Wednesday, March 12, 2014

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…

25 comments:

  1. I wish it wouldn't have come at the expense of you having to endure Primary Progressive Multiple Sclerosis, but your writings have touched lives much more than I think you're fully aware. Some who could see themselves in you and some who might not have MS,but only read your blog out of curiosity and to get that familiar thought that I believe can be universal to us all, "I'm so glad I'm not going through what that person is." Either way, even though MS is ravaging your body, you're proving that you're winning in ways that fully able bodied people can only dream of in your ability to evoke empathy in most likely even the most self centered of souls.

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    1. Thanks so much for your extremely generous words. Even after five years, my experience with this blog is still mind-boggling. I really never expected more than a few dozen people to ever look at the thing, and the fact that I may have been able to help other folks facing a predicament similar to mine evokes all kinds of emotions, all positive. I just wish there weren't so many of us out there…

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  2. Marc you say the things I think about daily dealing with this private (or unprivate as your zipper note eloquently points out) hell of ms. Searching for the silver lining playbook, while swallowing the daily indignities. You are a light in this ms typhoon.

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    1. Ah, yes, the daily indignities. They sure pile up, don't they? Sometimes, when revealing some of my darker thoughts and feelings, I worry that the blog maybe taking too gloomy a turn, but all I can do is be as honest as possible, and much of the truth about dealing with MS is quite unpleasant. The pressures of dealing with the disease due forge insights and perceptions that otherwise would have gone unformed, and a healthy appreciation for the absurdity of it all goes a long way in making it bearable. Thanks so much for your comment…

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  3. As I once commented, your are getting close to awakening, Marc!
    Your posts are sometimes very uplifting!
    By the way, can you define the duratrion of life?...
    I have RRMS, and have 2 brothers afflicted by MS (one who cannot move at all anymore [EDSS + 9]), so when you write: "you are the object of my envy, as cracked as that may be" what I personnaly feel is guilt when I think of that brother of mine. So you see how many aspects a similar situation can have.
    Bonne continuation, mon ami!

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    1. Yes, life in general is a multifaceted affair. Reality is simply what we perceive it to be, after all. I hope that you're right in that I'm getting close to an awakening, but I only wish the alarm clock had come in a different form. Guess that's not our choice, though. Then again, everything is a choice.

      Can I define the duration of life? I'm of mixed minds, the existentialist in me says that life ends with physical death, but my Taoist/Buddhist leanings, as well as my own strange take on quantum physics leads me to suspect that consciousness survives physical death. Either way, it's okay with me. We either fade to black, or find out what's on the other side. Nothing wrong with either option…

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  4. Thank you for your blog, Mark. I can relate to much of your thoughts...for instance your description of "disease envy" is spot on (thought I was strange for thinking the same way).
    Have a great day :)

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    1. No, you're not strange. At least not in regards to your feeling "disease envy". In our own way, each of us is strange, but that's what makes things interesting…

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  5. As many of the other commenters say, thanks for putting into words the "disease envy" that many of us feel. I told my doctor the other day that there is no point in routine cancer screenings that we have as I will not "fight" cancer if I am afflicted with it. My trigeminal neuralgia pain has changed me beyond what I could ever have imagined. Like you, I am not afraid of death and will welcome it when it comes. I know that you understand one-hundred percent. Thank you for expressing it so eloquently.

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    1. Though I can't say I would welcome death in my present condition, I can foresee a state of deterioration that would be worse than death. Despite your terrible pain, I hope that you are still occasionally able to pick out the nuggets of good that exist in most moments, even if they are buried under a huge pile of crap. I know it sometimes takes a lot of work, but I find it necessary to maintain an acceptable quality of life.. Peaceful thoughts headed your way…

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  6. I am an RRMS. I have never thought I could be envied, but it sure beats being pitied! (especially on the fourth fall into the ditch in front of my own house) This blog touched a nerve about accepting the help of others. As I slowly come to the realization that I am not Superwoman, (I am terribly slow to grasp some concepts) I have grudgingly given in to some of the proffered help. Terribly hard, considering the size and physical ability of my Ego. I had already made it part of my Lent sacrifice to accept more of the proffered help and let my pride stand aside. You provide great encouragement and wonderful wit. Thank You.

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    1. Thanks very much for your comment. Yes, accepting help is a hard lesson to learn, but like most necessary changes, once you allow your perceptions to shift things get much easier. Even here in New York City, home of the "tough New Yorker" (a myth, by the way), people sometimes compete to offer some assistance. As John Donne wrote, no man is an island, we are all part of the main…

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  7. Wow Mark,
    As a fellow MSer you write so much of what I think daily and do it very well at that. Thank you, it must be liberating at least to get it off of your chest. I would like to send you an interesting website I came across. In my 23 years of having this crappy disease I have looked on the internet as long as it has been around for any helpful answers and this one slipped by me until a month or so ago. I can see testimonials that have been around for awhile though.

    It is www.watercure.org.
    and also google, bob butts, water cure testimonials.

    At least it is a free way to try to help yourself.

    Take Care, one day we will be relieved of this gimping around.

    Gina

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    1. Thanks for the website, Gina. For those who haven't checked out the link Gina provided, the "Watercure" promotes extreme hydration, which of course is a very healthy thing. Unfortunately, many of us with this disease suffer from bladder Frequency/Urgency problems, which makes drinking the suggested 10 or 12 glasses of water a day a near impossibility, unless we were to take up residence in a bathroom. Still, we do need to try to stay as hydrated as possible.

      I do find it very therapeutic to unload some of my inner feelings on the blog, and it helps greatly to know that others share those feelings. As I stated in a previous comment, though, it's horrible that there are so many of us out there in the position to harbor such emotions…

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  8. Do you get tired of my saying, thanks for another brilliant post? The thing is, you keep writing them. So I have to keep saying it.As well as giving you thanks.

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    1. Well, thank you, and you're very welcome.

      Do I get tired of your praise? No, flattery will get you everywhere…

      Thank you for your keen insights, as well…

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  9. Hi Marc, As always I thoroughly enjoyed your words! I was diagnosed with this shit just about five years ago. My legs are slowly saying their goodbyes as they become weaker and tire ever more quickly. Will it stop here for a spell? Or is this train headed downhill fast? Since I cannot know I guess I'll just ride the bitch!
    I totally agree with you on the topic of having a disease that will at least have the decency to kill you! When first diagnosed some people tried to console me by saying 'at least you don't have cancer.' At the time (before I had read/learned/lived with ms) I thought that too. But now I'm of the mind that it's too bad we are allowed to be more humane to our pets than our people.
    I commented to the NMSS that they should advocate for some type of death with dignity. No I am not suicidal but it sure would be comforting to know that there was an out should it ever get to where I am just a mind trapped in a useless body as I'm sure that I cannot afford the stuff that Stephen Hawking has!
    Anyway, love your way with words. As far as your next post....go ahead, write a novel! I and many others would surely read and enjoy. Thanks, Marc
    Karen

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    1. Karen, I completely agree regarding the obscenity of treating our pets more humanely than we do people. I had a discussion with a former oncology nurse just today, who told me that it's an open secret that very late stage cancer patients are often "helped" to quicken the pace of their end by medical professionals in the field. Nobody wants to watch people suffer.

      Unfortunately, the hardest hit MS patients either wind up warehoused in nursing homes or in their own homes, where such assistance is rarely so forthcoming. The public at large rarely sees this side of the disease, instead they read and see stories about PwMS running marathons or climbing mountains. That's all well and good, but hardly tells the whole story of the disease.

      As I said in the post, as far as I'm concerned life is all about quality, not quantity…

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  10. Many people never learn how much they offer to others simply by asking for help. People want to be needed. It's a trite saying, but we are indeed all in this together. Thanks for sharing with us, Marc.

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    1. You've got that right, Lisa. Accepting help from others is like offering them a little gift. As you said, people want to be needed. Thanks for your comment.

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  11. HELLO MARC I truly appreciate your blogs which indicate you are a self thinker. I have had this disease for 25 years, now I have SPMS. I too have become disenchanted with the so called medical model treatments for MS. I too have looked at other diseases with a green eye. Because I am pretty people assume I am doing well, the more weight I lose people assume I am well. There is so much with MS that people refuse to see. People are ignorant to what we suffer. Remember.....I have Ms but it doesn't have me . Now in Canada its all about your attitude.........be positive. This cycle we have ms ambassadors. I recognize MS for what it is........Cancer is not the only disease. MS is brutal! I think newly diagnosed ms'ers need to know the truth. That is why the public is misinformed......a friend told me isn't it a good time to have ms? Yes I do get envious of how cancer is seen as the worst!
    Best regards to you and those who read this blog..Thank you for letting me vent my concerns. Don't give into psychic vampires who don't recognize this disease for what it is. Applehead

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  12. friend of a friendMarch 16, 2014 at 11:02 AM

    Marc, please, please, please continue to say what there is to say!

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  13. Marc, how is it that I never knew you existed? We have obviously been attached at the hip for lo these many years. This insidious affliction attacked my left side (read dominant) first. After that, my story reads like yours almost verbatim... Thank you for speaking my life with your words. MS is killing us slowly, but doesn't have the courtesy to be outright fatal in execution.

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  14. Marc, I understand your comments about disease envy, though mine has been more on the positive side. There are at least effective, though painful, treatments for cancer that often actually end the disease for so many, so why not me? However, I am thankful that I still are officially only suffering from RRMS, though the remission stage still has me walking with a cane and sometimes wishing for a wheelchair. I long for the days when no one knew anything was wrong instead of the days when I have to tell people who don't know about my MS that no, I don't have an injury, the orthotic is to help me walk because I have MS, yada yada. I will add that people with ALS have more in common with you while they are alive than you suggest; they are completely mentally clear until the end, though they may not be able to vocalize their situation. That being said, I have just come across this blog and enjoy your intelligent wit and humor in the face of a very unfunny situation.

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  15. Hey Marc,
    Thank You for your blog, I have a myriad of disabilities/chronic issues, but have not had the guts to get MS testing, I have had a lot of physical deterioration over the last 3yrs.
    I have recently moved back to Toronto canada from halifax canada ( currently homeless & having had to fight to get back on disability pension), have battled for 12 yrs to not be in a power wheelchair, but 2 yrs ago, my body made that choice for me.. From being on a cocktail of 22 medications, to now being in the power chair, on only 6, with truly amazing amounts of energy in comparison to before, yeah admitting to the fact I should have been in the chair 10yrs ago, was devastating to my ego, Had I had any!!

    The recent loss of a fellow WCJ'er has also shattered me..

    I thank you for "keeping it real"

    SHALOM

    E.Daigle

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