Friday, December 21, 2012

Bits and Pieces: Doomsday/Happy Holidays Edition

English: An engraved illustration of Santa Cla...
English: An engraved illustration of Santa Claus and what may be Mrs. Santa Claus from the 1878 book "Lill's Travels in Santa Claus Land and Other Stories", by Ellis Towne, Sophie May and Ella Farman. Artist unknown. (Photo credit: Wikipedia)
Well, if the Mayans are correct, this might be one of my least read posts ever. Yup, as I write this, the doomsday allegedly predicted in the Mayan “Long Count” calendar, December 21, is only 2 ½ hours away. According to end of the world aficionados across the planet, the Mayan calendar ends on Friday, December 21, 2012. The ancient Mayans were remarkably expert astronomers, and their calendar was able to predict celestial events, such as eclipses, centuries in advance. Even more incredibly, they also predicted that their prophecy would provide cable television’s History and Discovery Channels with fodder for an endless amount of doomsday programming. If it weren’t for the Mayan doomsday, ancient aliens, and Nazis, these two media outlets would be forced to put up a test pattern 24 hours a day. Not that I’m complaining, because there’s nothing I like to watch more than Nazi aliens causing doomsday (much to Karen’s dismay). If the Mayans were correct, tomorrow should be interesting.

If, on the other hand, the Mayans weren’t correct, and the world doesn’t end in a terrifying cataclysm of meteor showers, catastrophic Earth changes, floods of biblical proportions, alien invasions, magnetic polar shifts, or a lack of cable programming, then Ho Ho Ho, Happy Holidays! Hope you were nice and not naughty this year, otherwise jolly old St. Nick will leave nothing but a lump of coal in your stocking. I can think of a few less savory lumps he might leave, but I suppose coal is disappointing enough to get the point across. Besides, if the Mayans were right, and doomsday strikes but you actually survive it, that lump of coal might come in pretty handy. So, this year you may be better off having been more naughty the nice.

To my mind, though, being really nice includes a prerequisite bit of naughtiness, so I’m not quite sure how Santa Claus actually divvies up his list. The naughty/nice divide is surely not black and white, but I guess that’s why Santa Claus gets paid the big bucks. Please, though, don’t tell me that stuck way up there in the North Pole with just Mrs. Claus and the elves that no naughtiness ensues. For Santa’s sake, I hope that Mrs. Claus makes liberal use of the Victoria’s Secret catalog…

Be that as it may, here’s this month’s selection of mostly MS related news tidbits that caught my eye over the last several weeks. Hope you find them entertaining and/or informative. If you don’t, feel free to pelt me with your lumps of coal, because I’m pretty sure that naughtiness is pandemic among the Wheelchair Kamikaze readership.

♦ I'd like to give a shout out Healthline.com (click here), which recently named Wheelchair Kamikaze the "Best MS Blog of 2012". Healthline is an extremely valuable patient resource, whose mission is to “improve health through information”, by providing readers with “objective, trustworthy, and accurate health information guided by the principles of responsible journalism and publishing.” One of the site’s unique features is an interactive, multimedia “MS Assessment Tool” (click here), which allows patients to objectively assess the state of their disease, and thereby make more informed treatment decisions. It’s really pretty cool. Actually, it would be cooler to have no need to use an MS Assessment Tool, but we can only play the cards we’re dealt. Healthline's Facebook page (click here) offers patients a rich social media experience for learning and interacting with others.

♦ At the risk of appearing like a gluttonous blog award whore, Wheelchair Kamikaze has also been nominated for a “Best in Show” award by Wegohealth. If you’d like to endorse that nomination, you can do so by using the badge located on the upper left-hand column of this page.

Okay, shameless self-promotion over.

♦ On the clear as mud MS research front, we have two interesting studies that looked at whether or not the interferon drugs effectively delay the progression of MS disability. The answer is a resounding “No” (click here). Also, a resounding “Yes” (click here). That’s right, two studies, two entirely different conclusions.

Okay, to be fair, the studies didn’t look at quite the same parameters. In the first study, the interferons (Avonex, Rebif, and Betaseron) showed no efficacy in delaying progression of disability to EDSS score 6, which basically translates into needing a cane to walk 100 m. This study compared contemporary treated patients, contemporary untreated patients, and an historical group of patients derived from older patient histories tracked before the interferon drugs were available. The results of the study are actually a little bit confusing, as the untreated contemporary patients time to EDSS 6 was 4.0 years, while treated patients took 5.1 years to reach the same level of disability, which would seem to indicate that treatment did have a beneficial effect on disability progression. The historical group took 10.8 years to reach the same EDSS score. However, more than twice the number of treated patients than untreated patients eventually reached EDSS 6, and four times as many reached that point in the historical group. When researchers mixed all of this data together, their conclusion was that the interferon drugs showed no beneficial effect in delaying progression. Confused? Me too.

The second study looked at whether or not the interferon drugs delay the transition from RRMS to SPMS. As all diligent MS patient should know, transitioning from RRMS to SPMS is not a good thing, as progressive MS has few if any effective treatments, and progressive patients generally experience a slow and steady increase in disability, without the benefit of any remissions. This study, conducted in Sweden, compared contemporary patients treated with DMDs with a historical group of patients from 1950-1964, decades before the DMDs were available. Although the abstract does not provide concrete numbers, the researchers conclude that the DMDs do delay the onset of SPMS, which, if true, is a very good thing.

So, what to make of these studies? I think that the only real conclusions that can be drawn are that no conclusions can be drawn. It appears that the CRAB drugs are more effective than many anti-drug advocates would have it, and less effective than mainstream neurology would like patients to believe. In the end, each patient must make their own decisions based on their own experiences. There does seem to be a growing body of evidence that shows a “window of opportunity” early in the RRMS disease process, when nearly all treatments are most effective. Once this window closes, it seems that the beneficial effects of the current MS treatments fall off dramatically. Personally, if I were a newly diagnosed RRMS patient, or a patient early in a course of relapsing remitting disease, I would opt to go with treatment. But again, that’s just me; each patient, in conjunction with their doctors, must assess their own situation, which, as the above shows, can be no easy task given all of the conflicting information.

♦ As patients, we must never forget how wonderful our caregivers are, if we are lucky enough to have good ones. It’s very easy for the strain on the caregiver to take a backseat to the problems of the patient, but the disease takes a terrible toll on all it touches. A study out of Mexico (click here) attempted to examine the impact of MS on the emotional health of caregivers. Researchers found that 40% of the caregivers they studied met the criteria for “probable major depressive disorder”. They furthermore found that the symptoms most likely to cause distress in caregivers were patient depression, difficulty talking, difficulty hearing, becoming upset easily, and upsetting other people. Patient symptoms causing the lowest average level of distress for caregivers included difficulty learning, seizures, trouble reading, difficulty eating, and difficulty writing. I found this surprising, as it seems that the symptoms that might be most troublesome to patients were found least troublesome to caregivers. This just illustrates the complexity of the patient/caregiver relationship, and the fact that 40% of caregivers were found to be clinically depressed speaks volumes of the hideous nature of multiple sclerosis. If you’ve got someone who cares for you in a loving, supportive manner, please take this holiday season to make sure they know just how much they are loved and appreciated.

♦ A while back I posted an essay that talked about how hard a job it can be just to be sick (click here), with seemingly constant battles with insurance companies and other organizations and individuals in the medical industrial complex. This opinion piece (click here) from the New York Times, written by a prominent business journalist who found himself in a mindbending skirmish with his insurance company when he simply tried to find out how much the pill that controls his blood cancer would cost, is a terrific example of just how maddening the “job” of being a patient can be. The article is really a must-read for anybody caught in the lunatic web of modern medicine as it is now practiced.

♦ The Scottish island of Orkney one of the highest rates of MS in the world, with one in 170 women on the island suffering from the disease. Researchers now think that the Viking ancestry of Orkney residents may be to blame (click here). Studies have shown that half the general population of the Orkneys originates from Scandinavia, and other studies show that areas colonized by those with Viking ancestry have higher incidences of MS as well. For example, in Canada the provinces colonized by the English and Scots have higher rates of MS than does Qu├ębec, which was colonized by the French. This would obviously point to a genetic link to the disease, although other factors must be in play as well, such as a lack of vitamin D (the places studied afforded their residence very limited sun exposure), as well as environmental elements. Furthermore, researchers found that even within Orkney there were “hotspots and cold spots. Some isles and parishes and villages had much increased rate and in other parts there were hardly any residents who had it.”

And all along I’ve been thinking that the worst thing about the Vikings was all the raping and pillaging. Now I can add MS to my list of Viking grievances. In the Vikings favor, though, is the fact that one of their kings was named Ivar the Boneless (click here), which is one of my favorite names in all of history. If there is anything to his name, good old Ivar may have been disabled (there are other interpretations, including that he might have been impotent), but that didn’t stop him from leading a brutal invasion of England. And this was way before there were any laws mandating the rights of the disabled.

So, with cheerful visions of Ivar the Boneless pillaging and plundering with his apparently wet-noodle like appendages dancing in your head, I bid you all the happiest of holiday seasons. May the coming year bring you copious amounts of good health and an abundance of happiness. May your fondest holiday dreams come true, and always remember that the greatest gift of all is love shared between family and friends.

Here’s a classic Christmas tune, sung by the always alluring Eartha Kitt, with some, um, unusual accompanists. I believe that this video proves that Boy George is a time traveler. Happy holidays!…


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Thursday, December 6, 2012

I Miss Me

Reflection
I miss me.

Reduced to its essence, the Gordian knot of emotions in which I find myself evermore entwined as my disease progresses can, I think, be summed up in those three short words. All of the anguish, fear, confusion, sadness, mourning, determination, courage, nerve, and the dozens of other emotions engendered by my brawl with chronically progressing disability, when condensed and whittled down to their core, can be expressed by these seven letters: I miss me.

Though the words may be simple, the sentiments they embody are anything but. They touch on matters physical, emotional, and spiritual, an explosive critical mass of feeling that has become a constant companion, one that can be quieted at times by distraction and determination, but is never entirely hushed. Though I strive to make the best of a bad situation, there can be no denying it. I miss me, in so many different ways, I miss me.

I miss my right arm and leg, which although still a part of my body have become maddeningly uncooperative, more a hindrance than help. My left side is weak and getting weaker, and a peek through the curtains at what this foretells of my future is almost too frightening to look at. Was it only a dream that I was once able to use these balky limbs as if they were on automatic, most operations being carried out by commands issued on a level somewhere below willful consciousness? Now it seems even the simplest task takes at least a modicum of planning and forethought, more complex operations requiring creativity and the pushing of physical limits, while many others have become simply impossible.

What wondrous things my four working limbs were once able to accomplish! Walking, running, climbing stairs, dancing, yes dancing! Writing, drawing, typing, gesticulating, hugging! And that was just the easy stuff. My mind can still reach back to conjure up ghosts of the exhilaration created by driving a convertible sports car way too fast, one foot pressing hard on the gas pedal, the other commanding the clutch, left hand on the steering wheel and right on the stick shift, all four limbs working in concert to marry me with the machine. I can almost make real once again the feel of the road and the song of the engine caressing my body as I downshift into a turn, the nimble automobile an extension of my physical self, its throaty growl mixing with the warmth of the sun on my skin and the fingers of wind messing my hair to intoxicate the senses. No matter how hard I try, my current set of wheels cannot come close to what once was. My wheelchair just can’t cut it.

I miss the me who was free of illness, as flawed and discontented as that creature often was. If only I could trade my new troubles for those that used to keep me awake at night. I was really quite the neurotic, regularly going toe to toe with the demons of a multitude of anxieties, at times, methinks, seeking out reasons to be troubled. In retrospect, it just may be that I was more comfortable with feelings of distress than with those of joy. Boy, was I hard on myself.

Affairs of the heart were a special bugaboo, and one that I cultivated like an expert gardener, consistently hitching my wagon to “partners” who were like cyanide for the soul. I had the unfortunate talent of being able to latch onto the one woman in any crowded room who would cause me the greatest heartache. In matters of career, although I steadily climbed the so-called ladder of success, I often found myself working in settings that were absolutely suffocating. Although the work I did was creative (video production/editing), for long stretches I did it in extremely corporate environments, a square peg shoved into a round hole. Some people thrive in the highly structured atmosphere of corporate America, finding security and challenge in the hierarchy and politics of the workplace, but for me the necktie I had to wear each day was a noose, the office walls a prison. Each day I’d act a role I just wasn’t born to play, until my sense of self became twisted and blurred.

So what was there to miss, you might ask? Now that my old healthy life is just about completely divorced from the one I currently lead, I can see just how pregnant with possibility those times truly were. It was all really just a matter of choice. It wasn’t preordained that I find myself in unhealthy romances, and it certainly was within my purview to pursue work in situations more to my liking. The opportunity to create my own joy was infinite; the only thing holding me back was me, and the emotional baggage to which I stubbornly chose to cling. I was only as stuck as I allowed myself to be. If only I could reach back through time and give myself a good talking to. A common lament to be sure, but one made all the more keen by the knowledge of just how finite that precious healthy time turned out to be.

And besides, even through the bad times I had my share of fun, as I was always a bit of a rascal and a habitual night crawler. God, how I miss getting good and drunk, sitting with friends in a bar nurturing that happy oblivion. These days, booze only makes my symptoms exponentially worse, an effect that lasts for days after my imbibing. Also, alcohol on top of all of the pharmaceuticals I take to control those symptoms might very well put me in a coma. Dastardly disease.

Thankfully, in the years immediately preceding my diagnosis, I finally did learn some of life's lessons, and effectively changed my reality much for the better. I met and married a wonderful woman possessed of a truly good soul, and found work at the top of my profession, in an environment that, despite being world-class, was at times almost wanting for structure. Things were definitely looking up until that day almost 10 years ago when my right knee strangely buckled, and with it almost the entirety of my life over the next few years. Which brings me to the me I think I miss the most, the me that might have been.

Where would my path have a lead had I somehow dodged the cannonball of disease? I was diagnosed only one year after I was married, and although my wife has miraculously stuck with me, our life together is a far cry from that which we had once imagined. Eagerly dreamt of adventures abroad have been replaced by an endless parade of visits to a procession of doctors as my condition steadily worsened and my diagnosis became less and less clear. Weekends spent strolling hand-in-hand through the city and Central Park proved to be all too few, in their stead now the occasional walk and roll down the street together, my one functional arm and hand operating the joystick of my wheelchair, not slung across the shoulders of my betrothed, holding her tight. We make the best of it, and still manage to have a good time, but our husband-wife relationship now must make room for a patient-caregiver dynamic as well, making all too true the vow “in sickness and in health”.

At the time my disease forced me into “retirement” over six years ago, I was heading up one of the premier DVD production facilities in the world, and had played a key role in making of some of the best-selling music related DVDs on the market, some selling hundreds of thousands of copies. In the time since, the technology has moved to Blu-ray discs and streaming video downloads, a path my career likely would’ve followed as well. Would I today be working on providing content in its many forms for the explosion of media outlets driven by the Internet and portable devices? Would I have had a hand in perfecting 3-D technologies, or perhaps vehicles for entertainment and information distribution that are only now on the drawing boards? Might my career have morphed into something completely unexpected, and perhaps more fulfilling? For even though I had made it to the big leagues, I still felt that something was lacking, as my responsibilities had shifted from the creative to the administrative as I made my way up the totem pole. Would I have forged a chance to realize my creative ambitions? What new places might I have visited, what new people might've I met, what new experiences might have thrilled me? So much left unknown, and forever unknowable.

With all of that the disease has taken away, it has also bestowed some unexpected positives. Not working has afforded me the freedom and luxury of time, allowing me to pursue long neglected interests like photography and writing that had taken a backseat to my career and social life. The realities of creeping paralysis have provided insights and perspective into that which is truly important, and turned some philosophical abstractions into concrete strategies for coping and survival. I’ve learned the immeasurable value of kindness to others, and especially to myself, perhaps the hardest form of kindness to practice. Seizing the day, living in the moment, and mindfully occupying the now have all been transformed from platitudes into realities vital to maintaining serenity and sanity in the face of ever progressing disability.

Although it was already well-established, my sense of the absurd has germinated like a vine in a tropical rainforest, as the line between tragic and absurd is challenged daily by not only the disease but also all too frequently by the labyrinthine and often asinine medical establishment that exists ostensibly to treat it. Learning to accept help, and sometimes even ask for it, has strengthened my ties to humanity; truly no man can live as an island. Without doubt the most unexpected gift of all has been the response to this blog, which never ceases to shock and humble me. The idea that I might somehow be providing a form of comfort and assistance to my fellow travelers down this trail of blind curves has made what may very well have been unbearable bearable, and is something that I am thankful for every moment of every day.

But still, I miss me.

A lot.



(Wheelchair Kamikaze has been nominated for a "Best in Show" award by the good people at wegohealth.com. If you'd like to support this nomination, please give it your endorsement by using the badge at the very top of the left-hand column of this page. Please, don't feel obligated. Thanks.)



Addendum: this post has generated some tremendously insightful and moving reader comments. I'd urge anyone who found value in the above essay to read through these entries by clicking on the comments link, below.

A big "thank you" to all who commented. Your contributions to this blog are appreciated beyond words.

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