Thursday, December 30, 2010

A Video Interview with My CCSVI Doctor

MRI image of a patient with CCSVI. Diagnosis: ...

Image via Wikipedia

Sorry for the delay since my last post, but I've been a bit under the weather. Nothing serious, but as my fellow MSers know, just a touch of fever can really set MS symptoms afire. It's that whole heat sensitivity thing…

I'll be working on a new post in the next several days, but rather than leave everyone hanging, I thought I'd post this interview with the Interventional Radiologist who did my attempted CCSVI treatment, Dr. Salvatore Sclafani.

A quick recap for those who've discovered Wheelchair Kamikaze since my try at liberation: I underwent a catheter venogram procedure last March, which revealed that I do have a blockage in my right internal jugular vein, but, as with everything else about my disease, it's pretty strange. Unlike most other patients found to have the venous blockages associated with CCSVI, whose abnormalities occur inside of their veins, in the form of stenosis, valve malformation, or anomalous membranes, my blockage is caused by a muscle bundle outside of the vein pressing in on it, forcing it significantly closed. This blockage can't be addressed in the usual ways, with balloon venoplasty or with a stent, so further options are being explored.

I currently have tentative plans to undergo a second procedure with Dr. Sclafani sometime early in the New Year, to recheck my entire CNS venous system, as well as take another look at the blockage in my right internal jugular. Dr. Sclafani has learned much since I underwent my procedure nine months ago, as knowledge of CCSVI and how to treat it is evolving exponentially, almost by the day. This is why I've recommended in previous posts that those with milder symptom profiles and less aggressive disease should probably hold tight and wait 6 to 12 months before pursuing CCSVI treatment, since the procedures being done now are much more sophisticated than those done just a few months ago, and those done several months from now will be all the more refined. We'll also be discovering much more about the prevalence and impact of CCSVI in the coming months, as several trials start reporting initial results.

Unfortunately, my disease continues to progress rapidly, and I believe left unimpeded it will have me bedridden within the next 12 months, so I simply don't have the time to wait. Any port in a storm, as they say…

And so, without further ado, here's Dr. Sclafani, with a comprehensive assessment of the current state of CCSVI research and treatment, including an explanation of what CCSVI is, the methods used to treat it, the uncertainties surrounding the hypothesis, reasons for optimism, and the need for healthy skepticism and realistic expectations. BTW, I did not shoot this video…

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Sunday, December 19, 2010

Ho Ho Ho-Now Give Me Your Money

A&P, COFFEE, SANTA CLAUSImage by George Eastman House via Flickr

No, I don't want your stinkin' money, but if you are looking for places to do some charitable giving this holiday season (and before January 1, so you can write it off on this year's taxes), I thought I'd provide a list of some of the more esoteric MS related nonprofits that could certainly use whatever funds you might be able to spare. I know that times are tight, and many of us can barely afford to keep ourselves afloat, so please know that I'm not trying to guilt trip anybody. But If you do suddenly find yourself sprouting a full set of white whiskers, an expanding girth, a red velvet jumpsuit, and an unquenchable urge to give, here are a few places worthy of your dough re mi…

· CCSVI Alliance (click here)-this is a new organization devoted to helping further research and learning about CCSVI and its treatment. Although only a few months old, the CCSVI Alliance is already starting to see its presence felt, and is sponsoring events such as a CCSVI Walk-n-Roll in Tampa Florida (click here), and a learning symposium at Brandeis University in Waltham, Massachusetts (click here). Future plans include sponsoring panels to encourage dialogue between neurologists, interventional radiologists, and patients, and the funding of CCSVI treatment research. (Full disclosure-I am a member of the CCSVI Alliance's Patient Review Board, but please don't punish them for their dubious choice of friends).

· Buffalo Neuroimaging Analysis Center (click here)-often referred to as BNAC, the center is currently conducting numerous CCSVI trials, including ongoing imaging studies and one of the few CCSVI treatment studies currently underway. BNAC is home to a dedicated group of CCSVI researchers, led by Dr. Robert Zivadinov, a world-class research neurologist. BNAC has until January 1 to reach a fundraising goal of $150,000, which will be matched dollar for dollar by a grant from the Direct-MS Foundation. BNAC offers some innovative fundraising options, including the hosting of MStery parties (click here), which have been held around the country. I had the pleasure of personally attending one of these parties here in New York City, and virtually attending one held at The Pink Door restaurant in Seattle, Washington, during which I had the honor of introducing Dr. Zivadinov, live via Skype. Oh, the wonders of modern technology…

· The Myelin Repair Foundation (click here)- The MRF is the world’s largest non-profit research organization exclusively focused on developing the next generation of MS treatments—myelin repair. By aggressively dismantling the walls that exist between researchers and labs that often compete rather than collaborate, the MRF is in effect building an entirely new research model, which is a necessity of the utmost urgency, as our current research model is horribly flawed (click here for Newsweek article on this topic). The founder of the MRF, Scott Johnson, is himself an MSer, and his tireless efforts, and that of his organization, have already led to some innovative scientific breakthroughs that hold the promise of fulfilling the Holy Grail of MS research, the repair of nervous system damage done by the MS disease process. In just five years, the efforts of the MRF have led to 19 new potential myelin repair drug targets, 24 new research tools for neurological disease research, 18 patentable inventions, more than 50 articles published in peer-reviewed journals.

· The Accelerated Cure Project (click here)-The Accelerated Cure Project for Multiple Sclerosisis a national nonprofit organization dedicated to curing MS by determining its causes. The organization's main effort is the creation of a large-scale, multidisciplinary MS Repository of blood samples and data from people with MS and matched controls. The ACP makes these samples available to researchers investigating the causes of MS and other demyelinating diseases. In exchange for access to the repository, researchers agree to return the data they generate from the samples so that results from disparate experiments can be combined. So, the ACP not only wants your money, they quite literally want your blood, too. The Accelerated Cure Project holds in its repository over 40 tubes of the Wheelchair Kamikaze's blood, which, as I've noted in previous posts, are for some reason kept in a specially designed lead lined box, guarded by a detachment of highly trained Sasquatches.

· The Multiple Sclerosis Research Center of New York (click here)-The MSRCNY is headed up by my personal neurologist, Dr. Saud Sadiq (who I affectionately call Dr. Big Brain, because he's really smart). In addition to his clinical practice, Dr. Sadiq runs the MSRCNY, an independent, private not-for-profit research entity dedicated exclusively to research into the cause, treatment and remedy of MS. Areas which the Research Center is investigating include identifying the cause of MS, understanding the mechanism and progression of the disease, new treatment strategies for MS, and, most excitingly, neural cell repair and regeneration. This last area of research includes explorations into the use of adult stem cells to repair the damage done by MS. Just as an aside, I've heard that the MSRCNY has some marmosets, but they have so far refused to allow me to play with them. I suspect that if I keep arguing with Dr. Sadiq about CCSVI, though, he may try to turn me into a marmoset. If he promises to turn me into a marmoset that can walk, I may just go for the deal. I'm not sure how Karen would feel about being married to a marmoset, but she's pretty easy going…

So, there you have it, five lesser-known MS nonprofits that are very worthy of your charitable donations. To all of my readers, I wish you from the bottom of my heart a very Merry Christmas, a belated happy Hanukkah, a good Kwanzaa, and a joyful (and belated) Eid-al-Adha.

And to ring in the holiday, here's one of my favorite rock 'n roll Christmas songs, done by The Waitresses, a band the 18-year-old me saw perform at the now long gone Peppermint Lounge on W. 45th St. in Manhattan, on New Year's Eve, 1981, at about 5:30 AM.

Good times, those…

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Sunday, December 12, 2010

Bits and Pieces: The Return

Adults with chicks

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It's been a while since I've done a "Bits and Pieces" post, so I think it's high time for another one. Just to review, this series of posts are a collection of various news items and other bright and/or shiny objects that have caught my attention in the recent past. Most have something to do with MS, but I reserve the right to include whatever random objects show up on my radar screen.

Please note, I do not actually have a radar screen, although, now that I think about it, I would definitely like to have one. I'm not sure what I would actually do with my very own radar screen, but it seems like having one would be good for at least a few minutes of amusement every day. Kind of like a fish tank, which I also don't have, or a 50-year-old plaster statue of Louis Armstrong, which I do.

When I was single, back in the 90s, I had my very own pinball machine in my very own bachelor pad, and on many days my pinball machine was good for several hours of amusement. It was an old machine from the early 1970s, and it featured a picture of a woman who looked a lot like Angela Davis (click here). I also had my very own 3 1/2 foot tall inflatable Emperor Penguin named Emerson. It was quite the swinging bachelor pad, and was like a Venus Fly Trap for female aficionados of pinball and Emperor Penguins. In other words, I wound up playing a lot of pinball. By myself.

Anyway, on to Bits and Pieces:

  • This article from the Wall Street Journal (click here) talks about the roots of the soon to be available oral MS drug Gilenya. I'd been hearing for years that the drug was derived from an ancient Chinese herbal remedy, a fungus called Cordyceps that grows on the back of caterpillars. But, according to this article, while Gilenya does have its roots in ancient Chinese herbal medicine, it's actually derived from a fungus that grows on cicada bugs, eventually killing them and then using the bug carcass as nourishment while the fungus grows. In the flowery prose of the Wall Street Journal (now, there's a phrase that's not used very often), it's described this way: “By summertime, the insect is dead and its corpse has been transformed into a vessel for the blooming fungus." Poetic, isn't it? Turns out that this fungus has strong immunosuppressive properties and a refined version of it was first tried as an antirejection drug for transplant patients. When that didn't work, they turned the drug's crosshairs on MS patients, and found the compound to be quite effective at suppressing relapses and reducing enhancing lesions. It may even have neuroprotective properties, and is currently undergoing trials on PPMS patients, one of the few drugs ever trialed on that particularly hard to treat patient population. I have serious reservations about this drug, which I'll discuss in an upcoming post, but it is interesting that an ancient Chinese herbal remedy has indeed been found to have powerful medicinal properties. The Chinese have been using many of these remedies for over 5000 years, and common sense should tell us that they wouldn't still be in use if there wasn't something to them.
  • Here is a brilliant piece of scientific investigation entitled "Fatigue, Sleepiness, and Physical Activity in Patients with Multiple Sclerosis" (click here). This study somehow separates fatigue from sleepiness, measuring them independently, and then comes the startling conclusion that the amount of physical activity undertaken by an MS patient decreases as the severity of the disease increases. Gadzooks! Stop the presses! Meticulous scientific study has shown that the more crippled somebody gets, the less physically active they are. Guess I'd better cancel my plans to summit Mount Everest. And I was so looking forward to my scheduled meet and greet with the Yeti (click here). This brief abstract doesn't quite tell us the precise difference between fatigue and sleepiness, although apparently they can be measured on different scales. Personally, I don't think I've ever been fatigued without being sleepy, or sleepy without being fatigued. Maybe I'm just too tired to understand the difference between the two, or too sleepy, or too fatigued. Either way, trying to figure this out has made me exhausted, and I think I need a nap…
  • Speaking of naps, I discovered a cool little app for the iPhone or iPod Touch called Pzizz Energizer, courtesy Julie Stachowiak's weekly MS column on (click here). Pzizz is kind of a guided meditation thingie that mixes sound effects, gentle music, and a soothing voice to lull you into a highly relaxing nap of anywhere between 10 and 90 minutes (the length of the nap is user selectable). I'm usually pretty suspicious of such things, but I really respect Julie's writing and perspective on MS, and was confident she wouldn't recommend anything that was complete bullshit. So, I ponied up the dough and bought the app for my iPod Touch, and promptly gave it a whirl. Sure enough, the hypnotic sounds generated by the app put me into a very relaxed state, and when my 25 minutes were up, I did find myself a bit more energized. In all honesty, the effect wasn't much different from some guided meditation CDs that I have, but Pzizz promises that the program will be different every time you use it, so you won't pass out simply from the sheer boredom of listening to the same program over and over again. I can't tell whether it works better on sleepiness or fatigue. Perhaps I'll apply for a research grant to study this mystery, but that will have to wait until I get back from Mount Everest.
  • The total scumbags who conducted this study (click here) concluded that MS patients exhibit twice as much withheld anger than the general population. Fucktards! What the hell do they know, with their fancy PhD's and symposiums and crap. These pieces of animated horse shit further conclude that the suppressed anger in MS patients is "caused by nervous system damage, rather than an emotional reaction to the stress of the disease." As if. Did it ever occur to these mental Lilliputians that the suppressed anger of MS patients may have something to do with the fact that money is being spent on asinine studies like this one, rather than on finding a cure for this fucking disease? If these scientists were standing in front of me, I'd kick them squarely in the nuts. I'm assuming the researchers were men, because no woman would be stupid enough to conduct such a mind numbing bucket of moose piss. But wait! Rats! I can't actually kick anything, because I have goddamned MS. Those bastards! Holy crap, now I have even more repressed anger! Aaargh!
  • Okay, so much for repressed anger. Sorry about that, don't know what came over me. Must've been my nervous system damage causing repressed anger. Well, maybe not that repressed. Anyway, my friend Michelle, who was Montel's Facebook Friend of the Week a few weeks ago (click here) sent me this link (click here) which made me laugh harder than I've laughed in a long time. It helps if you're a dog lover, but even if you're not, this is just plain funny. For those of you with urinary urgency issues, you might want to read this in or near a bathroom, because I almost wet myself about halfway through the read.

Okay, that's it for this edition of Bits and Pieces. I think this post has run the full gamut of emotions, and now I've got to go check on getting my very own radar screen. EBay, here I come…

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Sunday, December 5, 2010

The Frustration Machine

Rubik's Cube

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I recently posted a piece titled "Surfing an Emotional Tsunami", in which I talked about the overwhelming torrent of emotion that comes bundled in the Multiple Sclerosis package (click here) . One astute reader commented that I had left out a very important feeling with which he often saw his MS stricken wife struggle: frustration. And, of course, he was absolutely right. The more I thought about it, the more it became clear to me that frustration plays such a large role in the experience of MS patients that it deserved a post of its own. MSers experience frustration on so many different levels that it's presence can almost be taken for granted, like the air that we breathe. Unlike life-giving oxygen, though, frustration can be suffocating, and in fact can be the seed of many of the other negative emotions that plague MS patients: fear, anger, guilt, desperation. Frustration strikes on many fronts, and MS patients battle it in its myriad forms over and over each and every day.

The disease itself frustrates all that it touches; patients, their loved ones, and the doctors who tend to them. The infrastructure that has grown up around the disease, a multibillion-dollar a year engine for which MS is the fuel, generates its own set of gargantuan aggravations. And the world itself, in which an increasingly disabled person can start to feel more and more alien, holds perhaps the most implacable frustrations of them all.

Let's start within the patient, and work our way outward. Upon diagnosis, patients are told that we have an incurable disease (frustration of the terrifying variety) that, despite over 150 years of research, medical science barely understands (mind-numbing frustration). Our immune systems for reasons unknown have gone on the fritz, we are informed, and have become cannibalistic, slowly devouring our own central nervous systems (petrifying frustration). The more questions we ask, the less clear the picture becomes, and as questions beget questions, the mind begs for answers that simply aren't there (intellectual frustration). We are trapped in a medical Rubik’s cube, and despite decades of endless turning and twisting, the goddamned colors refuse to line up.

As the disease progresses, its attendant frustrations, often suffered in silence, progress right along with it. The nagging disturbance of a numb or weakened limb slowly morphs into the outright horror of a once faithful leg or arm that has become totally dysfunctional, more a hindrance to be overcome than the helper that it used to be. The frustration I feel when I am forced to use my still functional left arm to physically place my now useless right arm into some out of the way position is indescribable. Despite my never-ending attempts at ferociously willing the damned thing to move, that arm becomes ever more and more unresponsive, as if it were part of a corpse grafted onto my body.

As physical dysfunction spreads, no amount of willfulness is able to impede its momentum. The frustration involved in watching oneself whither away is simply beyond words. When medical science first recognized MS as an identifiable disease, one of the earliest names given to the condition was "Creeping Paralysis", a discomforting label to be sure, but one that much more accurately describes its horrors than any of the medical jargon now used to conveniently camouflage the realities of Multiple Sclerosis. Million dollar words like spasticity and paresis do nothing but dress up in ludicrously antiseptic scientific jargon the fact that I can't move my fucking arm or leg. I'm not a case study in a scientific paper, I'm a human being with creeping paralysis. Frustration…

Each of the physical losses inflicted by the disease frustrates the execution of everyday tasks that in the past never even warranted a second thought. I very often find that my losses reveal themselves in the countless simple acts that it takes just trying to get dressed and out the door. Can the word "frustration" even begin to describe the emotion I feel when I discover that some of last year's difficult tasks have now become damn near impossible? When last December's barely winnable struggle to put on my right sock has now become an unworkable nightmare? When such inconsequential modern conveniences like the zipper on my favorite leather jacket have suddenly been transformed into infernal devices seemingly designed specifically to illustrate just how brutal a toll this disease has taken on my body? Certainly, there must be a mightier word, but for now frustration will have to suffice.

For those who love and care for us, watching the disease’s effects from the outside in is its own particular brand of torture. Though I don't have any children, I can only imagine the helpless anguish a parent must feel watching their child struggle with the disease, no matter the age of the parent or the child. The only personal experience I have that might begin to compare would be the gut wrenching desperation I felt as my beloved Labrador Retriever Stella (click here) succumbed to cancer. Though I know such a comparison might make a mockery of the parent-child bond, it's the closest I can come, and at least I could take some comfort in the fact that my canine friend had lived a relatively normal life span. But there can be no such comfort for a parent watching their adult child, the essence of their own flesh and blood, gradually become diminished. Can a young son or daughter's immature mind even process the sadness, anger, and frustration of having a dad who can no longer play catch, or a mom who needs to be mothered? And those spouses who decide to stick by our sides, dauntless spirits all, navigating the treacherous path laid out by MS, not out of necessity but by sheer love and devotion, how to define their courage? I've been given no other choice but to follow this road, but for my wife Karen exit ramps abound. And yet, by the grace of all that is good, she remains. Somehow, she remains.

Conversely, the frustrations felt by those who love us can in turn incite yet different shades of that same emotion deep within we who suffer from the disease. Despite mutual attempts to shield each other from the hurt, it's plain to see that our physical and emotional pain is causing those we love distress, and like the chain reaction that generates an atomic blast, frustration from all sides collides and mutates, simultaneously leaving too much said and too much unsaid, for the region between "dwelling" and "denial" is narrow and almost impossible to navigate. Every day small talk can become unbearably trivial, yet speaking of nothing but disease is poison for the soul. Phone calls from the concerned can come too often, or not often enough, and social invitations become objects of synchronized dread and delight. Yes, I would love to meet you at the cafĂ© for coffee, but there is this thing about the zipper on my coat, and I don't know if next Tuesday will be one of those days that I'm simply too tired to get out of bed, and if it rains my wheelchair becomes as useful as an anchor. Frustration…

Many times simply being a member of the human race in a world that naturally caters to the well can conspire to frustrate at every turn. I flip on the television and see commercials hawking products that not long ago might have filled me with consumerist desire, but now are almost comically useless to me. What am I going to do with a shiny new Jaguar? Watching a sporting event and marveling at the incredible physical talents of the athletes involved, I sometimes can't help but reflect on the fact that the man making that impossible catch is doing it with far more ease than my increasingly futile attempts to simply put one foot in front of the other. Lovers delightfully snuggling on a park bench, that business suited jackass blindly walking through a crowd oblivious to everything but his blackberry, the single eight inch step that keeps me out of countless shops and restaurants, the everyday problems with office politics and petty relationships that so consume the healthy but, through the lens of far greater troubles, have now been revealed to be nothing more than trivial distractions. Frustration. Never-ending, unrelenting, heartrending frustration…

On an entirely different plane are the frustrations large and small of becoming trapped in indentured servitude within the universe of modern medicine, as a chronically ill patient must be. It didn't take all that long for me to go from being blissfully ignorant about some faraway malady called Multiple Sclerosis to the shocking realization that the gleaming miracle machine commonly presented as 21st-century medicine is simply a tremendous ruse. Despite all of its high-tech wizardry and and the considerable brainpower of its highly trained physicians and healthcare practitioners, modern medicine is first and foremost a fantastic engine for generating astronomical wealth for a gaggle of corporations, often at the expense of the very patients it purports to benefit. In many ways it's a money machine that feeds on sick people. Multiple Sclerosis, because it has revealed only enough of it secrets to make its treatment a highly profitable endeavor, is almost the perfect disease to unmask the sleek veneer of modern medicine and reveal the unsightly leviathan within.

For those "lucky" enough to have one of the more treatable forms of the disease, the medicinal remedies offered make all too real the expression "pick your poison". None of these medicines do anything at all to address the still unknown underlying cause of Multiple Sclerosis. Instead, by modulating or suppressing the intricate and poorly understood human immune system, they temper the paralyzing attacks suffered by those with Relapsing Remitting Multiple Sclerosis, without doing a damn thing to cure them.

These drugs do increase the quality of life of many of those taking them, as fewer relapses certainly make for a more pleasant existence, but at best the evidence shows that they may slow down the eventual progression of the disease, but they certainly don't stop it. As an added kicker, all of these medicines carry with them troublesome side effects. The least effective "Disease Modifying Drugs" commonly make those taking them suffer from "flu-like" symptoms, which, roughly translated, means they make people feel like shit. Better to feel like shit then suffer from paralyzing MS relapses, but certainly no panacea. Furthermore, these drugs only help about one third of the people taking them. How's that for frustrating?

The newer, more effective (and more costly) drugs profoundly impact the workings of the human immune system, and carry with them the possibility of some terrifying side effects, including brain infections and cancers. None are ever trialed for more than two or three years, so their long-term effects remain unknown, but patients are expected to rely on them for a lifetime. What affect will disabling half of my immune system have in five or 10 years? Well, we don't know, but just sign on the dotted line and let's hope for the best. Frustration…

Those like me, with the progressive forms of the disease, who don't suffer "attacks" but instead experience a slow and steady decline, are left with the choice of doing nothing, practically assuring a gloomy outcome, or partaking of the above-mentioned remedies, with little hope of experiencing the benefits realized by the folks who suffer relapses. Since I personally find the idea of doing nothing anathema, I've subjected myself to the full gamut of therapies and concoctions offered up by modern medicine, despite the knowledge that chances are they would likely do me no good. Indeed, this has been the case. I've received no benefits from these shots in the dark, and rather than simply do me no good, some of them have actually worsened my condition. Frustration, self doubting, 20/20 hindsight frustration…

And now we have the hope of CCSVI, the so-called vascular theory of MS. After decades of largely fruitless research focusing on the immune system, there comes the stunning revelation that abnormalities in the veins that drain the central nervous system may play an integral part in the MS disease process, and perhaps might even be the long-sought cause. Even if not the cause, anecdotal evidence suggests that at the very least, the clearing of these abnormalities through the use of a relatively simple, minimally invasive surgical procedure may relieve some of the symptoms borne by those with the disease.

Instead of the eager cooperation one might expect to find between the various medical disciplines required to fully test the theory, we get an eruption of the equivalent of a medical food fight, with researchers, physicians, and politicians brawling over how and even whether to test the hypothesis. Patients, at last energized by an intoxicating dose of hope, are caught in the middle, looking on incredulously as academic and bureaucratic arguments delay the relatively simple trials that would be needed to prove or disprove the theory. If there were pharmaceutical fortunes to be made from CCSVI, you can bet your ass that sophisticated trials would have commenced long ago. But no, corporate profit potential is lacking, and so it has been left largely to the patients themselves to foment what could be a medical revolution. Frustration. Angry, seething frustration…

How to deal with the many hued variations of frustration met by those dealing with Multiple Sclerosis? If only there were an easy answer, a meditation or incantation that would simply make it all fade away. But no, we must be steadfast through the storm, letting neither the past nor the future cloud our experience of the present. All of the emotions engendered by Multiple Sclerosis, frustration included, give every one of us dealing with the disease the perfect right to curl up into a ball and bemoan our fates in a deserved orgy of self-pity. And perhaps it's best that on rare occasions we allow ourselves to do just that, to let loose with a guttural wail of anguish. But for the vast majority of the time, we must steel ourselves to take control of our emotions, to experience each day moment by moment, making the numberless conscious decisions that allow us to not only survive but to thrive in the face of undeniable and treacherous adversity. We must not deny ourselves the right to contentment, for contentment and even happiness must be created by every individual from within, attained by a total immersion in the moment, and finding that small kernel of good always contained in the now. We cannot deny our feelings, but we can work with them to discover our own very personal sense of ease, frustrations be damned.