Tuesday, November 29, 2016

Please Vote! – Wheelchair Kamikaze Nominated for Best Healthcare Blog Award

 
 

I'm proud to announce that Wheelchair Kamikaze has been nominated for "Best Healthcare Blog" in Healthline.com's annual best blog awards contest (click here). The winner of the contest will be decided by the votes of none other than the readers of the nominated blogs.


In fact, the nominations also came from blog readers, though I have no idea who nominated Wheelchair Kamikaze. I was completely unaware that the nomination process had begun, so I swear it wasn't me who proffered the nomination. But some very nice person or persons were kind enough to throw Wheelchair Kamikaze's name into the hat. Thanks, whoever you are. I had my suspicions as to who might have been the culprit, but my mom swears it wasn't her. Still, I have my doubts. When I was 26 years old she submitted a poem I had written in the third grade about how wonderful she was to the local Fort Lauderdale newspaper, which printed it – along with a hideous picture of me at eight years old, complete with coke bottle glasses and hair that looked like it was styled in a blender – on Mother's Day. This was just a few months after I had moved to the area and was just beginning to form a circle of friends. The day it was published was the day I learned how to spell "mortified".


Anyway, Healthline's Best Blog contest is decided by votes, so I'm asking all who appreciate these pages to cast a vote for Wheelchair Kamikaze (click here). As a matter of fact, you can cast more than one vote, since the rules allow for each person to vote daily. So, as they say in Chicago, vote early and vote often.


The voting actually started on November 21, so I'm a little late to the game because I've been engaged in hand-to-hand combat with some new and particularly unpleasant MS related crap. I'm like the butcher who backed into his meatgrinder and got a little behind in his work. Okay, just for dusting off that moldy oldie – which had them rolling in the aisles 60 years ago on the Borscht Belt (click here) – I think I deserve a vote or ten. And just my bringing up something as random and esoteric as the Borscht Belt should also be a vote-getter. Am I not just the most adorable thing… I'm not competitive or anything, but world domination has always been high on my bucket list. Today the blogosphere, tomorrow the world!


Healthline.com is offering a very generous $1000 prize to the winner of the contest. If I do win, half of the prize money will go to a worthy MS nonprofit, and it won't be the NMSS. Hey, here's an idea: I'll run a poll on the blog about which nonprofit should get the donation, on behalf of all of us. Won't that be fun? Voting ends on December 12, and, as I previously said, people can vote each and every day until the end of the voting period.


In all seriousness, writing Wheelchair Kamikaze has been one of the most rewarding experiences of my life. The fact that I've been able to help some of my fellow travelers on this rocky road that we've all been forced to follow leaves me humbled and grateful. The blog has allowed me to meet and interact with some of the bravest, most resilient, and remarkable people I've ever known, each fighting their own personal MS battle with immeasurable bravery and fortitude even in the face of the incomprehensible confusion and fear engendered by the disease. Wheelchair Kamikaze has given me a sense of purpose through my own struggle with the madness of Multiple Sclerosis, and I'm fairly certain I would not have made it this far without the support I have received from readers all over the world, many of whom have offered words of encouragement, kinship, and thanks that have more than once brought me to tears. I thank you all from the bottom of my heart.


If you care to cast a vote, please (click here). And once again, an immense thank you to each and every person who has helped make Wheelchair Kamikaze successful beyond my wildest dreams. I simply don't have the words to express the feelings I have for every patient, caregiver, and medical professional who has participated in WK these past seven and half years. What all of you have given me is simply priceless. And no contest win or lose will ever change that.


If you do vote, please use the search box on the contest page (click here) to find Wheelchair Kamikaze, as there are 383 blogs in the contest.


Thanks again for your support.




Addendum:  Thanks to everyone who has already voted. Don't forget, you can vote every day until December 12.


I understand there are several hoops you have to go through to vote. First, you need to find my blog among the list of 383 blogs that were nominated. The easiest way to do this is through the search box on the contest webpage, and just search for "wheelchair". This way you don't have to try to figure out how to spell Kamikaze, and the search engine will bring you right to my blog.


After you enter your email address and vote, you need to scroll up the page to find the little "capcha" box to prove you're not a robot. Then you will get a confirmation email on which you need to click a link to confirm your vote.


Geez, guess they must be super worried about voter fraud or something. It's easier to vote for president…




Friday, November 18, 2016

Why Must It Be So Damned Hard To Be Sick?

I’m fully aware that the concepts of “fair” and “unfair” are constructs of the human mind. Politely stated, stuff happens. We then process that stuff and sort it into any number of mental files, “fair” and “unfair” being but two of the many choices in the filing cabinets we all carry around in our heads. Yeah, it seems unfair that I got slammed with the MS stick, but so did 400,000 other people in the USA. It’s also unfair that I wasn’t born into British royalty, but, given my proclivity for drunken shenanigans, the royal family might think it unfair if I was. Then again, I’d probably fit right in…

That said, I do think it is unfair that people socked with chronic illness are forced to not only deal with the ramifications of their diagnosis but also with a medical infrastructure that often seems geared towards making being sick as difficult as possible. It’s as if having a terrible illness isn’t quite enough; most patients soon find that on top of their condition come layers of impediments that seem designed to make being infirm an exercise in frustration, aside and apart from the effects of the disease itself. Primary among the contributors to the difficulties encountered by the chronically ill are insurance companies, pharmaceutical companies, and the doctors who treat the illnesses themselves, an interlocking triumvirate that oftentimes seems intent on destroying the peace of mind of those unhappily forced into its grip. Let’s look at each of these elements individually, and explore the many fangs of this three-headed beast. 

First, we have the insurance companies, which are generally perceived as big, boring, faceless monoliths filled with human automatons making love to their spreadsheets and actuarial tables. The reality of the insurance industry is a bit different, though. Insurance companies are professional gamblers who look at the entire world as one big casino. By fastidiously crunching data accrued over centuries, insurance companies place bets tilted in their favor on almost every aspect of life, including life itself. 

In the case of the health insurers, the primary wager placed is that the money paid to them by the mostly healthy people they insure will far outweigh the money the company needs to pay out when the bet goes wrong and their customers get sick. Like any gambler, insurance companies hate to lose. When their wagers go south, they’ll shamelessly employ any number of unsavory tactics in an attempt to minimize their losses. For patients forced to deal with insurers who aren’t keen on making good their part of the wager, this means having to navigate intricate bureaucracies who play by rules largely of their own making, utilizing tactics designed to discourage and dismay those trying to get their fair due. 

Primary among these strategies is simply to delay making payments in the hopes that the patient will grow so incredibly frustrated they’ll eventually throw up their hands and give up. Insurers do this by putting as many obstacles in the way of the patient as possible, in the form of a labyrinthine paths to payment filled with large amounts of paperwork, endless requests for additional information, and a wall of bureaucracy meant to intimidate and appear impenetrable. Is there any less savory prospect than having to get on the phone with an insurance company representative to try to resolve a claim that the insurance company has arbitrarily denied? I’d rather try to brush my teeth with a flaming stick. 

In the nearly 15 years since my diagnosis, I’ve spent countless hours on the phone doing battle with insurance company demonoids intent on frustrating my every attempt at having them make good on their obligations. Requested paperwork, once delivered, is often mysteriously “lost in the system”, requiring it to be refiled all over again. Claims are passed from department to department in an apparently endless loop, with each department introducing a new set of rules and requirements. The phone reps themselves are not empowered enough to actually take any actions, meaning that most of what is said to them is simply wasted breath. Aargh! 

The key to getting eventual satisfaction (not to mention the money owed to you) is to never give up, even if it feels like your brain is about to blow through the top of your skull. In the words of Winston Churchill, "Never surrender!" If the phone rep is unable to give you a satisfactory answer, demand to speak to their supervisor. If that supervisor is uncooperative, demand to speak to their supervisor. Eventually, if it seems that you have run out of people to talk to, threaten the nuclear option: tell them you are going to get your state insurance regulators involved. This will usually lead to a miraculous resolution of your case. Unless of course you live in a state with lax insurance regulations, in which case you might try making hyena noises into the phone. 

Of course, one of the reasons the insurance companies are so loathe to make payments is the outrageous costs of medical procedures and pharmaceutical products. This brings us to the second member of our triumvirate of torture, the pharmaceutical companies. Contrary to popular belief, the pharmaceutical companies themselves are not inherently evil, they just smell that way. The first thing to keep in mind when thinking about the pharmaceutical industry is that pharmaceutical companies are not in business to produce cures. This may be difficult to grasp at first, but truer words were never spoken. Except maybe “never eat enchiladas after midnight”. The indigestion will kill you, and you've got enough problems. 

All of the major pharmaceutical companies are public companies, meaning that their stock is traded on the public stock exchanges. As officers in public companies, pharmaceutical executives are mandated by law to be beholden to their shareholders, not to the patients taking their drugs. The importance of this point cannot be overemphasized. Given this reality, a company making billions of dollars on a drug designed to treat a disease could potentially run afoul of their stockholders (and the law) if they came up with a drug that cured the goose that lays perpetual golden eggs. This is a classic conflict of interest. 

The tremendous profitability of "successful" pharmaceutical products has led Big Pharma to engage in many morally questionable activities. Believe it or not, more money is spent on marketing pharmaceuticals than is devoted towards the research and development of newer and presumably better drugs. Since the pharmaceutical companies themselves fund most late stage medical research – they are the only entities with enough money to do so – negative research results are often suppressed and never see the light of day. This means that the research our doctors rely on when making treatment decisions is inevitably skewed towards the positive. Supposedly independent research has often been found to have actually been written by ghostwriters in the employ of Big Pharma. The pharmaceutical lobby is one of the most powerful in Washington, practically ensuring that most of these ills never get properly addressed by our lawmakers. 

Having said all of that, the most insidious and pernicious way the drug companies impact patients themselves is their ongoing practice of bribing doctors to prescribe their drugs. Naturally, these bribes are dressed up in all manner of tuxedos and ball gowns, taking the form of “honoraria” or “consulting fees”. Doctors are paid copious sums to “educate” their fellow physicians, most often over expensive dinners at fine restaurants. Physicians are invited to “educational symposiums” which take place at luxurious resorts where most of the education seems to come in the form of 18 holes on a golf course. In one of their latest ploys, pharmaceutical companies ask doctors to fill out surveys which earn the physicians points that can be redeemed for all sorts of luxury goods (click here). 

How and why are these practices not illegal? Got me. Before MS forced me to retire, I worked in the music industry for one of the largest multinational entertainment companies in the world. If our company was caught paying radio stations to play the records we produced, people would go to jail. Now, what is more harmful to society, music companies paying off DJs, or drug companies paying off physicians? 

Thankfully, patients now have a resource by which they can find out just how much money their doctors are taking from pharmaceutical companies. The website “Dollars for Docs” makes it easy for patients to look up their doctors and find out exactly how much pharmaceutical company money their doctors pocketed from August 2013 to December 2014 (click here). I’m happy to say that my neurologist doesn’t even allow pharmaceutical company representatives into his clinic, and the fact that he doesn’t appear on the Dollars for Docs database confirms this. If your doctor does show up on the database and has pocketed tens of thousands of dollars of pharmaceutical company largess, it’s certainly within your rights to question them as to how these payments influence their treatment decisions.

Which leads us to the final element in our trilogy of torment, which, tragically, is often our physicians themselves. This is by far the most heartbreaking component of the obstacle path patients with chronic illness must navigate, as our doctors should be sources of comfort and care, not necessary evils. I consider myself extremely fortunate to have as my neurologist a man I not only respect but for whom I also have a very real affection. And I’ve every reason to think that the feelings are mutual. Sadly, in my contacts with literally hundreds of MS patients since I started this blog, I’ve found that the clear majority have a negative relationship with their neurologists, with feelings ranging from mild apprehension to utter disdain. 

As patients saddled with chronic illnesses, we are forced to enter long-term relationships with the doctors we choose to treat our conditions. As with any long-term relationship, it’s important to choose a partner who will be a positive in your life. And yes, I did say partner. The patient-doctor relationship should be a partnership, not a dictatorship. The patient should be respected and educated by their doctor, not talked down to or given orders without any explanation. 

Oversized egos seem to be abundant in those who don white coats and endeavor to be healers, and I suppose a certain amount of ego is only to be expected given the often daunting professional path taken by those who choose to treat intractable illnesses. But, contrary to what many of them seem to believe, doctors are not gods, and the fact is, just as in any profession, there are those who are great at their jobs and others, not so much. There’s an old joke that asks “What do you call someone who graduates from medical school with a C- average?”. The answer: “A doctor”. 

For patients with serious illnesses, it’s easy to feel at the mercy of the person we desperately hope will relieve the burden of our disease. Sadly, I’ve heard far too many stories of supposed MS experts giving patients horrible advice, putting them on treatments clearly wrong for that particular patient, or leaving the patient themselves to make serious treatment decisions while providing little or no pertinent information upon which to base those decisions. 

My first MS neurologist, the man who gave me my diagnosis, was I am sure a brilliant human being, highly respected in his field. Unfortunately, he had the bedside manner of The Great Wall of China, without the scenic views. I was shocked when at the end of our first appointment he handed me four videotapes – each promoting a different MS drug – and told me to go home, watch them, and come back with a decision as to which drug I wanted to try. I was so confused I could barely get a word out. At that point I had barely wrapped my mind around the fact I was seriously ill and knew absolutely zilch about Multiple Sclerosis. I was overwhelmed, frightened, and certainly in no position to pick a drug based on some slickly produced video presentations. Needless to say, this neurologist did not stay my neurologist for long. 

I do realize that in many parts of the country and the world MS specialists are hard to come by, so many patients have a limited choice of doctors. Even in these situations, though, it’s important to make sure that your questions get answered, that your fears and concerns are addressed, and that you are seen as a human being, not merely a body harboring a dread disease. Always remember this: your doctor works for you, not you for them. Just like anybody else you pay for service, your doctor is under your employ, not the other way around. As your doctor’s employer, you are free to fire them if you are not satisfied with the job they are doing. Now, that doesn’t give you the right to be disrespectful, impolite, or tyrannical, and even under the care of a top-notch physician dealing with MS can be a messy affair, both emotionally and physically. You owe it to yourself, though, to become an active participant in your treatment plan, and that means partnering with a doctor you can trust and respect, and whose motivations aren’t subject to suspicions of self-interest. If your current doctor fails to meet those criteria, I suggest you start looking for a new one. 

In short, being sick sucks. Not only do we have to deal with the ravages of disease itself, but also with all sorts of ancillary BS that makes life for those unfortunate enough to be stricken with chronic illness exponentially harder. Between the insurance companies, pharmaceutical companies, and some physicians, the impediments faced by those with serious illnesses can be almost impossible to confront. And yet confront them we do, with a quiet heroism that goes almost completely unacknowledged. 

The myriad obstacles thrown at people with serious illness are by and large beyond the comprehension of the healthy, as one cannot fully understand just how dysfunctional the modern medical establishment is until one is thrust into the belly of the beast.. We who are members of a club that none of us wanted to join share insights and experiences that are ours uniquely. As WC Fields famously said, all in all I’d rather be in Philadelphia…     



For those readers who might enjoy an MS essay of a more philosophical bent, my friend Mitch, who maintains the MS blog Enjoying The Ride, wrote a wonderful piece on acceptance in the face of ongoing disease progression (click here).     



RIP Leonard Cohen, who died last week at age 82. One of my favorite songwriters, I think he’s pretty much the man I always wanted to be. Though this isn't one of my most cherished of his compositions, this song is quite apropos for the times in which we now find ourselves…  

                   
                     

Thursday, September 22, 2016

How?

Given my tendencies towards intense introspection, I find it hard not to dwell on the “why’s” of my disease. Primary among these why’s is “why me?”, a question infused with self-pity that I know is best left unprovoked. I could quite easily drive myself half mad trying to figure all of the angles involved in this ultimately unanswerable query. If I’d made some different decisions in the past, might some alternate life path have avoided the Multiple Sclerosis landmine? Or would all roads eventually lead to Rome?

When I have allowed myself to stray down this tangled trail, a nasty battle always breaks out between my Buddhist and existential leanings, my inner Siddhartha calmly stating that there is no such thing as coincidence while my inner Jean-Paul Sartre screams back that life is nothing but an exercise in randomness. Nothing like a philosophical brouhaha roiling around inside the noggin to ruin what might have otherwise been a decent day. In the end, these thought kerfuffles inevitably lead me to counter the “why me?” conundrum with its other half, “why not me?”. This seems to temporarily satisfy both Siddhartha and Sartre, forcing them each to retreat back to their own little corners of my mind, where the Buddha sits in quiet meditation and Sartre drinks and smokes his brains out.

I have of late been giving more thought to the “how’s” of my illness, as in “how the frack did I get so sick!?!?”. Whereas the “why” question deals more with the metaphysics of the situation, the “how” is focused more on the nuts and bolts of the disease mechanism and the circumstances that led to my getting ground-up in its gears. At first glance the “how” might seem as insoluble a question as the “why”, but by sizing up what we know about the disease and matching it with the circumstances of my own life I think I’ve come up with a reasonably plausible explanation for how I got from point A to point B (and the B stands for “Blechh”).

It’s long been suspected that Multiple Sclerosis and other so-called autoimmune diseases have strong genetic components. As scientists have begun to unravel the human genome, more and more genes have been discovered that seem to play a role in the Multiple Sclerosis disease process (click here and here). While many patients might not be able to isolate their own genetic susceptibility without a complete mapping of their DNA, in my case the genetic connection is actually quite clear.

My mom developed gestational diabetes when she was pregnant with me, and unlike the vast majority of such cases, her illness did not resolve after I was born. Stranger still, her malady turned out to be type I diabetes, otherwise known as juvenile diabetes, by far the most serious form of the disease. Type I diabetes is thought to be caused by an autoimmune attack on the pancreas, leaving it unable to produce insulin. A shake of my mom’s family tree revealed that her grandfather and uncle also had type I diabetes, indicating that there is certainly a genetic trait for the disease being passed down from generation to generation. Research has shown that the children of diabetics have a 50% greater chance than the general population of developing some sort of autoimmune disease, and here I am with not only MS but also Hashimoto’s thyroiditis, an autoimmune disease that destroys the thyroid gland. It is also suspected that I’ve had an autoimmune attack on my pituitary gland, and for a while the doctors thought I had discoid lupus, an autoimmune disease that attacks the skin.

Of course, simply having the genetic predisposition to develop a disease doesn’t on its own guarantee that a person will get sick. Given my family history, it’s likely that many of my relatives share these same funky genes, and none of them, to my knowledge, have developed diabetes, Multiple Sclerosis, or any of the other usual suspects (lupus, rheumatoid arthritis, Crohn’s disease, etc.). Somewhere along the line something needs to trigger the genetic susceptibility for disease to take hold, in effect turning the “sick genes” on. In the case of MS, scientists have long focused on the Epstein-Barr virus (EBV), a member of the herpes virus family, as a likely disease trigger.

Epstein-Barr virus is the nasty bug responsible for mononucleosis, although most people infected with EBV never do develop Mono. Instead, the initial infection can manifest as a severe cold or flu, and a person can often be infected without having any symptoms at all. Once infected with EBV, the virus stays within a patient’s body for the rest of their lives. Infection with Epstein-Barr virus is so common that it’s estimated about 90% of the adult population harbors the virus. Astoundingly, though, it’s been found that 100% of MS patients are infected with EBV. That’s right, 100%. The correlation is so high that some researchers have stated that “people who are not infected with Epstein-Barr virus do not get MS” (click here).

Sure enough, blood tests have revealed that I am indeed infected with EBV. Of course, since the vast majority of adults are also infected with Epstein-Barr virus, the virus alone can’t be the cause of Multiple Sclerosis. In conjunction with a genetic susceptibility, though, the virus may be the thing that tips the scales between health and illness.

It’s interesting to note that in its dormant state, Epstein-Barr virus takes up residence within the immune system’s B cells. Just so happens that some of the MS disease modifying drugs destroy a patient’s B cells, thereby ridding the body of much of its EBV load as well. The interferon drugs (Rebif, Avonex, Betaseron, Plegridy) also happen to be very strong antivirals. Could it be that these drugs work, at least in part, not because of their immunosuppressive or immunomodulating properties, as is commonly believed, but because they are attacking EBV in the bodies of MS patients? Not a mainstream idea to be sure, but something I think worth considering.

Epstein-Barr virus isn’t the only infectious agent that has been linked to MS. The bacteria responsible for many sinus infections have been implicated in the disease as well (click here and here). I’ve suffered from sinus infections most of my life and had endoscopic sinus surgery in 2006 to try to eradicate the problem. Unfortunately, the surgery only helped temporarily, as my sinus problems reemerged soon afterwards. So I’m two for two when it comes to possible infectious triggers for Multiple Sclerosis.

Actually, make that three for three. Exposure to toxic molds and funguses have also been linked to neurologic and demyelinating diseases (click here), and back in the 1990s, when I was living in South Florida, I spent two years working in a building that was found to be riddled with toxic molds and bacteria. At the time I was employed by a startup company, and after a few months working in their very crowded offices the company moved into a larger building that had been empty for quite some time. The facility was in pretty bad shape, with wires dangling out of the decrepit ceiling panels and a musty smell hanging in the air. Simply walking into the place felt unhealthy.

After spending about a year and a half working within those walls it was revealed that upper management had been sitting on an environmental report which stated that the building was riddled with a smorgasbord of toxic microorganisms. The sons of bitches in the executive offices had kept the report hidden until one of their administrative assistants copied it and left it on the desks of several employees. Soon after, men in hazmat suits came and sectioned off parts of the building as they decontaminated the place section by section. In retrospect, my first weird symptoms started cropping up while I worked in that building, and last year when I was tested for exposure to toxic molds the results came back positive. Wonderful.

Stress is another factor that has been linked to MS and similar diseases. Many MS patients report their first symptoms after periods of acute stress, and it’s been demonstrated that stress can bring on relapses in those patients suffering from Relapsing Remitting Multiple Sclerosis (click here). Though I’d always been neurotic and prone to worry, my years in South Florida were especially filled with stress, both of the acute type brought on by upsetting life events, and long-term simmering stress engendered by living in a place where I always felt like a stranger in a strange land.

My periods of acute stress were almost always initiated by the breakup of romantic relationships, which I inevitably took much harder than was even remotely reasonable. Losing a long-term girlfriend more often than not sent me into a period of prolonged psychological agony, during which I’d lose weight, sleep, and sense of self for months and months at a time. Yes, I know it’s hard to believe that any woman would leave a fella as oozing with charm as me, but lo and behold, there were a few who unceremoniously gave me the gate. And when they did, I imploded. Seems I had an incredible knack for zeroing in on precisely the women who would be most toxic to me and then fall for them, hard. I believe the accepted psychological term for a person who habitually engages in such behavior is “jackass”.

Soon after one breakup in 1997 I suffered from incredibly severe headaches for about three weeks, super intense searing headaches that emanated from the base of my skull and left me damn near completely debilitated. Now my MRI images reveal my one big juicy MS lesion at the very top of my spine right beneath my brainstem, precisely at the spot from which those headaches seemed to radiate. Could it be that those headaches of old were somehow involved in the formation of the lesion that is at the root of my current neurological mess?

The latter five or six years of my stay in South Florida found me enmeshed in a kind of simmering, low-level stress brought on by trying to be someone I wasn’t. I spent that time working in extremely corporate environments, shirt and tie type places that I found to be soul stifling. Though I had creative jobs within those organizations, the stress of trying to conform with corporate culture took its toll. I had once sworn I would never join the 9-to-5 workaday world, but there I was, sending myself off to prison each and every day.

Though I made several very close friends in Florida and was never wanting for a social life, I always felt somewhat alien there, my aesthetics and values simply at odds with the place and most of its inhabitants. Still, for reasons I can’t fully explain, I remained living in a place I couldn’t stand while working at jobs I hated until one final romantic breakup mercifully sent me packing back to New York, where I rediscovered the me that I’d almost forgotten existed. And then, just a few years later, the beast that had been showing glimpses of itself for years finally reared its ugly head, and I was diagnosed with MS.

There then is the “how” of my disease, as best as I can figure. Genetic predisposition? Check. Exposure to infectious triggers? Check. Periods of stress, both acute and long-term? Check. Now, if only there was some way to uncheck some of those boxes. Researchers are just starting to try to figure out how to address the genetic aspects of disease, and many biotech startups are attempting to develop gene therapies for a variety of illnesses. Scientists are working on vaccines for Epstein-Barr virus, but the work still seems to be in its early stages (click here). And though life will never be free of stress, individuals can learn techniques such as mindfulness and meditation that can help them make better life choices and reduce the impact of stress on their existence.

I wish I could say that figuring out how I got sick brings with it some sort of gratification. I suppose that on a purely intellectual level fitting the puzzle pieces together into a somewhat coherent picture is a teensy weensy bit satisfying. Then again, all of my conjecture may be completely wrong, my illness due more to the evil eye put on me by a Gypsy beggar I once crossed than to the elements identified by my keen analytical powers. Perhaps it was my destiny to wind up the Wheelchair Kamikaze, and no matter what choices I made, all roads would’ve converged at point B (as in B, for “Barf”). Okay, I’d better stop this thought train before Siddhartha and Sartre square off and pelt each other with rocks and garbage in the deepest recesses of my brain pan…

Thursday, August 18, 2016

Persistence of Hope, Persistence and Hope

We must free ourselves of the hope that the seas will ever rest. We must learn to sail in high winds.
– Aristotle Onassis

Of late I’ve been navigating choppy waters, my physical problems becoming ever more pronounced and complicated, the progression of my disease along with its attendant disabilities charging ahead relentlessly. At this stage of the game I’m fully aware that there are no easy answers forthcoming. In addition to my ever-increasing crippling neurologic deficits, my highly dysfunctional endocrine system continues to defy explanation and remedy, and – as if these previous two beasties weren’t enough – a hideously painful degenerative bone disease called avascular necrosis has shattered both of my hips and shoulders, a condition which exponentially decreases my already gutted quality of life. The kicker is that the avascular necrosis is a rare side effect from the high doses of IV steroids I was given early on in my MS career in attempts to forestall the progression of the disease, and I was probably all the more susceptible to the condition due to my then largely misunderstood endocrine problems. This tangled web of maladies seems symbiotic. Each multiplies the problems caused by the others, forming a devilish trio that has me directly in its sites.

Still, even as the body flounders my spirit soldiers on, admittedly bowed but still unbroken. Though on an intellectual level I’ve long recognized the ruinous damage that can be wrought by progressive MS, I honestly never imagined or expected that I’d reach the level of decrepitude at which I now find myself. Given my extensive laundry list of failed and failing body parts, at this point there are moments when I realize how easy it would be to simply throw in the towel. Instead, I choose to continue the fight, and even in the midst of my ongoing crises of spirit and body, I can’t help but wonder, why? What is the nature of the spark within that steadfastly refuses to be doused?

When I was a little boy I had great fun rummaging through piles of old family photos with my grandmother, visual relics haphazardly collected in a variety of well-worn boxes stored up in her bedroom closet. It seemed there was a story attached to each image, and I delighted in seeing my adult relatives as their much younger selves in long ago moments forever frozen in time. I knew most of the people in the pictures, but there were of course photos of people I had never met; people who had died, old friends who had drifted away, or folks who had otherwise been lost to time.

Among the oldest photos in this treasure trove were yellowed, cracked images of my European ancestors who hadn’t migrated to the United States at the end of the 19th century. I remember staring at these pictures especially intently, and I vividly recall seeing one small boy with whom I bore a striking resemblance. Because of this resemblance I felt a strong bond with this mysterious person, so distant from me in time and place. As a young boy I couldn’t help but be mesmerized by this reflection of myself in a photo more than half a century old.

When I first saw these ancient photos of my ancestors I was quite young, maybe five years old, and when I asked what happened to the people in them my queries were always met with a strange silence. When I asked again just a few years later, though, I was finally told that those who had lived long enough to see the outbreak of World War II had all been murdered, victims of the Nazi Holocaust. Naturally, this news had a profound effect on me. Though I don’t think the message was ever explicitly communicated, I knew in my bones that part of these people still lived in me, their blood running through my veins. As I grew older I came to feel that my very existence somehow defied the horrors that had been visited upon them, and that my life represented a victory over those who had inflicted unthinkable evils on my long lost relatives.

I was brought up with virtually no religious training, and frankly don’t have much use for organized religion, but I do culturally identify quite strongly with my Jewish heritage. Early on I developed a keen interest in the Holocaust. As I learned more and more about the realities of camps like Auschwitz, Treblinka, and Sobibor, I often wondered how anybody could have survived the raging inferno of daily life in those malevolent places, the level of depravity inflicted upon those imprisoned within them beyond description by the words of any language. Some inmates survived years in those camps, month after month spent subjected to endless horror. What is it that resides within the human spirit that keeps alive the will to live, to make it through just one more day despite being trapped in a world in which wholesale torture and murder are rendered banal? The atrocities inflicted upon these people and to which they bore daily witness defy understanding in any rational sense, and yet the sheer determination to live stood strong.

When I first started my career in TV and video production I was living in South Florida, then home to more Holocaust survivors than any place other than Israel. In one of those odd coincidences that mark the path of life, one of my first assignments as a Producer at a local cable company was to help document the testimony of survivors by recording their stories on videotape. My role was to man the video control room of our studio, choosing between camera angles using a device called a switcher while on our soundstage a professional interviewer led each survivor through their narrative, parts of which many of the survivors had never before spoken a word.

Though I participated in at least a dozen of these interviews, the experience was always emotionally wracking. In each instance an elderly grandmother or grandfather would arrive at the facility, by all appearances just like every other senior citizen retired to Florida, save for the numbers invariably tattooed on the forearms. Each interview started off rather routinely, the survivors telling tales of everyday life with their families in small towns or big cities located all over Europe and Russia. Soon though their stories took a dark turn, and out of the mouths of these sweet old people poured forth depraved accounts of heartbreak and cruelty that left all who heard them at first aghast and then in tears.

The experiences recounted included first hand reports of babies ripped from the arms of their mothers and killed before their eyes, friends expiring in boxcars so packed that there was no room for them to fall, and parents calming toddlers even as they were led to the gas chambers. One elegant lady lost all semblance of composure as she told of being shot and dumped into a mass grave, only to survive and crawl out from under a tangle of corpses when night fell. Many told of the heroism of the Gentiles that tried to save them, beacons of light shining through the some of the darkest hours civilization has ever known.

When asked how and why they were able to endure their ordeals from one day to the next, even in the most desperate of times when thoughts of liberation and freedom seemed folly, practically every one of the survivors answered that their primary reason for clinging to life was the burning hope that at least one person survive to bear witness to what happened, so that the millions of dead would not have died in vain and that mankind would never forget and let it happen again. Thus, the sheer act of living became one of rebellion, a blow struck for humanity against a world gone mad.

Now, to be sure, I am not comparing my own predicament to that of an inmate of Auschwitz in 1944, except for perhaps one tiny commonality. In the face of a daunting odds the embers of hope stay lit, even if only in defiance of a state of affairs that on some days seems without resolve. Despite the ravages of my illness and the improbability of my finding anything approaching a cure, something within simply refuses to accept my predicament but must instead fight and keep searching for answers. I am acutely aware that even if my neurologic disease were to suddenly relent I’d still be left with an endocrine system so broken as to be disabling in its own right, and that even if my endocrine issues were then miraculously stabilized I’d need to have my hips and shoulders replaced before I could leave my wheelchair. I’m not a rainbows and unicorns type of guy, but I am an obstinate SOB, and I’m not going down without a brawl.

Since the day of my diagnosis I resolved to face my illness in all of its stark reality. I fully understand that the odds of my being cured are next to nil, but if the medical geniuses could at the very least get me back to where I was five or six years ago when I was regularly out and about terrorizing pedestrians on the streets of New York in my speeding wheelchair, I’d be ecstatic. Even this attenuated wish is likely a stretch, but when my mood turns dark I think of that long-ago child in the pictures from my grandmother’s closet and determine to try to honor those whose blood runs through my veins. I am but a speck on the arc of time, my tribulations worthy of not even a footnote in the history of human suffering. I find this awareness of my own insignificance oddly comforting, a reminder that no person transcends the unyielding torrent of time. I long ago resolved to never let hope eclipse reason, yet despite the twisted knot of crippling ailments that may stack the odds against me, the defiant spark within still burns. Hope and reason are not mutually exclusive; in fact, each balances the other, combining to form a force capable of holding steady even in the roughest of seas.


A note to my fellow MSers: please let me emphasize that my situation is fairly unique in its complexities, a web of rare conditions that seem to feed off of each other. Thirteen years after my initial diagnosis, my doctors are still not even sure that my neurologic disease is MS. As I’ve written before on these pages, my neurologist and I have agreed that in my case PPMS stands for The Peculiar Paralysis of Marc Stecker. Don’t let the details of my situation dishearten you about the prospects of your own. Given the ever accelerating pace of MS research and the advances being made in laboratories around the world, MS patients have now more than ever very tangible reasons for hope. Current treatments have demonstrated in trial after trial that they can positively impact the disease course for many if not most patients, and emerging and experimental therapies now being tested provide the tantalizing promise of completely halting the disease and even repairing damage already done. At long last progressive MS is finally taking its turn as the focus of MS research, it's many mysteries slowly becoming untangled. Of course, for patients suffering from MS answers cannot come fast enough. Although there’s no denying MS remains a terrible beast, there are now more reasons than ever to have faith that this beast can and will be tamed.

Saturday, July 30, 2016

Essence (Repost)

(Yes, I'm still here, but also still in hiatus mode. I know it's been a while, but I have finally started on a new essay, so this will likely be the last of my "blast from the past" reposts of musty old Wheelchair Kamikaze essays. This one was originally posted back in April, 2011, and received a very generous response from my readers at the time. I hope whoever has hung around throughout my prolonged vacation from the blog will find some value in this piece.)

matryoshka_nest Living with progressive Multiple Sclerosis has forced me to contort my mind, body, and spirit in an never-ending exercise in adaptation, as my mounting physical disabilities force me to make my way through an increasingly strange world designed by and for people with fully functional limbs. The manipulations 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 my 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 my 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 of these changes chosen and others imposed. In our hyper 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 styles 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 instinctively realized 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 – gasp – 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 faces wearing 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 just 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 inner 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 with which we decorate our homes, the careers we pursue, the cars we drive, and 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, but for others, it really is a show, a contrivance, some people consciously hiding their real selves behind a purposefully 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 some do – but the dissonance between their projected self and the person within inevitably causes inner conflict and stress which, like a contagion, can soon spread 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 super materialistic world we live in, is just about inevitable. Even the monk with his threadbare cloak and vows 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 sackcloth and sandals.

When I was diagnosed with progressive MS, I was many things; a DVD producer, the husband of a lovely woman, a 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 devoted 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 many of those once projected but 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 revealing insights that I hadn't consciously realized I possessed, 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 being 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 compulsively crave the companionship of others even though I frequently felt alone in a crowd, that crowd offering 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, 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 errors, but also in forgiving yourself for making them. Taking inventory of oneself can be difficult when some of the items hidden 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 narrative of 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.

Thursday, June 30, 2016

Deconstructing Marc (Repost)

(I'm still in "hiatus mode", but lest the world forget all about me I'm reposting an oldie but a goodie, a blast from the past, a "best of". Or is it really just a moldy oldie? Guess I'll have to leave that up to you folks to decide. This essay was originally written and posted in March, 2011, long enough ago that I'd forgotten writing it. Thinking back on those days, it's amazing how much more deconstructing the disease has inflicted, stripping away even more layers of the veneer that 4+ decades of life had applied. The words below still hold true, but I must admit that although I understood on an intellectual level how much damage progressive MS could do, I never really believed that I'd reach the level of disability at which I now find myself. But, here I am, five years later, still making waves. Good on me. I hope you find value in the following vintage collection of Wheelchair Kamikaze syllables.)


BUDDHA
Image via Wikipedia
Multiple Sclerosis is an undeniably destructive force. To various degrees, which change from patient to patient, the disease picks apart bodies, careers, and relationships, intent on scrambling the numberless pieces that make up the jigsaw puzzle that is each human being it touches. As the malady disrupts a patient's physical body, it also forces those afflicted with it to deconstruct themselves emotionally, spiritually, and philosophically as they adjust to the changes wrought by MS. But this deconstruction also forces the patient into a reconstruction, as they gradually shed the self-identifications and the societal expectations that had formally defined who they were, and replace them with a new sense of self that conforms to the ever-changing reality of living with a chronic, progressively disabling illness.

The speed with which this process occurs varies dramatically from individual to individual, as the mutable nature of MS means that no two patients experience the disease in quite the same way. Some can live with the sickness for decades and suffer relatively few setbacks. For these folks, the changes within may be as subtle as the disease itself, barely visible on a day-to-day basis, but more apparent when looked back at from year to year or decade to decade. Other patients, like myself, are hit hard by a more aggressive form of the illness, and adjusting to the physical and mental challenges it imposes requires almost daily manipulations of the mind and body. MS demands a metamorphosis not only from physically able to physically disabled, but from who we were to who we are becoming.

Every person, sick or well, goes through fundamental changes over the course of a lifetime, molded by mounting age and experience. Chronic disabling disease acts as a multiplier for this universal experience, compressing the time span and focusing the intensity of adjustment. The eight years since my diagnosis have seen me undergo changes of seismic proportion, as the landscape of my inner and outer lives have been rocked to a degree I hardly thought possible. Just as residents knowingly living in an earthquake zone are nevertheless shocked when the ground shifts and buildings tumble, people shaken by serious illness are stunned by their being hit with adversity, although we are all aware, even if in the most abstract sense, that accidents, illness, and misfortune are tripwires strung haphazardly across the road of life. Multiple Sclerosis is the kind of horror that happens to other people, we think, not to us. It's a comforting delusion.

After absorbing the initial shock of my diagnosis, for a while life proceeded on almost as if everything were normal. My internal dialogue was changing, as questions about my new disease and the impact it would have on my future were always being sifted, sometimes consciously, sometimes tucked away in the mind's recesses. Initially, my daily routine hardly changed, just as most of those aboard the Titanic, having registered the initial shudder of the ship hitting the iceberg, continued to drink their aperitifs and dance their waltzes, for a few minutes anyway. I got up every day, kissed my wife, showered and dressed, walked the dog, and went to work. There were the usual dinners out, shopping on weekends, socializing with friends. Yes, there was an injection to give myself every few days, but even that held the promise of a sustained normalcy and helped maintain the illusion of control. Soon though, the ship started taking on water; the slight limp in my right leg grew worse, and my right arm became progressively weaker. The descent had begun.

Just as my physical disabilities all too soon demanded attention (an ankle brace, a cane), my sense of self screamed out for contemplation. What had sometimes been a swagger now became a foot dragging limp, the dearly held illusion of immortality replaced by the reality that I was now physically defective and was very likely only going to become more so. I wore a brave face, proud of the fact that my performance at work didn't falter, even as my body did. My well practiced neurotic antics suddenly didn't seem so endearing, and the worries and anxieties that had once consumed me were now rendered trivial, as if a Woody Allen character were dropped into a concentration camp.

This was a new and frightening world I was abruptly required to navigate, filled with its own jargon and customs, a foreign realm of doctor’s appointments, medical procedures, and ever-increasing physical weakness, a place of changed priorities and heartfelt losses, a domain that imposed humility and was best traversed with a keen sense of the absurd. Thrust into this Twilight Zone, I was a character in search of a script, learning my lines on the fly, the psychological and philosophical square pegs that had conformed neatly into the cutouts of my former self now being forced to fit into round holes, requiring them to either be whittled into shape or simply discarded. This disease of the body was also a crisis of the soul, but through the churning turmoil I started to glimpse flickers of clarity, faint at first but soon better defined.

A key moment came when, less than four years after my diagnosis, the disease forced me to go on disability and "retire". Although this cleaving from the working world was jarring and disorienting, it didn't seem as hard for me as it does for some others I've known who've endured a medically forced retirement. Despite the fact that I had achieved a respectable level of success in a highly competitive business, I'd never felt entirely comfortable in the roles I played during my career. I always liked telling people what I did ( TV, video, and DVD production) more than I liked actually doing it, and there were long stretches of my working life during which I felt I had strayed entirely off of my path, even though I wasn't entirely sure what that path might be.

I'd always had literary and creative aspirations, and the everyday grind of life working within corporate organizations, even ones dedicated to creative endeavors, was at best an ill fit. As a youth I'd sworn that I would never get drawn into the workaday world, but like so many who make such declarations, circumstances dictated otherwise. Now, courtesy Multiple Sclerosis, I found myself free, somehow liberated in spirit by the very thing I dreaded most, the insidiously increasing physical disability that was imprisoning my body.

In a case of addition by subtraction, in being forced to let go of the old me I was able to discover the person that lurked within, the person who I might yet be, long buried under years of socialization, expectation, responsibility, and requirement. Like a chef preparing a reduction, intensifying the flavor of a liquid by boiling off its excess, I found that the forced process of peeling back the layers of the person I had become allowed me to find within a truer self, the me that had fed the simmering yearning I'd felt for most of my adult life.

Somehow, Multiple Sclerosis (or whatever I have-click here) thrust me, quite violently, onto a path I'd long given up for lost. I often wonder whether or not I would have still been stricken by MS if I'd had the guts and fortitude to find or fight my own way back onto my path. Was the disease a hammer blow delivered by a universe intent on getting me back on track? Either way, though I despise the disease and the physical toll it continues to take, I like the person I've become much more than the person I was, not so long ago.

It would be nice if the disease would relent long enough for me to fully explore and enjoy this new old road, but over that I have little governance. I can advocate for and educate myself, but the actual healing is out of my hands. The only control I do have is to take the journey moment by moment, focusing on the good contained within each passing now, and accepting the bad as a particularly unpleasant traveling companion. With each day there is night, with each peak there is valley, for every gain there must be loss. Such is the way of nature; such is the way of life…
Enhanced by Zemanta

Sunday, June 12, 2016

Honored

Due to what I can only imagine must be a clerical error, Healthline.com has selected Wheelchair Kamikaze one of 2016’s 23 best MS blogs. Seriously, though, given the explosion in the number of Multiple Sclerosis themed blogs in recent years, being chosen as one of the best is truly an honor. A big thank you to Healthline for choosing Wheelchair Kamikaze to be part of their list.

I encourage all WK readers to check out the other 22 blogs on the list (click here), which range from highly personal pages written by MSers themselves to blogs maintained by some of the leading MS patient advocacy and research organizations. Certainly, all worth spending time perusing.

On another Healthline.com related note, one of the site’s more eclectic MS features is their slideshow of MS tattoos (click here). Healthline is looking for new submissions for inclusion in the slideshow, so if you've got some MS ink you'd like to show off, simply email a clear photo of your MS body art along with a brief description to nominations@Healthline.com with the subject line "My MS Tattoo".

I would send them a photo of my own MS tattoo, but it's in a very private place. Okay, I'll admit it – it's on my schmeckel and it usually just says "MS Sucks". When I'm excited, though, it says "MS Sucks As Much As Anything Can Possibly Suck And Someone Better Cure It Soon, Dammit! ".

BTW, “schmeckel” is a Yiddish word and if the definition isn’t clear enough (click here). For those of you for whom this is a new word, as an introduction to this vital addition to your vocabulary I encourage you to use “schmeckel” in conversation at least three times today. Please report your successes/failures in the comments section of this post.

Uh-oh, is all of this talk of schmeckels inappropriate? Sure hope this doesn’t disqualify me from the Best MS Blogs of 2017 list…

Healthline has also recently released an MS app called MS Buddy for iOS (click here) and android (click here). MS Buddy is quite unique in the MS app universe. It enables peer-to-peer interaction, allowing MS patients to connect with one another and chat via text message on a one-to-one basis.

After downloading the app, MSers fill out a profile detailing age, sex, type of MS, and MS medications, along with a “break the ice” question to be presented to your potential new MS Buddy (hint: probably best to leave any references to schmeckels out of your "break the ice" question). The app then uses an algorithm to match you with an appropriate buddy, and will send you a new MSer to chat with every day at noon. Dealing with MS can sometimes be a lonely experience and communicating with others who "get it" can be a tremendous relief, so download MS Buddy and give it a try…

Once again, a big thanks to Healthline.com for choosing Wheelchair Kamikaze one of this year’s best MS blogs, and an even bigger thank you to everybody who reads these pages…

Sunday, June 5, 2016

Remembering Bobby Kennedy

Attorney General Kennedy and Rev. Dr. Martin L...

Image via Wikipedia

(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted five years ago, in 2011. Given the current ruinously cantankerous political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this post is as relevant today as it was 48 years ago, and should be taken to heart by those of all stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website – click here)

I am a man with few heroes.

It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 48 years ago today.

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable gossip hungry media. Back then, there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been achieved. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against social injustice and for the weak and disenfranchised.

Robert Kennedy started his political career working in the office of the now justifiably defamed Senator Joseph McCarthy, who at the time was in the midst of his vile early 1950s anti-Communist witchhunt, a hideous debacle which resulted in the destruction of the reputations and lives of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis.

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968.

Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of America one can only imagine that the arc of history might very well have been much more benign than the reality that ultimately came to pass. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss.

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and likely unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination.

Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…



Rest in peace, Bobby Kennedy.

Enhanced by Zemanta

Monday, May 30, 2016

The Medical Industrial Complex: Sick People Required – Repost, with Updates

(As some may have noticed, it's been a while since my last blog post. This is in part due to some of my recent struggles with progressive MS and its attendant and ever-increasing obstacles, but also too because I think I'm suffering from a little bit of "blogger fatigue". I've been writing this blog since February 2009, or almost 7 1/2 years, an endeavor that has truly been a labor of love that has rewarded me in ways I never could've imagined when I first came up with the name "Wheelchair Kamikaze". Still, of late I have been finding my motivation levels a bit depleted, so rather than shortchange readers by putting out essays produced more out of obligation than dedication, perhaps it's best that I take a little break. I'm certainly not talking months, probably only a few weeks, but I think just a short vacation from being The Wheelchair Kamikaze will do Marc some good. I hope you understand.

In the meantime, here's an essay I first wrote back in April, 2010, with some recent updates. Though now over six years old, the topic it covers may be more pertinent today than it was when I first wrote it, as the corrosive and corruptive influence of big money on big medicine is more insidious now than ever. As I've stated many times on these pages, I firmly believe that capitalism is the greatest creator of wealth in the history of mankind; however, I also believe equally firmly that the marriage of capitalism and medicine is an unholy one.)


Living life with a chronic illness such as Multiple Sclerosis gives one an inside view of the medical establishment, a view that healthy people rarely glimpse. In the blissful ignorance of good health, modern medicine appears to be bright and shiny, a miracle machine complete with magical elixirs, futuristic technology, and a sophisticated understanding of the maladies that strike human beings. Headlines and television news anchors shout about the latest medical breakthroughs, and a stream of television commercials assure us that there are pharmaceutical remedies for everything from cancer to osteoporosis to erectile dysfunction. Once sick and thrust into the belly of the beast, though, this illusion starts to fall away, and a different reality emerges.

Although there have been some incredible advances made in our efforts to heal sick humans over the last 50 years, there are still vast swathes of patient populations whose illnesses remain poorly understood, insufficiently and ineffectively treated, and ultimately incurable. Problematically, many of these patient populations generate billions and billions of dollars for the modern medical hierarchy, a situation that sets up a paradox within our profit driven medical establishment. Cure these patients, and vast sums of money and an elaborate infrastructure would simply evaporate; keep them perpetually reliant on hyper expensive medicines and medical procedures, and reap the fruits of an unending money machine.

Before I am accused of being a conspiracy nut, let me state outright that I do not believe that there is a cabal of evil, mustache twisting, demonic connivers assembled around a huge flaming conference table, snacking on deep-fried baby’s arms while plotting to keep cures and remedies hidden and out of reach from the desperately ill. If this were the case, the solution would be fairly straightforward; simply "out" the conspirators, and the walls would come tumbling down. Rather, the problem has become incorporated into the system itself, insidious and inherent, the logical outcome of the evolution of a medical industrial establishment that has come to view sick people as consumers and horrendous illnesses as opportunities for tremendous financial gain. This system does not require people with malicious intent to keep it functioning; it only needs decent people doing their appointed jobs to the best of their abilities to keep the gears turning.

As previously stated, the past 40 or 50 years have seen some incredible medical advances, most of them in the fields of surgery and in the treatment of traumatic injuries and infectious illnesses. Organ transplants, less invasive surgical techniques, and an ever increasing understanding of human physiology have combined to put a shine on many facets of modern medicine. A patient's chances of surviving a heart attack, or avoiding having one in the first place, are much better now than in 1950. Knee injuries that in decades past would have necessitated complex and sometimes crippling surgery can now be done using arthroscopic techniques requiring only tiny incisions, with recovery times measured in a few short weeks rather than many grueling months.

The treatment of some of our most dreadful illnesses, though, have not seen such advances. Ask the average person about the chances of surviving cancer today vs. 1950, and I would expect that most would tell you that your odds of beating the disease are much better now than they were 60 years ago, a belief driven largely by the almost relentless marketing done on behalf of the medical profession. The New York Times, though, reports that "the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005." (Click here for article). Headlines blaring about the latest advance in cancer drugs rarely mention that the studies cited often declare a cancer drug "effective" even if it increases the lifespan of the patients taking it by only a handful of weeks. The fight against some forms of cancer has indeed benefited from modern medical advances, but for many cancers, little real headway has been made. (Update 5/30/2016: I'm happy to report that since I first wrote this essay, there have been some advances in the fight against certain cancers. Cutting edge biotech firms seem close to making some major breakthroughs in using the body's own immune cells to fight some very intractable cancers, and though most of these possible treatments are still in early to mid stage research, some do show tremendous promise. Fingers crossed, these efforts will at some point in the not-too-distant future lead to some dramatic advances in the fight against cancer. Having said that, we've still a long, long way to go in conquering these horrendous diseases.)

Since the vaccine for polio was found in the mid-1950s, very few if any diseases have actually been eradicated. Instead, the trend is towards turning diseases such as diabetes, AIDS, some cancers, and multiple sclerosis into treatable chronic illnesses, their patients heavily reliant on fantastically expensive medications and interventions. The reason for this lies largely in the fact that over 70% of our medical research is carried out by pharmaceutical companies, whose primary mandate is to generate financial profit. (Update 5/30/2016: within the last few years the chronic disease Hepatitis C has, in fact, largely been cured. Of course, the drugs that cure this disease is hideously expensive, and are among those that have led to the recent political uproar over drug pricing, which in my opinion is long overdue. Yes, the research and development of groundbreaking drugs is extremely expensive, and for each successful new drug there are multiple failures. But there is no reason that pharmaceutical companies be pressured to recoup their investments in just a few years, as is currently demanded by a rapacious Wall Street culture that demands year after year bottom line growth, no matter how immensely profitable a company may be.)

The job of a publicly traded pharmaceutical company CEO is to constantly drive up the price of his company's stock, not to facilitate the creation of drugs that would be of the most benefit to the patients taking them. This isn't a question of morality, but of economics. The drug companies, and those who manage them, are merely doing what every other business endeavors to do in our free-market capitalist system, to constantly increase profit. I'm all for free-market capitalism; in recorded history there has been no better economic driver and creator of wealth. Unfortunately, when applied to healthcare, in many cases good economics has led to very bad medicine. The corroding influence of big money, in addition to an environment of lax regulation, has led to some shocking abuses of the system, such as the marketing of drugs that are known to be dangerous (click here for info), and the suppression of studies whose results are unfavorable to the drug being tested (click here for info).

Over the past three decades, pharmaceutical companies have discovered that the best way to increase profit is to market "blockbuster" drugs that patients must stay on for the rest of their lives. In the case of multiple sclerosis, this has led almost all research to concentrate on compounds that alter or suppress the human immune system, based on the "autoimmune model" of the disease, which states that MS is the result of an immune system gone awry. In reality, it's becoming more and more clear that the aberrant immune response seen in MS patients is more a symptom than a cause of the disease. (Update 5/30/2016: Despite a growing body of evidence that points to this fact, until very recently almost all MS research has focused on new and more effective ways of suppressing parts of the immune system. Now that the drug market for relapsing remitting MS is – in the words of industry executives – saturated, researchers have begun to focus on progressive MS, whose disease process does not respond to most immunosuppressive agents. Therefore, the research community is finally beginning to rigorously investigate other potential mechanisms of disease progression, which may ultimately lead to more effective treatments for all flavors of Multiple Sclerosis)

Since the mission of pharmaceutical companies is to generate the most bang for their research bucks, they direct their research dollars to projects that have the best possibility of leading to substantial profit. This, in turn, influences the behavior of even the most well-meaning medical researchers, who, just like everybody else, need to feed their families and pay their bills, and who naturally seek to advance their careers. Thus, they are drawn to investigations that will most likely win hotly contested research dollars. That funding, the vast majority of which comes from the big pharmaceutical companies, goes almost exclusively into researching novel compounds that can be patented and remain the sole property of the company that discovers them for many profitable years.

This same dynamic inherently underfunds research seeking to eradicate diseases that have each, in effect, become multibillion dollar a year industries. This is not because of evil or malicious intent, but instead is the result of the economic engine that drives what can be called the "medical industrial complex", the misguided marriage between profit-seeking corporations and the healthcare industry, which requires a perpetual supply of sick people to keep the money flowing. This need for patients is so intense that it can sometimes lead previously untreated and relatively benign conditions to be deemed diseases that require pharmaceutical intervention, as in the case of osteopenia (click here for details).

This same drive also leaves many potentially effective but unprofitable remedies untested and relatively ignored. Drugs such as Low Dose Naltrexone (LDN) and the effects of diet and natural remedies have barely been studied for their impact on MS, simply because there is no profit to be made from them. Recently, a cheap blood pressure medication, Lisinopril, has been shown to have some promise as an MS drug. This discovery wasn't made by any run-of-the-mill research scientist, but by Dr. Jim Steinman, one of the inventors of Tysabri, a very expensive and controversial MS medication that is very effective but also carries with it the possibilities of very serious side effects. Dr. Steinman would like to see a full scale human study of the effects of Lisinopril, but says that "Lisinopril is as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study" (click here for article). Thus, the drug remains unstudied in its effectiveness against MS, for now and probably forever.

It's hard to see a solution to this disheartening status quo, other than a significant increase in the government funding of medical research. If the $2.5 billion cost of a single nuclear submarine – the US currently has about 75 commissioned subs – were redirected towards foundational medical research, untold thousands might eventually be cured of currently untreatable or undertreated dread diseases. Unfortunately, the trends are heading in the opposite direction, with more and more funding coming from the private sector as public dollars become scarcer and scarcer in this age of soaring deficits and cries for smaller government. Though private research certainly has tremendous value, keep in mind always that the profit motive dictates against a search for cures. Undoubtedly, the outcry over the price of the recently approved Hepatitis C drugs – which prompted the pharmaceutical company that developed and manufactures it (Gilead Pharmaceuticals) to cut prices, sending stock prices plummeting – will give pharmaceutical companies pause when contemplating similar research goals for other diseases.

As a patient suffering from MS, the situation is incredibly frustrating, as it's clear to me that much of the research now being done on the disease is not conducted with patient benefit as its primary underlying goal, but rather with the profit potential and market share that each patient represents as the target. The medical industrial complex is a self-perpetuating entity that will not easily be shut down, the sheer force of its financial weight creating an almost irresistible momentum.

I'll let my final words on the subject be these: As a just and honorable society, please, view me first as a patient, not as a consumer. Human suffering should never be treated as a commodity, regardless of the considerable economic incentives to do so.