Thursday, November 17, 2011

Mind the Gap

When riding on the London Underground (subway), passengers are warned to "mind the gap". This is a reminder to beware the space between the subway car and the platform, which can pose a hazard to unwary folks entering or exiting the train. Having never been to England, I know this only from the movies, but I would imagine that nothing has changed and passengers are still reminded to take care to avoid any accidents. You've got to love the polite but direct way the British deliver this warning. Mind The Gap. Here in New York City, a similar official admonition would probably be something like "Look Alive, Jackass".

Be that as it may, in the course of our lives we are all confronted with gaps, both physical and existential, and, as with so many things, dealing with a chronic illness only magnifies these breaches. Perhaps the most difficult gap people come to grapple with is the sometimes gaping chasm between what they want and what they receive. We all start out with minds filled with dreams of who and what we'll be, a little preview clip of our own lives playing repeatedly in our heads. Despite ambitions that differ from individual to individual, the scenes playing out in our imaginations generally include joyful images of success, romance, and immense satisfaction. Aside from a very fortunate few, though, more often than not, as the paths of our lives unfold these imaginings divert increasingly from reality, and our expectations adapt to fit the circumstances in which we find ourselves.

When I was a little boy I wanted to be either a paleontologist or a veterinarian. I loved dinosaurs and dogs, so the future seemed clear. When I got older, in adolescence and early adulthood, I fancied myself a writer or rock star, in either case living large and thoroughly enjoying it. For a while I did front a rock band, and in some dusty folder packed away in a box whose location is now forgotten lives the yellowing, long untouched beginnings of a novel, so old it was written on a typewriter. I did the starving artist thing for a while, but found I could only run away from responsibility for so long, and eventually had to (gulp) cave in and take a "real job", to my absolute horror and chagrin. Surprisingly, after the initial shock wore off, my ambitions adapted and fell in line with my new reality, and I found myself thirsting for advancement in my new field of employment (TV and video production). Still, though, I was regularly haunted by the remnants of my old dreams, and despite a career that turned out to be relatively successful, somewhere deep within my soul flickered embers of disappointment, a feeling that I had somehow sold myself short.

When healthy, though, it was easy enough to placate myself with thoughts of the future. Even though I hadn't achieved the summits for which I had originally set out, the future was still an open book, and I could sit at my desk and pleasantly daydream about a tomorrow that was quite different from today. During the course of my life, I had jobs I liked and jobs I hated, periods filled with romance and also times of intense loneliness, episodes of mile a minute excitement punctuated by stretches of stone cold boredom. Through all of these ups and downs was always the promise of the future, an intensely strong motivational force that perpetually fueled the desire to plow onward. The gap between what I wanted and what I received could be papered over and camouflaged by the anticipation of a future that might still hold some magical surprises.

Living with a progressively disabling illness completely changes the equation, though. Instead of a future holding visions of grand dreams fulfilled, now the thought of days to come holds quite a bit of trepidation, the clouds coming over the horizon looking threatening indeed. I've watched the right side of my body slowly become essentially useless, and now the left is proceeding down a similar path. Of course, there is always hope, in the form of stem cells, CCSVI, neuroprotective and neuroregenerative therapies, and any one of a number of alternative treatments, but I'll not kid myself. As a man who likes to gamble, I have a good understanding of odds relative to eventual outcomes, and if this was a horserace, the pony named "Wheelchair Kamikaze Gets Cured" would be a definite longshot. Still, longshots do occasionally come in, and when they do the payoff is large and sweet. I've always been a guy to back the underdog, and I've cashed in on my share of longshots, so I am by no means counting myself out, but my situation has certainly put a damper on my proclivity to daydream about the future.

Of all the things that MS robs from those that it afflicts, perhaps it is this pilfering of a future filled with promise that has the potential to wound the most. Without it, the gulf between "wanted" and "received" can be viewed with crystal clarity. When healthy, it's easy enough to leave the mistakes of the past behind, because the activities of the present and anticipation of the future serve as kinetic distractions. Life proceeds like a twig caught in a flowing river, the headlong rush leaving little time to ruminate over the treacherous rapids or dangerous waterfalls that have already been navigated. Now, though, life has been cleaved in two along a fissure called illness, leaving me plenty of time to examine the intricacies of my existence before I got sick and pick apart the tangle of circumstances, some intended and some coincidental, that littered the path I followed.

Though there is much wisdom that can be gained from such retrospective examination, there's also plenty of room for regret. I certainly made my share of mistakes, some of them doozies, and now that my past existence has for all intents and purposes been separated from my current narrative, it's far too easy to get lost in a rush of "I should haves" and "I could haves". Some of these are relatively petty, like why the hell didn't I learn to scuba dive during the 10 years I lived in Florida, but others are more profound, "should haves" that had the potential to fundamentally impact my existence, lost opportunities that loom especially large now that the timeline of my life no longer runs in a continuous fashion, but rather as a whole broken into pieces. Might there have been a choice along the way that would have spared me my current predicament?

As a person dealing with a progressively disabling disease, losing the previously unappreciated luxury of burying the past in anticipation of the future leaves one to either flounder mournfully and angrily at the cruelty of the fates, or to consciously glean whatever positives can be plucked from the past and concentrate on making the most of the present. For all people, sick and healthy alike, the past has only as much influence on the present as it is allowed to have, although this can be a difficult concept to grasp and act upon. Those of us who have seen our lives divided by unfortunate circumstance, who have received a future none of us would have ever wanted, are forced to reconcile ourselves to this most unfortunate gap and consciously make the choice to maximize the present as an entity unto itself, divorced of the past and independent of whatever the future may hold.

Thus, we are impelled to mind the gap, and make the most of every day. The future may be frightening and the past of little consequence, leaving this day a standalone vessel which we can fill with purpose and contentment, paying little mind to desires left  unrealized, instead focusing on appreciating that which we have and not lamenting our losses. By consciously taking it day by day, hour by hour, minute by minute, and second by second, fulfillment can be found in spite of this infernal illness, the gap between wanted and received reduced to an inconsequential sliver.

So, mind the gap, lest the gap mind you…

(Not sure what that last line actually means, but it sure sounds good, kinda spooky, even…)

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  1. I do not understand why you do not finish that novel, or start another one. Your writings are a pleasure to read.

  2. Yes, brother, I agree. Live for today. Pity it took this to teach us, but learn we have.

  3. "...consciously make the choice to maximize the present as an entity unto itself, divorced of the past and independent of whatever the future may hold."
    Right on, brother.
    I needed to read this today - thanks!

  4. I've certainly been mindful of the difference in how I perceive time versus how my coworkers view it's passage. I've even had the frustrated conversations with my wife about why now seems to be so much more important to me than her and others. There is a large difference between knowing intellectually that time is fleeting and feeling it as somebody with a degenerative conditions does. Still, there is a sense in which this perception helps us by giving us a kick in the rump reminder to enjoy today. Many never receive that kick and never get around to the doing of what they want because they never took stock of their actual desires. So while it's easy to lament the gap, take some solace you noticed it. Not everybody creates bucket lists. Few of those who do have the sense of urgency which makes them pursue their desires NOW. For most it's the "someday meaning never till it's too late" catch. I try to tell myself if MS takes the possibility of accomplishing half my dreams but makes me attempt the other half, then maybe the trade is less bad. Who would think a disease whose most common symptom is fatigue could be an antidote for complacency?

  5. My word, you are such a phenomenal writer! I feel so empowered.This disease forces to stay present...well said indeed!

  6. Ah, my philosophical are my trusty leader. And are you writing that well by using DragonSpeak? Even more impressive!

  7. That was a good read.

    I often dwell too much on my past because, well, my past was awesome. So awesome, in fact, that I had no real plans for the future when I was at my physical best.

    I was diagnosed right before grad school but because of my DX I never really thought of what I would do after grad school - and nobody knows what to do with an ambivalent holder of a master's in history.

    Had I been more ambitious I might have had a clearer vision of my future and The Gap would seem even wider than it already does... and it already seems pretty wide.

    But still the day to day is all anyone really has. Sure it would have been nice to get a PhD and be a published, tenured history professor, but my life's still pretty good because today I got to enjoy a cup of tea and my 2 year old told me he loved me.

  8. Anonymous-thank you for the kind words, the old novel I was writing is now so old that it would have to be considered a period piece. I'd like to get some of my essays from this blog published, and I've come to believe that my style of writing lends itself more to commentary and nonfiction than to fiction. Anyway, thanks for the encouragement…

    Sue-yes, it is a pity that it took getting a dread illness to teach a basic truth, especially one that I gave so much lip service to back in my healthy days but was unable to actually put into practice. Lessons, lessons, lessons…

    Lisa-glad my words could serve as some kind of fortification, and thanks for your nice words…

    Life-well put, and there is a huge difference between the knowing and the doing. Back in my healthy days, I read lots of Buddhist and Taoist texts, and understood on a guttural level the immense wisdom held within them. Unfortunately, try as I might, I found it almost impossible to "live" the knowledge. Then I got sick, and had that "aha" moment. It's as if the universe was intent on getting me to understand the message, and when whispering didn't bring about the desired result, a more dramatic intervention was called for…

    Nicole-thanks so much. I'm constantly astounded that my scribblings have touched other human beings. Another gift brought by this unwelcome messenger…

    Daphne-watch out, I might just lead you off a cliff. I promise I'll try not to, but I never really considered myself much of a leader. Much to inclined to march to the beat of a very different drum. Oh, after getting used to using Dragon NaturallySpeaking, I don't think I could go back to typing even if I was to suddenly wake up healthy. I love the Dragon…

    Aitch-it is easy to get caught up in the past, and I had quite a few adventures that I enjoy reliving maybe too often myself. Still, we must try to squeeze the most out of every day, but I think a little reminiscing is not a bad thing. And being told by your two-year-old how much he loves you, and over a cup of tea at that, well, that is quite the rarefied pleasure…

  9. Dear wheelchair kamikazi, I feel you and I live in delray beach,fl it's absolutely true! those little bastards cross the street thinking cars will atoumaticly stop for them, They also take to much time to load on public transportation too, for the bus to roll up and put out it's wheelchair ramp and they are just going to the mall holding up the entire bus for 5 mins. too ( they are not even handicapped too just DUI'ers getting from place to place.........When will it Stop....David John Armstrong running for Delray Beaches City commission March 2012, New blood an a voice for the community. 561-414-7722

  10. I made it I'm on the Ballot for March 13th's election. Underdog of the crew!