Bits and Pieces: Can’t Please Everyone Edition (Also, MS and: Statin Drugs, Ancient Viruses, Obesity, and Contraception; Thank Your Doctor, and an MS Photo App!)

For those readers who receive Wheelchair Kamikaze via email, this post contains videos that can only be viewed on the blog website (click here).

In my meanderings around the MS Internet, poking my nose into both highly trafficked spots and those more obscure, I occasionally find references to individual Wheelchair Kamikaze posts or to the blog in general. Usually these mentions are quite complementary, and upon reading them I sit before my screen blushing like a young man who just vomited at his boss’s table during the office Christmas party (um, not that I would have any firsthand knowledge of what that would feel like… and if Mr. Riley is reading this, I still insist it was the Cornish hens and not the Bombay Sapphire martinis).

Over the past week or so, though, I noticed comments from a couple of people who weren’t all that thrilled with me. Not that this is necessarily a bad thing, because I like to think that I’m very open to healthy criticism, and besides, it was interesting to see just how many times an iPad can bounce off the floor before becoming completely nonfunctional.

One critic said that I was very “pro-chemotherapy”, and the other labeled me as part of the “CCSVI Mafia”. I find these characterizations somewhat puzzling, since they are kind of contradictory, and I’m not sure either is accurate. I often come down hard on some of the unsavory business practices of the pharmaceutical companies, but I think I give their products a fair shake (I guess too fair, in the eyes of some), and when I write about CCSVI or other alternative treatments I always try to stress that one must be careful not to let hope eclipse reason. I suppose the fact that people can read my stuff and come away with such divergent opinions might mean I’m actually doing a pretty good job; on the other hand, it could also mean I’m totally incoherent. Birdseed armpits genuflecting knuckle fish, Tennessee Titans!

For the record, I think it's silly to be "pro" or "anti-" any particular form or category of treatment. Each MS patient is different, and each must weigh the risks and benefits of any treatment they are considering based on their own individual circumstances. Some currently marketed pharmaceutical MS drugs might often fail such an analysis, but other would certainly be in play. Same thing holds true for many unconventional therapies. Education and an open mind are a patient's best weapons against this disease, and will continue to be regardless of the many twists and turns the MS story takes as it continues to unfold.

Okay then, enough of my belly gazing, here’s another collection of mostly MS related items that have tickled my fancy or raised my hackles over the last month or so. I don’t think any of them tickled my hackles or raised my fancy, as to do so they’d at least have to take me out for dinner and a movie first…

♦ First up, an update on the fundraising campaign for the Tisch MS Center’s FDA approved MS stem cell trial, which I wrote about extensively in my last post (click here): As I write this, the Center’s Indiegogo campaign is approaching $200,000 raised, two thirds of the way to their target of $300,000. As I detailed last week, this stem cell trial could play a pivotal role in one of the most promising new directions in multiple sclerosis research, and contains within it the hope that someday in the not-too-distant future we may be able to reverse the damage done by the disease. So, a big thank you to all WK readers who have already contributed, and a big “please help” to those who haven’t yet done so. Every little bit helps, and a contribution of even a dollar or two gets the trial that much closer to swinging into high gear. Contributing is easy, just go to the Tisch Center’s Indiegogo page (click here) and click the “Contribute Now” button. Thank you thank you thank you.

♦ This week’s big MS headlines involve a study which found that a drug commonly used to control cholesterol might dramatically slow the progression of multiple sclerosis in patients with Secondary Progressive disease (click here). The phase 2 study, called MS-STAT, demonstrated that the statin drug simvastatin (brand name Zocor), when given in high doses, slowed brain atrophy by as much as 43% when compared to a placebo. Brain atrophy (shrinkage) is increasingly being recognized as an important factor in the MS disease process, and may be more indicative of disability and disease progression then other more commonly used indicators such as brain and spinal cord lesions.

The MS-STAT study is intriguing on several levels. The fact that a class of drugs as commonly used as the statins may be effective in treating progressive MS is both intriguing and problematic. Intriguing because the drugs are already in widespread use and have been shown to be safe over the several decades since their introduction. Therein, though, is also the problem. Because these are old drugs, their patents have expired, meaning they are available as cheap generics. Therefore, there’s not much profit to be made from them, and thus there is very little incentive for pharmaceutical companies to pony up the many millions of dollars it would cost to put these drugs through the final phase 3 studies that would be necessary to get them approved for use in MS patients. This isn’t really the fault of the pharmaceutical companies, per se, as they are for-profit operations in business to make money. Rather, this shines a bright spotlight on our very broken medical research model, which relies far too heavily on Big Pharma funding to drive research forward.

It’s conceivable that neurologists could prescribe simvastatin to MS patients on an “off label” basis, since the drug has already been approved for use in humans as a cholesterol buster. Problematically, though, the doses used in the MS study were quite high, and statin drugs do have some known side effects, including muscle weakness, which certainly wouldn’t be a good thing for MS folks. The MS-STAT trial was a relatively small phase 2 study, and its results beg to be replicated in a larger phase 3 study, especially since previous trials testing the use of statin drugs as an add-on therapy for RRMS patients did not demonstrate effectiveness (click here), and some studies showed that statin drugs may inhibit the remyelination process (click here). Let’s hope that somehow phase 3 studies can be funded, as progressive MS patients are in desperate need of effective treatments.

♦ One of my favorite theories about the cause of MS involves human endogenous retroviruses, or HERVs, which I wrote about in detail last year (click here). The theory is once again making headlines (click here). HERVs are ancient bits of retroviruses (viruses similar to HIV) that have been incorporated into the human genome throughout the course of millions of years of evolution. Hard as it may be to believe, studies have found that about 8% of human DNA is actually made up of these ancient viruses. Scientists had long thought that this ancient viral material was simply leftover inactive garbage, but recently researchers have found that, under certain conditions, these ancient viruses can be switched “on” and cause our own cells to express proteins that could lead to all kinds of problems in the human body. HERVs have been associated with autoimmune diseases, cancers, and even some mental illnesses.

There are currently two trials underway attempting to use drugs to target HERVs in MS patients. One study, being conducted in London, is using an off-the-shelf HIV medication called Issentris in an attempt to treat MS. This study has its genesis in the observations of an Australian virologist, Dr. Julian Gold, who treated a patient unlucky enough to have both MS and HIV. After the patient started taking powerful anti-HIV drugs, Dr. Gold observed that the patient's MS symptoms gradually improved, and after two years the patient was no longer experiencing MS relapses. Subsequent studies have indicated that the risk of MS is markedly lower in HIV patients undergoing anti-HIV therapy than that of the general population. Interesting stuff, to say the least…

♦ Two new studies point to a hormonal component in the MS disease process (click here). One study found that people who were obese at age 20 had a 50% higher chance of developing MS than their thinner counterparts. Obese people also generally have higher levels of lectin, a hormone that controls weight, appetite, and immune response. The second study found that women who took hormonal contraceptive pills had a 35% higher rate of developing MS than women using other types of contraception or no contraception at all. Most of the women taking hormonal contraceptives were on pills that combined estrogen and progestin. Researchers suggested that this finding may explain the rising rate of MS in the female population.

It’s long been thought that hormones play some role in MS. Pregnant women with MS usually see their disease go into remission during their pregnancies, and male MS patients often exhibit low testosterone levels. On a personal note, my entire endocrine system is completely out of whack, with many of my hormone levels all over the place. I’m the only male who suffers from PMS (in my case, the initials stand for Phooey on Marc Stecker).

♦ Do you have a physician that deserves a great big “thank you”? Do you want the chance to win a $10 iTunes gift card? Well, if the answers to those questions are yes, you’re in luck, because it just so happens that March 30 is National Doctors Day and the fine people at Sermo.com are asking that patients contribute a message via the Sermo website thanking their favorite doctors (click here). Sermo is a social networking site for doctors, kind of a Facebook for physicians. The thank you’s can be submitted in written or video form, and the 50 best will win a $10 iTunes gift card. Written comments can simply be left on the Sermo blog (click here). Video entries should be uploaded to YouTube and include “DocsDay” in the title. The video link should then be tweeted to @sermo with the hashtag #DocsDay.

I know that many patients have a love/hate (or even a hate/hate) relationship with some of their doctors, and I also know that some physicians deserve not a thank you but a whack in the head with a horse manure filled sock. But there are many gems amongst the folks who have the initials M.D. after their names, and those paragons of their profession certainly deserve a public shout out. As of this writing, there were less than a dozen written thank you’s on the Sermo.com blog and just a few videos on YouTube with only three days to go before March 30, so your chances of winning a gift card are probably pretty good if you submit a heartfelt message before the deadline.

On the video “thank you” side of things, this lady decided to extol the virtues of her MS neuro in song, and all I can say is “wow!”:


♦ Here’s an MS fundraising/awareness project that’s right up my alley. Seeing MS is a project done in conjunction with the Australian MS Society that has matched professional photographers with MS patients to attempt to produce photographic representations of “invisible” MS symptoms (click here). The photos thus far produced are remarkable, but to me the best part of the project is a photo app that MS patients (or anybody else) can download for their iPhone or android devices, which has unique filters that can be used to create photos that emulate nine of the more common symptoms of MS.

Amateur MS phone photographers can shoot pictures using the app, apply the filter of their choice, and then upload their photo to the Seeing MS website, where it will be displayed for all to see. The best images will be chosen to be part of an exhibition and auction to be held at the end of April. So download the app (click here) and start clicking away. I’ve already uploaded a photo or two, and would love to see some of my WK brethren join me in displaying their work on the Seeing MS website.


♦ I’ll sign off with the following video, which explores a topic I'm very much familiar with, the enigmatic hour of 4 AM. I am by nature a nocturnal creature, always have been. Even as an infant, my mother tells me, I was prone to stay up very late and then sleep well into the morning. When the realities of adult life forced me to conform to the typical 9-to-5 hours of the workaday world, I found the schedule to be quite torturous. Since "retiring" due to my illness, I've reverted back to my natural inclinations. While most people are long asleep by 4 AM, and some poor souls are just waking up, these days I find that hour to quite often be my bedtime. In the below clip, a part of the famous TED talk series, the poet and storyteller Rives reveals his humorous discovery of a 4 AM conspiracy, the hour encoded into the very fabric of our culture as a sort of touchstone for things mysterious and gloomy. So, are my sleep habits merely a coincidence, or have I tapped into some kind of cultural zeitgeist, my late-night predilections a reflection of some universal subconscious? Well, I don't believe there is any such thing as coincidence, but if my quirks are symbolic of a hidden societal phenomena, I fear much wackiness may ensue in our collective future…



RIP Brett Weber, gone but never forgotten. Thanks for the smiles.

Pioneering MS Stem Cell Trial Needs Your Help!

I've very rarely used Wheelchair Kamikaze to directly appeal for charitable donations to help any individual research project, as I've always been extremely wary of abusing the trust that's been built up between me and my readers. Very recently, though, I've been alerted to a cause that I feel is so fundamentally worthwhile that I decided to devote this entire essay to making such an appeal.

It is my most fervent desire to see crippling neurologic diseases wiped from the face of the planet, and to put the nightmarish world of such diseases firmly in the realm of history. There is a long-awaited research project currently in need of funding that has the potential to radically change the MS treatment landscape. Before I get into the dollars and cents of things, though, let me first provide a little background.

One of the most cherished dreams of every patient suffering from the ravages of multiple sclerosis is to see their losses reversed, to one day triumphantly trash their canes, walkers, and wheelchairs; to at long last find eyesight restored, withered limbs strengthened, and numbed minds sharpened. For those whose lives have been victimized by MS, this is the stuff of reverie, a hope so precious that it can sometimes feel taboo to speak of for fear it may be crushed.

It is the power of such dreams that make the use of stem cells to treat multiple sclerosis one of the most tantalizing areas of study currently underway in the world of MS research. Stem cell therapy offers the hope of repairing damaged tissues in the central nervous system, thereby restoring function lost to the scourge of disease. All currently available MS therapies seek, at best, to put the brakes on disease progression. None are targeted at or capable of neural regeneration, the process by which damaged nerve cells might be fixed and lost function thus regained.

Despite exciting headlines and overhyped internet buzz, the reality is that research into the use of stem cells to repair MS damage is only now taking its first baby steps. Like most paradigm shifting scientific breakthroughs, the realization of the dreams for stem cell therapy will take time, the effort of brilliant minds, and money. There are currently only two FDA approved trials of the use of reparative stem cells to treat MS, one at the Cleveland Clinic and the other at the Tisch Multiple Sclerosis Research Center of New York (click here), which is associated with the clinic at which I am a patient.

Both studies intend to use stem cells derived from a patient’s own bone marrow in an attempt to repair the damage done by the disease. While the two studies each use a type of cell called mesenchymal stem cells, or MSCs, the study at the Tisch Center uses a more complex but also potentially more powerful approach. After more than a decade’s research by a team of scientists dedicated solely to stem cell therapies, led by Dr. Saud A. Sadiq, researchers at the Tisch Center have developed a proprietary method for turning mesenchymal stem cells into neural progenitor (NP) cells, a type of stem cell specific to the central nervous system (CNS) that, in theory, should be extremely effective at repairing CNS damage at the source of the problem.

The process begins by extracting bone marrow from each patient; the patient's mesenchymal stem cells are then separated out from this material. The Tisch Center then takes those MSCs, and, using a recently patented process, inducing them to transform into potentially more potent neural progenitor cells, which are then multiplied over several months in the laboratory. These NP cells will be injected directly into the spinal fluid of trial subjects, in three individual treatments, each given at three-month intervals. Preliminary studies using animals have provided very encouraging results, and nervous system damage has actually been reversed. The Holy Grail of MS research may finally be within sight.

The Tisch Center, which is an independent facility unaffiliated with any university or hospital, had been applying to get FDA approval of their proposed trial for many years. During this time, federal regulators diligently insisted time and time again that more evidence be provided and that further animal studies be done. Throughout this arduous process the staff of researchers at Tisch worked hard to refine their techniques and methodology, and produced increasingly convincing data. The Tisch Center finally received their long-awaited FDA approval in August, 2013. That glow you see coming off of your screen may be the first light of a radical new age in MS therapy creeping over the horizon.

Unfortunately, one major roadblock stands in the way of launching the now FDA approved Tisch Center MS stem cell trial: funding. Though the Tisch Multiple Sclerosis Research Center of New York is a registered nonprofit organization, almost all of its fundraising efforts thus far have gone into the research that has made this trial possible. The cost of the initial 20 patient trial will be about $600,000. Towards reaching that end, the Tisch Center has set up a funding page at the crowdfunding website Indiegogo, where people from all over the world can contribute any amount from one dollar to fifty thousand dollars or more to help set the trial in motion (click here). For those in the US, the Tisch Center’s foundation is fully 501(c)(3) compliant, so any donations made are completely tax-deductible. The Indiegogo campaign has a set goal of raising $300,000 by April 14, 2014 at 11:59 PM PT. The campaign has already collected over $100,000 in donations, so as of today there’s about $200,000 to go. Detailed information on how these funds will be spent is available on the Tisch Center’s Indiegogo funding page (click here).

It may seem strange that an FDA approved trial should lack sufficient funds to get started. The Tisch MS Research Center of New York is an independent research organization funded solely through charitable donations, a status that has allowed it to pursue audacious research goals, but which also means that it doesn’t have the deep-pocketed resources that a research group affiliated with a well-endowed university or hospital might. Medical insurance does not cover the costs incurred by patients undergoing trials, and researchers at Tisch consider it unethical to require trial subjects to pay for unproven treatments.

Traditionally, medical research has been funded by the federal government or, increasingly, by the big pharmaceutical companies. Ongoing battles over the US federal budget have resulted in the (in my opinion unconscionable) slashing of medical and scientific research funds to paltry levels (click here, here, and here), and thus far no pharmaceutical company has funded any trials using a patient’s own stem cells, quite likely because the success of such a trial could have a tremendously negative impact on the mega-profits many companies are making selling MS disease modifying drugs.

It is a matter of record that the pharmaceutical industry concentrates tremendous resources on influencing the FDA (click here, here, and here), and is actively lobbying to have the FDA declare that a patient's own stem cells are pharmaceutical products (click here, here, and here), an outrageous claim (again, my opinion) which would effectively shut down independent stem cell research organizations like the Tisch Center and place adult stem cell research firmly in the hands of Big Pharma. It is always vitally important to remember that these are public companies whose legal mandate is to continually expand their bottom lines, a motivation that sometimes puts shareholder interests at odds with those of the patient. Big Pharma innovations have dramatically increased the quality of life for some MS patients, but the reality is that conflicts of interest arise when there are billions to be made treating a disease, not curing it. Yes, I’m fully aware that to some the previous sentences may read like the rantings of a paranoid schizophrenic, but if I’m completely nuts, I’m in good company. Please read the material linked to above, which includes an opinion piece from the bastion of anti-capitalist radicalism that is the Wall Street Journal, and connect the dots…

As stated earlier, I’ve rarely used this blog as a platform to solicit donations for any cause or organization, but I feel funding the Tisch Center MS trial is tremendously important to people with MS and all those who love them. I’m sick of being sick, and I’m sick to death of watching many of my MS friends slip ever further into the clammy grasp of this horrendous disease. Because of the atypical nature of my illness, I very likely will not be part of the 20 person trial, so I’m not making this appeal on my own behalf. At least not directly on my own behalf, as the success of this trial stands to benefit all patients suffering from not only MS but a wide variety of other neurodegenerative disorders, and traumatic brain and spinal injuries as well.

So, from the bottom of my Wheelchair Kamikaze heart, I ask all of my readers to do themselves or their loved ones a favor and (click here) to donate even the smallest amount to move the Tisch Center’s stem cell trial forward. And please, please, please pass the word along (or forward this blog post) to family and friends using email, Facebook, Twitter, or any other newfangled thingamajig or whatchamacallit to help make this cause go viral, as every donation great or small could very well take us that much closer to the stuff that dreams are made of…

Sorry, couldn’t resist conjuring up a little Humphrey Bogart there at the end. I was a film major, after all. Speaking of film, the below video detailing the Tisch Multiple Sclerosis Research Center of New York’s stem cell trial and fundraising effort is also available on their Indiegogo fundraising page (click here).


Tremendous thanks in advance to all who find it in their hearts to make a donation.

11 Years Gimpy and the Lessons Learned, Part One: Life

March 9, 2003 was a typical late winter’s day in New York City. The temperature was about 30°F, but the sun shone brightly, and in the late afternoon, feeling a little bored and just wanting to get some fresh air, I decided to take my furry pal Stella the Labrador Retriever for a nice long walk. We made our way to a bike path that runs along the Hudson River on the west side of Manhattan and headed north, our ultimate destination the Soldiers and Sailors Monument, a structure which was completed in 1902 and is dedicated to the soldiers and sailors who served in the Union Army during the American Civil War. The round-trip would total about 2 ½ or 3 miles.

We arrived at the monument (a photo I took of it that day is to the right) after a brisk 30 or 35 minute walk, stopping every now and then for Stella to do some serious sniffing and other doggie business, and then headed back home along the old uneven cobblestones that paved the section of sidewalk surrounding the 100-year-old memorial. As we walked, I slowly realized something funky was going on with my legs. I seemed to be wobbling a bit with each step, and with my attention focused on just what the heck was happening with my pegs, I recognize that my right knee was buckling backwards with each stride I took. I stopped, flexed and shook my leg a bit, and then continued on, but the strange buckling persisted.

Being a well rehearsed hypochondriac, a long list of possible explanations for my wonky knee flooded my brain. Could be a pinched nerve, I reasoned, or the first signs of something much worse. Brain tumors always topped my list of obsessive fears, so of course the potential for a brain gobbling malignancy immediately sprang to mind. Other candidates included Lou Gehrig’s disease (another long standing dread), spinal stenosis (which crippled my grandmother), and yes, multiple sclerosis (always high in my pantheon of disease paranoia because my initials are MS). I clearly remember thinking that MS was a distinct possibility.

Thus began my adventures in neurology. Though the limp disappeared after I rested a while, it returned whenever I went for an extended walk, and the distance required to bring it on diminished noticeably over the next couple of months. By late April I was concerned enough to haul my limping ass to my M.D., a general practitioner. Though he initially didn’t think there was much to be worried about, an MRI was ordered, and the rest, as they say, is history.

Fast-forward 11 years, and the embers of that intermittent limp sparked a raging inferno that has consumed my entire right side, which is now essentially paralyzed. Clearly not content with demolishing only half of my body, this neurologic rot has continued on to attack my left side, leaving it considerably and ever increasingly weakened. Throw in a veritable potpourri of other neurologic niceties, such as bladder/bowel issues and sensory problems, along with a mystifying array of endocrine dysfunctions, and I’m pretty sure any aliens looking to abduct earthlings for nefarious intergalactic experiments would take a pass on this particular human. Should war break out, the armed forces could probably best put me to use as a sandbag.

This is not to say that the past 11 years have been nothing but pure hell. Though aspects of them have certainly been hellish, along the way I’ve met and befriended some wonderful people in both the virtual and real worlds, and learned lessons that I’m positive otherwise would have escaped me. While I’m pretty damn sure there are more pleasant paths to enlightenment, grappling with my illness has taught me valuable lessons about myself, life in general, and the realities of modern medicine. To avoid writing a novella, I think I’ll tackle the assorted lessons learned in two blog posts, this one covering some of the insights gleaned regarding life with chronic illness and the realizations that my circumstances have revealed about the human condition (sounds kind of heavy, no?), and a follow-up discussing my escapades within the hall of mirrors that is the modern medicine miracle machine.

So, what has my life as a gimp exposed about me and my fellow humans? First, I’ve discovered that I’m awfully good at doing nothing. And that doing nothing can take up an incredible amount of time. Of course, “nothing” is a relative term, especially when one is down to working with only two somewhat compromised limbs. When getting on a pair of socks can be considered a triumph of the will, expectations naturally become tempered. Yes, I’d love to reclaim my place in the hypersonic land of the healthy, but, barring some paradigm shifting medical breakthrough, that’s not about to happen. So acceptance is the key, so long as acceptance is never confused with submission. I can accept my predicament, and maybe even at times embrace it, but I will never try to reframe it as some kind of blessing or, conversely, roll over and simply let the disease have its way with me. If it turns out the best I can do is just spit in the face of the disease, then I’m going to hock up one hell of a loogey.

I’ve discovered that I have far more fortitude than I ever would’ve imagined back in my anxiety ridden pre-multiple sclerosis life. Watching the disease continuously chomp away at me has been nothing short of horrifying (not really a strong enough word), and yet here I am, still able to have a good laugh, root for the Red Sox, and scream curses at politicians on TV. This fortitude, though, is born more out of necessity than from some hidden wellspring of bravery. I can either curl up into a ball or try to get on with life as best I can, and curling up into a ball would just flat out suck. At times I’ve read or heard others refer to me as some sort of a hero. Let me state emphatically that I am no hero. A hero is somebody who voluntarily puts themselves in grave danger, or otherwise displays some sort of uncommon valor. People who throw themselves on grenades to save their comrades or run into burning buildings to help those trapped within are heroes. I’m just trying to save my own ass.

Delving into medical research, attempting to continue doing photography in some shape or form, and even writing this blog all fall under the category of “saving my own ass”, each of them an expression of my desire to either get better or at least retain a few remnants of the me that used to exist. The fact that this blog has touched so many and maybe even helped others cope with situations similar to mine is tremendously humbling and fantastically gratifying, but rest assured Wheelchair Kamikaze is simply one man’s desperate attempt at screaming out to the world at large “I’m still here!”

Having said that, I owe a tremendous thank you to all who read these words, and an especially humongous expression of gratitude to those who take the time to comment on these pages or send me emails, even if those emails sometimes don’t get a reply. In many ways you have provided a method to this madness, and helped to turn all of that aforementioned “nothing” that I find myself infinitely occupied with into a definite something.

Life lived under the stress of chronic progressive illness has also revealed some of the less savory aspects of my being. Though I am loath to admit it, I find myself at times suffering from a sort of disease envy. Yes, of course I lust for the vigor of those blessed with health, but in a twisted way I also find myself jealous of people afflicted with diseases somewhat less insidious than mine, and sometimes even of those suffering from illnesses that many would consider far worse than my relentless and progressively disabling malady. RRMS, the flavor of MS defined by relapses and remissions, comes with its own set of horrors, but at least there are treatments for the disease, however imperfect they may be, and part and parcel with RRMS come those periods of remission. So, yes, all of you relapsing remitting people out there, you are the object of my envy, as cracked as that may be. I don’t in any way mean to diminish the awfulness of your situation, but I’m just telling it like it is.

Perhaps crazier still is the fact that there are moments when I find myself staring green eyed at illnesses that most would consider beyond the stuff of nightmares, like incurable cancers and even ALS. Now, there’s an ugly admission. Thing is, when those almost unimaginably horrific diseases are done brutalizing those they afflict, they at least have the common decency to kill their poor victims. Not progressive MS, though, fiendish beast that it is. Instead, the dreadful dark at the end of the progressive MS tunnel is the almost unthinkable reality of being forced to live out life as a fully conscious brain trapped in an impenetrable prison of useless flesh and bone. Ghastly, just ghastly.

Is such an end inevitable? No, there are certainly cases where the disease slows down or even ceases, but so far I’ve never had a hint of either, and I’m not even sure that what I have is Primary Progressive MS. I’m never one to give up on hope, and who knows, tomorrow may be the day that some tremendous advance springs forth from some researcher’s test tube. Nobody lives forever, though, and these past 11 years spent contemplating my own mortality have left me wholly and truly unafraid of death. In another 100 years the planet will be populated by a whole new set of people, and I and everyone reading these words will be just the faintest of memories if we are remembered at all. I honestly find comfort in that thought, and it reaffirms my conviction that life is all about quality, not quantity. Cuddly fluffy puppy dogs frolicking with baby bunnies – sorry, just had to throw something in there to lighten the mood…

One entirely unexpected result of my affliction is that, ever since I was forced into “retirement” seven years ago, my life has been split into two distinct sections: my healthy life and my life as a gimp. My rather sudden evac from the ongoing narrative of my healthy life afforded me, after the shock of my new circumstances wore off, the opportunity to look back on that old life and dissect the infinitely tangled strands of decisions, coincidences, actions, and fate that determined its shape. In effect, the experience was almost like attending my own funeral. In many ways the old me is dead, in as much as most of the narrative strands that I’d been weaving have been severed. Hopes and expectations for the future had to be completely revised, targets tempered and shifted, and semi-amorphous plans to rectify old wrongs or revive dreams and aspirations through some future triumphs put to bed. Not that this was all entirely negative, as this fracturing of my existence gave me a chance to glean from the wreckage insights and realizations that have been quite illuminating. Even as my body has deteriorated, my inner life, the one inside my head, has at times achieved a kind of clarity I never would have thought possible. Don’t get me wrong, much of the time I’m just as befuddled as I ever was, but now that befuddlement is occasionally punctuated by moments of exuberant understanding.

I’ve learned how important it is to forgive past transgressions, both those committed by others and, perhaps more importantly, those of your own making. Holding onto old grudges is toxic, but we can grow so used to living with our poisons that the prospect of letting them go can seem excruciating. We’ve all been screwed over by others and by ourselves, but what’s done is done and no amount of indignation, righteous or otherwise, can right old wrongs. Festering anger burns only the one harboring it, and hate is the enemy of happiness. Practicing kindness is of course a virtue, but practicing kindness to self, perhaps the most difficult form of kindness to tender, is a balm for the soul. This doesn't mean giving yourself a blanket pardon, as you must take ownership of the wrongs you've committed, but you also must learn to release them. Not saying that I have the whole kindness and forgiveness thing mastered, but recognizing its importance was a huge step forward.

Being disabled has forced me to accept the help of others, and guess what, rather than being diminishing, allowing others to lend a hand can be empowering for both parties. And in my case, when I say “lend a hand”, I’m not always talking figuratively. I can exhaust myself struggling to put on a coat, or I can accept the assistance of a friend or stranger and save my limited resources for more important things. Hey, these days I’ll even let them zip the damn thing up. I’ve come to understand that this is a classic win-win situation. By accepting, or even asking for, the help of others, you’re giving them a chance to do their good deed for the day and to then feel noble for a while. So in a sense, by asking for help you’re also doing your good deed for the day. Sure, it may take swallowing a little pride, but as they say, pride goeth before the fall. And when it comes to MS, that fall could easily lead to a bruised forehead.

Examining many of the relationships I had in my old life, romantic or otherwise, lifted the veil on what I believe are some truisms about human behavior. One of the biggies is that liars lie and cheaters cheat. Of course, none of us are without blemishes, and we've all done things that would make our mothers embarrassed to have borne us. Most of us suffer varying degrees of remorse over our indiscretions, but there are those out there for whom lying and cheating become a modus operandi. Once a person accepts such behavior in themselves, it’s a surefire bet that they will continue those behaviors, heedless of the damage they may do to those around them. They may protest vigorously that they’ll never ever again do such a vile thing, but you can almost rest assured that somewhere down the line liars will lie and cheaters will cheat.

A closely related insight is that most people assume that others are pretty much just like them. So, habitual liars assume that everyone else lies too, and folks who are by nature primarily honest think that others are generally playing it straight. Danger abounds when these two worlds collide, the brunt of which is borne by the sincere. Therefore, it’s vitally important to recognize people for who they are, though their base selves may be hard to discern under layers of charm and guile, and we can at times he willfully blind to such characteristics due to our own complex psyches. Eventually a person’s true nature will reveal itself, and if that nature includes an acceptance of deceit, recognize it and put that knowledge to good use. This goes for romance, friendships, and business relations.

I’m not saying everyone should live a saintly existence, as I’m a firm believer that some occasional debauchery is harmless, and is in fact essential to living a interesting, fulfilling life. Some of the most remarkable and stimulating people I've met have faults a mile wide, and in fact it's those imperfections that often make these people so beguiling, but do yourself a favor and when dealing with those of this ilk go in with your guard up and your eyes wide open. Nobody is entirely good or bad, it’s all a matter of degree. Some people, though, do have a wicked gravity; be careful not to get sucked in.

Which I suppose brings us back to practicing both kindness and forgiveness, mostly because this essay has become so god-awful long despite my assurances that I wouldn’t write a novella. So please forgive my verbosity, and if you’ve managed to make it this far, I offer you my kindest thanks.

Stay tuned for part two, which will deal with all I’ve learned navigating the medical minefields these past 11 years. I promise, I’ll try to keep it shorter than a Russian novel…