearts and the keenness of their minds. We may be unwilling aliens here on planet Earth, but in our shared state of otherness I've learned the values that make us truly human.