Thursday, October 18, 2018

Welcome To The Twilight Zone (repost)

(Yes, folks, I am still alive and kicking. Well, maybe not kicking - thank you MS - but alive, anyway. The last several months have been tough but I’m clawing my way back and plan on writing some new essays soon. In the meantime, here’s an old essay from 2013, in which I describe my time in The Twilight Zone– Really!) 

A memory arrived in the mail the other day. It wasn’t unexpected, as I had ordered the item on eBay about a week earlier. My wife helped me open the package and as its contents emerged my eyes fell upon an object that seemed like a lost piece of myself, a relic long consigned to the mists of remembrance suddenly made real once again. There in my one working hand was a nearly 32-year-old copy of “The Twilight Zone” magazine, dated August, 1981, its cover as instantly familiar to me as the face of a rediscovered old friend.

I opened the magazine and flipped through the first few pages until I found the publication’s masthead, the long column of titles and names of the people who worked to publish each issue. Scanning the list, my heart jumped a bit as my eyes landed on a name that I knew would be there but which somehow managed to surprise me nonetheless. There it was, under the names of the Editor and Managing Editor, just as I remembered: “Editorial Assistant: Marc Stecker”. Me. Suddenly I was 17 years old again, as excited to see my name in print as I was the first time around over three decades past, back when all of life was still in front of me and my current Twilight Zone like circumstances were beyond imagination.

I worked at The Twilight Zone magazine during the spring semester of my senior year of high school. Because I attended what is considered to be New York City’s best public high school, Stuyvesant High, the school's bulletin board listing afterschool jobs attracted more than the usual busboy and supermarket positions most kids worked at in those days to earn their weekend money. I was lucky enough to be the first to respond to a new posting looking for a proofreader to work at a publishing company uptown.

When I nervously arrived for my interview, I learned that the publication I was applying to work for was a magazine dedicated to The Twilight Zone, one of my all-time favorite TV shows. Back then, before the advent of cable television, when we had to make do with (gasp!) all of seven TV channels, The Twilight Zone was a syndicated staple of local non-network television broadcasts. I can’t speak for the rest of the country, but in New York City the show was televised seven days a week, usually with back-to-back half-hour episodes airing late at night in glorious black and white. Even before working on the magazine, I was already familiar with virtually every episode of The Twilight Zone, having viewed most of them numerous times. I was far from alone in this expertise; in those days before video games, my friends and I would sometimes while away our time recounting the diabolically clever plot lines of Twilight Zone episodes, even though we all knew most of the shows by heart.

The original Twilight Zone series was produced in the late 50s and early 60s, the brainchild of creator Rod Serling, who introduced each episode dressed in a suit with skinny lapels and tie, a cigarette usually dangling from his fingers. The show featured off kilter tales with a very human touch that almost always ended with a mindbending twist, most episodes falling into the sci-fi/fantasy realm. In The Twilight Zone nothing was quite what it seemed, and you’d better be careful what you wished for, because wishes would often come true in unexpected and sometimes – but certainly not always – unpleasant ways. The episodes were deftly produced and directed, and were written by some of the top TV and film wordsmiths of the day. Several episodes starred actors who were already well known or who soon would be, including Robert Redford, Jack Klugman, Burgess Meredith, and Agnes Moorehead, to name a few.

Much to my surprise, after a brief interview with the magazine’s Managing Editor, I was hired on the spot. My daily tasks were devoted to assisting the very small staff of The Twilight Zone, which was primarily a two-person operation, with responsibilities split between an Editor and a Managing Editor, who were tucked away in a small office within a much large publishing company. The company's primary product was a second-tier “adult” magazine (yes, the kind featuring naked ladies – a definite perk as far as this 17-year-old was concerned), with a large staff devoted to publishing it and some sister publications. 

The Twilight Zone magazine itself turned out to be not some cheesy fanzine, but an impressive, very literate publication, featuring not only information about The Twilight Zone and other science fiction and fantasy movies and TV shows, but also original fiction in the Twilight Zone tradition. As such, every month it featured half a dozen or so new short stories by known and unknown writers, including some very famous authors such as Stephen King and Joyce Carol Oates, stories whose typewritten pages I not only got to lay hands on but help copy edit, making sure the typeset “galleys” for publication were free from mistakes such as misspellings and misplaced punctuation. For a kid with literary ambitions, this was intoxicating stuff.

As I sat in my wheelchair leafing through the yellowed pages of the old magazine, a steady stream of long dormant memories roused from hibernation. My job at the publishing house was my first foray into the everyday world of working adults, and I remember how surprised and amused I was at the controlled chaos around me. Though older and allegedly more mature, these folks seemed as full of foibles and quirks as my teenage friends and classmates. Did anybody ever really grow up?

One of the big bosses at the publishing company was a man with a hair-trigger temper 
who was plagued by physical tics that worsened the angrier he became. The editor of Twilight Zone was a fellow named T.E.D Klein (who would later become a not very prolific but well-respected horror author), a man in his mid-30s with a sharp mind and dry wit. I vividly remember the big boss flying into our office in a blind rage over some relatively minor transgression, screaming wildly as his tic ridden body increasingly took on a mind of its own, his anger manifesting  physically by his uncontrollably pounding himself rhythmically in the center of his chest with his right forearm. I of course was horrified by this bizarre scene, but I could see T.E.D desperately trying to suppress his bemusement, his face weirdly puckered as he bit the inside of his lip in an attempt to not break down in uproarious laughter at the sight of the lunatic in front of him. So, this was life in the working world of adults. How strange.

Although I only worked at the magazine part-time for six months or so before going off to college, those days were brimming with teenage drama and angst, and my time at the magazine was a heady source of pride. Not only did I get to work with the hand typed manuscripts of famous authors, but I also took part in helping choose photos and illustrations for the magazine (developing the deep crush on one of the freelance illustrators in the process), met a variety of interesting people (including Carol Serling, Rod’s widow), and generally felt very much a part of the team. 

Holding that old magazine, dating back to a time when I was about to embark on a defining new chapter of my own life story, I wistfully recalled that peculiar teenage mix of omnipotence and insecurity, the future rushing at me filled with prospects both exhilarating and terrifying. Life itself beckoned, and the preview reel that played in my mind featured visions of fame and fortune, romance and adventure, success and recognition, tempered liberally by fears of abject failure and disappointment. Despite occasional flashes of bravado, I was a bundle of neuroses back then, more Woody Allen than Mick Jagger, but still, my visions of a grand future seemed tantalizingly possible.

The notion that my life would be upended by a creeping paralysis certainly never entered my mind, even though I was an accomplished hypochondriac. I feared cancer, brain tumors, even leprosy, but the prospect of paralysis never really occurred to me. Now, with my disease continuing to progress, all of those teenage notions of what was to be are painfully bittersweet, the decades old magazine that sat in my lap their physical encapsulation. Viewed from certain angles, my current circumstances could be fodder for one of the stories contained within its pages, and it has often occurred to me that in some ways I could very well take my place as a character in a Twilight Zone episode.

I’m the wannabe writer who strayed from his path, his literary aspirations forever lingering as a painful reminder of dreams unfulfilled, until he contracted a dread disease and suddenly found his written ruminations reaching a worldwide audience through a medium that didn’t even exist when his dreams were first formed. I’m the lifelong neurotic and hypochondriac who spent countless hours and dollars on psychotherapy, whose inner demons were only put to rest through the realization of one of his greatest fears. I’m the disquieted seeker of wisdom always searching the arcane for glimmers of truth, only to grasp that which is truly important when forced to the sidelines of life, unable to apply the lessons learned to the existence he once led, the life interrupted.

I’ve written this before, but in this context I think it bears repeating. If a fortune teller had told the 17-year-old me that at age 49 I would live with my beautiful wife in a skyscraper next to Lincoln Center, that I’d sleep and wake to my own schedule, that my writings and photos would be read, viewed, and valued by people all around the world, and that I’d spend my days free from the constraints of having to work for a living, I’d have been ecstatic, convinced that all of my dreams would be realized. Of course, that seer would have left out one little detail, one slight wrinkle, an asterisk attached to the story that would make all the difference between dream and nightmare.

Yes, in The Twilight Zone you must be careful to read all of the fine print and consider every nuanced possibility. My life has seen me go from working at The Twilight Zone to living in my own private version of it, which in itself might make for an interesting episode. As Rod Serling might have said in an introduction to that episode, “Presented for your inspection, a man watching himself disappear, one side of his body paralyzed, and the other desperately trying to hold on. He finds himself oddly off-balance, his right leg immobile and his left firmly planted in The Twilight Zone…” 

So, has this Twilight Zone life delivered it’s final twist, or might there be one more to come, a happier one in my future unwritten? One can only hope, and hope is the precious legal tender of The Twilight Zone.

Cue spooky music… 



Here’s a classic old episode of The Twilight Zone, enjoy…



Sunday, August 19, 2018

Enough Already!


Sorry, but this is yet another post – hopefully the last – about my ongoing struggles with kidney pain, catheters, and UTIs (Urinary Tract Infections). I've written three previous essays in this rather regrettable series, the first detailing my waking with horrendous pain in my right lower back, which led me to visit the emergency room twice in three days (click here), the second delving into the myriad pleasures of having a catheter inserted into my wing wong (click here), and the third detailing my contracting a UTI (Unwanted Trickle Interference) as a result of that catheterization, including my belief that it may have been brought on by my neglecting to sufficiently protect myself against the evil eye (click here).

Unfortunately, although I thought that last essay would be the end of this sad saga – given my new strategy of preempting any potential evil eye by pointing out that "Life Is a Terminal Illness" every time I say something even vaguely optimistic – I was nevertheless once again beset by The Whammy. On this occasion my wretched curse took the form of yet another UTI (Unpleasant Tinkle Insurrection). Yes, after fighting off the first infection with the help of two different antibiotics, I was shanghaied by another – or perhaps a continuation of the first – just about a week after I believed I was free and clear of the woes that had plagued me for the better part of two months.

Alas, I was stupendously wrong. Just as I felt I was beginning to regain strength to levels approaching those of my old normal – which is, albeit, a level far below optimal after 15 years with progressive MS – I awoke one day feeling feverish, and upon relieving myself felt that now all-too-familiar burning sensation in my Jolly Roger, an incendiary discomfort in my nether regions that led to an immediate phone call to my urologist. After I informed him of my profuse distress, he phoned in a prescription for yet more antibiotics and told me that if these did not have the desired effect I could very well be hospital bound for some high-powered intravenous antibiotics targeted directly at whatever pernicious bug had bedeviled me. The prospect of such a visit rose forth in me the vehement desire to unceremoniously regurgitate my previous night’s supper in some spectacular fashion.

Thus began another week spent in semi-delirium, as the infection and its antibiotic foe took up arms against each other, my body an increasingly beleaguered battlefield torn asunder by the ravages of microbial warfare. To my good fortune this conflict coincided with another taking place on a ballfield in Boston, as my beloved Red Sox took on their arch nemesis New York Yankees in a crucial four-game joust, providing my disease addled brain with some welcomed diversion. The Boston nine took all four contests against the evil incarnate Yankees, which I took to be a favorable portent for the insurrection being decided deep within my innards. These UTIs (Ungainly Tallywhacker Intruders) have shown themselves to be quite the troublesome beasties, far more debilitating than I ever could have imagined.

Finally, three or four days shy of fortnight the fevers and associated symptoms relented but left in their wake a malingering malaise, a weariness and heaviness of body and spirit that has left me spent beyond reason. I can only surmise that this is the product of a physical calculus whose equation includes multiple infections; several rounds of powerful antibiotics; the bodily wear and tear of having a garden hose inserted and then five days later wrenched from my who who dilly; and days on end of fevers, sweats, and tortured sleep. 

Although the acute symptoms of this last infection subsided well over a week ago, it is only now that I have found the fortitude to put these words to paper, or, more correctly, to dictate them into my iPad whilst reclining in bed. When I venture out of bed to sit in my wheelchair I feel as if I might pass out after only an hour or so, sometimes less, like a Victorian lady prone to the vapors. Should this delicate condition persist much longer, I suppose a consult with yet another modern disciple of Hippocrates will be necessitated. I beseech the heavens above to intervene and make null and void this last option.

Egads, it appears that during my labors composing this essay I have become possessed by a ghostly essence aspiring to the literary stylings of Dickens or perhaps Melville, which I must now endeavor to shake loose from my earthly vessel. I best try reading something good and trashy, like some of my previous blog posts.

Anyway, yeah, in plain English the last few months have totally sucked. Bigly, I can tell you, sucked bigly. And, as you might by now have guessed, I am pretty much bored out of my gourd. Fingers crossed, these pages will soon be back to Wheelchair Kamikaze's usual mix of cynical looks at MS related research, self-indulgently introspective essays, and other such multiple sclerosis and Marc Stecker themed fiddle faddle. Enough already with the UTIs (Ultimately Tiresome Information), penis synonyms, and bellyaching. I'm sick of being sick, and just want to go back to being sick, if that makes any sense at all. Harrumph.

Kinahurah.

Life is a terminal illness.


————————————————————————————————————————-





My good friend Mitch Sturgeon, founder of the MS themed blog Enjoying the Ride, has written a compelling memoir, also called Enjoying the Ride. Mitch's book recounts his life both before and after MS forever altered its course, and the story he weaves makes for a fascinating read. In his straightforward and episodic style, Mitch tells tales both entertaining and poignant, including those of his special relationship with his mom, a quadriplegic from the time Mitch was a small boy. On so many levels, echoes from the past ricochet into Mitch's experience with his own progressing disabilities, revealing subtle truths and even some family secrets along the way. I recommend this book wholeheartedly, so much so that I was honored to write its forward… Enjoying The Ride is available from Amazon in both electronic and paperback versions (click here)…



Sunday, July 22, 2018

The Kinahurah Chronicles

The hamsa, an ancient symbol
used to ward off the evil eye.
I’m sure many Wheelchair Kamikaze readers have noticed that I haven’t put up a post in some time. To those who haven’t noticed I say, what’s up with that? Do you not wait for my every new entry with bated breath? Or, at the very least, with bad breath? As they say, bad breath is better than no breath at all…

In any event, the reason I haven’t posted anything in quite a while is that the hellish saga that I recounted in my last two posts lives on. Just a quick recap: in the first those two posts (click here) I wrote of waking up one morning with excruciating pain in my right kidney area, which subsequently led to two visits the emergency room. The second post (click here) reported on my joyful experiences getting a garden hose stuck up my schlong, in the form of a catheter. At the end of that post, I said I was starting to feel better and was sure “I’m in recovery mode.” Stating something so overtly optimistic was apparently a big mistake. I almost certainly gave myself a kinahurah.

For those uninitiated in the delights of Yiddish, the colorful language that once flourished among Eastern European Jews, a kinahurah is a word used to ward off a kind of jinx, an invitation to the universe or some jealous spell caster to hit you with a whammy whenever somebody (including yourself) says something even vaguely positive about you.

In practice the kinahurah works like this: somebody says something optimistic about you, like “hopefully I’m in recovery mode” – my exact words in my last post – or “you’re so smart, I’m sure you’ll get that raise,” and it’s an open invitation to getting an evil eye from the envious or from a vindictive universe. In one of those twists of language, the word can also refer to such a curse itself.

So, to ward off any potential torment, after even the faintest words of praise one quickly has to say “don’t give me (or him or her) a kinahurah,” or, simply, “kinahurah.” Growing up I spent a lot of time with my maternal grandmother, whose words were heavily sprinkled with Yiddish, and I think I heard the word kinahurah at least half a dozen times a day. I definitely should have known better than to say “hopefully I’m in recovery mode” without prefacing it by first writing “I don’t want to give myself a kinahurah, but…”.

In any event, the kinahurah got me and got me good. When the catheter was removed from my putz (might as well continue with the Yiddish theme) I thought I was out of the woods. Little was I to know that there was a big fat kinahurah waiting for me, in the form of a vicious urinary tract infection. I have never experienced a UTI before, and though I’ve heard other MS patients talk of how terrible they can be, I really had no idea.

For the first couple of days after the catheter was yanked out of my schmeckel it felt as though I was passing a parade of fire ants every time I urinated, but I figure that was just a side effect of getting a fire hose wrenched out of my schmuck. Soon enough, though, I started getting feverish, and all of my MS symptoms ramped up tremendously, leaving me almost completely debilitated. In all honesty, the following few weeks passed in what was some sort of a semi-delirium. A urine culture confirmed a UTI, and I was put on an antibiotic called Macrobid, which may have made me feel worse than the UTI itself.

Macrobid is a drug used exclusively to treat urinary tract infections, and since I’m allergic to penicillin, there were very few other effective antibiotics left to choose. Another candidate was Cipro, but Cipro doesn’t mix well with tizanidine, a drug I take to combat horrendous muscle spasms I get in the night (have I ever mentioned that MS sucks?). I unwittingly took Cipro and tizanidine together earlier in this dreadful sequence of events, and the combination was like a date rape drug. I was out cold for the better part of a full day, and I’m pretty sure my wife took advantage of me – by watching the Hallmark Channel in peace, I think.

After seven days of Macrobid, I remained so weak I could barely spend 15 minutes out of bed. Furthermore, it still felt like I was urinating razor blades and shards of glass. My urologist feared I might have developed a kidney infection, and I was put on Cipro despite the tizanidine problem. I reduced my dose of tizanidine dramatically, though, and things were tolerable.

In addition to the antibiotics I tried every sort of natural remedy I could find, some recommended by my wonderful naturopath. These included drinking unsweetened cranberry juice, downing tablespoons of raw apple cider vinegar, and eating whole cloves of raw crushed garlic mixed with honey. Turns out that crushing a clove of garlic releases a compound known as Allicin, which is one of nature’s most potent antimicrobials (click here), and raw honey also has antibiotic properties. Of course, raw garlic also wards off vampires, and, in the amounts I was eating, other human beings as well.

Now, finally, after seven days of Macrobid, 10 days of Cipro, and all of the above natural remedies, I seem to be coming around. Kinahurah! Still far from where I was before the kidney pain started, but I’m no longer trapped in some horrible fever dream, sweating garlic byproducts by the pint into my bed sheets.

I know many MS patients, especially females, suffer from recurrent UTIs and somehow manage to deal with these nasty infections, and all I can say is hats off to them. It’s long been said that females are the stronger gender, and there’s some proof.

This whole miserable episode has left me puzzling how to avoid any hint of kinahurahs in the future. I know I won’t always remember to invoke a protective kinahurah every time I say something vaguely positive or hopeful, so there must be another way. After much thought, I do think I’ve hit upon a solution.

I once asked a philosophically minded MS neurologist how it felt to be a doctor who has never cured any of his patients. His answer was surprising and succinct. He replied, “Well, life is a terminal illness, so what patient is ever really cured?”. No arguing with that, is there? A sobering thought, and one containing just enough existential angst to take the shine off of all the but the most optimistic statements, don’t you think? Maybe even enough to serve as a kind of kinahurah catch all.

So, moving forward, my strategy to combat the kinahurah will be to end all conversations, correspondences, and other communications with the phrase “life is a terminal illness.” That should counteract even ambiguously positive statements that might attract the wrath of some jealous evil eye thrower. All of my emails and messages will now be signed “Regards, Marc Stecker, Life Is a Terminal Illness,” and my telephone conversations will end with “Goodbye, Life Is a Terminal Illness.” One can’t be too careful, now, can one?

Hopefully, now that it feels like I’m urinating only lightly boiled water I’ll soon be back to posting essays on these pages more regularly. Kinahurah.

Oh, apologies to all of those who sent get well notes and messages over the last several weeks, very few of which I was able to respond. I hope to be able to resume actively corresponding shortly. Kinahurah.

Life is a terminal illness.

Tuesday, June 19, 2018

Stoned Saga, Continued…

First, I'd like to thank all of the kind souls who sent me notes of support and advice since my last post, which detailed the recent medical tumult I was going through. I apologize for not replying to any of them, as it turns out the events recounted in my last essay where only opening stanzas of a longer composition. I'm afraid most of the notes and comments sent will have to be left without response, but please know they are appreciated beyond words. And now, on with the continuation of my woeful saga.…


When last I left you, dear readers, I told the tale of my supposed kidney stone and the pain and misery it caused (if you missed my last post, click here to catch up). Well, turns out that was only the beginning of the story…


After my visit to the ER two Sundays ago, catalyzed by searing, unbearable pain in my right lower back and flank which was diagnosed as most likely caused by a recently passed kidney stone, I went home and took to the bed, expecting the pain to diminish and eventually dissipate completely. Instead, the agony steadily grew worse, so much so that I started taking oxycodone to try to take the edge off. I HATE taking opioids, because in my experience they really don't diminish the pain but just get your head so fogged up that you're not really cognizant of it or anything else, for that matter. Since my mind is one of the last things that is still fully functional, I'm quite reticent to screw with it. But the pain in my right side was intense and unrelenting, so I hopped myself up on goofballs and tried to ride out the storm.


By Tuesday afternoon, despite my being junked up on the legal equivalent of smack, the pain in my back and side had me writhing in my bed. I called the doctor and was told to get my sorry ass immediately back to the emergency room. Ugh.


Emergency rooms are surely included somewhere in Dante's Inferno, and normally I'd rather gouge my eyes out than have to deal with the ER and the minions of Satan who inhabit it. But the pain in my back far eclipsed any I would have engendered by said eye gouging, so off to the ER I went. Note: in actuality the people staffing emergency rooms are dedicated and hard-working, doing a job many others in the medical profession shun. And the ones I interacted with during both of my visits were actually quite nice and tried to make the experience as bearable as possible. But since they work in the bowels of hell, one can come to no conclusion other than that they must be demonoids. Very nice and dedicated demonoids, but underlings of the Prince of Darkness for sure.


Once back at the emergency room on Tuesday, all the tests previously done on Sunday were replicated – blood tests, urine analysis, and yet another CT scan. I wasn't thrilled about having another CT scan, since these expose you to a tremendous amount of radiation. In the case of abdominal CT scans, of which I had two in the space of two days, each exposes the patient to the equivalent radiation of 400 chest x-rays (click here). So, I will be able to read by the glow of my own belly for the foreseeable future. On a positive note, my wife and I should see some significant savings on our electric bills.


After all the tests were complete, no new significant findings were discovered except for the presence of a few white cells in my urine. This meant I might have a kidney infection, so cultures were ordered. Mercifully, while I was caught in the tendrils of Hades for hours and hours and hours the horrible pain I'd been experiencing for days started to subside, for no discernible reason. Not one to look a gift horse in the mouth, I asked no questions and was only grateful for the relief.


I was scheduled to see a urologist the following morning, and when I showed up for the appointment he took one look at the CT scan reports and immediately noted that among the findings were that I had a very distended bladder. An ultrasound revealed that my bladder was indeed quite enlarged, so the urologist informed me that I was likely retaining urine and told me he needed to catheterize me in order to drain my bladder. Yikers!


By this time I was so worn down by the events of the previous four days and my mind so bedraggled by the after effects of pain and opioids that I could barely utter a peep of protest. Before I was quite fully aware of what was happening, a tube was being snaked down my trouser worm, yet another lovely experience bestowed upon me by multiple sclerosis, the gift that keeps on taking.


After the catheter was inserted, out of my bladder poured forth at least three times the amount of urine that a human bladder should hold. Seems I had been retaining urine for quite some time, and this might have explained, according to the urologist, the pain emanating from my kidney. One problem with this theory is that, as I noted above, the pain had begun to noticeably dissipate the night before while I was in the ER, before the urine was drained from my bladder. Of course, the urologist stuck to his guns with his theory, as so many doctors are wont to do.


The cavalcade of whimsy that started when the pain first struck on Saturday only continued to gain momentum when the urologist strongly recommended my having a catheter inserted again, this time to stay in place for about a week, in order to "give my bladder a rest ". Of course, this would mean I'd urinate into a bag attached to the catheter for that week, the prospect of which I was none too keen on. I doth protested vociferously, and negotiated him down to 36 hours, a figure neither of us was very happy about. He mentioned the prospect of my perhaps needing a catheter permanently, which started a conversation about quality versus quantity when it comes to life, which I won't go into here but should be fodder of a different kind of blog post.


Suffice it to say, I went home with a tube sticking out of my ukulele, a urine collection bag strapped to my leg. My angelic wife, who has been by my side through this entire twisted ordeal, took along with her a bigger collection bag to be used when I got home, in place of the much smaller leg bag. Yippee!


After he consulted with the urologist, my neurologist called me none too pleased about my unwillingness to be catheterized for the recommended full week, and a patient-doctor tiff ensued. After 14 years, my neuro and I have developed a genuine mutual affection, but this time around neither of us were all that happy with each other. I pointed out that I had been urinating noticeably less ever since my infusion of Rituxan about six weeks ago, which I blamed for my distended bladder. My neuro insisted the Rituxan could have no such effect. Having had extensive experience administering Rituxan, he'd have none of this. Regardless, he strongly urged that I do the catheter thing for more than 36 hours, a suggestion to which I rejected vehemently. Call me Mr. Cranky Pants. 


After we got off the phone and I calmed down a bit, I reflected upon his advice and decided that he was likely correct. No sense playing with fire, and I certainly didn't want a reprise of the horrendous pain I'd experienced, so I spoke to the urologist and agreed that I would keep the catheter in through the weekend.


And what a weekend! Having a tube shoved up your schmeckel for days on end is more fun than a night at the GiggleSnort Motel – not! My dear wife became quite adept at draining urine collection bags and switching between the leg bag and big mama bag, after a few false starts resulting in the dispersal of urine in places it shouldn't be dispersed. Since my right arm and hand are completely paralyzed and useless, and my left, while still functional, is getting increasingly less so, I was unfortunately of limited help with these various processes. I felt about as useful as a condom dispenser in a lesbian bar.


Finally, Monday rolled around and it was off to the urologist to get the catheter removed. Getting the tube yanked out of my tallywhacker, the prospect of which caused considerable anxiety, turned out not to be so terrible – hardly noticeable, in fact. I'll see the urologist again in 10 days, and hopefully between now and then things in the plumbing department will get back to what passes for normal in a multiple sclerosis patient. Over the last few days I've finally begun feeling better, so hopefully I'm in recovery mode.


The urologist informed me that the urine cultures turned out negative, so I didn't have a kidney infection. The CT scans never showed evidence of a kidney stone, and I remain unconvinced that my bloated bladder would result in such an acute pain focused on one specific area of my body. So the cause of my agony remains a mystery. As does the exact nature of my neurologic disease (my MS diagnosis has never been able to be confirmed), as well as the roots of my widespread endocrine dysfunctions, which continues to defy reasonable explanation.


Given the mass of mysteries surrounding my various debilitating medical conditions, I can only come to one logical conclusion: somebody somewhere has a voodoo doll of me and is using it as a pincushion, or maybe as a dog's chew toy. Of one thing I am certain – somebody put the Whammy on me.


In that spirit, the song that has been running through my head nonstop this week, as I lay in bed with a tube sticking out of my stubby cudgel contemplating my slowly spiraling the drain over the last 15 years, has been this one. Written and performed by the one-of-a-kind Screamin’ Jay Hawkins, a man who is reliably reported to have fathered over 60 children, it expresses precisely the sentiment I've been feeling: someone put a spell on me, and not in a good way…





Monday, June 11, 2018

Everybody Must Get Stoned


I was fully planning on writing a new blog post this weekend, filled with actionable MS information, wisdom, humor, pathos, and astonishing literary flourishes. Instead, I was sidelined by the WORST pain I've ever experienced in my life.


Woke up Saturday morning feeling relatively okay, but after a few minutes was hit with a horrendous stabbing pain radiating from the right side of my lower back. The pain was so intense that it pretty much paralyzed all the parts of me that aren't already paralyzed. I was rendered dazed, confused, and writhing in bed, and it took me several minutes to work up the strength to call out for my wife. She did a quick consultation with Dr. Google and came up with a likely culprit: kidney stones.


I soon spoke with a family member who dealt with a kidney stone a few years ago, and she told me that there was really not much to be done other than to rest and wait for the stone to pass.


So, I did just that – rested all day Saturday and Saturday night, and though the pain did start to subside I still felt pretty miserable when I went to sleep late Saturday night.


Woke up Sunday and after a short while was once again hit with a monstrous jolt of pain emanating from the same area in my right lower back. As soon as I could muster the wherewithal, I called my neurologist, as I no longer have a primary care physician. This is because the doctor who had been my PCP for 17 years decided to become a VIP physician, requiring patients to pay $3000 a year just for the privilege of being able to get an appointment with him – please, don't get me started. Turns out the world is filled with vampires, some of them hiding in plain sight.


My neuro told me I should immediately go to the emergency room, which I did just as soon as Karen heroically managed to untangle me from the bedding, get me into some street clothes, and then into my wheelchair.


At the hospital, the ER team did standard blood tests and urinalysis, as well as a CT scan. The blood tests came back relatively normal, the urinalysis turned up traces of blood, and the CT scan showed inflammation in my right kidney, but no kidney stone. I was told that I very likely had recently passed a kidney stone without knowing it, and the stone may have done some damage its way out.


Not sure I entirely buy that explanation since I feel really sick, as if I have an infection. Nevertheless, a recently passed kidney stone is the party line, at least for now.


I did do an infusion of Rituxamab about six weeks ago, so I'm not sure that a standard blood test would actually show the typical signs of infection since my body has been wiped clean of B cells. The doctors in the ER didn't really seem to understand the potential significance of my having taken Rituxan, and appeared to be pretending to know what I was talking about when I told them I was on the drug. Just another example of our modern medical miracle machine showing that in large part it is made up of chicken wire and chewing gum.


I'll be seeing an urologist early this week to try to get the situation clarified and resolved.


Anyway, just wanted to let WK readers know that I'm still among the living, despite my not having put a new essay on the blog in over a month. I have some good ideas for new posts, and also a very long interview I conducted with a naturopathic doctor who works exclusively with MS patients that should prove to be enlightening once I get it transcribed. All of this is unfortunately on hold, however, until I start feeling a bit better. Hope you will bear with me…


Since I associate almost everything that happens in my life with one song or another, here's the song that's been playing on a loop in my head ever since my wife uttered the words "kidney stone"…




Tuesday, June 5, 2018

Remembering Bobby Kennedy

Attorney General Kennedy and Rev. Dr. Martin L...

Image via Wikipedia

(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted seven years ago, in 2011. Given the current ruinously divisive degraded and degrading political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important now than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this essay is as relevant today as it was 50 years ago and should be taken to heart by those of all political stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. Despite assertions otherwise, facts remain facts, lies remain lies, and ultimately the truth will win out. We are in desperate need of our own Bobby Kennedy. For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website – click here)

I am a man with few heroes. 

It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set through their words and deeds. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 50 years ago today. 

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable gossip hungry media. Back then there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been realized. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against social injustice, fashioning himself into a champion for the weak and disenfranchised. 

Robert Kennedy started his political career working in the office of the now justifiably vilified Senator Joseph McCarthy, who at the time was in the midst of his wretched early 1950s anti-Communist witchhunt, a hideous debacle which resulted in the destruction of the reputations and lives of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis. 

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968. 

Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of America one can only imagine that the arc of history might very well have been much more benign than the reality that has ultimately come to pass. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss. 

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and likely unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, no asinine twitter tantrums, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination. 

Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…


Rest in peace, Bobby Kennedy.

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Tuesday, May 22, 2018

(Not) Born This Way– Repost

(I’ve been fighting the creeping cruds for the last couple of weeks and haven’t felt up to composing 
a new essay. so, I’ll offer up a “Best of Wheelchair Kamikaze“. This composition generated a lot of response when it was first posted about two years ago, and I hope you find it worthwhile the second time around. Stay tuned for a new essay, coming just as soon as the cruds recede…)

Later in May I’ll be marking the 13th anniversary of my official diagnosis with Multiple Sclerosis. Believe you me, the date won’t be punctuated by any festivities, but more likely with a shake of the head. Thirteen official years with this motherfracker and the reality of it is still a shock despite my mounting disabilities and the indignities that go with them. At this point my healthy days are becoming a distant memory, so much so that many of the details of my way-back-when life have taken on a dreamlike quality, as if they are no more than the ethereal whisps of a somnolent mind.

But no, indeed there was a time when I was healthy, and yes, I did actually do all of those things that are stored in my memory banks. Thing is, looking at me now, due to the unfortunate developments of the last 13 years nobody could ever guess at the experiences that shaped me. This certainly wasn't true when I was well, when my outward appearance most definitely reflected many of my life's experiences, my likes and dislikes, and, I think, something of the essence of my soul. Though I wasn't a peacock, I did take pride in my appearance, and often wore a rotating selection of the antique wristwatches and jewelry (some of the jewelry dating back to ancient times) that I passionately collected. Yes, I'll admit to a touch of vanity, but mostly my outward appearance was simply a natural extension of the person within.

One of my favorite pastimes is people watching, and part of what makes that activity so endlessly fascinating is imagining the life of each person spied, constructing an off-the-cuff narrative of their past, present and future. Writ large on many folks is an imprint of their lives, of dreams and aspirations filled or failed, of triumphs exulted and disappointments suffered. That sly looking older gent, snap brimmed hat worn at just the right angle and eyes all a twinkle certainly had his adventures, quite likely including a few too impolite to be told in public. Was he CIA or Cosa Nostra, and is there really a difference? That fashionably retro young lady, trying so desperately to come off cooler than a Frigidaire, masking not so long ago awkward teenage years and a mass of present insecurities roiling inside, her wannabe Audrey Hepburn exterior a veneer for the Olive Oil heart pumping within.

Most of us project who we have been and who we want to be through the image of ourselves we construct for the outside world, some more consciously than others but almost all having their tells. Much to my chagrin, though, my current wheelchair bound, physically decrepit state serves as the ultimate unwanted camouflage. Spastic, atrophied limbs and my mechanical means of ambulation paint a picture likely to overwhelm any I might otherwise want to project. When I first got the chair and was less disabled I made it a point to try to be the most fashionable gimp possible, choosing clothes and accoutrement that screamed “personality”. Now, though, forced by the ravages of my illness to wear garments picked far more for practicality than self-expression, my outward appearance speaks primarily of my medical predicament and not of the life that preceded it.

It’s strange how invisible one can feel when sitting in a hulking 350-pound mechanical monster. The simple fact is that most healthy folks don’t spend much time contemplating the person and personality sitting in the wheelchair, preferring to devote their thoughts instead to less morbid topics. Thinking too hard about the person in the wheelchair might provoke some rather unpleasant truths, including the disturbing reality that with a single stroke of bad luck that person in the wheelchair could be them. It’s much easier and less troubling to simply assume that the wheelchair people had just been born that way, or had in some other fashion materialized in their present state fully formed, like a pod person from The Invasion of the Body Snatchers.

Well, for the record, I’d like to state that I was definitely not born this way. This summer it will be eight years since I was forced into my first wheelchair, and about 11 years since I exhibited my first blatantly obvious outward signs of disability. The life I led before MS intruded upon it was varied and colorful, filled with experiences ranging from the ridiculous to the transcendent. And some that were transcendentally ridiculous.

At age 17 I worked for a dirty magazine, at 23 I was the lead singer of a punk rock band, at 30 a creative cog in a large buttoned down multinational corporation (yuck), and at 36 found myself heading up the DVD production department at one of the foremost music/TV/video production facilities in the world. 

I played an important part in the making of over 300 mostly music related DVDs, and have a platinum record on my wall and a listing on IMDb.com to prove it. And even though that all sounds interesting in the telling, I never found much satisfaction in my work life. 

I was a habitual night crawler, carousing past dawn more times than I can remember or count. To this day I’m rarely in bed before 3 AM, and strive to be blissfully ignorant that there are two 10 o’clocks in one day.

I suffered several broken hearts, but also broke a few along the way (sorry for that). I learned that although the faces and circumstances of each heartbreak differ, the heart tends to shatter along the same fault lines every time. And that after each heartbreak, which I neurotically nurtured, I was only as alone as I wanted to be. New romances magically appeared just as soon as I opened myself up to their possibility and stopped pining for loves lost.

I was almost murdered (twice), suffered a detached retina after hitting a really big guy in the fist with my eye, and once unceremoniously projectile vomited at my boss’s table during a raucous office Christmas party. Oops.

I drove fast cars way too fast (how else to drive them?), bet on fast horses that mostly turned out to be not quite fast enough, and fasted on Yom Kippur.

I shot video professionally while flying in vintage war planes, police helicopters, hot-air balloons, and even the Goodyear blimp, twice.

I jumped out of an airplane.

I came face-to-face with a 10 foot bull shark while snorkeling over a reef a few miles out in the Atlantic off the Florida Keys. I wish I could say that I faced the moment with steely resolve, but in plain fact I tried my best to run back to the boat that brought me there, proving once and for all that I am not the son of God and cannot walk on water. This did nothing to ingratiate me to my then girlfriend, left behind in my panicked wake. Please see the note on heartbreaks, above.

I won the lottery (for thousands, not millions), shot a hole-in-one, and came in first in a 500 player online poker tournament.

For a while I swam a mile every day, slicing through the waters in a meditative state stoked by the womb like environment of the pool and the repetitive physicality of the exercise. How I miss that.

I made friends with some very special people, relationships that matured beyond mere friendship to become family. These precious folks are an integral part of who I am and how I view the world. And I owe most of them long overdue phone calls.

I married an angel. 

At times I've been down to my last dime and at others have been flush with cash, and learned that what my grandmother used to tell me about wealth when I was a kid is true: rich or poor, it’s nice to have money.

I could go on, but I’m sure you get the gist. I realize, too, that my becoming disabled has afforded me some extraordinary experiences that I otherwise certainly would’ve missed, and not all of them involve unpleasant medical procedures. Through these pages I have touched and been touched by people from all over the world. My MS “get out of work free” card gave me a reprieve from the working world, and allowed me the freedom to dust off parts of myself that had been left neglected for decades. I’ve made some very special new friends who are in one form or another members of the MS club. I owe most of them phone calls, too.

Despite the fact that I am, of course, still the sum of all of these parts, as my disabilities mount they increasingly dictate the persona the public at large sees when I venture outside my apartment. It’s impossible for them not to, as my wheelchair has no invisibility button and my withered and weakened limbs can’t be camouflaged by even the most snappy pull over shirts and elastic waisted pants. I know I'm not alone in these feelings, as I sense some of the same frustrations in the knowing glances and nods exchanged with other wheelchair users that I pass on the streets of New York. Funny thing is that some of the most interesting people I’ve ever met are fellow wheelchair jockeys, most of them imbued with a quiet wisdom and sense of the absurd accrued by enduring the foibles of our shared tribulations. 

Indeed, most of us in wheelchairs were not born this way, and if that fact makes some members of the healthy world uncomfortable, well, sorry for that but get over it. Although a quick look at me may no longer reveal the kernel of who I am and where I’ve been, I'd be happy to share the lessons learned and laughs picked up along the way with anybody who would care to hear them. I am much more than this faulty and misshapen body; there's still a person in here filled with all the simplicities, complexities and idiosyncratic contradictions I've collected all these years. To find out what lurks within requires but one magic word. Hello.


Writing this essay brought to mind a wonderful song written and recorded by John Prine in 1971 that touches on many of these same themes, though in the context of old age rather than disability. It’s one of the most poignant songs I’ve ever heard…


Monday, April 16, 2018

An Uncomfortable Truth: No $ In Cures, Says Goldman Sachs

In a development more shocking than the capture of a live Bigfoot, a recent Goldman Sachs research report (click here and here) states in black-and-white what many have long suspected: curing diseases is not a viable business model for the companies that develop and manufacture drugs. Instead, drugs that turn terrible diseases into treatable illnesses which are kept under control by the perpetual use of medicines that sustain patients but don’t cure them have become marvels of modern capitalism.

Perhaps unwittingly, the Goldman Sachs report confirms that our current medical research model is more crippled than I am. Over the past three or four decades, the interlocking mantras of “all government is bad government" and "private enterprise is the solution for everything," have led our society to hand the reins of medical research over to for-profit pharmaceutical, medical device, and biotech companies. Most of these companies are publicly traded, meaning their stock is available for trade on the world's stock markets.

The problem with this formula is that publicly traded companies are mandated by law to be beholden to their stockholders, not the end users of their products. In the case of pharmaceutical and medical device companies, these end-users are sick people, many suffering from hideous diseases like multiple sclerosis. In the cold calculus of the free-market, the job of drug company executives is NOT to produce drugs that offer the best result for the patients who take them (like, say, cures). Instead, providing the best outcome for the companies’ stockholders – in the form of ever-increasing profits and ever appreciating stock prices – is the legal responsibility of these executives.

In fact, the CEO of a drug company with an established and successful franchise of MS treatments could very well be engaged in illegal practices if they endorsed their company marketing a cure for the disease, which would destroy their existing tremendously profitable business model. In the parlance of the financial world, that executive would be in breach of his or her fiduciary responsibilities. In the parlance of the rest of the world, that executive would likely be given the heave-ho and could spend a good chunk of time in a Club Fed.

Since finding cures for diseases like MS and cancer have eluded researchers for decades if not centuries, the recent advent of medicines that treat but don't cure have been heralded as modern miracles. The lack of cures has become the accepted status quo, despite the fact that in the days before medical research was dominated by for-profit concerns, dread diseases like polio, smallpox, and tuberculosis were wiped out through the efforts of government and academic researchers. Now, though, with the science of genetic therapies rapidly advancing, the prospect – or, in the eyes of Goldman Sachs, the problem – of curing diseases is growing tremendously, threatening to upend a business model that has become incredibly profitable. To take just one example, medicines that treat but don’t cure multiple sclerosis generated over $25 billion in revenues during the last year alone.

As more and more disease-related genes are mapped and identified, the universe of illnesses that might benefit from gene therapy is expanding exponentially. Multiple sclerosis is one of those diseases, as it seems every few weeks a new set of genes are discovered that play a role in the MS disease process. The ultimate cure for MS may one day lie in altering the genes that initiate the cascade of failures that leads the body to destroy its own tissues. Ultimately, the genetic profile of individual patients may be used to tailor cures unique to their genetic makeup.

In their research report released last week, Goldman Sachs – a company that is a central pillar of our financial system with a reach far beyond Wall Street – concludes that such genetic therapies represent a vital threat to those invested in companies involved in drug and medical device development and manufacturing. In a report entitled "The Genome Revolution", Goldman Sachs analysts ask, "is curing patients a sustainable business model?" While acknowledging the vast potential of genetic treatments, the report states “Such treatments offer a very different outlook with regard to recurring revenue versus chronic therapies. While this proposition carries tremendous value for patients and society, it could represent a challenge for genome medicine developers looking for sustained cash flow." Heaven forbid! The almighty dollar must rule all, patient and societal well-being be damned.

The report goes on to make several recommendations for addressing the looming financial threat of curing rather than treating diseases, including that companies ignore rare diseases whose small patient pools would make any cures prohibitively expensive, and also that they avoid curing infectious diseases because "… curing patients also decreases the number of carriers able to transmit the virus to new patients", which would, of course, be terrible for business. The report cites the example of Gilead Sciences, which developed a cure for hepatitis C several years ago (click here), but has seen its profits plummet as the population of hepatitis C patients shrinks thanks to the success of Gilead's medication. As a result, the company’s stock value has suffered. More proof that no good deed goes unpunished.

Folks, this Goldman Sachs research paper states in black-and-white what to many has been long apparent but difficult to fathom: there is very little incentive for pharmaceutical companies to research and develop cures for diseases when marketing treatments that transform patients into customers for life is an immensely profitable business model. Those of us suffering from terrible conditions like multiple sclerosis must recognize that hoping for a cure from such entities is akin to hoping that the Easter Bunny hops into your local MS clinic and drops off a cure delicately encased in a colorfully decorated egg.

What is the solution to this situation? Well, how about putting a small tax on pharmaceutical company profits, the proceeds of which could be funneled exclusively into publicly funded medical research explicitly targeted at finding the cause and cure of currently intractable diseases. If a tax of 4% were placed on MS medications, which, as stated previously, generated $25 billion in revenues last year, a nifty $1 billion could have gone to fund independent researchers in the search for a cure for the disease. Would it place an undue hardship on MS drug manufacturers if last year’s revenues totaled $24 billion rather than $25 billion? Let’s not forget, pharmaceutical companies are granted extremely long patents on their products and don’t face much in the way of free-market competition. It’s no accident that every MS medication is priced between $60,000-$85,000, despite the fact that some of them have been on the market for more than 20 years.

Yes, I am aware that any talk of increased taxes is anathema to ideologically driven politicians and those who vote for them, but if we are to find our way out of a status quo that sees treating but not curing as perfectly acceptable, some radical changes need to be made. The current state of our medical research model has been corrupted by the siren song of blockbuster drugs, the profits from which are astronomical. As a society, we must reckon with the following question: Are profits more important than patients? Seems to me that in a country where “Life, Liberty, and The Pursuit of Happiness” are held as sacred, the answer should be self-evident. It’s tough to enjoy our inalienable rights while plagued with horrible illness. Will the incessant drive for ever-increasing economic gain dictate the future of medicine, or will we as a society finally stand up and say, “Enough!”

Sunday, March 25, 2018

First Annual Progressive MS Day – Wednesday, March 28, 2018

Okay, all of my fellow progressive MSers, we finally have a day to call our own! This Wednesday, March 28, 2018, will be the first ever Progressive MS Day, a time to draw the world’s attention to this most debilitating form of the scourge that is multiple sclerosis.

As most of you already know, the majority of MSers (approximately 85%) are stricken with the relapsing-remitting form of the disease (RRMS) which is, of course, no picnic itself. Despite the advent of immunosuppressive drugs that effectively reduce relapse rates and the formation of new lesions in relapsing patients – medicines that carry with them laundry lists of serious and potentially fatal side effects – many of these patients may eventually transition to a progressive form of the disease, known as secondary progressive MS (SPMS). This stage of the disease sees patients no longer experiencing relapses and remissions, but instead a slow and steady decline in physical and mental functioning. Though there are currently over a dozen drugs approved to treat RRMS, there is only one approved to treat SPMS.

A minority of MSers (about 10%-15%) start off with progressive disease. This form of the disease is known as primary progressive MS (PPMS) and is considered the most challenging type of MS to treat. Currently, there is only one approved drug for the treatment of PPMS, and its effect on this debilitating monster is relatively modest, slowing down the progression of disability by about 25% in some patients.

Given this backdrop, it’s high time that the public is made aware of the ugly side of MS, the side which doesn’t have patients Dancing with the Stars or climbing Mount Everest. Progressive MS Day will offer our community a chance to draw attention to this particularly daunting form of MS, and by doing so hopefully draw resources towards treating and ultimately conquering it. Several states are expected to officially recognize Progressive MS Day, along with most MS patient advocacy groups. It is expected that this first Annual Progressive MS Day will grow in scope in years to come, but this year the event will be staged primarily in the virtual world of the Internet. Baby steps, folks, for those of us who can take any steps at all.

Progressive MS Day has been kick-started by the drug company Genentech, which manufactures and markets Ocrevus, the only drug currently approved by the FDA for the treatment of progressive MS. Yes, it’s not like me to do any promotion on behalf of the drug companies, and I have written several lengthy articles on Ocrevus and the issues surrounding it (click here and here). But, just like politics, crippling diseases can make for strange bedfellows, and the idea of a Progressive MS Day seems pretty good to me regardless of where it was conceived. As patients and their loved ones struggling with this illness, let’s take hold of this day and make it our own.

So, what can you do to help spread the word? Well, you can start by using the fancy-schmancy Progressive MS Day Facebook frame on your Facebook profile picture. I must admit, being an avowed Facebook hater, I had no idea what a Facebook frame was, but I just managed to add it to my profile pic and I think it’s quite nifty indeed. Please follow the instructions on the below graphic to add the frame to your own profile pic, and it’ll be like we have all revealed ourselves to be members of one of the least influential secret societies on the planet.


In addition, please use the hashtag #ProgressiveMSDay on your social media posts regarding the event. That way, nefarious groups like the Russian intelligence services and Cambridge Analytica will be able to forever tag you as a person with a crippling illness.

Just to add my own Wheelchair Kamikaze twist to the day, I am requiring, with absolutely no exceptions, that everybody who reads this post compose a Progressive MS haiku and post it in the comments section of this blog or on my Facebook page, if that’s how you reached this blog post. If you cheat and don’t compose a haiku, I swear I will hunt you down, sneak up on you, and when you least expect it shout “Boogie Boogie Boogie” at you. Believe me, writing a Progressive MS Haiku is much more pleasant than having a surprise “Boogie Boogie Boogie” shouted at you. If you don’t believe me, just click on the video below:





For those who have forgotten the rules of writing a haiku, let me refresh your memory. Haiku is a Japanese form of poetry, composed of only three lines. The first line must be five syllables, the second seven syllables, and the final third line 5 syllables again. Easy peasy haiku squeezy. As luck would have it, “Progressive MS” is five syllables and therefore makes for an easy first or third line.

To get you started, here are a few Progressive MS haikus I composed myself. Please use the hashtag #ProgressiveMSHaiku if you post your own poetic creations on Facebook, Instagram, or Twitter.

Haiku #1
Progressive MS
Stole everything but my soul
You mother f*cker


Haiku #2
Progressive MS
Enough with the half-assed drugs
I want a damned cure


Haiku #3
Progressive MS
Stick my head in a blender
And please press purée


Haiku #4
Stripped of all pretense
I discovered my essence
Progressive MS

Right then, I’m sure you get the idea. Now let’s have at it…

Sunday, March 11, 2018

15 Years a Progressive MSer

You think back and it seems like a million years ago, or yesterday. The first Sunday of March 2003, an unusually cold day for that time of year. Despite the winter chill, you decide to take your beloved Labrador Retriever, Stella, for a long walk along the Hudson. After strolling about 2 miles on the paved path running next to the river, you turn homeward. You don’t return the same way you came but instead choose to take the city streets back to your wife, waiting in your apartment.

On the way home, you slowly notice that your right knee is buckling backward, causing a peculiar limp. It’s not painful as if with a sprain or bruise, but instead, a weird hitch that seems caused by weakness within the knee itself. As you walk further the limp becomes more pronounced, and the inside of your head starts feeling kind of fuzzy. It’s all very strange and unsettling. You know in your gut this isn't normal, that something fundamental has changed.

About two months later, after a disconcerting blur of doctor’s appointments and medical tests, you’re given a preliminary diagnosis of multiple sclerosis. It’s one week before your first wedding anniversary. You’re sad and disoriented and angry and frightened, very frightened. Though you’re still mostly ignorant about the disease itself, you instinctively know you've reached an unhappy line of demarcation. There will now be a time before the limp and after. Little do you suspect how stark a marker this will become, a deep impenetrable moat separating two entirely different lives, both lived in one lifetime.

Now, 15 years later, your old healthy life is receding faster and faster into the haze, like a dream remembered crisply upon awakening but lost to the ether by noon. After the limp appeared the disease hit fast and hard. No relapses and remissions for you, only progressing disability, a creeping paralysis. Less than four years after that cold day in March, the beast forced you to "retire" at the ripe old age of 43, just when your career was poised to go parabolic. A year later MS planted your ass firmly in a wheelchair. Fast forward 10 years to the present and your right side is dead weight. Your declining left side insists on following the same horrid script written by your right, like a bad sequel to a terrible movie. Somehow, on most days you outwit despair, focusing on whatever glimmers of hope the gaping abyss before you can’t hide. On other days the darkness wins out.

You remember that years before the limp you'd experienced a series of odd symptoms that defied explanation. In 1997 the doctors thought you might have a rare form of lupus, but the medical minds could never arrive at a conclusion, and during the five or six relatively quiet years after you pushed any concerns aside. On the whole, that would make it 21 years since things started going haywire. Your disease could be getting its bachelor’s degree by now. A BS in MS, or, more appropriately, a BS in BS. As an adult, you've been sick longer than you've been healthy. The gods must be crazy, and an indifferent universe could not care less.

You ponder all the things these wearisome years have taught you, from nuggets of wisdom to knowledge you’d rather not possess. You’d have been perfectly happy to live out your days not knowing that for some reason you quickly fall asleep in the noisy, claustrophobic confines of MRI machines, that you’d rather have a spinal tap than dental work, and that you have an innate ability to grasp complicated medical concepts and translate them into plain English. As hidden talents go, you have been fine with leaving that one undiscovered.

Then again, you always had a knack for cutting through the bullshit, and the reality is that most medical jargon exists primarily to confuse the public and hide the fact that large parts of the purportedly gleaming modern medical miracle machine are in reality constructed of chewing gum and chicken wire. You would relish being happily unaware of the fact that for some physicians medicine is indeed a calling, but for many others it is primarily a business. Just like any other job, some are very good at practicing medicine, but others just plain suck. What do you call somebody who graduates from medical school with a C- average? A doctor.

All the downtime that comes with being a cripple has provided you ample opportunity to dissect your long-lost healthy life and graced you with perspectives you likely would have otherwise never gleaned. You remember with deep regret all of the healthy time wasted on the small stuff, and you now see with crystal clarity that almost all of it was small stuff. If you could only have back half of the sleepless nights and anxiety-filled days vainly spent lamenting lost loves and missed opportunities. In retrospect, you see that new romances and promising circumstances inevitably came your way just as soon as you reluctantly let go of your negativity and allowed room for new people, places, and things. Our emotions are born of us, not we of them, and just as you now most often choose hope over despair, you could then have decided to seek contentment rather than wallow in self-imposed neurotic torment. Over the long run, most people are dealt an equal number of good and bad hands; it’s the way you choose to play them that determine the winners and losers. But just as youth is wasted on the young, health is wasted on the healthy.

You think of all the incredible souls you’ve met since your diagnosis, other MSers coping with the disease with their own mixture of poise and grit in the face of mounting indignities and physical insults. They have inspired you, commiserated with you, laughed and cried with you. You rue the toll you’ve seen the monster take on so many. You grieve for those who gave it their all but eventually succumbed. You remember each of them with perpetual sadness at their passing and mounting anger that more has not been done to put an end to this scourge. Treating but not curing is a great business model, but far too many human beings are left withering on the vine as the MS industry seems quite content with this paradigm, it's coffers overflowing.

The ripple effect of the disease is insidious, and you feel guilt at the impact your illness has had on your friends and loved ones. You are keenly aware of the palpable emotional pain felt by your old mom and dad when they see or hear about your ever compounding struggles, of the hidden disappointments experienced by your incredibly loyal wife who has watched her own dreams of a future filled with romance and adventure pilfered and plundered, of the unreturned emails and phone calls from friends left wondering why you choose to remain out of touch even though you hardly leave your apartment. You have no real answers for them, except that on some basic level you now understand why gravely wounded animals retreat into the brush to meet their fates alone.

Most 15 year anniversaries warrant some sort of celebration, but you don’t feel much like celebrating this one. You are grateful to still be here and to retain the functionality to write this essay, but having been struck with this disease is something you will never, ever get used to. Each day you awake to the shock that your dreams are not reality and your reality is not some demented dream. In instants without distraction, you wonder how much more of this you can take and even how much more of this you want to take? 

You somehow find ways to occupy yourself despite a growing alienation from the healthy world that surrounds you. You fight the envy you feel for those who walk and jog and gesticulate, utterly oblivious to their incredible good fortune at simply being able to do so. You listen to those tied in knots by troubles that you now realize are mere fripperies, and fight the urge to scream that you’d swap their plight for yours in half a heartbeat. You are not proud of these feelings, but there they are.

Most of all, you simply persevere. You try to make sense of it all, to tease some meaning from these last 15 years, to convince yourself that there is some method to this madness. You wonder if some long-ago actions taken or not taken, or decisions made or not made, might have led you down a path free from MS. You mourn what might have been, what almost was. You dig for nuggets of hope and reasons to believe, even if that means mining through vast mounds of existential detritus. 

Time and time again you ask yourself and the universe, “what’s the point?”, until you finally realize that the real question is “what’s the point of asking what’s the point?” You decide that if there are any answers, they are beyond the scope of your comprehension, and then you turn on the latest episode of The Walking Dead and start asking the really important questions, like how in the world you would charge your electric wheelchair during a zombie apocalypse? And, if you were to become a zombie, would you suddenly be able to walk? Or would you be one of The Rolling Dead?

Priorities, friends, priorities…

Here’s one of my favorite songs by the great American songwriter John Prine, the lyrics of which pretty much sum it all up for so many, sick and healthy alike. BTW, an “Angel from Montgomery” is what death row inmates used to call a governor’s stay of execution in the state of Alabama…