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Seeing Red

Posted Feb 08 2011 1:43am
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I'm generally a guy who is very slow to anger. I'm relatively even-tempered, and always try to remind myself that triumph and disaster, as Rudyard Kipling said, are both impostors. The heights of triumph and the valleys of disaster are usually short-lived, and to allow either to trick you into believing that yours is a life that will always be lived in splendor or despair is to have a deluded grasp on reality. I once won over $14,000 in the Florida lottery, and I've seen many of my chosen horses fall short by a nose, both literally and metaphorically. It isn't that I haven't allowed myself to experience the sweetness of conquest, or the bitterness of downfall, but I've long tried to keep things in perspective.

Though I was wildly emotional in my youth, with age has come at least a smidgen of wisdom, and I've learned that a dash of Zen detachment can go quite a long way towards keeping yourself sane and your life on a relatively steady course. Being diagnosed with MS has certainly put my studied grasp on my own emotions to the test, but practiced discipline has helped me to make the many mindbending decisions that are thrust upon patients with chronically debilitating diseases.

Still, there is much about having MS that just plain pisses me off. And not just the fact that I have the disease, which all by itself is a real kick in the ass. But there is a veritable potpourri of reasons to be angry that come parceled with the disease, some of which become apparent only after the blinding smoke from the explosive burst of the initial diagnosis clears, and you get down to the business of day-to-day life with your new and unwanted companion.

Let me start with a favorite target of most MS patients, and one that often seems to go out of its way to earn the bile of those it's supposed to be helping: the medical research establishment in general, and more specifically, the entities that fuel and profit from this woefully dysfunctional beast, the big pharmaceutical companies. To cut directly to the chase, why the hell is so much time and money being spent developing drugs and compounds that do nothing to address the still mysterious cause of MS, but in reality only treat what is essentially a symptom of the disease, a broken immune system. Can we throw a few dollars at finding the cause of this freaking monster? The hideously expensive solutions presented to MS patients don't even have the decency to try to pretend that they're fixing the abnormal immune response that is most likely not the primary culprit behind our creeping paralysis. No, the "Disease Modifying Drugs" modulate naughty immune cells, or suppress them, like a perturbed parent swatting a misbehaving child on the backside and then sending them to stand in the corner.

For the privilege of taking these drugs, the best of which only work in about 65% of those using them, MS patients must overlook the long list of side effects that go with them, starting at the benign end with flulike symptoms, and ending more ominously with the possibility of terrifying brain infections and deadly cancers. Yes, these drugs can improve the quality of life of the percentage of patients they do happen to work on, but that's about as good as it gets. They do absolutely nothing, squat, zippo, to actually cure anything. Instead, they turn the patients into pharmaceutical company clients for life, even if those lives may be shortened by the above-mentioned side effects. What these drugs have been spectacularly successful at doing is enriching the pharmaceutical companies that make them, to the tune of billions of dollars a year. Why cure, when you can treat, and mint money at the same time?

When it comes to medical research, our society has its collective head up its ass. We have extensively trained and credentialed brilliant minds working on cures for baldness and erectile dysfunction while cancer patients are dying, MS patients are becoming crippled, Parkinson's patients are losing control of their bodies, diabetics are going blind and losing limbs, and Alzheimer's patients are watching the very essence of who they are slip away. Granted, being chrome domed and limp schlonged may indeed be upsetting, but sorry, Buster, get to the back of the line. Oh, but wait, I keep forgetting that making money is the goal here, and aging men will go deep into hock for a head full of wavy hair and a phallus that will spring to life at the drop of a pill. Let us not forget, there's also the little fact that most of the occupants of the executive offices of the companies funding our medical research machine can count themselves among the chrome domed and limp schlonged. At least we with serious illnesses can rest assured, secure in the knowledge that they have their priorities straight. Making money? Check! Growing hair? Check! Stiffening schlongs? Check! Curing horrible illnesses? Well, that one will have to wait ...

I'm also getting increasingly pissed off at MS neurologists these days. I remain convinced that almost all of them genuinely have the best interests of their patients at heart. They're almost unique in the world of medicine as doctors who have never once cured any of their patients. I've been lucky enough to have met and been treated (unsuccessfully) by some of the best in the business, many of whom are quite literally obsessed with finding some way, any way, to find relief for their patients, but nevertheless they somehow can't stop themselves from denigrating the new kid on the block, CCSVI, and actively stand in the way of research that could confirm or disprove this new vascular theory of MS.

Fine, neurologists have reasons to seriously doubt the validity of the hypothesis, some of which even make sense. There certainly are aspects of the CCSVI hypothesis that contradict known MS Pathology. All the more reason, I should think, for the neurologic community to get fully behind CCSVI research. It seems to me that the quickest way to disprove a theory that they're so sure is completely wrong would be to eagerly team up with vascular physicians to design and put into motion quick and effective trials of CCSVI, thereby settling the question once and for all. By obstinately objecting to such trials, neurologists are not only forcing their desperate patients to seek treatment behind their backs, but they're actually perpetuating the life of a treatment modality that they say has no possible chance of having anything to do with Multiple Sclerosis. No chance? Really? Then prove it.

There are scads of willing MS patients and waiting Interventional Radiologists ready to start large-scale treatment trials that would put all questions to bed. If the trials prove that CCSVI is a crock, the neurologists can pat themselves on the back and do a touchdown dance. If, though, trials prove that CCSVI at least plays some part in the MS disease process and treating it can help patients, then they could also do their touchdown dance, because they'd finally have a radical new way to relieve the suffering of those they treat. Believe me, even should CCSVI prove to be THE cause of MS, there will be plenty of us with nervous systems damaged beyond the ability of CCSVI to help to keep neurologists in business for a long, long time.
I've talked to many of the pioneering CCSVI doctors, and almost every one tells me that they've reached out to the neurologic community to find willing partners, only to be rebuffed at every turn. Hey, neurologists, it's time to put on your big boy pants and step up to the plate. Your patients are demanding it.

As my disease has progressed, and I have become increasingly disabled, I've been handed yet more reasons to be angry. Unlike many other wheelchair users, I haven't encountered too many people who have been discourteous or rude, but here the streets are plagued with zombiefied pedestrians completely consumed with their smart phones and PDAs, to the point where they actually walk right into me and my wheelchair.
Now, this is New York City, and most pedestrians aren't going for arduous, time-consuming, miles long hikes. If they're traveling any significant distance at all, they're very likely either getting into a cab, bus, or subway. Those walking the streets are usually going for quick jaunts of no more than 20 minutes, during which time it seems that it's impossible for them to not stay constantly connected to somebody someplace. What on earth could be so important that they can't actually watch where they're going, join the rest of the world for a few minutes, and wait until they've reached their destinations to reconnect? Instead they are compelled to keep talking and texting while blindly placing one foot in front of the other, oblivious to everything around them. I wonder, do they text, "I JUST WALKED INTO A GUY IN A WHEELCHAIR?" If this doesn't stop soon, some of them are going to need to dial 911 and text, "OMG! SOME LUNATIC IN A WHEELCHAIR JUST SHATTERED BOTH OF MY SHIN BONES."

I'm also peeved at all the shops and restaurants in the city that would be wheelchair accessible if not for the single 1 foot step they have in front of their entryways. Can they not replace these little steps with little ramps, so that I could spend some time and money in their establishments? It wouldn't cost much, and my money is just as green as that of the guy with fully functional legs who just walked into me.

So, what to do with all this anger, bitterness, and resentment that can arise not only from Multiple Sclerosis itself but from the frustrations that go along with it? Well, you can let your anger just sit and fester, like the flesh of a pedestrian stuck to the chassis of my wheelchair, or you can turn it into the energy that it takes to fight this damned disease each and every day. Way back when I was a teenager, The Clash sang, "Let fury have the hour, Anger can be power, You know that you can use it." And use it you can, to educate yourself and become your own best advocate, to power the resolve that this disease will not define you, and to not ever give way to despair. Anger is an energy, and turned inward anger can only do damage to those feeling it, but channeled outward and targeted correctly, anger can be the motivation to annoy the bejeezus out of some people who could really use some annoying…

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