Saturday, February 4, 2012

Don't Get Stuck in the Suck


(For those who receive Wheelchair Kamikaze via e-mail, this post contains a video, which can only be viewed from the WK website)

In one of my recent posts, I mentioned that having a progressively crippling disease royally sucks, but that somehow I've managed to learn how not to get stuck in the suck (click here). I thought I might expand on that idea some, in part because it's a hard yet vitally important lesson to learn, but mostly because I'd like to see the expression "Don't Get Stuck in the Suck" emblazoned on T-shirts, billboards, beer cozies, and ladies undergarments from Paris to Beijing.

I've seen and heard some folks with MS express the sentiment that their getting sick was somehow a blessing, in that it gave them a sense of perspective and allowed for a richer existence intellectually, spiritually, and philosophically. Well, more power to those people, but from where I sit watching myself slowly wither away just flat out sucks. In one of my very first blog posts, I wrote that MS sucks big fat hairy monkey balls (click here). Now, almost 3 years deeper into the progression of my disease (which is now a mystery illness (click here)), I can say with utmost surety that whatever ails me sucks something far more disgusting than big fat hairy monkey balls. At this moment I'm having a hard time thinking of anything more disgusting to suck, so let's have some fun and make this an interactive exercise. Please leave your ideas for something that's more disgusting than big fat hairy monkey balls with which you equate having your disease in the comments section below this post. Hopefully, your efforts will be both cathartic and extremely entertaining for all involved…

Okay, given that having a chronic progressively disabling disease sucks -insert super disgusting object here-, how does one saddled with such an affliction not get stuck in the suck? Well, it takes a lot of mental discipline, as well as a liberal dash of the perspective that being sick does indeed impart. Don't get me wrong, along with the "Blessed with MS" people, I readily acknowledge that the disease has led me to live a much more enlightened life, but given my druthers I'd happily go back to my former sometimes miserable and largely unenlightened but physically healthy old existence. If I could take with me just a smidgen of the wisdom that's been pounded into my head by dealing with a chronic progressive illness, all the better, but that certainly wouldn't be a prerequisite for a visit from the good health fairy. Unfortunately, I don't think the good health fairy is going to be flitting around my bedroom anytime soon, so in order to avoid getting stuck in the suck I've found that it's extremely important to not compare your circumstances to anybody else's, and especially not to yourself as you once were.

While zooming around the streets of New York City in my wheelchair, I'm usually able to keep myself amused and engaged by simply soaking up the sights and sounds of the city whizzing by, and occasionally scaring the living crap out of unsuspecting pedestrians as I careen past them just a wee bit too close. I've only actually hit maybe three people, but I'm convinced they were all really bad people. When I'm in Central Park or down by the Hudson River, I'm typically busy taking photos, watching and listening to street performers, taking in the scenery and parade of humanity, or a combination of all three. I also consciously try to not project an "I'm a victim" vibe, and approach these activities con mucho gusto, or at least with as mucho gusto as I'm feeling capable of on any particular day, which sometimes is more lesso then mucho.

This combination of outside distractions and inner focus usually keeps me from getting ensnared in any self-defeating mind traps, but occasionally the shields do go down and I find myself overcome with waves of tremendous envy for the swarms of people who can simply walk, jog, dance, ride a bike, lay out on a bench under a shady tree placidly reading a book (trying to read a book with only one working but wonky hand is damn near impossible), stroll hand-in-hand with their partner while lost in idle chatter, or do any one of the infinite number of things that I once accomplished without thought or effort but now are completely beyond my shrinking repertoire of tricks. At such moments all it takes is just a gentle push, and down into the vortex I tumble, pummeling myself from the inside out with a toxic mix of regret, chagrin, anger, helplessness, fear, panic, and dread. Into the darkest black hole I plunge, sucked in by the almost inescapably wicked gravity of big fat hairy monkey balls.

It's very hard to climb out of such a pit, and extricating myself usually entails screaming, crying, cursing the universe, and driving my wheelchair even more recklessly than usual (again, taking care to hit only really bad people). When caught in such a trap, you must not allow yourself to inflame the situation by getting down for being down, or else you'll get caught in a vicious loop, a snake eating its own tail. Admittedly, when dealing with a heinous disease, it's impossible to never plumb the depths, but it's imperative to keep such forays to a minimum. To do that, to avoid getting stuck in the suck, one must exercise control over the thoughts and emotions that create each person’s own version of reality. The treacherous shoals of agonizing self-pity constantly whisper an enticing siren song, and sometimes it's awfully difficult to not allow yourself to venture dangerously close to smashing up against some devastating inner rocks, but you can take command of your emotional rudder and steer clear. In fact you must, in order to give yourself any chance of escaping endless suffering (this goes for both sick and healthy alike).

So much has been written and said about living mindfully, occupying the moment, and staying in the now, that the sentiment has come dangerously close to becoming trite. The effort to stay rooted in the present has also been made to sound almost clinical, like some kind of joyless mental exercise as appealing as attending a psychological fat camp, but the reality of living mindfully entails joyfully soaking up all of the wonder that each moment has to offer, if only we allow ourselves the gift of recognition.

Thoughts of the past have their value, as remembering the good times and learning from the bad can certainly enhance the present, but living too much in the past is a trap of its own, stealing that most precious commodity of all, time, and preventing the creation of new memories to take their place alongside the old. When living with progressive illness, thoughts of the future can be tremendously frightening, and peering forward too often can lead to hopelessness and despair. Whatever a person's circumstance, nobody knows what the next moment may bring. As President Kennedy's limousine made that fateful left turn onto Elm Street in Dallas around noon on a sunny November day, he was the most powerful man in the world, oblivious to the horrors that lay in wait just seconds away.

Despite my piss poor physical state, I still retain enough quality of life to appreciate the hints of magic contained within most moments. For example, at this very instant I can sense the creative gears spinning in my head, and am transported by that feeling. I glance to my left and see one of my favorite vintage fedoras, a perfectly formed deep brown felt hat that's over 50 years old but is still as soft as a kitten, perched atop a tiny Adirondack chair in which sits my little plush replica of Wally the Green Monster, the Boston Red Sox mascot. Silly as it is, that little Wally makes me happy.

In front of me is a wonder that is truly enchanted, my computer, a machine that performs tricks that would leave Houdini insanely jealous. Right now it's transcribing my words as I speak them, and soon enough it will send them to some Fantasia in which people all around the world will be able to read and respond to them. The powers of this electronic wizard leave me humbled and profoundly grateful, having enriched my life in ways that are beyond words.

I look to my right and smile at just how messy my desk is, and then see a photo of one of the true loves of my life, my late great Labrador Retriever Stella, staring up at me with bright sparkling eyes, floppy ears, and a goofy smile on her face, still my faithful companion even though she's no longer here to snooze at my feet.

Outside my window, as I sit perched in the sky 18 floors up, the sounds of the city late at night create a gentle opus, a tapestry of sound comprised of the soft hum of cars and people passing by way down below, regularly punctuated by the staccato rhythms of the labors of pneumatic brakes on faraway buses and garbage trucks, all interrupted by periods of pregnant silence, these elements coming together to comprise a mellow ambience that signals tranquility to the ears of this city boy. My sweatpants and hoodie feel soft and comfy, helping to keep at bay both the emotional and physical chill of the outside world.

The fact of my disability robs this moment of none of its wonder, and if it tried I just wouldn't let it. That may change in a few minutes when I attempt to make my way to the bathroom to get ready for bed, but that moment might as well be decades away, because I am immersed in the now.

All of this does not change the fact that being sick sucks big fat hairy monkey balls, but it does help me keep from being stuck in the suck.

The below video does a much better job than I ever could describing the wonder of every moment. Its visuals and narration are simply sublime. I've been watching it at least once a day for about a week now. I hope you'll be as grateful for it as I am. Please be sure to watch it in high definition and full-screen. When the video starts playing, click on the little gear symbol on the bottom control panel and choose either 720P or 1080P to get high-definition video. For full-screen, click the symbol on the far right of the control panel.





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32 comments:

  1. This sucks …

    a truckload of shit
    orangutan and rhino
    just spilled out the back

    Try climbing out of that pile! But, what do you know, in this post you manage to do just that. The link to this post will be added on my blog next to your Whenever I Feel Afraid link.

    Judy

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    1. Glad you liked the post Judy, and that it inspired quite a unique haiku. I'm willing to bet that it's probably the only haiku ever written about orangutan and rhino shit. I'm honored to have played a part…

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  2. Lovely video, Marc- thanks for posting the link!

    I'm glad that you can successfully 'keep yourself out of the pit' by zooming around New York streets in your wheel-chair. Given your strength of mind, I don't think you'll easily fall in.

    Can't think of anything to add after 'this sucks', but wishing you all the best-

    -Manju

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    1. Manju, it's wonderful to hear from you. It's been too long. Your presence is missed in that place where curmudgeons gather, but it's a joy to see you show up here.

      Glad you enjoyed the video, and thanks for commenting.

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  3. Marc,
    You are so gifted, and truly a gift to our community and world. Still, I wish I didn't know you. That would mean that neither of us would be writing or reading blogs like yours. A loss to be sure, but a worthwhile trade off for good health!
    That video is like a drug, and I, too, will be playing it over and over. What a wonderful antidote to the suck!
    You rock my friend!
    Nicole

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    1. Nicole, yes, it is unfortunate that our paths have crossed under such unlucky stars. I was just thinking about how odd it is that most of the people with MS that I've met are truly decent folk. Is it because we've all gone through similar troubles, or does MS only strike quality people. If I were the boss of all things, the disease would be reserved for serial killers and child molesters. But then again, so would all terrible diseases, and at the end of the day life is a terminal illness that gets us all eventually.

      Wow, what an uplifting response. I'm sure you're thrilled you commented…

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  4. A couple of terrific pieces here...you travel in great company, my friend! It made me think about how a blind person would describe the wonders of their world. I'll bet we are missing a lot that could come to us via other senses.

    Oh, and it is surprising how many options there are when googling "monkey balls".

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    1. Okay, now I'm going to have to go Google monkey balls. That will undoubtedly lead me into an Internet vortex that I won't emerge from for several hours. The Internet-mankind's ultimate way to waste time.

      I'm sure a blind person would have some very enlightening insights as to the state of the world.

      They say that dogs get as much information from their sense of smell as we get from our sense of sight, if not more. I've heard it explained that dogs can almost "see" smells. I wouldn't mind spending a few years in the form of a pampered Labrador Retriever…

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  6. Thank you Marc.

    I've tried to think of things that suck and having MS sucks much worse that a lot of things I could think of. But then I tried to think of things that have sucked in my pre-MS life and compared them. While MS is definitely NOT a blessing, it still didn't suck as much as these did:
    - having a sick child
    - having a depressed spouse
    - losing a loved one in any way except mercifully

    Having MS does suck a little more than being in a swarm of mosquitoes. And being in a swarm of mosquitoes while not being able to escape, swat or scratch because of MS would be pure torture. Not comparable to what I listed above, but still pure torture.

    Mary Ellen

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    1. Yes, there definitely are things that suck much more than having MS. I don't have children, but I can't imagine anything more painful than losing a child. Some wounds just can't heal…

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  7. like the "vortex" description of the royal "flush" that I experience
    I would run a few over too!!
    Kinda like ten-pin bowling:)

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    1. Sometimes it's actually hard overcoming the urge to mow down the people who insist on walking down city streets while texting or reading their e-mails. Some of them have actually walked into my wheelchair, as if anything below chest level just doesn't exist. Talk about not living in the moment, they are walking through one of the most fascinating places on earth, filled with sights and smells and sounds, and all of their attention is focused on a 3 inch screen. What on earth could be so important? For a while I tried listening to my iPod while zipping around in my wheelchair, but I felt like I was in an isolation bubble. I like to hear the sounds of the city.

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  8. Watching the link you supplied - this is guided meditation. Thank you. I've nothing better to add to hairy monkey balls, that pretty much sums it up. But what you said, what you say...these words help me to stay connected and gives voice to what I am feeling in a way that I cannot. So thank you for that, also.

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    1. Glad my words could be of help, and yes, that video is a wonderful summation of much of what Buddhism is all about. The connectedness of everything and everybody, all part of a universe that is both very simple and very complex. Positivity comes in the absence of effort, while negativity takes so much hard work. Strange how addicting that hard work can be…

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  9. MARC, YES MS DOES SUCK, ALTHOUGH I CANNOT DESCRIBE IT AS WELL AS YOU HAVE. THE PIECE & THE VIDEO WERE AWE INSPIRING ESP AFTER THE MISERABLE LAST 2 WKS I HAVE HAD JUST DEALING WITH A STEADY DOWNWARD SPIRIL THIS DISEASE HAS "BLESSED" ME WITH! KEEP UP THE GOOD WORK INSPIRING US ALL AFFLICTED TO KEEP MARCHING ON EVEN IF TO A DIFFERENT BEAT! KIM

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    1. Kim, sorry that you had a rough two weeks, but, given with all we have to deal with, sometimes such stretches are unavoidable. Don't feel bad for feeling bad, allow yourself to work through the process and try to remember that nothing ever stays the same, and that even if you're stuck in a downward spiral, the only way out is through. Just be sure to practice self kindness, and don't beat yourself up.Hope things Go better for you moving forward…

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  10. Something worse than monkey balls to suck---my dogs thrice (yes thrice though why he keeps eating it is beyond me) regurgitated poo which has been ceremoniously deposited on my wife's side of the bed. He's her dog through and through.

    As for how to avoid the pits, I've always taken the approach which got me over a college girl friend. I growled, cursed and ranted. I bemoaned the lieing cheating....I have a limited imagination and an even more limited expressive vocabulary. So by day 3, I was growing rather bored repeating the same rants and complaints about how unfair life was. After soccer, I stopped by 7-11 for a drink and while I was there I bought a one dollar lottery ticket.

    I said to myself, "God if you are as sick of my pissing and moaning as I am, give me a sign. Let me win something..." Then I scratched off the ticket and won two dollars.

    "What's that God? Please speak a little louder. My heathen head is bit dense when it comes to listening." From that point on, I instituted my 3 day rule. I feel perfectly fine having a pity party for 3 days. However after that, it's time to move on to avoid missing all the good fun stuff.

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    1. Your three day rule sure sounds like a good policy to me. Back in my healthy days, when suffering through a heartbreak I had more like what amounted to a three-year rule, burning a torch much too long for women who certainly didn't deserve it. Thinking back over all of that lost time, I can really kick myself. Lots of missed opportunities for fun and adventure, not that I didn't have my share of hijinks despite myself… The folly of youth, I guess. How does that song go? I wish that I knew what I know now, when I was bolder…

      Can't go back, only use the lessons of the past to chart a better present. And like I said, I did manage to get myself into all kinds of delicious trouble…

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  11. Thank you for the video link. I reckon a dead rotting slimey sea slug is pretty bad. I'm going to send you a photo of a painting I did of that "Pit" recently. Cheers Judi from Australia

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    1. Dead slimy sea slugs are indeed pretty bad, not that I've ever actually seen one. I'll take your word for it, though.

      Your painting of the pit is wonderful, a stark depiction of the dark at the end of the tunnel that we all sometimes face…

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  12. i would rather have my left nut slammed in a car door.

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    1. Just how would you make sure that it was only your left nut slammed in a car door? Unless you're nuts are extremely large, it would take quite a precise slam to make sure other assorted naughty bits also weren't crushed in the process… I'm having trouble breathing just thinking about it…

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  13. WK,
    "Oh my God"!!!! You have an unbelievable gift. I thoroughly enjoy reading your beautiful writings which always bring me a smile and some tears. You are a gift to the MS community, you put in words what most of us feel and just cannot verbalize. I know that this is purely selfish, but I am thankful that I have someone like you on my side, inspiring me to look at life in a grateful manner. Now to my homework assignment....I don't think that I can come up with anything more vile than big fat monkey balls but in the days ahead, when I am in one of those pits, I will try to come up with something. BTW, I am so glad you only hit bad pedestrians. In my opinion, completely reasonable and acceptable! You could very well be the next superhero.
    Mari

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    1. Okay, I'm going to hold you to your promise of coming up with something truly disgusting when you find yourself descending into one of those pits. Hopefully, the effort will divert your attention enough to keep you from falling in too far.

      Thank you for your extremely kind words about my place in the MS community, I only wish I could make everybody better instead of describing what so many of us experience. It would be nice to describe something a bit more pleasant, though, like winning $300 million or being named Grand High Exalted Mystic Ruler of the Solar System.

      And I am quite sure that all of the pedestrians I've knee-capped were devious bastard people.

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  14. Not having MS, I have no idea ...
    ... but;
    Alzheimers sucks
    Cancer sucks
    Intense bullying sucks
    Betrayal from a loved one sucks
    Pressure sores suck.

    ... I wish I could say something more profound, but I can't.

    Keep sharing, you have no idea how many fellow human beings you are giving even the smallest of hope to, go boldly ...

    GC

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    1. Thanks for your kind words, and yes, there are a whole lot of things that suck. Luckily, there are also a lot of things that don't suck, and I'd like to think that in the end it all evens out. Not entirely sure it does, as sometimes it certainly seems that the randomness of the universe hands out an undue amount of hardship to certain folks. That's why it's important to learn how to play a bad hand well. A little bluffing can take you a long way…

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    2. Hey Marc--

      I'm late to the party, but I'd have to vote for "wormy, runny cat shit." The neighborhood strays leave buried mounds in my garden and trust me--- they are not in good health. A close second would have to be this vegan cheese product I encountered once...

      Two questions: 1)Have you ever noticed issues with cognitive functioning? It's been kicking my ass the past couple of months. 2)What do you make of all the diet/nutrition hype? Desperation has made me try some of it, but another part of me wants to strangle the well-meaning people who rave like the converted.

      Best,
      Sadie

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    3. Sadie-so far, I haven't experienced any problems with cognitive problems. I'm very sorry to hear they are giving you a hard time.

      As for diet, I'm sure that patient accounts of the benefits of various diets are not contrived, however, I'm not sure that all patients would derive the same benefits. MS is a very complex disease, and I believe that there are more variations to the disease than science currently recognizes. Some of these variations may be more sensitive to diet than others. Personally, I've tried a few "MS friendly" diets, but none seem to have made any impact on my disease. Then again, my doctors aren't at all sure that what I have is actually MS, so I'm probably not the best example…

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  15. Hi Marc,

    I just wanna thank you for writing this blog. And for this video link. I had a really shitty last week but then I read your blog and saw this video (a couple of times :) and it helped me out of the suck. Once again your blog made my life (with MS) suck a little less. And for that I thank you.

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    1. You're very welcome, and I'm so glad that my blog could be of some help in pulling you out of the suck. I think it's impossible not to fall in every now and then, but it's important to not get too used to the place. Life is to be lived, regardless of the limitations imposed by some suck ass disease. At the very least, you've just got to make the best of a bad situation…

      The video really is terrific. The filmmaker manages to touch something very deep in the soul…

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    2. I just looked at the video again :) A perfect way to start my saturday. I'm a musician myself and I love cinematography as well. This video is a perfect combination of both film and music. My personal goal is to write that perfect song. A song that "touches the soul". This video is a great inspiration. Keep writing this great blog.

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