Video Portrait of an Artist Grappling with PPMS

One of the MS blogs I've been most impressed with is "Healing through Multiple Sclerosis", published by artist Cathy Aten. Cathy's blog documents both the mounting physical challenges and very personal internal struggles that she must wrestle with as a result of her Primary Progressive Multiple Sclerosis.

On a daily basis, Cathy eloquently communicates the difficult to verbalize impact that the disease has on the psyche of those who suffer from it. She writes of the horror and wonder of watching oneself change, and the constant coming to terms with losing control of one's life and oneself on so many levels, all the while teasing out the quiet lessons that might be learned from the experience.

Cathy recently posted a video in which she discusses her experiences in dealing with her progressively disabling illness. Both intimate and intelligent, this brief video is an impactful summation of the psychological labyrinth that this very physical disease demands its sufferers go through, forcing its victims to find a way to navigate through a fearful and ever-changing landscape, all the while trying to hold onto that which defines them.

As Cathy so succinctly puts it, "What all can you take away and still have the essence of a thing?"...

A Christmas Miracle

Well, it's now officially Christmas Eve, so I thought I'd post a little Wheelchair Kamikaze Christmas message. I decided to refrain from ranting and raving about hairy monkey balls sucking Multiple Sclerosis, evil insurance companies, festering brain lesions, the pleasures of lumbar punctures, brilliant neurologists, Eastern philosophy, the promise of CCSVI, absurd research findings, crazy wheelchair shenanigans, the injustices of disability, moneygrubbing pharmaceutical companies, the threat of the medical industrial complex, the insensitivities of society to those of us who are disabled, or any of my other usual fodder.

Instead, I thought I'd simply wish you all a very Merry Christmas.

Now, there's a Christmas miracle...

And here's my favorite Christmas song, by The Royal Guardsmen...

Moments of Clarity

Image by innoxiuss via Flickr

Receiving a diagnosis of MS, or any serious illness, is a reality shattering event. There you are, going about the business of day-to-day life often as if on autopilot, when a huge hairy beast steps into your path, grabs you by the ankles, and drags you kicking and screaming into some strange new dimension. Suddenly, the world is a different place, everything that you took for granted now imperiled, your expectations for the future warped beyond recognition. What once may have seemed quite orderly has now fallen victim to chaos, and however composed one might appear on the outside, on the inside pandemonium has gained a foothold.

Even after many years of dealing with chronic illness, the chasm between what was expected and what has been received can be tremendously disorienting. When dealing with a progressively disabling illness like MS, reality is a moving target. It seems that just when you acclimate to your current condition, some new symptom or event crops up to tear apart even that impermanent reality. The human mind craves at least a minimal amount of order, but in the life of a chronically ill patient, disorder often has the day.

Lately I've been awash in a surplus of muddle and inner tension. The relentless progression of my MS, my dissatisfaction with the results of my cataract surgeries (which I'd had such high hopes for), and a bunch of other nagging health issues have combined to turn the universe into an unfriendly swirl of doubt and confusion. The coming of another holiday season, which starkly marks just how far my disease has progressed compared to holidays past, has also taken its toll. What is this treacherous path that I've been forced to follow? Is there some purpose that can be divined from it? And can this path possibly lead to a destination less ugly than the one I anticipate?

As threatening skies have gathered, I've managed to find some solace by taking shelter in a moment I experienced many years ago, a fleeting instant of understanding, a flash of insight that was gone before I could grasp it, the momentary comprehension that there are indeed patterns and reason and logic that lie just beyond the abilities of our puny, inadequate brains to realize.

I think I've experienced such a moment only once.

In late November, 1993, I was driving back from Key West to Miami, after spending a deliciously debauched but life-affirming weekend at the southernmost town in the United States, in the company of my extremely difficult but very attractive girlfriend. Back then Key West still had the vestigial feel of the Bohemian frontier town it once was, a feel which I understand is tragically now gone. I drove in the approaching dusk of one of those perfect tropical winter afternoons, the sky an endless blue, the balmy air tender as a gentle peck on the cheek. The convertible top of my little red sports car was down, its engine singing its satisfying throaty growl, King Pleasure's "Moody's Mood for Love" pouring from the speakers which lay embedded in the car's head rests, cleverly placed there so the music could be heard above the noise of the open road.

The late afternoon sun infused everything with a glowing pink and gold, and the road we followed was on one of the smaller islands that make up the Florida Keys, just a little spit of land less than a half-mile across, the Gulf of Mexico a few hundred yards to my left and the Atlantic Ocean the same distance to my right. The air whipping around us tasted like the ocean, and with one hand on the steering wheel, and the other feeling the vibrations of the motor through the stick shift, all of my senses were full.

I started to say something to the girl, and glanced over at her sitting to my right. Though she wore big dark sunglasses, I knew in an instant she was dozing, her head cocked gently to one side, her long strawberry hair playing with the wind. In the amber warmth of the setting sun, the sight of her, set in such perfect repose, stirred some secret part of my soul.

I took a breath, and quite suddenly everything stopped. The music and the sound of car and the road around me fell silent, I didn't exhale, I couldn't exhale, the girl and her tousled hair and the car and the sky and the world around us frozen for a pregnant instant. In that momentary pause, I flashed upon the unexpected understanding that I might have a chance at figuring it all out, that there could be significance and purpose to the teeming chaos that makes up a life, that the path upon which I tread might actually have some meaning.

And then it was gone, everything set back in motion. King Pleasure sang another note, my heart registered a beat, the girl stirred, and the march of life continued once again, just beyond the reach of comprehension. I exhaled.

Well, the car was sold about a year later, and the girl and I didn't last half that long. I’ve heard that Key West has since succumbed to the inevitable rot of commercialism, and is no longer the wonderfully strange little place I so loved back then. But for one single transcendent moment, all of these elements came together in a way that still keeps me pondering, in a tableau forever imprinted in my minds eye. In times of sadness, or trouble, or remorse, or confusion, I often retreat to that moment, and somehow find comfort in the wisp of insight into the wholeness of being that it provided.

Zen Buddhists refer to these brief moments of understanding as kensho. They call a deeper, more lasting enlightenment satori. Whatever its name, I'm grateful to have experienced my moment, as its impact has served me as an anchor through troubled times. Whenever the burden seems too great, the road too twisted, when I start getting lost in abstractions like "fair" and "not fair", I can slip back into that moment, and though I can't re-create the experience, the simple knowledge of it and the sense that there are indeed unknowable patterns within all of the seeming randomness grants me at least a few measures of serenity.

I guess some would call it faith...

More CCSVI Info

The momentum behind the Chronic Cerebrospinal Venous Insufficiency (CCSVI) theory of MS really seems to be picking up steam. Though not yet covered extensively in the American press, in Europe and Canada print and television journalists have eagerly picked up on the topic.

I'll continue to post intelligent links to CCSVI info as I come across them, and as more studies get started, I'm hopeful that the theory will move into the realm of fact. As of now, I will remain optimistic but skeptical. I've seen many other MS "miracles" turn into faerie dust, but my gut tells me that there really is something to CCSVI.

Here's a link to a news piece on CCSVI from CBC radio, in Canada. It's an interview with Dr. Samuel Ludwin, a professor of neuropathology at Queen's University who's been researching Multiple Sclerosis for over 30 years. Though cautious, he does express enthusiasm for the radical new idea that MS may in fact have a heavy vascular component.

One of the problems I've had in fully embracing CCSVI is the fact that it doesn't account for the almost certain association of the Epstein-Barr virus (EBV) with MS. Numerous studies have shown that people who are not infected with EBV do not get MS. Here's a letter to the editor of the Journal of Neurology, Neurosurgery and Psychiatry that postulates a convincing link between EBV and CCSVI.

We may be witnessing a shifting in the paradigm of the understanding of Multiple Sclerosis...

New Canadian Broadcasting News Report on CCSVI

(Sorry I've been inactive for the last week or so. I've been unable to blog or respond to e-mails because my computer fried. Just got it back up and running today, and let me just say that the Dell telephone service technicians are complete nincompoops. I think they mean well, but gadzooks, trying to diagnose a dead computer by reading through a script all the way in India just isn't working, folks. After I dig out from under a big pile of e-mails, I'll get back to posting my usual mindless dreck.)

The Canadian Broadcasting Company aired a news piece tonight on CCSVI (the "vascular theory" of MS), which featured Dr. Zivadinov, the researcher who is running the imaging study at the University of Buffalo. This report is much more cautious than the feature that ran two weeks ago, and appears aimed at tempering the expectations of MS patients.

Just to throw in my two cents, I believe that CCSVI will in fact prove to play a part in the Multiple Sclerosis puzzle, but how big a part has yet to be determined. It may turn out to be the Holy Grail, or researchers might find that narrowed veins are the result of Multiple Sclerosis, and not the cause. The reality probably falls somewhere in between these two extremes.

Even if CCSVI does prove to play a major role in the MS disease process, it also must be determined exactly how best to treat it. As it stands now, the surgical treatments involve either balloon angioplasty, or placing stents in the narrowed sections of the jugular and/or azygos veins. Unfortunately, balloon angioplasty (referred to as the "Liberation Procedure") often has to be repeated, as 50% of the jugular veins treated eventually re-collapse. The stenting procedure has proven to have some major problems also, as the stenting of jugular veins is largely unexplored territory. One of the patients who was treated at Stanford University had a stent migrate down into his heart, necessitating emergency open-heart surgery to save his life.

It may turn out that customized procedures need to be developed to treat CCSVI, and multiple techniques will probably be necessary in order to address stenosis found in various places of the CNS venous system. In particular, stenosis very high up in the jugulars may prove to be quite problematic, resistant to both balloon angioplasty and stenting. Naturally, the stenosis that has been found in my jugular is extremely high up.

Yippie.

'Tis the Season

Image by Amarand Agasi via Flickr

Alas, it's that time of year again, when folks of all races, creeds, and colors turn their attentions to friends, family, and the brotherhood of all mankind. A time when all thoughts of the self are shunted aside and give way to the beneficence of faith, hope, and charity. Filled with the spirit of the season, a heartfelt kinship for one and all is celebrated throughout the land...

Okay, let's cut the crap. The holidays are upon us and it's time to party like Tiger Woods, hopefully without getting hit upside the head with a nine iron. In between imbibing too much eggnog (I'm not quite sure what nog is, but it sure helps put the "spirit" in the holidays), giving yourself carpal tunnel from spending countless hours on Amazon.com, and fake smiling your way through holiday office parties, this is a great time of year to give the gift of giving, by donating generously to the charity of your choice. And while I genuinely feel nothing but warm fuzzies for helping the homeless, abused children, or neglected animals, worthy causes all, there is one particular crusade that is near and dear to my heart, and, I suspect, yours, since you are reading this blog.

I speak, of course, about the fight against Multiple Sclerosis. I truly feel that we are on the cusp of some incredible breakthroughs in this battle, from the tremendous promise of stem cell research, to the unraveling of the genetic mysteries presented by the disease, to the recent excitement that has spread like wildfire about the possibility of MS being a vascular disease (the CCSVI theory). On many fronts, the war against MS is finally yielding the kind of results that can be translated from the intellectual exercises of the laboratory into the hard-core realities of patient care. Although the ultimate answers may still lie just beyond our reach, momentum is building, and it's not entirely delusional to have real hope that some momentous breakthroughs may be just over the horizon.

When thinking about making donations to the fight against MS, the one organization that universally comes to mind is the National Multiple Sclerosis Society. To the population at large, the NMSS has become THE face of the struggle against MS . Because of the huge amount of publicity generated by NMSS sponsored events such as MS walks and bike rides, many other worthy organizations fighting the good fight against MS get lost in the Society's shadow.

Please don't get me wrong, the NMSS provides many valuable services and resources to the MS community, but there are smaller organizations slavishly devoted to the complex fight against MS that also deserve attention (and donation dollars). Besides, the Wheelchair Kamikaze has a visceral distaste for conformity, and a natural affinity for the little guy, so why donate your hard-earned cash to the same monolith that everybody else donates their money? It just so happens that I know of a few smaller MS groups devoted exclusively to MS research, whose work I believe to be vital to the fight against Multiple Sclerosis.

Three of my favorite lesser-known MS nonprofit organizations are The Accelerated Cure Project, The Myelin Repair Foundation, and The Multiple Sclerosis Research Center of New York. These terrific, energetic organizations take a very hands-on approach to tackling the the puzzles of Multiple Sclerosis, and work tirelessly on the behalf of those who've heard the dreaded words, "You have Multiple Sclerosis". Here's a little bit about each of them:

• The Accelerated Cure Project- Founded by an MS patient, this nonprofit is dedicated to curing MS by determining its causes and mechanisms. They have established an "MS Repository" of blood samples and data that has been made available to all scientists and companies that have promising ideas that might potentially benefit people with MS. Lack of access to high-quality samples and data from MS patients has been a major obstacle that has long plagued MS researchers. For scientists investigating MS, the MS Repository, which so far includes blood samples from over 1000 MS patients, is a gold mine of hard to get materials that can be used for analysis and experimentation. The compiling and organizing of the repository requires a tremendous amount of time and effort, and the funding for the endeavor comes primarily from individuals and families directly affected by MS. MS patients can also choose to participate in the repository itself by donating blood at one of the ACP's participating MS clinics (more information is available on The Accelerated Cure Project website). And, yes, the repository does include samples of the Wheelchair Kamikaze's blood, which for some reason is kept in a lead lined container and is under 24-hour guard by a detachment of specially trained Sasquatches.
• The Myelin Repair Foundation-The MRF, also founded by an MS patient, was created to break down the barriers in medical research and commercial drug development that work against the rapid delivery of patient treatments. All too often, researchers work in a kind of vacuum, and often consider each other rivals rather than partners in the battle against MS. The model under which research is currently carried out often presents hurdles to true collaboration among researchers in different laboratories and research groups. The MRF has developed the Accelerated Research Collaboration model, a radical new approach to medical research whose primary goal is the rapid translation of laboratory discoveries into real-world patient treatments. As its name would suggest, The Myelin Repair Foundation has made identifying myelin repair drug targets that will lead to treatments for MS its sole focus. The MRF is heavily involved in investigating the potential of stem cell research, as well as other therapies designed to physically repair the damaged nervous systems of MS patients. The Accelerated Research Collaboration model has proven so revolutionary that many believe it has the potential to change the way of all medical research is conducted. Gifts to the MRF will be matched by a challenge grant from another generous donor, effectively doubling the size of any donation.
• The Multiple Sclerosis Research Center of New York-The MSRCNY is an independent research laboratory that is headed by the Wheelchair Kamikaze's own neurologist, Dr. Saud Sadiq. Under Dr. Sadiq's direction, the center conducts groundbreaking research into identifying the cause of MS, understanding the mechanism and progression of the disease, examining new treatment strategies, and studying ways to repair and regenerate nervous system damage. Considered one of the finest independent MS research laboratories in the world, the MSRCNY is staffed by world-class researchers and doctors whose sole focus is defeating Multiple Sclerosis and increasing the effectiveness of MS patient care. Dr. Sadiq and his staff also deserve enormous admiration for putting up with the constant pestering of some wise ass crackpot who likes to drive his wheelchair much too fast. Thanks to the generosity of an anonymous donor, tax deductible contributions to MSRCNY will be matched dollar for dollar, doubling the value of any donation.

All of these organizations do incredibly valuable work, and are truly worthy of any donations that you, your family, or your friends would be kind enough to make. If you have MS, donating to The Accelerated Cure Project, The Myelin Repair Foundation, or the Multiple Sclerosis Research Center of New York is truly a case of helping yourself by helping others. If you love someone with MS, there could be no finer expression of your affection than a donation made on their behalf to any or all of these groups.

Of course, there are other extremely worthy organizations doing terrific things to help combat MS, and I don't mean to slight any of them by exclusion. The Accelerated Cure Project, The Myelin Repair Foundation, and the Multiple Sclerosis Research Center of New York, though, get the exclusive and much sought after Wheelchair Kamikaze stamp of approval...