CCSVI: Three Years On, Some Thoughts and Observations

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It seems almost incredible, but it's been nearly 3 years since I wrote my first Wheelchair Kamikaze post on CCSVI (click here). At the time of that first post, CCSVI had hardly been heard of outside of some researchers in Italy and a few dozen patients debating the merits of the hypothesis on an Internet forum. Today, CCSVI has become a patient driven social media medical phenomenon. An estimated 25,000-30,000 patients have already undergone CCSVI treatment, researchers from around the world are investigating the hypothesis, and the surgical treatment of CCSVI has become a thriving industry. CCSVI has certainly come a long way, but in many ways we've only taken the first steps on what could be an epic journey.

Last week, the International Society for Neurovascular Disease (ISNVD) held its second annual scientific meeting, which lasted five full days, in Orlando, Florida. A tremendous amount of information about the nature and treatment of CCSVI was exchanged by researchers and physicians, a compendium of which can be found in a 106 page online PDF publication put out by the Society (click here).

Of most interest to patients are undoubtedly the treatment outcomes reported by several CCSVI treatment practitioners (which can be found on pages 62, 79, 83, 84, 86, and 87 of the PDF), which displayed a wide variety of treatment outcomes, but do seem to suggest several identifiable trends. It appears that quality of life issues (fatigue, cognitive issues, heat sensitivity) saw more benefit post treatment than mobility related issues, and that RRMS patients fared better than patients suffering from SPMS or PPMS. None of these studies was double blinded, all being observational and most relying on self-reported information, which can lead to inaccuracies. Still, the findings generally fall in line with some of the few double blinded studies that have been done, such as a recently completed study done in Italy (click here). CORRECTION:an anonymous reader points out that this Italian study was in fact not double blinded, and just used an independent physician to evaluate EDSS scores. Thanks for the heads up.

The meeting did bring into focus the fact that the CCSVI treatment protocol is far from standardized, with physicians varying in opinion on issues ranging from which veins to treat, whether treatment should concentrate on valves rather than the veins themselves, the use of intravascular ultrasound, and other important issues, a list of which can be found on pages 104-106 of the PDF document linked to above. There were quite a few presentations on the use of noninvasive imaging techniques (Doppler Ultrasound and MRV technology) to diagnose CCSVI, with the consensus appearing to be that neither method was especially accurate, except for extremely specialized MRV protocols that are practiced at only a few facilities. One leading CCSVI practitioner went so far as to state that he no longer requires his patients to undergo Doppler Ultrasound investigations before venoplasty, since the ultrasound results were found to be so prone to error (page 63 of the PDF).

In addition to presentations involving CCSVI treatment techniques, some important observations about the nature of the condition were also presented. The effects of reduced blood flow through the brain were discussed, as was the possible connection between bloodflow disruptions and a breakdown of the blood brain barrier, and the role of iron deposition in the MS disease process. In all, my impression (keeping in mind that I did not attend the meeting) is that the findings presented at this year's ISNVD scientific meeting were more evolutionary than revolutionary, which I suppose is something to be expected. The explosion of interest in CCSVI amongst interventional radiologists and research physicians must logically lead to attempts to fill in the many gaps of knowledge that remain in regards to CCSVI, before more dramatic leaps in understanding can be accomplished.

This eruption of interest in CCSVI within the interventional radiology community is in some ways a double-sided sword. On the plus side, it has given patients access to treatment, which in the early days was extremely hard to come by. Today, patients have their choice of treating physicians, and must do their due diligence when choosing which physician in whose hands to place themselves. As noted above, treatment techniques and philosophies vary widely from physician to physician, and patients exploring the possibility of CCSVI treatment should not be shy about asking questions in an effort to find a doctor whose treatment modality best fits their comfort level.

On the potentially negative side, CCSVI has become big business. With CCSVI treatment procedures costing about $10,000, and somewhere between 25,000-30,000 patients already treated, a little math reveals that treating CCSVI has already generated hundreds of millions of dollars in gross revenue for treating physicians. Yes, those procedures covered by medical insurance probably don't get reimbursed at the full rate charged, but this is likely made up for by patients who have undergone multiple procedures because of CCSVI's ongoing problems with restenosis. Given the fact that the number of treated patients represents only a tiny percentage of the worldwide MS population, it's easy to see that CCSVI treatment could quickly develop into a multibillion-dollar a year enterprise.

The David vs. Goliath narrative that has driven the CCSVI story thus far may soon become obsolete. To be sure, the neurology community still remains incomprehensibly steadfast in its negativity regarding CCSVI, but this is becoming counterbalanced by the enthusiasm of the interventional radiology community, and, I suspect, by the interests of the medical device manufacturers, who also stand to profit greatly should CCSVI become an accepted treatment option for MS patients. Despite the fact that very legitimate issues remain regarding the efficacy of CCSVI treatment and the lack of a consensus as to optimal interventional techniques, CCSVI treatment is being aggressively marketed by several US and international treatment facilities, which should raise some ethical questions.

Until issues with effectiveness and technique are satisfactorily answered, the CCSVI treatment procedure must be considered an experimental one, a fact that should not be lost on patients who are understandably desperate to address their illness but are faced with a dizzying array of statistics, patient testimonials, and marketing efforts by for-profit ventures. In a very real way patients who choose to undergo CCSVI treatment at the current time are guinea pigs, a fact that I understood explicitly when I underwent my venoplasty back in the dark ages of CCSVI, almost two years ago. Although we've come a long way since then, in some ways the procedure remains as experimental as ever, as physicians treat a much wider array of veins much more aggressively than they did back when I underwent the procedure. Though the treatment is a minimally invasive one, it is not without risks, as is evidenced by the contingent of patients who have experienced clotting issues and vein thrombosis in the aftermath of their procedures. Indeed, one of the presentations at ISNVD highlighted a patient whose condition worsened after treatment (page 89 of the PDF), a rare occurrence to be sure, but a possibility that must factor into the decision-making process of patients considering venoplasty.

One of the most volatile controversies raging on CCSVI forums and social media sites is whether or not the condition is a cause or effect of multiple sclerosis, with those arguing for CCSVI as cause often citing the fact that the venous abnormalities being found appear to be congenital (developed in the womb) in nature. I am unsure as to the question of cause vs. effect, although I do believe that if CCSVI is a cause of MS, it is only one of many factors involved in the initiation of the disease. Even if the vascular defects being found in the veins of MS patients are congenital, this does not necessarily mean they are a cause of multiple sclerosis. There are many congenital defects that cause no adverse effect whatsoever, and I'd venture to say that many of us have some physical trait somewhere in our bodies that is outside of normal variance.

We've all heard stories of world-class athletes suddenly collapsing during or directly after extreme physical exertion. Quite often, the follow-up story is that the unfortunate athlete was a victim of a congenital heart defect, which would never have been noticed had that person not pushed his body to physical extremes. Had they not been athletes, they very well could have lived a normal life span. Likewise, a person born with congenitally abnormal ligaments in their knees might never know of their condition unless they encounter an environmental element (such as a hit to their knees) that brings their abnormality to the fore, in the form of a knee injury more severe than that which might have been suffered by a person with "normal" ligaments. Given the varied elements that have been linked to MS (infectious agents, exposure to toxins, vitamin deficiencies, genetic markers, etc.), a likely scenario is that vascular abnormalities play a part in predisposing an individual to developing MS when exposed to an unfortunate storm of other factors.

To my mind, it is becoming increasingly clear that, despite our greatest hopes, CCSVI is only a part of a much bigger and more complex MS picture. Precisely how big a part it plays is still open to question. Although CCSVI treatment does appear to benefit many patients, it has also been shown to be of little or no value to many others. CCSVI does not explain some of the factors that have previously been established about MS, such as the geographic distribution of the disease (click here), the male-female ratio that is well known to exist in MS (click here), the existence of "multiple sclerosis clusters" (which would seem to point to an infectious cause-click here), or the unmistakable link between MS and Epstein-Barr virus (click here). Nevertheless, CCSVI offers the promise of opening up whole new areas of research into the causes of, and treatments for, multiple sclerosis. Certainly, interested MS patients should investigate the possibility of CCSVI treatment, and make a sober assessment as to whether now is the proper time for them to jump in.

There are several ongoing research projects that should further illuminate the CCSVI picture scheduled to publish results later this year, but further robust and expeditious research is desperately needed. It is essential that we ascertain just how prevalent CCSVI is in the healthy population, gain a better understanding of the role, if any, of vascular abnormalities in the MS disease process, determine which MS patients respond best to CCSVI venoplasty, refine the techniques used to treat CCSVI, reduce the number of patients who experience restenosis, and see the development of surgical implements specifically designed to treat venous abnormalities. Neurologists need to get on board to provide interdisciplinary expertise to CCSVI studies. After all, whatever the results of the research, positive or negative, answering these questions can only be in the best interest of their patients.

CCSVI has come a long way, but there is still a long way to go. Thankfully, the pace of CCSVI research is gaining momentum, and hopefully we will see answers to many of our questions sooner rather than later. In the meantime, my best advice is to educate yourself to the best of your ability, be your own most powerful advocate, and make treatment decisions based more on reason than emotion.

Another Medical Industrial Outrage: Vital Drugs In Short Supply Because of Low Profit Margins

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Well, here's a story that warms the heart. The chemotherapy drug methotrexate, which has been used to treat progressive forms of MS and is vital for the treatment of perilously ill juvenile leukemia patients, is in such short supply in the United States that cancer patients just might start dying due to its scarcity.

Is methotrexate some exotic new compound facing manufacturing difficulties due to the complexity of its chemistry? Does the shortage stem from a sudden rise in the population of patients suffering from a certain type of leukemia? Has the drug been found to be potentially harmful, or difficult to work with? The answer to all of these questions is no, and, shockingly, the underlying reason behind the shortfall of this essential medication is that manufacturing it simply does not generate enough profit.

Methotrexate is an old drug, first developed over 60 years ago. The patents that protected the original maker of the drug from competition expired decades ago. Therefore, the drug is now available only in generic form, and in a pharmaceutical universe where newer drugs can fetch over $100,000 per patient per year, methotrexate costs only a few bucks per dose. When used to treat patients suffering from Acute Lymphoblastic Leukemia, a particularly virulent form of the leukemia which typically strikes children from 2 to 5 years old, the drug can cure over 90% of the estimated 3500 juveniles diagnosed with the disease in the US each year. Great, right? A cheap, effective drug that successfully treats a horrible illness that kills children, what better example could there be of the triumph of modern medicine? Well, not so fast. Turns out the saga of methotrexate and other generic medications also suffering shortages are a shining example of a plague that infects the medical industrial complex that has evolved in this country over the last several decades: flat out greed.

As has been widely reported (click here), supplies of methotrexate are within weeks of running out. Apparently, one of the four factories manufacturing the drug was shut down because of "significant manufacturing and quality concerns", according to the company that runs the plant, Ben Venue Laboratories. Another article (click here) states it much more graphically. An expert on drug shortages explains that the FDA found "mold on the walls and rust from machinery falling into the vials. It really provides a very grim picture of a crumbling factory." Not exactly the image you want to have in mind the next time you reach for that bottle of generics in your medicine cabinet, but apparently factories manufacturing such drugs are the sweatshops of the pharmaceutical industry.

The shortage of methotrexate is far from an aberration. Methotrexate is one of 287 drugs that have been in short supply this year, up from 61 in 2005 (click here). The vast majority of these drugs are cancer medications, and although some of the shortages can be attributed to a scarcity of the raw materials required to make them, the bulk of the problem resides in the fact that many of these drugs are generic, and don't generate much profit for the companies that manufacture them, or the doctors who prescribe them.

Unlike most patients, who by their drugs from pharmacies, cancer patients often purchase their chemotherapy drugs directly from their oncologists, a system that developed decades ago, when only oncologists would handle the toxic materials and the drugs were relatively cheap (click here). Some oncologists rely on drug sales for half of their yearly revenue. These days, Medicare reimburses oncologists 6% above the wholesale cost of the drug, giving the physicians ample reason to prescribe newer, brand-name drugs (more expensive, more profit) rather than older generic drugs (less expensive, less profit). In turn, the demand for lower-cost generics has been driven down, making their production a low profit venture.

Problems arise when there are no newer, more expensive substitutes for the generic drugs, as is the case with methotrexate and the treatment of Acute Lymphoblastic Leukemia. To make matters worse, drug manufacturers are currently not required to inform the Food and Drug Administration when supplies start to run short, so the FDA might have opportunity to ask other makers to ramp up production before the drugs in question run out, as happened earlier this year with Doxil, a compound used to treat ovarian cancer. A bill introduced in the U.S. Senate in this month would require drug manufacturers to alert the FDA of any pending shortages, or if they were ceasing production of a drug. The FDA, though, has no enforcement authority in these matters, and can't dictate the manufacture of drugs in short supply. In the case of Doxil, which was in dangerously short supply for about eight months, the FDA recently worked out a deal with an Indian pharmaceutical manufacturer to supply the US with a replacement drug.

Clearly, the system is seriously broken. It would be bad enough if we were talking about over-the-counter cold remedies, but the drugs in question save lives every day, or at least every day that they are available. Our system of medicine is rotting from the inside out due to the corrosive siren song of hugely profitable blockbuster medications and dizzyingly expensive treatment protocols, which admittedly can be of great benefit to some patients, but have fundamentally changed the way medicine is researched and practiced in the USA. The Europeans have handled the similar situations by mandating higher prices for generics, thereby making them more profitable. Brand-name drugs are generally cheaper in Europe as well, and as a result European countries have not experienced shortages of these same cancer drugs. For better or worse, the US has no such mechanism to dictate prices, and there is no easy fix to the problem. One has only to imagine the agony of a parent watching their child die for lack of a medication to understand at a guttural level the huge import of this problem. What a god-awful mess…

One

One is the loneliest number, at least according to a song written by Harry Nilsson in 1967 (and made famous by Three Dog Night in 1969). Though social interactions are a basic emotional necessity, for a patient plagued with increasing physical disability along with fatigue and an assortment of other symptoms, sometimes one is just about all you can handle. Chronic disabling illness often brings with it a troublesome companion: isolation, a condition that is often feared, but which has a more benign companion, solitude. The problem of isolation/solitude is a paradoxical one; although in anticipation loneliness is often dreaded, there are times, when caught in the thicket of illness, when a patient just wants to be left alone.

MS is a transformative disease, and the changes it brings can leave the afflicted feeling like some strange new breed, with the memories and inclinations of the old conflicting with the stark physical and emotional realities of the new. The disease progresses at different rates for different people. Some can remain quite active participants in healthy society for years or even decades, while others find themselves considerably disabled and their lives significantly impacted in a relatively short period of time. Whenever it occurs, when the patient is cleaved from the day-to-day existence they once took for granted, a sense of otherness can set in, as what had been a daily routine becomes anything but. Activities and actions that had once been accomplished with hardly a thought slowly become difficult and then impossible, and though the person going through these changes may be surrounded by well-intentioned friends and family who suffer their own emotional distress at the plight of their stricken loved one, the full emotional toll of mounting physical deficits can only be absorbed by one, the patient themselves.

Like the main character in Franz Kafka's novella "Metamorphosis", who wakes up one day to find himself transformed into a huge cockroach, patients experiencing progressing disability find themselves living through alarming change. Though this change doesn't occur overnight, as in Kafka's tale, it certainly can feel as if it comes on suddenly, and the physical transmutations taking place are inevitably accompanied by troublesome psychological companions. Nine years ago I was happily taking my pooch for a long brisk walk on a very cold winter’s day when I suddenly realized I was limping; fast forward to today and it's a treacherous and painful struggle to take 10 steps with cane gripped tightly in hand, and more often than not my sorry ass is planted firmly in the seat of a wheelchair. Nine years may sound like a substantial amount of time, but despite the innumerable trials and travails of the intervening years, it feels as if I took that long walk only yesterday. And though I've tried to handle my situation with as much grace, courage, and humor as I can muster, deep inside I cannot deny there exists a well contained but always present silent scream (click here to hear my silent scream).

Of course, it's of the utmost importance to stay connected with the world at large, regardless of your physical state. There is substantial danger in allowing the psychological tentacles of the disease to have their way, grabbing and dragging the emotional focus of the patient deep inside themselves. Concentrating on every new weakness, numbness, or deficit can cast a crippling spell, a self-perpetuating cauldron of compulsive anguish, whose only antidote is social interaction. The comforting give-and-take of a friendly conversation or the diversion of an outing whose sole purpose may simply be to lay eyes on other human beings can truly be a much needed balm for the soul, a reminder that though the body may be broken the spirit remains intact, and that the world is still filled with wonders big and small, even if they must sometimes be dug out from under a huge pile of crap.

Yes, human interaction is key, but the problem is that being sick takes up so much damn time. As levels of disability increase, so too does the time it takes to do almost everything. Whereas an impromptu get together with a friend for lunch may have once made for a happy couple of hours, for the disabled there is no such thing as impromptu. The simple act of getting dressed, which once was about as problematic as breathing, now presents hurdles and obstacles that require a preconceived tactical plan, especially in the colder months when such hobgoblins as sweaters, socks, coats, gloves, and scarves come into play. Depending on the patient, showering without assistance can be a daredevil high wire act or an absolute impossibility. Even if there has been advanced planning, after going through the effort of readying oneself for a guest appearance in the outside world, that day's allotment of energy may have just about been exhausted. The fatigue patients experience is not any kind of normal weariness, but an at times absolutely complete and debilitating exhaustion of mental and physical energy, which no amount of willpower can overcome. Many times, the only place I want to go after getting dressed is right back to bed.

Even the prospect of talking on the telephone can sometimes be daunting, especially to folks with whom you haven't communicated in a while. After "Hello" comes the inevitable "How are you?", a loaded question if ever there were one. It feels incredibly disingenuous to answer with a token "Oh, I'm okay", or "I'm hanging in there", but for sure the person on the other end of the line doesn't want or need to know the full dossier of your afflictions. Discussing the details of a well friends active life can sharpen focus on the deficiencies of your own, and despite honest attempts at sympathy, hearing of another's problems at times makes me want to shout "Hey, want to trade?" Shooting the breeze, sharing some laughs, and talking about anything other than illness and medicine can be incredibly uplifting, but as much joy as talking to old friends can bring, at times the prospect is overwhelming, the effort required tapping deep into the paucity of energy that is a constant companion. I must admit I have an embarrassing number of calls from dear friends for whom I have deep fondness that I've left unreturned for far too long.

Like many patients, I'm blessed with a social situation (in my case, a wonderful wife and caring family and friends) that keeps my periods of solitude, which I've come to quite appreciate, from morphing into isolation. Despite mounting physical difficulties, with effort I'm still able to get out and about on my own, to pursue my photography or just to break a bout of cabin fever. Still, as the progression of my disease continues, such outings require increasing effort, and I find I value time bereft of social responsibilities quite highly, hours spent meeting nobody's expectations but my own. I do know of many patients, though, who do suffer from isolation, whose lives are plagued not only by physical illness but by soul wracking loneliness, and to them my heart goes out. The Internet, through chat rooms and forums, offers opportunity to connect with others, if only in a virtual sense, but I know from experience that virtual friendships can indeed develop and deepen into surprisingly multifaceted relationships.

One is the loneliest number, but one can also be a source of solace as well. Persevering through chronic illness is a complicated affair, and navigating its hills and valleys, even with the solace of companions, is in many ways a solitary matter. Though others may help buffer the blows, ultimately each patient's experience is unique, and the mechanisms for coping theirs alone. Solitude and isolation are two sides of the same coin, a currency that can be prized or shunned, and in the convoluted and confused world of chronic illness, the line between the two can be fragile and blurred. Despite the difficulties imposed by illness, our connections to others are in many ways what keep us human. If isolation has too often become your domain, please make efforts to reach out; if you recognize isolation in others, please make efforts to reach in. Although the human state dictates that ultimately we all are alone, so too we are all in this together.

Related articles

• 40 Best Quotes About Solitude (ecosalon.com)

Don't Get Stuck in the Suck

(For those who receive Wheelchair Kamikaze via e-mail, this post contains a video, which can only be viewed from the WK website)

In one of my recent posts, I mentioned that having a progressively crippling disease royally sucks, but that somehow I've managed to learn how not to get stuck in the suck (click here). I thought I might expand on that idea some, in part because it's a hard yet vitally important lesson to learn, but mostly because I'd like to see the expression "Don't Get Stuck in the Suck" emblazoned on T-shirts, billboards, beer cozies, and ladies undergarments from Paris to Beijing.

I've seen and heard some folks with MS express the sentiment that their getting sick was somehow a blessing, in that it gave them a sense of perspective and allowed for a richer existence intellectually, spiritually, and philosophically. Well, more power to those people, but from where I sit watching myself slowly wither away just flat out sucks. In one of my very first blog posts, I wrote that MS sucks big fat hairy monkey balls (click here). Now, almost 3 years deeper into the progression of my disease (which is now a mystery illness (click here)), I can say with utmost surety that whatever ails me sucks something far more disgusting than big fat hairy monkey balls. At this moment I'm having a hard time thinking of anything more disgusting to suck, so let's have some fun and make this an interactive exercise. Please leave your ideas for something that's more disgusting than big fat hairy monkey balls with which you equate having your disease in the comments section below this post. Hopefully, your efforts will be both cathartic and extremely entertaining for all involved…

Okay, given that having a chronic progressively disabling disease sucks -insert super disgusting object here-, how does one saddled with such an affliction not get stuck in the suck? Well, it takes a lot of mental discipline, as well as a liberal dash of the perspective that being sick does indeed impart. Don't get me wrong, along with the "Blessed with MS" people, I readily acknowledge that the disease has led me to live a much more enlightened life, but given my druthers I'd happily go back to my former sometimes miserable and largely unenlightened but physically healthy old existence. If I could take with me just a smidgen of the wisdom that's been pounded into my head by dealing with a chronic progressive illness, all the better, but that certainly wouldn't be a prerequisite for a visit from the good health fairy. Unfortunately, I don't think the good health fairy is going to be flitting around my bedroom anytime soon, so in order to avoid getting stuck in the suck I've found that it's extremely important to not compare your circumstances to anybody else's, and especially not to yourself as you once were.

While zooming around the streets of New York City in my wheelchair, I'm usually able to keep myself amused and engaged by simply soaking up the sights and sounds of the city whizzing by, and occasionally scaring the living crap out of unsuspecting pedestrians as I careen past them just a wee bit too close. I've only actually hit maybe three people, but I'm convinced they were all really bad people. When I'm in Central Park or down by the Hudson River, I'm typically busy taking photos, watching and listening to street performers, taking in the scenery and parade of humanity, or a combination of all three. I also consciously try to not project an "I'm a victim" vibe, and approach these activities con mucho gusto, or at least with as mucho gusto as I'm feeling capable of on any particular day, which sometimes is more lesso then mucho.

This combination of outside distractions and inner focus usually keeps me from getting ensnared in any self-defeating mind traps, but occasionally the shields do go down and I find myself overcome with waves of tremendous envy for the swarms of people who can simply walk, jog, dance, ride a bike, lay out on a bench under a shady tree placidly reading a book (trying to read a book with only one working but wonky hand is damn near impossible), stroll hand-in-hand with their partner while lost in idle chatter, or do any one of the infinite number of things that I once accomplished without thought or effort but now are completely beyond my shrinking repertoire of tricks. At such moments all it takes is just a gentle push, and down into the vortex I tumble, pummeling myself from the inside out with a toxic mix of regret, chagrin, anger, helplessness, fear, panic, and dread. Into the darkest black hole I plunge, sucked in by the almost inescapably wicked gravity of big fat hairy monkey balls.

It's very hard to climb out of such a pit, and extricating myself usually entails screaming, crying, cursing the universe, and driving my wheelchair even more recklessly than usual (again, taking care to hit only really bad people). When caught in such a trap, you must not allow yourself to inflame the situation by getting down for being down, or else you'll get caught in a vicious loop, a snake eating its own tail. Admittedly, when dealing with a heinous disease, it's impossible to never plumb the depths, but it's imperative to keep such forays to a minimum. To do that, to avoid getting stuck in the suck, one must exercise control over the thoughts and emotions that create each person’s own version of reality. The treacherous shoals of agonizing self-pity constantly whisper an enticing siren song, and sometimes it's awfully difficult to not allow yourself to venture dangerously close to smashing up against some devastating inner rocks, but you can take command of your emotional rudder and steer clear. In fact you must, in order to give yourself any chance of escaping endless suffering (this goes for both sick and healthy alike).

So much has been written and said about living mindfully, occupying the moment, and staying in the now, that the sentiment has come dangerously close to becoming trite. The effort to stay rooted in the present has also been made to sound almost clinical, like some kind of joyless mental exercise as appealing as attending a psychological fat camp, but the reality of living mindfully entails joyfully soaking up all of the wonder that each moment has to offer, if only we allow ourselves the gift of recognition.

Thoughts of the past have their value, as remembering the good times and learning from the bad can certainly enhance the present, but living too much in the past is a trap of its own, stealing that most precious commodity of all, time, and preventing the creation of new memories to take their place alongside the old. When living with progressive illness, thoughts of the future can be tremendously frightening, and peering forward too often can lead to hopelessness and despair. Whatever a person's circumstance, nobody knows what the next moment may bring. As President Kennedy's limousine made that fateful left turn onto Elm Street in Dallas around noon on a sunny November day, he was the most powerful man in the world, oblivious to the horrors that lay in wait just seconds away.

Despite my piss poor physical state, I still retain enough quality of life to appreciate the hints of magic contained within most moments. For example, at this very instant I can sense the creative gears spinning in my head, and am transported by that feeling. I glance to my left and see one of my favorite vintage fedoras, a perfectly formed deep brown felt hat that's over 50 years old but is still as soft as a kitten, perched atop a tiny Adirondack chair in which sits my little plush replica of Wally the Green Monster, the Boston Red Sox mascot. Silly as it is, that little Wally makes me happy.

In front of me is a wonder that is truly enchanted, my computer, a machine that performs tricks that would leave Houdini insanely jealous. Right now it's transcribing my words as I speak them, and soon enough it will send them to some Fantasia in which people all around the world will be able to read and respond to them. The powers of this electronic wizard leave me humbled and profoundly grateful, having enriched my life in ways that are beyond words.

I look to my right and smile at just how messy my desk is, and then see a photo of one of the true loves of my life, my late great Labrador Retriever Stella, staring up at me with bright sparkling eyes, floppy ears, and a goofy smile on her face, still my faithful companion even though she's no longer here to snooze at my feet.

Outside my window, as I sit perched in the sky 18 floors up, the sounds of the city late at night create a gentle opus, a tapestry of sound comprised of the soft hum of cars and people passing by way down below, regularly punctuated by the staccato rhythms of the labors of pneumatic brakes on faraway buses and garbage trucks, all interrupted by periods of pregnant silence, these elements coming together to comprise a mellow ambience that signals tranquility to the ears of this city boy. My sweatpants and hoodie feel soft and comfy, helping to keep at bay both the emotional and physical chill of the outside world.

The fact of my disability robs this moment of none of its wonder, and if it tried I just wouldn't let it. That may change in a few minutes when I attempt to make my way to the bathroom to get ready for bed, but that moment might as well be decades away, because I am immersed in the now.

All of this does not change the fact that being sick sucks big fat hairy monkey balls, but it does help me keep from being stuck in the suck.

The below video does a much better job than I ever could describing the wonder of every moment. Its visuals and narration are simply sublime. I've been watching it at least once a day for about a week now. I hope you'll be as grateful for it as I am. Please be sure to watch it in high definition and full-screen. When the video starts playing, click on the little gear symbol on the bottom control panel and choose either 720P or 1080P to get high-definition video. For full-screen, click the symbol on the far right of the control panel.