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…

The Hunger Games: Starved To Life

In keeping with my last post, I figured I'd give the title of this post a little cinematic touch.

Today (Saturday, June 24) I'm starting another round of the Fasting Mimicking Diet that I did last month. For those who missed  last month’s hoopla, I wrote posts recounting each of the five days of the diet, starting with a comprehensive explanation of how’s and why’s of the plan which you can read by (clicking here).

I’ll be using the same prefab diet marketed by Prolon (click here). A few people asked if I’m being sponsored by Prolon, and I promise you, I am not. I understand that the price of the diet kit is prohibitive for a lot of people, and I plan on getting in touch with the company and seeing if we can work out some kind of deal to make the kits more affordable for people with MS who want to try the diet but find the price too steep. Seems like it would make for good publicity for the company and be of benefit to many patients, a classic win-win situation. Meant to do that earlier this month, but, as usual, the days somehow got away from me.

Just a quick recap of what the diet entails: this is a strict reduced calorie diet, done in the hope (expectation?) that forcing the body into a fasting state will allow it to recalibrate some of the out of whack processes seen in diseases like MS, reduce inflammation, and jumpstart the body’s own stem cells to do some regeneration of damaged tissues. On day one of the diet consumption is restricted to 1150 calories. On days 2-5, this is cut further to 800 calories. The diet consists of prepackaged high nutrient soups, protein bars, kale crackers, olives, and a glycerol based energy drink. Other liquid intake is restricted to herbal teas and water. All of the food provided is vegetable-based.

Last time around I found getting through the five days surprisingly easy, and instead of feeling weak at the end of the diet, as I expected, I actually felt quite energized. So, this time around I’m going to take an even more draconian approach and try to extend the diet by two days, consuming only the energy drink, water, and herbal tea on days six and seven. I am doing this under medical supervision, and, rest assured, if I find that things aren’t going well during those extra two days, I’ll pull the ripcord and eat a fruit salad. But desperate times call for desperate measures, and my Creeping Paralysis isn’t showing any signs of relenting.

I was inspired to extend the diet after reading a 2012 article from Harper's, which recounts the long history of fasting for medicinal purposes and tells the tale of the author’s own successful 19 day fast. Incredible stuff. You can read the article by (clicking here). I plan on engaging in at least one more round of the diet after this month, probably more. My naturopath said she’s seen patients start to respond after the second round. Here’s to hoping. I didn't see any additional benefit from the first round other than some lost weight (5 pounds) and a temporary increase in energy levels, but for whatever reason I have found the idea of eating red meat absolutely revolting since doing the diet last month. Go figure.

For those foodies out there, I chose as my last meal before starting this month’s diet a very yummy Thai dish, crispy duck in red curry sauce with lots of pineapple, lychee nuts, and veggies. One of the great things about living in NYC is that you can get pretty much any type of cuisine delivered right to your door, and the aforementioned deliciousness arrived about 25 minutes after we placed the order online. The wonders of modern technology.

I’ll not recount every day of this month’s diet as I did last month, but I'll check in again when this cycle is over. Hopefully, I’ll make it through the entire seven days.

Here’s mud in your eye…

MULTIPLE SCLEROSIS SUCKS!

Allow me to apologize in advance for the contents of this essay. Quite simply, I’m fed up with Multiple Sclerosis and everything that has to do with Multiple Sclerosis. Those expecting to find any form of eloquence, wisdom, inspiration, or other redeeming qualities in these words will probably be sorely disappointed. Like a bulimic who just polished off a giant platter of lasagna, I’m feeling the need to purge and I have a hunch the results won’t be pretty. What follows promises to be more of a free-form rant than well-constructed discourse. I can’t guarantee any kind of narrative flow or grammatical cohesion, much less literary flourish or clever turn of phrase. No, instead I’m just gonna let it rip, an unadulterated regurgitation of everything about MS that’s been stuck in my craw these last few months. This may not be for the faint of heart, as I just might wander into some very uncomfortable territory. Okay, you’ve been warned; now’s the time to either buckle up or head for the exits.

MULTIPLE SCLEROSIS SUCKS!!! I hate this fracking disease. I hate what it’s doing to me, I hate what it’s doing to my MS friends, I hate what it’s doing to those who love or even barely put up with me. I hate the creeping paralysis, I hate the spasticity, I hate the pain, I hate the spasms, and I hate the unrelenting, soul crushing march of constant progression. I hate the slow, systematic dismantling of the life I used to know, I hate the steady erosion of everything I once thought of as “normal”, I hate the constant flow of indignities large and small handed out by the disease. I hate the word “multiple”, and I hate the word “sclerosis”.

I’m sick of being sick, and I’m sick of being sick of being sick. I’m tired of being tired, and I’m tired of being tired of being tired. I’m aghast at the fact that the balance between body parts that work and body parts that don’t work is starting to tip heavily in the favor of “don’t work”, like a sinking ship rearing up as it gets ready to make its fateful plunge. The list of things I can’t do are starting to outnumber the list of things I can do, despite the constant physical and mental adjustments and gyrations that I make trying to contort my life to fit within the ever constricting boundaries imposed by this hellacious disease. I find it impossible to ever get used to having this curse; at least three times a day I find myself shocked at my predicament, barely able to fathom that this is actually my life.

As of this writing I can barely dress myself, can’t cut my own food, can take but one or two hideously painful and treacherous steps. Horrifyingly, these steps are accompanied by a gruesome symphony of crunching and cracking sounds as my hip bones perpetually deteriorate, gut wrenching noises so loud that they can be heard across a large room, all courtesy a tortuously painful degenerative bone condition that has attacked my hips and shoulders that was brought on by IV steroids originally intended to help curb this monster. I'm only able to sleep in one and a half or two-hour spurts because of the intense pain in my hips and shoulders, and on most days I barely have the stamina to spend more than three or four hours at a time out of bed. My right arm is emaciated and most often bent at the elbow due to spasticity, my right leg as weak as a noodle. The left side that I've come so much to depend on is well on its way to failing, the thought of which bores a hole through my very being. And then there are the “bowel and bladder issues” that I share with so many other MSers. Such polite terminology for the fact that we can barely crap and can’t stop peeing. And despite this litany of dysfunction, I know that I’m still one of the lucky ones, as so many with this scourge are in far worse shape than I.

I’m fed up with well-meaning folks uttering some of the stupidest things I’ve ever heard in an attempt to make themselves and me feel better. Upon learning of just why it is that the right side of my body is a shriveled mess and my ass is stuck in a wheelchair, one woman cheerily informed me that her best friend’s husband is completely bedridden due to Progressive Multiple Sclerosis, but that he is just about the happiest person she knows. I just sat there smiling and nodding my head, while on the inside wishing that a rogue chimpanzee would suddenly materialize and eat her face. Her best friend’s bedridden husband is just about the happiest person she knows? A man is likely totally paralyzed, completely incontinent, and probably has to use a feeding tube for nourishment? And this poor soul is just about the happiest person she knows? Who are the rest of her friends, professional mourners? Remind me never to accept an invitation to a dinner party at her place.

I’m angry that the most insidious and destructive form of the disease, Progressive Multiple Sclerosis, the form I suffer from, is kept hidden from public view like a Victorian era mentally deficient child kept locked in an attic. Courtesy the mainstream media and the Multiple Sclerosis Societies, the public never sees the ravaged bodies and mangled lives of people hit hardest by the disease. Instead, the face of MS belongs to celebrities and those patients left mostly unscathed by the illness. There’s even a TV commercial for an MS drug, Tecfidera, that portrays the disease as quite literally something of a carnival. Funny how those celebrities with MS whose disease takes a turn for the worse fall from public view, isn’t it? Where are you, Terry Garr?

Progressive Multiple Sclerosis has made me envious and prone to jealousy, not only of healthy people but even of people with other illnesses. I’ll confess that this even includes people suffering from the relapsing remitting form of the disease, even though I know that RRMS can be its own particular form of hell and can eventually lead to Progressive MS. But just the idea of a remission, a break from the never ending grind of watching myself slowly disappear seems absolutely heavenly. At this point I think I’d give up all the remaining years of my life for just a week of normalcy. Hell, maybe even just an hour. Sixty minutes to go for a walk, to run and jump and dance and button my shirt and tie my shoe and hug my wife and – gasp – drive a car! Yeah, sign me up. That would be one heck of an hour.

Along those same lines, here’s an even more disturbing confession. In ruminating through mental lists of diseases that might be worse than Progressive MS (leprosy, for instance), I sometimes find myself thinking that cancer would be preferable to this creeping paralysis. I know, heresy. But as undeniably horrible as is cancer, at least it’s a disease that ultimately and in relatively short order comes to some sort of conclusion. Yes, I’m fully aware that the disease puts its victims through living hell, and that cancer treatments often seem worse than the disease itself, but at least there are treatments. And at the end of those treatments patients either beat the disease and become survivors who can then begin to reassemble the shards of their life, or they die. Progressive MS doesn’t have the good manners to finish off its victims, instead leaving its least fortunate sufferers consigned to live out their years as fully conscious brains trapped inside prisons of completely useless flesh and bone. The stuff of horror movies, a fate far worse than death as far as I’m concerned. Progressive MS has exorcised me of any fear of death. In fact, given the aforementioned almost unthinkable but quite possible outcome, on many days I’m far more afraid of living than dying.

I'm aware that to many the above words may seem shocking and wrongheaded, but there’s a reason that MS was second only to cancer among the ills suffered by the patients that the infamous Dr. Kevorkian helped end their lives. Okay, hell, now that I’ve stuck my toe into these murky waters I might as well dive all the way in and speak about what goes largely unspoken, at least to those outside of the Progressive MS club. Any number of studies suggest that suicide be listed among the consequences of Multiple Sclerosis, since so many late stage MSers decide to take matters into their own hands. In my many conversations with other people with Progressive MS, I’ve found that most have formulated some sort of escape plan, some in only vague terms but others down to the last detail.

Anybody who would condemn folks for having such thoughts need to keenly consider the gaping abyss people with advancing Progressive MS stare into on a daily basis as their thus far untreatable disease drags them ever forward towards the dark at the end of the tunnel. The relief expressed at finally being able to give voice to such taboo thoughts is just about universal among those I’ve communicated with, and is cathartic in its own right. Almost never shared with outsiders, most of the people who have related their thoughts and plans with me find them not self-defeating but rather self-empowering, bracing them to suck it up and fight on secure in the knowledge that if the fight becomes just too brutal and the climb to steep they’ve given themselves permission to call it a life. And in that there is no shame.

Let me assure all concerned that I’m not suicidal. I’m too damned angry to be suicidal. I’ve so far taken all of the wallops that this disease has meted out and found ways to fight back, and though I’m afraid I’ve not managed to land many blows on my disease itself, I take comfort in the knowledge that I may have in some tiny way helped a few of my fellow travelers on this torturous path to better navigate it by sharing the load even as I unburden myself on these pages. One of my oldest friends long ago described me as the most optimistic pessimist he’d ever met. I guess it’s this odd emotional mix that helps keep me going, half expecting that this hair-raising downward trajectory that has me in its grip will ultimately turn out to be a ski jump, and in the end the momentum gathered during this freefall will be transformed into escape velocity, allowing me to soar higher than I ever imagined.

Yeah, wishful thinking perhaps, but on the day of my diagnosis I vowed that if this disease was going to bring me down I was going to go down with all guns blazing, fists bloodied and mouth spewing venom. And should this descent turn out not to be the launchpad of my fantasies, if I ever do decide to pull the ripcord, let that act not be viewed as defeat but rather a final kick to the nuts of the monster. Stay strong, my friends; together we may not beat this horror, but we’ll damn well keep on trying.

Creeping Paralysis

Back before the words Multiple Sclerosis entered the general lexicon, the disease, especially in its progressive forms, was commonly called Creeping Paralysis. A quick Internet search through the archives of the New York Times reveals the term being used on quite a few occasions dating back to the 1870s (when the archived materials begin), most often and quite disconcertingly within the text of an obituary. A typical example is the 1886 obit of a Mr. Benjamin Moran, an American diplomat stationed in London who was apparently quite the bon vivant, a “great society haunter” who was “smart, lively, and amusing” (click here to download a PDF of the obituary). As described in Mr. Moran’s written memorial, “For the last few years he was a dreadful sufferer of Creeping Paralysis, which rendered him completely helpless…”. Sigh.

Of course, we can’t be sure that Benjamin Moran suffered from Multiple Sclerosis, as Creeping Paralysis is an apt label for any number of similar maladies, such as ALS (Lou Gehrig’s disease), or advanced spinal stenosis. Still, Creeping Paralysis is a terrific descriptor of the effects of Progressive MS, so much so that I’ve often used the phrase here on these pages, and I’ve considered wielding it as an answer when people wonder out loud just why my backside is stuck in a wheelchair. “Creeping Paralysis” would certainly quench their curiosity more effectively, I would think, than the clunky and hard to decipher answer that I currently employ, “Progressive Multiple Sclerosis”. There is much confusion about just what the hell Progressive Multiple Sclerosis is, even among people with Multiple Sclerosis. Progressive Multiple Sclerosis sounds like some kind of politically left leaning version of the disease, whereby Creeping Paralysis sums up the disease and its perils in two easy to understand words, very clear and concise. “I have Creeping Paralysis”. Conversation over.

Unlike Relapsing Remitting MS, whose torments come in the form of acute attacks that eventually recede, sometimes leaving residual symptoms in their wake, Progressive MS is the gift that keeps on giving, inflicting a slow, steady decline in function leading to ever increasing disability over time. In other words, Creeping Paralysis. Mine first crept up in 2003 as a slight buckling of my right knee that only surfaced after I had walked several miles. I’d experienced any number of weird symptoms for years before, but it was the knee that finally sent me to the doctor. Over the next weeks and months, that initial problem spread to ever-increasing weakness invading my entire right side, insidiously creeping through my right leg, arm, and hand. Three years post diagnosis I needed an ankle brace to keep my right foot from dragging along the ground when I walked, year four saw me using a cane, and in 2008, five years after I’d been slapped with the MS label, my Creeping Paralysis had done enough damage to insist that I use a mechanical throne for ambulation.

Creeping Paralysis treats each of those it abuses differently. I know some folks who have had the disease for decades and are still walking, while others find themselves bedridden within 10 years, sometimes sooner. Generally, the disease treats women more gently than men, although, unlike Relapsing Remitting MS, which victimizes women far more often than men, Progressive MS attacks men and women in equal numbers. While there are currently about a dozen approved treatments (however imperfect they may be) that can help keep the worst ravages of Relapsing Remitting MS at bay, at present there are no treatments that have proven to be effective in even slowing down Progressive MS for the vast majority of the people it attacks.

During my first five years with the disease, the paralysis I experienced felt less like it was creeping and more like it was blitzing through my body like the Nazi armies crashing through Belgium on their way to overtaking a completely underprepared, overwhelmed, and horrified France. Five years may sound like a long time, but when those years see you diminished from fully functional to wheelchair reliant and from working to “on disability” they seem like the blink of an eye.

For many years my Creeping Paralysis was confined almost exclusively to my right side, leaving my left largely untouched, allowing me the hope that this would continue to remain the case and that I’d retain a fully functional left arm and leg, a situation I wasn’t happy about but with which I could make do. ‘Twas not to be, however, as whatever obstacles had kept the creeping temporarily restrained to one hemisphere of my body fell by the wayside, and for the last several years the paralysis has assaulted my right side as well, increasingly taking hold. Despite all efforts – and the list of those efforts is incredibly long and varied – my Creeping Paralysis has yet to meet its Waterloo (yeah, yeah, I know I’m mixing up my military metaphors, so sue me).

Increasingly, I’m finding that Creeping Paralysis is impacting not only my body, but my mind and spirit as well. As the disease has become more and more entrenched, and my body less and less able, I suppose it’s inevitable that the condition takes a psychological toll. I’ve learned that paralysis can extend beyond the physical realm. The bodily restrictions imposed by the disease are increasingly accompanied by a psychological reticence to test the boundaries defined by those restrictions; it’s far easier and much less disheartening to curtail activities that once gave me pleasure rather than find out for sure that I can no longer do them. Thus my old hobbies of shooting videos and taking photos from a camera mounted on my wheelchair have fallen by the wayside, my camera equipment gathering dust for the last 18 months or so, it too victimized by my Creeping Paralysis. The ever less dexterous fingers on my one working hand can’t properly control my camera and lenses, and my last attempts at photography proved to be nothing but exercises in frustration.

When simply getting dressed pushes the limits of what is physically possible, the prospect of committing to social activities becomes daunting. Healthy folks seem to have a hard time understanding this. After all, just a few years ago I was out in my wheelchair meeting them for lunch on a regular basis. Thus, despite my best intentions, Creeping Paralysis has frozen not only some of my body parts but some of my relationships as well. I can’t blame friends and family for drifting away in the wake of unreturned phone calls and unanswered emails, but I try not to blame myself, either. In addition to Creeping Paralysis, I have also to deal with widespread endocrine dysfunction and a hideously painful degenerative bone condition, and at times even when there is a willingness to interact, the effort required for lively conversation or the composition of a lucid note can be simply too much to muster. Creeping Paralysis seems to rejoice in imposing limitations on all aspects of life.

There’s a fine line between capitulating to the disease and adjusting to its ever-changing realities. I have found the that less I am able to do the less I am interested in doing. Being out and about in the healthy world, among all of the obliviously fortunate people whose limbs perform seemingly miraculous feats without any apparent effort – like walking or using a knife and fork – can offer much-needed distraction, but can also place a laserlike focus on all that I’ve lost, almost mocking me for those losses. Even watching television can become a seriocomic affair, as commercial after commercial advertises products that are no longer of any use to me, hawking them to a population of which I am no longer part. Cars, exercise machines, the latest electronic wonders, items that in some long-ago life might’ve piqued my intense interest now serve only to illuminate the ugly metamorphosis I'm experiencing courtesy Creeping Paralysis.

Despite the at times dour tenor of this essay, please know that through it all I still laugh far more than I cry, still strive to find nuggets of joy wherever I can, even if I have to dig through piles of manure to get at them. I’m fighting the many components of my disease as hard if not harder than ever. Earlier today my wife and I chuckled as we marveled over the fact that I’m taking medicines in pretty much every way they can be taken. I’m inhaling aerosolized antifungal medication to treat a potential mold infection in my sinuses; getting injections of testosterone as part of my fight against my endocrine issues, ingesting antimicrobial drops and liquid probiotic cocktails in an effort to rebalance my gut Microbiome, getting an intravenous treatment called plasmapheresis in an attempt to beat back the Creeping Paralysis, and taking pills by the dozen. We concluded that the only mode of drug delivery I’ve missed is anal suppository. I’ll have to get hard at work on that one. Not.

So there you have it, Creeping Paralysis and my experiences with it. Hopefully, with an assist from modern medicine, I’ll ultimately fare better with the disease than the unfortunate Mr. Benjamin Moran, whose obituary I highlighted earlier. Somehow, calling my illness Creeping Paralysis rather than its more modern and scientific name gives me some strange sense of satisfaction. No beating around the bush with a name like Creeping Paralysis, it presents the illness in all its stark reality. Using a term as impenetrable as Progressive Multiple Sclerosis in some ways insulates those involved from confronting directly the potential horrors of the disease, a trick at which modern medical nomenclature excels. I’d rather stare this bastard right in the eyes and call it what it is: Creeping Paralysis, a name as ugly as the disease itself.



Oh, if anybody can shed any light on "the culture of the jumping cat" that is mentioned in Benjamin Moran's obituary, I would be forever grateful. Again, you can download the obituary by (clicking here). I'd just love to know what was meant in the 1880s by "the culture of the jumping cat", but can find no reference to it anyplace else. Please leave any ideas in the comments section of this post.

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A Call to the Cosmic Complaint Department…

R

Hello…?

Mr. Universe…?

Mrs. Universe…?

Sir…?

Ma’am…?

Anybody…?

Well, if you’re listening, I think there’s been a terrible mistake. You see, I’ve got this, well, this creeping paralysis, and it just won’t stop creeping… and creeping… and creeping. It’s creeping so much that it’s creeping me out, and I’m afraid it’s about to swallow me. So, before things get completely out of hand, I’d like to lodge a formal complaint and see if I can get some kind of a cosmic credit, or even maybe a do-over. You know, like back in the schoolyard, when in the middle of a game something would go wrong and all the kids would agree to just wipe the slate clean, and make believe that whatever happened never happened. Do you think we could work something out along those lines? A do-over? Just one?

The department store Nordstrom is famous for taking back almost any item, even if it’s been used, and I’m thinking I must be due some kind of refund or other form of galactic recompense. I mean, if Nordstrom can do it, certainly you, a universe filled with multiple dimensions and all kinds of crazy quarks and pulsars and quasars, must have some way of correcting what has obviously been a royal screwup. No, I don’t have a receipt, but I do have a birth certificate and an expired driver’s license, will that do?

Because, really, I’m pretty sure this isn’t the way things were meant to play out. I’m fairly certain that somewhere along the line the story of my life has gone way off script, like in one of those old movies where somebody accidentally picks up the wrong suitcase at an airport or train station and their fates get switched with the person who picked up their suitcase, and all sorts of wackiness then ensues. I’m positive that somehow my cosmic suitcase got switched, and I’m not at all happy with the ensuing wackiness.

When I was younger, I had a preview reel of what my life would be like running through my head, and I’m certain that literally feeling sick and tired all of the time while becoming ever increasingly paralyzed wasn’t in any of the selected scenes playing on an endless loop in my noggin. I was going to be a famous writer, rock star, or movie director, and my life was supposed to be filled with all kinds of exciting escapades and adventures, with just enough drama thrown in to make things interesting. I wasn't expecting a fairytale, but the screen in my head wasn’t showing a disaster flick, either.

Yes, yes, I know, all of that might seem ridiculous and downright juvenile, but I never claimed to be the paragon of maturity. After all, you’re only young once but you can be immature forever, right? And yeah, I’m well aware that almost no one’s youthful dreams ever really come true, but I never ever imagined that dreams could so easily turn into nightmares. Looking back I’ll admit that I didn’t always make the best choices, and probably made more than my share of mistakes, but surely I never did anything bad enough to deserve this, did I?

I mean, I just watched a television interview with the serial killer Son of Sam, who slaughtered six people and terrorized New York City for months on end back when I was a teenager, and he looked healthy as a horse sitting there in prison. Doesn’t he deserve a nice dose of creeping paralysis? Or how about the monsters who rape or hurt children, or plot horrific terrorist attacks that kill dozens or hundreds of people? I see them on the news all the time, looking all hale and hearty. How about a liberal sprinkling of progressive multiple sclerosis for them?

Believe me, you don’t have to tell me that I’m no saint, but even with all of my missteps and blunders and mistakes, the person I hurt worst of all most often seems to have been myself. Being sick has given me all kinds of time to look back and analyze my past, and at this point I think my regrets have regrets. I’d love to be able to use some of the insights all of this introspection has given me to live a more worthy life and forge a future free of the dunderheaded moves of my past, but the way things are heading if I think too much about my future I might just poop in my pants. As a matter of fact, without being granted a cosmic refund or credit or do-over, pooping in my pants could very well be a large part of my future. Gross. And things could very well only go downhill from there.

I’ll admit that getting sick hasn’t been all bad, and in some ways it’s given me freedoms that I probably otherwise never would have realized. I was able to stop working and start writing, which is probably what I should have been doing all along. Before this creeping paralysis crept so far I was able to take lots of photos and videos from my wheelchair, fulfilling creative impulses I’d long dreamt of indulging (without the wheelchair part), but I’m afraid those days are probably over. I sure have learned a heckuva lot and met all kinds of interesting people, many of them fellow patients, most of whom, FYI, also don’t deserve the crap they’ve been slapped with. It would be nice, Mr. or Mrs. Cosmos, if you could find a way to cut them more than a little slack, too. I’ve discovered emotional and physical resources within myself that I didn’t know existed, which has been kind of cool. But now things are getting pretty dicey, and I think I’ve squeezed all the positives out of this experience that there are to be squeezed. In all honesty, I’m getting scared. Really, really scared.

So what do you say? Can you give a brother a break? How about this: forget about making me better, just stop me from getting any worse, okay? Certainly not the ideal situation from my perspective, but I’ll take it. How’s that for a compromise? See, I’m reasonable, not like all those asshats in Washington. Can’t we work something out? A little give-and-take? I’m not sure I have all that much left to give, but I’m open to suggestions. I’ll be right here waiting for your answer, just a pimple on a flea’s ass in this ever-expanding universe, but I trust that you’ll know where to find me.

Hello…?

Hello…?

Suspended

A reliable staple of science fiction space adventures is the concept of “suspended animation”, whereby astronauts traveling to far off galaxies are put into a kind of hibernation during which they don’t age or otherwise feel the effects of their long, perilous journeys. Safe in their suspended animation pods, these fictional voyagers are awakened upon reaching their destination, blissfully unaware of the months, years, or decades that have passed since they left their home planet. For all they know, while they were in suspension the world they left may have changed radically, or may no longer even exist. Separated from their previous lives by time and distance, the reanimated travelers now inhabit a new reality, for better or worse (in most pieces of science fiction, it’s usually for worse).

I’ve come to realize that in some ways my illness has had a similar effect on me. As my creeping paralysis has progressed, leaving me less and less able to take part in the ordered chaos of the world at large, I find myself increasingly alienated from the life I once knew, my space in the existence I used to occupy now almost totally erased. I’m still here, of course, part of the world but also apart from it, more spectator of than participant in the game of life. The never ceasing whirl of activity outside of my metaphorical and physical windows continues on, but the threads that once tied me to the self-perpetuating clamor of everyday life have largely been cut, putting me in a sort of conscious state of suspended animation. The gears of the world grind on, but more and more, they grind on without me.

The most tangible examples of this are the changes that have come to the industry in which I once earned my living. I spent 20 years building a career in TV and video production, which culminated in my heading up the DVD Production Department of a huge multinational music/entertainment conglomerate. My group was responsible for the programming and mastering of hundreds of discs, some of which sold hundreds of thousands of copies. When I first started in the position DVDs were such a brand-new technology that most people hadn’t even yet heard of them. Within a few years, though, DVDs exploded, and just as my disease was forcing me to to “retire”, Blu-ray discs had started to emerge as the next generation of consumer media. Now, over seven years later, streaming video (à la Netflix) is all the rage, a development I'd long anticipated  but never got the chance to play a hand in.

The changing landscape of video production and consumer consumption has marched on without me, and the technological infrastructure to which I was a native and used daily to earn my keep has in short course become archaic. If I were to be suddenly cured and tried to reenter the workforce I’d be so far behind the curve that some snot nosed kid just out of college would put my once formidable technological knowledge to absolute shame. As far as my former industry is concerned, I might as well have spent the last seven years on a spaceship in suspended animation. Ground control to Major Marc…

The shock of my diagnosis created a seismic shift in my existence, and that shock reverberates still. You’d think that 11 years after my initial diagnosis, and over 15 years since my first symptoms started cropping up, I’d have somehow gotten used to the idea of my illness and its destructiveness, but no, several times a day I still find myself smacked in the head by the realities of my predicament. This perpetual state of shock has left parts of me petrified, in every sense of the word. Petrified as in scared silly, but also petrified as in unchanged despite the passage of time. I was officially diagnosed at age 39, and now, at 50 years old, parts of the inner me have been left untouched by the intervening years, stuck in a kind of stasis, in much the same state that they were when the disease first took hold. It’s kind of a diabolical case of arrested development; even as my body becomes ever more decrepit, parts of the me encased inside of it have been untouched by the passing years.

Almost all of my old hopes, dreams, and desires stand frozen, as if parts of my very soul have been put on ice (apologies to Eldridge Cleaver). Now, instead of propelling me forward in an effort to fulfill them, those old longings and expectations only serve to put an exclamation point on just how much the disease has cost me. The physical toll is obvious but the psychic not so much, camouflaged by copious amounts of effort spent trying to maintain a sense of stability and even contentment in the face of this brutal and ceaseless storm. Will I really never get to have my breath taken away by the artistic splendors of Florence, or purchase some ludicrously luxurious and fast automobile, or get stinking drunk on ouzo while carousing on an idyllic Greek island? While healthy, there was always the hope of erasing old disappointments with new successes, of paving over past mistakes with future achievements, but now those previous failings have been transformed from works in progress into set pieces, dioramas in the museum of my mind.

Yes, I dreamed big, and dreams die hard. In fact, I don’t think they ever die at all, but my old dreams now lie fixed behind a set of more humble but – barring any medical breakthroughs – much less achievable desires. To simply stroll through the springtime air, or to hug my wife with two strong arms, or to mindlessly jot down a note with my now-defunct right hand. In my long-ago life I amassed extensive collections of antique cameras and vintage wristwatches, both of which I took much delight in putting to good use. Now they sit gathering dust in boxes, physical remnants of a life suspended, the impulses that lead to my possessing them still existent but now also packed away by the distressing actualities of my stark new reality.

Much like those science-fiction spacemen, I awake to an environment that is resonant with echoes of my past. This new life is often incredibly difficult, to be sure, but the challenges it presents are also opportunities. Though some old friends and acquaintances have drifted away, new ones, fellow travelers on these uncharted waters, have made the journey much less lonely. The loyalty of my wonderful wife alone is reason to have faith in humanity. By extracting me from the hue and cry of my old healthy existence, my disease has afforded me a sense of perspective that informs my  day-to-day life, and, I hope, might even help some of my comrades both healthy and ill to better navigate their own winding roads.

I’ve learned to not sweat the small stuff, and that most of what I used to consider gut wrenching problems are in reality small stuff. As my disease continues its infernal progression, finding contentment in what I have rather than what I once wanted or have lost has become a mechanism of survival. As the Buddha discovered centuries ago, desire, or more accurately attachment to desire, is indeed the root of all suffering. Despite the undeniable hardships within which I find myself stuck, I laugh just about as often as I used to, the sheer absurdity of my situation fodder for more laughter than tears. My mom is dealing with her own sense of suspended animation, courtesy Parkinson’s disease, yet somehow our telephone conversations often find us convulsed in hilarity. We both have more than a touch of the rascal in us, and the juxtaposition of our old pre-suspension hijinks with our new more sedentary and sedate forced existences serve to highlight the farcical nature of our puny little lives. Taking oneself too seriously is perhaps the gravest mistake a person can make.

Don’t get me wrong, despite the lessons learned and perspective gained, there’s virtually nothing I wouldn’t do to regain my health. As my creeping paralysis continues its increasingly destructive march, my tolerance for risk in my search for answers has become almost boundless, but despite my precarious situation there is still satisfaction to be squeezed out of these undeniably frightful circumstances. The old me is indeed in suspended animation, hopefully one day to be roused once again, but there is still life to be lived in this strange new world in which I find myself. It’s certainly not a life I would’ve chosen, but like it or not, it has chosen me. Despairing over my losses is only natural, but giving in to that despair would hand victory to the cosmic pranksters that conspire to make me the butt of their joke. I still have a middle finger capable of being raised, and with that raised finger I’ll continue to poke those pernicious little fuckers right in their beady little eyes. The joke's on them, for although part of me has been put into suspended animation, I'm still full of piss and vinegar…